I have spent some time looking over old CaringBridge posts about our experiences raising Ryan and how it has affected our entire family. I found this post from when we celebrated Sidney’s 6th and Ryan’s 2nd birthdays (both born on the same day). And everything I wrote is still so very true today. He might be bigger, he might have a lot more medical problems, he might have digressed in all the things he can do, yet he is as loved – if not more – than he was 17 years ago. It sounds like a lifetime ago, but it also feels like just yesterday.

I look back at the past and stand in wonder at all the things we have been through and accomplished in those 17 years. The one thing I can definitely say is this – God had our backs. The love shared between Travis and me and among our older kids…those are the blessings that saw us through each day. Yes it has been extremely hard, but at the same time, we know we are so very blessed to call Ryan our own.

October 2005:

Today Ryan turns two. I am reminded of how drastically our lives have changed since his birth. For the most part, our lives have changed for the better. We’ve learned that the world’s standard of perfection is completely opposite of God’s standard of perfection. I think back to last January…on a cold night as I laid in bed crying about all of Ryan’s problems and heard God say to me “He is as I intended him to be.” Those words have changed my life.

Ryan is part of God’s perfect creation. No, he is not perfect in the world’s eyes, but to God, Ryan is completely perfect and He is happy with the boy I call my son. Ryan is a gift, and I am learning each day to find the joy in being his mom. I’d be lying if I said I never grieve all that Ryan will never be. As Ryan gets older, we’ve noticed that people are really starting to stare and notice that he is different. I struggle often with having a two-year-old who still cannot walk, who still cannot scream “NO” to me, who still cannot use his hands correctly, who still neglects his left side, who still suffers from seizures, who has major sensory processing problems. I could go on and on about Ryan’s disabilities.

But instead, I choose to focus on all that Ryan is. He is the most loving child I have ever met. He loves to greet people with lots of kisses; he loves to play peek-a-boo and will do anything for attention. He loves it when we copy his facial expressions and movements. He loves to giggle and be tickled. He loves to play with his siblings. He might not be “perfect” to a lot of people, but he could not be any more perfect to us. We love him to pieces and wouldn’t trade him for anything.

God has showed us that His love reaches us in the lowest of lows. Through our toughest days, grieving the loss of a normal child, we’ve felt God’s perfect peace come over us. We’ve learned to rest in His arms and allow Him to change our attitudes. We’ve learned to let go of our own expectations and wishes so God can fill us with His perfect plan for our lives. We pray continually that God will use Ryan and us as his family to impact other’s lives and bring people to Christ.

So as we celebrate Ryan’s birthday, we realize that Ryan is more than a two year old who happens to be handicapped. He is God’s perfect creation, placed in the perfect home for him, perfectly loved and accepted as he is. Ryan has many uphill battles to overcome in the future, but we’ve learned to celebrate every accomplishment. They just mean so much more when he has to work so much harder to reach a milestone. The day he finally walks I will be crying a river because those small things in life take on a whole new meaning in the life of a disabled child.

Happy birthday, my sweetness! I love you so very much, Ryan, and you are my special baby. You’ve changed my life in so many wonderful ways, and I wouldn’t trade a day with you for anything this world has to offer. I thank God for the privilege of being your mommy and look forward to the days ahead with you. I pray this next year brings you many happy days and new adventures. You are loved!

And this beautiful story about a man named Kevin… I wish I knew who wrote it, so I could give them credit –

GOD LIVES UNDER THE BED

I envy Kevin.

My brother Kevin thinks God lives under his bed. At least that’s what I heard him say one night. He was praying out loud in his dark bedroom, and I stopped to listen, “Are you there, God?” he said. “Where are you? Oh, I see. Under the bed…”

I giggled softly and tiptoed off to my own room. Kevin’s unique perspectives are often a source of amusement.

But that night something else lingered long after the humor. I realized for the first time the very different world Kevin lives in. He was born 30 years ago, mentally disabled as a result of difficulties during labor. Apart from his size (he’s 6-foot-2), there are few ways in which he is an adult.

He reasons and communicates with the capabilities of a 7-year-old, and he always will. He will probably always believe that God lives under his bed, that Santa Claus is the one who fills the space under our tree every Christmas and that airplanes stay up in the sky because angels carry them.

I remember wondering if Kevin realizes he is different. Is he ever dissatisfied with his monotonous life?

Up before dawn each day, off to work at a workshop for the disabled, home to walk our cocker spaniel, return to eat his favorite macaroni-and-cheese for dinner, and later to bed. The only variation in the entire scheme is laundry, when he hovers excitedly over the washing machine like a mother with her newborn child.

He does not seem dissatisfied. He lopes out to the bus every morning at 7:05, eager for a day of simple work. He wrings his hands excitedly while the water boils on the stove before dinner, and he stays up late twice a week to gather our dirty laundry for his next day’s laundry chores.

And Saturdays-oh, the bliss of Saturdays! That’s the day my Dad takes Kevin to the airport to have a soft drink, watch the planes land, and speculate loudly on the destination of each passenger inside. “That one’s goin’ to Chi-car-go!” Kevin shouts as he claps his hands. His anticipation is so great he can hardly sleep on Friday nights. And so goes his world of daily rituals and weekend field trips.

He doesn’t know what it means to be discontent. His life is simple. He will never know the entanglements of wealth of power, and he does not care what brand of clothing he wears or what kind of food he eats. His needs have always been met, and he never worries that one day they may not be.

His hands are diligent. Kevin is never so happy as when he is working. When he unloads the dishwasher or vacuums the carpet, his heart is completely in it. He does not shrink from a job when it is begun, and he does not leave a job until it is finished. But when his tasks are done, Kevin knows how to relax. He is not obsessed with his work or the work of others.

His heart is pure. He still believes everyone tells the truth, promises must be kept, and when you are wrong, you apologize instead of arguing. Free from pride and unconcerned with appearances, Kevin is not afraid to cry when he is hurt, angry or sorry. He is always transparent, always sincere. And he trusts God. Not confined by intellectual reasoning, when he comes to Christ, he comes as a child.

Kevin seems to know God – to really be friends with Him in a way that is difficult for an “educated” person to grasp. God seems like his closest companion. It is then I realize that perhaps he is not the one with the handicap. I am. My obligations, my fear, my pride, my circumstances — they all become disabilities when I do not trust them to God’s care.

Who knows if Kevin comprehends things I can never learn? After all, he has spent his whole life in that kind of innocence.

And one day, when the mysteries of heaven are opened, we will be amazed at how close God really is…. Kevin won’t be surprised at all!

I wrote the post below on July 22, 2018, and sit with interest and question of the circumstances leading to my heavy heart and raw emotions written. I wonder why I never posted this. I wonder if at the time, this was my way of putting heaviness into words. I wonder if it was a silent cry for help left unattended lying secret in my heart. Oh how a day, a week, a season can change. Come feel my heart and the wonders of my thoughts below:

I don’t really know where to start. All these feelings jumbled in my head, hiding in the corners of my heart. I am a big scattered mess. I feel lost, wandering aimlessly, trying to figure out which direction to move. How to put one foot in front of the other. I feel raw and numb and careless all at once. I feel nothing. I sense fear moving in, closer with every step I take. I see its shadow at my side getting bigger as I move forward with each small step. That shadow tells me it is getting closer and will soon overtake me. That worn bench with peeling pain on the side of this path I am on calls out to me. It says come sit for a while. It tells me to just stop moving forward. But my head says keep going. Do not stop and sit. Keep moving. Keep trekking ahead. Keep pushing. I feel like I don’t belong. I feel confused about my path. I feel numb to my faith. I don’t see God. I don’t feel him. I don’t hear him. Are you there God? Do you see me on this path wanting to just stop and quit? Do you see my tears? Do you know I feel alone and confused? Do you get that I am questioning your call on my life? Do you even care at all?

Friends, how many of you find yourself exactly at that point sometimes? Feeling like you are a scattered, confused mix of emotions and thoughts. Feeling like there is no direction in your life as you wonder where you should be headed. Like the path you are on might not be the path you should be on. Questioning everything. Those are real emotions. Valid thoughts.

And here I sit in a new season, a new house, a new town four years later. As my thoughts wander to that time in my life, I am aware of the unchanged beliefs I carry with me still even though I may not have realized them in 2018. No matter whether a good or a tough day, no matter my perspective or attitude, no matter my wavering or well founded faith, I know who carries me through my days and find rest in this verse:

I remain confident of this: I will see the goodness of the Lord in the land of the living. Psalms 27:13-14

Just this week, I experienced both happiness and frustration. We joyfully welcomed our fourth grandchild – Cooper Thomas Benson – born to our daughter and son-in-law. He joins Brad and Taylor’s three kids – Bode, Iva and Eloise. What sweet, magical delight they bring to our lives. Yet at the same time, the frustration of becoming Ryan’s guardians as he turned 19 last week brings loads of emotions and disbelief. Years ago, we would never have imagined this season of lawyers, the judicial system, the limits of a temporary emergency guardianship that mandates we keep Ryan in the state of Nebraska until our court date in December. We will miss our planned trip to Texas over Thanksgiving weekend with all my family. We will miss being able to travel two hours down the road to see three of our grandkids and their loving parents in Missouri. We will miss the ability to drive just over an hour away to spend time with my dad and his wife in Iowa. We are trapped. All because a judge made rules we simply cannot comprehend or understand. Yet in the frustration, the disbelief, the disappointment that are all temporary, we stand in that same belief that a good future will find us, that positive things are yet to come, that we will surely see the goodness of the Lord in this life.

Through the joy and the struggles and the excitement and dismay, I look ahead with confidence of God’s provision. When those aimless, scattered thoughts tell me to come sit in despair, my today tells me to keep moving ahead, keep believing, keep trusting. Because even when hard times come, I can rest in knowing better days are ahead, goodness will come, faith will keep me going.

Friendships have been hard for me in my adult years. I cannot say this started in elementary or junior high because I was always popular with lots of great friends. But as an adult, I have struggled to let people really get close, to see the real me. And I did not really understand why I kept people away.

Well, a few years ago, I learned about core beliefs. If you have never heard of them, core beliefs are assumptions we make about ourselves, others or the world that we mistake for fact. They can be positive or negative. You might have a positive core belief that says “I can do anything I set my mind to”. You may have grown up with supportive, encouraging parents who cheered you on and helped you believe you can do anything you want in life to accomplish your dreams. On the flip side, you may have negative core beliefs such as “I don’t belong” or “the world is a dangerous place”. Maybe you were rejected by a family member at an early age or you experienced abuse or a tragic situation that caused you to be anxious and leery of new situations and people. These beliefs have the power to shape how you interact with others and the world around you as an adult.

A few years ago, I went through some counseling for an issue I wanted help with, and it was during one of those conversations when the counselor asked me what my core beliefs were. I had to think about it for a bit and was finally able to put the pieces together that explained why I had some of the self depreciating thoughts and beliefs I carried for many years.

One of my core beliefs started in my childhood when my parents called me “big boned”. I have believed I am fat since, well, forever. Now to my parents’ defense, I do not know they really intended to say I was fat. But, couple the term “big boned” with a short, very petite older sister whom I always compared myself to, and it was easy to see why I saw myself as fat. I carried that core belief for years. I simply did not understand at an early age that my sister and I have very different body types. I have a very athletic, muscular build, but that does not mean I am fat or ever have been.

Another core belief I clung to that really affected my ability to let women get close to me as an adult was I do not belong, and no one will like me because of my personality. I remember as a child being described repeatedly as having a strong personality. And in my mind, that correlated as a negative trait, to not being liked or belonging. I know I am passionate and can come across strongly; I am transparent and not afraid to speak my mind. But that does not mean I have a personality people will not like. I am also very giving and generous; I love to be social and have fun. I love to serve others. We all have strengths and challenges in our personalities, but those traits do not make any one of us better than the next person. I just wish I had understood this years ago. Oh the things I would go back and tell my younger self if I could!

One of the situations that really shaped this core belief that I do not belong happened when I was a senior in high school. I was in a really bad dating relationship and was often isolated from my friends. It was honestly one of the very hardest years of my life. I went to school on a Monday morning and heard all my friends talking about how much fun they had together at a sleepover Friday night. A sleepover I was not invited to. I still remember the deep, overwhelming pain of rejection, of not being invited. It cut me to my core. For years as an adult, I have had dreams about being left out. These dreams are always with those same friends whom I were my people back in high school. So a few years ago when I went through counseling, I finally understood how all of this fit together.

Fast forward to last year when Travis, Ryan and I moved to Papillion. One of my biggest fears of moving was having to start over with friends. Of course I still have my core group who are my very best friends. I have a handful of women whom I absolutely love and trust, who accept me just as I am. I cherish those women. It took a lot of time to let them see the real me.

Well several months ago I reconnected with three of my childhood friends, and a couple weeks ago, the four of us met for breakfast. One of the women in this group is the one who hosted that sleepover I was not invited to all those years ago (and she was not to blame for me being left out – she simply hosted the sleepover). Sitting there chatting while we ate our breakfast, I opened up about that dreaded memory and how hurt I was all those years ago, how it affected my ability to trust women and allow them to get close to me. And I made sure she knew it was not her fault I was not invited. The beauty in seeing her again after all these years, in her seeking out friendship with me, showing interest in my life, speaking truth into me…it has been so healing.

We talked about core beliefs. We opened up about some of the hurts we experienced in our younger years. We shared our hurts and some of the difficult experiences we went through. Experiences that formed core beliefs in how we see the world and those around us. And we all agreed how healing it was to sit and talk through those memories. To sit with a small group of women who choose each other, who seek friendship and enjoy sharing our lives is a beautiful thing. I really believe the Lord orchestrated our meeting up all these years later. We have only gotten together a couple times, but I am confident our friendships will last for years to come. In this short amount of time we have been meeting, I know my heart has softened. I have experienced an acceptance and feeling of being wanted I did not know my heart needed.

Life is a funny thing. We often believe people see us one way or remember things about us that they do not. Our view of ourselves is usually much worse than what others see. If only we could see ourselves from the view the Lord sees, the beauty others often see as well.

I love Psalm 139 which says, “For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.”

I challenge each of you to take some time to think about your core beliefs, those assumptions you have carried that may not be true at all. It can be a difficult task, but there is so much freedom and peace when you can work through them and see yourself for the beautiful person you are.

I ate an apple and within minutes, my lips swelled and became itchy. A little bit of panic set in as thoughts of the anaphylaxis I saw in my years as an ER nurse came flooding in. I grabbed some Benadryl and gave anxious directions to my husband on calling 911 if specific symptoms arose. Aside from swollen lips and an itchy mouth, things settled down and life went on. Then several months later, the same thing happened after eating peach pie. This past spring, I did allergy testing and discovered I have a host of allergies I was unaware of – molds, grasses, trees, weeds, dogs, cats.

I left the office armed with a load of instructions, education and medications to trial before eventually starting allergy shots. And what I realized over the next couple of days is just how badly I had been feeling for months, really years, without giving proper attention to my health. I became immune to the symptoms my body was throwing at me telling me something was off. I ignored the itchy eyes, runny nose, sore throat, headaches and feelings of stuffiness. I accepted a state of health that could be corrected while convincing myself it would all pass. When in reality, there has been allergy testing, numerous medications, and plenty of options to help me achieve better health.

I remember years ago when I was a young mom with four kids under the age of six. Travis was working full time, and I stayed home with the kids. I had my core group of friends. I started a weekly play date group with other stay at home moms. I drug the kids to church each Tuesday for Bible study. I kept the house clean, managed a schedule, taught the kids manners and kept them accountable for their attitudes and actions. I baked cookies and made homemade meals most nights. But it was not until a warm summer day after a difficult conversation with my neighbor, whose youngest son was friends with my oldest, that I realized what had taken root in my heart. Arrogance had crept in reflecting an ugly and uncomfortable attitude of doing everything right. I had become so judgmental to the differences in how we raised our children, how we went about our daily lives, how our kids behaved. And it affected our relationship which for a long time, I did not realize. My neighbor felt the negativity and judgement I quietly laid upon her. She knew I looked down on her. She felt the harshness in my spirit toward her. The allergen of pride had set in and made a home in my heart.

I had not felt the sting of pride that said I was doing everything right. I had not recognized the judgement I cast on others who did not live their lives to my standard. I had not felt the conviction of a heart undone by selfishness and conceit. I lived my life with infrequent uncomfortableness. Just as I ignored the irritants in my respiratory system until the doctor pointed it out, so many allergens had crept into my heart and mind causing symptoms that should have warned me something was not right.

Attitudes of arrogance, jealousy, pride, disdain, judgement and negativity can so easily creep into our hearts and minds without us realizing it. They become our normal. We accept them, feed them, stroke the ego that develops. Then the day comes when something significant happens – swollen lips, being left out, not making the team, getting a broken heart, needing medical attention, having a difficult conversation with a neighbor – and we suddenly realize the allergen we easily ignored can no longer be shoved to the side and must be dealt with.

An allergen of the body can be easily identified when it attacks for the first time. Hives appear, shortness of breath attacks, lips swell. Yet when an allergen of the mind and heart attacks, it is so easy to simply look the other way. Only later when that allergen has taken root in our attitudes and relationships do we realize the damage done.

I go back to this verse often from Matthew 23 (MSG) that says it so well…..You are like one who will only wipe clean the outside of a cup or bowl, leaving the inside filthy. You are foolish to ignore the greed and self-indulgence that live like germs within you. You are blind to your evil. Shouldn’t the one who cleans the outside also be concerned with cleaning the inside? You need to have more than clean dishes; you need clean hearts!

I love this translation because it provides such a strong picture of how easily those annoying allergens creep in. It is easy to concern ourselves with the outward appearance of our lives, how we look to others, wanting to impress those around us, desires to have it all together. Yet at the same time, we can ignore the inside where those allergens – our thoughts and attitudes – reside that make us ugly.

God is much more concerned with the attitude of our hearts than with the appearance of our daily lives. He cares much more about our willingness to come to Him for help when we have been judgy than if we have it all together at the Tuesday morning mom’s group. Our loving Father desires an attitude of humility more than our desire to impress others with the number of responsibilities we can manage at one time.

In I Samuel 16, the Lord called Samuel to go to Bethlehem and find a man named Jesse whose son would be the next king. Jesse brings his sons out one by one, and after meeting seven sons, Samuel asks Jesse if he has any more sons. It is then he meets David and anoints him as king. After meeting the first son who was strong and noble, the Lord says to Samuel in verse 7, “The Lord doesn’t see things the way you see them. People judge by outward appearance, but the Lord looks at the heart.” Who would have thought a young shepherd would be Israel’s second king. The Lord looked at David’s heart, not at how many awards were hung on David’s bedroom wall or how many things he was doing “right”.

If you read on in the Bible, you would see David had a heart after God, but he too allowed allergens to set in. While he did a lot of things right, David allowed jealousy and greed to take root in his life. The consequences were devastating, but David’s repentance brought forgiveness. David was not a perfect man by any stretch, yet his journey provides a great example of how God can – and will – restore us when we seek His face. When we are willing to address the allergens and clean the inside, God shows up and brings us back. As the old hymn says…great is Thy faithfulness, great is Thy faithfulness, morning by morning, new mercies I see, all I have needed, Thy hand hath provided, great is Thy faithfulness, Lord unto me. His mercies are new every morning!

What allergens have snuck into your heart? Do you need a reset with your attitude? Let the Lord show you today how you can restore your heart and mind to reflect His gentleness, love and mercy.

I have four children – three are adults and out of the house – and the youngest is disabled, so he will always live with us. His profound developmental delays keep him from holding a job, going to college or doing anything independently. Sometimes I sit and look back at all the years past; those moments in time when I never thought I would find my way out of a season. I often wonder if I used to spend more time looking ahead instead of living in the moment enjoying each new skill or sign of maturity.

When the kids were little, I was always waiting for them to sleep through the night or be able to feed themselves. Then it was the anticipation of being able to tie their own shoes, take a shower independently, get their own breakfast and ride a bike. And years later it was the waiting to drive independently, working for their own spending money, playing sports, joining school clubs and having sleepovers. So much waiting and dreaming of what was to come as if the next season, the next phase, would be so much better or easier or more enjoyable than the one being experienced. Sometimes the moments of mundane, routine living cause us to overlook the joy in the today as we anxiously wait for the moments of our tomorrows. Yet what we miss in looking ahead is the wonder of each today. We miss the color and beauty and depth of the living occurring right in front of us. Maybe it is society that tells us there is something bigger, better or greater to be had if we can just figure out how to get there, how to hurry life into the next season. What we so easily fail to recognize is that every season, every age, every child brings a unique spice of life and reason to be thankful. Just this past week, we spent five days in the mountains with our kids. The oldest three are on their own with two married, one with a child, and one in the military and home for two weeks. We rented a big, four bedroom house up on a hill at the base of the Rockies overlooking the city. It was a beautiful view with lots of outdoor seating and space to roam and enjoy the surroundings. At one point, as I sat outside on a worn wicker chair, my thoughts went back to those days of littles when I was so busy running, playing, cooking, cleaning, playing referee and driving to all the activities. Oh how life has changed from then to now. I remembered the moments throughout their childhood when I would often think of the days ahead when I would not have to do all this anymore and things would be easier. Yet now that some day is here, and I find myself wishing for more time. I certainly love having adult children, but it is not necessarily what I expected. Maybe I do not know what I expected. It is a lot of listening, trying not to give too much advice, and learning how to be more of a friend than a parent. I have learned my adult kids do not want me to tell them what worked for me when I was their age or how to manage a specific situation. Instead, they want to do the talking and be supported, not preached at. They are navigating their own paths, forming their own beliefs, and creating their own circle of support.

Jim Burns wrote a book called Doing Life With Your Adult Children: Keep Your Mouth Shut and the Welcome Mat Out. Let me just say, if you have adult kids, or are about to release them into the world, you need this book. Burns says “Although you and your child are traveling different paths, you’re on a parallel journey of reinventing your relationship. It’s better when you navigate it together, but neither of you have passed this way before, and even if you have made the transition with one child, the next child likely will approach the transition to adulthood differently…..You no doubt will experience bewilderment when your grown kids violate your values or live differently from how they were raised, but your goal must remain the same: to help your children transition to responsible adulthood.” My kids have all verbalized at least one thing they wish we had done differently, but like most parents, we did the best we could. There are many details of our lives we did not share with them – things that definitely shaped our family circumstances and how we parented – but at the end of the day, when I look back at the years gone by, I can confidently say we did our best, we gave it our all, we loved passionately and fully, we handed out apologies when needed and embraced with loving arms. And the result is three beautiful, adult kids who have done well for themselves. Burns also says, “Your attitude, lifestyle, values, faith, and example impact your kids in ways you may never fully know. Author and pastor Chuck Swindoll summarized building legacy so well when he said, ‘Each day of our lives we make deposits in the memory banks of our children’.” What truth that holds because we may never fully see the impact our parenting has on our kids and how they live their lives, raise their kids, treat others, or make decisions. I will say the most important thing we gave our kids was an introduction to their faith. How they choose to live it out is up to them.

Just this past week, one of the kids was telling me details about his life, and I said something that must have sounded like advice or instruction. And in the typical response, he said “mom, you just don’t get it”. And he was right. I do not get his life because I have never experienced the environment or the structure under which he lives and breathes. I kind of laughed and thought of this from Burns’ book: “I’ve learned that in most cases the best policy for parents is to bite their tongues and remain silent. Withholding advice goes against our nature as parents, but unsolicited advice is usually taken as criticism.” Did you hear that friends? Unsolicited advice is usually taken as criticism. Let me tell you from numerous experiences with my own kids – that is so true. They do not want me to tell them how to interact with friends, what to do about their college scheduling problems, how to parent their kids, or how to manage a stressful work environment. They want – and need – to figure it out on their own. But that is so hard to do! I have a lot of words to get out. I have a lot of opinions. I like to say I verbally vomit whatever I am thinking in the moment. So for me to bite my tongue does not come naturally. But it is a skill I am developing and using frequently these days. I want my kids to know I support them no matter what choice they make, whether it is how I would have done it or not. My kids need to know I am here as a safe place to land.

While I sometimes look back with regret for the things I think I should have done differently in the years that have passed, I know in my heart my husband and I did the very best we could under the circumstances in which we lived and breathed. At the time, with the resources and knowledge we had, we did what we thought was right. I do not know of anyone who looks back on days of the past without wishing they could change at least a little. But wishing I had done some things differently does not correlate to me being a bad mom. I know I did alright because I have kids who have grown into responsible, caring, thoughtful adults. And I know I had a part in that.

So as my husband and I are now fully enveloped in the season of grown kids, grand babies, and everything else adulting, I am choosing to be thankful for all the yesterdays. I am choosing to relish the wonderful memories. I am choosing to remember the laughter and fun we had. While I cannot predict or even have a say in how my kids live their adult lives, I will certainly be available to give hugs, listen quietly and provide support. I am thankful I can now be a cheerleader mom instead of having to lead the way and direct the decisions they make. That duty is gone, but I can, and will, be available with the welcome mat out and my mouth tightly shut.

There are several people I care deeply about who are facing some really difficult times personally or with loved ones right now. It can be really hard to know how to help without feeling like you are getting in the way, bothering the person, or maybe you are simply unaware of what is needed. So what do we often do? Walk away without doing anything at all because that is the easy choice. Oh the guilt comes for a short time with thoughts of “I really should help; I really want to help; I just don’t know what to do”. But let’s be real, sometimes it really is easiest to turn and walk away without doing anything at all. So let’s all do our best to take the high road, step in and turn our desire to help into action.

As a nurse I have spent hours at the bedside holding a hand, listening to fears and worry, wiping tears, and comforting family and friends. It can be uncomfortable, and sometimes – most of the time – it is a blessing to step into the place of allowing someone to be seen and heard. It comes down to one word – acknowledgement. When life gets hard, when difficult decisions must be made, when unexpected diagnoses cross your path, people simply need to be acknowledged. They need to be heard. They need empathy. They need you to just show up.

In my personal life, I have also faced some really hard days. Gosh, haven’t we all! Five years ago, Ryan had to be hospitalized for medication support while in status. His seizures were relentless, and after we had given two large doses of emergency medication in a matter of several hours, we had no choice but to pay a visit to the hospital for a couple days. It was one of the worst hospitalization we have ever experienced thanks to an apathetic nurse and incompetent doctor. Sometime after that stay, I wrote the following tips on how to lend a hand to someone who is trying to manage through a really difficult time.

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People often do not know what to do when someone is hospitalized or going through an especially difficult time. I want to share just a few things to consider when you want to help but are unsure how to do so:

1. Do not ask “What do you need? Can I do anything to help?” Just do it.  If you ask if a meal would help, I will tell you no.  I do not want to be a burden.  I do not want to feel like a victim or that I cannot handle this on my own.  Because I handle it on my own every day. Put your thoughts into action.  If you feel led to take a meal to someone or drop off a gift card, just do it.  I promise it will be very appreciated.  I had one friend bring two meals over with a very sweet card that essentially said “we are so sorry and are thinking of you”.  Simple and to the point.  Those two meals will be eaten this week as we recover from the stress and fatigue that takes days to get over. Another friend simply said “I am bringing you a meal and can do either Sunday or Monday. Which do you prefer?”  I answered her and did not have to have the ongoing conversation on what she could do to help.  Just today while eating dinner, a third friend stopped over unexpectedly with a big bag of food from Trader Joe’s and a beautiful fall plant.  I cried when I saw her because I was so stressed out and her thoughtfulness meant so much. When trying to maintain one child in the hospital and the rest at home, life is much easier when someone just says what they are doing for you instead asking what you need. And trust me, those gestures are so very appreciated!
2. Do not get mad or take it personally when I do not respond to you. If you ask me how I am doing and do not hear back, please do not text me again and say “are you there?”  Of course I am here, and I am busy trying to survive through the stress and changes.  I am trying to take care of my child and not think the worst.  I am trying to maintain my composure without falling apart at the seams.  I am dealing with doctors and everyone else who keeps coming in the hospital room. And I still have to stay strong for my other kids.  People who have children (or another loved one) in the hospital may have the time to respond, but usually they do not have the energy.  It is very difficult to say the same thing over and over and over again.  It is exhausting.  And lets face it, family comes first.  I may call you one of my very best friends, but I may not stay in contact with you because it takes all my energy just to keep my siblings and parents in the loop – and they need to know what is going on before anyone else finds out. Just because you do not hear from me does not translate to “I do not care about you”.
3. Do not tell me about every situation you have had with your grandma, dad, cousin and uncle. If the situation was different, and I was not sitting in the hospital with my child trying to just survive the moment, I would care and be interested.  But right now, in the midst of the acute situation I find myself in, I really do not want to hear about what worked for your relative.  I do not want you to comb through all the choices we have made for our child and dissect what else we can do or the latest and greatest new technique or medicine you found on the web.  Please just listen and be present in my pain and concern for my child.  Please just show support and understand we are doing the very best we know how to do.  We have to make decisions, and we worry all the time that we are making the wrong one.  Hearing about how your uncle saw a doctor in the next state over is not pertinent to what I am facing right now.  I do not intend to sound self absorbed and self centered. And I definitely do not intend to come across as an insensitive friend when you chatter on and on, but honestly, I do not want to hear it right now.  Please just respect the choices we have made for our family.
4. Know that even when I do not say it, I really care about you. I appreciate the prayers.  I need your support.  Sometimes I feel like a complete burden and worry about what others think.  I am weak and I am imperfect, but I am doing the best I know how to do. Sometimes the emotions and stress are just too much to bear. Your love and support is invaluable.  I am just not always good at verbalizing it.

I hope these tips are received well, and I say them with good intentions. Whether a person or family is facing a difficult time with someone in the hospital or they have lost a dear family member or they are facing the loss of a job or whatever it may be, being present is the most important thing you can do.  Your actions speak volumes.  Your listening ear is appreciated. Your acknowledgement is a precious gift.  It is easy to feel helpless, but when heartache and stress come, love can be expressed in many ways to show support. Again, do not ask. Just act.

On a cold, snowy December day, movers came to load furniture and carefully organized boxes for the drive from Lincoln to Papillion. It was with much thought, analysis and emotion that we made the decision to leave our home of 19 years where we raised our kids. Those four walls witnessed so much love, chaos and laughter throughout the seasons. So many of the memories embedded in my mind and heart were created there. So many unexpected challenges occurred in that house as well. It was difficult to leave the safety and security of a known and worn home. We were blessed with the opportunity to build a house to meet our youngest’s needs – bigger doorways, an open floor plan, and a zero entry walk in shower to fit his shower chair. We placed furniture, organized spices and canned goods, unpacked towels and cleaning supplies, hung clothes, and rearranged decorations.

Before we moved into this house, we lived in an apartment for five months after our house sold in less than 24 hours. During that time of transition, we prayed fervently for our new home to be a place of love and acceptance. For everyone who enters our home to feel the love of Christ. For these walls to be a safe haven where people can be real, feel accepted, and find peace. We gave it to the Lord and said, Your will be done with this home.

But where I found myself, where my thoughts and motives wandered to was a desire for perfection. Within only a couple days, I found myself needing to have everything just so with nothing out of place, everything perfectly matched and decorated. It was a completely unsettling feeling, and my countenance mirrored what my heart felt – stress over the very trivial and minor details that really do not matter. One of the internal battles I faced was over my kitchen table. For many years, we used my parent’s old table which had seen better days. It still had the knife marks from my younger days when I scratched my butter knife into the wood. It was banged up, bruised and glued together. Two years ago after months of searching and saving our money, we bought a new table I had eyed for over a year. This table in my dining room is one I waited so long purchase, and it has meaning to both Travis and me. It is a symbol of sorts – while not a need, it is a cherished blessing. So here I was, getting upset and critical of this table because it does not perfectly match my kitchen counters which are a beautiful mix of greys, creams and browns with specks of black. I wallowed in regret and mentally flogged myself for not picking countertops that would perfectly match my table.

And then I was gently reminded of those specific prayers we prayed for months on end. Where exactly does my table fit into all of that? How does it matter if the stain on my table does not perfectly match the kitchen counters? And why was I the only one seeing the “issue” and experiencing angst over this? Everyone else seemed to think it looks just fine.

Not long after moving in, my kids were here for a visit. I shared my heart with them, and how I was struggling with the desire of the flesh to live in perfection while my heart knew this is a first world problem that does not matter or even hold any weight of truth or relevance to life. And what one of them said to me was so profound – “Kim, this table is your Ebenezer”. I had to agree; this table is now my beloved Ebenezer.

What exactly is an Ebenezer? We have to look back to I Samuel 7 for context. During this time, Israel was attacked by the Philistines, but God gave protection to the Israelites. They won the battle, and Samuel, their leader, placed a stone on the battlefield and said to the people, “Thus far, the Lord has helped us”. The Hebrew word for Ebenezer literally means “stone of help”. Samuel set an Ebenezer on his battlefield – a stone as a physical reminder of God’s protection and help to overcome the fight. It was a constant reminder to all the Israelites of God’s protection and loving kindness over them that day. It was a way for them to pause and thank God for His faithfulness to them.

And so my table has become my Ebenezer. It is my reminder of God’s faithfulness in my life. And when I look at this table now, I see beauty. I see workmanship. I see God’s hand in my life. I see a battle won over the desire for perfection. The tears fall as I thank Him for my perfectly placed table to remind me life does not need to be perfect but should be lived with intention. I love this table, and the beauty it exudes because it is a picture of provision and protection. This “stone” where we gather to eat, to play games to converse and share our hearts is exactly that – a reminder of God’s help for our family. It is an integral piece of those prayers asking God to use our home to help others experience the love of Christ.

What is your ebenezer? What is your stone of help? Where have you seen God’s protection over your life? What challenges, hurts or maybe even selfish ambitions do you need to lay at the feet of Jesus in surrender? Where do you need a reminder of God’s provision and truth in your own life?

I Samuel 7:12 ~ Then Samuel took a stone and set it up between Mizpah and Shen and called its name Ebenezer; for he said, “Till now the Lord has helped us”.

This was written a couple months ago but never published….until today.

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We sat on the carpeted stairs leading up to our huge, shared room, talking about our life, our family, our luck. Me with my frizzy, chin length curly hair and braces. My older sister with her lighter, straight shoulder length hair and beautiful smile. I was always jealous of her petite frame and thought I was fat when really, I just had a different build than her. She is built like my mom’s side of the family – shorter, smaller builds. I, on the other, hand inherited my dad’s German build – more muscular, taller, big-boned as I used to say. We still don’t look much like sisters, but I adore my smaller big sister more than words can express. I only wish I could have seen the beauty of our differences instead of spending years in comparison.

So that day on the stairs of our big two story entry way right on the edge of Bellevue’s Fontanelle Forest with it’s huge swaying, protective trees…we sat together talking about life when one of us said, “We are so lucky….we really have the perfect life.” And in my eighth grade brain, a perfect life was a nice, big house in an expensive neighborhood; married parents with a stay at home mom; plenty of money for nice, stylish clothes; and lots of great trips around the country each year. I do not know where the conversation took us or why we went there to begin with, but I vividly remember the peace and contentment and security of truly believing we had the perfect life. Our home was peaceful with little fighting and lots of love to go around. Friends and family entered our home often with lots of yummy food and conversation. We played games, laughed a lot, spent loads of time together as a family of five – my parents and two sisters and me. We even had a teen line which back then was a luxury many of our friends did not have. My parents were very involved in our lives and attended all our activities. We went to church every week and grew up with a strong faith and good morals. My sisters and I were blessed to be protected from abuse and trauma that many have to face in their growing years. I do not know if we even realized how hard life was for so many of our acquaintances. I just knew I had a really good life – that I was blessed with safety, security and comfort.

My struggles began my senior year of high school. Combine a boyfriend I should not have been dating, an eating disorder and major depression, and life got hard really fast. My parents were smart enough to get me the help I needed, and by my sophomore year of college, I was happily attending school and doing well again. My husband and I started dating that year and then my mom got sick and was soon diagnosed with multiple sclerosis. That perfect childhood soon felt like nothing but a distant memory as my parents’ marriage fell apart. I became my mom’s guardian when she moved into a nursing home at the young age of 49 while the dreaded MS started to steal her mind. My sisters and I begged for a break from the heartache but that break never came as MS took our mom from us far too early. We all moved through the pain and sorrow of loss and found love and life again in marriage and parenting.

It seemed like no time at all before our fourth child was born which brought a whole new set of problems. Years of fighting for diagnoses, solutions, and calm led us to many new normals as we were challenged with surgeries, therapies, adjustments in medications, altered plans. Raising a special needs child was not on our bucket list of things to accomplish, but it is exactly what God gave us. To say it has been a long and harrowing road would be an understatement, but together we have found a way to press on and overcome each new challenge. We have found joy in the midst of sorrow.

And here we are so many years later — two married children, a new grandson, another son serving in the military, and our sweet youngest slowly declining and losing strength. We have been facing the long goodbye for many years now watching him lose his voice, his ability to eat and drink, his balance and his physical strength as various body functions fail and seizures ravage his brain ensuring every day is a new challenge with his health. Yet as the seasons change with growing children and continued medical challenges, life has slowly stabilized and become almost predictable these past few years. The heartaches have become farther and fewer in between; the financial struggles have dissipated; the worry over lost skills and abilities for our youngest have normalized; the joys of adult children have increased; and the blessings of a loving marriage built on commitment and longsuffering have multiplied.

So here we sit thinking back over the past 26 years of marriage, the past 23 years of parenting, the past 17 years of raising a profoundly disabled child. We feel so very undeserving of all we have been given in the provision of needs met, the blessing of supportive relationships, the seasons of calm and stability. And yet it is so easy to wonder over the next challenge and season of pain. It is as if we believe we are running out of blessings and peace, and a new season of hardship is around the corner. For many years we became accustomed to new trials and challenges expecting them one after the other. And now that life has brought a longer season of relaxation and rest from acute hardships, we find ourselves waiting for the next shoe to drop, for the next huge challenge to hit as if we do not deserve to have a long season of peace and blessings.

This season we find ourselves in is bringing a big change in that after 26 years in Lincoln, we are moving to Papillion. We are heading home to the familiarity of childhood experiences and memories. A brand new home awaits us that has been purposefully planned to meet our youngest’s needs. A new city with much to be rediscovered, a new church, and a new set of friends we have yet to meet are waiting on the horizon.

Yet with the anticipation for all that is to come, there is timid and reserved excitement paired with fear that we do not deserve a new home, new relationships and new experiences. Fear easily abounds and overcomes our mindset and emotions when not kept in check because a lie exists deep down that says we do not deserve blessings and seasons of bounty. A lie that says we were made for hardship and constant battles. But we know it is a lie. We know God promises life and liberty from trials. We know all our blessings and joys come from Him. In John 16:33 He says, “I have told you all this so that you may have peace in Me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.” We really are not here for comfort and ease of life; those things are not promised. As I like to say, this life is the closest thing to hell a believer will ever experience. As Christians we have eternity to look forward to where sorrow and pain and heartache will have no place.

So at the end of the day, when the quiet comes, when darkness presses in, when things settle in for the night, His promises are still true. While heartache and difficulties are an expected piece of this life, God also has many amazing promises of goodwill and blessing. And the two can co-exist. And we can rest in the midst of happy, stable seasons. And blessings can abound even if life does not turn out as we expect.

Some of my favorite promises are these:

You will keep in perfect peace those whose minds are steadfast, becasue they trust in you. ~ Isaiah 26:3

Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. ~ Matthew 11:28-29

For I know the plans I have for you, declares the Lord. Plans to prosper you and not to harm you; plans to give you hope and a future. ~ Jeremiah 29:11

The Lord will fight for you; you need only be still. ~ Exodus 14:14

If you openly declare that Jesus is Lord and believe in your heart that God raised him from the dead, you will be saved. For it is by believing in your heart that you are made right with God, and it is by openly declaring your faith that you are saved. ~ Romans 10:9-10

While we may not feel we deserve happiness, blessings and peace, we also know those are gifts from God. We know when more hardships come – because they will come – God will continue to meet our needs as he has done for the past many years. We know we can enjoy a new home. We also know when a new hard hits, God will provide and joy will always find us.

For many years I found myself living in a space of expectation. Yet it was not an expectation of something good. Rather, an expectation of moving from one hardship to another. From one stressful event to another. From tears over one challenging moment to another. As if I did not deserve to be free from difficulties for even a season. And now, I find myself in a space of routine. Where boredom looms, and my mind can easily slip to thoughts of what’s next? How long until another hard hits?

For so long, we lived as if we were constantly walking on hot coals as our youngest struggled with major developmental delays, relentless seizures and intense sensory issues. He would scream for no reason for hours on end. He would slam his head into the wall, the table, the person sitting next to him, requiring him to wear a helmet at all times. He was in and out of the hospital. He spent hours in therapies with numerous trips to a variety of doctors. And there was so much more that would take far too long to explain. All of this trained our minds to live in a state of constant upheaval and stress. There were many other unrelated events that occurred over the years also causing profound stress, adding to an environment of anxious apprehension. The challenges became expected, routine pieces of our days. It is hard to think about the days ahead, wondering what is next. Yet we relish the predictability of his diagnoses even though the challenges can be so very hard.

But don’t we all walk a similar path? Our situations, challenges and daily routines may look different, but we all have a cross to bear in life. We all face fears, stress and unknowns. We all wonder on our tomorrows. We all worry over family, friends, situations. The challenge is to find the beauty of each day and live in a state of thankfulness; to focus on the love that finds us and the blessings that capture us; to mark the beauty in the story that defines us.

So today as I find myself challenging feelings of guilt for not feeling like I have excessive difficulties and stress, I want to put myself into a place of thankfulness. I want to remember the faithfulness of a God who wrote my days. Who always supplies all of my needs. Who shows up every day when my heart doesn’t think I can take another challenge. No matter what we face or how difficult our journey becomes, our Heavenly Father always paves the way and shows up with an outpouring of peace. The One who is always steadfast, reliable, trustworthy and loving is the same God who allows difficulties to find us. He is the same God who is giving us a season of routine, mundane moments. And when the next messy comes, when the next heavy challenge arrives, He will be the same God who walks faithfully beside us.

My challenge is to enjoy the path whether the scenery is lush or barren. To focus on the blessings instead of the hardships. To relish in the provision instead of the unknowns. I am just as thankful for the seasons of difficulties and stress as I am for the seasons of mundane routine.

Every day is a gift. Even in the hard, every day is a gift. As I sit back this week and watch several around me struggle with a new diagnosis, a challenging situation, a season of hospice and impending loss, I recognize the responsibility to extend a word of encouragement, to breathe life into a weary soul, to share the gracious gift of empathy. I think back on the many blessings we received in our hard days. Friends and family who showed up to bless us with encouragement, gifts, food, just being present. May we all use the experiences we collect, whether easy or hard, to show empathy and love for someone else who is struggling on their journey. May we all find the strength and energy to be a supportive, encouraging friend to someone in need.

Romans 12:10-13: Be devoted to one another in love. Honor one another above yourselves. Never be lacking zeal, but keep your spiritual fervor, serving the Lord. Be joyful in hope, patient in affliction, faithful in prayer. Share with the Lord’s people who are in need. Practice hospitality.

Isaiah 41:10, 13: So do not fear for I am with you; do not be dismayed for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand….For I am the Lord your God who takes hold of your right hand and says to you, Do not fear; I will help you.

He said a cuss word, and I got upset. For whatever reason, I just had to point it out. Let’s face it and be honest. I was being judgmental. I asked why he had to use that word. And then he got upset. Because the night before, I had let out a long string of bad words. I was irritated. I was angry we were not communicating effectively. I was frustrated at the snippy words between us. And he did not point it out to me. But on this night for whatever reason, it hit me. I realized something that seems so very elementary. I cannot change him. I cannot choose his words for him. I cannot be his conscience. But I can change me. I can work on my attitude. I can be more aware of my words. I can make a heart change that will lead to a word change. I am the only me I can create lasting change in. It has to be my idea. It has to be my motivation. It has to be my will and energy that works to make me a better me. No one can do it for me.

You see, for a long time now, I feel like I have slipped. I have let my heart become sort of numb to my faith. I have let my mind move away from sensitivity to Christ-like behaviors. Come on now, we all do this sometimes, right? Really I have allowed my heart to move toward selfishness and hypocritical actions. I say I am a Christian, but I do not spend much time with God. I do not open my Bible and let it speak to me. I do not spend my time in prayer talking to my Savior and Lord. I do not set my mind on things above but instead on earthly things. In fact, Colossians 3 says it quite bluntly – rid yourself of all such things as these: anger, rage, malice, slander, and filthy language from your lips. It is right there in God’s letter to me – watch what you say. It goes on to say to clothe yourselves with compassion, kindness, humility, gentleness and patience…put on love. But really, in all honesty, how good am I at that? It is so much easier to grumble, to call someone stupid, to say a cuss word, to be impatient with another, to scream at the driver in front of me because I do not like the way they are driving, or to look the other way when someone has a need I can easily fill. And let’s not forget that big one I mentioned – finding fault in my spouse instead of focusing on my own issues.

After walking away from him with a pretty negative attitude, I googled “difference between a Christian and hypocrite”. And it brought me to Matthew 23 which is often referred to as the Seven Woes. Jesus is telling people not to be like the Pharisees and instructs them to stop being fake, judgmental, hypocritical, and the like. Then I read verses 25 and 26 – you clean the outside of the cup and dish, but inside they are full of greed and self-indulgence….clean the inside of the cup and dish, and then the outside will also be clean. That really struck me. How often do I worry too much about how I appear to others? I can be so focused on losing weight or getting in shape so I can look good. I think about how it looks if one of us says a bad word or he makes a joke. I worry over appearances and impressions. Yet, I should be more concerned about my heart. I should be focused on the health of my mind and the state of my spiritual self. When the inside is cleaned up and disciplined, the outer shell follows suit. So why do I have it backwards? Why do I spend so much time fussing and messing with the right outfit or obsessing over a bad hair day or saying the right thing to impress people? Is my spiritual wellbeing and attitude not more important? Is God really so concerned over me weighing a certain number or having the perfect outfit or owning the right house? In a week or ten years will those things matter? Boy I hope not. Instead, the words I speak to others, the fact that I am the only Christ some people may ever see and my witness as someone who calls herself a Christian – that is what matters. Those things are what have eternal value. I absolutely, without a shadow of a doubt, want to be known as someone who is sensitive to others, compassionate, filled with empathy, helpful, speaks beauty into others’ lives, and is positive and uplifting.

It is time to stop focusing on the things that truly do not matter, that will not come with me when I die. I will not have a backpack full of money or a list of amazing adventures or an award for the best physical appearance when I see Jesus face to face. But I will carry a resume of the choices I made with eternal impacts. I will be accountable for how Christ-like I chose to live and treat others. I will be questioned on how well I put my mind on things above instead of earthly things.

Priorities matter. Words matter. The state of the heart matters. The focus of the mind matters. Let’s spend our time and efforts focusing on the inside and let the rest fall into place. Let’s work to scrub the inside so the outside can follow suit.

Whatever you do, work at it with all your heart, as working for the Lord, not for human masters, since you know that you will receive an inheritance from the Lord as a reward. It is the Lord Christ you are serving (Colossians 3:23-24).

Wet, dewy grass meets us each morning with cheerful, sunny intent as the sun then fades away each evening into the silence met only by the playful sounds of insects and birds singing their way into the darkness of night. And such is the rhythm of summer. One day passes as the next one begins. Life is predictable like that. I linger on thoughts of my tomorrows, knowing some will remain on the worn, known path of predictability. Yet others come with surprising wonder and questions of what, when, why, and how? As moments turn into memories, as days turn into years, I have learned the art of enjoying, really relishing, the beauty and steadfast expectation of routine. Yet with that routine, new adventures and changes shake up my world and generally bring beauty and blessing especially when I choose to focus on all the good.

On a sunny day in March, Nathan Benson and our sweet girl stood before a crowd of loved ones and vowed to spend their lives honoring, loving and committing themselves to each other every single day. What a beautiful sight to see them smiling and gazing into each others’ eyes with big, excited smiles as they spoke their vows. It was a day to cherish. Their transition to married life as new roommates and spouses has been as expected – full of excitement, new adventures, never having to say goodbye, and grown up decisions – and at the same time, learning how to level set expectations and communicate well. Anyone who professes that marriage is easy has not experienced the committed decision it takes to daily die to self and steadfastly work hard to live as a team. What a blessing it is as a parent to witness two young adults loving well and living life together with intention.

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In excited anticipation, we now look forward to our oldest’s wedding in late August as he marries Taylor Orton – a beautiful, intelligent, engaging young woman who stole our hearts from the start. Brad and Taylor met at God’s Mountain, a summer camp where they are both in their third year as leaders. As Brad persists through his college years, he has three more semesters to complete, so they will remain in their known, familiar city of St. Joe for a while longer. We are excited to walk this journey with them. God brought a beautiful soul into Brad’s life, and we are certain He will bless their days as He has been faithful to do with Sidney and Nathan.

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There is no greater joy than to watch a child fall in love and discover the partner God intended for them from the beginning. I am honored to witness two of my children explore the adventures of marriage. Looking back to Travis’ and my early years, now over twenty five years ago, I smile and remember how very poor we were from a worldly standpoint, but how rich in love we were as we experienced the beauty of marriage and the parallel frustrations of learning how to make decisions together and communicate well. Those early years were both sunshine and fog all rolled up into one amazing package of discovery and growth together. Looking back, I see how intently we both worked to love well all while mastering the art of both asking for and receiving forgiveness. I would not trade those years because they created a foundation that has carried us through some beautiful, enriching, and equally dark moments. Life is full of change that comes as predictably as the steadfast seasons which find us every few months here in the Midwest.

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Just last month, Trevor, too, entered a new season. As his college years are upon him after walking the graduation stage, he made the decision to enter the military, more specifically, the Navy. To say we are proud of his decision is an understatement as both Travis and I come from families with strong military service. Because Trevor scored high on the ASVAB (military placement exam), he was presented with a wide range of choices, and ultimately landed on cryptology. Because of the narrow scope of his role and the low number of sailors who do that job, he will not leave for boot camp until December then will start his educational training in January. This last season of having him home under our roof is a cherished yet bittersweet time, knowing his days within arms’ reach are numbered. Yet each of us raising children are on the same path of the ticking clock, some just have more time on their side than others. This journey with our last to leave has been one of simple joy and unwavering pride as he has chosen the unpopular yet respected path of service to our country. We are excited to see where these next couple years take Trevor. If I am confident of only one thing, it is that this young man, the most independent, strong willed of our four, will succeed at whatever he puts his mind to. To say my heart breaks at the thought of him leaving home would be a severe understatement, but the parallel emotions of pride and respect equally lead me to look forward to his future.

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As I wrote in my last post nearly ten months ago, Ryan remains the same. The long goodbye continues as slowing speeds, yet the daily joy he brings to our family is a harvest of blessing and gratefulness for each day the Lord allows us to love on him. His sophomore year was relatively uneventful, and for that we are so very thankful. With all the changes within our family this year from the older three, we are glad Ryan’s world remains predictable and routine. He has become the steadfast, unwavering constant in our home. His squeals and cuddles are the expected sweet spot in our days as his seizures continue to fight for attention and time, robbing him of alertness and demanding much needed sleep. How he remains the warrior he has become is unexplainable, but his gentle, kind spirit remains a gift to all who have the privilege of caring for him.

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As summer presses on, as the heat waves come and go, as moments turn from active, engaging experiences to treasured memories of days gone by, I would be remiss to forget the faithfulness of God in the past and future events of this year. For our family, 2019 will be remembered as a year of change, a year in which we gain both a son and a daughter, as love grows, and maturity evolves our sweet children into young adults ready to make their mark in the world.

Much love from us to you all –

Kim & Travis

I am sure many of you faithful followers have noticed in the past couple of years how few and far between my posts have become. I remember days of continuous writing, often because our little boy was in and out of the hospital facing surgeries, infections, new tubes and seizures. There was so much to talk about his health, but also many changes occurring with the older three. And as seasons change, Ryan’s health and the speed at which the older three’s activities occur has slowed to a steady crawl. And when I sit and think about this blog, about what words are ready to spill from my mind, what emotions I want to reflect on these pages, I find silence. Simple, unmet silence. I often feel my posts are a constant repeat of the last, that steady, repetitious turn of the wheel. Life changes every day, yet every day it stays the same.

For Ryan at least. His life is like a song on repeat. One day ends and the same day occurs with a new sunrise. The sun sets and the next day it is the same repetitive occurrence. Ryan lives for car rides and cuddles on the couch. His seizures are like an old faithful friend and as bad as they have ever been with the expected fatigue that follows. He still sits and watches the world pass him by. He still loves toys that spin. He still chews on blankets. He still loves to throw everything within reach. His days of school are upon us as he returns back to the known halls on Tuesday. Ryan loves routine and will be ready when dad wakes him for his first day and says, “Ryan it’s time to get ready for school”. He often runs to the garage door still in his diaper and t-shirt after a long night’s sleep, hair sticking up in all directions and without his morning cares. It will take some time for this old, known routine to sink in and become more than a distant memory. We are so very blessed with paras, teachers and nurses who love Ryan and take such good care of him during the school day. Overall, Ryan continues his long, slow decline. He gets thinner and weaker as the seasons change. His balance continues to decrease and he grabs tightly on to whoever is beside him when he walks. His wheelchair is the constant helper. His right heel no longer touches the floor, a side effect of whatever degenerative process is occurring in his musculoskeletal system. He continues to grow in height, but he is so very thin. Even the VNS in his left chest wall sticks out, so prominently apparent. Even though his body declines, his spirit is strong. He does not laugh much anymore, and the smiles do not come out as frequently as days gone by, but he can still throw a mean temper tantrum. When Ryan makes up his mind it is time for a leisurely drive, it is an all out war to get his way. He screams and stomps and throws whatever is on the counter near the garage door. He opens and slams cupboard doors and continues to scream at the top of his lungs. Just this summer we had to buy a baby gate to keep him from going into the kitchen so he cannot break coffee cups and anything else in reach when he does not get his way. I am not sure he even understands the consequences of his actions, but without words, without the ability to express his wants, all he has are his actions. It really is no different than what a very small child does in the same situation, except Ryan has more strength and a better reach. Sometimes we laugh, sometimes we get very frustrated, and sometimes we simply want to cry because there is no reasoning with a severely delayed teenager who does not understand why he cannot go for a ride five times a day. In spite of the irritation that can easily overtake me when these tantrums occur, I still cherish them because I know they are only but a season and someday, I will wish for just one more. Today, I still get to drive the worn path of pavement that brings such joy to a boy who lives so simplistically.

Trevor is a senior if you can believe that. In three days he will head back for his last first day of high school. The years merge and fold together so quickly that time can no longer keep accurate count of the changes as the seasons pass at lightening speed. Like many moms, I often find myself wishing to go back and do some of those early years over again. Asking myself if I really soaked in all in. If I really understood the significance of each day of their youth. Because one blink, one slight move and suddenly they are grown and becoming independent young adults. Trevor has become such a sweet, engaged young man. Every moment with him, every conversation and meal eaten together is a gift. A cherished and loved treasure because I know I will soon stop, exhale, and watch him walk across the graduation stage. I am excited for his future, for the unknown years ahead he still needs to navigate and decide on. He has time.

Sidney is entering her sophomore year of college. She has had so many exciting changes in the past few months. Her summer days were spent as a nanny for two families. She even moved into her first apartment at the beginning of the month with a college friend. We snuck in some time for wedding planning and even bought the most beautiful dress for her big day. The first time she put it on, I could hardly catch my breath as I fought back the tears. I knew it was “the one” but did not want her to be impacted or pressured by my feelings so I held them in tight until she eventually made the decision to purchase the dress. It is perfect for her. The date is set, the big decisions are made and reserved, the wedding party is known, many of the decorations are bought and sitting in piles in the basement corner. Nathan finishes school in December, and together they are busy and planning for their future. It is an exciting time but the emotions tug on this mama’s heart as I watch them so happy and in love. Like her brothers, she has grown up so fast, but the discovery of this new relationship with young adult children is so rewarding and exciting. It is more advise and support than the teaching, guiding and governing of their younger years.

Brad is moving into his junior year and still loves Missouri. He spent the warm summer days at the same camp he was at last summer. Now moved back in to his house near the university, he is back to work and ready to see all his friends who left for the summer. Definitely the most social of all our kids, Brad thrives on relationships and connection. I am excited to see where this next year takes him. Trevor and I got to spend a day with him several weeks ago and had such a great time together. Just this week Travis and his parents went down and met him for a round of golf and lunch. He has not been able to come home this summer because of the camp schedule, but we are looking forward to seeing him again in the coming weeks. Labor Day will be spent as a family at the lake house, and I am so looking forward to three days of boating, swimming, games and laughter. The older they get, the more I cherish the opportunities to slip away and spend some uninterrupted time together.

As the kids leave home, the more grateful I am for the friendship between Travis and me. So often, as children leave home, couples look at each other and hardly recognize the partner standing in front of them. I am so thankful to have a husband and best friend whom I enjoy and look forward to spending time with. As we look on the horizon at the upcoming wedding and last graduation, we are considering moving to a new house. Our only trouble is deciding whether we want to stay in town or move to the country. There are many reasons to choose both options, but we have decided not to make any big decisions until the events of the next nine months have passed. Our jobs are good although my work environment has been very stressful. I am unsure what the future looks like there, but I know God has a plan, so I am trusting things will work out exactly as they should. Living in a state of unknowns is not easy, but I have learned over the years with Ryan how to do a new normal. Speaking of a new normal, check out Travis’ new look. I absolutely love it!


Late June found us in Orange Beach, AL, for a week of oceanfront family time. Ryan stayed home so he could enjoy routine and being spoiled by Willow and Taylor. The rest of us had a blast on the beach, sitting on the balcony listening to and watching the waves, the beautiful sunsets, kayaking, playing games and just enjoying a relaxing time away.

Much love to you all!

A season of change. A season of all things new. A season of anticipation. How strange it is to be in a season of life when nothing changes, yet everything is new. How do those two worlds even collide? Yet each day, that is where I find myself. On one hand, the calendar turns the page to a new day, yet all things familiar is what I see. Old Father Time comes to steal the moment creating a new memory in the banks of my mind. And yet in the routine of sameness and familiarity lies the excitement of preparation and planning and list making.

Just a few short weeks ago – May 3rd exactly – Sidney got engaged. Her best friend of three years asked her to be his wife, and on March 17, 2019, they will wed. Travis and I love Nathan, our fourth son, as he has rightfully earned his place in our hearts and in our home. He loves our daughter well. And she returns that same, familiar affection. The wedding planner sits on her desk with fresh writing and the collection of receipts starting to gather in the back pages of the book. The decorations have begun to pile in small stacks in the corner of the basement family room. The checks are being dispersed, and duties called photographer and DJ and pastor and reception hall are assigned and committed to the celebration. This season of looking ahead to decisions and new experiences is exciting and bittersweet all in one stoic breath as I try to celebrate all that is to come. At the exact same time, I suppress the desire to wish Father Time would grant just one more season of the messy bed that holds a little sleeping girl finishing another year of elementary school. Instead, the messy bed holds a growing young woman who is a sophomore in college with a shiny ring of commitment on her finger. It holds a girl counting days on the calendar until she moves out into her own apartment in two short months.

The oldest, our Bradley, made the choice to spend his days at God’s Mountain for a second summer. Marching into his junior year at Western, this growing boy who is passionate about the hearts of teenagers and fellow college friends is spending hot, sweaty, sunny days leading the camp interns and counselors. His passion and desire to work in ministry is as authentic as his relational, God-fearing heart. Brad speaks of his future with the common theme of “I don’t know” when asked what he envisions in two short years. His love of service and giving and acts of kindness may lead him to missions work after he walks the graduation stage. He may head overseas where he can teach and use his Spanish skills. He may teach in an inner city school. Whatever path he chooses, I am certain of this – Brad will extend a heart of giving wherever his journey takes him. Compassion encompasses the core of his heart.

Somehow just a few short hours ago, Father Time moved our sweet, sarcastic and bright third child into his last year of high school. Today Trevor finished his finals and officially earned the title of senior. His days of sleeping in, hanging out with friends, playing disc golf and working his part time job are here. I have experienced the senior-in-the-house phase twice before and know all too well the feelings of pride that weave together with strong emotions of sadness and loss. I am friends with the hot, wet tears that fall too quickly during senior season. I relish this last. Just one more to move on to college. This one last year to embrace, cherish and beg Father Time to slow down. I have worn this season twice before and know the familiarity of the emotions that tag along this last year. But this boy, this third child, this sweet love of mine, he is truly the last. Take me back, Father Time, to those days filled with the pesky three year old who flushed all his brother’s underwear down the toilet and would sneak up on the counters and steal treats. Those were busy days of standing guard, waiting for the next mischievous act. The years traded that sneaky, sweet boy into a genuine, lovable young man.

The big boy body with the little toddler mind finished his last day of freshman year on Monday. My sweet little Ryan is now a sophomore in high school which leads me to disbelief. At the end of the day where his soft brown curls meet his pillow, when I bend down to say my I love you’s and take in the nosy kisses and sweet smiles, I thank God for the gift of the broken boy. My eternal baby who will never leave the safety and comfort of his mamma’s home. Ryan is not sure what to think of summer days yet. He does not entertain the teenage game of staying up late and sleeping in. His days are set, and he does not deviate from the worn schedule of routine. Just this week I made a late night run for a baby gate to put between the eating area and kitchen. The big body with the little boy mind cannot comprehend that life does not operate on his schedule and wishes. He loves to yell and stomp feet and slam cupboard doors all in an effort to express his disdain for not getting his way. His way means going on a drive whenever the urge hits. We may come home from said drive and fifteen minutes later, he decides it is time for a second drive. This type of come and go game does not work well on parents who refuse to live at the beck and call of Ryan. Hence, the tantrums and expressed emotions. Life with Ryan means constant joy sprinkled with fits of frustration and grief. Yet the life we get to live with him in our presence is so very worth the moments of sheer frustration from the boy without words.

Travis and I are like a pair of old worn shoes – comfortable, known and reliable. We so enjoy our time together and treasure the friendship, love and companionship we have built over the years. The fight for time together can be difficult due to working different shifts, but we do it to take care of the broken boy. He is our priority. Each day brings thankfulness for the strength and silly fun we have between us. At the end of the day, we have each other, and I could not ask for more.

Much love to you all!

Working with disabled children and adults was not something I strived to add to my list of things-to-do when my younger self dreamed of the future and all it would entail. I never said to myself, “Someday I want to be involved in a ministry to adults with intellectual disabilities”. But to my defense, I also never dreamed of having a child with disabilities when I was young and dreaming of my future days. Yet here I find myself immersed in the world of disabilities thanks to my sweet Ryan. I still think back to the day in the early 1990’s when I sat on my sister’s couch and spoke of the premonition (otherwise known as the Holy Spirit’s nudging) I had that I would have a disabled child. God was working on my heart all those years ago when I was a young 20-something, newly married girl. And here I am twenty-something years later teaching an adult special needs Sunday School class and organizing the medical part of a quarterly respite night for disabled children and their siblings so parents can have a three hour break.

Let me tell you, sometimes ministry is messy. And when you deal with adults with intellectual deficits, it can be equally amusing. These folks are the best of the best. They are genuine, sweet, loving, honest to a fault, God-seeking, accepting, occasionally manipulative, independent, friendly people who simply want to be everyone’s friend and be included in everything. I cannot imagine my life without them in it. There are days when I simply want to sleep in on a Sunday morning and stay in my pajamas watching Netflix movies, but instead I get up and get moving because I know they will be there waiting for me to show up. One calls me Big Mama, and Travis is Big Daddy. When he sees us, he comes running with a big hug and a “Big Mama! I missed you! How is your son Ryan?” I cannot even begin to tell you how the nickname started, but it stuck. Some of these people do not have any family so our little church family is all they have aside from their workers.

Every week in Sunday School, we go around the table and give everyone a chance to tell us their prayer requests. This usually turns into a show and tell (often their Special Olympics medals) and a time to tell us about their week. We write down their prayer requests then one of the other class participants prays for that person. This routine takes us 30-45 minutes each week depending on how much people have to share. There are often tears, and when one starts crying, it often sets off an emotional show of support with one or two others surrounding that person with hugs and words of encouragement. The rest of us could really learn a lot from our friends in how they support and encourage each other. It is the most genuine show of support I have ever experienced. There is one man who gives the same prayer request every week – to get a girlfriend, to get a new job, and for his eyesight to get better so he can drive (that will never happen but he is persistent in his prayers). Another man’s prayers are always dependent on which Husker team played that week with details of who won. Sometimes he will throw in another team but always reports on the Huskers. Others have a hard time verbalizing a prayer request, but all of them express the desire to be loved and included. Just this morning one of our most quiet classmates offered to pray for a friend. It was the first time she has every prayed in class, and for some reason, today was the day she found the courage to pray. I do not care what number is given to assign intellectual abilities, everyone deserves to be respected, loved and included, and this group knows how to do just that. They have the same wants and needs as the rest of us. They celebrate accomplishments and cry over hurts and disappointments just like everyone else as well.

One of my favorite things about this class is watching Travis teach the lesson. He has a way of engaging everyone with his humor that no one else can replicate. He is a master at including the class participants with acting out the Bible story and can keep their attention when distractions loom. His lessons are just plain fun. He is the best at throwing a dance party into his lesson too. The last one was a Toby Mac song to teach our friends about worship based on the Psalms. I often wonder if any of them are really getting the lesson, but then months or years later, one of them will talk about an old lesson we did. As I sometimes reflect over abstract concepts and how much of the Bible really sticks, God does an amazing thing in their retention of His word.

This morning was one of those Sundays when things were messy and did not go smoothly, when all you can do is take a deep breath and laugh so you do not cry. One attendee showed up with wet pants and needed to be taken home to change. Another had an upset stomach and had to get a change of clothing after an accident. Then while sitting in the church service after Sunday School, the one with the sour tummy sat crying with his head on my shoulder either unable or afraid to tell me he was having significant stomach pain. When I asked him if he was OK, he said yes and wiped away his tears with the hanky stuffed in his shirt pocket. Only after I pushed the subject did he start sobbing and admitted his stomach really hurt. One of the class volunteers took him out of the service and drove him home. He is so sweet because he did not want to miss out, even if it meant suffering through pain to stay in church. Another kept talking, not whispering, at the wrong time not realizing how loud she was being as she tried to share things that could wait until the service was over. It is a fragile balance between letting them be as independent as possible and prodding to make sure their needs are met. The teaching of manners and appropriate behaviors is a never-ending job.

Also during the service, one of the youth in our special needs children’s ministry suddenly ran across the front of our church and up the stairs to the balcony. He had several people chasing after him and was finally contained at the top of the balcony. Several minutes later, he ran up onto the stage and was running all over while the worship pastor and team were trying to lead the congregation in a song. He then stood right next to the worship pastor and started speaking into the microphone. It was awkward but amusing at the same time. His mom and one of our class volunteers came onto the stage to try to convince him to leave the sanctuary. After a couple minutes, they were successful, and he did not make a third run into the church service. This is the messy side of ministry to both adults and children with special needs. They simply want to express their independence and do things their way. And that means a teenage boy with autism is going to escape from his class then run into and around the sanctuary at the wrong time. It means sometimes our adult friends clap and laugh at inappropriate times during the church service. It means one of our friends stands when everyone else sits and then refuses to sit down. It means some of the other church attendees learn to befriend these beautiful broken bodies while others stay as far away as possible. And no matter where people land on that spectrum of acceptance, it is OK. It is acceptable to be uncomfortable when one of our friends runs over for a hug and asks how they are doing. Learning to understand and accept and friend an adult with special needs does not come easy for some. But those who have learned the names of our friends, who extend the hug and ask how their week has been are so very blessed by the genuine love and concern of our friends with disabilities.

I cannot say this ministry is easy because sometimes it is not. Sometimes it is exhausting. Sometimes the drama is abundant and the appreciation is lacking. Sometimes trying to find a lesson they will understand is exasperating and takes hours. Sometimes we deal with messy pants and convincing them why they cannot pick their nose in church. Sometimes they interrupt repeatedly during the lesson and will not stop talking about how much they miss having a dog. Sometimes they have melt downs and are difficult to console.

Most of the time, though, the love is abundant, the laughter is contagious, the friendships are priceless, the stories are humorous, and the passion for everything in God’s Word is genuine. You should see these friends worship. It is an experience I would not miss for anything. They dance, they lift their hands in worship, they sing their hearts out, they play the air guitar and air drums. Sometimes they do not know the words because some of them cannot read, but they try their hardest even in their loud, off-key voices. I would not trade these experiences and friendships for anything. This class, these people, the ministry as a whole – it is the real deal. It is acceptance. It is love in action.

As the various seasons have come and gone, Ryan has experienced continual changes from surgeries and hospitalizations to new hardware and tubes. And for the past couple of years, his health has stabilized. Do not get me wrong, it has not improved, in fact, he continues to decline. But it is an expected loss of muscle tone and strength. It is a familiar decline in balance and verbalizations. It is a known change we have acclimated to. He is still experiencing negative changes to his health, but Travis and I have learned to accept them more easily. This weakening is a known road of experienced and expected turns.

Just the other day Travis and I sat on the couch discussing the past few years. I recently found a couple old journals and sat next to my love reading about past difficulties and stress as we navigated the unknown road of disability. Raising a child with continual medical problems is exhausting, lonely and emotionally draining. I remember years of withdrawal from friends as I sunk into a life of feeling unworthy and unequal. I remember years of financial struggles that I felt separated me from those around us as I allowed myself to fall into the trap of believing I could not measure up and provide for my kids like their friends’ parents could do. I remember years of comparison as I placed people quite unfairly into boxes in my mind – these friends were well off; these friends took vacations we could not afford; these friends had it so easy because they could go to movies and eat out at a moment’s notice – things we could not do with Ryan; these friends had bigger houses or newer cars than me. I was so unhappy and discontent in my circumstances and the path I was walking that all I could do was convince myself why everyone around me had it so much better than my family and me. I was so focused on all the things that truly do not matter – the material, temporary pleasures in life that do not satisfy the soul. And in my emptiness and state of constant assessment of others, what I missed what the blessing of provision. In the midst of surgeries and sorrow, struggling finances and wavering faith, I continually looked at the glass as half empty. I could not grasp the viewpoint that says if your glass is half empty, get a smaller glass. Perspective is everything. So as Travis and I sat together and reminisced over years of hard, we took the time to talk over God’s continued provision and grace. And there have been many of those moments.

We remembered August 22, 2010, when I journaled the following: There is no money. We can’t pay bills without dipping into credit and there is no credit reserve to use anymore. We have no savings except for $10. Ryan is heading to the hospital in the next two months or so for two brain surgeries and 10-14 days in the ICU. There will be no income at all during that time. We already have approximately $4,000 in medical bills we can’t pay. The deck is falling apart and we just found termites in it. We have bathrooms we can’t fix and other stuff around the house that is falling apart. I’m trying so hard to have the faith of a mustard seed. I don’t need a lot of faith to move a mountain. God is able to do far more than we can hope or imagine. Not my will but my Heavenly Father’s be done. My reserve is gone. I have nothing but to trust God to meet my every need. We continue to give God our first fruits in tithe even though we can’t pay our bills. Lord, use this situation in our lives for your glory. I pray you will deliver us from this oppression and bring glory to your name.

And provide He most certainly did! He did not take away the difficulties, but he provided. Though the highs and lows came like the ocean’s tide, His provision never faltered.

June 10, 2009: Today our mortgage payment is due, about $544. I looked at the account online this morning knowing yesterday we only had $401 in the account and that I needed to somehow get a deposit in early today to cover the mortgage. Well, this morning I discovered a $45 balance and the mortgage payment had come out yesterday. Absolutely impossible, but possible with God. He provided even though I cannot wrap my human brain around it. The math does not add up. Praise God for His provision. I am so unworthy but He is good! Thank you God that your mercies are new every morning. Great is Your faithfulness to me!

Sometime long ago, I do not remember which year, we had a pastor show up at our door unexpectedly with an envelope in his hand. He said the pastors at the church we were attending knew we had been going through a difficult time with Ryan, and they wanted to do something to bless us. In the envelope were two tickets to the Family Life Marriage Conference in Omaha along with two nights at a local hotel plus extra cash to pay for food.

Another time a friend stopped by to give me a book she thought I should read and bought for me. After she left I flipped through the book and found a check for $500 in it. We also had other moments when anonymous checks showed up in the mail or friends would show up at the door with food, flowers and gifts for the older kids. Pastors have stopped over to pray for our family before surgeries, and acquaintances have sent encouraging notes in the mail.

Years ago, Travis was an elder at the church we were attending, and we went over to someone’s house on a Sunday evening for a meet and greet dinner with a pastoral candidate, his wife and a number of other leaders from the church. The wife of the candidate told me as she and her husband were flying to Nebraska just two days earlier, she was praying about the visit and said God gave her a message which she wrote down. He said, “while you are there, look for Kim. Embrace her tightly. Encourage her with my love. Let her know that I see her, her longings, her disappointments, her hurts, her struggles. I will lift her up. I will lift her up.” She sat there at the table next to me with tears in her eyes and said all weekend she was waiting to find Kim. And that night, on her last night in town, she finally found me. I sat there staring at her in complete awe, stunned with the raw emotion of complete shock that God would use a stranger to send me a message of hope. Even now, all these years later, I can still barely grasp the creative ways God chooses to speak.

There is a book called Beautiful Things Happen When a Woman Trusts God (Sheila Walsh) and in it she says to learn the art of “rehearsing your victories”. I love that statement because it is a beautiful picture of exactly how each of us should live every single day. Instead of focusing on all the things we do not have, instead of comparisons and judgement, instead of seeing the glass as half empty, we should all live each day keeping track of the victories we have experienced and logging the experiences of God’s faithfulness in our lives.

Sheila also says this in her book: For as long as I can remember I have been waiting for the other shoe to drop. Perhaps you know that feeling. It’s an insidious intruder that whispers to us whenever we begin to feel hope again. For me, I was afraid to be happy because I assumed at that very moment I finally found happiness, there would be a thud.

For years I lived a life exactly as she described – waiting for the other shoe to drop. Waiting for the next bad thing. Sitting in expectation of the next loss, the next hard, the next financial blow, the next health crisis. And what I found, what I have had the joy of experiencing at every bend in the road on this journey, is that no matter what my day looks like, no matter how much stress presses in on me, no matter how many times God blesses us unexpectedly, He is as present in the storm as He is in the beauty. He is as faithful in the low time as He is in the victory. He is as near in the uncertainty as He is in the blessing.

Years ago when we were first married, my older sister, her husband and I were sitting in their family room chatting about our futures. Carrie and I got married just nine weeks apart so we were in the same season of life – newly married, dreaming of our futures with children, exciting careers and all the changes life brings. We were excited and spoke of our hopes for our days ahead. And in those moments of planning and daydreaming, I told my sister and her husband that I had the strange feeling one of us three sisters was going to have a disabled child. We all kind of laughed and thought is was a weird premonition. But years later, after five children between us, God gave Travis and me our sweet Ryan. And then came his broken body and years of ups and downs. I forgot about that moment way back in 1994 or 1995 when I had the peculiar thought about having a disabled child, then one day the memory came to me. And that moment of awe brought the realization that all those years ago, God was preparing my heart for Ryan. He was working in me for the ups and downs to come. He was giving me a little piece of what my future would hold even when I did not realize it at the time.

Now all these years later, Travis and I revel in the blessing of provision. We have come such a long way. God has blessed us with stability in our jobs. He has provided financially and allowed us to have a season of comfort where we get to be on the giving side of things and bless others. He has handed us peace when difficult moments come. He has given renewed hope for the future. He has created dreams of caring for disabled adults in the years to come.

Through the tears and sorrow of days past, I cannot discount the many blessings and lessons learned from a loving Father who has met us at every turn, who has carried us when the load was too heavy to carry, who has gifted us with family and friends to join us along our journey. We have experienced many highs and lows, and I can honestly say I would not change a thing because I have fully experienced a loving Father who most certainly has my back and has faithfully provided for our every need.

Jeremiah 29:11-14 ~ For I know the plans I have for you declares the Lord. Plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me and I will listen to you. I will be found by you declares the Lord, and I will bring you back from captivity.

In a few short weeks, some family and I will be in Las Vegas to walk and run the Rock N Roll Marathon. We will stand on those harrowed streets where death swept through the spaces of people and carefree spirits, where music danced in the air to the sound of bullets whizzing by, where evil moved in the darkness of the sunset. It is simply impossible to make sense of such horror as one searches for any semblance of reason behind the nonsense. My heart breaks for those who were forced to endure the sights and sounds and fear in the air of the greatest mass murder in American history. It simply is not fair. Justice will never be served for the lives taken. Justice will never be found for the hearts and minds forever changed by the experience of such a terror.

Yet in the midst of this horror, when tragedy has become the American way, there is peace. I found it the other day in my 5.4 miles with God. I found the peace that surpasses understanding. I dwelled in the presence of everything Holy. I touched the healing power of complete surrender. In the middle of that 5.4 mile walk, when it was just me, God and the sidewalk, a song came through Pandora I had not heard before. It was Frontiers by Vertical Worship. Have you ever had one of those moments when you just know a song plays at just the right time because you need to hear it? That was me on the pavement, moving forward one step at a time. As I counted the miles and reflected on how far I had walked yet still had to go, I realized how easy it is to look back at where I have been. How easy it is to focus on the failures. To count the number of times I have said something like this, “Tomorrow will be different. Tomorrow will be a fresh start. Tomorrow will be the beginning of the change I need right now”. Only to reach tomorrow and walk in those same steps I took yesterday and so many other yesterdays before.

The song says this:
I cannot feel Your love so strong and still
From where I’ve hidden
I cannot hear Your voice above my will
But still You listen
And all the while
You call me to Your grace
All that I undid fades
Lead me to the end of myself
Take me to the edge of something greater
I am standing on the great frontiers
Of Your love, of Your love
You have overcome my deepest fears
With Your love, with Your love

I love these seven words: lead me to the end of myself. And then these: take me to the edge of something greater. Because that is what I face every day. It is what we all face every day if we are truly willing to look deep into the depth of our souls and realize our will is strong. Our desire to hide the things that shake us up and cause us to stumble is great. Those hidden struggles that suck the life and energy out of us. As my feet hit the pavement, one step in front of the other, I was in awe of the song God put through my ear buds at just the right time. I so needed to hear this song. I so needed the reassurance that even when I hide, when I feel like such a failure, He is there. He seeks me out. In those moments, I am reminded of His love for me. I am reminded of His provision. I am reminded of His sovereign will for my future. 

 The song says You have overcome my deepest fears. I think it is so easy for all of us to hide in our deepest fears. Satan wants nothing more than for us to fall into the trap of anxiety and fear. He wants us to sink in the pit of bleak tragedy and hopeless despair. When we fail ourselves, when someone breaks our heart, when people disappoint us, when that good thing does not pan out, God wants nothing more than for us to stand at the end of ourselves and lean into the frontier of His provision. God calls us to life and joy and peace and hope. In the midst of personal regrets and failures and feelings of impossible dreams, He is enough. In the face of tragedy and nonsense and unthinkable actions, He is enough. In the suffocating feelings of anxiety and fear and negativity, He is enough.

In those 5.4 miles with God as I trekked from one mile to the next, I sensed a peace that can only come from a sovereign God who promises to never leave me or forsake me. Change is not easy. It is painstakingly difficult. It is a mental choice to do the right thing. It is the deliberate decision to make the right choice, not the easy one. Sometimes it is the change of an attitude or outlook. Sometimes it is the change of an action or inaction. Sometimes it is the change of obedience.

I Corinthians 9:23-25 says this: I do all this for the sake of the gospel, that I may share in its blessings. Do you not know that in a race all the runners run, but only one gets the prize? Run in such a way as to get the prize. Everyone who competes in the games goes into strict training. They do it to get a crown that will not last, but we do it to get a crown that will last forever.

And Hebrews 12:1-3 says this: Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.

And when those good days come, when the joy spills over, when the happiness bubbles up, enjoy it. Squeeze every bit of positive, every piece of contentment, every moment of beauty and savor the gift. Nothing is promised. Whether good or bad, God holds our every tomorrow. He has our future and promises to never leave us or forsake us. The frontier of our future is known by our Jehovah Shammah –  the Lord who is there.

Change. Often difficult to grasp and accept, it happens to all of us. As the road bends and curves and the anticipation of what is ahead grows, the beauty of the moment can be forgotten in the thoughts of what is coming next. God never intended for us to live our lives constantly looking ahead or even looking in the rearview mirror at all that is behind us, wishing we could go back. Each season has such beauty all its own to be enjoyed and cherished. God, give me the insight to remember to take in the moment and savor the beauty and uniqueness of each season.

This week has been a week of forgetting to enjoy today. I have spent far too much time looking back at all the years behind me, remembering the messes and celebrations of the “firsts”. Those years are precious but focusing on all that once was is not good for the soul when the season of today looks nothing like the moments of all the yesterdays that have passed. Yet I can also get caught looking ahead to all the tomorrows where my mind plays the “what if” game. Creating scenarios and situations that may never occur is a precarious, dangerous place to land. I have no idea what my – or my children’s – tomorrows will look like, and I do not want to spend my time focusing my energy on things that have not taken place yet. With only one child left who will one day leave as the oldest two have done, the years of family dinners and “where will you be?” and picking up dishes and organizing schedules are nearly gone. They are slipping away. My calendar counts two more years before he leaves for college like the older ones. Two years sounds like a lot when they are young, but as birthdays pass and independence grows, those years pass by faster and faster. The seasons blend together so quickly I can hardly catch my breath preparing for the next thing.

This week brought goodbyes as the two oldest headed to school. One out of state and one at the university. While these are expected seasons all parents prepare for, the heart just cannot keep up. Missing days gone by does not cease when they are potty trained or can ties their own shoes or can drive their own cars. Interest in their activities, pride at their accomplishments, and the anticipation of the open door to bring them home at night does not diminish with age. A momma’s heart still needs hugs and I love you’s and talk of the day’s events and details of their lives. Yet as the bags are packed, the schoolbooks bought and the backpacks filled with calculators and notebooks and pens, the tears begin to roll quietly down hot cheeks wishing for those old days long gone. Just a little more time. Another chance to celebrate the lost tooth, the first day of school, the awards and the games attended on rainy, humid, sticky nights.

What a chasm my heart experienced this week at the loss of two littles moving on with their lives, preparing for their futures, growing their independence. Yet the junior still departs every morning and comes home every afternoon. He still has stories and questions and asks for approval to go out with friends. He still needs home cooked meals and papers signed for school. He is growing in independence too, but his dependence on parents and the warm bed in the basement is still there. Two more years. Please time, slow down, and let me remember to enjoy these moments. Please mind, help me enjoy the frustrating days as much as I enjoy the good ones. And when the big ones, the college kids text or call, please heart, help me to be supportive and loving and show interest in every part of their journey.

Just last night, my sweet husband and I were in the kitchen talking. As he sat on the counter listening to my heart, watching the tears roll down my cheeks, we started to talk about the years to come. Those days of quiet with just the littlest, the one with the broken body who will never leave our home. Those days when it will be quiet and still in the house. Those days when the driveway and street are empty of known cars and there are no shoes strewn across the tile on the entryway floor. We talked of hobbies and interests and volunteer work and dreams. We looked to our own futures and what we want to see in the coming days. We discussed the importance of friends and spending time with others. We planned activities and hobbies and social groups. And at the end of the day, when my head laid on my pillow and I settled into the sheets, I was thankful. My heart was full. My tears had dried. My mind was clear. My thoughts were positive. Because in the darkness of night, I realize how very blessed I am to enjoy and love the one God gave me to spend my remaining days with. My children may grow up and leave, but he remains. The seasons may change, but there is still beauty in all my todays. The dependence on me may lessen, but the need for a momma’s love and affirmation will never diminish.

Just as it says in Ecclesiastes 3 – Yet God made everything beautiful for its own time…..people cannot see the whole scope of God’s work from beginning to end….there is nothing better than to be happy and enjoy ourselves as long as we can.

And Psalm 37 says this – The Lord directs the steps of the godly. He delights in every detail of their lives. Thought they s tumble, they will never fall, for the Lord holds them by the hand. Once I was young, and now I am old. Yet I have never seen the godly abandoned or their children begging for bread….their children are a blessing.

I can hardly believe summer has come and gone since I last updated. I often ponder over this site and end up not updating because I simply do not see anything interesting or worth speaking of that would catch anyone’s attention so I move on to the next thing. In my reflection, I realize there are many people who deeply care for our family and want to know how Ryan is doing as well as the older kids – all of us really. I need to do a better job of staying abreast of changes in our family and update this blog more often. I will certainly try, that I can say.

So, what have we been doing for the past three months? Some days it feels like absolutely nothing is the right answer, and on other days, it feels like I cannot get off the merry-go-round. I know we all feel that way at times, but as the kids get older, life just gets easier and slows down. There are days I know my kids are out there living full, busy lives yet I am sitting at home looking outside at the lush, greenery in my yard and listening to the sounds of the world pass by. And many days I am fine with that scenario while at other times I catch myself longing for days gone by when the kids were running around the backyard in their swimming suits jumping in and out of the pool, friends coming and going, while intermittently running up to the backdoor begging for popsicles or a drink of water. Those days of peanut butter and jelly smeared on the kitchen table and banana peels hanging half way out of the trash are long gone. In their place are car keys on the hutch, make up on the bathroom counter, and adult size shoes next to the front door.

Travis and I have had several conversations about what life will be like in two years when Trevor leaves. We joke that we need more hobbies, but in reality, we really do need to make sure we have things we like to do together that will keep us connected and happy as we transition to the empty nest. And yes, Ryan will still be home as he will never leave, but there is an element of difficulty in trying to move on with our lives and focus our days on doing things Travis and I enjoy when Ryan is so limited in what he can tolerate. Travis and I do not have the luxury of just jumping in the car and taking off for the weekend nor can we do something random and unexpected without planning head for someone to watch Ryan. While I would not change the circumstances of my daily life, we realize planning ahead is essential for Travis and me to be able to go enjoy life together.

The last post I wrote was just a day or two after Ryan was discharged from the hospital after surgery to place his mitrofanoff (catheter in his belly button to drain his bladder). I am happy to say the procedure is well, and he tolerates being cathed just fine. There are days when he gets feisty and does not want to be messed with, but patience generally pays off, and Ryan eventually realizes this procedure is not optional so he gives in. He has been very awake this summer for some reason which is a nice change. He used to sleep for 14 to 18 hours a day or more, but now he is down to about 12 hours or so. He takes short power naps instead and has rediscovered his love of opening and slamming the kitchen drawers and cabinets. I can honestly say I never thought we would have to put locks back on the kitchen cupboards for a 13-year-old, but we recently did just that. The biggest change for Ryan is that he will attend school all day starting Monday. It has been at least six or more years since he has attended a full day of school because he had been sleeping for a minimum of 2-3 hours in the classroom so we decided to keep him home in the mornings. It did not seem right for the schools to pay a para to watch him sleep when he could do that in his own bed. To say I am emotional about transitioning to all day school on top of him attending a new school is an understatement. We love Southeast and know Ryan will be in good hands, but it is still hard when he is vulnerable and medically fragile plus no one there knows him. It is not as if he can speak for himself, but we trust he will be in good hands. We just met with some of the staff at LSE this week which eased some of my anxiety, but Monday morning will definitely bring an emotional, teary drive to work after I drop him off. Travis will go to school that first day around noon to make sure the nurse knows how to do his mitrofanoff cares, and thankfully both nurses have experience with this type of catheterization from a previous student. Most people – including doctors and nurses alike – have never heard of nor seen a mitrofanoff which makes us uneasy as parents. Ryan’s seizures are still very active, but overall he is doing as well as can be expected. His strength and balance continue to decline, and he really does not walk anymore except when we force him to do so. Even then, he cannot walk without hands on assistance. But as we have always said, we only wish for him to be safe and happy which he most definitely is.

Trevor is heading into his junior year which is known as the hardest of high school. I am certain he will do great. He is a low key, content teenager who is usually hiding out in the basement or off to his friends’ houses. This is the year when he needs to try to make some decisions over college and what to do with his life after graduation, and so far, we do not even broach the subject. Trevor has time on his hands, but he has no idea what his future may hold. With as much pressure as kids feel to plan their futures, we certainly want him to just enjoy these teen years and worry about college later.

Sidney started her summer with a trip to Mexico for fifteen days then went to Kansas City just a week or so later as a leader for a junior high mission’s trip. She had a busy summer working at HyVee and as a nanny two days a week. And now Sidney is heading off to UNL on Friday when she moves into the dorm. She is a mixed bag of emotions as most kids at this age are, but I can see and hear the excitement when she speaks of college. I am certain that once she gets settled and makes it through her first week or two of classes, she will love it. Like any move to something new, it takes time to feel settled and confident in the new pace and routine. Her clothes are not yet packed, but one of the basement couches is piled with things for her dorm. It has been hard this summer watching her prepare to leave, and even though she will still be in town, she is moving on to the next stage of life. She will not be present every day, and her absence will greatly affect the dynamics of our home. Travis and I are very excited to watch her thrive and know she will love college life. She is ready, and it is time for her to spread her wings and just focus on herself for once. She has always been one to focus on everyone else, and I told her this is her season of life. It is time for Sidney to be selfish and only think of herself which she does not know how to do. I cannot imagine very many other parents are sending their kids off to school telling them to be selfish and think of no one but themselves; to just do whatever makes her happy and put herself first. But for Sidney, who is very compassionate and puts everyone else’s desires, wishes and needs above her own, it is appropriate. I have no doubt my independent, strong, social girl will bloom this year.

Brad is home right now, but this is his first real stay of the summer. He told us last spring he was going to work at a summer camp, and I will be honest I had a very hard time accepting that decision but I supported him fully. As my first to leave the nest, he was supposed to come home one last time for the summer. I thought I had more time. I wanted to keep him within arm’s reach just one more summer before he left for good. And that did not happen. Once I saw the pictures and videos the camp director posted on line after each weekly camp session, I realized just how happy he was. I saw the smiles on his face; I imagined the lives being changed. Brad was an intern as a small Christian camp in Missouri and spent the summer in a leadership role over the camp counselors. He also played the drums during worship and led some of the Bible studies as well as many other duties that kept him busy. It was a fabulous summer for Brad, and he really enjoyed his time at camp. He is now home for a week to ten days then will return to St. Joe to get ready for his second year. Brad is living in the BSU house (Baptist Student Union) with three other guys, and I know he will love it. As much as I miss him, I am so very thankful he is thriving and enjoying this season.

I remember when Brad was a senior in high school just two short years ago. It was football season and the team was playing out of town. After the games, the parents always gathered by the bus to cheer the boys on and feed them before they loaded the bus. As we stood there waiting for the boys to exit the locker room, several of the other moms and I were talking and one of them said she wished parents understood how great the college years are. I never really understood that comment, but I never forgot it either. And I am finding it to be true. While they leave our home, their need for parental support really kind of grows instead of diminishing. It is just a different kind of need. Brad still relies on me to help him order his books, and while he can certainly do it himself, he knows I love to do it and want to help, so he lets me. I still buy him school supplies and send him home with food and anything else he needs. While he may not lay his head down to sleep every night, and Sidney will soon do the same, they both need to know we are here whenever they need us. I had to laugh a few weeks ago when I got a text at work of a shirt and jeans with the caption, “do these match?”. Even at 19, Brad still wanted my advice on whether his clothes match. And I will take it. Whatever I can get, I will take it. Here I sit on this beautifully cool August morning, thinking to Monday when school officially starts and begins the cascade of sending one off to school at a time. My heart begs summer to stick around just a bit longer, but I know it is time to move on to new adventures and another year of school. Losing two this fall and knowing they will not return is hard on this mom’s heart, but I am fully confident the relationships we have built with our kids are not defined by physical proximity to each other, but instead by the love, devotion and admiration we share.

This is Ryan on the drive home on Tuesday. He was wide-awake and happy as can be, and the next thing we knew he was sound asleep.

On Wednesday night, just 24 hours after getting home from the hospital, Ryan had a huge seizure causing him to stiffen his body and as a result, part of his Foley catheter broke off. All the water in the balloon came out and the Foley slipped out. Thursday morning Sidney and I made a trip to the emergency room with Ryan to have a new one placed. It was nice to go into the ER and be taken care of by a doctor and nurse whom I have known for years and used to work with. All is well now and we have acclimated to our new normal for the next two weeks with tubes and bandages and incisions. Ryan is actually doing remarkably well and healing nicely. He appears to be in pain at times, but those moments are few and far between. I can say now that we are through the worst of it, I expected this surgery and recovery to be much worse than what we have experienced. Do not get me wrong, it was hard and stressful. It is a blessing that Ryan has not been in as much pain as I anticipated, or he simply has a pain tolerance that is extremely high! Actually, it is probably a little of both.
On a different note, Brad is home from college this week, and we are all enjoying time with him. Yesterday he followed Trevor through his 18-hole golf meet which happened to be the last meet of Trevor’s sophomore season. Sidney is counting down the days until graduation, and like every senior, is completely “done” with high school. She found out she received a full ride scholarship for tuition, books and fees at UNL. We are very proud of her for her determination to go to school debt-free, and it appears she will be able to live in the dorms her first year without owing any money as well.

Happy Mothers Day to all you moms!

Ryan had a good day today. He is moving around a little more every day and does not appear to be in significant pain. It is obvious he is starting to get bored which is a good thing. This morning his nurses enjoyed seeing his true personality come out. They had been with him this weekend when he was very tired and not as far into the recovery period. Today he was playing ball, talking a lot, smiling and doing a lot of interacting. Of course he is still exhausted and sleeps a lot which is to be expected. The pain specialist/anesthesiologist team decided to leave his epidural in because if they take it out and he has significant pain, they will have to give him narcotics which is exactly what everyone is trying to avoid. The team will take it out Tuesday morning and then they will assess and see how he is doing. If he is managing his pain well throughout the day, he will be discharged tomorrow. No one is in a huge hurry to send him home, so we will just take it a day at a time. Hopefully home tomorrow though. He is up in the chair tonight, and Travis is with him while I am home with the older three. I will update tomorrow. Much love to you all.

Ryan has been much more awake today, but he has also been more uncomfortable and irritable. I think some of that is because he is moving around more and keeps sitting up then lying down then sitting up then lying down. He is giving himself an abdominal work out which has to hurt. We can’t explain to him why he should just lay still, and he has his epidural which helps though. That will come out tomorrow, and he is also getting half strength formula with the hope that slowly getting him back onto his full feeds will help decrease any G.I. issues. Brad is officially home from school for a week before he heads to camp. He came right to the hospital when he left campus, and of course it was great to see him. Ryan was so cute because Brad and Trevor were the last visitors to leave the hospital today, and when Brad went to give Ryan a hug and say goodbye, Ryan grabbed onto his arm and kept saying no. It was absolutely adorable, but also sad because it was obvious he has missed his brother. I love the connection he has with all three of his siblings. It is doubtful we will go home before Tuesday since Ryan still has the epidural plus he is not on his full tube feed schedule. And I would definitely rather stay an extra day to make sure everything is well before we take him home. We really planned on staying until Tuesday anyway. Here are a few pictures I have already posted on Facebook, but for those of you who only look at this site, you may enjoy them as well. The two at the top are from today, and that two at the bottom where he is in the bathtub and smiling are from Thursday before surgery. He definitely doesn’t have those big smiles right now.  Thank you for your continued prayers. Please pray Ryan will be free from pain and that he will sleep well.

Ryan has been very out of it today, but that is a good thing as he needs to rest and heal. He still has his epidural in which is a blessing as the anesthesiologist gave him an extra boost of drugs this morning. Unfortunately his IV infiltrated again. The transport team tried one in his arm that blew so his foot became the next target this evening. Hopefully this one will last. The poor kid has been poked seven times in 48 hours, and three IVs have blown.

Tomorrow Brad comes home from college for a week before he starts leadership training at the camp he will be interning at all summer. He is coming to the hospital then will head home from here. The other kids will be here tomorrow as well. Sidney has come every day and likely will continue to do so until Ryan comes home. I have really enjoyed her company as hospital life gets lonely at times. She knows him like the back of her hand, and it is nice to have someone here who can anticipate his needs and knows what he is saying when he growls or hits his head on the pillow. 

Please pray this IV in his left foot holds so we do not have to poke him again. It is so important for him to get the IV anabiotics and fluids as we are trying to restart his tube feedings very slowly. This afternoon he started at one third of his normal feed rate in his J-tube, but he is getting Pedialyte instead of formula in hopes that he will not get another ileus – another reason why the IV is so important to maintain. His bowel sounds are not very active so hopefully they will keep things moving and not stop completely.

I will update again tomorrow, but thank you for your continued support and prayers.

Ryan is back in the room and settled for the evening. Surgery lasted about 3 1/2 hours, and we are so thankful the surgeon was able to use Ryan’s appendix to connect his bladder to the stoma which is his belly button. That means he did not have to do a bowel resection and use a piece of small bowel for the connection. Ryan has an epidural to help with pain, but we are trying to avoid narcotics because of his history with bowel obstructions and ileuses postop. 

Your texts, prayers, and encouragement are so appreciated. This is been a very stressful day but we are thankful everything went well in surgery. Much love to you all.

Good morning!  Ryan is bathed and lying in bed watching Grandpa (my dad) and dad have a conversation. Travis’ mom should be arriving anytime now, and we are so grateful to have our parents here with us. Yesterday we got to Children’s at 930 AM and were happy to see a nurse who has taken care of Ryan in the past.  She remembered him, and we are glad to have her assigned to him again today. Yesterday the nurses tried twice to start an IV and failed both times.  They called the PICC nurse who used ultrasound to start one in his upper arm, and Ryan got his first two antibiotics.  While his fluids were infusing, he started getting upset, and we noticed his IV had infiltrated.  His poor upper arm was hard, red, warm and full of fluid.  So needless to say, our IV experience did not go so well yesterday.  The transport team came up to start a new one as the surgeon came in the room. Thankfully, he decided to skip the IV and just hydrate Ryan through his feeding tube.  He will get new IVs in surgery.

Speaking of surgery, he should be heading down in the next hour.  I will tell you that even as a nurse who understands a lot about medical procedures, I know this surgery is complicated.  I do not think I have allowed myself to accept the scale of complexity Ryan is facing.  We are praying the surgeon can use the appendix for the procedure because if not, Ryan will end up having a bowel resection to use a piece of the small bowel as the conduit from the bladder to the belly button which will be the stoma we will cath him through.  He will have a large incision in his belly as well.  When we can take him home, Ryan will have a suprapubic catheter stitched into the newly created stoma in his belly button to allow everything to heal and keep it open as well as a catheter in his privates for three weeks to keep his bladder empty during the healing period.   All this because the nerves to his bladder have failed.

Please pray he does not end up with a bowel obstruction or ileus as that is his history, and because his abdomen is being operated on and his intestines will be manipulated, the risk is much higher with this surgery. Pain control will also be an issue as the anesthesiologist is going to try to refrain from using opioids as they contribute to the ileus problem.  But that said, if we think Ryan is in a good amount of pain, we will be pushing for pain control over worry of a blocked bowel.  It will be a very delicate balance.  When he had an ileus after his fourth brain surgery in 2012, he was hospitalized for a month and ended up on TPN. I really do not want a repeat of that.

Please pray for our older kids as well.  They struggle every time Ryan is hospitalized, but this time they understand the complexity of the situation and how hard the recovery will be for Ryan.  That weighs heavy on all our hearts as he simply will not understand why he is so uncomfortable.  One of the kids is having physical symptoms because of the amount of stress which just breaks my heart.

Your support is such a blessing to our family, and we cannot express how much it means to know we have a strong, loving tribe around us.  I will update after surgery is over which will be a while as this is expected to be a four hour surgery not counting his time in pre op and recovery.

Much love to you all!

 

It was 1994.  June 11th to be exact.  As we stood before those who love us and whom we also love, we made a commitment to stay together til death do us part.  In sickness and in health.  We truly had no idea the rosy future we dreamed of for many months would some day look a little bit bleak like a rainy day that refuses to clear. We dreamed of happiness, laughter, little ones running around behaving perfectly.  We dreamed of plenty of money and no worries of paying bills.  We dreamed of amazing vacations and the perfect four bedroom, two-story home.  And for a bit, for a couple of months, we had our perfect life.  And then the wave of uncertainty and pain hit.  The wave of sickness crashed over my mom as she was diagnosed with multiple sclerosis, and  my parents marriage began to crumble.  The wave of divorce hit hard upon our family as the devastation of a family torn apart settled over my identity. The wave of a life lost enveloped us when our first baby died just 24 hours after telling all our family we were expecting.  The wave of anger swallowed me when my mom was admitted to a nursing home at the young age of 50 as MS ravaged her body, and I had to go to court to become her guardian. The wave of sorrow swirled around me when my sweet mom, one of my very best friends, struggled for breath drowning in wet lungs that suffocated her. The wave of shear grief was present as my sisters and I watched her die in that nursing home 3 1/2 years after she was admitted. The wave of confusion took residence in my heart as I tried to justify the unfairness of not having my mom to teach me how to raise my little growing family.  And yet our marriage survives.

Through the waves, through the tears, through the painful days, our marriage took hits from time to time. But we pressed on, never giving up.  We were blessed with four littles in five and a half years as our home grew in laughter, sticky fingers and messy spaces.  He loved his career in law enforcement working odd hours but enjoying every minute at home with our young family.  I was blessed beyond measure to stay home with our babies.  The days turned into years then the next crashing wave hit.  The wave of special needs.  The wave of deep sorrow and painful, hot tears. Those were exhausting years of changing diagnoses.  Intractable epilepsy, developmental delays, autism, genetic testing x2 with no answers, therapies, head banging and helmets, stress and more stress and even more stress, sleepless nights with a raging child, medication after medication, travel out-of-state for answers that never came, a feeding tube, special ed and IEPs, nine months driving to Omaha every day for three hours of severe behaviors therapy, tears and depression and financial ruin. And then, in the midst of the stress of raising a child with special needs, we endured the biggest devastating event an officer could withstand short of losing his life. And yet our marriage survives.

Then came the brain surgeries for constant seizures – three in eight days – and the right frontal lobectomy. Then the fourth brain surgery 14 months later.  And the stomach problems. Diagnoses and procedures like gastroparesis and ileus and neurogenic bowel and cecostomy and total parenteral nutrition. And yet our marriage survives.

So here we are.  Almost 23 years in the books.  We still laugh.  We hold hands.  We smile and kiss. We take trips to get away.  We fight for resolution when the disagreements happen because they do come.  We do not give up.  I rub his feet, and I hate feet. He brushes my hair because it relaxes me.  We irritate each other and stomp out of the room sometimes.  We cry together.  The hard times roll in. Those crashing waves almost drown us.  We say we want to give up.  But we do not.  And yet our marriage survives.

That day in 1994. That sunny, beautiful day when we said “I do”.  That day when my grandpa stood before us and gave us Proverbs 3:5-6 as our marriage verse.  At the time I thought, why that one?  Everyone knows that one.  I wanted something special. I wanted a verse that would awe me.  After all these years, through the trying times and the tears, that verse is powerful for us.  That verse is promise.  That verse is the cornerstone of why we continue to survive.  That verse says this:

Trust in the Lord with all your heart,
    and lean not on your own understanding;
in all your ways acknowledge Him,
    and He will direct your paths.

We just did not get it at the time.  We did not understand the impact those 27 words would have on our marriage.  We were deaf to the significance of the command to trust and acknowledge the Lord.  Yet that is exactly what saw us through the hard times when the waves threatened to drown us.  That verse is exactly what kept us going.  We did what it said.  We trusted. We did not put our faith and reasoning in what we saw before us.  We did not try to justify and alter His plan for us.  Today we continue to walk by faith even when it is so hard. And yet our marriage survives.

One night when Travis was patrolling the streets of Lincoln, I laid in bed sobbing.  Ryan was 16 months old, and we were having a terrible time with him.  I cried and screamed at God.  I called Him awful names and told Him to go to hell.  I told Him He sucked, and that I hated Him. I let God have it.  And then in my silence when words failed me and breathless sorrow encompassed my soul, I heard Him say these eight words that changed my world: He is as I intended him to be. My precious Ryan. And I simply knew it was true.  Something changed that tearful night.  Something in my spirit found renewed hope. Life did not get easier, but it became bearable. Ryan did not get better, but he became more valued. Finances did not get easier, but the bills were somehow always paid. Marriage did not require less work, but the little successes meant so much more. And yet our marriage survives.

Here we are nearly 23 years in.  Here we are 13 years surviving the tumbles and tears of raising a child with disabilities who continues to weaken and decline.  Here we are facing another big surgery in four days because another body system is failing our sweet boy.  Here we are facing the grief of another loss, another care, another responsibility.  And yet our marriage survives.

Statistics say couples with special needs children have an 80% divorce rate. While proven to be quite an exaggeration, it is true families with special needs children are closer to a 10% higher divorce rate than couples with typical children which is not much. We simply refuse to give up.  We keep working hard to give selfless love.  We share a love that has survived many tears and much heartache.  And more will come.  The difficulties and painful days are not behind us.  We know that. We will face it together like we have done in the past. And yet our marriage survives.

 

 

I love this time of year watching the vibrant changes as the picture outside my window springs back to life. This year we are occupied with golf and preparing for another graduation, just as we did last year.  But before we get to May 28th when Sidney will walk across the stage for the culmination of her high school years, Ryan will be heading to surgery.

Let me explain – Over the past several years, Ryan slowly lost his ability to stool.  For an unknown reason, his large intestine stopped working as we tried every possible remedy to no avail.  As a result, he had a cecostomy placed to keep his GI track moving.  The day after surgery, the surgeon came into our room and told us a neurogenic bowel and neurogenic bladder often go hand in hand.  He jokingly said, “if you ever need a Mistrofanoff, give me a call”. Little did we know just a short year or two later, Ryan would start to have trouble urinating. In November, I took him to see a urologist who did a kidney ultrasound and discovered Ryan’s kidneys look great so there was no explanation as to why he was holding his urine for very long periods of time. Of course we knew all along it is simply another unexplained neurological failure.  For the past several months, his ability to empty his bladder has began to slowly dwindle.  I have been doing intermittent catheterizations on him for six months, but he is still putting up just as much of a fight now as he did when we started all of this.  I cannot blame Ryan for not wanting someone messing with his privates, and we cannot explain it is in his best interest to cooperate.  For me to cath him, I have to sit on top of him to hold his legs down while someone else lies across his chest and holds his arms down.  If a home health nurse were to come in and do it while I am not home, it would then take three people to get this accomplished as a home health nurse is not going to sit on top of him to restrain him.  And it is not realistic or even possible to get that kind of help. As a result of Ryan’s inability to understand and cooperate with all of this, and because his ability to empty his bladder continues to decline, we have made the difficult decision to do a pretty major surgery called a Mitrofanoff or appendicovesicostomy. This is a surgery where the physician will take his appendix and make it into a tube that connects his bladder to his belly button thus creating a stoma to cath him through so we do not have to go through his private parts.  It is a long surgery, and Ryan will be hospitalized for five days afterwards.  He will go home with a suprapubic catheter from the newly created stoma to allow for healing then we will follow-up in three weeks to take that out and start cathing him.  The recovery is painful including bladder spasms for a few days.  Ryan will not understand why we are putting him through this which is difficult for Travis and me, knowing the pain he will have to endure.  While it is short-term and the long-term results will mean no fighting and restraining to empty his bladder, it is still difficult to put him through this.  Travis and I are always looking long term at what we have to do to give Ryan the best quality of life.  This is just the next step.

We are grateful for technology that allows for options such as this, but it never gets easier to put Ryan through another surgery.  It is hard to accept one more failing body system.  It is difficult to ignore the elephant in the room that tells us there is nothing left to fail that is not a major body system – heart, lungs, kidneys, liver.  He has stopped walking independently, and will only take steps when we force him to do so.  Even then, his balance is poor, and he requires assistance. And his poor brain just cannot get a break from seizures.  They just absolutely ravage him. As his body slowly fails and weakens, his spirit remains strong.  Ryan loves to be vocal and interact with others.  What a blessing it is to have him present with us even as he slowly fades.  He is a cherished treasure, and we are so very thankful for every day we get to love on him and provide for his needs. We do not take a single day for granted. But if I am honest….if I bare my soul and allow you into my heart, I will tell you I am tired.  I am so very tired of the constant fight.  I am weary from having to stay one step ahead trying to navigate and guess what his needs will be, of what next steps we have to take to keep his quality of life as intact as possible.  I am scared for a future of declining health and unknowns.  I know what is coming, but I cannot accept it today.  But thankfully for this day and the tomorrows within reach, all I have to think about is a surgery I do not want to put my child through.  A surgery I know is absolutely necessary. The rest is in God’s hands.  The future is His to decide.  And really, every day is His.  I know that.  I rest in that promise.  But it is still so hard.  Some days I am simply tired of the fight.  I want a break that never comes.  I want a respite from the cares and the oversight and the constant work to keep my sweet boy as healthy as possible.  And with all that said, I would not trade the gift of caring for him for anything this world could offer.  Even in the fog of stress, it is a privilege and joy to serve my sweet Ryan.

So in my fatigue and weary state of mind, I am asking for prayer.  Sending this boy back to surgery generates stress and worry for the older kids.  They do not say much, but I know the stress and sadness is in there, lurking just under the surface.  They worry and fear for the unknown. They love their brother without abandon.  And of course Travis and I are not looking forward to this either.  We feel the stress.  We share the grief of another loss.  We look into each other’s eyes and see the sadness Ryan’s failing body brings.  As every parent would, we want to save Ryan from this surgery, yet we know it is necessary and will benefit his quality of life.  So please pray for all of us as this hospitalization is looming in the next two weeks.  Trevor is in the middle of golf, Sidney is trying to tie up the loose ends of the semester while waiting to hear if she gets the scholarships she is hoping for and making graduation plans.  Brad’s last day of finals is the day of surgery.  Please pray for him to have clarity of mind and focus as he finished his first year of college. This should be an energized, exciting time for them without worry over their brother’s health swirling like the blowing wind throughout their days.

Your prayers are much appreciated.  Here are the details of this next surgery for those of you who want to know – Admission to Children’s is Thursday, May 4th in the morning for IV antibiotics and blood work. Surgery will be Friday, May 5th at 12:30.  Some have already asked how they can help.  The older three kids will all be home as of May 5th so gift cards for them to grab some food would be appreciated.  I am so very thankful they can all drive and have their own cars. It will be a bit chaotic, but as we have done many times before, we will all forge ahead and get through this next hospitalization.

Ryan has had many surgeries and admissions over the years, and every time, we have been surrounded by your prayers and support.  I only wish I could adequately express how grateful we are for those of you who have loved on us and been so very gracious. I only wish you could all fully understand how very loved and appreciated you are.

And we know that for those who love God all things work together for good, for those who are called according to his purpose. ~ Romans 8:28

 

Spring is finally here, and the plants in my yard are all coming to life.  I simply love this time of year when life seems to resurrect itself, and all the colors surface outside. Time marches on whether we want it to or not, and one look outside at the emerging growth is a tender reminder of the changes happening to those inside our home.

Brad is finishing his freshman year of college and is simply loving life. He is thriving and absolutely loves his friends and activities at Western.  Travis and I were saddened to hear he will not be coming home this summer, but after Brad explained what he wants to do, we got excited for him.  Brad is going to work at a camp in Missouri this summer supervising the camp counselors.  It is a camp for low income kids so he will not get paid, but the experiences will be life changing.  He is also going to the Dominican Republic for eight days in July during a two weeks break when he does not have to be at camp.  This trip will be a missions trip with BSU which is the student ministry he is very involved with at Western. Travis and I thought we would have one more summer at home with our oldest before he spreads his wings and makes his way in the world, but we were wrong.  As much as I would love to have him under my roof for just one more summer, one more period of time to love on him and spoil him, Brad is doing exactly what we have raised him to do – go out into the world and make his mark.

Sidney is excitedly counting down the days until graduation.  I still shake my head thinking back to the day in October of her sophomore year when she approached Travis and me and said she needed to talk to us, that we were supposed to just listen and not say anything.  She told us about her plan to graduate a year early and was just dead set in her idea.  After promising to give it some thought and not make a final decision for a few months, Sidney kept to her plan and is graduating as a junior with more credits than she needs.  Her drive and determination are amazing.  For a long time I doubted whether we were making the right choice by letting her graduate a year early, but now I see how ready she is, how her drive and maturity have prepared her for the next step.  Sidney is going to UNL this fall and will live in the dorms. I cannot wait to see how college life looks on my girl and am thrilled for the beautiful future ahead of her.

Trevor is back for his second season on the golf team and has another week before his first tournament.  He is happy and content and looking forward to what is coming in just ten more days – his 16th birthday!  Trevor passed his driver’s test over spring break so he is set to hop in his car and drive off.  I can hardly believe he is old enough to drive, but I am very excited for the independence he will have in such a short time.  Trevor is really like the youngest child and all of our “lasts” happen with him.  So while I am excited for him to be able to drive himself wherever he wants to go, it is kind of sad realizing no one relies on my to transport them anymore.  The only reason I need a van at this point is to get Ryan’s wheelchair from here to there.  Otherwise, the back seats remain empty as the kids drive themselves where they want to go.

Ryan has had some big changes in the past few months with med changes that are slowly decreasing his seizures. We just started the transition of taking him off the Ketogenic Diet as well as it is hard on his body and has not shown any improvements to the number of seizures he has.  With the new med changes Ryan is going through, he has become more talkative.  We became so accustomed to him being very quiet all the time, so this new noisy boy has been fun to see again but annoying at the same time when I am trying to concentrate on something.  I am not complaining because I absolutely know how precious the noise is. Unfortunately Ryan continues to lose systemic strength as his gait is more unsteady, his legs are weaker and his endurance is draining. It is the slow decline we have become accustomed to. He does not tolerate being out in public like he used to and in the last three or four times we have tried to go out to eat, one of us has ended up in the car with him because he could not handle the noise and activity much like when he was younger. It is not even worth trying to take him out in public anymore because he is so unpredictable, and we all just end up upset and disappointed. Regardless of what he can handle, Ryan is loved and spoiled rotten.  He lacks for nothing.

We are looking forward to seeing the finished product in the bathroom remodel currently being done in our bedroom.  It will be handicap accessible in just a few days because we need a way to bathe Ryan without having to lift him in and out of the bathtub which has become a monumental task for me.  Because he is now 5’3″ and well over 100 pounds, it is difficult to lift him from a sitting position out of the tub.  Our bathroom is the best option for a handicap accessible bathroom, so it is being remodeled.  I’m not looking forward to all the storage we are losing, but at the end of the day, what is important is for none of us to be injured trying to take care of Ryan.

Otherwise Travis and I are doing well. So much of our lives revolves around the kids as we are cognizant that our days with them around are quickly coming to an end.  We do make sure to get out and spend some time focusing on our relationship which is so very important.  I can hardly believe we will celebrate 23 years of marriage in just a few short months.  It has not always been easy because life is full of surprises and changes, but it has been a blessing to wake up every day and do life together. Not a day goes by that we do not count our blessings and remember all the good we have been given.

Much love to you all!

This morning while sitting in Sunday school, I got a text from Brad that his car would not start. And while this would usually not be a big deal, he is still in St. Joe and has not come home for Christmas break yet. It is the first time, as a first-time college mom, that I was helpless and could do nothing at all. I am so very grateful for parents who came to the rescue. Thankfully, they got his car started, and he is headed home.

After I got the news Brad was on his way, I began crying as I was humbled by God’s provision. I had just gotten into my car and heard the song Good Good Father by Big Daddy Weave. I am convinced God puts music on the radio that we need to hear at just the right time to remind us of His protection and provision. This is the first time I have had to deal with a situation where I was not there to help. Brad was truly in God’s hands. And even though there were other parents there who care about him and were there to help, it was just a huge trust issue for me to remember that he is the Lord’s first. And I had to say out loud as I was driving, “he is yours first, Lord, not mine, and I know You love him more than I do”. What a great reminder that the Lord cares so much more about our children than we do. 

This has been a very emotional week, and I am certain the emotions of the other events that have overwhelmed my heart and filled me with sorrow and grief absolutely caused Brad’s car not starting to seem worse than it was and amplify an otherwise minor dilemma. You see, I never imagined that over the years I would have to learn to do so many medical cares for Ryan. People do not think about these things when they decide to have children. I certainly did not sign up for this when we decided to have another baby. Watching him decline ever so slowly has been painful, but it has become our normal. I think in some ways, I do not realize the difficulty that comes with raising a child like Ryan because I have just accustomed myself to this lifestyle. But this week, as we discovered he is most definitely developing a neurogenic bladder, intervention is necessary….I simply do not want to face it. We now have orders to cath Ryan when he has not urinated for 12 hours and are just waiting for Children’s to deliver the needed supplies. You know, as a nurse this is a very simple procedure that I have done hundreds and hundreds of times. But things get very personal when I now have to cath my own child. I really cannot explain the emotion that goes into this new normal for us. I am not ready or looking forward to the discomfort it will cause my sweet boy. I am not ready to face a new normal that we will never escape. I am not ready to accept that someday cathing will be the only way he will be able to urinate as another body system shuts down. I am not ready to accept any of this.

So this morning, my oldest’s car would not start, and this mama’s heart just wanted her boy home. It was just too much as the two situations meshed together into one jumbled mess in my heart. It felt like one more thing not going my way; one more thing out of my control. The tears flow so easily today because I just want joy and peace in my home. I do not want to think about medical interventions and how scary they sound even when it is something that is so known to me as a nurse. It is known to me as a nurse, but not as a mom. And my dear, sweet husband can hardly stand the thought of having to learn to do this procedure.  So today, I just want all my kids under one roof. I want laughter and dancing and silliness. I want distraction so I do not have to think about or face this new normal with Ryan.  And having Brad home will make all things right in my little world even if just for today.

Through it all, I have a real sense of urgency in releasing my kids back to God. It is a daily process every parent must face, but I know in the depths of my heart that the Lord loves all of my children far greater than I do. We cannot understand the Lord’s protection and love for us. Who am I to doubt His provision? Who am I to doubt the hand of God as He has faithfully provided over the years? Who am I to doubt the mercies of a loving Father? It is easy to say I have faith, but putting it into action and making it a part of my daily routine, that is what takes work. And that is exactly what I am working on now – having faith that this new normal is not new to God and that He will carry us through until it, too, becomes routine.

Sometimes fear and uncertainty overcome my heart, and I find myself hurting as the tears so easily flow down my cheeks. In those moments, I have to go back to the Word of God. I have to return to the one thing in my life I know to forever be constant. I have to stand on the truth of God’s promises. I have to reflect on His goodness and provision in all things. I think of Psalm 91, my absolute favorite chapter of the Bible.

I will say of the Lord, He is my refuge and my fortress, my God in whom I trust.

The holidays are upon us, it is December already, and in another week the oldest will be home for a month.  This time of year passes so quickly; it is often hard to stop and grasp the significance of the season and give it the time and attention it deserves.  Just last week in our Masterpiece Sunday School class we discussed the account of Christ’s birth.  One of the class attendees said Christmas is about Jesus’ birthday while another said it is about His death and resurrection.  Both were right; Christmas is so much more than just celebrating Jesus’ birth.  More importantly, it is about celebrating the hope of eternity we all have because he came.

Life has been busy around here just as it has been for all of you, I am sure.  I had the opportunity to fly to DC to see my older sister on Veteran’s Day.  We spent two days in NYC which was fun as I had not been to the city before, and I truly enjoyed four days with my sister.  Just ten days later on Thanksgiving morning, Travis and I flew to San Francisco for four days. The kids stayed home by themselves and did absolutely great.  Ryan is so much work, but they all pitched in and took excellent care of him. I am so proud of those older three because taking care of Ryan is time consuming and can be overwhelming, but they did it without complaint!  He needs constant supervision, and his seizures can be so stressful on top of all his medications and feeding pump and diapers and baths and everything else that is required to care for him.  Travis and I were able to have a great time in the Bay area and enjoyed the time away,and I got to cross this trip off my bucket list.  My sister was gracious to have the kids over for Thanksgiving which worked out well, especially considering she lives in our neighborhood so the kids did not have to go far.  And best of all, they had a great day together.

Brad loves college and has been blessed with an amazing group of friends.  He is doing so well which makes me happy as a mom to see my oldest thriving and enjoying this transition to adulthood.  He is dating a girl who is simply beautiful – both inside and out.  It has been a blessing to get to know her just a bit, and we are looking forward to seeing her more over Christmas break.  I pray Psalm 91 over my kids all the time, and it is comforting to see the Lord’s protection and provision over Brad as he transitions out of our home and down his own path.

Sidney is plugging away at school and is the rock star student managing a full schedule plus three online classes so she can graduate a year early.  Some days I simply cannot figure out where she gets her energy; her drive and determination are commendable. She is accepted to UNL and is now spending a good amount of time working on scholarships as she tries to meet her goal of going to school for free.  Knowing her, she will figure out how to meet that one too!

Trevor is also doing well and is at that age when we hardly ever see him.  He is a great kid and is doing well with quite a busy social life.  Trevor turns sixteen in three short months, and I have to say I have never been more excited for one of the kids to get his license!  The older they all get, the more I realize what a convenience it is when they can drive themselves all over town.  Thankfully most of his best friends have already gotten their licenses which has been nice as he has been able to gain a lot of independence.

And then there is Ryan who keeps us on our toes at all times.  His seizures are still as out of control as ever which is nothing new.  I took him to see a urologist this past week as Ryan often goes 12 to 18 hours without urinating then when he does go, it is a flood.  I have suspected for some time that he is developing a neurogenic bladder since he has a neurogenic bowel and is unable to stool without his cecostomy.  The doctor said he agrees he is likely on the way to losing his ability to urinate which means we will have to cath him several times a day.  For now, we are waiting to find out the results of the ultrasound of his kidneys to see if there is any damage yet.  If not, we will keep an eye on his bladder function and as long as he is not getting bladder infections, we will keep moving along until his body says it needs help.  I have said for quite some time Ryan is losing strength and is slowly declining in his overall health; this appears to be the next thing.  We continue to thank God for every day we have a happy, relatively healthy boy as we recognize he could be so much worse.  We continue to face a new normal with each change, but God has been faithful to meet us at every turn.  I have to say, Ryan has taught me so much about living each day with joy despite my circumstances.  I love these verses – I Thessalonians 5:16-18 – and try to live each day in such a manner….Be joyful always, pray continually, give thanks in all circumstances, for this is God’s will for you in Christ Jesus.

Every day is a gift.  And honestly some are just easier than others.  Some seasons of life are much easier than others.  No matter what you are facing, God is so much bigger than your circumstances.  He is faithful, He is sovereign, He is simply enough.  I hope each one of you finds the joy of salvation this Christmas season and understands the hope of eternity that is only possible because Jesus came.

Luke 2:11, 14 – Today in the town of David a Savior has been born to you; he is the Messiah, the Lord…..Glory to God in the highest heaven and on earth peace to those on whom his favor rests.

Much love to you all!

Ryan has been status quo for quite some time now which has been such a blessing.  Saturday morning at 130 am, I woke to Ryan having continuous seizures.  Just before 2 am, I gave him Diastat, the emergency seizure medication we use when he has grand mal seizures.  He continued to have myoclonic jerks every 2 minutes for the next thirty minutes.  I wavered between calling 911 and praying he would sleep it off.  Thankfully the seizures stopped.  After a few hours of sleep, Ryan started seizing again, but they were not as bad.  Throughout the day, Ryan continued to have many seizures, much more than his baseline normal.  At 4 pm, he again had a significant amount of cluster seizures that would not subside.  I gave him another dose of Diastat.  The seizures eventually stopped but he did not sleep.  At 730 pm, after ten big seizures in a fifteen minute period, Brad and I loaded him in the van and drove to the ER.  Once we got in the van, the seizures stopped.  Brad and I sat in the ER parking lot for at least ten minutes trying to decide what to do, and I finally decided to head home.  Having been an ER nurse for many years, I knew that if we went into the ER and he did not have any seizures, we would be sent home. At this point I was both mentally and physically exhausted from all the stress and poor night’s sleep.  My sister came over shortly after we got home.  At 930 pm, the seizures started up again so Amy and I loaded Ryan in the van and off we went to the ER.  Thankfully they did not stop this time so the ER staff saw what I had been dealing with since 1 am.  Ryan got 3 mg of Ativan and a dose of IV Keppra.  Travis and I made the decision to have him admitted to Children’s knowing if we went home this would not stop.  Ryan and I took the ambulance trip to Omaha and got to his room at 1 am completely exhausted and stressed out.  I spoke to one of the residents shortly after we arrived thinking she would write orders, and something would be done about his seizures.  Over the course of the next eight hours, Ryan was put on a heart monitor but no other interventions were done.  He continued to have numerous seizures with an especially difficult time from 230 to 3 am.  At this point he was starting to almost choke on his saliva when he was having seizures which scared me as I have never seen him struggle like that. At some point around 6 am or so, a second resident came in the room.  I told her of my frustration that no one was doing anything about Ryan’s seizures even though I had told the night nurse repeatedly what was happening – and the night nurse and tech both saw his seizures numerous times.  She was not exactly kind and informed me they could not do anything until the neurologist showed up which I knew was not true at all. At this point my patience was completely gone. At 9 am, I told the nurse I was beyond irritated, stressed out and angry that nothing had been done in the past eight hours even as Ryan continued to have numerous seizures. She finally got an order for Ativan which helped Ryan fall asleep for a short time.  I apologized for my attitude but explained that at this point, I had gotten one hour of sleep in the past 24 hours and was exhausted and stressed out. I even told someone I was a big, hot mess fully understanding my attitude was probably not the best but repeatedly explaining why.  Soon after, the nicest pediatrician came in the room and saved the day.  I explained to her that Ryan had now missed two doses of medications and had not had his tube feeding since 5 pm the night before.  She was compassionate and a bit frustrated but got things moving.  From that point on, Ryan’s stay was unremarkable and things started to improve thanks to the pediatrician who made some waves and got things done.  Ryan got a big dose of Dilantin which helped a lot.  I knew he also needed to sleep and that the lack of sleep was contributing to the continued seizures.  He finally caught a break and was able to get some much needed rest.  We also saw a neurologist whom Travis and I both loved.  She ordered a new medication to use when he has cluster seizures. The seizures began to slow down, and Ryan was able to come home today.  He has been home for almost four hours now and has been sound asleep on the couch the entire time.  I have a feeling he will sleep for the next couple of days, and hopefully his brain will settle down and reset back to his baseline.

Needless to say, it was a very stressful few days.  We have dealt with grand mal seizures many times, but have not had this number of smaller seizures that continued to cluster together and kept getting worse.  Even though I got a good night’s sleep in my own bed last night as Travis spent the night with Ryan, I am still completely exhausted. I think this is the most stressed I have been about Ryan since his brain surgeries several years ago.  I just want to give a huge thank you to everyone who showed their concern and prayed for Ryan.  Thank you to my sweet friends who brought meals too.  What a blessing you both are to our family!

People often do not know what to do when someone is hospitalized or going through an especially difficult time. We have done this hospital thing more times than I can count so I am going to share just a few things to consider that really apply to anyone going through a hard time:

1. Do not ask “What do you need? Can I do anything to help?” Just do it.  If you ask if a meal would help, I will tell you no.  I do not want to be a burden.  I do not want to feel like a victim or that I cannot handle this on my own.  Because I handle it on my own every day. Just put your thoughts into action.  If you feel led to take a meal to someone or drop off a gift card, just do it.  I promise it will be very appreciated.  I had one friend bring two meals over with a very sweet card that essentially said “we are so sorry and are thinking of you”.  Simple and to the point.  Those two meals will be eaten this week as we recover from the stress and fatigue that takes days to get over. Another friend simply said “I am bringing you a meal and can do either Sunday or Monday. Which do you prefer?”  I answered her and did not have to have the ongoing conversation on what she could do to help.  Just today while eating dinner, a third friend stopped over unexpectedly with a big bag of food from Trader Joe’s and a beautiful fall plant.  I cried when I saw her because I was so stressed out and her thoughtfulness meant so much. When trying to maintain one child in the hospital and the rest at home, life is much easier when someone just says what they are doing for you instead asking what you need. And trust me, those gestures are so very appreciated!
2. Do not get mad or take it personally when I do not respond to you. If you ask me how I am doing and do not hear back, please do not text me again and say “are you there?”  Of course I am here, and I am busy trying to survive through the stress and changes.  I am trying to take care of my child and not think the worst.  I am trying to maintain my composure without falling apart at the seams.  I am dealing with doctors and everyone else who keeps coming in the hospital room. And I still have to stay strong for my other kids.  People who have children in the hospital may have the time to respond, but usually they do not have the energy.  It is very difficult to say the same thing over and over and over again.  It is exhausting.  And lets face it, family comes first.  I may call you one of my very best friends, but I may not stay in contact with you because it takes all my energy just to keep my siblings and parents in the loop – and they need to know what is going on before anyone else finds out. Just because you do not hear from me does not translate to I do not care about you.
3. Do not tell me about every situation you have had with your grandma, dad, cousin and uncle. If the situation was different, and I was not sitting in the hospital with my child trying to just survive the moment, I would care and be interested.  But right now, in the midst of the acute situation I find myself in, I really do not want to hear about what worked for your relative.  I do not want you to comb through all the choices we have made for our child and dissect what else we can do or the latest and greatest new technique or medicine you found on the web.  Please just listen and be present in my pain and concern for my child.  Please just show support and understand we are doing the very best we know how to do.  We have to make decisions, and we worry all the time that we are making the wrong one.  Hearing about how your uncle saw a doctor in the next state over is not pertinent to what I am facing right now.  I do not intend to sound selfish and self centered. And I definitely do not intend to come across as an insensitive friend when you chatter on and on, but honestly, I do not want to hear it right now.  Please just respect the choices we have made for our family.
4. Know that even when I do not say it, I really care about you. I appreciate the prayers.  I need your support.  Sometimes I feel like a complete burden and worry about what others think.  I am weak and I am imperfect, but I am doing the best I know how to do. Sometimes the emotions and stress are just too much to bear. Your love and support is invaluable.  I am just not always good at verbalizing it.

I hope these tips are received well, and I say them with good intentions. These are things I have personally experienced and also some I experienced during my days as a floor nurse in the hospital.  It is amazing what patients and families tell the nurse.  Whether a person or family is facing a difficult time with someone in the hospital or they have lost a dear family member or they are facing the loss of a job or whatever it may be, being present is the most important job you can do.  Your actions speak volumes.  Your listening ear is appreciated.  It is easy to feel helpless, but when heartache and stress come, love can be expressed in many ways to show support. Again, do not ask. Just act.

Thank you from my family to yours for the prayers.  I cannot express how much it means to know so many have been thinking of Ryan and praying for his health. You are all so very loved!

 

Late as it may be, I owe an update on Ryan.  As you all know, he was hospitalized two weeks ago to start the Ketogenic Diet which is like the Atkins diet on steriods for lack of a better description.  I am certain most people do not want to hear the details of ketosis.  Two Mondays ago we made our way to UNMC and proceeded to sit in admissions for 2 1/2 hours waiting for Ryan’s room to be ready. We asked two or three times what was taking so long and were told the room was not ready.  It was definitely a lesson in patience only to find out once we got to his room that the staff had been waiting all morning for us to show up since they had three empty rooms on the unit.  We spent three nights and four days on the pediatric unit tracking Ryan’s blood sugar with pokes every four hours.  We checked his urine for ketones four times a day.  We held Ryan down for daily lab draws as the phlebotomists poked and jabbed and missed his veins.  He still has numerous bruises and scratches to show the difficulty he endured to obtain blood.  The doctor told us weeks before that Ryan would be taken off the seizure medication which caused his broken leg in March. Once he came to round on admission day, he changed his tune and said Ryan would not be taken off the drug.  I was less than pleased to put it nicely.  Then on Wednesday, the doctor changed his mind again and Ryan was taken off the drug cold turkey.  We did not see an increase in seizures initially, but Ryan is struggling with a big increase in the amount of seizures he is enduring every day.  We keep hoping and praying this will be the day the diet kicks in and the seizures begin to subside, but so far that has not happened.  We were discharged on Thursday feeling just a bit overwhelmed at the measuring and monitoring we have to do, but once we were home, and I tearfully made it through that first night of figuring out this new normal, his diet has been an easy transition and his body has adjusted to ketosis very well.

Only 3 1/2 hours after getting home from the hospital as I went to give Ryan his nightly medications, the J tube port broke.  I jimmy rigged it with Sidney’s hair ties to keep it from leaking everywhere.  This is the part of the feeding tube we give his daily feedings through which goes into his small intestine.  Because of the high fat content of the new formula, Ryan’s stomach (the G tube port) does not tolerate continued or high volume feeds as we discovered in the hospital.  I stayed home from work on Friday knowing we were headed back to Omaha for surgery to replace his feeding tube.  After several calls with the GI doctor, we headed for surgery at Children’s.  By the time we got home Friday evening, Ryan had a brand new feeding tube, and Travis and I were emotionally and mentally exhausted.

We are both grateful for the easy transition to the diet, and we have found a routine for checking his urine for ketones and how to measure his formula, water and protein powder.  Now if we can just get these seizures to calm down, I think we will both feel like these changes have been worth it.  This diet is extremely expensive so I hope it works.  All I know, as I have said numerous times in the past, is Travis and I have done everything we can to give Ryan the best chance at a seizure free, pain free life.  He is happy, he is loved, he is spoiled, and he is here with us for a reason.  And that, I can live with.

The older kids are all well.  Brad is happy and settled in his third week of college, and the middles are doing good too.  Trevor and his best friend just got hired today by the pumpkin patch south of Lincoln to be zombies who get paint balls shot at them. I am certain they will have fun.  Travis and I are simply enjoying this season with the kids.

Much love to you all!

Good morning!  This is day three of Ryan’s hospitalization to put him on the Ketogenic Diet.  He has done fine, but we could tell yesterday he was not feeling very good which is expected for several days.  He is transitioning to a very high fat, high protein diet so feeling lethargic, nauseous and tired is expected.  Of course he cannot tell us, but we can tell he is not feeling great.  The staff is checking Ryan’s urine for ketones four times a day plus checking his blood sugar every four hours which keeps going up and down.  He is also having lab draws every morning which is a huge fight; Ryan is very bruised from the numerous pokes as it takes several tries each morning to get his blood.  It is not fun at all.

As far as the actual diet, yesterday Ryan was on half his old formula and half keto formula.  Travis said when he gave Ryan his meds last night he was gagging for 30-45 minutes  which is not good.  Today he started on the full keto formula so we will see how he does but I expect it might be a rough day.  With his gastroparesis and history of intestinal blockages and ileuses, we may have to take this slower than anticipated.  I hope that is not the case, but I am very cautious in expecting he will get out of the hospital Thursday which is the goal.

The older kids are doing well, and we hardly hear from Brad unless we contact him first which is a good sign that he is enjoying college and doing great.  He is upbeat and happy when we do talk which makes Travis and me feel good about his transition.  I did not expect anything less than a great start to this new season.

Please pray with us that Ryan’s GI system acclimates to this new formula quickly so we can go home, but more importantly, so he is not uncomfortable, nauseous and in pain.  I hate that he cannot tell us how he feels, but I am very thankful for an amazing pediatric staff at the hospital who have been attentive and as nice as can be.  A good nursing staff makes all the difference in the world.

Much love to you all!

Here are a few of the family pictures we had taken two weeks ago.  There will be more to come but we have not seen them yet.  The third one makes me laugh because it is the perfect picture of our crazy family; the last one of the kids is my absolute favorite.  Ryan was a stinker the whole time and refused to look at the camera. We did everything from clapping to stomping our feet to calling his name to making funny noises and dancing around.  It was like he knew we were trying to get him to look at Taylor and instead he decided to be obstinate and do the exact opposite of what we asked.  At least he was patient and sat through a 1 1/2 hour photo session.

Well, we did it.  We officially sent our oldest off to college.  As expected, it was a day of excitement and tears although the tears stayed at bay until it was time to say goodbye.  Thankfully Brad and Travis are both so much alike, very laid back and love to goof off, so organizing his room went well because I pretty much dictated what went where and they just rolled with the punches.  I think they both knew not to mess with an emotionally unstable mom who was not ready to leave her boy behind. It sounds silly and trivial, but I just needed to know he was settled and organized and had everything he would need. It really was a fun day watching all the kids move into the dorms.  Travis and I are both very excited for Brad’s new adventure and all the new friendships he will make.  We both had great experiences in college and know he will as well.  The hardest part was saying goodbye because Brad started crying which I should have known would happen.  I love how close we are to each of our kids, and it is nice to know we will be missed! I cannot wait to hear about his first few days as I am sure he is exploring the campus and making new friends.  These are exciting years that propel our children into a new season of independence.

This morning I opened my Bible and prayed Psalm 91 over him which I do often for all four kids.  One of my very favorite verses is Psalm 91:4 – He will cover you with his feathers and under his wing will you take refuge.  His faithfulness will be your shield and rampart.  

The other three kids are doing great.  One of Trevor’s best friends turned 16 today, and the two of them went to Sonic after school.  It was fun to see Trevor’s excitement over being able to – finally – be out and about independently with his friends.  It is a new stage, and I know this will be an exciting year for him as he gains a new level of independence.  Sidney is crazy busy with school as she is taking a full load plus three e-learning classes this semester.  She is one determined young lady cramming all these classes in so she can graduate in the spring.  I am amazed at her internal drive to meet her goal.

Ryan is doing OK and heads back into the hospital on Monday to start the Ketogenic diet and wean off one of his seizure medications. I will keep you all updated and would appreciate your prayers while he is inpatient.  We think he will be hospitalized for 3-5 days depending on how quickly his body stabilizes from all the changes.

This is quite the season of change, but it is exciting to watch our children grow up.  The Lord has really blessed us, and we are relishing the young men and woman they are becoming.  I cannot wait to see what this new school year brings!

Well here we go. It’s that dreaded season.  You know the one where kids complain, teachers complain, everyone complains.  No one wants to go back to school!  It’s dragging kids out of bed early so they will be able to function on the first day of school with half opened eyes and words of understanding coming out of their mouths instead of the typical morning grunt.  It’s new backpacks, lunchboxes, tennis shoes, and haircuts.  I’m thankful for teenagers who no longer care about having new things at the beginning of the school year and are all growing their hair out and refuse even a snippet of a hair cut.  Oh how perspectives change from the elementary years to the high school years!  Now I’m just glad they can actually find their backpack from last year and remember to restock it with pencils after shoving all the old crunched up papers into the trash.  I’m thankful when they grab a pop tart out of the pantry seconds before walking out the door instead of starving themselves until noon when they eat about 1/3 of the partially edible food on their tray.  On Monday night at 10:38, Travis and I will remember we need to stock the pantry and fridge with food so they can stuff their mouths when they walk in every afternoon after another “it was boring” day at school.  Having teenagers is easy because they refuse to eat nutritious parent-made breakfasts, and we can say “well if you choose to starve, that’s your problem not mine” and really mean it.  Gone are the days of feeling guilty for not having the perfect plate of two scrambled eggs, a piece of buttered toast and a cute little bowl of berries along with a glass of cold milk.  Oh and the vitamin sitting next to the plate – can’t forget the vitamin.  Now I just look at the pop tart box to remind myself there are actually vitamins crammed under the frosting.  And besides, what’s the difference between a pop tart, a muffin and a piece of bread anyway?  They all have the same ingredients, right?!

Ryan will be an 8th grader on  Monday. I can tell you now, Travis is going to have a fight on his hands trying to get the boy out of bed for school. He loves his sleep, and he really loves being able to sleep well past noon every day then get out of bed when it is his idea, not dad’s.  He has no idea what’s coming!  And Tuesday is the big day when Trevor and Sidney head back to Southeast as a sophomore and junior.  I asked Trevor if he was glad he didn’t have to be a freshman all over again and he gave me the typical response – “sure”.  Such depth of insight from the 15 year old.  Go figure.  Unless he is talking to his friends or engaged in a subject that really grabs his interest (video games and friends), these one liners are the response we get.  Oh but we do sometimes get an “I guess” or “I don’t know” out of him which is super exciting.  He is the child who says little but when he does want to talk and opens up, ya better drop everything and listen or you will miss the path into his heart.  He can be very engaging when he chooses to be and has quite the funny, sarcastic sense of humor when you get the chance to be a part of his conversations.

Sidney is going to be crazy busy this year.  She is heading into her junior year which is widely known as the hardest year of high school.  But not only is she in her hardest year, she is entering her last year.  After deciding to graduate a year early, she has plowed ahead full speed toward shoving all her necessary classes into her schedule. She’s nuts, let me just say it. But I absolutely support her and admire her drive.  Last spring she finished three e-learning classes in one semester along with her otherwise full schedule.  She plans to do the same this fall with a crazy hard class load, but the girl is a workhorse when she sets her mind to something, and I have no doubt she will finish well.  She drives me insane sometimes with her fierce determination and pure stubborn attitude, but she really does come by it honestly. I have absolutely no idea where that passion and determination comes from. Ha! I really do admire her vision and drive and often wish my mom was still here so I could talk to her about how she managed to survive my teen years.  At least Sidney is putting that stubborn, determined, self driven attitude toward something good as I cannot say the same for my own high school years.  Travis and I are very proud of her for her self direction as she has planned and prepared for this shortened high school career independently, using nothing but her own free will and determination.  The girl will move mountains some day if she chooses.  I think she already is.

While the high school thing is now a well known, comfortable, worn path of understanding and sheer routine, the college years are as new and unknown as bringing a baby home from the hospital.  It is the “now what?” attitude of the early days when you just simply have no idea what to do or how to respond.  We have eleven days until the van gets packed, and we head down to Missouri to get Brad settled in at Missouri Western.  The dichotomy of emotions is as wide and deep as the Grand Canyon.  I am excited for him, but then I am crying as I stare at an old picture showing me a chubby cheeked little five year old riding his bike down the sidewalk on a hot summer day.  I am laughing and excited one minute then emotional and defensive the next as I fight the desire for control over making sure every single detail is just perfectly aligned and set. It makes me laugh thinking about the differences in how Travis dealt with sending our firstborn off to live in the dorm compared to how I handled the situation when the planning started. He simply said “we can figure out what he needs for his dorm room when we get there and see the space”. I being the mom, on the other hand, flipped out at hearing those ungodly words spill from my husband’s mouth.  What do you mean wait until the very last second when we are about to say our goodbyes through ugly sobs and blurred vision from all the water running down our faces?! Oh no. I planned, wrote a list of all things necessary that I was just absolutely certain Brad would DIE without.  I searched the internet for hours looking for the perfect guy comforter and schemed and studied every single item he will need.  I signed up for Bed Bath and Beyond text messages so I could get a coupon to buy his perfect comforter that matched the navy blue, cream and grey themed colors I planned out. Brad could not care less about colors, towels, organizing or making any college related decision. I did check before I went on my crazed shopping spree. I went to Ikea for the very first time with one of my dearest friends and bought all kinds of necessities for his dorm room like the desk drawer organizer I am now 100% certain he will not use.  Oh, it will sit in his desk drawer because I will put it there in my emotional state of needing to control the organization of his dorm room, but I know it will not be used to keep the 18 year old laid back college student organized.  Because he doesn’t care about being organized.  He’s laid back. I already said that.  He lives in the moment. Goes with the flow.  He’s all about laughter, socialization and having fun.  I’m not sure he will survive.  Will he study?  Will he give himself enough time to write the paper due the next day instead of spending the entire afternoon playing frolf (that’s frisbee golf for those of you saying “whaaat?”) with his new found friends then going to Chic Fil A because cafeteria food sounds awful?  Oh my word I’m not sure I bought enough organizational supplies to keep him on track!

I am pretty sure the ability to laugh at one’s self is a necessary gift when you become a first time college mom.  And I have it down.  No worries.  I realize I am a mentally unstable 40-something woman who is a bit crazy and a tad irrational about what this college life thing will really be like. And I went to college, lived in the dorms, survived and thrived. Imagine that.  My heart hasn’t caught up yet, and I am not sure when it ever will, but my brain says Bradley James will be just fine down there in St. Joe two plus hours from his mommy and daddy and all things comfortable, secure and known.  I will have my phone in hand at all hours of the day and night, ringer up as high as everyone around me can tolerate as I wait for the first text, the phone call that will come much later than I will like. My family will want to slaughter me after I say for the 500th time, “I wonder what Brad is doing right now?” And when he does finally come home that first time, I will have homemade chocolate chip cookies which he absolutely loves ready and waiting as I nearly shove them down his throat after getting that first hug and telling him how happy I am to see him.  Because that, of course, will make everything right again with the world. And some day, after the initial freak out ugly cry after we move him into his new college dorm, some day this will all become our new normal.  Some day I will be used to not seeing him around our home for weeks on end.  Some day I will be able to find joy in his growth and  maturity and amazing experiences in the stories of all things college.  I know that peace will come.  I know the new normal will one day become routine and familiar.  But I’m not there yet.  So if in the next ten days you see me at Target standing in the cleaning supply isle starting at the Clorox wipes trying to decide if lemon scent or unscented is best for college kids all while trying to secretly wipe the tears from my eyes, do me a favor and just give me a little hug and tell me it will all be OK.  I’m gonna need a little grace.

 

 

Tomorrow we will have a house full of six again for the first time in twenty days!  It’s been a long three weeks as Trevor set out on his travels to Mexico first.  Six days later, Brad and Sidney left for Brazil.  Four days after they left, Trevor came home.  He has officially decided he is glad he is not an only child.  Having three kids in three years makes for a quiet house when two of the three are gone.  We have heard stories of Trevor’s trip, but it will be special to sit with the three of them tomorrow evening and talk about all their travels together.  While we hear bits and pieces from Brad and Sidney, Trevor has not been able to share his journey with his siblings nor have they shared with Trevor.

Trevor in Mexico along the Pacific Coast.

Sidney posted the picture below on Instagram and I simply love her tag line. You can barely see the cross on the hill (Christ the Redeemer statue) behind them in Rio de Janeiro.

Yes, it’s no joke – Sidney broke her hand in Brazil on day six of their fifteen day trip.  She and I will be taking a trip to the orthopedist on Thursday.  The total bill for emergency room services in Brazil including xrays, medication and casting = $35!

Trevor and Ryan watching TV this week.  Ryan was a happy little boy to have his big brother home!

One thing I have discovered while they are gone is just how close we are to  being empty nesters.  In three years all three kids  will be gone.  And while I am excited for them, I am not looking forward to the quiet.  I know Ryan misses his siblings as well; he seemed especially bored when all three were out of the country.  Just saying their names grabs his attention.  Sidney loves to tickle Ryan, but when I did it, he gave me a look like “really mom, this is not  our thing”.  It was amusing.

I am going to ask each of them to make a post on this blog to share their experiences and what they learned about different cultures.  I am sure they will have a lot to share, and I look forward to their writings.

Travis is doing well and is really looking forward to having all the kids coming and going during the day.  He absolutely loves the summer days when all his kids are home with him. It has been a rough period for Ryan as his seizures have increased in intensity again.  Saturday was especially hard.  He was in the bathtub and had a huge myoclonic jerk which threw him backwards so he was lying very stiffly in the tub. The water was not filling the tub but just running straight down the drain; he likes to run his hands through the running water.  I noticed almost immediately the intensity of this seizure, and it quickly turned into a grand mal.  This is the first grand mal he has had in probably five years.  I screamed at the top of my lungs for Trevor who was in the basement with a friend because I could not get his stiff body out of the bathtub and I was very worried that if he stopped breathing I would not be able to resuscitate him in the tub.  Trevor scooped him up and laid Ryan on my bed.  I started counting and begging both Ryan and God to get him out of it.  At seven minutes of seizing I called Travis to let him know I was calling 911.  As I dialed and nearly hit send, Ryan pulled out of it.  That is the longest eight minutes I have had in quite a long time.  Eight long minutes of disbelief that the grand mals are back.  The last time he had a bunch of these, we counted 22 grand mal seizures in one month.

Needless to say, we stocked up on liquid Ativan and Diastat so we are ready should another one hit.  Ryan’s seizures are so malignant and intractable that we do not even treat them when they cluster for ten minutes or more (which happens daily). But we are now stocked up for longer lasting clusters and grand mals which is frustrating and scary.  It is so disheartening to see this new level of fear rise up in all of us, but we know this is our reality. Travis and I have long been crazy about checking on him before we go to bed, if we heard something abnormal in the baby monitor in the middle of the night, and first thing every morning when we wake.  I am always afraid I will find he has passed in the middle of the night.  It’s a fear both Travis and I – as well as many other parents whose children suffer from the same intensity and severity of seizures – deal with every single day.  After four brain surgeries, a right frontal lobectomy, a VNS implanted and at least 20 seizure meds, there is nothing left to do but place Ryan in God’s hands and pray he does not suffer.  I just hate to see my older kids have to go through this, but it is their reality as much as it is Travis’s and mine.  God is in control, and I trust His will whatever that looks like.

For today we are celebrating the blessing of missions trips and getting our family back under one roof.  We will dance to the beat of happiness and laughter, and simply enjoy the gift of being together.

Many blessings to each one of you.  You are loved and cherished!

 

This has been a week of anguish and pain.  How does one process the passing of a life?  Where does common sense land when irrational behaviors bring chaos and death?  Who constructs  justification when devastation invades the corners of a heart?

Earlier this week my husband sent me a text that said “Charlie sent an email. You need to read it.”  Wondering what my uncle would have to say that is so important in the middle of my work day, I trusted my husband’s instruction and went right to my emails.  A searing pain shot straight through my heart as I read the words that one of my cousins had suffered a severe brain injury and was not going to survive.  How does one process such shock?  Though years and miles have separated us, this man is blood.  He is family.  He is childhood memories and sweet laughter and shenanigans and hot summers and cross country trips in the back of the station wagon.  How can he be gone?  How will my sweet aunt and uncle and cousins survive this loss?  The death of a child plagues me at every turn.  Having one who is delicate and weak and declining with the passing of the clock has bred a fear of loss in the darkest corners of my heart.  To think of my sweet family enduring this same fear and loss produced a flood of tears and empathy. I simply cannot imagine the searing pain those I love are facing at this very moment.

From this heartache, just a few days have passed since my phone beeped and hollered and screamed of the largest mass shooting in US history. Then a horrendous tragedy of a babe, just a two year old tragically stolen from his father’s arms in the Disney World lagoon.  More pain.  More questions of why?  More disbelief.  Oh the pain of death!  It comes and steals the breath of every person at some point.  They say death is a part of life.  And death is not the end for those who believe.  They say death is freedom of this world’s pain.  But what can they say to calm the hurting heart?  What can they say to numb the shooting pain of stolen life?

I once saw a saying that has stuck with me.  It says this – Life on earth is the closest thing to hell a Christian will ever experience.  Oh how true!  Anyone who has put their hope in Jesus Christ, who has eternity in Heaven to look toward, who believes the pain and destruction and death of this world is all a result of sin – everyone who believes truly is in a living hell on earth, the only hell we will ever experience.  While the realization does not erase or minimize the pain of loss, it does offer a perspective deserving of thought and attention. It produces the gift of hope.

For the Christian, this life is about relationship.  Relationship with Christ – trusting in His provision, in His plan, in His will for our lives no matter how may days we are given. This life is about others – sharing Jesus, the hope of eternity, the power of grace, the redemption of sin, sharing Jesus with others.  This life is temporary for those who believe in the One who saves.  This life is about finding joy in the mundane, in the stress, in the loss, in the happy, in the unexpected. This life is being the light of Jesus in a world of darkness.

And how does one do that?  How does one find the strength to accept the task?  Only through the cornerstone.  In Bible times it was the rock, the foundation on which a building was constructed.  Once the cornerstone was put in place, the rest of the structure or building was formed around it. If the cornerstone was removed, the structure would collapse. Isaiah 28:16 says, “Therefore, this is what the Sovereign Lord says: Look! I am placing a foundation stone in Jerusalem, a firm and tested stone. It is a precious cornerstone that is safe to build on. Whoever believes need never be shaken.” At the time this was a prophesy of Christ who had not yet been born. It was a promise.

I love the song Cornerstone by Hillsong – listen to it here:

No matter the pain, the unanswered questions, the confusion of a lost and broken world, Christ is still the cornerstone for those who believe. He is comfort to the hurting heart. He is faith to the unbelieving spirit. He is eternity stored in the hearts of all believers. He is the foundation of a life built on trust in His saving grace.

Hope exists.  It dwells in the hearts of those who believe, who call on the name of the One who can save.  The One who brings peace in the midst of a chaotic, lost, confusing world full of pain. In the midst of this hell on earth, there is much to rejoice in when you choose an eternal perspective.  The Lord is the only source of peace and joy in the midst of the broken. He is the cornerstone, the solid foundation.  When the storms come, when they ravage security and steal breath and peace, when they uproot dreams and destroy connection – the cornerstone stands. Still He stands firm with His grasp tightly bound over us.  We often do not see or feel the safety of His grip, we doubt the strength of the foundation, yet He stands firm.

Isaiah 55:8 ~ My thoughts are nothing like your thoughts, says the LORD. And my ways are far beyond anything you could imagine.

Christ alone, cornerstone, weak made strong in the Savior’s love, through the storm, He is Lord, Lord of all! There is HOPE for all who choose to believe and put their trust in the Cornerstone – Jesus, the one who saves.

Everyone who calls on the name of the Lord will be saved. ~ Romans 10:13

I stood between the sink and dishwasher clanking the glasses and bowls and forks and pans around, separating the ones to be hand washed from the ones I could rinse and place in the dishwasher. All the while glancing across the room as a couple of kids and the husband sat on the couch talking about the upcoming missions trips the three oldest are taking in just a few short days. One to Mexico for nine days and two to Brazil for fourteen. Then they got up one at a time and left the house, and the tears glistened. I silently stood looking out the window thinking “this is all going too fast…way too fast…they are leaving me”. And as I turned, I had to make the conscious choice to make faith bigger than fear, to choose prayer over worry, to make joy larger than sorrow. Last year it was three in high school, this year it is two in high school and one in college. Even the one who chooses to graduate a year early is already talking of apartments and moving out. Life charges ahead without thought of the parents who wish it to slow. Every breath leads to another moment of letting go. Each step lunges ahead into a future unknown.

Looking at the moments ahead, the days are coming for packing clothes, shopping for dorm room towels and sheets and under the bed tubs, planning which roommate will bring the coffee pot and who will bring the TV. Those moments when I reflect back and wonder how this all came to be. These are the days I wish to tightly hold in my hands and reel in for just a few more moments of together. How I long for tighter hugs, longer talks in the kitchen making cookies together, more requests for pancakes and bacon, permission to go to a friend’s and questions of how to manage a situation. Yet I know, I really believe in my heart, this is not the end of the relationship, the strong bond of mother and child. No, this is the beginning of a new normal, and this new normal is not going to be bad. It is just going to be different. In the looking ahead, in the wonder of what the college experience will entail, I see joy, I see discovery and insight and learning and calls home to say he misses me. I see a Heavenly Father who loves the boy more than I do even when I cannot comprehend that truth. But the sorrow overwhelms this momma’s heart, the unknowns stir the emotions of wanting to protect, the knowledge of change makes me want to force the clock to halt. Excitement and sadness can truly coincide in one heart. They take a parallel path on the travelled road. The grief may overwhelm, but the knowledge that the boy who is moving away loves the Lord is great. Because the only comfort when the momma’s arms are miles away will be the safety and security of a Heavenly Father who knows and sees, who loves and calms. And that is absolutely enough.

Time may be a stealer of moments, but it cannot erase the memories. Time may refuse to stand still, but with the movement of life as it marches on to the next thing comes realization. An understanding that I have done everything I could to raise children who open doors for others, who put the napkin in the lap, who say please and thank you, who look others in the eye as they speak, who understand the value of grace and the ability to pour it into another life, who love Jesus first, who can be fun and joke and wear the grin of sarcasm but know to respect and listen. This momma is far from perfect and did the best with the skills in my pockets. I was strict and relentless with chores and schedules, probably a little too much. Time may keep moving, but I have no doubt when the door closes, when the last goodbye and kiss are given, when the car putters down the road, there will be no regrets. Wishes of having eased up or stricter with certain things, maybe. Wishes of more games and picnics and books read, sure. But did I do my very best? Did I give my all? When the college day comes, will I be satisfied with all I did to make him ready? I sure hope so. I sure hope he knows the love he leaves behind, that same love he also takes with him. I sure hope he sees the momma who is excited and scared to death all in one breath. The momma who will fake the happy to cover the tears. Will he know my tears will fall to my lap the whole way home? That I will be unable to steer the car as dad knowingly must drive the long road home? The day is coming, but it is not here yet. The moments are moving, but they are still creating one last summer before the sending awakens to make new memories and bestow life adventures not yet discovered.

The summer is here, the graduation is gone, the new adventures of missions trips and new friendships await. And all the while, the momma stays right where she needs to be – in the home, on the knees, praying for strength and protection and mercy for the littles who have grown into young adults ready to take on new challenges, deepen their faith and make their marks in a tattered, broken world in need of a Savior.

So many changes, new adventures, discovered emotions. Thankfulness settles for the littles who are yet to leave the nest, who are still growing and changing and living the known routine and predictable days. Their days will come as well. Their moments of choosing change and future adventures will come as the clock ticks to the next hour, the next day. Time marches on for us all. With it, a need for gratitude exists, begging to be noticed and thought of and cherished. Gratitude for the days gone by, for the treasured moments, for the loving of growing ones ready to test their independence. Gratitude for lives well lived and the assurance of the Lord’s protection in the unknown days to come.

This morning at church I saw a tiny little baby not even two weeks old whom my daughter was holding.  And as I stood there looking at his little bitty fingers and perfectly content, sleeping face, I thought back to the days when my four were so small.  Those memories are embedded in my heart yet I have forgotten so many details.  What I do remember, what my mind will never forget, is the excitement of having four children five and under.  Our family was complete.  We had the perfect number of children, just as we had planned.  And they were healthy with all their fingers and toes, eyesight and hearing.  The sweet baby in my daughter’s arms made me think back to the old me who had no idea what was coming when Ryan was just a tiny little two week old baby.  Of the heartache surprising me so soon after his birth.  The first recognition of seizures when he was just four months old sitting in the exersaucer that held all four children.  I still remember exactly where he was when I realized something was terribly wrong.  It was dinner time with the older three kids and Travis gathered around the table.  I looked at Ryan then timidly told Travis to look at him because I thought he was having a seizure.  Sweet Travis tried to down play my fear, yet reality took hold. Seizures were indeed taking residence in Ryan’s four month old brain.   And now over the span of the past twelve years as I look at the dashes that have marked major events in his life, I sit and wonder how we have survived.  How does any parent of a special need child survive?  Those little babies so perfect and compact and sweet produce such joy and heartache all in one breath. To say I never saw it coming is an understatement.  To say my heart has broken in a million pieces over the years is nothing short of the truth.  To say I have experienced a fight like no other is my reality.

Yet here I sit wavering between hope and despair.  Here I tend to my broken heart realizing my sweet little boy is slipping away just a little bit more.  My grasp on him a little bit looser than just a few months ago.  As I fight for what once was, I know it will never again be.  What I hope for in my mind is but a mirage of health he will never regain.  What I find in my dreams is a yearning for giggles, I love yous and begging for a second helping of ice cream.  And I know those dreams, those yearnings, those hopes will never come to fruition.  Every day is a battle between chronic grief and accepting reality.  And when I get comfortable, when I enjoy stability and feel excited at weeks on end of normalcy, it all gets yanked out from under me.  My mind forgets about the decline, disengages from past losses.  It is protection and survival.  For years it was intermittent seizures and loads of behavioral issues like head banging and helmets and not being able to exist in public.  Then it was increasing developmental delays and more frequent seizures.  Then it was two years of brain surgeries and tests and med changes.  Then came tummy issues and more surgeries and palliative care.  The words were silenced, the running through the house was no more, the smiles began to fade away, the sleeping increased.  The rampant seizures continued and the body began to weaken.  My sweet boy, my precious son, my last born . Oh how the grief of loss has overcome a weary soul.  As love remains the driving force of fighting for more time, the reality of slipping away is constant.

The cycle of emotions runs congruent to the ticking of the clock.  As days turn into weeks and weeks turn into months, the slipping away becomes more noticeable, more real.  Yet with every change, with every loss, there are no regrets.  How could we love him more?  How could we not keep fighting?  How could we not muster the strength to do the next thing?  It is in the daily care, in the heaving lifting of a body that cannot stand on its own, in the ritual of morning and nightly medications and feedings.  Serving Ryan is a privilege.  It is a treasured gift sometimes wrought with weariness and fatigue, but a treasure no doubt.

There are moments I beg God to take Ryan home, to free him from the earthly bounds of seizures and medications and tube feedings and constant sleeping and being caught in a body that betrays him daily.  Days I say enough is enough.  Even when I do not want him to go, I want him to be free. Just how much can one little boy endure? But then I stop. I stop to remember He does not make mistakes.  Though Ryan’s body is severed and broken and fading, the Lord is doing a mighty work through him.  I know this to be true in the deepest corners of my soul.  I am confident of this and only this – God is capable of taking a broken little boy and turning him into a vessel of His mighty work.  Much like the wind rustling through the trees, God’s power in Ryan’s life is not seen by the human eye, but it is felt in the hearts of those who choose to see the beauty of one life touching another.  It is in the believing, in the trusting, in the faithfulness of two parents just doing what has to be done that the Lord is honored.  I cannot speculate on what the future holds.  I cannot question why the hand of God has given us a broken body to love.  I can only believe Travis and I are the humbled ones continuing to do what God has called us to while trusting His hand is leading where we should go.  Whatever tomorrow holds, wherever the road leads, however bad Ryan’s health gets, one thing I know to be true.  God will carry us through, give us strength to fight the battle and continue His perfect plan for our lives – for Ryan’s life.

As the body weakens and the walking has ceased, as we must carry him from car to the house, from bed to the bath, from couch to the next thing, fear is present.  As we navigate the changes needed to our home, as we consider next steps, grief has entered our home.  It is in the hot tears, in the sorrow of continued loss, in the sadness of a life slipping away that we search for strength to continue on.   My heart is heavy, my tears are abundant, my sorrow overwhelming, yet my faith is strong.  I do not know how to do this. I am weary of the loss. I want to go back to stronger days. The door to yesterday has closed, and the door to tomorrow has not yet opened.  So today, this beautiful place where time stands still in the moments of the present, I fight for strength.  I fight for peace.  I fight to believe in God’s goodness and in His faithfulness to provide.

We all have a cross to bear.  We all carry on in weariness, fighting for strength.  We all do the next thing as we battle faith over fear.  In the moments of uncertainty, in the loneliness of the battle, we all have the same choice.  The choice is simple – trust God or trust the unknown.  While faith in Christ does not remove sorrow, while it does not erase pain, while it does not diminish trials, faith does produce hope.  Hope for an eternity full of riches and glory and healing.  Hope for joy to show up just as the sun rises each morning.  Hope for God to meet our every need and be our strength.

Spring is here which brings quite the mix of emotions.  I love this time of year when God’s creation comes back to life as perennials peek out of the ground, and the trees start to bud again.  I love to open windows and bring some fresh air back into the house after it has been closed for many cold months.  Yet this spring, not only is another school year wrapping up, the boy who made me a mom is graduating.  I still remember following behind Travis and Brad as we walked him to school on his first day of kindergarten.  Travis’s big strong hand wrapped around Brad’s little fingers as a brand new backpack rested on his back.  I was pregnant with Ryan and pushed the middle two in our double stroller wondering how we got to this day already – and he was only five.

Golf season is in full swing – literally – and the first tournament is in two days.  Both boys are playing this year which is fun, but it makes for a crazy schedule with lots of tournaments.  I love that they get to share this year together.

The decorations are partly constructed, the food list is written, the invitations are ready to be addressed, but this momma’s heart is no where near ready to face what is coming.  I just cannot wrap my head around the reality of graduation.  This boy, this sweet, fun loving, laid back, generous, God fearing young man is ready to close this chapter of his life.  And I am not ready.  Oh I am excited for him as he moves from high schooler to college student, but the thought of not finding him in the kitchen every morning before I step out the door for work just crushes my heart.  I loved walking in the door Saturday just after 1 p.m. to see him standing in the family room watching a golf tournament on TV in his pajama pants with his hair sticking up all over as he practiced his golf swing.  That is so Brad.  And I love it.  I will miss these moments that have become routine in our home.  He is a talker, and I have come to absolutely cherish the conversation and connectivity we share.  He chose Missouri Western in St. Joe to spend the next four years.  It is a great, small school where I know he will thrive.  I remember my college years so fondly and know he will have an amazing experience just like I did, but the thought of him not being in our home every day brings me to tears.  So for today I am going to choose to enjoy the golf clubs taking residence in my family room, the constant friends eating up all the food, and the endless hours of Family Feud on TV that makes him laugh.

Sidney is doing well and has made some very grown up choices this year.  She has never cared for gossip, girl drama and cliques.  Having had her share of struggles in the friend department, Sidney prefers a small handful of close friends over a large group of many.  Her closest circle are all older than her with her best friend graduating this year.  She has always been a bit more grown up than many of her peers and part of that is more than likely because of her life experiences.  Last fall she came to Travis and me with a proposition.  She had already spoken with her counselor at school and let us know she wants to graduate as a junior.  It took us by surprise but in true Sidney fashion, she already had the plan laid out.  After much prayer and thought, her plan is in place, and she will graduate from high school next year.  My only worry was she would some day look back with regret over the decision, but now that it has been several months in the making, I know she is making the right choice for her.  There are plenty of people who have voiced their opinions against her decision, but Travis and I support her completely and know she will thrive no matter what her future holds because of her determination and strong will.  Otherwise she is busy working and being social which is exactly what a 16 year old girl should be enjoying.

Trevor chose to forgo Zoo School this semester and after Christmas break ended and the kids were back in school every day, he turned into a new kid.  We did not realize how miserable Trevor was until he was back at Southeast all day. Zoo School was just not his thing and that is OK.  He is doing well and has a great group of friends.  It amazes me how much he has grown in the past year.  Not just physically – he is six feet tall – but in his character and maturity as well.  It is fun to watch each of the kids develop into their own grown up personalities.  Trevor seems to be enjoying golf and is looking forward to his first tournament. His friends take up the majority of his time as it should be at his age.  Speaking of age, Trevor turns 15 this week but is going to wait until golf season is over to get his permit.  I can hardy believe we will have three drivers!  How did they all get so old?

Ryan has been fairly stable for a while.  Everyone knows he does well then declines then does well then declines.  Overall we have been more than blessed to avoid hospitalizations for the last year except for surgeries to replace his feeding and cecostomy tubes.  His seizures are still rampant which will never change, and he continues to sleep a lot.  Unfortunately Ryan stopped walking about ten days ago, and we do not know what is wrong.  He has done this in the past but only for a few days at a time.  This is the longest he has gone and refuses to put any weight on his right leg.  Travis took him to the pediatrician last week, and an x-ray was done which was negative.  He does not have any issues bending his leg; he just won’t walk on it. We cannot get him into his orthopedic doctor until April 19th which is disappointing but typical. With Ryan not weight bearing, we have been carrying him all over the house and to and from the car. Needless to say, it is a difficult task because he is at least 5’1″ and over 100 pounds. I would be lying if I said it has not been a struggle. But you do what you have to do when you have a child who cannot take care of himself.  Even on a good day when he does not appear to be in pain, we still have to lift him in and out of bed, in and out of the bath and the same for the van.  Ryan simply cannot do those things so we have been used to heavy lifting, but that is much different than physically carrying him around the house. Travis ordered a walker with a seat on it, and it just arrived today.  It is a godsend as it is easy to maneuver around the house, and it does not wear on the carpet like his wheelchair. I would be lying if I said I was not concerned.  I think back to four years ago after Ryan’s fourth and last brain surgery when his GI system shut down from his stomach to his rectum, and he was hospitalized for a month on TPN.  During that time he quit drinking and has not had any oral fluid since.  And now in the past few months, maybe close to a year, he has stopped eating all together.  For a long time he only ate when we would go out to eat, but now he really does not eat at all except for very occasional moments which are becoming few and far between.

It is disheartening to watch Ryan decline and move farther and farther from my ideal of healthy, but this not walking business has really taken hold of my heart and simply broken me where words escape.  Yet I cannot spend my time worrying over events that have not happened or ruminate over situations out of my control.  The simply truth is God holds Ryan in the palm of His hand just as He holds every single one of us.  And no matter what the future brings, no matter the circumstance, I trust the Lord will give us whatever we need to handle each moment of this journey.  Please pray with us over Ryan’s health.  We know he continues to very slowly decline, yet the joy he brings to our family is overwhelming much like the love we share.

Spring brings refreshing rain, cool breezes, bright sunshine and hope of new life. Much the same, seasons of change bring hope and sorrow, laughter and tears, growth and unknowns. Only the Lord knows what our futures hold, and I am at peace knowing I do not need to worry. Ecclesiastes 3 –

For everything there is a season,
    a time for every activity under heaven.
A time to be born and a time to die.
    A time to plant and a time to harvest.
A time to kill and a time to heal.
    A time to tear down and a time to build up.
⁴ A time to cry and a time to laugh.
    A time to grieve and a time to dance.
A time to scatter stones and a time to gather stones.
    A time to embrace and a time to turn away.
A time to search and a time to quit searching.
    A time to keep and a time to throw away.
A time to tear and a time to mend.
    A time to be quiet and a time to speak.
A time to love and a time to hate.
    A time for war and a time for peace.

What do people really get for all their hard work?  I have seen the burden God has placed on us all.  Yet God has made everything beautiful for its own time. He has planted eternity in the human heart, but even so, people cannot see the whole scope of God’s work from beginning to end. So I concluded there is nothing better than to be happy and enjoy ourselves as long as we can. And people should eat and drink and enjoy the fruits of their labor, for these are gifts from God.

 

I carried my bags across the parking lot filled with dirty cars in need of a bath. The little one to my left held her big, strong daddy’s hand as she screamed and wailed. The dad smiled that knowing grin and said “I know baby girl; it’s gonna be OK”. All over a squeaky, brown horse awakened by a gold coin. And now walking across the parking lot, she let the whole world know her disappointment in the horse that stopped too soon. I smiled as I watched the loving dad as he led her to the next thing. And my heart yearned for those days long gone of disappointed babes who cried over a special grocery store ride ended far too soon or the Skittles left on the candy shelf. And in the fog of memories I realized how many of those moments of baby years and toddler tantrums I have forgotten. I promised that young me over and over again that I would never forget. That the memories would never fade. But as one memory replaces another, I still carry a piece of every stage. I may not remember what decorations were hung for the second birthday party or what character backpack was slung over scared shoulders on the walk up to the big doors of kindergarten. I may have forgotten the first lost tooth and the struggles of potty training. I may not recall the first touchdown catch or the first volleyball to skim over the top of the net. Yet I still carry many memories so precious to my soul they barely escape in words without the warm tears wetting my cheeks. I remember much yet I remember so little. How does one recall every moment of four little lives? My mind yearns to never forget while the details slip into the fog of yesterday. There is joy in the recalling of time. There is laughter over which child remembers what. There is surprise when a story is told and the mind recalls the moment as if it happened just yesterday. While some moments are gone, loveremains which spans the hours and weeks and years. There is comfort in knowing they were loved well, comforted often and celebrated big. There is satisfaction in believing the best job was done. Long gone are the days of watching the clock and praying bedtime comes soon when fatigue and feelings of being the worst mom ever ruled my mind. And now the clock moves too slowly as I wait for them to open the door and leave shoes to stumble over. When I wait for details of the day and the sharing of hearts. And yet the clock ticks faster with every passing moment. As they grow and need me less for the daily tasks, I know they need me in changing ways.  Mostly they just need me to be present. Sometimes it is in the baking of warm cookies or the washing of clothes. Maybe it is just the comfort of seeing me sit on the couch or hearing the voices as Travis and I quietly talk in our room. The needing has changed, but the love has remained. My mind tells me my job is to grow them to let them go. But my heart fights the knowing and longs for more days of dependence and messy faces and playing action figures and dress up. The roles change and the bodies get bigger and more independent, but the relationships are the constant. Needing the dad and the mom is the one gift time cannot steal. Time may add more days to the past, but it cannot remove the ties that make us family. Time cannot take away the laughter and moments of togetherness around the table. Time can march on, but it cannot remove the bond of family. As the memories change from cute chubby cheeks to stunning beauty and from the little sticky hand reaching for a treat to the strong manly hand opening the stubborn jar, the same blood runs through the growing soul. The days of laughter and cluttered rooms and friends and stinky shoes lead us closer to a quiet home without the noise and sleepy teenagers. Yet the memories, the ones that remain, those are the treasures that will never fade. And one day I know, I just simply know I will look back and remember the beauty of growing children. The overwhelming love, the joy of parenting, the cherishing of moments. Those are the memories that will never fade away. No matter the age, no matter the distance, my children will always be just that – mine.

The presents are opened, the food has been eaten, the house is now quiet.  Ryan is playing in his room with his table toys spinning and beeping and spinning some  more.  Trevor’s happy voice floats up the stairwell as he eats candy from his stocking while playing a video game on line with best friends. Sidney and Brad are out with their significant others, and Travis is on duty because police officers do not get the holiday off.  And in the quiet where warmth is found, where comforts abound, where I look around and see the love that shaped these boards and nails into a  home, I am reminded of the blessings.  In the quiet reflection, as emotions stir and tears hang gingerly on the edge of falling, I feel insignificant.  I feel unworthy.  I feel mercy unending.  Because the warmth of loved ones at my side, the time spent sharing gifts, the moments of eating eggs and warm cinnamon rolls together at the prepared table are precious to my heart.  My mind wanders to lost loves, to far away family, to those without the resources to enjoy a day of celebrating.  I do not deserve this community the Lord has given me.  Yet it is mine, and I gladly with a heart bursting with thanksgiving, claim the blessing.

While teenagers yawned and brushed teeth and wandered aimlessly looking out the window at a foggy morning filled with snowy trees, Travis seemed distracted.  He wore the look only I can recognize.  The one that says his mind was fixed on something, somewhere else…not on the coffee brewing as he placed cups on the counter to be filled.  As I inquired, and he hesitated to respond, his simply words caused a swirling of emotions in my heart – “I’m thinking of Ryan”.  I knew.  I understood in that place where locked eyes spoke of the stinging pain.  Of the miracle boy who peacefully slept just footsteps away in the warmth and quiet of his bed.  Of the child who does not understand Christmas, who cannot open a present or appreciate a gift.  Of a child whom we were told should not be alive, yet here we are nearly three years after hearing the words, still soaking in the beauty of his brokenness.  So we let him sleep, our precious wonder who had no recognition this day is a celebration.

Yet our day, our journey through Christmas Eve and Christmas Day held a story of acceptance and loving to fill another broken soul’s yearning for tradition and family.  His name is Willy, and he is a precious friend.  Willy is part of our adult special needs Sunday school class.  When we learned he had nowhere to go this Christmas, that his family would not be present to celebrate Jesus’ birth, that loneliness would fill his days, our hearts yearned to include him in our traditions.  As I filled Ryan’s Winnie the Pooh stocking with candy and small gifts for Willy, emotions ping ponged in my heart as I yearned for a child who could engage in the giving and sharing and appreciate the surprises in a Pooh stocking.  Yet my heart overflowed with thanksgiving for the joy Willy brought to our home with his gentle hugs, contagious laughter and constant words of appreciation.  I caught myself looking at him in awe at the joy he exuberates.  We have a tradition of playing the UnGame at dinner on Christmas Eve.  One card said “if you could spend the perfect day with your best friend, what would you do?” When we got to Willy, his face lit up, his smile stretched wide, his hands clapped then he pointed up and said “Me and my best friend Jesus, we would have a great day!” Oh the conviction, the stabbing to the heart. Is Jesus my best friend?  Do I ever consider Him my first choice to spend the day with?  Do I possess the passion and love Willy has for his Savior?  I could not catch my breath as I sat by Willy’s side and took in the pure joy and excitement the thought of spending the day with Jesus gave my friend.  Oh the simplicity of Willy’s routine, mundane life.  He has little, yet he has so very much.  If only I could live a life so full of excitement for my Lord and Savior.  If only my first thoughts went to Jesus when so many moments in my day find me thinking of Him as an afterthought.  Oh the conviction I felt as I watched, over and over during Willy’s time in our home, the excitement he exuded to speak of Jesus.  As I contemplated the difference, the chasm between Willy’s and my attitudes and words, I realized.  Willy’s life is full of simplicity.  He manages a tight routine of work, activities and evenings with staff members in his home.  He can barely read, has a limited understanding of the world around him and relies on others for so much help. Oh what a sharp contrast to my experiences and world view.  How I long to be free from the social pressures Willy knows nothing about.  How I long to live in that simplicity, to be free from the awareness of insecurities and peer pressure and social status and keeping up with the Joneses.  How I long for pleasures such as Batman Legos and coloring pages and the joy in being able to find Luke 2 all by myself.

What this Christmas season has taught me is just this – I need, no I want, to do a better job, a more purposeful decision, of choosing Jesus first.  I do not want to get caught up in the looking back at a journey that was not supposed to be.  I do not want to get caught up in comparisons.  I do not want to get caught up in self focused living I so quickly accept.  I want to be more like my friend Willy.  I want his passion for Jesus.  I want his joy in the everyday mundane details of my life.  I want his peace when life overwhelms and does not work out as I plan and hope for.

As darkness overtakes the light, as evening dances on to close out the day, as the chapter of Christmas planning and family time and holiday events quickly comes to a close, and as fatigue overwhelms my mind, I am reminded of His mercies and His greater plan for my life.  And in the reminding, in the remembering of the why, I am blessed with the assurance of my salvation, of the undeserved love lavished on me by a Savior who simply came, who showed up and paid the ultimate price – Jesus, my best friend.

Thanksgiving has come and gone, and now is the time for shifting gears and thinking about putting up the tree and decorating the house.  This year I was the gravy maker at two family events. I came to realize not everyone knows how to make good gravy.  I guess I never learned how to do it, I just simply did.  It is really quite easy – put the turkey drippings in a sauce pan to warm, take some out and  mix with cornstarch until smooth then put back in the pan, add some chicken broth and milk, stir in some salt and pepper, bring to a boil until thick then serve.  Gravy making came easy for me; I do like to cook so maybe it is just one of those things that I never really had to think about.

We all have those tasks in life that are mindless, simple and easy to do.  Cooking and baking and pitching in when help is needed are things I can do without thought.  I enjoy helping out.  I like to be in the kitchen.  I thrive when given a task to complete.  I love a good challenge.  I feel productive and good about myself when I am needed and doing.

Yet, there is another side to my madness.   A side that is not so organized and driven and productive.  Because when I look deep down into the depth of my soul, into the corners of my heart, into the shady forgotten remnants of everything personal, there is a side of me that is critical and cynical. I excel at taking the proverbial two by four and whacking myself over the head repeatedly in a torturous manner. I simply do not let things slide.  I do not let myself forget every word I have harshly spoken and tone just a bit too sharp.

I am forever saying unforgiveness breeds discontent. It is the summer weed choking out the beauty of the lush garden.  It comes to steal joy and wash away the color of contentment.  I pride myself in forgiving others and moving on.  In pouring out grace to the repentant heart and walking away from the past wrong. In setting free the chains of bitterness. Yet in my own heart, in my personal life story, I buck and fight and rebel from giving myself the same grace I so quickly lay in the hand of another.  The gift of grace is freely given to others but forgotten within my private sanctuary.

Just recently, I opened up to someone as I often too quickly do then later looked back in wonder of how I was received.  I am notorious in my transparency to spill my heart’s contents all over the person in my presence.  And in that trait, in the action of being open and honest and forthright, I often look back with regret and question over whether or not I was received with grace.  Whether or not my words and my heart were well understood.  Whether or not the person will gently take my tenderness and guard it with sincerity and thoughtfulness.  And at the end of the day, I often look back with regret for being the open book, for not guarding my heart a little more closely. I question God as to why He would create such transparency in the genetic make up of all that makes me who I am.

That critical, cynical self comes out to play.  It breeds doubt and negativity.  It spreads disease though the garden of self worth and wreaks havoc on the produce of a well tended heart.  For in my ability to forgive and accept others comes a lack of grace for myself.  Being hard on me is as easy as tying shoes, as mindless as brushing teeth, as simple as sorting laundry.  It has become a daily chore, a thoughtless task.

Just as Christ forgives us, we are expected to forgive others.  He says it Himself – we are to forgive seventy times seven.  I can easily extend that grace to others and have said to my children and husband numerous times – if we accept God’s forgiveness and grace for our own sins, how can we not extend that same grace and kindness to others?  We cannot receive the gift of freedom yet not hand out that same forgiveness to others.

In my preaching of grace, in my reminding of selfless forgiveness even when it is hard and can feel forced, I forget about my own heart.  I neglect forgiving  myself.  I stray from letting myself off the hook.  Remember that time you shared your heart and later doubted the receiver’s acceptance and understanding?  Three whacks from the proverbial two by four.  Remember when you spoke harshly and said the wrong thing causing hurt feelings but recognized it and asked for forgiveness? Two more strikes, feel the pain.  Remember when you miscommunicated causing confusion and frustration?  It all worked out in the end, but five more strikes for not being perfect, for screwing up.  Remember when you should have guarded your heart and held things in so you would not have felt vulnerable?  Another strike for being foolish.

I am the queen of killing my self worth, of bashing my value and destroying the good in my heart.  And when I look back in wonder, when I sit and ponder why I am so hard on myself, when I search for the origin of my messy, so-not-true statements to self, I see a woman who longs for peace.  I see a teenager who struggled with fitting in and being accepted.  I see a mom of littles who was too hard on herself and tried to be a bit too perfect.  I see an adult who put up walls of protection when she perceived others feeling sorry for the life she was handed. I see a child of God who is broken.

Because at the end of the day, Satan comes to steal and destroy.  Our Heavenly Father says so Himself in John 10:10 – The thief comes only in order to steal, kill and destroy.  I have come in order that you might have life – life in all its fullness. In my self destruction, in my negativity, in my unwillingness to forgive self, I do nothing but please the one who loves to destroy me.  I want life in its fullness.  I desire peace and joy.  I long for truth and a mind set on positive thoughts.

I have had enough of the self bashing.  I am tired of the self deprivation.  I am exasperated with the doubting of others acceptance of the good in me. Jesus came to give me life.  Me.  He came just for me.  I can hardly accept He loves me enough to come and bear my pain, to take away my personal beatings, to wash me in the blood of forgiveness.  And in that acceptance of everything worthy of Christ, my role is to also accept everything worthy of myself.  My role is to relish relationships.  My role is to walk in thanksgiving for people who care enough to listen and connect.  My role is to forgive myself when I say the wrong thing or doubt someone’s intentions.  My role is to love myself so I can adequately and genuinely pass that humble love onto others.

It is not enough to simply accept God’s grace then deliver that same grace to others.  We must take it a step farther and extend the hand of grace to ourselves.  The God who placed every star in the endless sky is the same God who deeply loves and passionately forgives.

Take a look inside your own heart.  In what areas do you struggle with forgiveness?  Where do you need to learn to live life to the fullest? How can you extend the hand of grace to yourself and others?

 

It has been far too long since I have updated! Life here is good, and we are now slowing down with sports over for the season. We are falling into Fall, enjoying the cooler weather,  and looking forward to the upcoming holidays.

Brad just finished his senior football season, and it was bittersweet to watch it end. He had fun, played well and is already thinking about golf season. His class load is pretty easy right now which is nice and one of the perks of being a senior.

Sidney is done with volleyball and turned 16 two weeks ago.  She loves her new independence and started a job at HyVee where Brad works.   Club volleyball is not going to keep us busy this spring as she decided not to play. She said she wants to work and have a social life which makes perfect sense to me. It’s absolutely her decision.

Trevor is enjoying his freshman year and keeps very busy with student council and all his friends. He’s has been having lots of problems with lightheadedness and dizziness so we put him on a heart monitor for two weeks which was negative thankfully and now we are going to take him to an ENT to see if it is vestibular with his ears. I pray we get to the bottom of this soon because I know the symptoms are driving him nuts.

Ryan has been doing well too. He has adjusted nicely to his school schedule, and Travis does such a great job taking care of him during the day! He is actually in surgery right now having his cecostomy tube changed out and dental work done. It is an easy surgery so I anticipate we will be heading home in a few hours.

I will post again soon and am going to try to do a better job of staying on top of this blog. I will tell you with three kids in high school life has been so busy that sometimes all I can remember to do is come up for air. Travis and I are doing well and are just enjoying this season of life with teenagers.

Much love to you all!

Because I love you, I will watch you fail and allow it to happen when I have the power to help you succeed because failure builds character

Because I love you, I will callous my knees in prayer for your lives, your day, your hearts because I know God is faithful and prayer is a powerful weapon

Because I love you, I will nag you to clean your rooms, rinse your dishes, and pick up your stuff scattered around the house because you have to learn pride of ownership and responsibility for yourself

Because I love you, I will allow you to walk out the door knowing full well your day will be one of the hardest you have ever faced because I cannot intervene and fix your problems

Because I love you, I will pray God’s Word over your life every single day and beg Him to keep you safe and bring you home to me at the end of your day because I cannot let worry overtake me

Because I love you, I will watch you make mistakes and ask for forgiveness because you have to learn humility and own up to your decisions

Because I love you, I will lie in bed at night waiting for the door to open so I know you are home before I close my eyes to sleep because I need to know you are safe

Because I love you, I will require you to go to church and youth group because your faith in Christ needs to be challenged and strengthened

Because I love you, I will repeatedly bring up difficult subjects like dating someone who is not a Christian, going too far sexually, setting boundaries in relationships, compromising your beliefs to gain your friends’ approval and choosing to go to parties even if you say you will not participate because you have to learn to make good choices

Because I love you, I will make you do your own laundry, clean toilets, pick up dog poop, pull weeds and learn to iron because you need these skills to be independent some day

Because I love you, I will continually ask you what you did when you were out with your friends, out with your boyfriend/girlfriend, out with kids I do not know because accountability is a discipline you must practice now

Because I love you, I will stay up until 1 am fixing your outfit, go out in a snowstorm to buy you a poster board and retype your paper when I have a migraine because someday I will miss these tasks

Because I love you, I will make you learn how to cook because finding your way in the kitchen is a fundamental skill to moving out of our home

Because I love you, I will challenge you to dig into the Bible when you do not know what to do about peer pressure, gossip, unfairness and betrayal because God’s Word holds the answers to every problem life will throw at you and you must discover them yourself

Because I love you, I will make you sit on the couch or at the kitchen table and tell me about your day because I want you to learn to share your heart with others

Because I love you, I will sometimes give you grace when you deserve punishment because you need to understand God’s grace through Jesus’ death and resurrection on the cross

Because I love you, I will make you play games with me, be silly and watch me be ridiculous and goofy because you should never forget how much fun family can be

Because I love you, I will secretly close my door, sit on my bed and cry because watching you grow up hurts my heart, I miss the days when you were younger and I just want more time

Because I love you I will get upset and tell you when you disappoint me because you need to learn your decisions affect other people’s lives and you have the ability to break someone’s spirit with your words and actions

Because I love you, I will bake cookies for you and your friends when I am sick and would rather be doing something for me because it brings me joy

Because I love you, I will cancel plans with my friends to be home when you want to hang out in the basement with your friends because your happiness is more important to me than my own

Because I love you, I will work overtime and sacrifice my own wants and needs so you can have the school shirt and the expensive shoes you want because I know how important it is to you

Because I love you, I will embarrass you in front of your friends with my “I love you”s and hugs because you need to know you mean the world to me

Because I love you, I will exasperate you when I do things you can do yourself because I just want to feel needed

Because I love you, I will hurt your feelings with my honesty instead of telling you what you want to hear because you have to learn to accept and manage truth

Because I love you, I will not always give you answers when you want them instead pointing you to Christ because some day He is all you will have to turn to

Because I love you, I will believe what you tell me when you have earned my trust because you have not given me a reason to doubt you

Because I love you, I will let you grow up, figure out your own value system and attain more independence because I trust God will carry you on your journey to adulthood

Because I love you, I will celebrate your success, cry when you are hurting and worry over you because I am your biggest fan

Because I love you, I will let you grow up because I know I have done my very best to raise you and God will take care of you always

Oh my….I have been away from this blog for over a month!  July has always been a busy month for us, and this year proves to follow suit.  We are now twelve days away from the start of a new school year which seems impossible as summer cannot already be saying farewell!

Brad:  Our oldest is entering his senior year of high school.  It sounds like a cliché to say I do not know how this is possible, but it is true, and here we are.  I am very excited for him, and all the changes this year will bring.  He just finished three weeks of football camps and has changed positions from center and guard to fullback.  He is still punting and will continue in that role this fall.  I absolutely love high school football and will be so sad to see this season end, but considering we have not even had our first game, I cannot allow my mind to go there.  Instead I will just enjoy the season, one game at a time.  Brad just bought a car and his sister is getting his old car; he picks it up on Monday and is very excited.  Otherwise finishing his senior pictures and his application for National Honor Society are on his radar before school starts.

Sidney:  She has been a social butterfly this summer and has made some amazing, strong friendships.  God has blessed her with a couple very close friends who she is with all the time.  She is actively counting down the days until she turns sixteen (two months to go) and has enjoyed three volleyball camps this summer.  Sidney has a new boyfriend who we love and has developed a close, mentoring relationship with Taylor, Ryan’s respite worker.  She is enjoying the blessing of relationships and making memories which is so important at her age; it is fun to watch.  Sidney is looking forward to finding a job in the next couple of months and is simply growing up so fast.  Fall volleyball will be here before we know it and with practice, games, homework and friends, she will be a very busy girl.

Trevor: He is looking forward to Zoo School this fall as he enters high school (the district’s science focus program) which is located at the Lincoln Zoo, hence the name.  He will go to the regular high school for his first three periods then switch to Zoo School for the rest of the day.  I am excited to see how he likes it, and everyone who has attended that I know of has absolutely loved the program.  He had a very busy month with our vacation to Utah then FCA camp followed by a trip to grandpa’s lake house then a church trip to Colorado and the next day he left for leadership camp with our high school’s student council.  I could hardly keep track of his schedule, and it seems like he was never home in July, but he has been having a  fun summer with friends and all his activities.  He is now busy with student council meetings (and friends of course) and is about to enter his freshman year.  I know he is really excited to finally have junior high behind him (isn’t everyone?).

Ryan:  Ryan’s summer has been just fine.  He sleeps and plays and goes to therapy twice a week which is enough for him.  His heath has been pretty good with an occasional infection around one of his tubes, but otherwise things could be a lot worse.  His myoclonic jerk seizures are getting a lot more severe, but there really is not much we can do about those anymore since we have tried every drug available.  Right now we are fighting our health insurance as they suddenly dropped one of his seizure mediations saying he does not need it anymore.  Travis has spent more time than either of us cares to admit fighting with insurance and keeping up with the doctor’s office who is trying to help.  I do not understand how an insurance company can just drop a patient’s medication which could have terrible results to Ryan’s health.  It is costing us $42 each day to keep him on the drug which is adding up fast, and we simply cannot spend all this money on drugs insurance should be covering.  It is so frustrating, and we feel helpless.  I finally called the manufacturer this evening and left a message asking for their help which may or may not be effective, plus Travis wrote a letter to the governor’s office.  I hate how insurance runs our lives in a sense, and that is as soapbox I will stay off of!

Travis:  He is doing great.  This summer he has been able to pick up some extra hours at work with Sidney home to babysit (she likes the money).  Travis went to Colorado with both of the boys and had a great time camping and spending time with the kids and their friends.  Our lives revolve around the kids right now so there is not a lot going on with Travis otherwise. He will be very busy once school starts running the kids around, making sure they eat and stay organized and doing everything a stay at home dad does which for him is a whole lot.

Me:  I am still enjoying my job with Medicaid and recently accepted a new position as the administrator over my unit.  I supervise twelve employees, and it is a great unit to work with.  The transition has been good, but I did tell Travis the other day I feel like it is baptism by fire with some of the difficult situations I am facing right out of the gate.  It is a challenge but I really do love it.  I was able to go to Boston this week for four days to attend a conference.  There were five of us from Nebraska, and we had a good time.  Sightseeing in downtown Boston was a lot of fun, but it always nice to come home.  I am just excited for football and volleyball to start and know what a busy fall we will have.

Life just keeps marching on and does not slow down at all.  The Lord has absolutely blessed our family with lots of laughter and fun together, and I am so grateful for the joy each one of my kids adds to my life.  I know these years will slip by so very fast, but for today I will not forget to give thanks for all the good because there is so much of it.  Even when things look bleak and life seems harder than I would prefer, there is always so much to be thankful for.  My focus definitely determines the course of my day as my attitude really guides my perspective.  I think we can all agree that is true for each one of us.  Many blessings to you all; you are loved!

Kim

We are more than a month into summer which means there are now only six weeks before the next school year begins.  Six week that will fly by with camps, trips, fun dates, work and friends.  Six weeks until we have three high schoolers, one in his last year.  I can hardly think about this being our last football season, let alone think about this being Brad’s graduation year.  One thing at a time for this momma.

We just returned from a week in Park City, Utah, where we rented a huge house with a pool with Travis’ brother, his family and their parents.  There were 13 of us, and we had a blast.  It was a great week with lots of laughter, wrestling, playing games, crazy jumps and flips off the diving board, rafting, alpine slides and coaster, a distillery tour, hiking.  I highly recommend a trip to Park City as it is a beautiful, relaxing place to visit.  Just 20 minutes on the East side of the mountains from Salt Lake, the city is very nice and there is so much to do.  Brad and I took off for two hours one evening so I could take some senior pictures.  For someone who has not taken a photography class since my sophomore year of high school, I think I did pretty good.  We will take more in the next few weeks with his golf clubs and drum set, but this was a good start.  And we had a lot of fun too.

Travis and I are staying very busy with work, taxiing kids around and trying to keep schedules straight.  Such is life with kids as all our other friends in the same boat are experiencing.  Some days I long for the days of old when the kids were littles, and we still had routines and nap time every day.  But I look at them now and appreciate the more mature, relational connections we have made.  They are fun at all ages, but I have to say these teen years have been such a blessing. As busy as we are, I would not change a thing and absolutely enjoy the kids God has given us.

Much love to you all!

Someone was less than thrilled with the people coming in to “bother” him before surgery and kept covering his face.

Ryan did just fine this morning and is now cuddled on the couch with Sidney sound asleep.  The surgery itself lasted less than 20 minutes; his G/J tube was replaced, his upper GI system was scoped and biopsies were taken.  He did great.  This was the first time he has had surgery at Boystown, and the staff there was excellent.  The anesthesiologist got a bit hung up on Ryan’s seizures, but I calmly assured him there have been absolutely no issues getting general anesthesia well over twenty times with all his surgeries, dental work, CTs and MRIs.  And sure enough, he came through in his usual fashion like the champ he is.  He will need another dental procedure this summer which will require doing this all over again, but Ryan’s dentist does his procedures at the Catholic hospital here because they have the most state of the art equipment.  Other than that, we do not have anything else scheduled medically for him aside from the usual biweekly therapies at Madonna.  Thank you, once again, for sustaining Ryan and the rest of us with your prayers.  We know the Lord honors them, and we greatly appreciate your support over the years.

Much love to you all!

 

Thursday, June 4, Ryan is having surgery.  It is nothing major, just a simple endoscopy and G/J tube change.  We have been very blessed so far to not have any post op complications and are praying tomorrow will follow suit.  A few months ago we started noticing Ryan’s J tube (feeds formula into his small intestine) was not working right.  As of two weeks ago, it is completely unusable.  After an abdominal xray, we found out the tube had coiled back up into the stomach.  We have been doing all his tube feeds into his G tube now which feeds directly into the stomach.  The problem is that his stomach likes to act up and stop emptying in a reasonable time frame (gastroparesis) which causes vomiting.  To combat this, he has had a G/J tube for some time now, and it has been a lifesaver.  He gets his tube feedings 18 hours every day into his small intestine and his medications twice a day into his stomach.  It works!  So off to surgery we go to get the tube replaced.  The doctor will do an upper scope and take some biopsies as well just to make sure things are OK in there since his large intestine has already stopped working and we have no idea why.

Otherwise things are well on the home front.  Busy does not even begin to describe our summer, but it is all good things.  We have numerous sport camps and clinics, leadership camp, FCA camp, sports conditioning, golf tournaments, vacations, PT and OT, a boys trip to Colorado, you name it we are doing it.  There is not a week where most days are not filled with some activity, usually more than one.  It keeps the kids busy, they are having fun which is important,and thankfully they are not overloaded.

I will update tomorrow after Ryan is out of surgery.  We have to be there at 7:45 and surgery is scheduled for 9:15.  We appreciate your prayers and anticipate things will go smoothly.  God’s got this, so I am not going to worry.

Much love to you all!

Once again the edge of summer has arrived and with it comes a carelessness that whispers in the wind, a joyful spirit which hangs like morning dew.  The weight of homework, tests, deadlines and projects passed in the blink of an eye, and in its place come sleepy mornings, laughter with loves and freedom to roam and play and look into the shining sun.  My own sweet memories of summers gone by bring a skip to my heart as I remember splashes in the chlorine water, counting train cars sitting in the back seat on East coast trips, skateboard runs down the circle pavement, watermelon drips on my t-shirt, wet suits and Barbie doll towels hanging on faded wood, sweet juicy strawberries picked from the growng garden and star filled night giggles with my girls. Oh to be a young summer soul again and not have a care in the world, to only wake with thoughts of friends and sunshine.

As summer returns, the calendar fills with activity and tasks, trips and adventures.  The days will pass with familiar quickness in my attempts to slow the clock, to reign in passing days, to soak in every giggle and memory and moment as this momma’s heart breathes the heavy sigh of recognition of children growing to young adults.  Sadness overwhelms with the memories of days gone by while pride abounds for the results of tender parent love and answered prayers only possible because of a gracious, faithful Father.

So here’s to you, my big littles.  Here’s to sharing food and living life around the table, to lake trips and driving through the mountains, to college visits and camp sendoffs, to fires and s’mores, to couch time and late night chats.  Here’s to hopes for a summer to remember.

Brad:  He’s a senior now.  My brain cannot wrap itself around the recognition.  How we went from a little boy barely able to strap his backpack around both arms and needing reminders to tie shoes to a six foot tall charming, sweet young man is beyond me.  The years have passed with a quickness I cannot halt.  So much to soak in with so little time remaining before he is off to new adventures, college and learning a new sense of independence.  For today I will relish the beauty of seventeen.  I will land on my knees and thank God for a firstborn who fills our home with laughter and sensitivity and big smiles and crass jokes.  His summer days are nearly full of work and golf and camps and friends.  Just how warm, humid days should be for a teenager.  His carefree, engaged heart brings such joy to our home.

Sidney:  Now a sophomore, the rays of sun will brown her skin as she fills her days with cherished friends, volleyball, and working out.  Her beauty grows as she continues to mature into a young lady who love Jesus and puts everyone else above herself.  Sacrificial love is the language she speaks and the clock will tick to the cares and feedings and laughter and cuddles she will infuse into her beloved youngest brother in the days to come.

Trevor:  Like a weed in the hot summer garden, he has shot up to new heights this year.  From big sister reminders that she was still taller to standing eye to eye with big brother and dad, he has changed before this momma’s eyes…at least seven inches of growth! An introspective young man, he opens up in quiet moments and to grasp the cherished heart is insight into a loving, sarcastic, bright soul.  His freshman year is upon him, but first, new experiences await for camp, golfing, student council commitments and many moments with friends.

Ryan:  Always changing yet never progressing, he has been stoic in this month gone by.  Infection and seizures have overtaken his body as his days have been spent sleeping and being loved by daddy.  In the last three weeks, only 1 ½ hours have been spent with school friends and staff.  Missing the long summer goodbye and the rush out the door to humid days ahead, he spent his day resting in the quiet of home.  The feeding tube bringing nourishment to his weakened body has been acting up causing frustration and tears for Travis and me as we await a surgery date to replace the broken tube.  Summer for this guy means sleep and shade as his little body does not acclimate to sun and heat. One thing for sure, he will be loved beyond measure.

Parents:  Life is spent working to feed kids and friends, planning and organizing and constant calendar updates to the warm days of June and July as children move in every direction.  Travis will work as much as possible with Sidney able to take over Ryan’s care, and she certainly cherishes the financial gain of time with the baby brother. Our sights are set on weekends at the new Okoboji lake house and a Utah week where summer days will find us backyard swimming with cousins, hiking and sightseeing, flying down alpine slides, ziplining through mountain air and venturing into white water rafting.  Summer will find us working and playing with kids and focusing on what we do best – managing kids schedules and future plans.  Our hearts and days are wrapped around growing teens who will all too soon be off doing their own planning and organizing and traveling.  But this mother’s heart would have it no other way than to spend my days focused on the ones who bring gladness to my soul.

Fifteen years.  It really has been that long since I have seen your beautiful face, mom.  How can fifteen years fly by so quickly yet seem like yesterday when I held your hand and watched you take your last breath as my sisters and I gave you permission to leave us for Jesus?  I felt so relieved you were finally free of all the pain and destruction MS had given you but at the same time devastated at losing the security and love you provided.  When I span the days and years that have brought me to today, the memory of your love is a cherished piece of my heart.  One of my first memories is sitting behind our neighbor’s basement bar as the tornado sirens whistled and we took cover together because the dads were both out of town.  I remember hiding in the cabinet like my big sister but being scared of the dark.  When I rushed out of the darkness, your arms and pregnant belly were there to tuck me in close to your heart.  That same protection and acceptance carried me for years because I always knew no matter where life took me, you would be there with open arms to love me through the next celebration and devastation.  I miss your laugh, mom.  I miss that contagious, uncontrollable laughter when tears would fall and the laughter kept going and going.  Sometimes I would roll my eyes thinking you were so silly and ridiculous, and other times I would be right there with you giggling as tears rolled down my cheeks too.  No matter the situation, you knew how to laugh and taught me not to take life too seriously because everyone needs to celebrate laughter and look on the positive side of life.  And oh did you stay positive up to the very end.  An eternal optimist, you were always looking at the good in others, always pointing to the positive.  It is a quality I have always admired about you and strive to emulate.  All those times when my sisters and I would sit at the kitchen table playing Nerts with you are memories so very near and dear to my heart.  The competition was fierce and sometimes you would say “damn it” and I would laugh because my own mom, nearly perfect in my eyes, could cuss.  As much as I hated your bland style of cooking (which Carrie, Amy and I still talk about), I loved the time in the kitchen with you.  You let me experiment and help, never making me feel I was in the way.  Instead, you let me cook right alongside you teaching me the foundations I needed.  Most of the time I would sit on the kitchen counter as you worked and I would tell you every single detail of my life.  I do not remember wanting advice or feeling judged by you for whatever I would share.  Instead, you led me back to Christ, you accepted my emotions and opinions.  You gave me your unconditional, complete attention.  Sometimes you told me things I did not want to hear, and I would get frustrated knowing you were right…although I hardly ever admitted it.  And what you taught me in those precious moments was I mattered.  And now that I am a mom, because of your listening ear and gentle heart, I have learned to embrace those moments when my own kids open up and tell me the details of their day and share the essence of their souls.  They are precious moments, with you and with them, brought together through the span of time, weaved with the knowledge that a mom has the ability to bring such peace and comfort to a child’s heart.    My childhood was safe because of you.  It was comfort and warm cookies and chocolate milkshakes for breakfast (with a raw egg blended in for protein of course).  It was disgusting carob chips my sisters and I hated and farm fresh eggs when you joined the co-op fad.  My childhood was watching you look in my closet and under my bed to make sure there were not any monsters or men who were going to grab my feet while I slept.  It was shopping trips and walks with the dog. It was arguing and telling you I hated you knowing it would crush your heart yet secretly feeling bad for saying it.  It was learning to ask for forgiveness and trusting you would always embrace me with love and grace when I was so mean and rude to you.  I learned and embraced mercy because of your example in my teen years when I was hurt and rebellious and absent.  I miss you mom.  I miss the age spots on the back of your hands.  I miss stealing your warm socks and sitting on your bed while you got ready for the day.  I miss sharing giggles and enjoying Hostess Cupcakes and trips to KFC together.  I miss calling you up at any time of the day knowing you would never tell me you did not have time for me but would patiently drop what you were doing to talk or more honestly, to listen.  I miss the old days in Omaha watching you play the hand bells and sing in the choir.  I miss learning how to quilt and teasing you for the piles and piles of material you collected over the years.  I miss walking in the door and knowing where to find you. I miss swimming in our back yard as you and your best friend sat on the deck talking and laughing.  I have so many wonderful memories of you.  Your beauty was more than your sweet smile and engaging, accepting heart.  You reflected the love of Jesus to everyone around you. Even in the height of your physical pain and suffering as you laid in that nursing home I hated so much, I saw the light of Jesus in your eyes.  You always said if only one person came to know Jesus because of your suffering, because of the pain life handed you those last few years, then it was all worth it.  Mom, you taught me the backbone of my own pain, the essence of my own trudging through disappointments and failures is Jesus.  You showed me the heart of Jesus in how you lived your life every single day.  So today mom, today as I get to spend time with my own children, know your love, your example, your sweet words of encouragement, your effort and dedication to raise me to know Jesus…it is paying off.  You showed me how to be a mom, how to love my kids with grace, how to mess up and still receive forgiveness, how to laugh no matter what life hands me.  You showed me the best of me is all because of the best of you.  I love you and miss you, mom, and cannot wait to run into your arms one day when I get to Heaven.  Oh what a giggle party we will have, tears and all.

School is winding down with only three weeks until summer officially begins.  And that means only three weeks until we have three kids in high school with the oldest in his senior year.  Boy am I not ready for this!  The years definitely fly by faster and faster the older the kids get.  I love the young adults they have become but it is hard to watch them get closer and closer to leaving the house.  But that is our job as parents – to prepare our kids for life on their own.

Two weeks ago, Travis and I were at a beautiful outdoor wedding and on the way home, he told me he could not close his right eye all the way and his face was getting numb.  The ER nurse in me immediately thought “stroke scale” as I went through the mental checklist in my mind and I asked him every assessment I could think of as I drove us home.  The hard part was trying to figure out how to tell the kids “I think your dad has Bell’s Palsy, but we really need to make sure it is not a stroke so I am taking him to the ER”.  At the end of the night, I came to two conclusions – 1. after an MRI of his brain, I was right about Bell’s Palsy and 2.  I am so glad I do not work in the ER anymore!  Poor Travis has been dealing with a flaccid face for three weeks.  He looked like a stroke victim as his symptoms got worse over the course of the next few days, and he struggled with trying to talk so people could understand him and dealt with lots and lots of stares.  Thankfully he is recovering nicely, and the paralysis on the right side of his face is slowly fading.  He can actually blink in unison and close both his eyes.  And when he smiles it is not so noticeable that he has anything wrong.  For those of you who do not know, Bell’s Palsy is thought to be viral and paralyzes the facial nerve on one side of the face.  It is usually treated with an antiviral and prednisone but studies are inconclusive as to whether those drugs help or not although my nurse friend who worked in an ENT office for 35 years says the drugs help people recover faster which is the case for Travis.

Ryan is struggling with c diff again, and his seizures have been pretty bad too.  He always has lots and lots of seizures but his myoclonic jerks are dropping him to the floor. Just this evening he had a huge drop seizure when I got him out of the van, and he plopped rather hard onto the garage cement floor.  The poor guy is going to have a sore rear end tomorrow.  We will be spending a lot of time at home in the next week as he cannot go back to school until he is off the Flagyl which he starts today.  His cecostomy got infected last week and the broad spectrum antibiotic we put him on caused the c diff; he was hospitalized with c diff in November too when his stomach shut down again.  It is always something with this kid! It hurts my heart to watch Ryan constantly struggle with seizures then on top of it have to struggle with a failing GI system and constant infections.  His arms and legs are getting skinnier and skinnier as his muscles weaken.  He is so quiet these days hardly ever letting out any sound although saying “do you want to take a bath?” will always elicit a big, happy squeal!  It is simply his favorite thing to do.  Ryan loves bath time!  It truly is the simple things for our cute boy.

Brad had prom last weekend at his high school and the weekend prior at his girlfriend’s school.  It is quite the ordeal but it was fun to see him all dressed up.  Here he is with his best friends and his girlfriend Callie.

He is having a fun time with golf this year and usually spends six days a week on the course.  Thankfully we have had some beautiful weather that has not hindered their playing time.

Sidney finished her club volleyball season and starts summer 4v4 league next week then will join a sand volleyball team in June.  She will be babysitting a lot this summer so if anyone needs a fabulous, responsible teenager let me know as she is available.  She is excellent with special needs kids too because of her brother obviously but she enjoys every age.

Trevor is doing great and had fun with his friend Will at our church’s first respite night where we offered three hours of babysitting and fun while parents enjoyed an evening out.  We had around 40 kids there with about 18 having special needs; the rest were siblings of those kids.  It was a blast!  We are doing it again in July, and I cannot wait for that night to get here!  It was certainly a lot of work but we are excited to see how this ministry grows as we extend the invitation to others in the city.

Trevor and Will have gone to school together since kindergarten and they have a beautiful friendship.

Sidney was a buddy to Rose, a sweet, energetic six year old who recently started attending our church.

And sweet Ryan was there too although I am not sure he had as much fun as the other kids.  I think it was a bit much for him after a while but he was a trooper and handled it well.

I think the biggest lesson I have learned over the past few weeks is simply this ~ the Lord allows painful situations in our lives to occur so He can use them for His glory.  There are so many things that have happened to Travis and me which, at the time, I seriously wondered why God would allow such pain.  With time, I have been blessed to see what beauty God can make from those heart wrenching seasons when we continue to trust Him and place our every desire and dream and need and worry into His care.  I can look back and say “if this had not happened, I would not be in the situation I am now where God is working”.  The Bible says And we know that in all things God works for the good of those who love him, who have been called according to his purpose ~ Romans 8:28. All things…God has certainly been faithful in using all things for His glory and purpose.  I cannot say I can see positive outcomes from every difficulty we have faced, but I can say in every difficulty He has made good things in one form or another.  There is peace in my heart knowing I am exactly where I am supposed to be for today.  What a blessing it is to walk with a faithful, loving God who holds our every tomorrow as faithfully as He has carried us through every yesterday. 

It is no secret I have always been very independent.  Even as a young child, my mom used to say my favorite saying was “I do it myself!” which, of course, sounds exactly like something I say even today.  I guess when God created me in my mother’s womb, for some reason he gave me an extra dose of independence and stubbornness because I do not lack either of those qualities.  But there is a flip side because if there is something I do not think I can do, I will not even try or attempt it.  I will not even give it a shot.  No chance, no effort.  As strong as I can be about some things, I can be the complete opposite as well and not even consider something if I do not think I will be able to do it well. Like tennis or croqueting.  I say it would be fun, but I know I am terrible at it, so now I do not even give it another shot. It is not a fun quality to possess, and I really dislike that about myself.  I have to work very hard to convince myself everything worth doing is worth doing well. I am better the older I get, but it is far too easy for me to slip into that thought process of just giving up before I have even attempted to start.  So I guess you could say I dwell in extremes.  Either I am too stubborn and independent or I do not even try.  There does not seem to be a happy medium with me.

And with those lovely characteristics comes a fix-it personality where I am convinced I can come up with a perfect solution to just about every one of my problems.  Unfortunately, along the way, I have gotten too good at relying on myself instead of trusting in my Heavenly Father to manage my life.  It is a real struggle.  Sometimes walking by faith is really hard. I am sure all of us can say that if we are honest.  I often find it difficult to really grasp that God loves me enough to provide for my hopes and dreams.  And some of those hopes and dreams are very much God’s and not my own.  For example, Ellisbrook.  Most of you know of our God given, God breathed, God driven dream of having an acreage where disabled adults can live with us.  Where we can raise chickens and goats and have a pond to fish in and grow a huge garden.  Where disabled adults can live with a family (us!) and help around the house folding laundry and cooking dinner and washing windows and matching socks.  Where we play games as a family, eat dinner as a family, learn about God as a family, go to church as a family, live life as a family.  A place to belong and a place to call home.  I would never have believed it if anyone told me years ago one day I would dream of this place called Ellisbrook.  Even today, it still feels like such a far off, unattainable dream.  It seems it will never come to fruition because there are too many roadblocks, and the biggest is money.  But every time I try to come up with a plan or a solution to every roadblock, I feel a very strong sense of God saying “wait”.  I hear Him say “I will provide the land”.  And then I tell him in my inpatient manner (yes, another of my lovely qualities) to hurry up and get moving on this Ellisbrook dream He gave us.  I so easily forget the God who parted the Red Sea to save the Israelites is the same God who can provide land and a house for Ellisbrook.  I so easily forget the God who prepared Paul for a journey of suffering and saving souls is the same God who is already preparing the hearts of the men who will one day live in our home.

I love the show Fixer Upper.  If you have not seen it, it is on HGTV (one of my all-time favorite channels) and is a show about a husband and wife who help couples find houses in need of remodeling.  They do their magic, and every time, I am simply in love with the outcome.  I love the vision Chip and Joanna can see when they look at old, falling apart, outdated walls.  Joanna made a video that is circulating on Facebook which I happened to watch.  It strengthened my resolve to keep believing God will use Travis and me someday with Ellisbrook.  And it made me love the show even more when I realized their passions are very much God created just as my own passions for Ellisbrook.

Watch and be inspired to continue after your God-given calling…..

I love what she says about believing the lie that who I was wasn’t good enough. She goes on to say she felt God saying “I have a calling for you; you are going to have a platform one day…..I’m going to say for you to go and I’m going to need you to step out and go!”  And, “If you trust me with your dreams, I’m going to take _____ further than you could have ever dreamed so just trust me”.  What a beautiful testimony of God planting a dream and eventually fulfilling it….in his timing though which is the key!  I hope and pray for the day when I can also say that God has taken my dream and done far more with it than I could have possibly hoped or imagined.

Sometimes it is hard for me to grasp that God loves me enough to use me.  It is a hard concept for me to really wrap my head around.  I see how He used so many amazing people in the Bible. I see it even today how He uses others to make such an impact for His kingdom. History is fully of people used by God.  I just have a hard time believing He is just as passionate about me to use me.  Yet I know this dream is real.  I know Ellisbrook is going to come to fruition.  I know one day the joy of caring for disabled adults is going to be my reality.  And so these verses in Ephesians have become so very special as I keep praying and trusting God to make Ellisbrook come to life.

Ephesians 3: 14-20 ~ When I think of all this, I fall to my knees and pray to the Father, the Creator of everything in heaven and on earth. I pray that from his glorious, unlimited resources he will empower you with inner strength through his Spirit. Then Christ will make his home in your hearts as you trust in him. Your roots will grow down into God’s love and keep you strong. And may you have the power to understand, as all God’s people should, how wide, how long, how high, and how deep his love is. May you experience the love of Christ, though it is too great to understand fully. Then you will be made complete with all the fullness of life and power that comes from God. Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think.

I know God is capable of accomplishing infinitely more than I can ask or think.  He certainly gave me a dream that was never my own creation so, of course, He can do more than I can imagine.  In my waiting, in this time of trusting His timing over my timing, in this period of sitting back and believing in His provision, I am learning to find joy in the moments before me.  Because I know one day this dream of Ellisbrook will be my reality.  I know some day this desire to care for disabled adults will fill my heart with joy and fill my home with laughter.  The day is coming when God is going to do something amazing.  I am still waiting, but in the wait I am learning to be content with His provision for this moment.

What are you dreaming?  What has God placed on your heart to do or go or be?  He’s working.  In HIS perfect timing He is working.

I feel like the lone passenger on a sailboat out in the middle of the deep blue sea.  The sun is shining, the seagulls are seen and heard overhead, the horizon stretches for miles and miles, but the wind is absent.  It is complete silence and with the absence of the wind, there is the absence of strength to move my boat.  The sail is still and limp.  And as I sit, all alone in the beauty of the ocean, all alone with my thoughts, I feel sullen.  I feel shocked.  I feel reflective.  Because in the midst of my wondering mind that creates a picture of my aloneness out on the deep, blue waters, lies the constant thoughts of have I done enough?  Do I have enough faith?  Is my attitude in the right spot?  How will I react when I am called to my next hard place? And I wonder over earthly death and Heavenly life.

There are plenty of people writing about Kara Tippetts.  She was a beautiful Christ follower who left this hell on earth to finally meet her Jesus face to face yesterday.  She was a talented writer who got to the heart of the matter and spoke creatively in ways most of us cannot script with our own hand.  And while I never had the chance to know Kara on a personal level, I know her husband Jason.  I know he will always hold a special place in my heart.  I know on my wedding day, walking down the aisle to my dear husband, Jason stood next to him with a tender smile on his face.  I know I played hide-and-seek in dark graveyards with Jason and Amy and Steve when we were freshmen in high school.  I know of Jason’s contagious smile and being loved by everyone.  I know all our high school friends remember Jason’s white Mustang without working brakes as he used the parking brake to stop his car. I know miles and years do not separate old friends.  And I know today he is hurting.  How does one prepare for the death of your bride?  So today, my thoughts and prayers are focused on eternity, on faith, on Jason and their four precious young children with fresh tears and hurting hearts as they attempt to process the news of their mom no longer present in their home.

Today I have been reflective thinking on my own faith in Christ, and it feels inadequate to the breadth and depth of Kara’s.  No, I should not compare.  Yet it is hard not to look at the faith of one who walked the hard road and not wonder if I, too, possess that same breadth and depth of faith.  If I were to walk the same journey of metastatic cancer, would I also trust in my Heavenly Father with the same abandon as Kara?  I only know He called her to walk the hard road because the evidence is tangible and real of how many lives the Lord was able to touch because of Kara’s suffering.  And all I can do is hope and pray if the Lord asks me to walk the hard road, if He asks me to suffer, if He asks me to lay down all my hopes and dreams, if He asks me to journey the impossible path, that I will do it with abundant grace and faith.  Will I look beyond my own story to taste and see and touch the story of redemption?  Will I take the hand of mercy and walk the road of the living testimony?  I should hope so.  I should only hope my faith is so strong to graciously accept the devastation of unanswered dreams.

It is the dance, the twist in the story of life, as we are all called to trust that whatever comes next is already full of the grace to walk the journey faithfully.  And every one of us will see the hard.  We will walk the lonely road.  We will be challenged beyond what we can bear.  We will be tempted to resist the hand of provision and bargain for the path of ease and stability.  Yet our Lord calls us to walk by faith, not by sight.  He calls us to see joy in the midst of pain.  He calls us to trust when we are falling.  He calls us to share love when we want to walk away.  He calls us to give our gifts when we want to receive sympathy.  He calls us to keep moving when we want to quit.  He calls us to be His light when we want to hide in darkness.  He calls us to choose joy in the midst of terror and pain.

For years I have heard people say of me, you are so strong.  I could never do what you do.  You have such faith. You stay so positive.  But to believe those words is the impossible task.  I simply know a broken life longing for grace.  The Lord has blessed me with four beautiful souls to guide and direct toward Him.  He has given me a partner to walk this path with hand in hand.  He has allowed hardship over my youngest in the form of relentless seizures, severe developmental delays, silent words, complete dependence, physical degeneration and continued fading.  He has allowed tremendously hard days and weary tears.  He has not allowed me to turn from His care or take my eyes off His goodness. How could I turn from the source of my strength?  I see my story as a stumble through disappointment and tragedy splattered with grace and love.  I see my story as much forgiveness and little self-pity.  I see my story as a calling, not a choice.  I see my story as my personal, intricate, known hand print in this world.  I see my story as all my own.   It is a good story.  A story full of provision and blessing and laughter and sharing hearts.  And God has not called me to do any more than what His hand has dealt.  He has not called me to be a light where another’s name has been placed.  He has not called me to be anything but faithful.   And in the walk of faith, my duty is to accept the hard road with as much gratitude as I accept the easy blessing.  It is to forgive often and love much.  It is to seek truth and acknowledge goodness.  It is to keep my eyes on Jesus and move forward in confidence for my eternal home.

God does not call all of us to write a book or manage a blog or speak, but He asks all of us to be faithful in the call.  That call is uniquely written for each of us.  It is as unique as the fingerprints we carry.  For at the end of the day, at the end of the season, at the end of the journey, when we meet Jesus face to face, when we get to touch the assaulted hands and experience the holiness of Heaven, it is then and only then our journey will be complete.  It is then it will all makes sense.  It is then we will no longer care who had the best house, the best friends, the best job and the best life.  For our eyes will be set on eternity.  Our hearts will be full.  Our bodies will be healed.  Our faith will be redeemed.

In the waiting of Heaven, I am reminded of II Corinthians 4:18 which says, “So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”  Our eternal is coming.  For some it will be soon.  For some it will be years.  But it is coming for every one of us.  Let us fix our eyes on our Father who numbers our days and grants more grace than we deserve. Let us cling to the One who gives our strength.  Let us focus on living our moments for His glory.  Let us move with intention toward those who are desperate for Jesus.  Let us turn to our Anchor and hold fast to the One who directs our path in the manner only He knows is best.  Let us see beauty in another’s story.  Let us praise Him in all things.  Let us look with anticipation to the days ahead.  They are days we cannot know, but days we can trust to the Father’s hands.

We know that in everything God works for good with those who love him, who are called according to his purpose. ~ Romans 8:28

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Please join us in prayer for our sweet friend Jason and his children Ella, Harper, Lake & Story Jane.  Be blessed by Kara’s legacy of faith at http://www.mundanefaithfulness.com and buy her book The Hardest Peace.

Over three years ago, the Lord brought our family to First Free.  We had been attending a much smaller church where Travis was an elder, and we both volunteered in other roles.  Because of its small size, there were hardly any other teenagers in the church which meant there was not a ministry for the youth.  Brad had been attending First Free’s youth group with his best friend and as a result, we made the difficult decision to leave our beloved church to attend First Free where our kids would be spiritually fed – something that was very important to us as our kids are in the public school system.  It was a hard move for Travis and me as we loved our old church, but with time, we joined a small group, and we now absolutely cherish those Sunday afternoons with dear friends.  We have also become involved with Masterpiece Ministries which is our church’s ministry to special need children and adults.  I truly believe God led us to First Free because He knew we needed this ministry, and maybe, just maybe, this ministry needed us too.

Our experiences over the years trying to incorporate Ryan into a church setting had not gone well.  For years we attended a large church where Ryan simply did not fit in.  After he outgrew the nursery, there was not any place to put him because of his severe epilepsy and autism.  He could not handle the noise and commotion in the Sunday school classrooms.  The church found a buddy for Ryan, and they spent their time strolling the halls of the church in Ryan’s jogger stroller, but even that did not work many Sundays.  One of us often missed church to stay home with Ryan.  Devastation rolled over us like an impending storm when Travis discovered Ryan’s buddy had a disturbing criminal record.  By God’s grace we found a college girl who started coming over to our house to stay with Ryan every Sunday morning.  Our sweet Whitney became family, and we cherished her for nearly four years until the day she married and moved away.  After finding our beloved smaller church, we brought Ryan with us when we could, but even then, all he could do was sit in a small office as we prayed he would last throughout the service by falling asleep.  Coming to First Free was not only a needed blessing to our teenagers, but we discovered the church was more than eager to welcome Ryan as well.  It was not easy to leave him in a quiet, inviting room with adults we didn’t yet trust, but every week we kept at it until those adults became friends.  And then came our involvement with the adult special needs class; Travis teaches every Sunday.  There are no words to adequately describe my love and devotion for these men and women who love Jesus with an emotion words cannot explain.  The love and tenderness they have for each other and all our wonderful volunteers is contagious.  These beautiful souls show up every Sunday morning with eagerness to learn about God’s love.  They serve the church with bubbling anticipation and excitedly wait for the next social event and service project.  These children of God, with their various levels of developmental delays and ability to clearly speak, simply bless my heart and bring me to tears.  I have found it is not the participants of this class who are disabled; instead, it is those of us who cannot see their value who are truly disabled.

The Lord says in Psalm 139, “You made all the delicate, inner parts of my body and knit them together in my mother’s womb. Thank you for making me so wonderfully complex! It is amazing to think about. Your workmanship is marvelous—and how well I know it. You were there while I was being formed in utter seclusion! You saw me before I was born and scheduled each day of my life before I began to breathe. Every day was recorded in your book!”

Every one of us has value no matter our height or weight, the color of our skin, what we do every day to fill our time, how high of an IQ we have, or where we lay our head at night.  We are all wonderfully complex and perfectly knit together.  As I recall an unforgettable night in January 2005 when I clearly heard the Lord speak to me and say “He is as I intended him to be” while I cried big tears of loneliness and devastation over Ryan’s complex diagnoses, I am reminded we are all made in God’s image.  We are all as He intended us to be.  We are all here on a unique journey of suffering which varies greatly from that of our friend’s.  We are all called to glorify God in every circumstance.  And with that calling, we are all responsible to live out every day for the glory of God in whatever body and circumstance and path He grants us.  I once heard that for a Christian, this life on earth is the closest thing to hell we will ever experience.  And I believe the statement is true.  In our suffering, we have the responsibility to reach out to others and show them the love of Christ.  To show them His suffering as he died on the cross to bring us eternal life.

It is my honor to serve my friends in First Free’s Masterpiece Ministry.  It is my privilege to be a part of their lives as we cry and laugh and eat and play and study God’s Word together.  It is my heart’s desire to see this ministry grow and reach families who have not found a welcoming, loving, accepting church for their entire family.  Watch this beautiful video that so adequately describes our ministry.  Share it with families you know who need our friendship.  Be blessed by the love and devotion and excitement of those whom I call my dearest friends.

The video is available on Vimeo at this link:  https://vimeo.com/122021704

Several weeks ago Travis and I went to a hearing for medical cannabis at the Capital.  Before it started, he asked me to introduce him to another dad of a special needs boy and I told him “let’s wait until the hearing is over because it’s about to start”.  Sure enough, the hearing ended and the dad was not available as I had to hurry back to my office one block away.  And so, because of my selfishness to wait, the dads never met.  The crisp air wasn’t the only cold I felt that afternoon.  My husband’s mood was equally chilling, and when I inquired if he was mad at me, his response was “I don’t want to talk about it”.  Later that evening after the dishes were neatly stacked and the kids were settled doing homework or disappearing to the basement as kids do, we talked.  What I had failed to acknowledge before the hearing was what my husband didn’t say.  He didn’t say he feels lonely much of the time.  He didn’t say how hard it is to be home all day with someone who cannot talk.  He didn’t say how endlessly tiring it can be to spend two plus hours every morning preparing medications and tube feedings and a feeding pump and cecostomy cares and bathing and dressing and brushing teeth and settling back in bed before starting in on the bills and the laundry and the cleaning and the grocery store list.  He didn’t say how long the mornings get repeating this familiar routine day after day after day.  He didn’t say how much he longs for a friendship with someone who gets it, someone who walks a similar road of  tasks and mundane routine.  And in my failure to recognize everything my husband didn’t say, I robbed him of an opportunity to be heard and understood.

Because every day, every single day while I am at work interacting with other adults and stretching my mind and chatting with friends, my husband is home with a mute child who cannot share emotions and thoughts and laughter.  It’s an amazingly fulfilling, cherished role but in the same breath, equally lonely and isolating.  Because he is the one who is on constant alert for pain and discomfort which are only found in a known facial expression or body position.  He is the one who lifts the heaviness of a 100 pound body that cannot even put a sock on cold toes or climb into the car.  He is the one who calls the home health supply lady when, after putting away 6 or 8 huge boxes of supplies, notices one of the numerous different items we use every day is missing or in short supply.  He is the one who packs the bag for swim therapy then stoops over in the hot, wet changing room to put on the swim diaper then repeats the process after pool therapy is over to dry and dress and places legs into braces and get the boy back to school to his para.  He is the one who calls the dentist and the doctors and the school and the pharmacy and the therapists making appointments, changing appointments, dealing with billing issues, getting prescriptions straightened out and handling every other detail that arises because of the numerous medical issues.  He is the one who consoles the angry, crying, sick child who can’t tell anyone what is wrong.  He is the one who changes sheets, folds and puts away loads of laundry for the boy who doesn’t know what sweatpants are.  He is the one who sits in the sterile, quiet hospital room when sickness overtakes the boy, waiting for the next doctor to come in and give their summary and opinion of events and the next treatment while I have to go to work because all my sick days have already been used up from previous hospitalizations and surgeries.  He is the one who wipes drool falling from the sweet chin, changes diaper after diaper, watches for tripping hazards.  He is the one who turns on cartoons when the little one sits patiently on the couch staring at the black, quiet TV and knows exactly what time Peppa Pig and Umi Zoomi will be on.

The blessing is being able to be home to care for the quiet little boy in our home and receiving the quiet love beaming from big green eyes that say “I get it, daddy.  I know how hard you work to take care of me.  I love you so very much too”.  With the blessing comes the hard, lonely, deafening quiet days that no one understands.  But those eyes, they tell such stories.  That sweet little mouth with crooked teeth turns up into a big, generous smile of understanding for the daddy who does it all.  And some day, some bright, beautiful perfect day somewhere in his future, the little boy who can do so little will stand next to Jesus and brag about the daddy He sent to care for the broken boy who simply needed a big loving heart to take care of him.  Some day the little boy will tell his daddy with a new, strong voice, “You did good, daddy, and I noticed.  I heard every loving word you sang to me.  I felt every gentle touch and noticed those strong arms that lifted me in and out of the bath.  I heard all those conversations of you managing my complex needs and constant appointments.  I saw the heartache, the loneliness, the pain of my brokenness in your eyes.”  Not many children, especially those with special needs, have the privilege of having a daddy home with them all day.  But my little boy, he is blessed to know the hard work and dedication of a father who loves deeply.  It may be a lonely road most days, but a cherished path without regret it is.

I have been absent lately, and it’s definitely because there isn’t any real news to speak of.  And what a blessing that is!  It means things are smooth sailing at the McClintick’s which we are so very grateful for.  The kids are doing well and are finally inching closer to summer break.  Brad still has golf tryouts in the next couple weeks which he is really looking forward to. Sidney is in the midst of volleyball and just finished a three day tournament this afternoon; she is completely exhausted and bruised up.  Trevor is doing his thing and looking forward to signing up for his freshman year classes soon.  I still can’t believe I will have three in high school next year!  And Ryan is good – healthy, happy and pain free.  What more could we ask for?!

Travis and I have been blessed beyond measure by our church to be able to attend the Global Access conference in California this week.  We fly out in the morning with our dear friend Danelle and will spend the next few days learning, growing and talking about special needs ministry.  I’ve said before we teach the adult special needs Sunday school class at our church, First Free, and absolutely love it!  I think we are more blessed each week than our “students” are.  It’s a blast!  I’m certain we will learn a lot and come home with some new ideas and a fresh perspective.  Please pray our time will be well spent and that we will have open hearts and minds.

This trip is really only possible because of the love and dedication of our children.  When Danelle told us the church wanted to send us to this conference, I cried big, wet tears because I didn’t see how it would be possible to leave Ryan – and because we were so humbled by the generosity of our church.  Taylor, who does respite for us, works full time, my dad and step mom are out of town this week, my in laws and my sister work full time and there simply isn’t anyone except Taylor who can do all of Ryan’s cares.  No one except our kids that is.  With tears streaming down her face, Sidney sat at the kitchen table and said to me, “mom, God is providing this awesome opportunity for you so you have to go”.  She volunteered to stay home from school all week to care for her brother; then Brad piped in and said he’d stay home too.  At first I was totally against them staying home from school so we could go to a conference, but when it really came down to it, there simply isn’t anyone I trust to take care of Ryan like I trust Brad, Sidney and Trevor.  And so it’s all worked out – Brad will stay home two days and Sidney will stay home two days.  It still blows me away to think that my own children are so selfless that they are willing to take on all of Ryan’s cares.  It really is a lot of work. Trevor is just as attentive as the older two but he simply can’t stand to do Ryan’s tube feedings.  It’s not his thing, and we respect that.  He is a doting, attentive, loving big brother and watches Ryan a lot as long as he doesn’t have to do meds and tube stuff.  And that’s OK. Our sweet Taylor will be here while we are away so the kids have an adult with them, and she is so great with Ryan.  They will all be in good hands, and they love Taylor! Our church got wind that our children are taking care of Ryan and gave them two gift cards to eat out.  How sweet is that?! They are a wonderfully loving group of people who know how to make a family feel loved. We are so very blessed!

Please pray for our children while we are away, and pray for health and safety for us as we travel.  As we pray every night, ask the Lord to keep his angels around the doors and windows of our home.  I know our children will be perfectly kept by the best Protector possible.  I simply can’t wait to soak in a little California sunshine and get my toes wet in the ocean! This is the FIRST time we have ever been away from Ryan for any period of time except for a volleyball tournament last year.  I know the kids will all do great, but it’s still hard to leave Ryan.  Tomorrow will be a great day.  And so with the tomorrows to follow.  God’s got every tomorrow, so I’m going to choose to rest in His perfect care.

Sometimes I look at my life and wonder how I got to where I am. My life is full of accomplishments, regrets, cherished loved ones come and gone, missed opportunities, beautiful memories and stark realities of life’s unfair nature. And I look back with thanksgiving, regret, wonder and awe, sadness, joy and the realization of God’s covering every step of the way. But still, my life has not turned out at all how I imagined. And some of those dreams from my young years, those hopes of my early wedding days, those lofty plans drenched in unrealistic expectations – they’ve all shaped me. Some have come to fruition, many have not. Yet as the sunrises and sunsets come and go, ever faithful to appear day after day, I’ve come to know a love unspoken. A faithful love transcending emotions and situations and unspoken dreams. I remember Jeremiah 29:11 ~ For I know the plans I have for you, declares the Lord. Plans to prosper you and not to harm you; plans to give you hope and a future. Notice he didn’t say for I know the plans you have for yourself. No, he said he knows HIS plans for my life.

I easily fall into the rebellious thoughts of saying “this is not how my life was supposed to turn out!”. Not that my life is bad because it’s not. I have many blessings which do not go unnoticed. I have been treasured, I have been loved, I have been sought. And I’m grateful. So very grateful. But the circumstances that define my life are not as I hoped and dreamed oh so many seasons ago. My life has not turned out at all as I wanted. But who am I to turn from the open hand of blessing. Who am I to despair at the journey’s climb when I planned for the open road of ease and leisure. Who am I to question the opportunity offered when my own dreams ran dry. Who am I to turn from difficulty and pain while declaring my trust in the Father of time. Ecclesiastes 3:1 says it straight on ~ For everything there is a season, a time for every activity under heaven.

If I have learned anything in my moments here, in my time of reflection over days gone by, it’s simply this. My life is not my own to plan, prepare for, scheme and dream and worry over. My life as a follower of Jesus Christ is to do this one thing and this one thing only – to glorify God in every occasion. Every single one. So when diagnoses come, when circumstances seem unbearable, when my child walks in rebellion, when disappointment overwhelms, when the money doesn’t come through, when a friend disappoints again, when my spouse doesn’t live up to my expectations, when God feels so very far away, when my mind tells me I can’t, it’s then and only then the Lord is able to fill my cup. My brokenness is the vessel of God’s provision. It’s in my weakness He is strong. It’s in my giving up He pours out strength. The way is not always clear but His faithfulness is the light in the darkness. I love this song by Hillsong:

You call me out upon the waters
The great unknown where feet may fail
And there I find You in the mystery
In oceans deep
My faith will stand

And I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine

Your grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You’ve never failed and You won’t start now

So I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine

Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior

I simply love the part in bold that speaks of trust without borders, let me walk upon the water wherever YOU call me. What faith. What love for a Savior. What devotion and monovision it takes to have that level of trust. And it’s what I strive for. What my future depends on. I have dreams. Dreams the Lord placed on my heart. Dreams I plead with the Lord to bring to fruition. Not to bring me gain, but to serve the One who gave me my every breath.

So while my past looks like quite the mixed bag of regret and blessing, while it’s full of love and thoughts of “if only”, it’s overflowing with the faithfulness of the Lord. No my life has not turned out at all as I expected or dreamed. In those moments of sorrow over all the things that never came to be, I am fully aware that without the struggles, without the crushed dreams and missed opportunities, without the regretful decisions, without the detours and people coming and going from my life, I would not be prepared for whatever is ahead. If everything happens for a reason, if I truly believe my Heavenly Father is in control of my hours and days, then my only choice is to believe. Believe in His goodness. Believe in His plan. Believe He loves me enough to provide. Believe good things are coming. Believe the dreams brewing in my soul placed by an Almighty God will become a reality. He’s a good God. There’s simply no way around it. I can’t look back and not believe every moment has come to pass for a specific reason. I treasure today.  Because my todays are good.  They are treasured.  They are beautiful and blessed.  I love my todays. And I look with anticipation to all that is coming in my tomorrows.

I pray you know the same love of a Savior who provides. Who is trustworthy. Who loves surprises and blessings. Who comforts and consoles. Who provides and prepares the way. Whatever you are facing today, don’t forget His faithfulness. Don’t step away from His protection. His love is enough. It’s simply enough.

Happy 2015! I haven’t updated for over three weeks which is always a good sign. Things are going well here, and I can hardly believe it is already the middle of January. I’m not sure where the past two weeks have gone, but I’m happy to say every passing day brings us one sunrise closer to spring! I’m already over winter, and we’ve hardly even had any snow! So the holidays….Christmas was full of traditions we love. We hardly seem to vary from our usual fondue on Christmas Eve, Christmas morning routine and New Year’s Eve at the farm. This year was no different, and we enjoyed some wonderful moments with people we love. We are so very blessed to be surrounded by such a loving, fun group of people we call family.

Christmas break was full of the typical sleeping in, shopping for last minute gifts then spending Christmas money, time with friends, more sleeping in, celebrating another year of Travis’s life and lots and lots of popcorn! We bought the kids a big popcorn maker like the movie kind which they love so there has been a lot of popping going on in the basement with friends. Ryan had a wonderful break too sleeping in and playing with his toys. He especially loves (and I do mean LOVES) to open and close the pantry door over and over and over again. It bring a smile to everyone’s face especially when we get to watch him spill his giggles while he does it. I’m not sure why the repetition brings such delight to his heart. The louder, more annoying sound coming from the kitchen is the slamming of one particular cupboard door under the kitchen sink. He slams it just as hard as he possibly can and if we don’t stop him, he will do it for what feels like hours which produces a lovely headache. There has been lots of redirecting lately, but we are happy to do it as these are signs of a happy, healthy boy. And that’s about as mischievous as he gets these days!

The Lord has absolutely blessed us with stability in Ryan’s health and the feeding pump is going well. Every now and again we get into a bind with lots of beeping and readjusting, but in the end it usually just takes a simple, small flush of his j tube and everything is working smoothly again. It seems his tube gets kinked but it’s easy to fix. He isn’t eating much at all by mouth anymore – maybe once every 10 days, but when he does eat, he can tolerate about 1 cup of food. It’ been three years now since he stopped drinking fluids which is still baffling to me. But in the big scheme of life, it really doesn’t matter. Travis did take him to the dentist last week and also to the neurologist to have his VNS turned up again. The settings were at 60 seconds on and 60 seconds off before the battery died, so when we had it replaced in August we had to start all over turning the settings up. Right now he is at 30 seconds on and five minutes off so we have a long way to go to get him back to his previous settings. I guess it’s helping but there is really no what to tell how many seizures the VNS stops when he always seizes so much regardless of any treatment or medication we try.

Trevor is happy and adjusted and content as usual. He’s definitely our quiet low key child and is often with friends or in the basement. This week the school district starts looking at applications for Zoo School which is the science focus program here in Lincoln, and he is really hoping he gets accepted. Only 25 kids make it into the program every year, but he applied early and has excellent grades and lots of volunteer experience. Plus he’s already in the gifted program so hopefully that’s enough with the essay he wrote which blew us all away. This kid can write!

Sidney started club volleyball a few weeks ago, and her team is really getting off to a bad start. One girl is out with a shoulder injury, another was just diagnosed with mono and a third broke her ankle at the tournament this past weekend. Two of the girls were the setters so now they don’t have anyone in that spot. It might be a tough few weeks for the team until they figure things out. But she plays her heart out and does a fabulous job. School is going well, and she really loves high school.

And Brad has been his typical laid back self. He never complains about anything almost to a fault, but I really appreciate his humble spirit. His car’s air conditioning died at the beginning of last summer, then the motors for three of the windows died, every once in a while it won’t start for whatever reason, and now the heat went out so his car is extremely cold, and the kids have a very uncomfortable drive to school. He has not complained once; no exaggerating! He’s just so grateful to have his own transportation. We are not in a position to buy another car right now, but thankfully all three kids have had a great attitude and simply appreciate what the Lord has given them to ride to and from school every day in. I hope we can all find the humor in this situation some day! Golf will be starting shortly which will keep him busy, and he’s also in three AP classes so he has a lot of homework too. Time management will be very important in the next few months!

I hope you all are doing well and staying warm! It sure has been cold lately, but that’s old man winter for you. I love the changing seasons but would be perfectly happy if winter only lasted for just over one month from Thanksgiving to the week after New Years. I guess the cold makes us all appreciate the beauty of spring when it finally arrives.

Psalm 86:11 ~ Teach me your ways, Lord, that I may rely on your faithfulness. Give me an undivided heart that I may fear your name.

I simply love this verse and have been praying for an undivided heart for some time now. How easy it is to fall into the pattern of giving the Lord only pieces of our souls and keeping bits of it for our own ambitions and musings and dreams. A friend at work and I are doing a Bible study together twice a week studying Slave by John MacArthur which I have to say is a great book! It goes right along with this verse and talks about having a heart for Christ our master’s will and plan instead of our own. It’s challenging but exciting to press on toward that goal – an undivided heart.

Many blessings and much love to you all!

I love this picture of my mom and Santa Clause many years ago.  It sits in my family room and makes my heart melt every time I see it as it has become one of my very favorite decorations to put in my home every year.

Sharing a few random picutes of the kids – Brad and Sidney being silly while Christmas shopping, Sidney studying/watching TV while her brother sleeps on top of her, and Trevor and Ryan hanging out by the tree.

Sometimes we forget Christmas isn’t always merry for those around us.  On our own preparations, baking, shopping and wrapping it’s easy to forget the heart wrenching emotions of those around us.  I can think of some around me right now including the unexpected death of a mom last year on Christmas Day and facing the holiday without her for the first time; trudging through the awful effects of chemo; fresh opened wounds of not being with loved ones, often not far away by miles, but instead separated by disagreements, difficult interactions, bitterness and poor choices; struggling financially and not being able to fly or drive to spend time with family; not being able to buy Christmas present; walking through fear and worry, begging a depressed son not to commit suicide but waking every day praying it won’t be his last; feelings of isolation and rejection limiting joy and the ability to enjoy the holiday; being a single person with no spouse or children to spend the day with while family is miles away; having to face family who is critical, demeaning and not so fun to be around.  Even the news abounds with stories of unnecessary death, tragic accidents and injustice especially this when we see the stories of police officers shot for the color of their skin as the country reels in anger and accusations of discrimination.  Let’s face it folks, this is a messed up, ungodly world we live in.

Yet it’s far too easy, much too safe to simply turn a blind eye and pretend we don’t see it.  We so quickly turn from those around us who are facing some really heart wrenching issues in a season that tells us to gather with family.  We so often get so caught up in the buying and wrapping, in the decorations and planning and baking that we forget about those whose days aren’t so merry and bright.  Let’s all challenge ourselves to extend the olive branch, gather with some who have no one to share a Christmas meal with, buy gifts for someone who lost a job, pray for the mending of relationships and hearts.  This world thrives on chaos, unfairness, pointing the finger, not taking responsibility for words and action, pretending we don’t see the brokenness around us, waiting for and expecting someone else to lend the helping hand.  Yet the Bible clearly tells us in Matthew 25:40, “Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.” We are all capable of reaching out to one in need.  Maybe it’s an invitation to come for Christmas dinner or meeting for coffee to let someone spill their heart or sharing an hour to pray for the other’s needs and upcoming family stress or writing a check to someone who can’t afford to pay their next bill let alone buy presents.  Whatever the Lord lays on your heart, and He will if you simply open yourself to be led and directed, let’s all be challenged to make someone else’s Christmas a little merry.  God loves a cheerful giver, and in this season of celebrating our Savior and the eternal life He came to give us all, let’s give a bit of His love away through our words and actions. This world is painful, but this quote on my in-law’s fridge says it best:

Merry Christmas, dear loved ones! May you all remember why we celebrate – because Christ came to give us eternal life.

Philippians 2:8-10 And being found in human form, he humbled himself by becoming obedient to the point of death, even death on a cross. Therefore God has highly exalted him and bestowed on him the name that is above every name, so that at the name of Jesus every knee should bow, in heaven and on earth and under the earth.

Romans 6:23 For the wages of sin is death, but the free gift of God is eternal life in Christ Jesus our Lord.

Romans 15:13 May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope. 

Ryan went back to school today and his paras said he was energetic and happy.  Travis spent some time teaching his paras how to handle his feeding pump and what to do if it kinks and beeps.  He seems more tired than usual this evening but that is expected heading back to school after missing the last three weeks.  His cecostomy is infected again so he is on antibiotics, but this time we didn’t put him on anything that will bring on c diff.  He’s also gained almost seven pounds since his last hospitalization which is great!  After losing 17 pounds in the last few months, he definitely needs to gain some of it back.  And his nutrition is up to par now with the feeding pump so we are happy he is doing well.

Below are two of the ten part multi-genre project Brad had to do for his AP language composition class; his subject was Ryan.  I am posting my favorite two pieces because the first one is great advice for everyone and the second, well you’ll see….it melted my heart.  There is a reason God gave Ryan to us and a huge part of it is definitely the impact he has on his siblings.  That impact will affect others in years to come as our older kids grow and make a life of their own. I’m so proud of each of them for their maturity and compassion for others.  Kudos to you Brad, for making my day with your homework assignment!

Advice Column

I’ve encountered many people in my life with a mental disability; one of those people being my little brother. He doesn’t really have a physical disability, but his severe epilepsy and  autistic characteristics have made it so his body, such as muscles and joints, are not as strong as the normal 11 year old who gets a lot of physical activity. But anyway, this is besides the point. I’m sure most of you have seen or had some sort of experience with someone with a mental disability. But, some of you may not have or may be uncomfortable with being with someone like this. So, I am here to give you a little advice on how to treat a person with a mental disability.

First of all, you need to realize that though a person is disabled, they are still a human.  They are not to be referred to as “weirdos” or anything like that. The worst thing you could possibly do is to say they are, or look, “stupid” or “retarded”, which may have been a previously accepted word a long time ago, but now is definitely not a good word to call someone with a mental disability. This may seem like a “duh” kind of thing to some of you, but you’d be surprised.

Another thing not to do is stare at someone with an obvious mental disability. I can tell you from experience that when my little brother, Ryan, squeals or yells in a public place, and people stare for a long time or look at him constantly, it feels like they are disrespecting him and acting as if he’s a nuisance. With little kids though it is a different situation because they don’t quite understand yet, so don’t get that mixed up. Anyway, it just isn’t a good feeling when this happens to Ryan, even though he doesn’t understand.

Lastly, and most importantly, when you are with someone with a mental disability, be nice to them and associate with them! You will find that people with mental disabilities are some of the kindest and happiest people you will ever meet. There is a group of adults at my church in a group called “Masterpiece” who all have some sort of disability (though the majority of them actually have Downs syndrome). I have hung out with them many times before, and they are some of the most fun people to hang out with. With people like Ryan, it may be a little different because they don’t understand, but trust me, once you are around these people you will understand. It is important to show love and kindness towards these people, because they are who they are supposed to be. They were made that way.

All of this could probably be the same for a person with a physical disability just depending on what it is, but I am just speaking from the perspective I have the most experience with. But just remember, treat mentally disabled people with kindness. They are human beings like us, just with little quirks that make them who they are. Through being around my brother and the Masterpiece group at my church, and even some of the kids at school, I’ve learned a lot about kindness, love, and acceptance. I truly hope that you all someday will have an awesome experience with someone with a mental disability that changes your life for the good.

_________________

Thank You

Ryan,

Though you won’t be able to understand anything about this letter or what it is, I still feel like I should write it to you. So, what I really want to say is thank you. Thank you for cheering me up with your sweet little smile when I’m not feeling up to par. Thank you for always being there to hang out with me and watch Spongebob on the couch. Thank you for laughing all the time and bringing even more laughter in the family. You are such a bundle of joy and light on everyone you come in contact in. Your constant toughness and endurance through all the surgeries and hospitalizations and doctors appointments shows that someone is definitely watching over you. I can’t fathom going through what you go through.

It’s hard for us and your friends to watch you go through what you do, but you know, you always seem to come out on top. God is definitely watching over you in those trials little bro. But, I think one of the most important things you’ve taught me is to accept. Accepting meaning that even though someone is different, or quite possibly disabled like you, we need to show them love. You can’t even speak little bro, and you still spread more love than any given three people I know combined! I now LOVE meeting and hanging out with people with disabilities because of you! This is why I thank you. If you weren’t the way you are, I’m sure I, along with a cluster of other friends and family, wouldn’t be the same. I love you bro, and I hope you realize that, because I sure know you love me.

Sincerely,

your big bro, Brad

Ryan has been awnry which means he is probably feeling better. The doctor came by this morning and said Ryan can come home this afternoon so Travis will be bringing him home in a few hours. He is coming home with a feeding pump he will have to be attached to 20 hours every day and he is tolerating the dose the doctors want him to be on for good nutrition. As much of a pain as it has been to have been hospitalized so much in the last 2 weeks, I’m very thankful we are getting this issue taken care of so his quality of life is better with the ability to feed him into his his small intestines and keep him home with us and healthy! Hopefully Ryan will adjust to carrying the pump around on his back; he really doesn’t have a choice.

A huge thank you to those who have and will be bringing us meals as I cannot tell you how much it means to not worry about having to cook when we are already so stressed out and have a million other things to do.

The GI doc who did surgery said Ryan can go home tonight or Tuesday. Then the hospitalist came by and said he has to stay til Thursday. So….Ryan isn’t coming home yet. I’m kind of glad they are being conservative and keeping him longer to make sure everything is working well.  I have a feeling they are more worried about him than they are letting on. He has lost a terrible amount of weight and is very weak.  Plus with his cecostomy and the permanent loss of his large intestine working as it should, he’s got some issues.

Travis is there now and I will go up for the evening on Tuesday with the kids so we can all be together. Then Wednesday we will trade places and I’ll stay until he is discharged Thursday. It’s like performing a complicated dance trying to figure out who needs to be where and when. But we are pros by now.

The kids and I are going to decorate for Christmas tonight which they love to do.  Please keep us in your prayers as we all muddle through the next few days.  Love to you all!

Ryan had surgery this morning to change his G button (feeding tube into the stomach) to a G/J which means we can feed him into his stomach or into his jejunum (small intestine).  The surgery took longer than expected because the tube kept coiling; in fact it took the surgeon six tries to get it in place.  She said it may not stay in the small intestine and could end up back in his stomach but the only way we will know is if he starts throwing up again.  Please pray it stays in place or we will face another surgery!  Three surgeries and four hospitalizations in the past five months is plenty for all of us, and we’d like a break.

I am working today which was not fun as I came to work and my son was in surgery.  It was harder than I expected, but thankfully Ryan is resting comfortably and Travis is taking great care of him.  It’s a very hard balance trying to decide when to work and when to take off.  I don’t have an unlimited number of sick hours so I have to be very careful how much time I take off for Ryan’s illnesses always wondering if something may be lurking around the next bend.  My heart is so torn wanting to be at the hospital but I have to be at work. This is exactly why Travis stays home with Ryan during the day – so when he is hospitalized or has to stay home from school, someone is always available to be with him.

Ryan’s feeding pump will be hooked up soon so we can get some nutrition back into him.  We have done this before and while it’s not fun to deal with the pump beeping all the time because the tubing gets kinked so easily, it gives Ryan the nutrition he needs.  I can’t remember if I said this in an earlier post, but to give you an idea of how much he has been struggling with digestion, he weighed 100 pounds just a few months ago.  Last weekend when he was hospitalized, he weighed 89 lbs on admission.  Then just seven days later when we took him back Saturday, he weighed only 83 lbs.  We did everything possible to keep him hydrated and fed but it still wasn’t enough.  His liver enzymes among others were elevated on admission but after 24 hrs of fluids, they went back down to normal.  I have no idea how long he will be on 24 hr a day feeds, but we will do it as long as necessary.  And we may end up keeping him on the night time feedings long term just to make sure he gets the nutrition he badly needs. With his large intestine already having lost all its peristalsis, I’m nervous as to whether or not his stomach will work again.  It’s a guessing game and we have learned to be very flexible with things.

I am so ready for a break.  The last few weeks have just been crazy – not bad, but very busy – and I feel like I haven’t had even a minute to just stop and breathe.  I’m feeling fried and hope things settle down with this new normal.  We’ve done the feeding pump before and while it’s not fun, it’s something we know we can do.  Once again, we are finding a new normal. The kids missed out on our tradition of putting all the Christmas decorations up the Sunday after Thanksgiving and we didn’t get to go buy our very first real tree.  I know they are disappointed, and I hate that they have been so worried for their brother.  Hopefully things will settle down once we get Ryan home tomorrow. Hopefully Tuesday we can decorate the tree, listen to Christmas music, make a good meal and have some much needed family time together.

Thanks again for all the prayers.  We appreciate you all!  I hope each of you had a wonderful holiday; in spite of the stress we certainly did with lots of family in our home.

Ryan had a good day today and had a lot more energy than I anticipated. He is well hydrated, and his labs are now all back in the normal range. We did not see the GI doctor today, but the hospitalist spoke with her and she has agreed to do surgery so we can bypass the stomach and feed Ryan directly into his small intestine. Surgery is scheduled for tomorrow morning at 7 a.m. and I expect we will not go home until Tuesday. Both sets of grandparents were up today and we all had a nice visit together. Sidney and Trevor have been here all afternoon and evening and all three of us are ready to get home and get some sleep. Travis will be staying with Ryan and we have had wonderful nurses so I know they will be in good hands tonight. Thank you once again for all of your prayers and as usual, I will keep you updated as I know more tomorrow. The surgery should be quick and easy as he has been through it before so I don’t expect any bumps in the road.

Well we missed Children’s Hospital so much we just had to come back! Yesterday was our last day with Brady and CeCe in town before they headed back to Idaho today, and Ryan had a very rough day. He threw up, was gagging, and was not digesting anything we put in his stomach even in small amounts. Last night he threw his meds and at that point we absolutely knew we had to come back for an inpatient stay. So this morning Travis, Ryan and I got up and headed to Omaha. We are now settled in a room and tomorrow the GI doctor will come up to determine what the next step will be. All the other doctors agree that surgery to insert a G/J tube is our best bet. If we could feed him in his small intestine and bypass the stomach, we would be able to stay home and avoid dehydration and lengthy hospitalizations. We have done this before long term and while it’s a pain to deal with beeping pumps in the middle of the night, it’s much better than the alternative we are doing right now. Travis and I are seriously thinking about buying a king size bed and having Ryan sleep in our room with us. That would help us to get more sleep because we wouldn’t be in and out of bed every time his pump beeps. One step at a time, and right now we just have to get him healthy. Last week when we were admitted, Ryan weighed 89 pounds which was down from 100 pounds several months ago. And today, only one week later, he is down to 83 pounds. He obviously is not doing well in spite of us having fed him every 2 hours for the entire week. While it’s boring sitting in a hospital all day, I am thankful we have access to an amazing children’s hospital only one hour from home, and three older kids who are independent and reliable.

We appreciate your prayers, and I will update tomorrow after we talk to the GI doctor and have a plan in place. Love to you all!

Unfortunately Ryan’s tummy troubles are continuing and he is not digesting his formula. He threw up earlier today and later we had to empty his tummy because nothing was digesting and he started gagging. He is still very weak and cannot walk without help. Travis and I will be taking him back up to Children’s in the morning to be hospitalized again.

I am hoping they will put a G/J tube in so we can bypass his stomach and feed him at home with the feeding pump straight into his small intestine. While it isn’t ideal, we have gone this before and can avoid continued hospitalizations. I am not certain they will let him go to the OR when he has C Diff even though he’s been on antibiotics for a week. Do any of my nurse friends know?

We are very stressed as you can imagine.  Please pray for our family; your prayers mean so very much. I will update tomorrow after we are settled.

Happy Thanksgiving to all my sweet friends and loved ones!  My heart is blessed, my house will soon be full, my tummy will be satisfied and my mind is at peace.  Today is a good day because God is gracious.  As I set up tables, cleaned bathrooms, prepared food and fed donuts to the kids, my mind has gone to a place of relishing the grace of God.  I am the first to admit these past few weeks have been difficult.  My heart has been torn between joy in the every day events of life – watching my kids succeed, grow and be silly, time with my husband, enjoying my extended family, chats with dear friends, thankfulness for a job I love, having a warm home to rest and relax in – and stress watching the struggles of my baby as he fights infection and a slowing body.  There are no words to describe the ache and sorrow that dance in my heart.  There are no actions to remove the incredible weakness in his body.  There are no promises of things getting easier for my little boy.  But this morning, this beautiful sun-filled morning, I was blessed with the gentle reminder of God’s amazing grace.  Grace when I have screwed up again with a harsh word much too quickly spoken, grace when my mind wants to speak ugly to mask the sorrow invading my soul, grace when I treat those I love with too much ugliness and not enough kindness.  It’s in my own weakness and self condemnation that I remember grace.  And on this day of thankfulness, I am especially grateful for the grace of God to grant forgiveness to a pitiful life not deserving of the love I receive.  Today I get to love on my family. I get to serve them with food and a comfortable, welcoming home.  I get to enjoy laughter and sharing.  I get to be filled with goodness and gentle reminders that in my own imperfection and much-too-hard-on-myself spirit, I am still loved, still appreciated, still wanted and still cherished.  I am so undeserving of the grace offered to me by those whom I love, but more importantly, I am so completely undeserving of the grace offered to me at the cross.  Because without that cross, without that terrible death and beautiful resurrection, I would not have the hope of eternity.  I would not have the peace of knowing in Ryan’s struggles, in the all of our struggles really, God’s perfect plan is in place.  How quickly I forget about eternity.   So today, in the eating and fun, in the laughter and playfulness, my heart is so full.  So very full of humility all because of a Father who loves
me enough to send His Son to save me.  Oh the retched soul I am; He came just for me.  Undeserving me.  And He came for you.  Be blessed my sweet, cherished friends.  May you, too, relish the grace each of us does not deserve.  And may we all extend that grace to each other.  We all walk a hard road.  But today, let’s focus on the good.  Let’s allow thanksgiving to flow out of our hearts and into those who surround us.

Ryan kept his formula and meds down today so we got to escape and come home.  He was so cute as we rounded the corner onto our street, I asked him if he wanted to take a bath.  He squealed and when we got in the house, he b-lined for the bathroom then proceeded to enjoy every last drop of hot water in the house.  He is tired but content this evening.  I’m sure he will sleep well and will sleep the day away tomorrow.  Unfortunately the hiccups have gotten ahold of him again and I will have to give him some Ativan to try to stop them.  This happened last night too and he hiccupped for hours on end.

No one ever decided why his stomach decided to stop digesting and emptying and that is usually not associated with a C Diff infection, but it is common with illness.  Honestly, it doesn’t matter.  I was very disappointed to find out he has C Diff but he has been on two antibiotics in the past two weeks trying to get rid of his cecostomy stoma infection.  And being on antibiotics can cause C Diff because he was on a broad spectrum drug that removed the good bacteria in his large intestine as well as the bad.  This can be a very difficult infection to get rid of unfortunately and we are praying Ryan’s body can fight it off quickly.  It’s also extremely contagious but with him not being able to stool without his flush, he is not really infectious except when we are changing his diaper because it’s transmitted by contact.  And we will be using gloves and taking every precaution to make sure we clean up well and do not spread the bacteria.  Hand washing is vital and I’ve already preached at the kids about washing their hands repeatedly to be on the safe side.

I’m just thankful to be home and especially glad Ryan’s stomach started working again.  All I could think about was the month long hospitalization we had two years ago when he ended up on TPN and came home on a feeding pump 24/7.  That wasn’t fun at all and I’m glad we aren’t repeating that experience.

Again, thank you for your thoughts and prayers.  We appreciate you all so much as you have been faithful to carry us through these difficult moments.  You are loved!

Ryan was diagnosed with C Diff today which is a real bummer.  It’s a highly contagious infection in the GI tract causing very smelly diarrhea, cramps, sometimes fever, weight loss, decreased appetite.  It’s not a diagnosis I expected even though he’s been on antibiotics for a cecostomy infection.  And it can be very difficult to treat.  It’s often found in nursing homes where it’s easy to transmit because people share bathrooms, don’t wash their hands, etc because it’s very easily transmitted from person to person.  You also see it in hospitals a lot too where people often catch it, and I dealt with it a lot when I worked on the floor.

Yesterday Sidney, Ryan and I got to his room around 3:30 after only two hours in the ER.  He was pretty miserable but was able to get some much needed sleep.  Sidney and I didn’t sleep much at all last night because the nurse kept coming in to hang IV meds.  We were able to switch three of his seizure meds over to IV but they also gave him Zofran and Ativan so there were five IV meds to hang and they all had to be done separately.  So by the time they were all infused, it was almost 1 am and we hadn’t really slept.  Then in the middle of the night the nurse was back in a couple times for a beeping pump and to change his IV fluids.  Then before we knew it, shift change came and there was no going back to sleep.  So Sidney and I will be going to bed very early tonight.  She has officially been introduced to the fun of being hospitalized.  It’s much different to endure all the interruptions during the night than to just come visit for an hour or two.

Ryan was pretty cranky this morning and growled at everyone who came close to him (except for Sidney and me).  He was feeling poorly which is so frustrating because he can’t tell us what’s bothering him.  He did keep two oral meds down with a very small amount of water but we’re talking 1-2 ounces which isn’t enough to get him home and back on his formula boluses.  Travis came up around 11 a.m. and is spending the night.  Before we knew he is positive for C Diff, one of the doctors said maybe he can go home tomorrow if he keeps his feeding down but I’ll be surprised now if that happens. I think they are doing 3 oz Pedialyte through a feeding pump for an hour then giving him an hour to rest then repeating.  So tomorrow I will go to work, get off an hour or two early, drive up to Omaha and Travis will leave to come back down for work.  Then Tuesday he will come up early so I can leave the hospital and go to work again.  If Ryan stays another night, I will have to leave early again Tuesday and drive up to Omaha so Travis can come back to Lincoln to work again.  It’s not ideal, but we can’t take off work ever time something happens with Ryan.  I worry I won’t have any time left if something more serious happens down the road.  It’s very stressful, but our little guy needs us and so we’ll do what we have to do until we can bring him home.

A very big thank you to Kim for the food today.  I can’t tell you what a blessing it was to have the kids fed after church and have dinner for tomorrow night when neither Travis or I will probably be home. You are truly the most generous person I have ever met and it is a privilege to count you as a friend!

Please pray with us for Ryan’s body to heal quickly from this C Diff and for his stomach to digest and empty as it should.  This infection has the potential to be a really difficult thing to treat and the thought just makes me sick.  I know he’s in God’s hands and there is no better place to be.  We appreciate your prayers so very much.

Ryan has been having episodes of vomiting on and off throughout the week with diarrhea. I know the stomach flu is going around at his school so maybe that’s what he got. Regardless, he has not been on top of his game this week and on Friday he was gagging quite a bit too. Then on Saturday he threw up all of his meds, formula and water after it sat in his stomach for over two and a half hours. At that point I knew we had to make a decision to hospitalized him. So here we are sitting in the hospital once again with gastroparesis. In Ryan’s usual fashion his tummy is not emptying so we are here at children getting IV fluids and allowing his stomach to rest. Because he is on seizure medications and is addicted to benzodiazepines, it is essential that we replace those medications and the only way to do that is through an IV. His abdominal x-ray was negative for an ileus and his blood work showed dehydration which I expected. Sidney came up with us yesterday and spent the night, and she has been a big help with Ryan. She is definitely seeing a new side of hospitalization as we were woken up numerous times throughout the night trying to get all of his meds in. But anyone who’s spent any time inpatient knows you don’t come here to sleep well.

I just wish he still had his G/J so we could bypass his stomach and put him back on the feeding pump to feed him directly into his small intestine. It was  sure nice to avoid hospitalizations because we could manage his stomach slowing at home. He may end up switching back to that while we are here. I guess we’ll see…

Brady, CeCe and their kids will be here Tuesday and I’m concerned we may still be here. We are hosting over twenty people at our house on Thursday, and part of the preparations hasn’t included juggling a child in the hospital. I am certain it will all work out; we’ve definitely learned to be flexible over the years!

I will keep you updated, but for now we are just hydrating Ryan and letting his tummy rest. Thank you for your thoughts and prayers. They mean so much!

These past two weeks have been busy and now here come the holidays right around the corner!  Last week my sister and her husband had the chance to go to Florida so I stayed with their girls for five days.  They are sweet kids, and I loved every minute with them.  But trying to maintain two homes – thankfully only about 8 blocks apart-  and seven kids and three dogs was harder than I thought it would be with Travis working 30 hrs in 2 1/2 days. Yep, trying to grab some extra pay when he can!  It all worked out as I knew it would and most importantly, my sister and brother in law had a wonderful time away.  And now we are springing right into Thanksgiving which I love.  It’s time to cook and bake, and I especially love to have the big meal in my home.  This weekend you’ll find me making peanut butter balls and lots of them.  OK, so those are usually for Christmas at my house, but my brother and sister in law and their kids are coming from Idaho for the holiday and I’m baking for them because they simply love peanut butter balls.  Now if I can just keep the kids from eating them all…..We’ll have a wonderful time with all the cousins together, and I can’t wait for them to get here!

Unfortunately Ryan isn’t doing so hot this week.  He’s only thrown up twice in the past few days but now he is gagging a lot and sleeping more than usual which is not a good sign.  I’m certain his stomach is not digesting as it should – again.  Hopefully we can stay away from the hospital but honestly if he keeps this up that’s exactly where we will be before the weekend ends.  Please pray with us that this passes quickly so we can remain at home and enjoy getting ready for our cousins to come play.

Otherwise things are just fine around these parts.  We’ve got cold and snow and happy kids and all the normal stuff that belongs to this time of year.  Much love to you all!

Yesterday I was on Facebook and saw a post about a friend’s child who was having a procedure in the hospital because of an autoimmune disorder he lives with every single day. And as I read all the comments of support, prayers and cheering the child and his mom on to stay positive and hang in there, the exclamations of how brave this child is, I heard myself secretly say something like this – “Geesh, what’s the big deal? That’s nothing. It’s not like he’s dying”. There he was, a good looking, healthy, well loved boy with so much value smiling at the camera waiting for his procedure. And all my mind could grasp was to downplay the seriousness of the situation and act like his struggles are not a big deal.

I remember seeing a quote or something that basically said this – Be nice to other people. Treat them with respect. Their battle might be much less serious than yours, but to them, it may be the worst thing they have ever encountered. And your worst experience is equal in emotion to their worst experience. It’s just different.

And boy did the Holy Spirit do a much needed work in me yesterday morning. It was like a slap in the face. I was filled with conviction, overcome with grief, washed with sorrow. It wasn’t the emotion of my own situation with Ryan I was facing but instead, the speed at which I so quickly judged another’s journey. It’s easy to do and not just for me. For each of us. We all so easily get tangled in the web of deception that downplays the value of someone else’s situation. We all so easily judge another’s circumstances and challenges with the meter we use to judge the difficulties in our own lives. We all so easily minimize pain, stress, struggles, raw emotions, fears and grief in another’s life if we believe it’s not to the same depth and magnitude of those same emotions in our own hearts.

And what a mistake that is. I found myself thinking of this boy and his family and of so many others I know who are struggling with daily battles. And as I felt the Lord gently speak to my spirit, my heart began to soften and weep. I begged for mercy and forgiveness. I don’t want to compare my own circumstances to those of my friends and loved ones. I don’t want to live a life of insensitivity to the needs of those around me. I don’t want to minimize another’s fears and stress and worry. Instead, I want to stand in the gap for another and pray for strength to overcome whatever the situation may be, for resilience when life gets too hard to bear, for joy when worry overwhelms, for confidence when insecurities say you can’t do this. As someone who professes my faith in Jesus Christ, my responsibility is to show love, not judgment.

At the end of the day, as I sat on the couch curled up in a warm, fuzzy blanket next to my best friend and we shared our hearts, I told Travis of my thoughts. I shared the raw emotions of my judgmental spirit. I had processed the underlying emotions of my insensitivity. And honestly, it came down to this. Jealousy. I wanted to be dealing with what my friend was dealing with because she still has a healthy, active, normal child who runs and plays and interacts and brings life and noise to her home. Jealousy because he isn’t fading away like my Ryan. And in my grief, I transferred my frustrations and sorrow onto another’s situation. I threw all my own insecurities and fears onto that sweet boy whom I have never met. I took my own very overwhelming grief that hides in the darkness of my soul and judged another for having it easier than I do. And so, jealousy spun a web of deception and anger in my heart. By the grace of God and His loving forgiveness for an attitude of selfish jealousy, I was able to pray for this family. I was able to sympathize with a momma’s heart who so desperately wants to take these struggles from her child. I was able to earnestly ask God for healing. I was able to give thanks for this boy and the value he adds to his family. I was able to ask the Lord to bless his story and his future.

It’s a struggle we all face, and maybe some of you are not so bold to speak openly about your raw emotions, but those struggles are present in all of us. We play the comparison game and in it, we diminish the blessings of today. Those gifts God has granted us to be His light in this dark world exactly where He has planted us. Empathy is learned. Being able to come along side someone and show compassion, care and concern is only possible when our hearts are in a place of peace with our own circumstances. We don’t have to like what we are facing, we don’t have to be excited about it all, we can still struggle to deal with the overwhelming emotions. But acceptance of those feelings goes a long way and helps move us to a place of freedom to show care and concern for another. It’s then we can throw off the comparison game and simply love another in whatever place they may be. The Lord doesn’t play the comparison game. He simply gives each of us our own unique story so He can use us for His glory. No journey is better or worse or harder or easier than another’s. It’s just different. And different is OK. We are called to love, and love escapes the boundaries of the whose-life-is-harder meter we all so easily carry in our back pocket. I challenge each of you to throw compassion on another and to see their situation through the lens God is using, not the lens you use to define your own situation. It’s then and only then we can accept the challenges God has given us with joy, to be able to see the goodness of God in His provision, to realize He is using each of us in our own unique situation, to understand we are exactly as God intended us to be.

So while I struggle with sorrow and grief over a life slowly slipping away, while I fight not to focus on everything this awful fading is taking away from me, joy is still found. Compassion for another is present. Energy to reach out and pray for a friend still has value. Focusing on all the blessings and goodness of God is reachable. May each of you be challenged to see another through the lens of compassion, casting aside the lens of comparison.

It’s been three weeks since the double birthday, and all is well at our house.  Sidney is driving a lot and actually doing a fantastic job at it!  All three kids are done with sports, and the boys have their end of the season football banquets this week.  The uniforms are washed and returned, and we are back to having them all home for dinner at the same time every night.  I always love fall sports and all the games and really hate to see it end so quickly, but I’m also ready when the day comes that we have our evenings back and we get more time with the kids during the week.  The older three are doing well in school, and there really isn’t a whole lot to say about them. They are happy, healthy and enjoying time with friends – simply normal teenager stuff.

Ryan is doing well at school but comes home completely exhausted.  It’s as if he has just enough energy to get through those four hours then he is done.  He requires so much more sleep now, and it is normal for him to be sound asleep on the couch when I get home from work and not wake up until 8 pm then go down for the night by 10 pm.  It makes me sad to see the slow fade continue.  We’ve reached yet another new normal, and the accompanying grief we all feel as this new normal settles in is hard to talk about.  It’s the slow fade, the loss of a voice, the fatigue and wearing down settling in.  The smiles are leaving, the voice is hiding, the eating is lessening, the muscles are weakening.  He simply does not enjoy the things he once did at the same intensity.  He no longer screams and squeals.  He no longer has a big appetite wanting to eat several times a day.  He no longer looks people in the eye like he once did.  He no longer picks up a nearby hand to scratch and rub his arm and hand the way we know he likes.  My heart hurts for the loss.  My mind has a difficult time wrapping around the new normal.  My eyes fight the tears when I focus too long on the changes.  It’s the long goodbye none of us wants to face.  It’s the diminishing of connection.  It’s the acceptance of fading we struggle to grasp.  I don’t want a shell of a son. But that’s what I am being given a little more every day.  Our love will never fade.  That I know for certain.

And as I sat in church today, I was reminded of Job 2:10 when Job says “Should we accept only good things from the hand of God and never anything bad?” Travis often reminds me of this truth, and then I focus on God’s never ending grace.  Grace to see me through the heart wrenching days when all I seem to focus on is the tremendous loss.   Grace when I’m reminded of how much our sweet boy has endured and overcome.  Grace to hold me through the reminders that every bit of fading here is bringing Ryan one step closer to meeting Jesus face to face.  Grace to smile at the blessed promise of eternity.  I can hardly bear the thought, but the simple truth is right in front of me.  Ryan is an angel the Lord sent to do His work, to bring others to Christ, to show all of us His provision and gentle mercies.  And in the fading, I find the courage to tell God I’ll take the good and the bad.  Even when my heart wants to scream “I want him back! Give me the noisy, mischievous little boy who loves to throw things and have fits of laughter!” I’ll take what you give me, Lord. And I’ll do my best to stay joy-filled and faithful.

Matthew 6:25-34 gives the best reminder of God’s perfect provision: For this reason I say to you, do not be worried about your life, as to what you will eat or what you will drink; nor for your body, as to what you will put on. Is not life more than food, and the body more than clothing? Look at the birds of the air, that they do not sow, nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not worth much more than they? And who of you by being worried can add a single hour to his life? And why are you worried about clothing? Observe how the lilies of the field grow; they do not toil nor do they spin, yet I say to you that not even Solomon in all his glory clothed himself like one of these. But if God so clothes the grass of the field, which is alive today and tomorrow is thrown into the furnace, will He not much more clothe you? You of little faith! Do not worry then, saying, ‘What will we eat?’ or ‘What will we drink?’ or ‘What will we wear for clothing?’ For the Gentiles eagerly seek all these things; for your heavenly Father knows that you need all these things. But seek first His kingdom and His righteousness, and all these things will be added to you. So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own.

So when I start to worry about the fading, when my heart zeros in on the loss, when my mind dances with the fear of what is coming and when I take my eyes off the Author of Life, I remember these verses. And I think of Proverbs 30:8 and ask My Heavenly Father, once again, to give me only my daily bread.  Just enough to get me through.  Just enough to remain faithful to His call on my life. Just enough to find joy in the circumstance of today. He’s got tomorrow.  My job is to be faithful in my here and now.

Tuesday was Sidney’s 15th birthday and Ryan’s 11th birthday! We had a great day and celebrated with hamburgers on the grill and a cookie cake and ice cream with grandpa and grandma Mac. Here are a bunch of pictures for you –