rehearse your victories

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.

5.4 miles with God

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.

enjoy today

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.

summer please don’t go

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.

day 7 post op

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!

healing & almost home

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.

another update

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.

he’s a sleepy one

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.

let the healing begin 

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.

waiting for surgery

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!