Ryan was scheduled to have his vagus nerve stimulator battery replaced at 1:00 today, but the surgeon was running late. He ended up going back at 2:30 and thankfully after interrogating the unit, the battery was dead but everything else was working just fine. He is now in recovery, and Travis just went back to be with him. We are thankful everything went smoothly and hope to be out of here in the next two hours. Thank you for your prayers!

The Lord has blessed us with every surgery as Ryan has come through the anesthesia with no problems. Now we just need to continue to pray he does not develop another ileus which he has already had three times after surgery. Travis has mandatory training all day tomorrow so I will be home with him, and we will spend lots of time resting. Again, thank you for your prayers. I’m sure Ryan will be very sore for a few days, but he is a strong little man and I know he will heal quickly.

It seems this season is so busy with kids coming and going. We are hardly ever all home for a meal together unless we wait for all the kids to get home from practice which is after 8 pm. Tonight Travis is grilling hamburgers, but we won’t eat until nearly 9 pm when they all get home from church. It’s a very busy season for sure! And I’m not complaining. They love school, love football and volleyball, love their friends. The Lord has blessed them with health and energy to handle it all. The biggest perk for me is not having to remind them to do homework!

Ryan is doing great in school and as we predicted, he is loved fiercely and deeply by his paras and teachers. He recovered quickly from the stomach bug that kept him from surgery last week, and surgery was rescheduled for next Monday, September 22nd. Same time, same place. Travis has training all day on Tuesday so I’m going to stay home with the little guy and give him an extra day of rest. He’ll need it as I’m sure his incision will be sore. The stimulator is buried in his chest wall muscles so it will be tender for a while.

Travis’s mom sees the oncologist on Monday while we are at Children’s. As you can imagine, everyone is anxious to find out what her treatment plan is for the next few months. I hate to see anyone have to go through chemo, but there really isn’t any other choice. She has a very strong community of family and friends to come together and offer support. That in and of itself is such a tremendous blessing!

I just love this time of year and all the fun it brings looking for fall recipes. I’m having a renewed love affair with pinterest and all the cooking blogs I love. And then there are pumpkins (outrageously priced at $6 a pumpkin! Seriously?!) and cooler weather and football on TV. And with the changing leaves and open windows comes the big double birthday. We have just under three weeks before Sidney (15) will be driving and Ryan (11) will be celebrated too. I look around and wonder how it’s possible we are now reaching 11 years since Ryan joined our family. What a blessing all four of these kids are! I can’t imagine my life without them.

I was reading one of Lysa TerKeurst’s books recently and was struck by a simple two word phrase she used – “unsettle me”. Simplistic but powerful at the same time. It’s been my prayer lately. It’s so very easy to get stuck in a rut – a good place – but a rut none the less. My life revolves around the kids’ sport schedules, making sure their laundry is done, checking grades and keeping up on the events of their days. And in the busy life we find ourselves in, it’s easy to get stuck. To feel settled. To be complacent. And that’s not a place I want to be. So the simple phrase “unsettle me” struck a cord in my heart. I don’t want to settle for anything, but I find myself in that exact spot on so many levels. Instead I want to be an encourager. I want to minister to someone around me who needs love. I want to push myself past the limits of my “I can” and find my “I will”. I want to set goals and strive to hit the mark. I want to communicate love to my family and friends. And most importantly, I want to be Jesus to those around me. I know of some people in my circle who are desperate for love. Who are lonely and met with sorrow. I know of some who have met stress at the peak of breaking and others who simply need to hear the words “I care”. Because no matter what those around us are facing, we all need to be unsettled. We all need to push beyond our comforts and give some love. Hand over encouragement. Be the friend who sits silently close by. My prayer for each of you is that you find your “unsettle me” moment and grasp the hope of Jesus to extend to those around you. People are fighting some big battles. Let’s all be unsettled, thrown on some compassion and bless someone around us.

An hour before we were going to leave for the hospital, Ryan threw up and now has diarrhea as well. He must have caught a stomach bug so surgery is off for today. Thank God this all started before we drove to Omaha. So now we will have to reschedule which is disappointing but we can’t risk his health by putting him through surgery when he isn’t feeling well to begin with. I will update you when we know what the next surgery date will be. Enjoy your day.

Our busy season is in full swing, and we made it through our first crazy week. Travis and I have been having a blast watching the kids play football and volleyball; all three of them have really improved since last year. Brad has two full weeks of football under his belt. He hasn’t played very much in the varsity games but is a starter on JV playing center, defensive end and punter so he sees a lot of action. He’s had some really great plays and the JV team won both of their games so far. Sidney had her first triangular on Thursday (three teams playing each other) and did great. I think I mentioned earlier she hurt her back and was doing physical therapy which helped so much. With her limited practice time, she still played a lot and just did a wonderful job. She is now done with therapy and is fully back in practice and feeling really good with no back pain. They won all four matches this week which is a great way to start the season. Last night we had her team over including the parents so it was a house full, but we had a fun night and enjoyed getting to know everyone. It was really fun to watch the girls bond and hear all their screams and laughter. The whole team gets along so well and have really bonded which helps on the court too. And Trevor played so well in his first game but the score in overtime ended with 0-0 so they didn’t win – but they didn’t lose either. I’m thankful for the cooler weather as we sit through three football games every week now. And little Ryan did fabulous on Thursday as he contently sat through all three volleyball games then the second half of the varsity football game. It was over four hours of noise, but he didn’t squabble once. Travis and I were really shocked at how much he tolerated, but we don’t plan to put him through that every week. He deserves to be at home where he is comfortable and can relax as much as possible.

Monday is Ryan’s next surgery. It should be quick and easy but I’m always a little leery and anxious putting him under general anesthesia. His track record for coming out of anesthesia without any respiratory problems is 100% so hopefully he’ll keep that record going strong. The battery in his vagus nerve stimulator died so it needs to be replaced. What should have lasted at least seven years only made it three years before puttering out which is disappointing. We don’t know if there is a defect, which I doubt, but they will interrogate it in the OR to make sure everything works as it should. One of the people from the manufacturer will be in the operating room during surgery just like he was when they put it in the first time. His settings are as high as they can be so the stimulator fires for twelve hours every day – on one minute, off one minute. My guess is the battery died due to the high settings. We should be home Monday evening if everything goes well.

Otherwise things are pretty mundane right now as we live the busy life. Having 3 to 6 games every week is plenty with all of Ryan’s therapy, the kids practices, work schedules and homework. We are enjoying these years even with all the busyness they bring because soon enough the kids will be out of the house and we will be spending our nights at home with Ryan. God has been so good, and we don’t take any of His blessings for granted.

Happy fall! The weather today couldn’t be better, and I am off to make two caramel apple pies and a whole bunch of caramel apple cinnamon rolls. My sweet neighbor left a huge bag of apples from their tree at our door this morning with a brand new apple corer/peeler so he is getting some of the goodies. I think he did this just so I will bake for him 🙂

Please keep Travis’s mom in your thoughts and prayers as God brings her to mind. They have some tough decisions to make in the next two weeks as they meet with the oncologist. It’s never easy to watch a loved one walk the hard road, especially when you can’t do anything but pray and love on them. At least we can all stand strong in our faith and trust our Heavenly Father to keep her in His care in the center of His will.

Love to you all!

Today was one of those days when I listened to the same song over and over and over again. At my desk, while working out, in the car, while shopping at Target, around the house. Because music, to me, is a prayer. It’s how I express my heart, how I tell the Lord my longings, when I plead for mercy. Music is peace. Music is comfort. Music is promise. Music is more than worship. It’s connection and communion. So when life gets hard, music enters my soul in a deeper, more personal form. Because music expresses my heart in ways my words cannot. Music patiently awaits the tears that fall. Music is the release of my worries and fears.

And today there are many of those worries. My heart is so heavy. Because after one more sleep, my sweet mother in law is heading to the operating room so the surgeon can see how extensive the adenocarcinoma invading her colon really is. The silent killer will no longer be able to hide. And I pray and plead for mercy on her body. Because I lost my mom. I know the pain of watching the one person who is the cement of a child’s life be ripped from me. I experienced the longing for one more kiss, one more conversation, one more moment of safety next to my mom. And even as an adult, I have craved that mother/child relationship. So when those familiar emotions of fear and worry take over and push the confidence out, music brings balance back to the slippery slope of living in fear or the choosing of living in faith.

When my phone called out to me with the familiar beep of a new text message today and told me Ryan is heading back to surgery in ten days, I ran to my song. My over and over and over again song. Because for today, surgery equates scary. Today surgery means after one sleep, my sweet second mom will be in pain. And I can’t take it away. Surgery means one more chance of something going wrong with Ryan. It means pain and more incisions. It means his seizures and delays and every other problem are back at center stage, vying for attention, calling out for my energy, zapping me of strength, teaching me of longsuffering again. And sometimes I just get so tired of putting one foot in front of the other with Ryan’s issues. Sometimes I don’t want to climb the rocky path. Sometimes I want a gentle breeze, a smooth sail, a lingering pause. But it simply never comes. I tell the seizure monster of my fatigue but he doesn’t listen. So surgery has to visit again to replace the battery that died far too soon. The nerve stimulator puttered out because we pushed it to its limits. I don’t feel like doing this again. The emotions of another battle zap my energy and reserve.

And in between these two surgeries for two people I dearly love is Travis’s appointment with the orthopedic surgeon next week to find out why his foot is so swollen, why he has been limping for months, denying the pain the attention it seeks. He has a pin in this foot that bombards his body with anguish. Four days before Ryan’s last brain surgery, Travis had screws and a pin put in that foot. And now something is wrong again. It needs attention. Maybe more surgery. But something is not right. So soon we will face this bump on the journey too. We simply can’t afford another surgery. Not emotionally. Not mentally. Not financially. Not physically to work out Ryan’s care.

Then there is Sidney who is sidelined with a lingering back injury requiring physical therapy three times a week and keeping her from her passion. Keeping her from dwelling in the outlines of the volleyball court. But injury fights for attention. It steals peace and comfort. So therapy it is. But the pain and muscles spasms don’t know my girl. They don’t know she is a fighter. She gives her all to whatever is put in front of her. And she will battle back to health and volleyball. When you are fourteen and playing high school ball for the first time, sitting out is devastating. But this strong girl knows how to fight. She knows disappointment. She’s struggled and walked hand in hand through the hell of watching her brother suffer through seizures and declining health. She’s got this. She will come out stronger and more confident in her abilities. But right now, she is disappointed and physically hurting. And that hurts my momma’s heart more than any physical pain could ever pull me down.

So this song. These words I’ve listened to at least twenty times today. This prayer and praise I’ve memorized and buried in the corners of my heart. These are the words. They are comfort and promise. Listen to them. Write them on the walls of your heart as well and keep them close for the moments when you are suffering. For the moments when you hurt for a loved one. For the experiences that disappoint and bring tears. Because we all have them. We all face trials. But these words. They are truth. They are God’s tender love for us.

When I walk through deep waters

I know that You will be with me

When I’m standing in the fire

I will not be overcome

Through the valley of the shadow

I will not fear

I am not alone

I am not alone

You will go before me

You will never leave me

In the midst of deep sorrow

I see Your light is breaking through

The dark of night will not overtake me

I am pressing into You

Lord, You fight my every battle

And I will not fear

You amaze me

Redeem me

You call me as Your own

You’re my strength

You’re my defender

You’re my refuge in the storm

Through these trials

You’ve always been faithful

You bring healing to my soul

It’s the amazing truth in doing the hard things. We are never alone. Even when the darkness presses in, when the walls come down, when the fear overtakes and drowns us. The Lord fights our every battle. He goes before us. He is our safety in the storm. He calls to us. But the choice to trust is ours freely given. The offering of peace is the decision we must make minute by minute. When colon cancer comes to steal peace, when the seizure monster unleashes his power, when pain and swelling take up residence, when back problems rob opportunities and dreams, we are not alone. Our Heavenly Father has already gone before us preparing the way. Sometimes it’s healing, sometimes it’s delayed success, sometimes it’s disappointment, sometimes it’s relinquishing dreams and plans. Whatever we face, He’s there ready to walk us through it. Our Jehovah Shammah. I am not alone and neither are you. What peace that promise brings when we trust the process. When we place ourselves in the heart of His will. Tomorrow the deep waters will rush in. The emotions will run at high tide. The fear will press the borders of peace. I’m not ready for the days ahead. But God is. Especially when life gets hard. I am not alone.

Psalm 23:4 ~ Even when I walk through the darkest valley, I will not be afraid, for you are close beside me. Your rod and your staff protect and comfort me.

Two more firsts are in the books – first day of high school for Sidney and first day of junior high for Ryan. Sidney was cool as a cucumber as she left for school. I fully expected at least a hint of anxiety on her first day but found none at all. I am certain having an older brother and knowing all his friends – a few who were there that first day of only freshman – made a big difference for her. She is confident in herself which is probably a big part of it. I can’t say she is excited about the piles of homework she will be experiencing by the end of the first couple of weeks!

Travis walked Ryan into school and took him to the special ed room that first day. Or I could be politically correct and call it the resource room, but it’s all the same as far as I’m concerned. He got Ryan settled in at the table and fed him some fish crackers as he talked with the teacher and para. I can’t begin to describe the anxiety both Travis and I felt that last summer night; you could almost physically see the tension in the room like a low lying fog. We were short with each other and struggled to mask our fears. I told someone taking Ryan into a new school felt like placing a 12 month old boy in the middle of a parking lot and expecting someone to be able to come take care of him and know what he needs. It was truly handing Ryan over to a room full of strangers. Trust does not come easily with a child who cannot speak, whose language is in facial expressions and body movements known only to those who are deeply connected to him in time and emotion. Ryan is fragile and vulnerable. And while he has endured more than most at his young age making him a fighter with endurance beyond measure, he is still a simplistic child who relies on the attentive love of another to anticipate his next want and need. His angelic demeanor is addictive, sweet and tender so I am certain he will quickly meet his paras and teacher in a place of devotion.

So here we are closing out the second week, and all is well. Trevor is doing great, but in 8th grade, there is nothing new to get excited about. He’s simply loving that I am taking him every morning and he doesn’t have to car pool anymore. If there is one truth about Trevor it’s this – he likes to be early. So having mom in his back pocket to leave when he wants is a big deal for my on-time guy. Brad is doing well and really looking forward to the first of many football games next week. He’s my stay-on-top-of-things kid who needs a gentle reminder every so often to make sure things get done on time. We all have at least one child like that! Such a great guy but not the most internally motivated one of the bunch. He simply gets busy with things and “forgets”. You know, the important things like homework assignments that affect his GPA. And Miss Sidney loves high school which I fully expected. She started volleyball this week and is in full swing with practices and anticipation of her first game in two weeks. She’s happy.

Last night I had to spend over an hour simply trying to organize all the games for these kiddos. Brad has a JV and a varsity football game every week, Trevor has a football game every week and Sidney has anywhere from one to three volleyball matches each week. So for the next two months, we have anywhere from four to six games each week! And of course we want to go to them all. What parent doesn’t? These years will be gone soon enough so I want to gobble up every chance I get to take in every activity the kids are involved in. Thank God for amazing grandparents who are willing to hang out with the Ry guy, and our sweet respite gal who we are trying to stretch out as long as we can. She’s getting older, is married, will be starting a family soon and as expected, is moving on. It always happens, but it’s sad to see our respite family members go. I’m trusting God is going to provide another college girl soon. Trying to figure out which kid is going to be home to stay with Ryan or if we need to find someone else to watch him is a feat. With everyone coming and going to practice and games and church and other activities on top of Travis working part time evenings, it’s a chore to keep everyone accounted for. My head spins even when I’m not looking at the overly full calendar. I’m so thankful for my job which I love partly because of the flexibility allowing me to be home every evening and weekend and leave early when I want.

With school starting came the news no one ever wants to hear…..Travis’s mom was diagnosed with colon cancer. He called me at work to tell me and I simply said “oh sh*^%” as I broke into tears and sobbed with big alligator tears falling onto my work. I found myself instantly surprised at my reaction which was much stronger than I anticipated, but then I realized the familiar emotions stirred up from the death of my mom fourteen years ago. I miss her. It’s a loss of security really. I don’t miss the strong emotions that stirred my spirit. The loss. The missing. The thoughts of everything that could have and should have been. But she is dancing with Jesus. And soon I will join her for all of eternity. We have been so very blessed by the health of those around us. My dad and his wife, Travis’s parents, my siblings and their spouses, my beloved nieces and nephews. Everyone has been healthy. I think we often take it for granted so when a diagnosis like cancer comes crashing down, it’s a lot to take in. Oh sure, Ryan is never stable medically and every day he seizes and shows signs of weakness and fading no matter how subtly the changes come. Losing Ryan is an expected journey. Watching the slow fading of strength and ability is anticipated and known. Sending him to surgery is the well worn slipper. We’ve worn that experience over and over. But the loss of a mom’s health, no matter the age, that’s the one hard to bear. So now she heads to surgery. Now she faces unknown results. Now she faces recovery and vigilant doctors monitoring for change. By the grace of God alone colon cancer was found early. By the grace of God, for today, she is only facing a difficult surgery. By the grace of God, her health will return and the Lord will keep her strong for years to come.

But the known truth, no matter how uneasy it feels, the known truth is no tomorrow is ours for the taking. No tomorrow can be trusted to show up. No tomorrow can be relied upon to bring us health and happiness and contentment and the company of those we love. We can fight it. We can buck the rules. We can protest. We can cry over it. But the truth of every tomorrow lies in the hands of the Almighty God who is the granter of each life sustaining breath. Years ago my older sister gave me a photo frame that has Jeremiah 29:11 on it, and it remains one of my favorites. One I pray over my children ever so often ~

The truth is the Lord can be trusted with my 12 month old but 10 year old boy. The Lord can be trusted with worry over a mom’s cancer. The Lord can be trusted to manage and attend our need to keep Ryan home when the kids have sporting events. The Lord can be trusted to handle each day as it comes. My finite mind wants to control. It craves bossy words. It seeks my way. It lunges toward limited reasoning. It worries over details. But really, honestly, I’ve got nothing on my Heavenly Father’s plans. I can’t begin to compete or play Let’s Make A Deal with the creator of time. It truly boils down to trust. To faith. To believing even when it takes every ounce of energy to let go.

Next Friday you will find us trying to cozy into uncomfortable chairs positioned where we can glance frequently at the clock. We will be speaking of unimportant things. We will be pretending we don’t notice the raw, stabbing fear bubbling deep within. We will hold cups of cooling coffee and watery Dt Coke. Travis and I have done this too many times. More than we thought we would have to endure. We know the drill. We do waiting well. And next Friday the same God who has seen Ryan through every procedure, every test, every desperate plea for healing will show up. And He’ll be early. That same God will show up and see mom through the cancer monster’s intrusion.

I didn’t want my kids to start their new school year hiding worry over their grandma, pretending her health doesn’t enter their thoughts. I didn’t want to tell them of surgery. But real life means bumps in the road. Real life means disappointment. Real life means things don’t go as we plan sometimes. Real life means the reminders come to put our trust in the only place that hands out peace. And that is Jesus Christ. He is merciful. Even when books and pencils demand our time, when muscles ache from jumping and running plays, when alarms sounds in the darkness to start a new day. He fills us with the grace to face another hurdle. He grants us the blessing of another breath. He showers us with love indescribable. It’s our choice to make. We can’t control circumstances but we can accept the journey with thanksgiving for all that is good. And there is always, always good on the journey.

Ryan is pretty much back to his old self but he has an infection at the cecostomy site. I expected this because when his g-tube was put in seven years ago, it was infected for months. He is on an antibiotic now, and it is obvious he is in a little bit of pain. We have also had some problems getting the new tube to flush every morning for about a week now. It’s very hard to push the fluid through for the first 20 ccs or so then it gets very easy for the last 40 ccs. I called the surgeon, and he wants to see how he does for the next week or so to see if it resolves. We already have a follow up appointment in a week so if we are still having problems, they will do an x-ray when we go back. The nurse had never heard of this problem, and by the doctor’s answer, I’m guessing he hasn’t either. It could be something as simple as a little kink in the tubing, but whatever it is, we are hoping it resolves soon. Today Travis took Ryan to Omaha to see if the battery in his vagus nerve stimulator still has any life in it, and sadly, it does not. The battery is completely dead so his VNS has not been working for a while. That explains the increase in seizure activity we’ve seen lately so we know it does help when the battery works. Those batteries are suppose work for 7-9 years but Ryan’s only lasted 3 years! His settings are very high – as high as we can go – but I don’t think anyone expected it to die this quick. I’m sure you can guess what that means – more surgery. Ugh! We have been so thankful Ryan came though the cecostomy surgery without any tummy issues and now we have to put him through surgery again. The neurosurgeon’s office will call us probably next week to schedule it, and thankfully we don’t have to go in and see this surgeon before we head to the OR. And we love this surgeon – he is the one who did all four of Ryan’s brain surgeries, and he put the VNS in too. At least it’s a quick procedure but it still requires an incision in Ryan’s chest and another possibility of his GI system completely shutting down.

School starts in only five days! Travis is having a hard time thinking about sending Ryan to middle school; I think I’m just in denial about it because I’m fine. It’s going to be a very hard transition for sure. The kids are so busy, and Sidney and Brad are already working on homework assignments. They both had to read a book and do an assignment that is due before school even starts. Sidney is in diff literature and Brad is taking an AP lit class. At least school starting means fall is right around the corner! It’s my favorite season (can you say football?!) and I can’t wait for cooler weather so I can open all the windows. Trevor started football practice last night and this evening he came home very sore. I have to take him for mandatory concussion testing tomorrow night at one of the hospitals and then next week he starts in on nightly two hour practices. This is our last year doing Midget Football which is kind of bittersweet.

We are facing a few bumps in the road with Ryan, but overall, things are going well. It’s all about perspective and everything that is not going as we hoped can be fixed so we will deal with it as we have with everything else – one day at a time. The Lord has blessed us with health for Ryan and while he may be weakening, we have been able to avoid serious, acute illnesses and that is definitely something to be very thankful for!

Blessings to you all!

Ryan is doing so well! He’s back to his old, normal self which is so nice to see! Those first several days after surgery last week were tough ones, and we both wondered to ourselves if we had made the right decision. But as I said in the last post, sometimes you just have to go with your gut as a parent and do what your heart is telling you is the right thing. And for us, that meant changing Ryan’s flush schedule from what the surgeon told us to do to what we thought was manageable. And we were right! Ryan’s body has responded wonderfully to the cecostomy, and we are flushing his colon every morning with results coming in less than an hour. Now that we are through the initial shock of surgery and the changes to our daily schedule, we are so very happy we decided to do this. Ryan is no longer in pain, struggling to stool. And we don’t have to give him any laxatives anymore or worry about tracking his stools and how long it’s been since he went. I would highly recommend this surgery to others who struggle with a failing GI system, paralysis or severe chronic constipation.

This week is busy as summer comes to a close. In ten days or so the kids will be heading back to school. I’m not really ready to deal with homework, studying and early mornings again, but I am very much looking forward to football and volleyball. We are going to be very busy for the next few months but it will be a fun kind of busy. Sidney and Ryan are both transitioning to new schools but thankfully everyone will now be on the same schedule with school starting and ending times which will be nice. It’s hard to believe we will never step foot into an elementary school again, but I’m excited to have them all in only two buildings for pick up/drop off purposes.

We are still looking for someone to do respite for us this fall and have not had any luck yet. Please pray with us that the right person will come along soon. If any of you know of a college age girl who might be interested, please let us know. It’s not a lot of hours – like maybe 5-8 a week at the most – but we want someone who is friendly and has a passion for special needs kids. In the past we have been so very blessed to find some amazing young women who have grown very close to our family. It’s hard to trust Ryan into someone’s care but thankfully the Lord has blessed us and we are trusting He will do the same again with this next person.

Travis and Sidney are in Idaho right now with Trav’s brother and his family. Of course they are having a blast boating, tubing and enjoying family and the beauty of Northern Idaho. I so wish I could be there but I get to stay home and take care of the boys. And it’s kind of boring without those two home! I miss them. I guess I’ll just have to look forward to next summer when we all meet in Park City, UT, for a week of family time.

Thank you, once again, for all your prayers for Ryan these past two weeks. God is the great healer and He has done a fabulous job taking care of Ryan. Here is a picture of his Chait door which is the name of the tubing used for the cecostomy procdure; his belly was still pretty red and there was still a steri strip or two. He also had a smaller feeding tube placed during surgery instead of the one he has had for the past seven years; it’s better quality and doesn’t stick out so far. He now has a vagus nerve stimulator deep in his left upper chest, the feeding tube in his left upper quadrant and the Chait in his right lower quadrant. I think that’s enough hardware for one body!

There is a song by Danny Gokey, a Christian singer who made his debut on American Idol, I absolutely love. He made his first appearance on the show only four weeks after his wife died from complications after surgery for a congenital heart condition that she had a 90% chance of fully recovering from. It was his last chance to audition because he had reached the age cut off, and so only 4 weeks after her death, he started the journey God used to launch his music career. His first hit was “Hope In Front Of Me” which quickly became one of my very favorite songs. It’s one I played repeatedly in the past two weeks, especially when I would fall into the ugly pattern of listening to defeating thoughts, worry and despair that would run through my head. I struggled to keep hope, to grasp onto God’s truth, to remember there are better days ahead, not only for me but for Ryan too. Here are some of the lyrics:

I’ve been running through rain
That I thought would never end
Trying to make it on faith
In a struggle against the wind
I’ve seen the dark and the broken places
But I know in my soul
No matter how bad it gets
I’ll be alright

There’s hope in front of me
There’s a light, I still see it
There’s a hand still holding me
Even when I don’t believe it
I might be down but I’m not dead
There’s better days still up ahead
Even after all I’ve seen
There’s hope in front of me

There’s a place at the end of the storm
You finally find
Where the hurt and the tears and the pain
All fall behind

You open up your eyes and up ahead
There’s a big sun shining
Right then and there you realize
You’ll be alright

By Friday night, Travis and I knew we had to take matters into our own hands and decide for ourselves what course of action we are going to take with Ryan. Sometimes a parent’s instinct really is the best course of action. We simply get caught up with questioning and second guessing ourselves. After the hellish days Thursday and Friday were, we came to the conclusion we are going to do what we think is best, regardless of what the doctors say. So with that, we decided to only do once a day flushes. It’s the schedule he will be on for the rest of his life, so why not start it now? The doctor sent us home from the hospital with instructions to do the flushes twice a day until we see him in the office in a few weeks. After agonizing over Ryan’s pain, we decided to cut back. He simply never got a break. Saturday we didn’t do any flushes at all to give him relief and time to really rest because he has been in such constant pain the past two days and we knew his body needed a break. All day he was more alert, smiled, less stressed and a little bit more himself. Ryan still will not walk, certainly from the pain of surgery, and he refuses all food but in time, I’m sure those things will come back. We have decided to do his flushes in the morning every day because he is always home then. And the evenings are tough because of the kids’ activities. We plan to take him to as many games as we can this fall. This morning I started on our new routine and he did great. He didn’t have the cramping and pain he has shown with the previous flushes and he did stool within an hour. We gave him a bath and moved him to the couch where he is sound asleep. I know there will be more rough days as his body adjusts to these flushes, but in all, I feel confident about the decision we made to go with our gut.

Of course it concerns me that he refuses to walk and won’t eat, but it will come with time. He loves his Doritos and chicken nuggets too much to never eat them again. The weakness of the body is here, but certainly his strength will increase in the coming days. We simply need to give him time. Then again, he stopped drinking after his last brain surgery in 2012 and to this day refuses to drink any liquid. So who knows….it’s one day at a time.

A dear friend who has already sent one of her sons on to Heaven gave me the most profound words this week. Such wisdom from a mom who has been there and knows the pain of my heart. Her words struck me deeply. I needed this. I truly needed these words. I think all of us need these words because each of us has own our cross to bear ~
I remember screaming out loud in my house, car, in the shower, and on my knees to God…WHY?? WHY MORE TO HIM AND NOT SPARE HIM? The “Why” list right? It seems like every time you go through this you think it will be better if that is even possible, and yet, you are so right in that it just takes the literal breath out of us to see our kids in so much pain, to go through so much agony, to bear more than we have. I remember when Matthew was little, actually it was his first, very first surgery of a total of 26 surgeries…I remember sitting in the recovery room and all these people were in there so I couldn’t scream out loud so I was screaming really, really loud at God in my head….”Don’t you know how much I love him? Don’t you know I would die for him? ” It was in that moment I would understand something so precious, the true love of salvation and the cross, and really how much God understood me and what was happening. I was enveloped with a presence, that all I can describe is a presence that enveloped me and inside was a voice in my head that said “My sweet girl, I do know what you feel and the pain you feel and the anger you feel, because that is exactly what I was feeling when they were beating my Son and when they were cursing my Son and when they crucified my Son”…I broke and cried. All of that to say is this….I still cried and screamed at God and grieved when my son had to go through more but I realized that God knew just exactly what I felt, so it helped me trust Him even more….it made the trust so real, so real that God walked this same road with His Son, just like those of us with kids walk the road together, helping and lifting each other up in prayer and anything else you might need…..in Psalm 139 God says He KNOWS each of us before we are even conceived and He is so intimately involved in each of our creation, I sometimes wonder, do you think He had conversations with our boys prior to us even knowing them and talking this all through with them. Maybe they didn’t know all the details, but, do you think they were willing to do this hard road so others would see Christ through our families? So others are brought to Christ because of their smiles, their joy, their love, true unconditional love that is such a mirror of what the Father truly intended? All I know for sure, is you are much loved and so is your family, not only by those of us here, but, by Him who created each of you to be those lights…..

Such words of wisdom could only come from someone who has walked the road, who has been in the depths of despair and the pain of suffering but who also knows the joy of parenting one who is fragile, who in that frailty is changing the world as only he could, as only God could empower him to do. I love this verse she gave me, one I have not read before ~ Lord, when doubts fill my mind, when my heart is in turmoil, quiet me and give me a renewed hope and cheer. Ps. 94:19 This is one I have memorized and will carry close to my heart because there are many times I will need to repeat it over and over and over again. There is nothing as powerful as the Word of God.

Another faithful friend, a godly woman whom I highly respect, said this ~
Kim I want you to read Gods word over your son Ryan, rather he is sleeping and awake in bed. Jesus is there and He does know what Ryan is going through as he was beaten so badly before He went to the cross and suffered so on it as He bore it all for us down here. God has angels around your beloved son. Matt 18:10 says so…..See that you do not despise one of these little ones. For I tell you that their angels in heaven always see the face of my Father in heaven.

The Lord speaks to us in many ways, and this week he has clearly spoken to me through the words to friends. How could I possibly forget Jesus’ death on the cross? Of course God knows my grief! Of course He understands my longing to trade places with Ryan and take away his pain! Of course He hears my pleas to stop the progression of this unknown disease! He had those same thoughts and emotions as he sent Jesus to the cross. Sometimes I find how easily I can forget that even when I feel alone, when no one else gets my heart, my Heavenly Father most certainly does indeed know me and is so very close. I am never alone. Ryan is never alone. I did as my friend said and stood over Ryan as he slept last night and prayed God’s word over him. I pray for my kids all the time, but last night I prayed with a boldness I haven’t felt in a long time.

As I’ve said before and will continue to say, thank you. Thank you for walking along side us, for lifting us in prayer, for your words of kindness and concern, for the prayers. Thank you for the meals and gift card which have been such a blessing as Ryan has required so much care these past few days. God is good and His provision is amazing. I look forward to the day when we can pay it forward and bless others as we have been blessed. It’s amazing what something as simple as a meal can do to ease our hearts and lift some of the daily stressors. God bless you all. You are loved!

I went in to work early this morning and left at noon so I could be home with Ryan for the afternoon as Travis was gone. He slept all day long. Literally all day. He hardly even changed his position on the couch. His poor little body is completely exhausted, and he obviously needs the rest. I just pray his body is healing while he sleeps. This evening, with trepidation, I gave him the bolus to clear out his bowels. After about an hour or so, he started to cramp pretty bad. It’s just too much to bear watching him in pain. I would gladly saw off my own arm, volunteer for a torture chamber and let someone beat me to a bloody pulp if I could take away the pain Ryan is going through with these flushes. It’s beyond words. My heart can hardly contain the emotion of watching my son, who understands nothing of what we have done to him, suffer because Travis and I chose to put him through this procedure. I feel betrayed and misled about how hard, how terribly hard, this would be. If I had known what I know now, I would never have done this. I realize this hard season is temporary and is supposed to get easier the more we do the flushes, but gosh darn it, the cramping Ryan is suffering is intolerable.

He wanted to stand up but I didn’t want him on the carpet we just replaced a few months ago so I took him to the bathroom and he sat on the toilet. Nothing happened except for his constant cries of pain as he grabbed on to me tightly. All I could do was say the name of Jesus over and over again because no other words would come. He didn’t have results so I carried him back to his bed and he finally fell asleep as I stood over him rubbing his leg and praying for relif from his cries of discomfort. I’m hoping the worst of it for tonight is over.

My sweet boy has just been through too much in his short life. At times like this it is so hard to trust the faithfulness of God. To really believe He has all this under control. I want to scream at God and tell Him he is failing Ryan. Tell Him he isn’t near to the brokenhearted as he promises. Yell at Him for not bearing Ryan’s burden. My emotions are crazy right now. The logical, realistic part of me says this is simply his colon trying to get through the trauma of surgery and the shock of having fluid pushed into it. It’s rebelling by contracting and cramping. I get that. The nurse side of me completely understands the process and knows with time this will be a simple, predictable procedure that will save Ryan a lot of pain and discomfort from the effects of a large intestine that doesn’t know how to work anymore. Then there is the mom in me who wants to scream and cry and protest and have a big tantrum and tell the doctors to go to hell because they are all idiots and didn’t tell us what to expect. And maybe they don’t even understand what happens because all this yucky hard happens at home. Maybe they are clueless to the effects of such a procedure. I want to punch someone in the face and make them suffer. I want to call someone awful names and be rude and nasty to compensate for the hurt and frustration I feel in my own heart over this. Yet I know that wouldn’t solve anything. I know being mean and ugly isn’t productive at all. But we parents are a protective bunch. We put our fighting gloves on and get ready to pounce on the first person who even remotely appears to harm our children.

But I know as the saying says, this too shall pass. It’s just getting through the hard to the routine. It’s getting from the volatile emotions to the place of acceptance. And maybe my emotions are not even so much just about this procedure. Maybe they are also a bit of grief over a failing body. Maybe they are simply sadness and longing for a life we weren’t given. A longing for a healthy, easy to care for body that works just as God created it to work. But that’s not what Ryan got. It’s not what the Lord handed him. His body is failing. It’s broken. It’s fragile. And I don’t like it. Not one bit. I don’t want this hard.

I just want relief from the pain. I want escape from the sorrow. I want peace instead of stress and worry. I can’t change my circumstances. I know in my heart this will be worth it in a few weeks. But getting from this hard, this unbearably difficult hard, is tearing me to pieces. Somewhere in all this is the ability to simply say his name. Jesus. Jesus. Jesus. I don’t feel him near. I don’t see his healing. I don’t get his plan. But I see the rest in my sleeping child and I know Jesus is holding Ryan in his arms. And I thank God over and over that sleep can come. The escape from the hard. The rest and healing Ryan’s body so desperately needs.

Please pray with us and for us. I look back to Ryan’s four brain surgeries and remember being so shocked he wasn’t in more pain. I thought this wouldn’t be as bad as those invasive, risky, intense procedures. But this has turned out to be far worse. So please pray for us during these difficult days. We covet your prayers and trust the Lord is listening. Ryan needs healing. Surely God already knows.

I won’t lie. It was a very emotionally exhausting day today. I’m sure most of you have been through a situation when you were told one thing but then experienced something totally different. That was our day. We went into this surgery with the understanding the Chait tube would sit flush against Ryan’s belly and not stick out which isn’t at all what we are experiencing. The surgeon said this morning it only comes in two sizes – very small and big. Well the very small is for little kids so Ryan got the big one. When we voiced our concerns, the surgeon said hopefully when the stitches dissolve that are currently holding Ryan’s colon to his abdominal wall, the tube will fit a little tighter against his belly. We just worry about it getting caught and pulled out. Then the surgeon initially told us we would only have to do this procedure/flush once a day which should take about 20-40 minutes from beginning to end. Well that didn’t happen either because now he said we have to do it twice a day for two weeks. He was in to do the flush with several other doctors this morning and said we should have results in 2-4 hours since this was the first time. After 1 hr and 45 minutes, Ryan finally stooled and it went everywhere. Blow out is an understatement. So we thought that was the end of it but no, two hours later, we had a lake of stool all over the bed. It took five of us to clean him up, change the bedding and get him settled again. Travis and I were less than pleased and were on the edge of big, ugly tears mixed with frustration and anger. We even said we wished we hadn’t done this surgery and could go back in time and undo what we have done. After having a long talk with Ryan’s nurse, who was absolutely fabulous, she called the surgeon and came back in to tell us what he said. He apologized for not telling us how this initial flush would go because it’s the first clean out he has had. Think colonoscopy prep. Apparently it will take some time for Ryan’s colon to figure out exactly what we want it to do and eventually this should end up being a quick procedure that does not linger for four hours like it did today. My biggest frustration today was feeling like we were lied to. Like we were sold a beautiful car that turned into a lemon the minute we drove off the lot. Like leaving for a beautiful vacation to Hawaii but somehow ending up in an Iowa cornfield. In my mind I know this is a necessary intervention to compensate for the inability of Ryan’s colon to move things. But getting from point A to point B was not supposed to look like it does right now. It was supposed to be a slight incline with a few pot holes along the way, not a treacherous climb. These next few days, maybe the entire next two weeks, are going to be tough as we deal with this procedure twice a day, and the worst part is watching Ryan deal with the cramping from his rebellious colon that doesn’t like what we are doing to it.

None of us ever want to see our children suffer or deal with pain. And to watch our little one who does not understand what is happening to his body is a shearing pain ripping through our hearts. We know we did this for quality of life so he doesn’t have to face the ups and downs of constipation and painful stooling. But getting from here to there is a longer, hotter, more exhausting road than we anticipated. The emotional drain has rendered us crabby and critical of each other. As most married people do, we have taken our frustrations out on each other today. Thankfully we’ve been through enough stress in our days to know this will pass and more peaceful moments are coming. Thank God for grace and forgiveness, both essential in a good partnership. I’m grateful for the next two and a half weeks before school starts so we can attempt to get Ryan’s body into a more acceptable routine with this. Sometimes it’s hard to focus on the long term goal and beauty that lies ahead instead of looking at the hard directly in front of us today.

We know in our hearts we only did this for Ryan’s quality of life. To reduce pain and discomfort in a weakening body. But to get there, we have to get through the next couple of weeks which will be challenging and emotional. I am certain the results will be worth the temporary pain. Like so many goals, we have to get through the hardship to enjoy the satisfaction of our hard work. There is no giving up in life or with doing everything we can to make Ryan comfortable and content. And eventually this procedure will do just that. We simply went in to this with a different idea of how things would play out. It’s a new normal, but right now, not a pleasant one by any stretch.

Ryan is doing OK otherwise. He is completely exhausted and has slept the entire day. He hasn’t eaten anything by mouth nor has he even attempted to walk. He can barely keep his eyes open and has been lying on the couch since we got home around 2:45 this afternoon. I’m thankful for the strong pain medication we can give him, and he does not seem to be in any pain unless he is changing positions. Best of all, we have avoided his bowels shutting down which is what we have been praying for so hopefully that will not shut down in the coming days. Thank you for your prayers and support. We are blessed with the most amazing friends and family and don’t take any of you for granted. Your prayers and encouragement are precious to our hearts and healing to our souls.

Ryan slept OK last night and is very sleepy this morning. The surgeon was here at 8 and put 60 cc’s of glycerin and saline in his Chait tube (the cecostomy button). He still hasn’t pooped but has tolerated the fluid and it’s been an hour already with no results which is a lot longer than the doctor thought it would take. This is truly a guessing game trying to find the right amount of fluid to use. If we don’t have good results this morning we can’t go home today. Time will tell I guess. His tummy is doing OK with no gagging or vomiting, and he has tolerated his tube feelings which is a blessing. He won’t eat any solid food by mouth but that doesn’t surprise us.

It was nice to have my dad and stepmom here during surgery. It made the time go faster as we waited and they stuck around to see the other kids. We let Brad drive up yesterday and he did just fine. All three kids were glad to see their brother, and I’m sure if Ryan could talk he would say the same about them. It’s one thing to hear on the phone that he is OK after surgery, and a completely different thing to see with your own eyes. Then our very dear friends Joe and Candy came up and stayed with us for a few hours. They are like family and always a lot of fun.

Thank you so much for all your prayers and sweet notes. Once again, God has been good and we relish the blessing of his faithfulness. I’ll update again in a few hours.

I just talk to the surgeon and everything went well. I will be going back to recovery soon to be with Ryan and then we will head up stairs. Now we just have to wait and pray that his bowels don’t stop and there are no problems with an ileus.

Our morning did not start out well. Ryan had to have his meds before 6 a.m. on an empty stomach. He ended up with a lot of retching, gagging and dry heaves.  Thankfully it stopped before we got to the hospital. We’ve seen the surgeon and the anesthesiologist, and Ryan will be going back shortly. We will update as soon as he is out of surgery which should be about an hour. Thank you for your prayers!

Three weeks from today, Sidney will be navigating the halls of Southeast with all the other freshman as they try to figure out where all their classes are. I love how they do things here – only the freshman attend school on the first day. It’s intimidating enough to start high school and to be able to find your classes without the embarrassment of feeling lost in front of a bunch of upper classman is a relief. Of course, she is not at all nervous about starting this new chapter; in fact, she is very excited. But with an older brother and all his friends who have gone before her, she kind of knows what to expect. Trevor gets to be the top dog this year in junior high and is pretty ambivalent about school starting. He’s always been very smart and doesn’t have to work hard to get straight A’s. Ryan starts junior high too which is nerve wracking for all of us because we are so protective of him. I’m sure it will all be fine but the change is tough on the emotions plus we have to start at zero and build up trust with the staff and that takes time. At least Trevor will be there to keep an eye on him! And Brad is now a junior which seems impossible.

I’ve been filling out the mountains of paperwork it takes to get all the kids into school every fall and organizing our lives for the next few months. It’s going to be VERY busy with three football games and a volleyball game every week on top of practices, homework and everything else. But I realize our years with the teenagers are precious and passing quickly so I plan to enjoy every game, event and activity, no matter how busy that makes us. These years are fun!

The kids are busy as ever and enjoying these last few weeks of summer. Sidney has been detasseling several days a week which is exhausting, but she sure likes the money. She and Travis are flying to Idaho soon for a week with Travis’s brother and his family. The two of them have gone before and had a blast boating and relaxing. They live in the mountains of northern Idaho which is breathtaking, and I’m quite jealous I don’t get to go too. I am certain this will be another fabulous trip!

This week is starting off with a bang; thank God Brad can drive! Between yesterday and today, there are six doctor appointments on the calendar! Sports physicals, pre op physical, dermatologist, chiropractor, dentist. And add that to strength conditioning, football camp, swimming and golf, and we’ve got some pretty jam packed days. Ryan’s cecostomy surgery is at 10 am tomorrow at Children’s so we will need to leave the house pretty early to get there by 8. I didn’t sleep well last night tossing and turning because my mind wouldn’t shut off thinking about how this is going to change our nightly routine. Sometimes we can be so resistant to change, can’t we?! But like all things, this will soon be our new normal, and we won’t even give it much thought.

Please pray with us for safety and quick healing. I can walk through the day knowing God is already ahead of us. He is Jehovah Shammah, the Lord is there, one of my favorite names for God.

Jehovah-shammah. THE LORD IS THERE! Our God is already in your tomorrow. He already knows what your future looks like, and He has complete control over it. We are told in Jeremiah 29:11 that Jehovah-shammah says, “For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope”. THE LORD IS THERE! You cannot be in your future now, but He can. You can’t control the future events of your life, but He can. Jehovah-shammah will walk with you into whatever tomorrow holds because of His great love for you. God is THERE in your tomorrow and in my tomorrow. He simply desires that we trust His heart.

Ryan will be hospitalized overnight, but please pray he is able to hold down his formula post op. He has a history of tummy and bowel problems after going under general anesthesia and this last surgery was the worst. After the last brain surgery he was on TPN because his entire GI system shut down from his stomach to his rectum. That was not fun at all! He spent five days in the hospital after his corpus callosotomy and did throw up while there but was sent home as the doctors thought he just had a tummy bug. Within several hours we were in the ER and sent home. Eight hours later we were back in the ER again and he was admitted here in Lincoln for over a week. He was sent home and within 24 hrs was in the doctor’s office where we waited for Children’s Hospital to send their ambulance down to pick him up and take him to Omaha. He then spent two weeks hospitalized there on TPN for malnutrition, gastroparesis and an ileus. He had surgery to put a G/J tube in (instead of just a G tube) and went home on 24 hr a day tube feedings bypassing his stomach which was still not working. It was not a fun, month long adventure. And we certainly don’t want a repeat of any of it.

I will keep you all updated tomorrow. Thanks for your prayers! You are loved!

The date of Ryan’s next surgery is slowly creeping closer and closer.  And once again, grief paces itself with the approaching procedure.  The calendar flips from one day to the next with the gap from here to surgery getting smaller and smaller.  But with each passing day, the grief gets bigger and bigger.  It fills my heart with sorrow.  It overtakes my thoughts like a low, dense fog I can barely see through. My arms push and shove to clear it out, yet it doesn’t budge.  It clouds my judgment and opens the door inviting worry into my heart.  Ryan has had eight surgeries and every one of them was to fix something, to help him improve and develop and have a chance at gaining ground developmentally.  But today, as I look to the horizon and wait for the sun to rise five more times before we head east, today, it just feels different.  Today we plan for a surgery necessary because Ryan’s body is failing him.  Failing at something that should be so simple.  Failing at an essential function most people barely give notice to.  Failing in a cascading effect of unknowns.  And my heart can barely contain the sorrow.  My strength is too weak to stop the tears.  My mind is too overtaken with grief to stop the heaviness bearing down on my strength.  It is one thing to know in my head Ryan’s body is weakening.  It is another thing to send him to surgery to place a manmade button in his abdomen to do a job his body is supposed to be able to do on its own.  To know from now on, for every single day he has breath, it will take the care and actions of another to force Ryan’s body to stool. Because his body has failed him.

I’m just not ready to face the next thing.  I’m not prepared to take it in.  I don’t feel strong enough to figure this out.  Making a new evening routine, finding the right amount of fluid, trying so very hard to get Ryan to cooperate and sit still for 20 minutes or however long it’s going to take to flush his GI system.  It’s going to be a huge change for us.  It’s going to take a while to figure his body out.  It’s going to take patience and care.  I’m just not ready. Oh, I can hook up a tube, flush a mixture of fluids, wait for results, clean Ryan up.  That’s easy.  I’ve done much worse in my day.  But I’m just not ready for the next thing.  I’m not ready for the losing to become so real.  This surgery isn’t just going to sleep and putting a tube in Ryan’s intestine.  I wish it was that simple.  No, the losing is in the failing of the body.  The losing is in the fading of the mind.  The losing is in the fading of his strength.

Last night I sat on the couch watching TV as Sidney and I chatted about life.  And as I looked over at Ryan and our eyes met, he lifted his arm and extended his hand out to me.  He couldn’t tell me with his voice, but he told me with his eyes.  He wanted me near.  He wanted my warmth and my touch.  He needed his momma to cuddle.  And so we did just that.  I held him tight. I told him my secrets.  I told him of my love.  I told him as best I could all my heart feels for him.  And just as his brain doesn’t allow his voice to be heard and express his thoughts, my voice wasn’t capable of telling him all my heart holds to be so true.  There is an emotion like no other when a person gets to love a little one slipping away.  There is a pain weaving through the fabric of time and space without description or reason.  There is a fear of future planning and a sorrow for all things lost.  I don’t know how two conflicting emotions can share space as they do.  For the love is as vibrant as the sorrow is dark.  They dance together in matchless rhyme and rhythm.  Such conflicting and yet perfectly paired partners.

As my phone rang and the nurse and I played twenty questions preparing for the surgery day, I recalled medications, doses, surgery dates, complications, answered the other endless questions about illness and when he can eat and drink, talked about the details of surgery.  And then the words came I had to confirm.  The talking of diagnoses.  To hear another say the words and know they exist on the chart with my boy’s name typed at the top – cerebral atrophy and developmental regression.  I know these to be truth.  I know the failing of development.  I know the rejection of growth.  But to hear another speak those words.  To give them power.  It struck me in my gut.  It caused my breath to be taken from me.  It made me shudder like a cool, crisp breeze that catches me off guard.  I wasn’t ready to hear those words.  I didn’t want them to be said.  Because even though they are my secrets I tuck in my soul, I don’t want to hear them from someone else’s lips.  They are given life when spoken and confirmed by another.  And the grief wells, the sorrow overflows, the tears spill.  Because I can’t keep losing the boy.  I can’t face the stealing of life.  I can’t keep giving the pieces I’m grasping so tightly.  I’m afraid of what is coming.  I’m desperately afraid.

And then I think of eternity.  I see my boy running and yelling and laughing and playing.  I see jumping and throwing and kicking and catching.  I see energy and boundless chatter.  I hear him yelling our names.  Daddy!  Mommy!  Brad!  Sidney!  Trevor! I love you! And that’s what I look forward to when the fear comes. The day when the special needs are stripped away.  The moment when the healing comes. The mercy of renewal.  Because I have eternity.  Because Ryan has eternity.  Together we have Jesus.  Together, as a family, we face the coming of every tomorrow knowing the fading will continue, the stealing of health will not stop.  Together, as a family, we excitedly talk about our days in Heaven.  And those days will far outnumber the days here full of sorrow and loss.  Because we have salvation.  We have souls full of Jesus.  We have the promise of better days.  We have all things eternal.  And that’s the hope I keep anchored to my heart.

Each day brings a constant dance of joy and sorrow.  The filling and emptying of a momma’s heart.  The hope and fear competing for first place.  So many things might go wrong.  But so many things might go right too.  We don’t know our tomorrows.  But God does.  As I struggle alone through grief, as I lead my older three through worry, as I hold my man through yet another stressful moment,  I can’t help but let my mind wander to the things I know to be true.

He will cover you with his feathers and under His wings will you take refuge; His faithfulness will be your shield and rampart ~ Psalm 91:4

My eyes are ever on the Lord, for only He will release my feet from the snare ~ Psalm 25:15

Even to your old age and gray hairs, I am He, I am He who will sustain you.  I have made you and I will carry you; I will sustain you and I will rescue you ~ Isaiah 46:4

Faith is confidence in what we hope for and assurance about what we do not see ~ Hebrews 11:1

And my favorite I claim for my sweet Ryan – Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him ~ James 1:12

~ 16 years, 7 months and 3 days ~  That’s a long time to be changing diapers.  Wet diapers, dirty diapers, saggy diapers, pull ups, swim diapers.  You name it, I’ve changed it.  Too many times to count.  But for over 16 1/2 years now, we’ve never had a break from diapers.  OK I take that back.  To be exact, we had four months off from our poopy diaper days when Trevor day and night potty trained in a two day period before Ryan was born (yep, two days!).  To be really honest, I don’t think much about how many diapers I’ve changed.  It’s mechanical, routine, thoughtless.  Just a part of my day as much as brushing my teeth or making breakfast is.  But on days like today, I just want a break.  I want to hear my kid yell “Mom!  I need toilet paper!”  I do not want to hear what I heard tonight – “Mom!  Ryan pooped and it’s all over the door knob!”  Yes, Ryan pooped and decided to scratch his rear which meant that as he tried repeatedly to wiggle the door knob and free the door so he could come upstairs, inevitably to tell me with his facial expression that he pooped, he got stinky, gross poop all over the wall, the door, the knob, my clothes, his clothes, my arm.  It was just a blast.  I wanted to burst into tears, but as I yelled at Trevor to run upstairs and grab some wipes, I found him instead running to the bathroom where he stood over the toilet repeatedly gagging from the sight of his brother’s unfortunate mishap.  And I found myself saying mean things.  Yelling at my innocent boy who certainly did not understand the mess he had made saying “stop scratching your a**!”  and “knock it off Ryan!  You have sh** everywhere”.  And I yelled those things impatiently more than a few times. It didn’t help us get from messy to clean any faster.  My choice of words were not nice things to yell at a boy who had no idea what he had done or why it is wrong to put your hand down your dirty diaper even if your butt does itch.  Really, who can resist scratching an itchy rear?  I hated having to pull my gagging child out of the bathroom to run upstairs for wipes so I could get the mess upstairs to the bathtub, ranting all the way how gross he was, how much poop I was getting all over me.  My frustration bubbled out like a boiling pot of water.  His big, cumbersome braces and shoes that give structure and security to weakened ankles and feet were in my way and the cause of even more grumbling.  Yet he patiently looked around and waited for me to get him undressed, mess and all, as if he had not a care in the world.  And as he happily sat criss cross in the tub enjoying the warm water flowing down his dirty arms, I crumbled into a hot mess of frustration and grief.  My tears gave way to the unleashing of all things selfish.  All I wanted was to see the last ten minutes of Love It Or List It.  I wanted to know if the couple with the cute little boy and pregnant with twins was going to stay in the too small house or move to something new and bigger and a bit farther away from downtown than the husband desired.  I wanted to see the new basement with its playroom and fancy, new bathroom.  I wanted to know how the story ended.  But I couldn’t.  Because my poopy mess of innocence needed help to the tub.  My 13 yr old needed to run from the stink and grossness of it all.  And I simply sought to have my way.  I wanted my ten minutes of the end of the story.  I was mere minutes from running around the house preparing clothes for work and my morning trip to the gym.  I was ready to sort pills and mix formula with the laxative and tidy the kitchen and find a snack and chat with Trevor.  But I wanted it in my time.  I wanted to be selfish. I wanted ten more minutes.  And trying to get a poop covered 100 pound little boy who was clueless to his actions upstairs into the bathroom wasn’t a part of my Love It Or List It, get everything ready for tomorrow time line.

But life works that way.  Plans fall apart.  Events come crashing in and steal us away from our focus.  Stink invades our sweet calm.  Messy shreds apart our order.  Ugly overpowers our control.  But then grace shows up.  Love pours out.  Rational thoughts return.  Calm is restored.  Just like the warm, relaxing bath washed Ryan clean, God’s forgiveness and grace swept over me and brought renewed strength and focus.

Thankfully they don’t come often, but some days I simply don’t want to be the mom of a baby in a big boy body.  I don’t want to change diapers and scrub hair and body parts during bath time.  I don’t want to prepare food and organize pills.  I don’t want to change clothes and put cumbersome braces on legs.  I don’t want to constantly be on guard because of seizures and the lack of safety knowledge.  But without poopy diapers and sweet innocent expressions of I-have-no-idea-what’s-going-on, this wouldn’t be the life God called me to.  It wouldn’t be my story.  It wouldn’t be God’s story of provision and patience and peace.  My mission isn’t about selfishness over trivial things that really don’t matter in the long haul. Will I really care if they loved it or listed it when I fall into bed at night?  Instead, my mission is to give all the energy and love and devotion to my little ones, my husband.  My mission is to accept with grace the life God has given me.  My mission is to embrace the messy, stinky ugly with as much acceptance as I embrace the goodness with.  If I have to change crinkly diapers over and over for the rest of Ryan’s days, I’ll do it with a servant’s heart because he is a gift. Because my ultimate mission is to glorify God in all things.  But I still won’t like the poopy ones.

This has been an abnormal week for us. It’s been quiet and low key. Not really my tempo. We all seem to dance to the rhythm of noise, doors slamming, shoes left in the entry way, the chatter and laughter of friends, the unending piles of dishes, the sour smells of sweaty clothes. And with the boys gone, we are off tune, out of sync. They are having a fabulous time with my sister, brother in law and their amazing boy cousins. But life does not move at our expected pace when they are gone. My heart is full of thankfulness for this wonderful opportunity for my boys to go, see, experience and taste the East Coast. They have traveled the Metro, rode in a cab, taken in the monuments of DC, closed their eyes in a Hershey, PA, hotel, spent their energy at Hershey Park, tasted DC food, watched the Nationals play ball and relished in the company of their far away family. And there are still moments to be had before they travel home on Friday just in time to blow things up with their friends. These are moments forever embedded in hearts, tucked away in the corners of their memories. A blessing to be had; my heart is full for my boys, for all four of my sweetly loved boys.

Yet with their excitement, soaking in the fun of a different piece of the US, lies a sadness and grief over the death of Blake. This beautiful soul, one Brad has walked with since kindergarten, will be remembered tomorrow by many. How does one pack the adventures and beauty of a 16 year old life into mere moments of togetherness and adequately share a life lost too soon? I’ve seen such sadness lingering in the eyes of lost friends who gather daily in the home next to ours. Such grief expressed in the shrugged shoulders and downcast eyes. Confusion in learning to process death. These boys are too young. Too inexperienced. Too innocent. Yet sorrow is shared. Love is embraced. Memories under tight grasp. As life brings sudden pain, it’s the circle of life none want to face, yet all must behold. My heart has been full, in the crevices of sorrow, as I daily watch the unity of like minded boys, falling into place at the gathering place beyond the shared grass and lofty trees where Blake’s best friend lies down in sleep every night. My heart is torn wishing Brad was here to experience the loss and remembering but also grateful for the sparing of the pain replaced by the distraction of a week with loving family.

In shared sorrow and fresh fallen tears, I reminded Brad of the opportunity to share Christ with hurting hearts. Reminders of placing faith in the One who holds our every tomorrow. Only He knows our last moments here. Who says in Proverbs 16:9 ~ A man’s heart plans his way, but the LORD determines his steps.

There is a no such thing as the right time to travel from here to eternity. Either too young or too old. Too quickly or too slowly. The center of the loss is the pain in remembering and yearning for one more touch, one more I love you, one more laugh, one more smell, one more kiss. Just one more treasured moment. Yet the beauty is the truth of eternity for those who believe. The refreshment of the span of eternity to spend with those we love, living in the light of Jesus. The mercy of healing and peace and perfection. The day is coming for all of us. Grief steals our remembering that this life is so very short in comparison to our eternal home and the eternal moments together.

I find my own familiar thoughts wandering through fear. Down the paths of doubt and frustration and anticipated loss. The creation of moments not yet come. Of my Ryan moving on to Jesus. The days of weakness are here. The energy to walk diminishing. The muscles of solid legs and disabled ankles failing. Crawling is becoming his preferred mode of getting here and there in our home more than I want to admit. To see the redness and blisters because of weakening legs is heart wrenching. Plastic, man made braces can only do so much to support weakened legs trying to support and stable a growing body. My heart fears the coming tomorrows and how much more will be stolen. Watching my boy eat has become a stress. Hovering over a possible choking spell, waiting for repeated swallowing to get the food down, making sure the bites are small, the pieces soft. The movement of the large intestine is gone.  Fear of losing that movement in the throat is fierce.  The curving of the spine and drooping head are constant reminders of fading. And the all too familiar seizures are relentless. My heart can hardly contain the sorrow as the grief I fervently try to diminish comes creeping up. It bubbles and breaks the peace in our home. Yet in the fading health and feeble body is a strength of character, a beauty of God’s glory wrapped in the shell of a deeply broken, beautifully loved, unwaveringly accepted little boy whom I am privileged to call my son. No matter the number of his days, no matter the span of moments from here to Jesus, he will be cared for, wrapped in kisses, cherished in laughter and assurances of love. The remembering of God determining Ryan’s steps with the hope of eternity because of salvation is enough. Enough to keep me moving. To grasp hope. To hang on to the goodness of today.

Life is fragile. Much too fragile. The beauty is in the grace of our moments together, cherishing love and living as if ever day were our last together. None of us is promised tomorrow. Not Blake, not Ryan, not any of us. Yet our Heaven is coming. Praise God for good things to come!

Travis and I took Ryan to Children’s today to see the pediatric surgeon about putting in a cecostomy. I talked about this a few posts back, but for those of you who missed it, here is a quick overview again. Ryan has had a very hard time stooling for quite some time, and it seems to be getting worse even though we’ve been playing around with medications to try to make things easier. The GI doctor thinks because his skeletal muscles are getting weaker that his smooth muscles are following suit which is normal. That simply means the peristalsis in his intestines is not working anymore. So…we are having this simple surgical procedure done. It is like a car wash for the colon where we will flush fluid into the tube every night and as a result it will wash everything out of his colon in a 10-20 minute period. This will give Ryan better quality of life so he doesn’t have pain when trying to stool anymore which happened frequently even when his stools are very soft. It will also allow us to take him off some medications and keep him comfortable.

His surgery will be on Wednesday, July 23rd at Children’s, and he will spend the night. It will be laparoscopic so hopefully everything will go smoothly. I worry every time he goes under general anesthesia because he is very prone to bowel obstructions, but he is in the Lord’s hands and I’m not going to spend my time thinking about the what if’s. Travis and I are both doing just fine because this isn’t major surgery and is being done to improve his quality of life so it’s worth it. I think we both dealt with the fact Ryan is getting weaker and this is just another thing failing him. As I always say, this is our new normal, and the cecostomy will simply be a part of that. I can’t do anything about where we are so I’ll choose to be thankful for everything that is going right and not focus on the negatives.

On a sad note, early this morning I found out one of Brad’s friends died in a car accident late last night. Blake and Brad went to school together since kindergarten but are at different high schools. He isn’t one of Brad’s close friends, but that really doesn’t matter as some of Blake’s best friends are also some of Brad’s best friends. He died in a single vehicle accident and his family and friends need a lot of prayer. I’m certain the days and weeks and months ahead will be very tough. There are no words to make sense of this tragedy, but ultimately there is no choice but to trust God’s divine plan. This has been a really tough reminder to give my kids a hug and make sure we are on good terms before they leave the house. No one knows when it will be the final goodbye here on earth. My heart hurts for this family. Please pray for them as God brings them to mind.

Have a blessed day! Much love to each of you.

The kids are enjoying their summer spending loads of time with their friends as it should be. I have told them more than once, “you are kids and your job is to simply enjoy your freedom and your friends”. They have chores and take turns taking care of Ryan when Travis has something to do during the day or when we are both gone, but their main responsibility over the summer is to have fun and be with their favorites. They have the rest of their lives to be responsible, and I want them to soak up these teen years with laughter, friends, lazy days and making memories. There have been many trips to the pool and the golf course, and the oldest two continue to spend their fair share of time in the weight room at school training for fall.

Travis and I had our 20th anniversary last week; we celebrated by taking the kids to Red Robin. It makes me laugh how we spend our anniversaries now that we have kids, but it was actually really fun to enjoy a meal as a family and talk about the old days. Now that the kids are older, they actually appreciate our love story and commitment to each other. There is always a comfort when you see your parents in love, enjoying each other and celebrating the worn path of bumps, crazy turns and much earned victories. My heart will never be able to verbally express the thankfulness I have for the commitment Travis and I are able to share together. God has been so very good to see us through the years. And to celebrate it with our children was a blessing.

Ryan is doing OK. He appears happy, content, spoiled. Just how it should be! We continue to struggle with getting his GI system balanced and regulated which remains frustrating. On Thursday we have the appointment with the pediatric surgeon and will finalize the next step. I’m not looking forward to that talk as it will inevitably bring up a storm of emotions. I should be used to this by now but every change to Ryan’s health brings a fresh course of grief. And in due time this next season will be our new normal, just as it always has in the past. I have noticed him crawling more recently. Maybe it’s just a silly phase he is going through, but it concerns me as we know he is getting weaker. Ever so slowly, but weaker is the name of the game these days. He also seems to choke a little more so we have to really watch him when he is eating. He seems to struggle with some of the meat he used to be able to eat, and when he eats chips (Doritos are a new favorite) we have to be very careful to break them into small pieces or he can struggle. It just makes me sad, darn it! I’m afraid of the day that I know will eventually come when he can’t eat at all anymore. But worry about what hasn’t come yet does me absolutely no good and only drains me of the joy and energy I get for today. The comfortable truth I know in the deepest crevices of my soul says Ryan is in the Lord’s hands and me worrying about anything in the future is not what I should be spending my energy on. God’s got it all under control. Trusting in His perfect, divine plan is really the best – and only – way to deal with all this. I have a happy little boy who is my joy so for today I will celebrate all Ryan is!

There’s far more here than meets the eye. The things we see now are here today, gone tomorrow. But the things we can’t see now will last forever. ~ 2 Corinthians 4:18 (MSG)

I love the reminder this verse gives because this life is temporary. Our real home is with Jesus. But how quickly we jump on the worry bandwagon and take a ride down Fretting Lane. In the big picture, these struggles and difficulties and the pain and fear of what is to come are not what the Lord wants us to be focusing on. I can so easily get caught up in all the “what if’s” with Ryan’s health. And with the older kids I can really go crazy thinking of all the bad things that haven’t and most likely will not happen. All the poor choices the kids can make over the next few years, someone close to me dying, losing a job or the house or getting an ugly medical diagnosis. I can worry all day long but the only thing it does is force me to lose my focus on what is important and that is Christ. Looking at this life from an eternal perspective means all of our accomplishments in a high GPA, success at work, having the right possessions or clothes or friends, raising kids who make all the right decisions are meaningless. It’s all temporary yet we can all so quickly slide into the wrong focus. These last few weeks I’ve really worked hard to keep my focus on Jesus, on eternity and the things I will take with me when I’m gone. It can be a real feat to keep my focus on all the things that really do count instead of the things that are temporary and truly insignificant. I am really looking forward to the day when we get to be with Jesus. This world continues to bring nothing but contempt, hatred, indifference, inequality and the acceptance of everything immoral. And the Bible says this is exactly what is to come. Yet we have the hope of eternity to cling to. What a gift! There are brighter days ahead. Perfect days of joyful reunions and finally seeing our Savior face to face. I’ll take this temporary life anticipating the perfect place ahead!

Carrie Underwood has a song called “Temporary Home” and I love the chorus ~
This is my temporary home, it’s not where I belong
Windows and rooms that I’m passing through
This was just a stop on the way to where I’m going
I’m not afraid because I know
This was my temporary home

Here are a few of the pictures from our Make A Wish trip to the Florida Keys. They turned out great! Thankfully there is nothing new to share with you all. The kids are staying busy with friends and sports. Ryan has not changed and seems to be adjusting to his lazy summer days. But if I got to sleep in every day, I’d be pretty happy too!

Summer is in full swing which means constant sleepovers, late night fires, gooey s’mores and wet swimming suits. It’s hard to believe the kids have only been out of school for five days as it seems like much longer already. We are still in planning mode trying to get the older two into some specialized one on one sports training, private golf lessons for Brad and possibly a golf league for Trevor. Ryan is just doing his usual OT and PT every week and enjoying being able to sleep as much as he wants or needs.

This morning Travis and I headed to Omaha with Ryan for an appointment with his old GI doctor who moved to a new practice. I can’t tell you how glad I was to get her opinion and expertise on everything we are facing with Ryan. These past few months were painful dealing with the old clinic which I am not fond of. Let’s just say I have high expectations, and I’m sure some of that is because I am a nurse and know what kind of care we should be receiving. So when someone tells me something I know isn’t right or takes too long to return a phone call or give us results, my patience wears very thin.

I think you all know we had a precarious couple of weeks before our Make a Wish trip when Ryan wasn’t pooping, was gagging, occasionally throwing up and very lethargic. We nearly cancelled our trip and put him in the hospital just a few days before we were scheduled to leave. God was so faithful to see us through and grant us an amazing time together; it was a trip we will all cherish for a lifetime. When we came home Ryan went right back to his constipation issues and is again having lots of problems.

After explaining everything to the doctor, she confirmed what we already suspected – Ryan’s intestines are not working. He has dysmotility which is basically that the peristalsis to move food/stool through his GI tract is not effective. He is losing strength systemically and has been for some time. Anyone who sees him frequently knows he is getting weaker. He falls more, is more flaccid, can’t hold his head up for very long and is almost always slumped forward. If his head is up, his pelvis is shifted so he isn’t sitting on his butt but instead is leaning on his lumbar spine. Eventually he will have a hard time swallowing food and will start choking. With the skeletal muscle weakness comes smooth muscle weakness; these are the muscles that contract the hollow organs (blood vessels, the gastrointestinal tract, the bladder and uterus). Because we don’t know what is wrong with Ryan and do not have a definitive diagnosis (and never will) we have no idea what is going on in his body and have to treat him according to his symptoms anticipating what is coming next. We have always said there are only two things we care about with Ryan: 1. for him to be happy and 2. for him to be pain free. As long as those two goals are met, Travis and I are OK. So in discussing our options, this is what she presented us with:

1. Travel to Cincinnatti for some invasive testing to see if there is a specific area where Ryan’s colon isn’t moving and possibly face a resection of that area if needed.
2. Travel to Cincinnatti for a week of training to learn how to correctly and effectively give daily enemas. Cincinnatti Children’s has a world renowned GI clinic with specialized equipment, testing and physicians not available in Nebraska.
3. See a surgeon at Children’s in Omaha and discuss having surgery to put in a cecostomy.
4. Play with his Miralax and Senna doses and keep upping them until Ryan is stooling every day or two.

This was a very emotional appointment, but a much needed discussion at this point. I came home with a migraine from the emotional stress, but I was so happy at the same time to know we have options and a physician who wants the very best for Ryan and who supports our choices. She was so empathetic and even teared up when I was crying. For now, we are doubling his Miralax so he will now take four adult doses a day, and we are doubling his Senna dose as well. At this point, even with all the meds we give him daily, he hasn’t pooped for five days. He simply isn’t moving anything in his intestines. And with that dysmotility comes the risk of major infection, obstructions that require surgical intervention and lots of pain often with vomiting. Something has to be done to keep him comfortable and prepare for the next step of weakness when it comes. It’s a new normal. Again.

Travis and I have decided to increase his medications but also pursue the surgical route at Children’s in Omaha; we will not be going out of state. I found this description on the internet and think it’s a pretty clear cut picture of what exactly a cecostomy is since I’m sure none of you have heard of it.

Cecostomy is a surgical procedure that is used to clear the bowels of fecal matter. It’s typically used for children with fecal incontinence related to severe disorders. Fecal incontinence is the inability to control your bowels, which can involve symptoms ranging from severe constipation to having a bowel movement at an unexpected or embarrassing time.

Children with fecal incontinence often have severe constipation. In some cases, liquid fecal matter bypasses the solid fecal matter and leaks out, which can cause embarrassment and frustration for the child.

Cecostomy differs slightly from the traditional enema that is used to relieve constipation. An enema is given directly through the rectum to promote the release of fecal matter. But a cecostomy is known as an “antegrade enema.”

In the cecostomy, a tube (catheter) is used for the procedure. This catheter is inserted into the cecum, which is the first portion of the bowel, or large intestines. The cecum is located in the lower right abdomen. Liquid medication is injected into the cecum through this tube, which helps coax the fecal matter out of the body through the rectum.

As the doctor said, it’s like a daily car wash for the colon. I like that description. For some reason it makes me smile because it’s a vivid picture. I get it. The cecostomy tube looks much like the gastrostomy tube (Mic K button) Ryan has had on his upper left abdomen for seven years. It will be flush against his belly. Every morning or evening we will wash out his colon with saline or whatever fluid we are instructed to use. It is as simple as hooking up a bag of fluid to the opening, flowing it in by gravity then waiting for everything to come out the other end which usually takes about 20 minutes. It sounds overwhelming but I know it will be come our new normal, and we have had a lot of those over the years. If there is one thing we have learned, it’s how to be flexible and adaptive. Ryan is constantly changing and we have to change with him. We know our time with him is limited and the time we do have is slowly being taken from us. So if this is what it takes to keep him comfortable, happy and pain free, then it’s what we have to do. And honestly, I’d much rather learn to do this procedure every day then have to mess with increasing his medications all the time and praying his stomach doesn’t slow down causing us not to be able to get all the stool softeners in him. This is a much more reliable, safe way to handle his large intestine not working.

I am not going to pretend this has been an easy day or a quick decision. I’m an emotional mess because it has been a slap in the face. A reminder that Ryan’s health is declining. Sorrow. Fresh tears. An ache in my heart. Fear of the future. A longing for the days of old when we didn’t worry about how many days had passed between poops. Just a day when we didn’t have to talk about poop. But this is what we have. A new normal once again. Because this is what the Lord has given us for today. This is what captures our thoughts and overwhelms our hearts. Ryan is getting weaker and he cannot poop on his own anymore. It’s another loss. Another battle. Another worry. Another procedure to tuck into our day.

There was a season when seizures took over my thoughts. When all I saw was seizure after seizure after seizure. When I prayed and prayed for them to stop. Days when I could tell you exactly how many seizures attacked Ryan’s body. Lists of numbers for each day of the week. I used to plead with God for a medication to slow them down. And now the seizures have become a member of the family. They are a comfortable sight. A well worn part of our day. I don’t spend my time worrying about the seizure monster because now the seizures are familiar and expected. I gave up that fight and have accepted the damage they continue to do to Ryan’s brain. It makes me so very sad to admit it. But in its place is the weakness I am struggling to face, unable to accept. I hate looking over at my son and seeing a slumped, drooling little boy who can’t hold his head up. I long for the days of old when Ryan had the best posture of anyone in our family. Shoulders back, head held high. But those days are gone and in their place is a little boy who is slowing declining. And I can’t do anything to stop it. So I will spend my energy dedicated to keeping my baby safe and content and free of pain. I will love him, spoil him and cover him with kisses. He will hear the constant singing of I love you’s and never doubt the security of his momma’s arms. And at the end of the day, when darkness falls and quietness captures our home, I will lay my head on my pillow thanking God for another day. For the gift of more time. I don’t have any idea how many more tomorrows the Lord will bless us with to love on our boy. I pray there are many. More than I can count. No matter the number, no matter the span from here to eternity, my Ryan will know he is loved and wanted and accepted. This new normal isn’t ideal, but it’s all I’ve got. I will find the blessing and praise God for His provision in the changing seasons.

How do we say goodbye to eleven years? Eleven years of love and instruction and care. Eleven years of trusting all four of our children to the teachers and numerous other staff members at Humann Elementary. I will never forget the first day of kindergarten when we walked Brad up to the front doors of the building. I was seven months pregnant with Ryan and had a 3 yr old and a 2 yr old at my side. Fear ruled my heart as thoughts of second guessing our decision to put Brad in the public school system danced in my head (Travis and I both attended a Christian school growing up). And here we are all these years later walking away from a school where love abounds. A place where our children thrived, where wonderful, lasting friendships were made, where teachers cared and new experiences were discovered, where beautiful memories were weaved into the foundation of our children’s education. Sending them to Humann was the best decision we made. No regrets. Not a one.

How do we say goodbye to amazing people who have impacted our lives? Turning to walk out the door after handing Ryan off to his para for the past seven years has been a measure of trust. And trust does not come easily or quickly when you have a fragile child who has constant seizures and is vulnerable in every way. Trust on those hard days when Ryan can barely stand because his equilibrium is off…again. Trust when the seizures are attacking with a vengeance and Ryan is drooling excessively and can barely hold his head up. Trust when his tummy is off and we are fearful of another hospitalization. Trust when he just had three massive brain surgeries and the freshly implanted plates and screws in his head are holding a partially healed skull together. Trust that in his vulnerability and inability to speak, he will be safe and secure where no one could possibly violate his innocence. Day after day, year after year, the staff at Humann has been amazing. They have walked with us through the worst. Ryan’s first day in the preschool room was full of crying, screaming, head banging, putting him in his jogger stroller facing the wall with a blanket over the top. All because he could not handle the adjustment of being in a new place. We had many days like that. There were years of Ryan wearing a helmet because of his excessive head banging. And every day he was safe. The staff never gave up on Ryan. Through our tears, through our fears and frustrations, they remained faithful to love and care for him. They were patient and loving. And those amazing traits were present in every para and teacher who invested in Ryan’s life. Through all the hospitalizations, the four brain surgeries, the therapies and doctor appointments and missed school days because the seizures attacked. Through all the ups and downs, the prayers, the caring notes, the hugs and smiles and tears always showed up from staff. They walked through the worst of the worst with us and celebrated new discoveries, little victories and every developmental gain no matter how small.

How do we say goodbye to acceptance? For the past several years, Ryan’s paras have taken him to younger classrooms and sat in the hall as students took turns reading him a story. They sat in chairs with Ryan by the librarian’s desk, listened and watched as the kids stopped to tell Ryan about the books they were checking out. Kids and staff have said hello and goodbye to Ryan every day. He is well known at Humann like a pair of worn, much loved, broken in slippers. He just fits. Ryan has not been “that kid” at Humann, the one who is different. He has just simply been Ryan. He is accepted just as he is. For the past two years at the end of every day, Ryan and Meschelle sit side by side in chairs and watch all the other kids walk out the front door, waiting for Travis or me to pick him up. It’s their spot, their well-known place to end another day of learning and exploring. Never have we experienced the friendship and love of a para as we have with Meschelle. I don’t know how to walk away tomorrow with my boy.

How do we say goodbye? We can’t. None of our children will attend Humann next year, but we will never forget the love each of us received from the staff inside those walls. Travis and I simply can’t put into words the emotions filling our hearts as this school year comes to a close. It may be time to start over, create a new home for Ryan with older kids and new staff, but we will never forget the beauty in our years at Humann. We can’t say goodbye to friends who love well, patiently accept and joyfully care for our sweet little boy. Closing this chapter in Ryan’s education is painfully difficult. But it must be done. So no goodbyes. Instead there will be many tears, big hugs and thankful love to share.

I have not stopped thanking God for you. I pray for you constantly, asking God, the glorious Father of our Lord Jesus Christ, to give you spiritual wisdom and insight so that you might grow in your knowledge of God. I pray that your hearts will be flooded with light so that you can understand the confident hope he has given to those he called—his holy people who are his rich and glorious inheritance. ~ Ephesians 1:16-18

Yesterday at the gym I ran into an old coworker from the ER and as we caught up on each other’s lives, we started talking about kids. She has a cute little boy who is 18 months old and smiled as she said “he is so naughty!” I smiled back remembering those years when the kids started to understand their independence and ability to make choices. We laughed about her son reaching out to touch something he was told not to and at the same time looking back at his mom to see her reaction. I remember those days vividly. Sometimes the constant watching and hovering was mentally wearing but those days slipped away so quickly. I know there are thousands of memories I was certain I would never forget that are now gone from my thoughts. But the days I do remember, those moments of frustration mixed in with the treasured days of beauty and heart warming interactions, are forever embedded in my heart. Because as the kids have grown, as their voices change, their stature gets taller and taller, their independence increases, the moments continue to occur when I realize just how big they are getting. With all the graduations happening around us as another school year comes to a close, I am keenly aware my days are numbered before my kids leave the security and love of our home to make their own way, venture out to find their own path. On one hand it’s so very sad to realize my babies will not all be living under my roof with me, but I also see the opportunities and blessings to come for them as they make their own way in the world. They will continue their education, take trips, fall in love, marry and have children of their own. My kids will always need me; it just changes from one season to the next. I have to focus on that so I don’t allow the tears to fall hot and fresh on my cheeks. As a mom, I don’t ever want my kids to stop needing me. And I realize they won’t. I still need my parents and in laws. I still run to my dad for advice or reassurance. I seek his input and guidance. I still find comfort sitting on my in laws couch talking about everything that keeps us busy and moving. And if my mom were still here, she would definitely be my closest ally in this parenting adventure. Time simply doesn’t stand still and I am learning to enjoy the beauty of each season. I can’t go back and redo the past, I can’t get the babies who fed from my breast again, I can’t take them for their first day of kindergarten or calm their fears the night before they started junior high. But I get to be present today. I get to love on them, engage them in conversation, share their hurts and tears, experience high school for the first time, talk about asking a girl out, stress over finals and big projects. I can help with friend issues and talk though the difficult questions of faith, situations in the media and choices others around them make. I get to watch my kids grow up, trusting the Lord to meet them in every step. Because every season of this parenting journey has its struggles and joys and I am certain that will never change no matter how old they get. The beauty is to find the good, experience whatever each day brings and always remember to thank God for every moment we get. Because some day my children may not wake up in their childhood bed, but they will always know the love of their parents. They will always be assured of our commitment to be here every day. They will always have an open door and loving arms to run into whenever they choose to come home. Because this home will always be their home no matter how old they are. For today, I’ll cherish the backpack thrown on the family room floor, the shoes kicked off in the entry way, the dishes left on the counter, the toothpaste dried to the side of the bathroom sink, the clothes covering the bedroom floor and the jacket hanging on the back of the kitchen chair. They are beautiful reminders that today is to be cherished. I have kids to love on, laugh with and enjoy. The tomorrows will come, but today is what really matters.

What a week it’s been. Just one of those seasons when bad news just keeps coming. And none of it even affects me or anyone in my immediate family on a personal level. But some of the people I care deeply about are hurting and that means I hurt too. I talked in the last post about dear friends affected by the tornados that rumbled through the area on Sunday night who lost their brother the next morning. And another family friend who just today found out the probably colon cancer is actually stage 4 with tumors in the abdomen and on the liver; she has an uphill battle before her. And an old friend from years past who is a single mom and just found out she doesn’t have a job anymore with no reasonable explanation to hold on to. And a family very close to my heart dealing with extended family issues that are painful, embarrassing and overwhelming. And another family whose 16 year old son committed suicide last night and was found by his mom. And my coworker who buried his only child today after his other son committed suicide just one short year ago. So much loss. Too much pain. Overwhelming grief. It’s easy to feel helpless and lost in the news of such disastrous circumstances. None of us can do anything to mend these broken hearts or ease the burdens they are facing. The only thing I can do, know to do, is pray. Plead my case before the throne of God and beg for mercy for each one of them. Even that feels helpless. Like it’s simply not enough. But it’s all I’ve got.

Even though loved ones are dying, the sun is faithful to rise tomorrow morning. Even though loss of health and financial stability show up to slap us in the face, time still marches on. Even though friends and family disappoint, there are those – children, spouse, coworkers – who still rely on us. Even though life brings unexpected turns and battles, there is life to be lived, breath to be exhaled and strength to be gained.

Just as Ecclesiastes 3 says (from The Message) ~

There’s an opportune time to do things, a right time for everything on the earth:
A right time for birth and another for death,
A right time to plant and another to reap,
A right time to kill and another to heal,
A right time to destroy and another to construct,
A right time to cry and another to laugh,
A right time to lament and another to cheer,
A right time to make love and another to abstain,
A right time to embrace and another to part,
A right time to search and another to count your losses,
A right time to hold on and another to let go,
A right time to rip out and another to mend,
A right time to shut up and another to speak up,
A right time to love and another to hate,
A right time to wage war and another to make peace.
But in the end, does it really make a difference what anyone does? I’ve had a good look at what God has given us to do—busywork, mostly. True, God made everything beautiful in itself and in its time—but he’s left us in the dark, so we can never know what God is up to, whether he’s coming or going. I’ve decided that there’s nothing better to do than go ahead and have a good time and get the most we can out of life. That’s it—eat, drink, and make the most of your job. It’s God’s gift. I’ve also concluded that whatever God does, that’s the way it’s going to be, always. No addition, no subtraction. God’s done it and that’s it. That’s so we’ll quit asking questions and simply worship in holy fear.
Whatever was, is.
Whatever will be, is.
That’s how it always is with God.

Not a one of us has the capability to determine our next step. We plan, we dream, we work hard to make the best life we can, give our kids the world, love deeply and share passionately. Yet it’s not enough to overcome the tragedy that befalls each of us. Because trouble comes. Death knocks. Pain sneaks in. Stress overwhelms. Loved ones disappoint. Yet at the end of the day, God is still present and will do as He wants. Because even in the bad, He is still good. It’s hard to see in the fog of crisis. Sometimes it’s completely impossible to take in. Yet His loving arms are outstretched to each of us. He’s here. Anyone who believes, who trusts, who knows personally the Father who gives the hope of eternity understands joy in the midst of trouble. Coming to the other side, being able to stand back, look around, see the hardship you trudge through no matter how messy and ugly it may be brings a revelation of His goodness and zealous love for us. It’s still hard when you are in the trenches. But eternity is coming. I can hardly wait.

My heart is heavy today with several people filling my thoughts. One is a coworker whose son was killed in a truck vs semi accident. This kind hearted man’s only other child died just 15 short months ago. How does one process losing both children in 15 months? Both his children are gone. I can barely wrap my mind around it, much less contain the heartache overflowing from a parent’s heart. Last night in the fury of the thunderstorms and tornados that hit our area, my best friend’s barn/garage/man cave was destroyed with significant damage to their vehicles and property. The house has some damage as well, but my friends came through the storm without injury. On top of the devastation and clean up to be done, this morning they received a dreaded call that the husband’s brother passed away. Simply too much to take in the next breath. Yesterday we received an email that a close friend of the family, who has supported Travis and me with cards, prayers and emails over the years, is preparing for a possible diagnosis of colon cancer this week. This is a godly woman whom I respect and look up to, who is always close with an encouraging note, a birthday card with confetti falling from the envelope, with a sweet smile, a long hug and the promises of believing prayers. And our sweet Ryan is struggling with his GI system once more. I’m waiting for a return call from the doctor to find out what we should do next in anticipation that his entire GI system may be shutting down again. It’s now been a month of worry, a month of trying new meds, a month of being off, a month of frustration with the specialist’s office staff.

In the midst of the searing pain my heart feels for so many I care about, there is a natural tendency to move toward negativity, to invite anger and disbelief to dance with my thoughts. Some days life feels very much like a long swim upstream against the natural flow of the bounding waters. It’s a fight to keep moving and believing good things are just around the bend, just a tad bit farther than my eyes allow me to see, to take in the next horizon, the next scene. It’s during these moments when my faith must kick in. When I must hold steadfast to the truth of God’s word. When my prayers must be firm, believing, trusting and frequent. I know God is good at all times, yet in the midst of pain, in the heartache of loss, in the turmoil of the unknown, it’s easy to stray. It’s easy to get caught up in the whys and the unknowns. It’s easy to allow anger and negativity to suffocate the trust, the good.

Years of experience tell me things happen for reasons we simply cannot understand at the time. In the midst of the storm, it is sometimes impossible to see the sunny days ahead or reflect on the beauty behind. Yet the track record of the Father I serve is one of good, of beauty, of provision. A few steps down the road the picture becomes clearer, the steadfast love of my Lord more evident, the pain and the disruption to daily routine a little acceptable. Because raw edges, unknown tomorrows, shearing pain and unfathomable circumstances are unfortunately a part of life. A part of God’s plan for us even when we can’t see the outcome or the big picture. For me, it comes down to a matter of trust, of strengthening my ability to do long suffering, of relying on others to care for me, of teaching me the hard lessons I would rather ignore. And more importantly, it is a time to reach out to the hurting around me in their time of need. We live in community and in this place, friendship and outreach matter.

In the end, every circumstance is a choice to either trust and accept or harden and anger. Sometimes the choice is clear and sometimes it’s a long season of hurt and frustration. I know I will never understand, this side of heaven, why things happen. I’m certain we aren’t supposed to see the big picture. I only know my life is in God’s hands. All of our lives are in God’s hands. There is no better place to be even though sometimes I do question.

Isaiah 41:10 ~ Fear not, for I am with you. Do not be dismayed. I am your God. I will strengthen you; I will help you; I will uphold you with my victorious right hand.

Jeremiah 17:7-8 ~ Blessed is the man who trusts in the Lord and has made the Lord his hope and confidence. He is like a tree planted along a riverbank, with its roots reaching deep into the water—a tree not bothered by the heat nor worried by long months of drought. Its leaves stay green, and it goes right on producing all its luscious fruit.

My young years were shaped by a lady who became my dearest friend, who taught me to laugh til I cried and taught my sisters and me the game of Nerts. She left a legacy of love and acceptance, of knowing when to say I’m sorry and giving grace in the hard moments. She loved Jesus well and modeled how to praise Him when life was as hard as it can get. And even in her dying breath, she was thanking her Savior for a wonderful life full of blessings.

My life is rich and bountiful with the four joys I have the privilege of loving on every single day. As the years pass, my kids need me less physically but ever so much more emotionally. I have had to humbly ask for forgiveness of them many times for saying the wrong thing, using a harsh tone, being impatient, not listening well, putting my own desires above theirs. I’m not a perfect mom but I do try. I certainly give my best to my kids, but at times I have given them my worst. My goal is always to teach them to seek forgiveness in the mess. Life isn’t fair is one I often say, trying to teach them disappointments will come. And at the same time, we celebrate victories and achievements, no matter how small. As my babies get older with the passing years, I am cherishing the relationship changes and realize how very much I enjoy these teenage years. They don’t need me to zip their coats or tie their shoes, I don’t make them breakfast every day, they don’t need me to find a bandaid when they cut a finger, I don’t tuck them into bed and read them stories or scrub shampoo in their hair. Those moments are gone. In their place is a more mature relationship where feelings are exposed, dreams are shared, fears are found and security and acceptance are relished. As our kids age and prepare to make their own place in the world, I am loving the moments of teaching them the realities of life outside the family home and modeling skills to see them through their adult lives. The most beautiful moments are those spread out on the family room couch, lying on the floor and curled up in the chair as we share our hearts with each other and pray together. Of all the things I have modeled for my kids, taught them in their young days, their relationship with Christ is key to every moment they experience. Their salvation is the solid foundation to see them through.

I may not always do this mother thing well, but I do my best and my kids know I love them. I had a wonderful teacher.

Here are a few more random pictures with several of our room. Our accommodations were very nice and it was very relaxing and quiet. I think this is enough photos (there are four more posts of pictures below this one) but there will be more coming. We were blessed with professional pictures so I will post those after they are edited and sent to us.

I have to say, Make A Wish really went above and beyond anything we could have hoped for. The trip was relaxing, stress free and fun. We had so much fun as a family and enjoyed every minute. The activities were a great balance of relaxation and adventure. This is a trip we will all cherish for years and we were so very blessed by the generosity of so many who give to Make A Wish. Thank you, too, for all your prayers for Ryan’s health. We were very worried as we flew down to Miami because Ryan did not do well that first day. By the grace of God, Ryan’s energy returned, his GI system worked as it should and he was able to enjoy lots of chicken strips and French fries which are his very favorite foods. God has been so very gracious in His provision of this trip and His perfect timing to bring healing to Ryan’s body so he could have fun and enjoy our time away.

The kids looking at all the colorful fish under the boat.The kids goofing off as we waited to board the boat to go snorkeling. I have to say this was my absolute favorite part of the trip. We were five miles out from the shore and I could have stayed out there all day. It was amazing! After Ryan’s experience the day before, he and Travis stayed back at the resort for this adventure.

Watching the dolphins swim before it was our turn.
Ryan absolutely loved the pool! We spent a lot of time there every day as there was lots of shade from all the palm trees. The kids drank lots of fruit smoothies and oreo cookie shakes poolside too.

This cute, pesky pelican sat on this sign out on the pier every single day and loved to try to steal the fish and bait from people.

Ryan loved the deep bathtub and enjoyed his daily bath time

This last picture is one of my very favorite. It was very hard for Travis and me to let the trainer take Ryan out in the water – plus he was the first of us to swim out there – but we trusted her and let her take him out. I cried as Ryan was pulled in a big circle by Santini because it was so wonderful to see him have the experience. The time we spent with the dolphins was one of the best parts of the trip and we all had a blast with them. The trainers were amazing and we had them all to ourselves. The second dolphin, Reese, is Santini’s son and is only a year old so he is still learning all the tricks. It was fun to watch him swim next to his mom when she would pull us around in the water.

We are ready to start our adventure! This afternoon a limo met us at Southeast HS and we picked up Brad then headed to Pound to get the middle two kids. We then went to Humann where all Ryan’s fifth grade classmates lined the long sidewalk to the street and clapped as we all walked down to the limo and took off. I was surprised how emotional I got. Make a Wish sure goes all out! We are being very spoiled for sure. Ryan is still up and down and is not at all 100% unfortunately, but we are trusting God for complete healing. He still can’t tolerate very much fluid in his stomach at one time and has to be tube fed every two hours. He isn’t getting the normal amount of nutrition he usually gets because of the gastroparesis that is keeping his stomach from emptying like it should. His intestines are working just fine though which is a blessing but to get the food in, we need his stomach to fully wake up. Please continue to pray for complete healing. It’s very hard to stay positive and not allow the fear of all the “what if’s” to creep in. We simply want him to enjoy this trip and to do that he needs good nutrition for energy. Thank you for your prayers.

If I have some down time I may update on the trip but otherwise I will post pictures when we get back. Thank you for your continued prayers. Blessings!

We’ve got a busy few days ahead of us trying to get things done, pack, tie up loose ends. But it’s exciting, and we have our itinerary which looks fun. The kids are starting to get excited finally but are still very reserved, and I can’t blame them. Travis took Ryan to get his new wheelchair and bath chair this morning and while there Ryan threw up again. I’ve decided his intestines may have woken up but his stomach is still struggling to empty (gastroparesis). We’ve dealt with this many times and will have to take things a little slower with his feedings than we thought. Hopefully some new meds and an adjustment to his feeding schedule is all he will need to be on the road to healing. Please continue to pray with us that the Lord will bring healing to Ryan’s little body so he can fully enjoy this trip and have the energy to engage and experience it all with us without needing extra naps. I know God is faithful and have experienced His mercy many times. So I’m choosing to walk by faith in this and believe Ryan will be completely healed by the time we leave for our trip which is only two days away.

Hebrews 11 says faith is the substance of things hoped for, the evidence of things unseen. I’m hoping for healing to Ryan’s tummy problems which remains unseen at this time. I love how this chapter gives so many examples of people in the Bible walking by faith. In fact, the words BY FAITH are used nineteen times here. I think God definitely wants us to understand He can do His greatest work when we are walking by faith and not by reason, justification, sight or facts. He uses the unknown, the fear, the seemingly impossible to show us all He can accomplish when we have faith.

By faith I’m believing God will heal Ryan’s stomach. By faith I’m believing God will give Ryan energy to enjoy his Make a Wish trip. By faith I’m believing God will bless us with a week full of wonderful memories to cherish for a life time. By faith I’m believing God allowed the events of the past two weeks to happen right before we leave for reasons I do not understand. By faith I’m believing God will take my fears and worry and instead fill me with peace.

Please pray with us and for us. We covet your prayers and thank God for each one of you and the blessing you are to our family. Much love!

Praise God! Ryan’s intestines have finally woken up and things are moving. We are still taking things very slowly and conservatively with formula and food. He is only getting Pedialye every two hours and we are not allowing him to eat anything until Monday just so his intestines don’t have to work to digest formula and food. He’s also getting Zofran twice a day. Best of all, he is stooling which is the most important thing. He is still sleeping a lot but when he is awake his spirits are good. I know he’s feeling better because Friday night he was in the kitchen opening then slamming the freezer door shut while laughing hysterically.

I can’t say enough how thankful we are for your prayers and encouragement. One of my dear friends showed up one night with tulips, ice cream, cookies and candies. Another sent a card of encouragement and others have called, emailed and texted. It’s been an emotional two weeks but as always, the Great Physician came through in His perfect timing and is restoring Ryan’s health. And without a hospitalization! Ryan’s GI system is so fragile but God is taking care of everything. My faith has been stretched and I’m thankful for these lessons.

Thank you again for your prayers. We are looking forward to a relaxing week on the beach and I am really looking forward to getting some relief from my allergies! We love you all!

I enjoyed a very relaxing day at home with Ryan thanks to Arbor Day. When you work for the state, everything is a holiday (I’m not complaining at all!). I’m very blessed with great benefits and lots of paid days off. Ryan slept all morning as usual; Travis had to renew his CPR and first aid so he was not home all morning. I woke Ryan to take him for another abdominal xray and once he moved around he started throwing up again. After a much needed bath and Travis coming home, we went for the xray which Ryan was not at all thrilled about. I was glad we were both there to hold him down. I talked to our pediatrician this evening and the GI doctor as well, and the xray of Ryan’s abdomen is normal. He isn’t constipated, there isn’t any air. So…..we have no idea why he is still throwing up occasionally, has no appetite, is sleeping more and hasn’t pooped in over a week. I was irritated and stressed and emotional. I had a good cry, yelled, cried some more, talked to my sister, and now I’m over it. We have a prescription for Zofran and are going to lay off the formula this weekend and only give him Pedialye to let his intestines calm down. The doctors have no idea what’s going on so we are treating symptoms and hoping that’s all he needs and it doesn’t turn out to be something more. Hopefully this is all the result of a virus and after the weekend Ryan will be back to his normal. I have to trust God for healing. He’s a big God we serve!

Tonight my dad and his wife are coming to Lincoln and spending the night. They are taking all the grandkids out for pizza and then back to the hotel to swim. My sister and BIL are heading to Omaha for a fundraiser while Travis and I go out for dinner and to see Larry the Cable Guy downtown with friends. Thankfully Lyndsey, our beloved respite, will be home with Ryan so he can relax and rest. There simply isn’t anyone else in the world I trust more than our Lyndsey to love on Ryan right now. She’s the best and we are so very thankful for her big heart and love for our boy.

Please continue to pray with us for complete healing of Ryan’s GI system so we can take this Make a Wish trip and not have to worry about Ryan’s health while we are gone. Again, we appreciate your prayers and support.

I have been so down these past two days and am struggling to trust God in all the unknowns right now. Ryan is still very off and prefers to sleep far more than usual and when he is awake, he is most comfortable lying in bed staring at the wall. His happy moments are short and his ability to interact with the family can be volatile. As my sister said, he just doesn’t have much reserve right now. It’s hard to watch because I want so badly for him to be happy, excited, sitting at the table eating pancakes (his new preferred food) and needing to be reminded not to throw pieces of food on the floor for the dog as he laughs. He isn’t eating anything by mouth and I really don’t think he has an appetite. A few days ago he sat down to eat some pancake and only made it through 3 or 4 bites before he wanted to go back to bed. We are still doing small boluses of water, pedialyte and pediasure (his normal formula) every two hours or so and he is tolerating those with gagging/coughing usually only once a day. I also think he is having a decent amount of belly pain. Things are digesting slower than normal, but he’s doing OK.

I spoke with our pediatrician Wednesday and have to say how blessed we are to have such a wonderful team taking care of Ryan. I called yesterday morning and asked to have our doctor call me and the receptionist didn’t even question me. Within ten minutes my phone was ringing. Our doctor suggested giving Ryan an enema and seeing if that helps. Because it’s a two man job with a 100 pound child who does not enjoy the procedure, I left work and went home to help Travis get it done. The enema worked immediately but since last Thursday, he has only stooled once and it was due to the enema. This is exactly what he did two years ago when everything shut down so my concern is that his bowels have shut down and are simply not moving anything at all. We are going to see how today goes and call the doctor tomorrow to check in. If he does not improve, I’m concerned he may end up in the hospital for complete bowel rest.

We have been through much worse with Ryan. What brings me to tears is not so much that he is struggling with his GI system, but that we are supposed to be on a plane next week at this time. I cried on the way to work this morning and just kept saying “God why couldn’t you give us at least a whole week before this trip to just be excited and happy and giddy? Why the cloud of worry and fear that Ryan won’t be physically ready for the trip?” This is supposed to be a very big deal, an exciting once-in-a-lifetime opportunity, and now it’s clouded with uncertainty. Maybe it’s just me throwing a tantrum that things are not going my way; I just know I’m frustrated and hurt that this is happening with Ryan right now.

This morning I texted Travis and told him I’m having a rough morning and am very worried. His response was so good ~

It’s in the Lord’s hands. There is nothing we can do right now. Our thoughts are not His thoughts, our ways are not His ways. We all have our ups and downs and at times like this, it is hard to remember all the blessings. I always think of Job. Through his wife, Satan told Job to curse God and die. Job basically said do we accept the good times and blessings and not the bad? We have talked about how hard it is to get excited about positive things because we think about the negative around the corner. My goal today is to praise.

Travis said it well. Praise is a much more productive way to spend my time than thinking of all the things that can go wrong. God is so much bigger than the circumstances of my today worrying about whether Ryan’s intestines are going to wake up and start working in the next couple of days.

A while ago, I put cards on the walls next to the older three kids beds that say “Can’t sleep? Talk to me. ~ God”. I’ve told them numerous times, when things get you down, just say the name of Jesus over and over and over again. There is power in the name of Jesus. There is peace in prayer. There is healing in trust. There is blessing in faith.

Pray with us. He is the Great Physician, and we desperately need Him to heal Ryan’s little body. Specifically, please pray his intestines will wake up and start working correctly, that his energy comes back and that he is fully healed of whatever is affecting his health so we can go on our trip next week and make lots of memories.

Love to you all!

Today Ryan’s GI doctor looked at his abdominal xray and said he doesn’t see a bowel obstruction. This doctor said he probably just has a virus that is affecting his motility. It’s very frustrating when one doctor says there is an obstruction then the next doctor say no there isn’t. So, we are waiting until Thursday to see if he improves and if not, we’ll reassess and go from there. I’m quite frustrated with this whole mess but am still believing whatever it is, Ryan will improve and be back to his normal self by the weekend. One of the kids was very upset last night and said “I feel like God is stabbing us in the back”. I get where she is coming from, so last night I prayed God would show His goodness and mercy to our family over the next week before we leave. We appreciate all the prayers and concern for Ryan. Please keep praying for a full, quick recovery so we can keep him out of the hospital and go enjoy our trip next week. I’ll keep you updated. Much love.

We would very much appreciate prayers for Ryan right now. He threw up several times on Thursday and hasn’t been right ever since. Today he started throwing up again so Travis took him to the pediatrician. Ryan had blood drawn (normal), a strep test (negative) and an abdominal xray. As I suspected based on his symptoms, he has a partial bowel obstruction (he has had several in the past). Travis asked for the xray to be sent to the GI doctor and we will talk to them tomorrow to see what they suggest. For now the pediatrician said to increase his Miralax, but I really want to know what the specialists say as they are the experts on this plus they have treated Ryan for this in the past.

Many of you may remember two years ago after Ryan had his fourth brain surgery when he cycled with eating and stooling just fine then gagging and throwing up. It started two days after his corpus callosotomy, and we went home after four days in the hospital then were back in the ER within 12 hrs due to vomiting. The xray was normal but we were back in the ER 8 to 12 hours later because he still could not hold anything down and that xray showed a partial obstruction. He was hospitalized again and went home after a week. Within 24 hours we were in the pediatrician’s office, and Children’s Hospital sent their ambulance down to pick him up from the office. He was then hospitalized, had a PICC line and was on TPN for almost two weeks. He also had surgery to change his G tube to a G/J tube and went home on 24 hour feedings into his small intestine because his stomach refused to wake up (gastroparesis).

As many of you would expect, I have been in tears on and off all day as I suspected this was happening again. I know my son better than anyone else on the planet and I never forget anything with him. I know God is faithful and has it all under control. That said, I’m still fearful of what is to come in the next few days and am praying this does not worsen and cause Ryan to end up in the hospital again.

We are only ten days out from leaving for Ryan’s Make a Wish trip. And while we can certainly delay the trip if needed, this has been six months in the making and the older kids would be absolutely devastated if we have to put it off. And honestly, I would be devastated too.

In the past twelve days, two teachers have asked Sidney and Trevor separately when their brother is going to die or if he is dead when they mentioned our trip because they were concerned about assignments they are going to miss while we are gone. Then on Friday my boss told me someone told her they didn’t appreciate hearing about my Make a Wish trip and that they now know every detail of my life and don’t want to know all that. It upset me because for one, this person doesn’t know squat about me and they shouldn’t have been listening to a conversation that has nothing to do with them, and two, get a life! As my boss said, some people are just miserable and don’t want to hear about anything good happening in other people’s lives. Well, if you want to live the events of the past ten years and all we have endured with Ryan, be my guest. It’s hasn’t been roses and I would gladly trade a Make a Wish trip for a healthy, talkative, strong boy. But God gave me Ryan just as he is and I’m going to enjoy every minute and be thankful for this trip that is a huge blessing to our family.

Please pray with us that God will heal Ryan’s GI system quickly and completely so we can go on this trip next week and have the time of our lives. God is the Great Physician and I trust Him even though my mind is prone to wander toward fear and “what if’s”. As my favorite verse says:

He will cover you with his feathers and under His wing will you take refuge. His faithfulness will be your shield and rampart.

I just read Psalm 91 this morning before heading to the gym. The Lord must have known I needed it today; I literally sat on the couch and my Bible opened to this page.

I will keep you updated. Thank you for your prayers. You are all very loved and appreciated.

Psalm 91
He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the LORD, “He is my refuge and my fortress, my God, in whom I trust.” Surely he will save you from the fowler’s snare and from the deadly pestilence. He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. You will not fear the terror of night, nor the arrow that flies by day, nor the pestilence that stalks in the darkness, nor the plague that destroys at midday. A thousand may fall at your side, ten thousand at your right hand, but it will not come near you. You will only observe with your eyes and see the punishment of the wicked. If you make the Most High your dwelling– even the LORD, who is my refuge – then no harm will befall you, no disaster will come near your tent. For he will command his angels concerning you to guard you in all your ways; they will lift you up in their hands, so that you will not strike your foot against a stone. You will tread upon the lion and the cobra; you will trample the great lion and the serpent. “Because he loves me,” says the LORD, “I will rescue him; I will protect him, for he acknowledges my name. He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him. With long life will I satisfy him and show him my salvation.”

“Words are like eggs dropped from great heights; you can no more call them back than ignore the mess they leave when they fall.” ~ Jodi Picoult

In two weeks we will be blessed with a wonderful opportunity to spend a week together as a family on the sunny beaches of the Florida Keys, all thanks to Make a Wish. And while we are very excited to go, I’m a bit nervous about getting Ryan through TSA smoothly because of his wheelchair, leg braces, stimulator in his chest, plates and screws in his skull, not to mention all his meds, feeding supplies, formula, diapers and other medical supplies. And then what if he has a lot of seizures on the plane, and will the airline attendants or other passengers freak out even though to us it’s as normal as taking a shower every day. I know in my head it’s silly to be worried but I still feel uneasy about it all because we’ve never flown with him. But the opportunity is amazing, and I have no doubt we will have a fabulous, relaxing week. These are just minor details, and God’s already got them all worked out.

I simply wish the kids were more excited about our trip and didn’t have to endure the emotions that are connected to a Make a Wish trip. All three of them are well aware why we are going – because their little brother has a disease that can kill him. It’s easy not to think about all that on a day to day basis because for all of us, it’s our normal. We live it every day. This week has been especially teary and for good reason.

A few days ago one of the kids was talking to their teacher about being gone for a week. I think it had something to do with a project or a test they would miss. I can’t remember, and it doesn’t matter. Anyway, my child told the teacher we are going out of town to which the teacher asked where. Child said to the Florida Keys and teacher asked why. Child said for a Make a Wish trip and teacher responded with this – “so when is he going to die?” Are you kidding me?! Who in their right mind says that to a child? Or to anyone for that matter?! Child stared at the teacher, turned around with tears in their eyes trying very hard not to cry in class and said nothing.

That evening I came home to child who was all worked up and started crying. Several times that night child cried and has struggled with thoughts of their brother’s death throughout the week. I’m sick to my stomach for the agony such senseless, thoughtless words have done to my child. The other kids were nearly as upset but nothing compared to the anger that stewed in Travis’s heart when he heard those ridiculous words.

I did send an email to the principal of the school and have not received a reply. More than anything, I simply hope the email gets out to all the teachers there because my words were kind and thought provoking – a good reminder that words count.

Whoever keeps his mouth and his tongue keeps himself out of trouble. ~ Proverbs 21:23

There are five things you can’t recover in life: a stone after it’s thrown, a word after it’s said, an occasion after it’s missed, time after it’s gone, trust after it’s lost.

I hate that the days leading up to our wonderful trip are clouded with hurt. I want to scoop the pain out of my children’s hearts and hide them away from the cruelties of this world. I want to protect them from the insensitivity of others, from the careless words spoken much too fast.

School has always been the one place in my kids’ lives where they get to be normal. Where they can just be Brad, Sidney and Trevor. Where their youngest brother and all his seizures and hospitalizations and surgeries and medications and need for constant supervision and 100% dependence on others does not enter through the doors. Where they can laugh and talk and socialize and forget for even just a short time that home may be wonderful, but home means disability and not knowing what one day to the next will bring with their sweet little brother.

And I feel like that was taken away from my child. And I’m angry about it. But I have mastered the decision of forgiveness. I have stretched out my hand and my heart and given grace. Completely undeserved grace. And I have prayed for that teacher. Prayed they will show mercy and love to my child. That humility will win and forgiveness will be sought. But at the end of the day, I am not responsible for how this teacher chooses to handle their insensitive words that pierced my child’s heart with pain and lingering sorrow. So I choose to dwell in forgiveness and bless my child with a mother’s love. Because my job is to be comfort. I can’t scoop the pain from my child’s heart but I can love. I can cry along with them. I can be mercy.

Words matter. They can’t be taken back. I know full well the damage a spoken word can do. Years ago when my kids were young, I was at the park with several friends. It was a play group I belonged to and there were lots of cute little ones running around with chips and fruit and peanut butter smeared all over their clothes, faces and hands as they jumped and giggled. I don’t remember how the conversation played out but I can tell you which picnic table I was sitting at, I can tell you where all the other moms sat, I can describe the big evergreen in front of me, I can tell you the sun was shining down on us. But what mattered, what affected my soul, were the spoken words when one of the moms said to me, “Kim, you have a very overwhelming personality”. After many months, buckets of tears and far too much time questioning my personality and my worth, I chose to forgive. Yet even now, years later, those words still sting. And I will never forget the impact those words had on my heart. I guarantee you my child will never forget the harsh words spoken to them this week either.

The Bible says it best…

Keep your thoughts on whatever is right or deserves praise: things that are true, honorable, fair, pure, acceptable, or commendable. ~ Phil 4:8

Because out of the mouth the heart speaks. Choose your words carefully.

Tonight the kids and I went out for dinner and ate a hearty breakfast at Village Inn. I can’t even remember the last time I was there but it was the kids’ idea and since we hardly ever go out, why not. I think Brad ate enough for three people and was eating all the food no one else had room for. It was kind of funny but at 16, he’s not lacking for an appetite! And Trevor used a gift card he’s had around for a while and brought home a chocolate peanut butter cup pie that looks heavenly.

Trevor is lying on the couch telling us about the 25 Worst People in History which is really quite interesting. He is the king of random facts. Always has been, always will be. He missed school today because he caught a nasty stomach bug but seems to be feeling a little better this evening.

Brad had a light bulb moment and finally admitted that he’s figured out he needs to study for more than ten minutes to do good on his biology tests. I’ve been telling him that for how long?! He’s finally figured out at the end of his sophomore year of high school that he actually has to study now to get good grades. He’s always been able to get A’s and a couple B’s without studying much. But those days are now over and thankfully he realizes it. Some thing you just have to figure out on your own.

Sidney has been very pleasant and talkative. I’ve really enjoyed this evening with her. Now that she is 14, I’ve learned to embrace the moments when she is happy and engaging because let’s face it, she’s 14. I vividly remember what I was like at 14 and they aren’t all beautiful memories; I admit my mom and I fought a lot because I was a real brat at times. Let’s just say I’m getting payback for how I treated my mom in jr high. It’s not that bad but anyone with a teenage girl knows exactly what I’m talking about.

And Mr. Ryan had a very rough weekend. He’s been really out of it lately and just like the tide, he comes and goes with his ability to engage with us. We are used to it to some extent but I can’t say it ever get easy to accept. I’m just praying he perks up a little more before we take our Make a Wish trip in two weeks but regardless, we will have fun and enjoy every minute. It’s all about celebrating Ryan and spending time as a family, and we will succeed at that no matter how interactive and alert Ryan is.

At this stage in life, everything revolves around the kids and we like it that way. They are growing so fast we realize our time is limited and the older they get, the faster the years seem to slip away. We’ve been able to enjoy some fun dates lately and are learning to make it a priority to be together. It’s been quite the adjustment these past four months with me working normal business hours. Ever since Brad was born, we have always had jobs that were 24/7 but with law enforcement and nursing, that’s to be expected. But the blessing has always been that we’ve been able to enjoy full days at home together because we’ve worked 12 hour shifts. And we’ve never had two full time incomes with one of us either not working at all or only several hours a week. It’s been especially nice these past eight years since Trevor went to kindergarten because while the kids have been in school, we’ve had at least one or two days a week when we were home all day together. And now those days are over and we have to adjust to living like normal people who actually have to be intentional to make a date and go out. It’s not a bad thing, but it’s different and we simply aren’t used to not having lots of time alone together. We’ve been spoiled for so many years.

And now Trevor is telling us how all the disciples died. I just love that boy. He’s entertaining and full of knowledge at the same time. You’ll always learn something with him around!

Enjoy your day!

A couple weeks ago I said it’s good to rehearse your victories. To take the time to look back at all the beauty God has created in your life. Sometimes that beauty is only seen after a difficult storm when the clouds clear, the sun rises and His mercy is revealed. For some reason the following post, titled “one year”, caught my eye and I was curious what the one year marked until I saw the date and knew immediately. As I read it, tears fell from my eyes as my heart remembered these moments. And I once again had to rehearse my victories because God was so good to us – to Ryan – through those months. Three brain surgeries in 8 days, another surgery 7 months later to put the VNS in his chest, his fourth brain surgery 8 months later followed by a month long hospitalization for a GI system that completely shut down. God is good and gracious and present at all times.

one year….written in November 2011

One year…..how is that possible? One year since we watched as they wheeled Ryan down the hall to surgery. One year since they opened up both sides of his skull and placed 88 electrodes directly on his brain. One year since he spent 10 days in the pediatric ICU with tubes and wires everywhere. One year since we sat at his bedside, 24 hrs a day, praying and pleading with God for those three surgeries to stop his seizures. One year since they removed most of his right frontal lobe and gave him three craniotimies. One year and the seizures persist with a vengeance.

My heart is heavy with the thought of putting him through a fourth brain surgery, but I know it has to be done. Travis and I promised Ryan and each other we would do everything possible to save our little boy from these nasty seizures, and this is our last option. And they have literally destroyed his brain leaving him as a one year old in a big eight year old body. They have taken his ability to speak, to use his hands correctly, to walk without faltering, to live any semblance of a normal life. And though the seizures have wreaked havoc on his precious little body, they have not destroyed his spirit. Ryan’s seizures have not taken away his smile, his giggles, his ability to love in his own little way and to receive love. They have not destroyed his ability to go to school everyday, interact with people and live a full life. He may not live life like most of us, but Ryan does have a life full of people who love him and think the absolute world of him. He lacks for nothing because he is loved, spoiled, doted on, prayed over and accepted just as he is. I like to believe Ryan is changing the world around him, causing people to see that in spite of being broken, he has a purpose and God is working in him in ways we simply can’t see.

Surgery didn’t stop his seizures, but it did put a smile on his face and a giggle in his belly that we are enjoying every single day. I have no idea what the future looks like for Ryan, how long God will let us keep him here with us, what will happen if his seizures stay out of control. I can worry and fret about it all day if I let myself. Instead, every single day, I have to focus my mind on all the beauty Ryan has brought into our lives, how he’s changed us to realize God has a plan much bigger and better than we could ever have imagined. Because of Ryan we dream of starting Ellisbrook where disabled adults can live with families on an acreage with animals, a greenhouse, a garden, living out their lives being loved, accepted, cared for and wanted. And we trust God will provide the team, the finances and the path in his timing. It’s exciting and scary all at the same time, but we believe with all our hearts God would not have put this dream in us if he did not intend to make it a reality some day.

One year….and although Ryan has not improved medically, he is doing exactly what he was sent here to do. He is filling the world with joy, teaching others about acceptance, living his life with purpose the only way he knows how……exactly as God intended him to be.

my sweet little sleeping angel

Life is short and we have never too much time for gladdening the hearts of those who are travelling the dark journey with us. Oh be swift to love, make haste to be kind. ~ Henri Frederic Amiel

Last night I was talking to a close friend on the phone, catching up on the events of our lives. We talked about marriage, personal struggles, how our kids are doing, the ups and downs of everyday life. She shared some new struggles she is facing and how she was afraid to tell me fearing I would judge her. And of course I didn’t. After we said our goodbyes, I laid in bed and thought of how little we know of those around us. It’s so easy to go about our day not recognizing people. And I felt very convicted to be cognizent of how I treat others.

I know my husband well. We have a shared story, we parent together, we make decisions as a single unit. Yet there are still disappointment, hurts and fears we do not share with each other. We all have hidden thoughts and emotions. We all have scars. We all have pain in our past and often in our today. And what it made me remember is this – kindness counts. It matters.

Sometimes it’s as simple as a smile and a “hi” when you pass in the hall, or maybe it’s helping someone reach a can on a high shelf at the grocery store, or holding the door open for someone going in or out behind you. Maybe it’s a card in the mail saying “I’ve been thinking about you and you have been in my prayers. Just want you to know I care”. Often times it’s remaining calm and polite instead of reacting rudely when someone gripes a little too much, is a bit too sharp in their response or brushes you off when you try to speak.

Kindness. It’s very easy to give to others. You just never know what someone else is going through and how a little gesture of kindness may impact their day. Because we don’t know someone’s story fully. It’s very easy to judge others but the truth is, we simply don’t know what someone else is facing. It could be the stressed mom at the grocery store who just found out her parent was diagnosed with a life altering disease and has little time left, or maybe it’s the elderly man at the gas station who is struggling to fill his tank because his dementia is worsening and he is afraid of who will care for him when the rest of his memory fades, or the teenage boy walking down the street whose parents are divorcing after finding out one of them has been having an affair, or the man in your office who has to go home and tell his wife their house is going into foreclosure after struggling financially for the past year because of the many months he was without work after losing his last job to a poor economy, or the lady at church whose adult child is caught up in the haze of drug abuse, or the teenager with constant thoughts of suicide trying to hide the depression and despair or the little girl who ends her days enduring sexual abuse by an older step brother. It’s very easy to wake up every morning, get dressed, comb your hair, put some make up on and move about your day without giving any indication of the pain and stress in your soul. We so quickly judge people based on how stylish their clothes are, how much they weigh, what car they drive, how many degrees they have earned, how good they are at sports or how big their house is. But those give no indication of the pain they carry every day.

Kindness counts. It looks beyond the obvious, it sees no boundaries or limits, it seeps into the cracks of a hardened heart, it impacts the outlook of a weary mind. Kindness is color on a cloudy day. It’s refreshment to a thirsty soul. It’s joy in the unexpected moment.

The Bible tells us to be kind…

Colossians 3:12 ~ Put on then, as God’s chosen ones, holy and beloved, compassionate hearts, kindness, humility, meekness, and patience…
Ephesians 4:32 ~ Be kind to one another, tenderhearted…
Luke 6:35 ~ But love your enemies, and do good, and lend, expecting nothing in return

You never know if your smile, your small gesture of picking up a dropped item at the store, your sweet word of acknowledgement or your short conversation about the weather may be the only act of kindness someone receives during their day. We simply don’t know another’s story. Kindness counts.

So I’ve been with my husband for over half my life having started dating when we were both 20 yrs old, and we will celebrate our 20th wedding anniversary in June. If anyone ever asked me to give advice on the subject, the very best advice I think I could ever give is this: remember that you are not perfect either. I remember being engaged and planning in my mind how wonderful and perfect our lives were going to be. I think God has a sense of humor and allows us to see our spouse with rose colored glasses so we will actually go through with the wedding vows before reality sets in. And reality isn’t bad; it’s just not what you expect when you are in the throws of wedding planning, dreaming and mapping out the course of your life. Don’t get me wrong – I love being married to my guy, and I wouldn’t trade him for anything.

I’ve also learned that marriage is simply this: it’s the sequence of one good choice after another. It’s focusing on all that is going well instead of making a list of my spouse’s wrongs. It’s choosing to focus on all the blessings instead of counting all the things that didn’t go my way. It’s waking every morning with gratefulness for the partner at my side instead of waking with frustration at the argument we had the night before. It’s working my rear off to be the spouse my husband needs instead of trying to fix all the things in his personality that annoy me. It’s saying I’m sorry even when I don’t think my spouse deserves to hear it. It’s asking for forgiveness even when he is really the one who needs to be forgiven. It’s giving him a hug and seeking intimacy when I’d rather tell him to take a hike and stay out of my hair for the next week. It’s taking time to laugh together when I’d rather get my to do list done. It’s acknowledging and working really hard on my own imperfections when I’d rather focus on and tell him how to fix his.

Marriage is very simply two screwed up, imperfect people whom God places together to do this thing called life. It takes work, it takes hours and hours of communication, it takes perseverance – much more perseverance than you ever expect in those perfect honeymoon months. It takes commitment and honesty and having the hard conversations when feelings get hurt and tears fall. Marriage takes time. It takes a lot of effort. It’s a commitment like no other. It takes perspective to see that every day will not be wonderful, but every day will not be terrible either. There is good when you choose to find it. When you focus on all that is going right, the annoyances really take a back seat.

I’ve learned over the years that when you have a spouse you really love and enjoy being with, the hard is bearable, the tears are shared, the joys are exaggerated, the laughter is louder, the trust is deeper and the days are fuller. And honestly, even when we have seasons of dull/blah/take-it-or-leave-it, because there are plenty of those over the years, I wouldn’t have it any other way than to have him right here next to me. God has blessed me with a man who keeps me entertained, who makes me laugh every day, who gently reigns me in when needed, who calms me when I get angry, who patiently listens when I won’t stop talking, who loves me in spite of my annoying faults and who is my very biggest and loudest cheerleader. And I am proud to be his wife.

Marriage is a gift. Unfortunately there are far too many people who think it is disposable instead of something to be valued and cared for. You simply can’t discard a piece of yourself and that’s exactly what your spouse becomes when you unite in marriage and make that vow. I realize there are many reasons why marriages fall apart and I’m not here to give a dissertation on when it is or is not OK to get divorced. That’s a whole different subject I am not going to broach. My point is that every day is a choice to value and cherish the gift. God made us to desire communion with another, to seek romance and love and affection. He gave us the ability to live in harmony with a spouse and even gives us the skills and abilities to be successful at it.

The older I get the more I realize that each day can bring sorrow. Each day can bring surprises and wonderful moments. None of us knows what is around the next bend of our journey. Our journey has brought much more pain than I ever expected all those years ago when I was planning out my life. But having someone holding my hand so we can discover it together, knowing no matter what comes he has made the commitment to face it together, that I cherish. Every day. Because even in the tough times, every day has the ability to be beautiful. I love my guy; there’s just no way around it.

Trevor is 13 today!

As of today we have three teenagers in the house. The years are just flying by but again, as I’ve said many times before, I absolutely love the ages my kids are at right now. I wouldn’t trade these years for anything. This morning at church someone said “thirteen is the hardest age”, and I kind of shook my head because I can think of several years that were much harder than this. I guess we’ve just been very blessed so far, and I have no doubt this year will be a good one with the newest teenager.

So HAPPY BIRTHDAY, Trevor! My prayer for this next year is for you to grow in the knowledge of Christ and to simply enjoy every day God blesses you with. I have to say, Trevor has grown up a lot this past year and has become a fun, engaging, likable guy. Not that he wasn’t before, but he has a maturity to him and just seems so much older. I just love the kid. He has wonderful friends, is low maintenance, no drama and doesn’t ask for much. When he wants to talk, he will chat up a storm and have the most interesting conversations but when he isn’t in an outgoing mood, you won’t get a word out of him. He’s also decided to take up golfing and has had a lot of fun this spring getting out on the greens a few times already with friends and Brad. So for his birthday we bought him a new set of clubs, and he is very much looking forward to a summer full of golf.

This evening Travis took the kids to Omaha so they can go to Winter Jam which is a four hour concert with groups like Newsboys, Lecrae, Colton Dixon, Plumb, Thousand Foot Crutch, Everfound and Newsong. And it’s only $10 at the door which is amazing for all those artists. Of course they stood in line for 2 1/2 hrs this afternoon so they could get in, but at that age those adventures are fun (I’m certain I wouldn’t like standing in line for that long anymore). And they had the most beautiful weather today to be outside in! They have a couple friends with them so I’m sure they are having a wonderful time and will be tired at school tomorrow since they won’t get home until very late.

Here are a few pictures of our day…..and there aren’t any of the girl because she wasn’t feeling photogenic today.

There isn’t much else going on at the moment except that Brad is now in full golf mode. His days are very long since golf practice lasts almost three hours every day, but of course to him it’s all fun. Sidney had her last volleyball tournament yesterday, and they placed 5th out of 60-some teams and won the silver tournament. Trevor and Ryan don’t have much going on right now and are doing well. There are no changes with Ryan which is a good thing. He has good days and bad days but overall, he isn’t declining much right now, and we are very thankful for the health he has. Of course his seizures are still rampant but that’s normal life for us. We are all counting down the weeks until we leave for our Make a Wish trip and should be getting our itinerary very soon. We know the days we will be traveling but the rest of the trip is still a surprise except for the resort we are staying at which is very nice. I still can’t believe we are being blessed with this trip and vacilate between thankfulness and grief over having a child who qualifies for it. But we are going to have a blast and enjoy every moment, relax in the sun and make lots of wonderful memories together as a family. I really have to fight worrying over the details of getting Ryan down there since he has never flown. It feels completely overwhelming to travel with medications, formula, feeding supplies, diapers, etc. I feel overwhelmed just traveling by car with him. And we have to get him through security with his wheelchair, plates and screws in his head, a vagus nerve stimulator in his chest and metal braces on his legs. But people do it all the time and I realize my worry is a complete waste of energy. I still find myself getting caught up in all the planning and preparing it will take to fly with him though. Traveling with Ryan is hard whether by car or plane because he has so many needs and supplies, but it will all work out. Only a few more weeks and we will be soaking up the sun and having a blast together.

I hope you are all outside today enjoying the beautiful March weather! It’s getting a bit windy this afternoon but what’s new. We do live in Nebraska and wind is synonymous with Nebraska. I always laugh when people move here from other parts of the country and comment on how windy it is on the plains. The buds on the trees are making me so happy as everything is coming back to life. All this brown is getting old and I am so excited to see some color soon. I simply love spring and the changing weather although I have to say, I won’t at all be surprised if we get hit with another few inches of snow again. We definitely need it.

Well since spring is around the corner, that means golf at our house. Brad had try out every day for the past two weeks and has enjoyed every minute of it. And Trevor has decided to take up golf too. Several of his best friends are also getting into the sport so he has been out several times trying to learn as much as he can. He took golf lessons a couple years ago with his cousin but I’m not so sure he actually remembers anything. Trevor becomes a teenager on the 30th and guess what he wants for his birthday? Golf clubs! And shoes of course. I’m glad he’s found something else to do besides football since he gave up baseball this year. And it’s a fun thing he can do with Brad on summer break. Sidney has one more volleyball tournament at the end of the month then she is done with the club season. She’s done very well and was so excited to win a tournament last weekend. There are five girls who are going to form a 4v4 summer team so she will keep at the sport year round. I just love some of the girls on her team and thankfully they live close by so she can spend a lot of time with them. Ryan is well and doing his usual thing of weekly PT and OT. He seems to be enjoying his physical therapy sessions in the pool; Travis sends me videos every week since I can’t go with them. Travis has been busy picking up some extra hours at work when he can which will help with the kids’ summer camps coming up and all the clothes we need to buy them. They just don’t stop growing and nothing seems to fit from last summer since they have all had significant growth in the past few months. I don’t remember them outgrowing their clothes like this last year. I had the opportunity to speak at a MOPS group (Mothers of Preschoolers) on Friday and shared our journey. I enjoyed it very much and especially appreciated the memories of all the times God has been so very faithful to provide over the years. We have been so very humbled to have our needs met continually – sometimes in amazing ways. Work is good for me, and I am very much enjoying me daily morning workouts at the gym before heading to the office.

Here are a few pictures from this past week. The first three are from our fishing excursion last night and the last one is from the photo booth at the Make a Wish party we attended last weekend. Enjoy your day!

We have some friends whom we have known for years. Jason’s mom and my mom were good friends in high school and we ended up going to school together (with Travis) for all of junior high and high school. In fact, Jason’s older sister, Angela, and my older sister, Carrie, have been close friends all these years as well. Jason was a very dear friend and I remember doing all kinds of fun things on the weekends together. Jason was the best man in our wedding twenty years ago and Travis was then a groomsman in his and Kara’s wedding several years later. While time and miles have separated us, some people will always hold a special place in our hearts and the Tippetts are some of those people. Kara, Jason’s wife, has been battling metastatic breast cancer for a few years now and has kept a great attitude reflecting her faith in Jesus Christ. On Tuesday, she started something new – a link up of blogs (the link to her blog is at the bottom of this post) and while I wrote a post for it, I didn’t publish it. I don’t really have a reason why, but I just wasn’t ready to put it on here. But here it is today. A letter to the future me.

Dear Me….in 2024,

Some days I can barely imagine the passing of the next ten minutes so to think ten years ahead is a long shot my mind doesn’t want to wrap around. Oh I certainly dream big dreams and fight big fears all in the same breath. I dream of easy days, laughter, worry free finances, happy healthy kids, the squeals and coos of grandchildren, lazy Saturday mornings with my sweet husband and unlimited time and money to spend baking whatever I want. But I also know perspective. It’s something I’ve learned well in the hard days behind me and I’m certain perspective is going to carry me to you in 2024.

My today means I get to love my Travis. God has been so faithful to keep us strong, to bind us together in Him. Oh we have days when we want to wring each other’s necks and I’m certain that will never change. But most of the time, he is my strength and comfort, my greatest accomplishment and biggest gain. It’s a privilege to be his wife and I can only hope you do a better job than I do now of reminding him how much he means to my heart. And I also get to love on our four beauties every day. I cherish their smells, the way their bodies uniquely crump and cross as they relax on the couch, the familiar looks that speak a thousand silent thoughts, knowing who will go to bed last, who will leave crumbs on the kitchen table, how tight and how long their hugs will be, which child will have the messiest room and the one who uses the most shampoo. I know their tender hearts and desires to reach lost souls. I relish the laughter, the silliness they all inherited from their dad, the ability to never take life too seriously and always turn any conversation into a pile of laughter and jokes. It’s those little intricacies that make life fun because with my teenagers sharing my space, life is never boring. And I wouldn’t change a thing because every day of joy and laughter and conversation is a complete gift.

The littlest of them all is the quiet one, but only because his brain is incapable of the spoken word. He is the glue. The thread that sews us all together. But you know this. You remember the pain of medical failure. Your heart longed for easier days. Your mind couldn’t wrap around the idea of him not being here someday. And maybe that day has come to you in 2024. Maybe our sweet Ryan has met Jesus. Today, in my finite, anxious mind, I imagine he is already gone from you. I imagine you visiting his grave, cherishing the pictures and videos every single day, giving tears to the pain and the loss, missing all the cuddles. Oh how that makes my heart ache. My mind simply can’t hold on to the hope that Ryan will still be with me in ten years. I don’t know if that is my failure to believe God will let me hold onto him for so long, or if it is my awareness that He only intends for Ryan to be here for a short time. And what does it matter really? He is here to do God’s work, to fulfill all the things our Heavenly Father has for him, to make his mark for Jesus in the way only he can. I just get the enormous privilege of being his mommy. Remember the shock, the strike to the heart, the inability to take a breath when that doctor told us Ryan shouldn’t be alive? That he expected him to be a vegetable by now? And here we are two years later. It just goes to show the future isn’t ours to tell. It isn’t ours to guess, to dictate, to predict, to assume. Only my Jesus knows all these answers to what is coming. Only He can calm the anxious, fearful heart that longs for peace, for easy, for clarity. The days ahead are unknown, and I have come to believe He holds our tomorrows so that we have no choice but to hold onto Him. It’s faith in weakness. It’s trust in unknowns. It’s grace in worry. It’s love in daily tasks.

I know for today, my heart begs to believe you are living at Ellisbrook right now. Are there trees and a brook running through the acreage? Is there a pond? Those are my prayers. Do you remember them? My pleadings with God to provide the means to let us love on disabled adults in our home. The dream born out of our love and care for Ryan. To be surrounded by the love of several mentally disabled adult males who need safety and love and security and routine and family. To be chasing chickens, gathering eggs, fishing in the pond, teaching manners and cooking basics and how to tend the garden. Showering them with grace and God’s truths. Memorizing scripture together and teaching forgiveness. Planning details and throwing the grandest parties. I pray that when I arrive where you are, God has given Travis and me the desires of our hearts to fulfill our dream of Ellisbrook and to expand in His timing. I pray our older kids are involved too in some way. Today they want so badly to be in the country caring for these men before they all leave for college. But I have learned God moves in His timing not mine. He provides the means though His creative gifts. And while we are not there yet as our hearts desire to be, I am holding firm to my faith believing that God’s dream in our hearts will soon be God’s fulfillment of His promise. I pray that in the ten years to pass from now til you, God moves in mighty ways to fulfill our desire to serve Him by caring for these precious souls.

May grace find you, Kim. May you never forget the mercy so freely lavished on you every day. May you always remember the love, the smiles, the answered prayers, the good, the legacy of God’s faithfulness to provide at all times, the testimony He calls you to live. The truth is this….I have no clue what the next ten years will hold before I reach you. I don’t know who will be traveling the journey at my side. I can’t imagine how I will get there or what the path will look like. But I am certain God will never leave me. My job is quite simple. To glorify God at all times. When it’s easy. During stress. On days when I can barely get out of bed and find the strength to fight. While celebrating the little victories. In fear of the future. Through tears of loss. Even when I want to choose selfishness. I simply want to be joyful in the years to come. Whatever my life looks like, whatever defines my circumstances, I simply want to be filled with joy and reflect Christ’s love, the truth of salvation and the hope of eternity.

Promise me, Kim, no matter what comes, no matter how easy or hard life gets, no matter who is at your side, you will stay faithful to the calling God has placed on your life. Remember the hard so you can relish the blessings. There is so much good. Don’t ever stop finding it.

Last June we spent a beautiful week on the Atlantic in Foley Beach, South Carolina. Beauty in its purest form. Sitting on the deck watching the tide rush in as the waves crashed against the rocks, seeing the sun set and the night settle in…that was my rest. I remember waking in the morning and how the kids loved to run out and step into the salty ocean as it repetitively hit against the steps as the sun danced its way into the bright blue sky.

And this week I thought back to the rhythm and routine of the ocean waves, of the tide rushing in then gingerly dancing back out to expose the raw, untouched ocean sand. And that’s exactly how my heart felt. I very much felt the slam of the waves against the rocks, the movement of the moss and shells back and forth, back and forth as the warm ocean water rushed over them. This week has brought loss to my heart. I sat on the couch Wednesday night and was slammed with a wave of emotion as it hit me once again just how much of Ryan I am losing. Ever so slowly, he is fading away. I miss his voice. I miss how he would put his soft bare feet in my face so I would rub them. I miss him grabbing my hand and putting his arm on my hand so I would rub and scratch him just the way he likes. I miss the contagious laughter that fills a room and makes the light brighter. I miss him grabbing my shirt and pulling me close for a nosey kiss. My moments of interaction with him are fading like a setting sun. Like watching the changing tide, one minute the water is tickling toes and at the next glance it is ten feet away. The lapse between here and there happens so quietly one doesn’t notice the span of time and space. It’s a slow, gentle fade, such a movement and change I can barely catch my breath upon the realization that time continues to steal him away. I want to be selfish and yank Ryan into my arms and never let go. Make time stop. Enjoy the smell of his hair, the gentle touch of his soft, silky skin, take in his own unique scent, gaze into his eyes and memorize every line and curve of his face. Fear envelopes me and I have to fight so hard not to give in to the overwhelming sense of loss. Fighting the change is like telling the sun not to rise, settling the ocean to a calm stillness. My heart wants to go back, take it all in once more, search for the moments I lost, experience life with Ryan again, get a redo. But God doesn’t give us a do over. He gives us eternity instead. And that is the perspective I have to force my finite mind to embrace. Eternity with Him. It’s a gift yet in our humanness, we can’t imagine how amazing it will be, how small and temporary this life truly is. Loss is part of life.

My dad called me Thursday and said his wife’s mom was dying. Hearing my dad cry is hard on this daughter’s heart. And while I love the vulnerability, the openness and trust that allows him to give me those emotions, it broke my heart to hear the pain and hurt in his heart. He loves Donna’s parents as his own and they have loved him well. And 81 years of marriage. How many get the chance to be so blessed? They were loved by many and now he must walk the rest of the journey alone. How does one take the next step, the next breath without your love at your side after so many years? How does one separate self from spouse? I can only pray his last days are few, his moments full of beautiful memories and cherished love. He has loads of family to love on him, trusted caretakers to help him do whatever comes next each day. But most of all, I pray God’s blessing on his 100 year old heart, His faithfulness for the rest of the journey that leads him to his love and to our Savior. My tears are for the beauty of a marriage done well, of a union that spanned the hard, the good, the ups and down, the beauty of forgiveness and the moments of comfort. On Monday I get to love on both my sisters as Amy and I grab Carrie from the airport and grasp onto every single minute together until Carrie must return to her DC home. I’m looking forward to our sister moments when we get to share hearts, wipe tears, enjoy laughter and remember a life lived well. The occasion for togetherness is sad, but the blessing of family will be cherished as we make the most of our 24 hours together.

It is my privilege to share the testimony Sidney is giving at youth group on Wednesday. Each one of my kids has a wisdom beyond their years, and I know it is simply part of God’s plan to prepare them for the road ahead. I am amazed at how God has and continues to use them for His glory. When I was in junior high and high school, I didn’t have anything remotely close to the mature life perspective these kids have. Our road may be marred with hardship and uncertainty, but God has blessed us in the things that really matter – faith and family. I am completely humbled by what you will read. I pray it moves you as well. What is your “Ryan”?

Topic: What Ryan has taught me about God and life.

Background: He was born with special needs and is diagnosed with autism, epilepsy, and cerebral palsy. He has gone through 8 surgeries in his life and he is now 10 years old. He is like a 1 year old in a 10 year old’s body. Ryan can’t talk and he has over 100 seizures a day.

What Ryan has taught me about life:

-Not everything in life is fair.
I used to and still do at times struggle with comparing my life to my friends. A lot of them live in big houses and have name brand clothes. They get to take big nice vacations often. With Ryan we can’t do that because of his medical needs.

Other times my friends ask if I can hang out or go somewhere and I can’t because I had already committed to watching Ryan while my parents either worked or went out with friends or had to go somewhere else. Honestly I used to wish he was normal so I could do some of those things. But when it came down to it I have realized that Ryan is a huge blessing to me and has taught me so much that I would never ever want to trade him for anyone else.

Isaiah 58:11- The Lord will guide you always; he will satisfy your needs in a sun scorched land and will strengthen your frame. You will be like a well-watered garden, like a spring whose waters never fail.

Through everything with Ryan God has brought our family a lot closer. My brothers and I almost never fight and we love to hang out with each other. We have learned that we have to because if we don’t Ryan gets stressed out. I know that I can trust them with anything and we know we can turn to each other in any situation.

What Ryan has taught me about God:

I didn’t really know or trust God until Ryan had his 3 major brain surgeries. It was always what my parents believed and told me. I felt alone during this because I didn’t feel like I could turn to anyone to talk about how I felt and I didn’t feel like my friends would understand and I didn’t expect them to. It was my first year of going to dare2share in 6th grade when I realized that I did have someone I could turn to and that God would always be there listening and caring for me no matter what. It was that weekend I accepted God into my life and started a relationship with him as my own and not for what my parents believed but for me. I feel like it was Ryan being in the hospital then that helped me seek a relationship with God.

Ryan has also made me realize that God does everything for a reason.
He put Ryan in my life for a reason
He put him in our family for a reason
He put him through the surgeries for a reason

Proverbs 3:5-6- Trust in the Lord with all your heart and lean not on your own understanding; in all ways submit to him, and he will make your paths straight.

Prayer is powerful
I prayed with my family and constantly during the day that God would help everything go smoothly and it did.
Ryan has big seizures and fell on his leg and wouldn’t walk and I prayed that nothing major was wrong and nothing was (he just sprained his ankle).

He has also taught me to trust God that he knows what he is doing
I often ask myself: Why Ryan? Why my family? What did he do to deserve this? Why couldn’t it have been me and not him? Can’t I trade spots with him?

Psalms 25:9- He guides the humble in what is right and teaches them in his way.

Everyone has a Ryan in their life. Mine just happens to be my brother. What is your Ryan? Is your Ryan you getting bullied at school? Or your parents getting divorced? What about you struggling with depression or thoughts of suicide?

Isaiah 41:10
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.

This is from the back of Sunday’s church bulletin. It’s the older three kids, along with several others, enjoying Dare to Share a couple weeks ago.

And this little squirt discovered the dryer last week and had a great time watching the clothes go round and round and round. It’s the little things…..

The other day I saw a picture on facebook that I think everyone can relate to ~

Dear winter, I’m breaking up with you. I think it’s time I start seeing others seasons. Summer is hotter than you.

Now can’t we all relate to that? It was five degrees when I left the gym this morning and that’s a bit too cold for my liking. Everyone is complaining about the varying temps and frigid days; I’m just so grateful for the moments when I look outside and see the sun shining. But without this season of cold, we wouldn’t fully enjoy the entrance of spring when new life appears again. I happen to like the four seasons. There is something unique in each one to look forward to. It keeps things moving and changing. Each season brings such uniqueness to the mix just as every personality in a family makes a whole unit.

For us, this season means putting on our fight. I’m fighting our insurance company to cover a new medication for Ryan. It’s the newest seizure med and acts on different receptors in the brain than all the other seizure drugs. But insurance doesn’t want to cover it. Well they don’t know how stubborn and head strong this lady is and that I will fight to the death when I feel strongly about something. I do appeals for the state so I know how these go which makes me not at all uneasy about filing an appeal with our insurance. Basically that means my case – to get coverage for Fycompa – will go to a hearing, much like a mediation when people get divorced or fight over custody of their kids. It’s a quality of life issue at this point as it’s been for the past two years since Ryan’s last brain surgery. There isn’t anything else to do for Ryan but after the week he’s had, he needs this drug. It’s our only hope of getting some control over these seizures that are ravaging his body. And even if it only works for a couple months, I’ll take it. As I was typing the appeal letter and explaining why Ryan needs this drug, I listed all the seizure meds he has been on just to show them that we have tried everything we can and need this new drug. I listed 23 seizure drugs. Twenty three! People are considered a medical failure to seizure meds after trying only 3 or 4. But like I said in a previous post, how do we stop? How do we say enough when we still have fight left in us? When Ryan is still so full of life in spite of his seizures.

On Friday Ryan had a big seizure again that threw him to the floor. He spent the weekend refusing to walk on his left leg which made for a difficult weekend for everyone else because trying to carry 100 pounds of dead weight is not easy. Thank God for Travis and Brad who can handle his bulk. It’s not like we can tell Ryan to crawl wherever he wants to go; he doesn’t understand and it would be like giving directions to a 12 month old. That’s as easy and telling a rock to jump. Occasionally he would take a few steps and actually did a decent amount of walking on Saturday night but nothing was consistent. On Monday Travis and I took him to the doctor for xrays of his left leg and thankfully nothing is broken. He is now finally walking again although he’s spent all his time away from home in his wheelchair. Black eyes, sprains, bruises…it’s all becoming our new normal and I’m not liking it one bit. But I can’t put him in a bubble and there is nothing else to do. It’s frustrating and heartbreaking. Feeling helpless and out of control is not something most people are good at, and while these seizures that throw him to the ground and off of furniture are Ryan’s new normal, they still hurt this momma’s heart.

The older kids are all doing great and have registered for fall classes. I can hardly believe we will have two high schoolers next year and two in jr high. Boy has the time flown by. I’m so enjoying these teenage years in ways I never anticipated. I thought it would be much harder and frustrating, but I’m finding we simply get to enjoy the blessing of young adults who are engaging and fun. What a privilege.

Self control. It’s my word of the week. As I weigh in today, I’m grateful for the ability to learn from my failures, to grow from my weakness, to stretch in my fear of failure, to thrive in my victories. As Rick Warren said, “Self control is like a muscle. The more you use it, the stronger it gets. Over time your brain will make better choices more automatically. What will you intentionally do this week to implement this powerful principle?” We all need self control in areas of our lives. For me, eating is one of them. I’m not shy about it and have gotten over the “what will people think of me if I’m real and admit I’m an emotional eater?” thoughts. Because you know what? We all have weaknesses. We all have hidden hurts. We all have vices to cope. We all need self control. And we all have our own unique story to tell. I learned in my teen age years to deal with pain by eating. Or not eating depending on the season of my life. And after Ryan was born and the stress of his issues grew, that old familiar crutch of emotionally eating crept back into my life. So here I am in my early 40’s getting older by the day while trying to get my body to shrink. Add in my slow ride to menopause with my dropping estrogen levels, and it’s just a party in the making! I’m sure I could find a funny Erma Bombeck story on this if I looked. It’s harder than I wish it were but I’m getting there. One day at a time. One choice in self control after another. One small victory in hand. And what I’ve admitted to myself is this – eating out of emotion gets me no where but miserable. Because while that instant gratification feeds my mind, it does nothing for the issues of my heart. God calls us to self control. It’s a fruit of the Spirit and one He gives freely. We simply have to make the choice to put our own ambitions, selfish desires and inclinations toward instant gratification aside and press on to one good choice at a time. Whether you need self control for eating, like me, or for keeping pure thoughts or taming the tongue or managing your finances or staying patient or keeping your eyes from lust, self control is only one simple choice away. I love this from Billy Graham –

But when the Holy Spirit controls our lives he will produce this kind of fruit in us: love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control….Galations 5:22-23
Christ can rid you of inner conflict. Man without God is always torn between two urges. His nature prompts him to do wrong, and his conscience urges him to do right. Antagonistic desires and crossed-up emotions keep him in a state of personal instability. Medical men have almost concluded that this conflict is the basis of much physical breakdown and nervous collapse. Many doctors now believe that among the contributing causes of the common cold are stress, tension, and inner conflict. Paul must have been in the midst of such a personal civil war when he cried, “O wretched man that I am! Who shall deliver me from the body of this death?” Then he answered his own question when he said, “I thank God through Jesus Christ our Lord.”

Happy Wednesday everyone. You are loved!

My week is off after having a paid holiday yesterday so it feels like Monday. But I’m all about a three day weekend so it’s all good! Here are some random musings for your Monday. I mean Tuesday.

* My sweet Trevor is doing great. I sure enjoy him these days. Every age has its challenges but I have to say, he is a delight. He has the sweetest friends, helps around the house without grumbling and engages in the most interesting conversations. Next month he officially becomes a teenager and is in another growth spurt. One more to pass me up in my quest to become the shortest member of the family.

* All together now – holy tailbone pain! Sidney and I left my friend’s house at the lovely time of 6:30 am yesterday to get downtown for her 7 am volleyball warm up. What we couldn’t see was the layer of thick ice under the freshly fallen snow. As Sid attempted to walk down the cement stairs outside the front door, and failed miserably, she landed on her tailbone and smacked her low back on the edge of a step. In my quick attempt to come to her rescue, I followed blindly and also fell on my bum. So we are both hurting today and very stiff. We were both belly laughing as I got in the car after scraping the ice and falling a second time. What else can do you if you can’t laugh?! I’m sure we were a sight to see completely covered in snow. Then my sweet friend fell on the driveway too about 15 minutes after we left. Too bad she didn’t get the text message I sent her warning her about the ice rink they call a driveway. Needless to say, I’m impatiently waiting for spring so we can open the windows and plant flowers. My pots on the deck are very lonely.

* Brad likes his job at HyVee and is really enjoying the paychecks. I remember those days when a $135 check made you rich! Now we can’t even buy a week’s worth of groceries for that amount. He is anxiously waiting for spring with me because that means it’s time for golf and if there is anything Brad loves, golf ranks up there as a favorite.

* Boring. That’s just how I like it too. Travis and I are boring. There just isn’t anything new with us and I’m perfectly content to keep it that way as long as I can. These seasons of nothing are cherished times because it means we are doing well. The older I get the more I appreciate that cute guy at my side.

* Make A Wish! It’s officially happening. We are headed to the Florida Keys in June thanks to the generosity of everyone who donates to this amazing cause. Excited, humbled, blessed. It’s hard to put into words what an amazing opportunity this is for our family, definitely one we would not be able to do on our own. We know the resort we will be staying at but don’t have specific dates yet. Having never been that far south in Florida, it will be a fun adventure for all of us. The conflicting emotions of such a once-in-a-lifetime-trip have been difficult at the same time. Because going on a Make A Wish trip means I have a child with a terminal illness. A nameless, cureless, slow progressing, life sucking disease. And I didn’t expect the swell of emotions that came after the wish granters left our home last week. While we are all looking forward to this time away as a family, it’s hard to ignore the blaring, flashing sign that says “you have a sick kiddo”. On a day to day basis, I don’t look at Ryan and say “oh yeah, I forgot you could die from your seizures at any moment”. The realization is always tucked away in the corners of my heart, but I don’t dwell on it. That kind of thinking just doesn’t fit into my day to day life. So yeah, I’m excited, but it’s so bittersweet at the same time. Sometimes the tears just flow so easily.

* Other summer plans include Trevor going back to the FCA (Fellowship of Christian Athletes) leadership camp he attended last year and had an absolute blast at. Sidney plans to detassel again and get some volleyball in, and Brad will do his usual thing – work, golf and get ready for football. A weeklong trip for the three of them to fly to Idaho is in the works too if we can get flights cheap enough. Travis’s brother and family live in complete beauty and want them to come. I wish we could all go as we originally planned but with this Florida trip, I simply don’t have enough vacation days for both trips. The joy of a new job is having to build your vacation and sick banks.

* Sidney had a three day volleyball tournament in Omaha this weekend and did great. She is so passionate about the sport and really gives it her all. Right now all she can think about is going to high school in five months – it will be here before we know it – and is so done with junior high. I remember getting antsy for the end of the school year to come once second semester started.

* We are in wait mode with the newest seizure medication, Fycompa. Our insurance company doesn’t want to pay for it and who can blame them? It is brand new and retails for $4450 a month. Of course no insurance would agree to pay that much but it’s obviously not cheap. I’m just hoping they will cover it so we can at least see if it helps at all since it has a different mechanism of action than all the other seizure meds on the market. I have a hard time believing anything will work long term since Ryan has failed on 19 other meds, but it’s all we have. His seizures are the same and nothing really changes with him day to day. Really that is a good thing because anything that changes means something is wrong and we don’t want another hospitalization for prolonged seizures or a bowel obstruction. His baseline, while precarious, is better than the alternative.

* I’ll leave you with this – today is Tuesday, February 18th, and it’s 66 degrees outside! Two of my work friends and I walked around downtown Lincoln on our lunch break and it simply couldn’t have been more beautiful. I’m glad it’s not Monday after all!

I’m not gonna lie. It’s been an emotional week on the homestead. The issue of putting Ryan on the latest seizure drug came up after a phone call from our doctor’s office. Then I talked to a new friend in Bellevue who is trying to pass Will’s Law to make medical marijuana available in Nebraska. Every time we talk of changing things with Ryan’s regimen, I get emotional. That chronic grief rears its ugly head. Again.

When we saw Ryan’s seizure doctor last, he was ready to travel to DC for the national epilepsy convention where they were rolling out the newest seizure med – Fycompa. This medication has a different mechanism of action than any other seizure med on the market, and our doctor wants us to try it. I’ll be completely honest and tell you my attitude is very much this. Why the heck not. If it gives us two or three months of decreased seizures, then it’s worth it. But I don’t believe it will work long term. They never do. I gave up on drugs a long time ago. And they often come with nasty side effects; so bad we have had to take Ryan off of several medications because we couldn’t get him to a therapeutic dose because of those side effects. Things like sleeping for 20 hours a day, not being able to walk because he is so drugged and out of it, falling over when trying to walk. And this new drug has the potential for all those same effects – aggression, dizziness, vertigo, problems walking, sleepiness, feeling tired, falls. These new drugs have never been a win-win situation for us. They are more like a try-fail. But if we never try, we don’t find out if something just might have even the slightest effect on our raging battle for control. It’s the emotional upheaval every new drug brings that is hard to prepare for. We gear up, put on our game face then end up disappointed when nothing changes except the amount of pills we have to prepare twice a day. The fact is, Ryan’s epilepsy is malignant. Yes, it will kill him some day. There is no cure. There is no hope of recovering the years of brain damage he has. There is no magic moment when we will ever say “we did it!” we cured him!”. And I can live with that. Sadly, emotionally, grieving, heartbroken and frustrated. Yes, I can live with knowing my Ryan will die younger than he should because there is no cure. But what I can’t live with is that nagging, pestering feeling in my gut that I can’t give up on him. That I can’t give up on any drugs that just might give him a better quality of life than he has now. He’s got a lot going for him. He’s loved, he’s spoiled, he’s attended to (sometimes too much so), he’s happy and well cared for. But he still falls. He still hits his arms and legs and head and rear end on the floor when the big ones come and throw him to the ground. His brain still seizes non stop. All day, all night. We only see a few hundred of them a week but inside, where no one sees, they are relentless. I know for certain is it solely by the grace of God Ryan hasn’t had a head injury yet from his seizures. With four craniotomies, he has a lot of weaker spots in his skull where injury could easily cause a skull fracture. He has one fourth of his brain missing where fluid fills the gap and a strike to the head could cause shifting and swelling. So how do we stop?

It’s one thing to say no to more surgery. And the doctor wants to do another brain surgery on him. But we have said no. We have put our foot down. We have already put him through four of those invasive, intensive surgeries. And a vagus nerve stimulator. And 19 medications. And several diet changes. And vitamins and herbal remedies. But what about medical marijuana? We’ve raised the questions several times over the past few years in curiosity and intrigue. It’s legal in twenty other states, but not here. Not for seizures. Please don’t be naive or judgemental or jump to conclusions. Do your homework. Read the articles below. Be open minded. We aren’t talking about weed or pot that gives people a high. This is about the oil, the process of straining out the cannibidiol for medical purposes. No high, just soothing, purposeful effects to slow or stop epilepsy. It works for many people to control seizures, to help with the devastating effects of nausea from chemo, to control pain, to give relief from the horrific effects of MS and other diseases. I was blessed to meet a new friend by the name of Shelly Gillen who some of you may have seen on the news or in the paper. She is an advocate and initiated Will’s Law to legalize medical marijuana for epilepsy which was actually pulled recently during the ongoing legislative session because it couldn’t get the backing it needed. She is also a lifelong friend of someone we went to high school with who happened to connect us. Thanks Julie. UNMC is the only level 4 epilepsy center in the state and the law needed their backing but they wouldn’t do it. They wouldn’t back the bill. There is a hearing at the capital on Wednesday I am going to attend; I’m not going to testify but I will write a testimony to be admitted at the hearing. We aren’t even sure if we would put Ryan on cannibidiol oil if we could – we probably would – but the point is this. Right now giving it to him isn’t an option because it’s illegal, but it works. It’s effective. It’s proven by many other desperate parents out there who only want to give their kids the best chance at a great life they can give them. They are loving, committed, hurting parents just like us. They want to soothe the ache, they want to see more smiles, they want to hear more laughter, they want to ease the stress that living with hundreds of seizures a week brings. It’s not easy to do this thing called raising a kid with special needs. Some days feel unbearably painful while other days feel tolerable and the worry and difficulties seem minimal. But it’s always there, lurking in the corners of every room. A parent who has watched their child suffer from any life threatening illness knows the grief, they know the horror of being helpless. They understand the emotions and the ebb and flow of futility. They live the lonely road. Because every one of us has tried. And tried. And tried. How do you give up on a life so trusting and helpless and innocent? Why do you stop when there are options out there even when they are out of reach? When do you say enough? We simply don’t. We put one foot in front of the other, fighting and pushing and screaming and crying and praying without ceasing. We dream big dreams that we know will never come to pass. But we never stop believing. Hope is always present. And if and when the day comes when the doctor says, we’ve done everything we can, and we know Jesus is calling him home, then we give up and let go. Because on that day, whenever it may come, we want to be parents who gave our all, who fulfilled the promises we made over and over again, who loved and sacrificed and begged for answers and solutions, who did our very best. But until that day approaches, how do we stop?

It’s the churning of the wheel. It’s the fog that doesn’t life. It’s the breath to be exhaled. Life is truly what you choose to make of it. Perspective. Bad things happen. Difficulties can’t always be fixed. But joy can always be discovered in the mundane, in the daily grind, in the beating of a heart that simply refuses to stop.

I don’t know what tomorrow will bring. And neither do any of you. Some things fade away while others spring to life. Decisions come and go. And at the end of a day, at the end of a season, at the end of a journey, this I know to always be true. God simply knows best. My finite mind doesn’t begin to comprehend His plans or His reasoning. But trust is my armor. Salvation is my footing. Grace is my compass. Love is my guide.

If you care to read…..
Charlotte’s Web:
http://www.cnn.com/2013/08/07/health/charlotte-child-medical-marijuana/
Will’s Law:
http://www.ketv.com/news/parents-believe-medical-marijuana-could-change-sons-life/23254136
http://www.thedailysheeple.com/parents-want-medical-marijuana-for-son-its-not-a-political-issue-this-is-a-compassion-issue_122013

Life is good, and there is nothing new to report in this neck of the woods. As Atlanta is bottle necked and completely paralyzed from 2-3 inches of snow right now, we are sunny and chilly with dry ground. I wish we had snow; we certainly need the moisture. But snow we have not had much of so far this winter. I’m guessing it will all come in April when people are outside trying to golf and get back on their motorcycles. I mean seriously, how does a city shut down and everyone abandons their cars with 2 or 3 inches of snow?! And sleeping in a CVS because they can’t get home. Geesh! It seems completely ridiculous to me, but we are smack dab in the center of the Midwest where people drive to the grocery store in the middle of a blizzard without blinking an eye.

So we have new carpet which is heavenly. We didn’t realize how little padding we had until we stepped foot on the new stuff. Then I thought, oh geez, this carpet really was bad! No, I knew it was really bad all along. I just pretended to ignore it. And we have new kitchen floors too which are wonderful. And a fresh coat of color on the wall. I think that’s enough new stuff for a while.

Speaking of new, I am really feeling very old. Not new at all. My body is cheating on me I think. It’s like I’ve been neglected and left for something better. I’m not too sure if it’s the beginning of menopause or my thyroid not working or maybe a little of both, but I’ll tell you this. This getting old stuff is for the birds! Everything is out of sync, nothing happens when or like it should. I’m not enjoying it so much. And the funny thing is, all my family and friends who have gone through this can’t remember much what it was like. Oh everyone seems to remember the hot flashes, which I don’t have….yet. But all the rest seems to go to the “forget me” file in their brains. Sigh. I guess I could hold on to the saying “this too shall pass” but it’s not passing very fast so that doesn’t seem so appropriate. OK, for example, in spite of the fact that I exercise religiously every single morning before work, and I even have my own locker at the gym which is very convenient I might add, my body isn’t shrinking. And yes, I’ve changed my diet and am eating smaller portions and yes, they are healthier too. It’s depressing. Everything slows down to a turtle’s pace when you get old. I don’t like it so much. But there is a silver lining and it’s this. My husband still thinks I’m a beauty. He still grabs my butt. And he still thinks I’m sexy. So while I might not like my body in its current condition at the moment, I have to remember there is so much more to life than having a thin waistline. I’m working on it and I won’t stop. And I sure as heck will get there some day. Hopefully my doctor will have some answers for me next week. In the mean time, I’ll stay friends with the weights and elliptical machine and keep moving my feet while watching Good Morning America every day. Pandora is my work out pal too and I love to blast the music. I just have to remember not to sing out loud. That’s kind of hard for me. We McClintick girls like to sing to our music. A lot. I’m pretty sure no one wants to hear my yell out “your an overcomer…stay in the fight til the final round” while sitting on the hip sled.

So yeah, I’m kinda blah right now. It’s like a recipe. A dash of cold winter days plus a cup of getting old plus a pinch of an alien living in my body mixed with some unmet expectations (self induced of course) and some grey hair added too. Bake for a while and you’ve got one crazy lady! No really, it’s not that bad but I do like to exaggerate about the joys of getting old. And if I calculate right, I’m probably only half way baked so I’ve got a lot of time left in me. Hey, it could be worse. I could be eating dates and drinking prune juice every day before putting on my polyester outfit and velcro shoes and heading out on my scooter to have my hair dyed a nice hue of blue. How’s that for a stereo type! If you can’t laugh about yourself then what have you got?!

I guess I’m just kind of going through the motions in a lot of ways. My quiet time with the Lord is blah. I’m there but I feel like I’m talking to a wall, and walls don’t talk. At least the walls around me don’t talk but maybe yours do. I love my job and that is going great. My kids are wonderful, engaging and the light of my life. My husband is pretty awesome too. And I’ve had time with friends and even have several more girl dates on the calendar to look forward to. So it’s not like I’m depressed. I just simply don’t like me so much. Or more honestly, I don’t like the shell that houses my soul. It’s not changing like I want it to. It’s not listening to me. It’s not obeying when I tell it to shrink! So there you have it….me weighing in.

Like Erma Bombeck once said…..

Diet Totals 758-Pound Loss

I have dieted continuously for the last 2 decades and lost
a total of 758 pounds. By all calculations, I should be
hanging from a charm bracelet.

I have done a lot of kidding around with Weight Watchers,
but it is the only organization in which I ever lost a
great deal of weight. But I fought them. Every Tuesday
morning, a group of us had to “weigh in” before the
lecture. Our ritual was enough to boggle the imagination.
We got together a check list of precautions before we
actually stepped on the scale.

Bathroom? Check. Water pill? Check. Have you removed
underwear, wedding ring, nail polish? Check. Set aside
shoes and earrings? Check. Are you wearing a summer
dress beneath your winter coat? Check.

The first week I stepped on the scale and my instructor
said, “You have gained.” (Next week, I cut my hair.)

The next week, she said, “You have lost 8 ounces,but
that is not enough.” (I had the fillings in my teeth
removed.)

The third week, I had dropped a pound, but my instructor
was still not pleased. (I had my tonsils taken out.)

Finally, she really chewed me out. She accused me of not
sticking to the diet and not taking it seriously. That
hurt.

“I didn’t want to tell you,” I said, “but I think I am
pregnant.”

“How far?” she said coldly, clicking her ballpoint pen
to make a notation on my card.

“Possibly 3 days,” I said.

She glowered. “Any other excuses?”

“Would you believe I have a cold and my head is swollen?”

“No.”

“How about I was celebrating the Buzzard’s Return to
Hinkley, Ohio and had butter on my popcorn?”

She tapped her pen impatiently on the card and stared at
me silently.

“Lint in the navel?” I offered feebly.

“How about first one to the trough?” she asked dryly.

I learned quickly never to argue with a woman who had the
scales on her side.

I saw my old instructor the other day and she eyed me
carefully and said, “When are you returning to class?”

“As soon as I have my appendix removed,” I said
returning her gaze.

I’m not sure, but I think I heard her moan.

Everyone wants to be the perfect package, a true beauty in all areas of life. Have a fit body, obtain the right job, give an appropriate response every time we speak, drive the newest car, live in a big house, have kids who behave all the time, wear fashionable clothes, take all the best vacations and be known as gorgeous. Yet that perfection, as unreachable as it may be, is what our human nature strives for. We want it all. We reach for unrealistic expectations. We stir up jealousy when our friend has it better than us. And then we take it out on ourselves when we don’t reach those impossible assumptions about what makes us worthy of love and acceptance from others and ourselves.

I have fallen victim to every one of those assumptions at one time or another depending on my circumstances. Some days and months and years have been better than others. And those lies have led to complete discontent, feelings of unworthiness, thoughts of hopelessness and eventually anger. Forecasting a future beyond reach breeds contempt and disregard for what the Bible says is true beauty.

I Peter 3:3-4 ~ Your beauty should not come from outward adornment, such as elaborate hairstyles and the wearing of gold jewelry or fine clothes. Rather, it should be that of your inner self, the unfading beauty of a gentle and quiet spirit, which is of great worth in God’s sight.

Over the years in my search of perfection and being ridiculously hard on myself along the way, in the valleys of sheer pain and situational grief, I learned to comfort myself with food. I savored the taste, I relished stuffing my face and filling my stomach until it hurt. I had cycles of binging at times. And for that short moment, I was satisfied. I was filled. I was happy. I was content. But then the guilt would wash over me and I would spend countless hours and days rehashing the terrible sins of my choices. I would punish myself for trying to fill the deep hurt with food that can not satisfy the soul. I knew better. But my actions didn’t change. It has taken years for me to face the demon, to demolish the stronghold, to openly admit my faults and struggles. But here I am, sharing my deepest pain with all of you. Not because I’m thrilled about being completely transparent in my struggles with overeating, but because I know beyond a shadow of a doubt the Lord has called me to share my journey. My hope in the sharing of my heart is twofold. One, for others to meet the Jesus who is healing my heart and two, to build a community of hope for those who are struggling with this same issue. I look forward to the work Christ is continuing to do in my own heart and the restoration taking place not only spiritually but physically as well. A part of me looks forward to the sharing of my story. There is a lot hidden in the layers of my heart.

Philippians 1:6 ~ And I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns.

So for the week ahead, remember this. Food will never fill your heart. Only Jesus can do that. He is true contentment. He gives joy in the midst of whatever difficult, life altering, painful situation you are facing. And then the peace comes. Yes, I won’t lie. Life will still be hard, but the journey is brighter, anchored in hope, moved with purpose, driven by the hope of eternity. If you don’t know Jesus, he is only a whisper away. Call on His name and ask Him to fill the void in your heart. He is faithful. He is true. He is the real deal. He is the only answer to the quest for a gentle, quiet spirit….definitely true beauty.

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

These past few months I’ve felt so blessed experiencing God’s favor on our family. I still struggle with this concept – believing God desires good for our family, for me, instead of sitting in wait for the next bad thing, the next disappointment, the next huge shock and blow, the next battle, the next season of uncertainty. I’ve trained my mind to sit in wait for a negative event to come crashing in. And in the process, I’ve missed so many opportunities to be still and relish the beauty of the blessing. I’ve caught myself thinking this won’t last; there is something bad coming; we don’t deserve this time of nothingness when there is no crisis or urgent, debilitating matter. It’s really quite sad that for the past ten years, I’ve allowed myself to sit in wait for the negative to come. So to retrain my mind to believe in goodness and peace has been hard. I find myself feeling unworthy of the blessing. With Ryan it’s simply been one thing after the next after the next. And through the journey of raising a special needs child, we have had other struggles along the way….some financial, some emotional, some work related but all of them spiritual. The solid rock, my firm foundation is established. I know beyond a shadow of a doubt Who gives me my next breath, Who has been faithful to carry us through every troubling storm, Who has blessed our socks off during those moments when we could hardly get out of bed every day. Those feeling of being unworthy are definitely not of God. I know where they come from as the Bible clearly states in Ephesians 6.

Finally, be strong in the Lord and in his mighty power. Put on the full armor of God, so that you can take your stand against the devil’s schemes. For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, and with your feet fitted with the readiness that comes from the gospel of peace. In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. Take the helmet of salvation and the sword of the Spirit, which is the word of God. And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the Lord’s people.

There is one very particular, personal and sensitive area I have struggled with ever since Ryan was little and all his problems started at the young age of four months. For several weeks now I’ve really felt the Lord nudging me to be vulnerable and share it here on this blog. I’ve been resistant to obey. Of course I’ve always been very transparent and have openly shared my heart on many topics, emotions and struggles. But this one area I have kept hidden in the darkness of my soul. But now I can’t escape God’s tug on my heart to share, to be honest, to risk judgement. So I’m going to do it. It’s the subject of emotional eating. And it’s no surprise this is an issue many people deal with but no one seems to want to talk about. And maybe for some of you, it isn’t emotional eating you claim as your hidden struggle. Maybe it’s unforgiveness, envy, addiction, jealousy, gambling, infidelity, pornography, lust, idolatry….I could go on and on. We all have something. So I’m going to take a huge leap of faith and openly share my thoughts, emotions, struggles, successes. I’m calling it Weigh In Wednesday. I know, creative huh?! It just flows so Wednesdays it will be. I won’t claim to share anything profound or new or shocking or exciting. But I will promise my thoughts and words will be written with encouragement, empathy and hope. God is working on my heart so I will “weigh in” every week, and I’m finally learning to relish the little victories whether physical, emotional, spiritual. Because one of these days all these little victories are going to become one giant success story of God’s goodness and provision to bring me to a state of emotional and physical health. My only goal in all this sharing is for God to be glorified. And anything else will simply be a blessing. So share this blog if you think someone else needs to read it. Pray for me as I reluctantly open up and spill my struggles. And give me the opportunity to pray for you too. Shoot me an email, leave a comment here, send me a facebook message. I still don’t know why I’m doing this and am moving forward with trepidation, but if God calls me to it, I need to obey.

Proverbs 16:3 ~ Commit to the Lord whatever you do and He will establish your plans.
Zechariah 4:6b ~ Not by might, not by power, but my my Spirit says the Lord.

There isn’t a lot to report around here but I thought I’d post some pictures since the last couple of times I’ve tried it didn’t work and I got some error message instead. These are just a few from Christmas morning. Ryan woke up long enough for us to drag him to the couch then he fell right back to sleep and didn’t wake again for several hours. The kids thought it was important to at least tuck his stocking under his arm so he could sort of participate.

This is Nathan, one of Brad’s very best friends, who lives in Denver and stayed with us for the last week of Christmas break. They had a wonderful time and unfortunately I didn’t take any pictures until he was ready to leave for the airport. We all love this guy!

And of course Travis had to get in there and photo bomb the two who were already being goofballs. It reminded me of when he photo bombed the next picture a couple years ago on Mother’s Day. That time I had no idea he was behind us. Yes, my husband loves to be silly. I never know what to expect from him except that he will make people laugh!

I was reminded again tonight that some day, these moments of laughter, being silly together, hanging out at home with all the kids and their friends, baking and cooking and grocery shopping all the time to keep the kids and all their friends happy….these are the moments that make life important. Spending time with the kids and their friends whether filling their stomachs or more importantly their hearts….these are the things that matter. Some day I will miss the noise and constant commotion so for today, I’m going to treasure the big things.

Happy New Year everyone. It’s a great day when you can start a new year with falling snow and Husker football! And even a few flakes fell this morning as I left the gym and headed into work. Like most people I tend to look back over the past year and evaluate how it went. Like usual, there were good things and some not so great things but that is the circle of life and very much expected. But at the end of the day, at the end of the year, I have far more items on my “blessed and well” list than I do on my “that stunk and was hard” list. And sometimes, with hindsight, it becomes obvious that some difficulties really do turn into blessings.

We’ve had some really fun times too. If there is one thing our family of six knows how to do, it’s goof off. There are a lot of people who would probably be uncomfortable with all the silliness that goes on in our home. We make lots of noise (some pretty gross), we laugh, we tell crude jokes, we make fun of ourselves, we have a great time together. That’s what family is about. Learning how to do the good times together in spite of the bad that also binds us. It’s all about perspective and as long as my kids know how to behave in public, then they can be as goofy and inappropriate as they want while inside our four walls. This is our home and home means acceptance and love.

And as I look forward to this new year, I am hopeful that we will have many more days of fun and laughter. I’m certain they will be sprinkled with seasons of pain but if there is one thing I have learned in the last few years it’s this. It is in the season of need, in the moment of sheer pain, in the panic of uncertainty, in the despair of an unknown that I truly meet Jesus face to face. I have many stories of meeting Jesus in my pain. I am convinced some of the hard things I have faced have come because I forgot the One I love. I am the first to admit that when my moments are sunshine and happiness for days on end, I find it very easy to forget Who gives me my next breath. I leave behind my Companion who never leaves me or forsakes me. I ignore my Rock from whom my foundation is never shaken. Because in those morsels of good, I find myself not needing my Savior like I do in the hard. I find in the good, I don’t give Him the time and energy and attention I do when I’m all alone and can’t see through the fog of doubt and hurt. I hate to admit it but it’s my truth. I am good at making it on my own when things are going my way, when life is good and predictable and easy. My independent spirit loves to come out when it’s sunshine and roses. But in the moments of need, I make the quickest turn to my Lord. Oh I never forget Him in the good. I don’t forget to spend time in the Word. I don’t lessen my prayers. But I also don’t seek Him and rely on Him with the same intensity when things are all right with my world. So I have really learned to appreciate the tough situations because they draw me to the One who is my strength. I’ve learned the most, grown the most, cherished my time with my Savior the most in the hard times. And I’m learning to have that same dependency on Him in the good too. But it takes practice. It takes discipline. It takes intention. I’ve discovered my mind tends to look for the next bad. I’ve trained my mind to do this. I’ve allowed Satan to creep in and fill me with expectation for the next difficulty. It’s sad, it’s disappointing, but it’s my truth. And now I have to undo the lies. Undo the lie that God doesn’t intend for good to happen because I don’t deserve good. The last ten years have been full of many wonderful, beautiful, blessed moments. I have been showered with love from my children and my husband. I have been blessed with wonderful family and friends. My community is loving. Yet I’ve seen so much injustice. So much pain. So many heart wrenching things happened to those I love that I’ve convinced myself I don’t deserve good. But I didn’t realize I was teaching myself those lies. And so here I am learning to rely on the Lord as much in the good times as I do in the bad. Yet I struggle with feeling worthy of the blessings and stress free days. So the journey continues of learning to believe that God does desire good in my life. That He is passionate about me. That He simply asks me to glorify Him regardless of good or bad, easy or hard, sunshine or clouds. Because every day is a blessing. I can learn as much in the positive as I can in the negative if I allow my heart to listen and believe. It’s a journey.

But as I talked about learning the most through difficult times, the “ah ha” moments when I realize how far I’ve come, how much I’ve learned, how strong my faith has become – well those moments often reveal themselves not in the midst of the difficult but when I am able to take a few steps forward then look back at the storm. It’s then that I see the hand of God on my life. It’s then that I feel His loving presence. It’s then that I know the hard had to come so I could shine the light of Jesus. I still don’t understand His plan, nor do I get to see what is coming next. But I will say this. He is good. He has a plan that is far beyond anything I can hope for or dream about or create in my finite mind. I don’t know how my tomorrows will play out, but I do know from past experience that because of the difficulties, I’ve grown in my faith. I’ve learned the true meaning of joy. I’ve experienced unconditional love. And I can honestly say I wouldn’t trade any of the hard these past six to ten years have thrown at me for more days of easy. Because beauty can be found in the midst of pain. Learning can be accomplished in the tangled web of uncertainty and hardship. I’ve learned to love my life. The good, the bad and the ugly. I’ve learned to cherish the love and acceptance of family and friends. I’ve learned to grasp the moments of laughter. I’ve found the essence of grace and the humility of forgiveness.

So whatever 2014 brings, I’m ready to face it. I’m ready to praise God in the sunshine even more than I have in the storm. I have big dreams for this year. I desire – and am working hard for – a body that is healthy and strong and fit. A temple of the Holy Spirit that is honoring to Him. I want to bless others whether it’s through a meal to their door or having a family over for dinner. I want to give with groceries or a gift card or a tank full of gas or time spent cleaning someone’s house. I want to learn to be a servant. It’s what I love to do. I simply have not taken the time to invest in others these past few years the way my heart desires to do. I want to spend more time in prayer with people. I want to memorize more scripture as a family. I want to learn a new skill, take a photography class, read more books, take up quilting again. I want to master the art of dance so I can two step in my family room with Travis. I want to spend a cozy night at a bed and breakfast with my love. I want to teach my kids what mercy looks like. I want to make memories with dear friends doing crazy, new things together. I want to exude a joy and peace no matter what life throws at me. I want people to see Jesus when they look at me.

So here’s to a new year and a new focus. Here’s to living with thankfulness. Here’s to enjoying every moment of good. Here’s to laughing til my belly hurts. Here’s to paying it forward and giving to others. Here’s to time with family and friends. Here’s to new opportunities. 2014, bring it on! May you be blessed and know how very much I love you all!

So tomorrow is new job day for me. If some of you missed it, I am starting as a program specialist with HHS in the Medicaid and Long Term Care dept. This is a huge transition for us on several levels. First, I am completely leaving direct patient care and going administrative. I’m not sad about that at all and am really looking forward to this new perspective on healthcare. Second, I’m working Monday through Friday day hours which neither Travis nor I have ever done. With us both having 24/7 jobs – police officer and RN – we’ve both worked some crazy shifts. I’m very excited to have some routine in our lives and know it will be good for everyone. I’m even going to start my days out at the gym then shower there and head straight to work. Hello 5 am mornings! I’ve started to love my daily workouts already and have decided it’s time to take care of me. For years I’ve focused on everyone else and have completely neglected my health. I’ve always been an emotional eater – it all goes back to high school and my days getting treatment for depression and an eating disorder (I’m not ashamed to admit that because those experiences have helped shape me into the woman I am today). I did great for years but once Ryan came along and, well…stress made food my friend. This routine and structure in my day – and even in Travis’s day at home – will be good. I do have to say though how much Travis and I are both going to miss each other. Twelve hour shifts have allowed for a lot of time at home together while the older kids are in school. That’s really the hardest part of all this change. But God has provided this job and I really think it’s going to be a good thing.

If there is one thing I have learned in the past three months, it’s this. Our Heavenly Father loves us so very much that He will open and close doors in His timing, often when we least expect it. It’s because of His passionate love for us that He often moves us on to something bigger and better. But the journey to that next best thing is often painful and teaches long suffering. I can now look several months back and see how God pulled me out of my job in the ER because I needed a big slap in the face. I had become ugly. My heart was so ugly. That is hard to say but it’s truth. Quitting that job was painful but necessary. I’ve changed in ways I didn’t know I needed to change. And it’s been a good thing but full of uneasiness and plenty of opportunities to trust God’s provision. On my bathroom mirror this verse is taped where I can easily see it every day…Proverbs 16:3 –

Commit to the Lord whatever you do and He will establish your plans.

The Lord established my plans alright but it certainly wasn’t in my timing. And now I am grateful for the wait. For all the moments of nothingness. For all the days of no work and no pay check. Oh I worked but with inconsistent hours. Yes, I’m grateful for the days of need because we have been so humbled and blessed as we watched God provide. Just as the Israelites had manna fall from the sky, God’s provision for us came in the most unexpected ways – the blessing of an anonymous check in the mail (more than once), the cards and emails of encouragement and support, the balance in the checkbook that never made sense, the meals and groceries, the prayers of friends and strangers alike. This is not the first time God has provided in amazing ways and I’m guessing it won’t be the last. Travis and I hugged and praised God and cried in humility so many times in the past few months. I would be lying if I said I haven’t been amused by God’s creative provision. There is no better place to be than in complete reliance on God. Even now, as I have only had 32 hours of work in the past three weeks, I am not worried about paying bills or buying Christmas presents and groceries. God has proven Himself trustworthy and this is just a continuation of our trust. No He certainly doesn’t give us our wants but our needs are always met. It is a privilege to sit here and say I have experienced the greatest gift of all – reliance on Christ’s provision and the joy that comes when we give Him the glory in the midst of trying times. I wouldn’t trade these days for anything. Oh sure, I pray often that God will allow us to be on the giving side more often but I also truly believe that to be a good giver, you must first learn to be a very thankful and humbled receiver. Good days are ahead for sure, but no matter what my tomorrow’s look like, I know the love of my Savior. I know His sacrifice and eternal gift for each of us. I know His gentle hand on my life. And that is truly all I need.

I started this post on November 15th and put it away in the drafts folder but thought I would drag it out today…

This is our third day home from a quick 28 hour hospitalization.  But while the hospitalization may have been quick, the emotions that have followed have been difficult, fragile, unexpressed.  After we made the decision to put him on palliative care in January, Ryan started having new symptoms – weakness, balance problems, new seizures – and we felt it was necessary to look into it all and see if there was anything we could do to increase his quality of life.  We have been asked by a few people why we would put him through another hospitalization for monitoring and consider new meds if we put him on palliative care.  And let me just say this please……it is very easy to look into someone else’s life and judge their decisions.  But until you have walked in our shoes, you don’t understand the conflicting emotions that go with trying to accept that no one has an answer.  It’s not easy to watch our son have hundreds of seizures a day and know there is no fix for him.  Oh sure we can put him through another surgery, we can try different combinations of drugs until the day he dies, we can travel the country finding new specialists.  But none of that will stop his seizures.  None of that will stop the progression of whatever undiagnosed disease he has.  It’s a very emotional place to be.  And neither Travis nor I really wanted to take this stop on our journey.  We didn’t want to deal with looking into the specialists eyes and for the first time see that he, too, has lost hope.  We didn’t want to have to say “OK, now we are really done.  We know for sure.”  Ryan has so much spunk, he still likes to be goofy and laugh and tickle.  He still slams drawers and doors over and over again. He gets into things.  He still loves to throw decorations and toys and socks and anything else he can lift as far as his arms will let him.  So to feel like there is nothing else is hard to swallow.  But I will tell you this one thing.  God is faithful. 
___

And now nearly a month later, things are looking up. But that is the ebb and flow of chronic illness. There are days that are good and days that are bad. Moments of tears and moments of laughter. Periods of hope and periods of fear. I can’t put into words the emotions that go with a hospitalization, talking about the future, the inability to “fix” my child. But as always, as Phillipians 4:7 says, “the peace of God that surpasses all understanding will guard your hearts and minds in Christ Jesus”. That peace is once again present in my heart and mind. Whenever I think about the future, my mind immediately goes to Heaven and all the glory and perfection there. We are all broken in one way or another. For some, like Ryan, it’s very obvious, and for others, it is the inner battle of the mind, the secret addiction, the horrific past that won’t stay in the past, choices we can’t undo. Whatever cross we carry here on this earth, and I always say everyone has their own cross to bear in this life, eternity takes that cross and buries it with our physical bodies. I don’t know about you but I can’t wait to get there. To be healed in all areas of my life. To be in God’s glory. To never worry or fret or deal with hardships. To feel and experience the love that put Jesus on the cross. To be free, completely free.

In the typical less-than-a-month-between-Thanksgiving-and-Christmas fashion, life has been busy. The kids are all doing well and excited for Christmas and time with family and friends. Here’s another update on us since I am not sending Christmas letters out. I think everyone who is in our circle reads this so I’m not sure what I could send out in a letter that would be new. And I post pictures here so why spend all that money for stamps? At least that’s my rationalization this year!

Lunch at Raising Cane’s after church

Brad – He’s driving! Woohoo! I can now say after a week how much I love having another driver in the house! He has done great and got some snow and ice experience this weekend with Travis in his own car so I am much more comfortable sending him off every day. His best friend is coming for a week after Christmas (from Denver) and we are all so excited to have him here. I’m already thinking of the food I will need to stockpile with all the extra friends who will be around. But I’m OK with that; I’d rather have them here anyway. I’m thinking Gator Bowl party for church friends, maybe a New Years Party for school friends….I can’t wait!

Learning to make peanut brittle

Sidney – She is doing well and doesn’t have anything new or exciting in her life these days which is just fine. As she says, there is enough drama at school that she doesn’t need anything else. She does a great job trying to stay out of the drama but at this age it’s just about inevitable. We did have a weird thing yesterday when she came home from school with something in her eye that she couldn’t get out. It was painful and causing her eye to water excessively. We ended up at the eye doctor and after some dye and numbing meds, she had a “foreign body” scraped off her eye. It was just one of those weird things. Her best friend was with us and took this picture of Sidney’s eye. You can see the white dot at 2 o’clock on her iris.

Trevor – Nothing is new with Trevor these days which is the norm for him. He’s doing very well and is a huge help around the house when he isn’t with his friends. He’s matured so much these past few months and I am really enjoying him. He’s a deep thinker and we have the most interesting conversations.

Ryan – He is as cute as a pig’s ear as Travis tells him. He is starting, or I should say, trying pool therapy tomorrow. I’m not so sure how this is going to go but if he does well, we will switch from typical PT to the pool. In OT yesterday we got him into some plastic eyeglass frames for five minutes which for him is a huge success; we have these at home now to try to get him used to the frames – no success yet. The goal is to get him to leave the frames on so we can try some prism therapy since he has so many vision problems. The issue is that he can’t talk to us so we have no idea what he sees, how he experiences the world around him through sight, balance and perception. We distracted him during OT yesterday with pushing a big punching bag type thing so we could get the glasses on him. Isn’t he cute?! Can you say Harry Potter?

Travis and I are doing just fine – we are happy and blessed. This year we will head to Iowa the weekend before Christmas to also celebrate my step mom’s 75th birthday with a big family party. I can’t believe Donna will be 75! She doesn’t look or act her age. At Thanksgiving she was standing in my sister’s kitchen peeling potatoes and Sidney said “Grandma! You’re wearing Miss Me jeans!” She had no idea Miss Me jeans are very stylish (even though she is always so tailored and stylish) and Sidney has wanted some for a long time but at $100 a pair, that isn’t happening. So to celebrate this YOUNG grandma will be fun. We always have a wonderful Christmas on the farm anyway.

I start a new job for the state on Monday and am very excited about it. I will be working for HHS as a program specialist in the Medicaid and Long Term Care department. I’m certain there will be a big learning curve coming but I am up for the challenge and excited to be on the administrative side of nursing. It will be a big adjustment working Monday thru Friday when I am used to having a few days off during the week. I can’t say I will miss the night shift and working weekends and holidays! Most of all I will really miss the days with Travis when all the kids are in school. We’ve been very spoiled for years with our schedules because we’ve always had time alone during the weekdays. I guess the date nights will have to come back again!

Please remember Jesus and the gift His birth is this season. Without Him we would not have the hope of eternity and the joy of our salvation. What a blessing and honor it is to serve the One who was gave His life for us. Blessings to each of you!

Last night we went to Red Robin to celebrate Brad’s 16th birthday which is today. The kids have youth group tonight so we went yesterday instead. I love watching how proud Sidney and Trevor are of their big brother – and excited because he can drive them around!

The kids gave Brad an early present so he could arrange his car before driving this morning. They got him stuff for his car – ice scraper, shovel, hand sanitizer, gum, deodorant, pen and paper, chap stick, air freshener, gloves, a first aid kit. He loved it; I had to laugh watching Sidney help him arrange everything in his car and telling him why things should go in certain places. Leave it to a girl to arrange a boy’s life!

The day is here when my big baby has turned 16. I’m so proud of him and love the young man he has become. He’s a great kid and has a heart of gold. I love his laid back, fun loving personality and great sense of humor.

And the traditional birthday donut….

Love that big smile as he drove off! Happy birthday, Brad!

I’ve been feeling crafty and made this wreath recently. I have another I made that hangs on the coat closet door. Sidney and I had fun working on these together and I look forward to more crafts with her; it’s the time together doing something we both enjoy that I really love. I also have a stack of old quilts my mom made years ago that need to be finished; every couple of years I pull them out but have not been ready to take on the task of finishing them. I’m sure part of it is the emotions and memories that surface when I hold the quilts in my hands. There is one in particular she made that will fit Sidney’s bed and I need to get some batting and the material for the back so I can finish it. I vividly remember sitting in my mom’s sewing room in Sioux Falls after she was diagnosed with multiple sclerosis and she started to lose her independence and ability to sew. We were talking about all her quilts and how much she loved this hobby she was very skilled at. I had always hoped my mom and I would get to spend hours in her quilting room as I got older. I dreamed of projects together, learning from her years of experience, grabbing pieces of her wisdom not only about quilts but life in general, chatting about raising kids, spilling my heart about concerns, exciting moments, sharing our hearts. Being together. And those hopes and dreams never became a reality because that awful disease stole them from us. I still miss her and all the moments she is missing. But I also understand that eternity is far greater than what my simple mind can hold, and I know the day will eventually come when we will be together again. She was making a quilt for my bed but was never able to finish it. I have that quilt top and my goal is to finish it by the end of winter so I can put it on my own daughter’s bed. It’s been safely tucked away in a basement closet for years now; I’m guessing she made it sometime between 1992 when I was in college and 1995 when she was diagnosed with MS. The years have become a blur but the memories with my mom sitting in her quilt room, teaching me to quilt and helping me make one of my own – my first – that I gave to Travis the Christmas we were engaged, talking her ear off and laughing together as she sewed and crafted. Those are years my heart holds on to so tightly. I may not have my mom at my side anymore, but the memories live on. She was a beautiful woman, and I get to carry on so much of her joy. She had a lot of it in spite of the fact she had to live the last three plus years of her life in a nursing home because MS robbed her of her ability to walk and take care of herself and caused some dementia. This quilt I plan to finish soon will keep my own daughter warm and cozy as she snuggles in her bed, but more importantly to me, it also carries memories and a legacy of love. My sweet mom spent hours upon hours making this quilt; it is a reminder of a mother’s love being carried on from one generation to another.

Christmas is in the air at our house as in most others as well. The tree is brightly lit, the ornaments hung, the decorations moved around and finally settled in their place, family plans are being finalized. Thanksgiving has come and gone; it was a great weekend with lots of family. And for us, Travis is on antibiotics for bronchitis and is having a hard time getting over it; Ryan has been sick for the past couple of days with low grade fevers that come and go. He has been sleeping a ridiculous amount of time and has not been very interactive but this is all normal when he is not feeling well. And now Sidney is coughing a lot, feels short of breath and has a low grade fever. I’m sure she needs a trip to the pediatrician so I may have to take her and Ryan this afternoon. Trevor is doing well, hopefully will stay well and has nothing new going on. And Brad is very excited for his birthday on Wednesday. He turns 16 and is excited for his new freedom. We bought him a car yesterday and I am very much looking forward to him being able to drive. I always thought I would dread this day and while it is a little nerve wracking thinking of my child being out on the road, I have to place him in God’s hands and remember that is where he belongs. I think back to one of my tried and true favorite verses ~

It’s also very exciting to realize my days of driving him to and from school, friends and church are over. I’m thrilled to have another driver in the house am certain he will be doing some chauffeuring for Travis and me.

One more thing. Travis, Ryan and I headed back to Omaha this past week and spent some time talking with Dr M, Ryan’s epileptologist. There is a national epilepsy conference at the end of this week he is attending, and he did say they are rolling out a new drug that works differently than most other drugs and maybe we should try it. It’s kind of like trying to find the needle in the haystack with Ryan but if this drug has any hope of working, giving Ryan even a couple months of relief from some of this seizure monster’s power than attacks constantly with little reprieve, then it’s worth a try. It’s certainly not going to cure him or give him any long term benefits, but even a few months of suppressing some of the seizures is worthwhile. So we wait for the doctor to come back and let us know what he finds about this drug. Every day is a gift for all of us. Just because Ryan has a diagnosis, no cure and continuing slow progression of his unknown disease doesn’t mean his days are any more numbered than the rest of us. We all should be counting our blessings, holding loved ones close, taking time to laugh, sharing joy and appreciating the little things every single day. Life is for the living and every one of us has something to give others. Every breath counts. Every moment a gift. I don’t want to ever look back and say “if only I had ____”. God promises us this moment and for that I am thankful. For eternity I am grateful. Today is a blessing and no matter what comes, I know my Savior is faithful and His plans are so very good.

We pray you are all safe and blessed. Much love!

I love to sing. Standing in the shower. When I’m putting makeup on in the bathroom. While driving down the road. Cooking in the kitchen. Everyone who lives with me is used to me singing my heart out. It’s what I do. Singing is my favorite way to pray. I have a list of songs I pray/sing depending on my mood, on what is going on that particular day. It’s my expression of my faith. This song by Kari Jobe (http://www.youtube.com/watch?v=mq59iE3MhXM) is one I’ve been listening to a lot lately. My favorite part is the chorus which I find myself singing over and over.

Be still, my soul, the Lord is on thy side
Bear patiently the cross of grief or pain
Leave to thy God to order and provide
In every change He faithful will remain
Be still, my soul, thy best, thy heavenly friend
Through thorny ways leads to a joyful end
Be still, my soul, thy God doth undertake
To guide the future as He has the past
Thy hope, thy confidence, let nothing shake
All now mysterious shall be bright at last
Be still, my soul, the waves and winds still know
His voice Who ruled them while He dwelt below

In you I rest, in You I found my hope
In you I trust, You never let me go
I place my life within your hands alone
Be still, my soul

Be still, my soul, the hour is hastening on
When we shall be forever with the Lord
When disappointed grief and fear are gone
Sorrow forgot, love’s purest joys restored
Be still, my soul, when change and tears are past
All safe and blessed we shall meet at last

Be still. What does that mean exactly, to be still? The Hebrew word for “be still” is Raphah which means to sink, relax, sink down, let drop, abate, withdraw, be idle, refrain, forsake, to be quiet, to show oneself slack. Psalm 46:10 says “Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth.” It’s a verb, a command. It’s not a request or a do-it-if-you-feel-like-it kind of a thing. God always has his reasons when He tells us to do something. And it’s always for our good.

Mark 4:35-40 says, “On that day, when evening came, He said to them, ‘Let us go over to the other side.’ Leaving the crowd, they took Him along with them in the boat, just as He was; and other boats were with Him. And there arose a fierce gale of wind, and the waves were breaking over the boat so much that the boat was already filling up. Jesus Himself was in the stern, asleep on the cushion; and they woke Him and said to Him, ‘Teacher, do You not care that we are perishing?’ And He got up and rebuked the wind and said to the sea, ‘Hush, be still.’ And the wind died down and it became perfectly calm.”

I find it so interesting that the Lord doesn’t ask us to be still, he commands it. He commanded the winds to hush and the calm came. And in the same way, when I am anxious, afraid, nervous, emotional, He tells me to be still. Easier said than done, isn’t it? Oh how I need to show myself slack, withdraw, be quiet and relax in those times of uncertainty. The God of the universe who is so very capable of calming the winds and waves on a stormy day is also the one who desires to calm our hearts and minds. But we so easily get in the way of Him working out the kinks and jumbled mess we often find ourselves in. Be still. For me that means shutting down. Taking the time to get in a dark, quiet place. Closing off the thoughts that run rampant in my mind. Shedding cleansing tears to rid myself of all the pent up emotion. It’s hard to do, but oh so needed. Singing. I am still when I am singing. This song is one of my tried and true prayers. In you I rest. In you I find my hope. In you I trust. You never let me go. I place my life within your hands alone. Be still my soul. I’ll be honest. This past week has been tough. So much going on. Too many things to think about. Hurdles and barriers and not being able to open doors but instead finding myself stuck in the hallway. Life is like that. We think we have things figured out only to look away and everything has changed. And I find in these times of uncertainty, in these times of change, in these times of feeling out of control, God is calling me to be still. There is always a heart issue. Always something I need to lay at His feet. I’m a work in progress. Always have been. Always will be. We are all a work in progress. But I find I am honestly the most content when I am still. When things are going well, when I finally feel I am back on my feet, when everything lines up and goes as planned, I don’t have the need for God that I experience when He calls me to be still. It’s in those times of quietness, refraining from moving in any direction, withdrawal from action, that I experience a closeness with my Father I can’t put into words. Just today I found myself walking to the mailbox thanking God for a certain difficulty I am not enjoying. But it’s the closeness I feel during theses times of uncertainty that draws me to the One who holds my tomorrows and brightens my path today. I’m good at doing things my way. I excel at making decisions, carrying out plans, telling the world how things are going to be done. But it’s during those times of complete independence I find I am the weakest. I am the most insecure. I am utterly tired. Because my strength may feel powerful, but that false front of security is what lays me at His feet begging for mercy, asking for direction, praying for grace. I would rather be still in my Heavenly Father’s presence every day of my life, not knowing how to do the next step than to be independent and full of self. Because my way is messy. Today I found myself randomly driving through a neighborhood crying on the phone to my dad about this and that and the other. Things that are all causing me stress. Things out of my control. Things only the Lord can work out. And as much as it hurts, and as I told my dad “I just want one thing to be easy for once, I just want one thing to go right”, I know this time of being still is what is keeping the hand of God on my life. Because when I am still, when I am not in control, He is the one able to do His best work in me. My life is not about me and all my plans. It’s about God using me for His glory. I simply forget. So when I, like the disciples, get all worked up over the storm around me, all I have to do is call on the name of Jesus so he can calm not only the storm but also my anxious heart.

Be still. It can also very much be a time to find thankfulness. To touch grace. To breathe in mercy. To give love. Being still, whether in good moments or bad, means I get to choose to focus on all the good. Oh there is lots of good. Family. Friends. Health. Sun peeking through the windows. Food warming in the oven. Clean fresh sheets to cuddle into. Heated seats while out on cold, windy days. McDonald’s Diet Coke when I need a pick me up. Lots of fingernail polish choices when I want to be girly. Hangers upon hangers of clothes to choose from. Community with church friends. Freedom to come and go as I choose. Education. Laughter. Love from my man. Games stacked high on the shelf for family time. Forgiveness. Oh the blessings. There are plenty. An overabundance. Sometimes we need the stillness to remember the blessing.

Tomorrow we see the epileptologist in Omaha. I’m not even sure why we are going because when Ryan was released from the hospital two weeks ago, he said he would see us in three months. But the other day Travis talked to the nurse and was told he wants to see us this week. So off we will go. This is definitely a be still moment. My mind wants to play all kinds of tricks and games trying to figure out why we are heading back to the clinic so soon. And maybe it’s something very simple. I have no idea. I already have so many emotions jumbled up in my heart because of Ryan and all the hurt that goes with having a child with a chronic life altering condition. We aren’t trying any new meds (we’ve been on almost all of them), we aren’t doing an MRI (too dangerous with his vagus nerve stimulator), we aren’t doing surgery, we won’t do clinical trials. I can’t come up with anything. But the God who calms the storm is already there waiting to still this girl.

You just might hear me singing tomorrow – in you I rest, in you I find my hope…..

This is how I felt too when we left the hospital today. Tired. Frazzled. Weary. Teary-eyed. Sad. On a positive note, we were able to records loads of seizures in a very short period of time which is why we are already home. But we knew that would happen. Ryan is world famous for having lots of seizures. All the time. Every day. Never catches a break. So monitoring seizures is quick and easy with him. Travis drove up this morning after the kids left for school and arrived just as the doctor was in the room to talk about findings. He confirmed what we didn’t expect – that the nystagmus (eyes jolting back and forth very quickly) is not seizure activity. I was shocked by that one. The doctor thinks the eye movements might be behavioral changes in his brain. I’m not convinced of that idea. Ryan does have a lot of seizure activity in his left frontal lobe that is not controlled (we knew this) and he also has seizures in his right hemisphere that are crossing what is left of his corpus callosum (the pathway that allows both sides of the brain to talk to each other) and spreading quickly throughout his brain. And as it has been since he was a baby, he has constant seizure activity that is sub-clinical meaning you can’t see any signs of the seizure activity when you look at Ryan. So basically he is still a big seizure mess which we knew. The doctor suggested we finish the corpus callosotomy surgery we did in February 2012 and cut the remaining 1/3 connection between the right and left hemispheres. We are not willing to put Ryan through another brain surgery especially when it won’t cure him and it will cause physical set backs. The doctor said he thinks Ryan’s brain can recover fairly quickly because he is only ten and his brain is still developing. But from our standpoint, it is silly to put him through another surgery that can’t fix him only to cause more physical problems to add to the already cumbersome vision and balance issues on top of the increasing weakness. My momma’s heart just can’t even take that option. So then we talked about trying more meds. He wants to put Ryan back on a medication we tried over a year ago – Sabril – but this med can cause the permanent loss of peripheral vision and when we tried it, Ryan was so drugged, off balance and sleepy he was only awake for 3-4 hours a day and even then he was like a zombie. And we couldn’t even get him up to a therapeutic dose that would actually do any good. One of Ryan’s meds has changed since that trial and the doctor thinks he might do better this time and not be so tired but I’m not convinced yet. Then we talked about putting him in physical therapy which he is already doing on a weekly basis for his weakness. We both feel like the doctor simply has no idea what to do with Ryan and is grasping at straws trying to come up with something. I’m sure it’s frustrating for him as a very specialized and highly respected physician because he is in the business of fixing people. And Ryan simply can’t be fixed. We are going to do a sedated MRI at Children’s in the next few weeks just to see if there is anything major going on we don’t know about that is causing all the balance and vision issues as well as the increasing weakness. While talking to my physical therapist sister who is very wise in her profession, she suggested maybe Ryan has a mid line shift syndrome. Go here, if interested, (http://www.developmentalvisioncenter.com/Content/visiontherapy/braininjuries.aspx) for an easy read basic idea of what she is talking about. It makes perfect sense but isn’t something we can fix. Beyond that, Travis and I have a lot of discussing to do tomorrow to decide how we want to proceed. It’s simply heart wrenching to deal with all this and I don’t know how to find the words to adequately tell you what my heart feels. Travis and I made the decision in January to put Ryan on palliative care meaning we are done trying to fix him and instead are only going to focus on his quality of life. But since that decision, the weakness, balance, and nystagmus issues have all come up. It’s so very hard to find that fine line in the sand between A: putting Ryan through procedures and medication changes that may cause a temporary decrease in seizures knowing they will once again burst back to life at full speed and B: accepting that we have done everything possible to give him the best quality of life we can. My heart simply aches tonight. Grief knows no limits. It is sneaky and lurks behind hope. It waits for the perfect moment to pop out and tag along with doubt. The two of them together make the best team. They cause you to rethink decisions, question motives, get ugly and short tempered.

Sunday I made the decision to go to the church service instead of meeting my sweet special needs friends for the Masterpiece Sunday school class. I’m certain the Lord put a gentle nudge in my heart because I needed to hear the reminder Pastor Mark gave from Psalm 91. It’s one of my all time favorite passages in the Word, and vs 4 is my favorite. It’s my go to promise when hard finds me. When grief strikes. When doubt plagues. When comfort is beyond reach.

He will cover you with his feathers. He will shelter you with his wings. His faithful promises are your armor and protection.

I can’t and don’t want to image experiencing the hard moments without my faith. Without hope. Because hope tells me there is so much more coming. Hope tells me Christ died so I might have eternal life. Hope tells me the day is coming when Ryan will be whole and healed and perfect. But that day isn’t going to make an appearance here in this life. That hope is eternal. It’s the promise I keep tucked away like a well worn and tearing creased love note. It’s what makes getting through today possible. It’s what makes Psalm 91:4 such a comfort. Because I know there is so much more. I know there is eternity to look forward to. I know these struggles are temporary. I know I am called to faithfulness. To appreciating the good and the bad and the fear and the worry and the hurt and the grief and the doubt. Because without all those ingredients thrown into the recipe of life, I would lack a reason to trust in Jesus Christ. Because life is about glorifying God in the easy and the hard. Most definitely in the hard. His grace is what gives me the drive and purpose to get through the searing pain of a broken child. His hope is what gives me the energy to wipe away falling tears. His love is what gives me the comfort to remember comfort comes in the whisper of the wind, the ray of sunshine on my face, the tousle of dying leaves. Seasons change. And this moment with Ryan’s health may trudge through the changing seasons, but my growth in the seasons
of uncertainty and pain and trying to do the right thing, the best thing, is the blessing that comes with faithfulness to the path my Father has called me to walk.

Phillippians 4:7 says this – And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. I’ve experienced Satan’s attacks many times when I allow fear to rise up and take me hostage. It’s very easy to play the “what if” game. We all do it. But like Pastor Mark reminded me on Sunday, if I’m living in fear, I’m not trusting my Heavenly Father.

Psalm 91

Whoever dwells in the shelter of the Most High will rest in the shadow of the Almighty.
I will say of the Lord, “He is my refuge and my fortress, my God, in whom I trust.”
Surely he will save you from the fowler’s snare and from the deadly pestilence.
He will cover you with his feathers, and under his wings you will find refuge;
his faithfulness will be your shield and rampart.
You will not fear the terror of night, nor the arrow that flies by day,
nor the pestilence that stalks in the darkness,
nor the plague that destroys at midday.
A thousand may fall at your side, ten thousand at your right hand, but it will not come near you.
You will only observe with your eyes and see the punishment of the wicked.
If you say, “The Lord is my refuge,” and you make the Most High your dwelling,
no harm will overtake you, no disaster will come near your tent.
For he will command his angels concerning you to guard you in all your ways;
they will lift you up in their hands, so that you will not strike your foot against a stone.
You will tread on the lion and the cobra; you will trample the great lion and the serpent.
“Because he loves me,” says the Lord, “I will rescue him; I will protect him, for he acknowledges my name.
He will call on me, and I will answer him; I will be with him in trouble,
I will deliver him and honor him. With long life I will satisfy him and show him my salvation.”

Thank you for your kind words and prayers. Travis and I can not express what it means to know God’s army is standing with us and interceding on our behalf. You all have our hearts. We love you.

Ryan, Candy and I arrived at UNMC this morning and were quickly admitted to the PICU. Once again we have a fabulous group taking care of him. Some little cutie decided to be a stinker and fight all the sedation. After getting his IV, he was given 50mg Benadryl and 2mg Ativan all IV. Now for an adult that should be enough to knock you out. Oh but not for our Ryan. This kid has been addicted to Benzos for years because of all his necessary daily and rescue drugs. We tried another 1mg of Ativan, and after the doctor stopped in and Ryan was still awake, he got another 2mg. This is a phenomenal amount of drugs! Most of us would be on a ventilator in respiratory failure with all that in our systems. But not Ryan. He was definitely drugged but could still open his eyes, squirm and shout out an occasional “nnnooooo!” Unreal. Of course once we got all the electrodes on and covered his head, he went right to sleep. He has to do things his way which is fine. Good thing he is so cute! He had so many seizures before he was hooked up; hopefully tomorrow will be just as productive. He should be here for two days so probably home on Wednesday. Thanks for your prayers. This is pretty old hat to us but it’s still no fun being stuck in the hospital and Ryan can’t get out of bed the whole time. Will keep you updated! Here are a few pictures of our day.

Today was the perfect day to snap a few pictures of the kids at Pioneers Park.

Monday morning Ryan will be admitted to UNMC’s pediatric ICU for another video EEG monitoring adventure. I’m hoping we will only be there for two or three nights and am curious, but nervous, to find out how bad his seizures really are. We already know they are in both hemispheres and have now moved all the way back to his occipital lobe. As always I promise to keep you updated and post some pictures. Even though we’ve done this more times than I can count, it is always difficult to put him back in the hospital and the older kids never escape the fear and worry. We appreciate your prayers.

I love the falling leaves, the cooler, soggy weather, the changing colors outside my door. And I’m really enjoying my comfy pajama pants with my mismatched old t-shirts and tried and true sweatshirts. Fall is just a cozy time of year. I love the smell of a good fire paired with the sound of crunching leaves. And then there is hot soup, homemade bread, pumpkin and cinnamon and everything fall.

And speaking of changing seasons, Brad turns 16 in thirty something days. He can tell you exactly since he is counting down. We are in the season of saying goodbye to another great year of high school football, making sure he is ready to drive, trying to find a reasonably priced reliable car, being astounded at our rising insurance costs, getting excited he won’t need rides soon, talking about where he is going to apply for jobs. So much change but it’s a fun season watching him mature and expand his independence.

And sweet Sidney is a blast. She is the one who asked me to take her to Target so she could spend some birthday money then informed me as we were checking out it was time for a sit down. We grabbed our Dt Cokes and sat over warm salty popcorn and a big buttery pretzel and talked. She asked me how I’m doing, we talked about school, friends, drama, real life hurts and hangups and disappointments. She has such a heart for others and doesn’t miss a spoken word, a gentle touch, a look that speaks of a hurting heart, an opportunity to whisper God’s truth into someone’s life. She is growing up so fast and has a maturity beyond her years.

Trevor brings a smile to my face and laughter to my heart. He is the one who made steamed broccoli for his bed time snack while discussing the ins and outs of football and the differences between Hinduism and Christianity. Boy when you get that kid talking does he spew all kinds of knowledge. He doesn’t forget anything. I love watching him talk about his Halloween plans with friends and see the childish excitement on his face. Trevor loves a good backyard tackle football game with his buddies and gets excited about blueberry muffins and eating around the table together.

Little Ryan is in the midst of all kinds of change. He is newly ten but is so big and solid. His new braces are in and just this morning we had him fit for a new wheelchair. That was hard. Neither of us wanted to admit he needs more than an umbrella stroller on steroids but we chose a burnt orange one that will suit his future needs. And because of the increase in his occipital lobe seizures and how they are affecting his day to day life, we are hospitalizing him again for another video EEG run. He will be admitted at UNMC on Monday, November 11th. Hopefully we won’t be stuck in the PICU for more than two or three nights but this needs to be done. As Travis says, Ryan has so much spunk and desire to interact and engage with everyone that we owe it to him to give him the best quality of life he can have. And if that means we try med changes – again – then that’s what we will do. These times of change are always so hard on the heart. But it’s a season. Ryan’s giggles fill the room, his ornery antics keep us on our toes and his sweet smile brings sunshine to our home.

I start a new job tomorrow and while I am nervous, I’m also very excited. I am praying I will love this new adventure and will thrive in it. It’s amusing to me when God opens a door we would otherwise never have glanced at. I will share more after I’ve been there for a bit. Travis is good and keeping busy with work, kids, errands, coffee with friends. He can always find things to fill his day and never runs out of amusing stories and humor for the rest of us. Much of the laughter, joking and wrestling that goes on in these four walls starts with him.

Blessings and love to you all. I pray you feel the presence of God in your life today whatever the day brings and know He is enough. He is always enough.

Fear Factor. Some of you may not know the show but it’s one that has been on TV in the past few years. I can’t say I’ve ever watched an episode in its entirety but I’ve seen enough to know the idea. Basically people come on the show to face their fears whether it is mice or spiders or heights or whatever. People have some pretty strange fears. As you can imagine the show is laced with plenty of drama, but I would expect nothing less on prime time TV. I often wonder, when these people go home, are they still afraid of whatever they faced on the show? I bet they are. I don’t know many people who can face a fear one time then handle it with ease on the next encounter. You see, I am deathly afraid of mice. It’s really quite silly. I know they are harmless but my imagination tells me otherwise. I know God made mice for a reason. I know they have a purpose (besides being eaten by cats I’m not sure what that purpose is). I know these things. But I’m still ridiculously afraid of them. And I’m certain holding a mouse on TV one time would not cure me of my silly but very real fear. I’ve told some of you before about the time Trevor casually said “mom, did you see that squirrel over there?” referring to a mouse that made its way into our home through the garage as we were unloading the van after a weekend away. He was about three years old and the story ends with me restlessly standing on a chair screaming at the top of my lungs, yelling at the three oldest kids (who were in the range of 3 to 6 years old at the time) to “hurry! get on my bed! run!” which caused all three of them to shed a lot of tears. They didn’t know I was freaking out over a hungry little mouse who was just trying to find something to eat. And then Travis came running upstairs to my rescue and said “what is going on up here?”. You can imagine his displeasure when he realized I was causing much unneeded fear for our kids over a simple mouse.

But life is like that. A squirrel comes into our lives and makes us restless. We imagine all kinds of scenarios that just might possibly play out. We wrestle our thoughts, we plan every scenario possible. We work ourselves up. Oh I get it. Sometimes those fears actually do come to fruition and life gets hard. Real hard. But other times we are our own worst enemy. Because we allow the real enemy just enough room to sneak in. To steal our joy. To recklessly take over and fill our thoughts with those four simple letters – F.E.A.R. Yet God’s Word is full to the brim with promises of peace. With love. With His covering over us. Yet I find it is often much easier to get caught up in the fear and the lies than to open my Bible and search out those tried and true scriptures which have proven themselves true in my past. Those same promises that have proven my God to be real. The Bible shows me my Savior who relishes in the moments when I release those fears to Him and rest in His promises.

You would think I’ve learned over the years how to combat this. That I’d have become a master expert at fighting fear. But the truth of the matter is yes, I may know all the verses to recite, but each moment of fear presents itself with different circumstances. And let’s face it. Fear is real. And it’s hard. Really hard to face. Because fear means I’m not trusting my Jesus. Fear means I’m allowing the circumstances of my life, most of which are temporary, to rule me. Fear means my imagination is going wild. Fear means I have a lot of work to do because my level of trust is down and my need to control is in high gear. I’m a work in progress. Aren’t we all! But the one foundation that will never change, the truth that stands the test of time, the knowledge that intersects the emotion of fear is this. God never changes. He doesn’t waver with the tides of the sea. He doesn’t falter with the force of the winds. He is the same yesterday, today and forever. And with His steady hand on my back telling me peace is present when all I can see is the fear, the unknown, His gentle presence and the truth of His promises is what grounds me. What envelopes me with peace. His presence is my compass. His truth is my guide. His love is my energy. There is nothing this world can throw at me that I can not get through with my Shepherd. He is the one who leaves the 99 to find the one missing sheep. Oh imagine His comforting hands when He finally finds the one. God is passionate about His people. I can hardly take it in. What a concept that I mean enough to my Shepherd for Him to leave the rest to find me. He rejoices in our weakness. He rejoices when we get up, give up and leave all that fear at His feet. Because He calls us to trust, not control. He calls us to follow, not lead. He calls us to overcome, not give in.

It’s hard. Really hard. This trusting thing is not fun. I’ve spent plenty a night playing the drama acts while cozy in my bed. I lie in darkness and live out every scenario in my mind. It’s amusing the imagination we have when we think of all the ways our situation can go wrong. And then the fear comes to life. It overtakes us, it winds its way through our minds and hearts and souls like pesky weeds in a garden. If we don’t tend our garden, all the work, the fruits of our labor will die because of those weeds. The same can be said for our souls. Fear zaps us of energy. It fades our strength. It diminishes our faith. It robs our joy. It steals our witness. Trusting God in the midst of unknown circumstances takes work. And a lot of it. It’s like training for a marathon. We must train our minds to focus on the eternal promises of God instead of focusing on the daily events that may occur. I have found, especially in the past couple of months, the only way to combat fear when I am down in the dumps, feeling sorry for myself, letting my imagination go wild, forgetting the promises of God, allowing hurt to overtake me is to say the name of Jesus. There is nothing more powerful than the name of Jesus. And it works. When I catch myself in the self made pit of fear and despair, all I have to do is say the name of Jesus. Over and over and over again. Jesus. Jesus. Jesus. Jesus. His name is power and peace and comfort and truth. His name is the slap in the face I need to jolt me out of my despair. Because it works. Because God works. My situation may not be over, my hurt may still be present, my fear may once again take root at some point, but in that moment, God shows up and I know I am safe. I know He loves me. I know He is Jehovah Shammah – the Lord is there. And He is. He is there in my future. He is there up the road preparing the way for me. He is there bringing the answers that I can’t see today. He is there waiting to comfort me in the days and weeks and months to come. He is there waiting for me to praise Him in whatever I will face in the moments that I have not come to yet. He is there bringing others onto my path He intends for me to encounter. He is intentional like that. Because we are not on this journey for ourselves. We are all on this journey to show others who He is. These verses are some of my favorite. They are my tried and true recipes of life. I love to fill God’s Word with my own name, with my own circumstances. It makes it personal. It makes His Word come to life. Because His Word is for each of us.

Be strong and courageous. Do not be afraid or terrified of ________, for the Lord your God goes with you; he will never leave you nor forsake you. (Deuteronomy 31:6)

The Lord is my helper; I will not be afraid. What can Man do to me? (Hebrews 13:6)

The Lord is my light and my salvation–whom shall I fear? The Lord is the stronghold of my life–of whom shall I be afraid? (Psalm 27:1)

But the angel said to you, Do not be afraid, Kim, you have found favor with God. (Luke 1:30)

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your heart be troubled and do not be afraid. (John 14:27)

For I am the Lord your God who takes hold of your right hands and says to you, do not fear, Kim, I will help you. (Isaiah 41:13)

Let’s pray for each other. Many of us are hurting. Facing difficulties that weigh us down. Situations that seem impossible. Facing fears of what may happen. Literally fighting for our lives. Dealing with difficult people. The list goes on and on. But one thing I know to be true no matter what the details of our lives look like, no matter what circumstances today brings. God is good. He is always good. His ways are so much better than ours. He doesn’t need our help. He needs our trust. He is gracious when we make mistakes. He is loving when anger finds us. He is forgiving when we fail. His arms are strong enough when grief overtakes us. Call on his name with me and experience Him for yourself. Jesus. Jesus. Jesus.

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

Last week I got to spend at least an hour sitting on my neighbor and friend’s couch talking about life. She is a beautiful soul full of wisdom and several years ahead of me on the marriage and child raising journey. The older I get and the longer we share our street, the more I appreciate my Sheila. Our time together is sparse aside from a wave and smile and the occasional chat under one of our big shade trees. But time with my friend, talking of years gone by, made me think. If I could be a time traveler and go back in time to visit the younger but still adult Kim, sit over a Diet Coke and chips and salsa with me and give her some advice and encouragement, I’d probably say something like this.

21 year old Kim: You are about to marry the love of your life. That high school friend you loved dearly but never looked at as a possible dating partner, much less someone you will fall head over heals in love with and marry. Right now all your thoughts are lofty dreams and fairytale plans of how wonderful life will be. And it will be wonderful. But not in the wonderful way you think. But don’t let me burst your bubble. Everyone needs to dream. Right now just focus on the commitment before you, on the amazing changes being married will bring to your life. Enjoy the next few years before the babies come. Work hard to build trust with Travis, encourage him in his role as the head of your home. Play together. Never stop laughing and tickling and being silly. Those are truly the things that will see you through the searing pain that will come but don’t think about that just yet. Focus on Jesus. Build your faith. Memorize scripture and lots of it. You will need it and rely on it in times to come when you simply have no words to pray, when hope seems distant and you need the comforting promises of God’s word to envelope you in a big, loving embrace. So rest in this new life. Savor every moment.

26 year old Kim: Oh how life has changed in the past five years! See? I told you those 3 1/2 years before babies came would be vital. Look how they cemented your communication, your love, your commitment to each other. There is a reason God gave you those years with just the two of you and I promise, you will look back on those moments many times in the future and give thanks for that solid, God given foundation. You will need it. But right now, your heart hurts. For loss of your parents marriage, for loss of your mom’s health. It’s hard. I know and I’m so sorry. But as your are learning now, God is still good even in the midst of pain. Even in the ugly of frequent tears, unbridled anger, casting blame and trying to navigate this new world of disappointment and loss. Your heavenly Father is never going to leave you or forsake you. Keep holding on to those promises. You need them. Those babies keep growing in the midst of the life your mom is losing. But the joy of those precious innocent faces will continue to bring brightness to her life, smiles and giggles to her heart. These years are so beautiful and blessed but so dark and painful all at the same time. But God sees. And that sweet husband of yours, he is an angel. Oh trust me. He loves you unselfishly, and when you hurt, he hurts even more for you. You will get through this. Your mom is going to die and you will be there to see her last breath and feel the beauty of her running into the arms of Jesus. And those babies you have the privilege of raising? They need you. Enjoy every moment because someday, when you get to the place I came from today, so many of those moments will be forgotten. But the mark you are leaving on their lives, the imprint you are placing on their hearts and in their souls? Those will last forever. Some days are so hard and you will fall into a heap crying when Travis comes home because it’s been a hard day and you got absolutely nothing done except change what seemed like five hundred diapers, pulled a kid off the table and the dresser and the top of the couch over and over, did unending laundry loads but still didn’t make a dent, tried to negotiate with a toddler who refused to eat everything you set in front of him then wouldn’t take a nap when you needed some peace and quiet to rejuvenate your soul. And you were still in your pajamas with your hair sticking out in eighty directions when Travis walked in the door after work. Don’t forget to thank him for all the hard work he does outside the house to provide for everything you get to experience inside the home. Being a police officer is hard. Praise him. Don’t ever stop praising him. He needs to be respected and loved and doted on too. So tuck some of your energy away for him; don’t be completely drained and spent by the time he gets home. You both need it.

31 year old Kim: This age is the hardest for me to meet face to face. Don’t feel bad. I’m so glad to see you. But it’s hard because I have a perspective you don’t have yet. You love being a stay at home mom to your four babies. You know what a privilege it is to be home with them. But your heart has started to fill with pride. Trust me on this one. I wish I could stop it before it happened but I can’t. So instead I’m going to tell you this because you know we are blunt so why not be blunt now? You think you are all that. But you don’t see it. In your mind you do it all “right”. You stay home with your kids, you go to women’s Bible study every week, you started a weekly play group, you keep your kids on a schedule, you discipline them to teach them character and right and wrong. But in all that, no matter how good of a mom you are as you do everything so right in your mind, you’ve allowed Satan to fill you with pride. And boy is that dangerous. Because you are going to hurt people with your condescending spirit even though you don’t mean to. You are going to be hurt by the words of others because of how you arrogantly present yourself. Oh this makes me so sad, Kim. Because I know your heart. You truly want good for everyone. You are not mean spirited and would give the shirt off your back to anyone. You are selfless and giving. But even in all that goodness in you, you still have a sin nature. Learn now how to let the Holy Spirit lead you. Ask for forgiveness. You will and in that you will learn a very important, needed gift of the Spirit – humility. Thank God for His faithfulness in your life and rest now while you can. Because these next few years are painful. They will change you in ways you never imagined. Those lofty dreams and fairy tale plans? Let them go and enjoy the life God is giving you today. Learn to live in the now and stop thinking about what is to come. It’s a hard skill to grasp but you will need it desperately. And those sisters of yours? You love each other so much. They are your best friends and that will never change. Keep investing in them. Keep them as a daily part of your life. When the rubber hits the road, they are the ones who will never forsake you. That Lucht bond is tight. You’ve endured a lot together already and there will be more to come. Bless those sisters and be blessed by them too. They are God’s gift to you. Relish those beautiful women.

35 year old Kim: I am already in tears because my heart so hurts for you and Travis right now. I wish I could get you to see the big picture. To see the next couple of years that are coming and how God is going to use your hurt, your pain and loneliness and complete emptiness for Him. He is changing you and even though you still can’t see the results of this period, you have learned God is always good. He always provides and you will never go without – emotionally, mentally, physically, financially, spiritually. He is going to place angels on your path who will love you and care for you. After the shooting and the months to come when God calls Travis to leave the police department, you will find God with a depth you have never experienced before. You’ve already endured numerous hospitalizations, diagnosis, unanswered questions, disappointment and loss and grief with Ryan. Oh those early years are so very hard with sweet Ryan. Your life will never be the same because these circumstances and life events will be a part of you forever just like losing your mom was. But don’t just focus on the pain, on the negative, on all that went wrong and didn’t fit into your life plan. Enjoy God’s blessings. Because they have come and will continue to come. God will use people you don’t know to bless you in many ways. Thank Him for each one and don’t ever take His gifts for granted. You have people praying for you, stopping by with food and hugs and prayers. Your mailbox gives you the gift of words and Bible verses and encouragement when you are weary. I still don’t know what God is going to do with the events of your life but He is using you exactly how He wants. Just be a willing vessel. Keep a servant’s heart. Read the Word but do more than that. Really soak it in. Live it. Pray with your kids. Don’t stop teaching them it’s OK to mess up and ask for forgiveness. They understand pain in ways they shouldn’t at their young ages. Remember God is intentional in His plans. And He has amazing plans for them as well. Their love for Jesus will keep growing and you will be humbled by their faith. By now you know in the depths of your heart there isn’t anything this world can throw at you that you can’t walk through because you have unwavering faith and know the goodness of God. Your husband is still amazing. Oh yes, you drive each other crazy at times but that commitment and love and friendship is priceless. Embrace it. God is so good. Keep laughing, keep dreaming, keep trusting the big picture. Life is full of ups and downs.

And today: I still don’t understand God’s plan. And maybe that’s how He keeps me fully trusting Him. Because He knows if He gave me even just a tiny little piece of control over the circumstances of my life, I’d run with it. Have a heyday. But I’d make a mess. An ugly mess. Because I have no idea how God wants to use me. Or why. Or when. I’m learning to enjoy the beauty of today in spite of loss, disappointment, goodbyes, tough blows and unexpected change. But that’s life. We all have those times. Joy and contentment come when we learn to focus on all the good, on all the blessing, on all the love. Because there is so much of it all. I don’t ever want to stop laughing, stop living, stop dancing and exploring and cherishing every minute. God has handed me four beautiful souls whom I get to invest in every day, a husband whom I love beyond words, family who are so simply amazing and I can’t find the words to express my love for each of them, amazing friends and opportunities to grow. I am excited to see what God has in store for my future. Oh I know there will be lots of hurt, plenty of pain. That’s to be expected but it doesn’t and can’t define me. Because life here is about glorifying God. About leading others to Him. About being His light in this dark world. And I’m just here to do my part, whatever that looks like. It’s all about perspective and learning to be grateful no matter what life throws my way. At the end of the day, I relish what my heart knows so well…that I’m not home yet. Just as Building 429 sings so well ~

“Where I Belong”

Sometimes it feels like I’m watching from the outside
Sometimes it feels like I’m breathing but am I alive
I won’t keep searching for answers that aren’t here to find

All I know is I’m not home yet
This is not where I belong
Take this world and give me Jesus
This is not where I belong

So when the walls come falling down on me
And when I’m lost in the current of a raging sea
I have this blessed assurance holding me.

All I know is I’m not home yet
This is not where I belong
Take this world and give me Jesus
This is not where I belong

When the earth shakes I wanna be found in You
When the lights fade I wanna be found in You

All I know is I’m not home yet
This is not where I belong
Take this world and give me Jesus
This is not where I belong

Sunday night we had the amazing privilege of spending time with some of the greatest people to walk the face of this earth. They are men and women, who like Ryan, are broken in the world’s idea and perception of normal. They are beautiful souls. So loving, inquisitive of others, cheerful, friendly. And they love Jesus. Boy do they love Jesus well. The picture of Travis and Norm is one of the most touching for me. Norm attends our church, as all these wonderful people do. But Norm is blind. He is a widower with several grown children and he tunes pianos for a living. If you want to meet someone who knows Jesus well, talk to Norm. He is a godly man who knows the Bible. He knows God personally. He walks the walk. And he loves to tell jokes. And Scott. Oh Scott. He makes me giggle. Scott is in the red sweatshirt in the picture above with Sidney giving her a very loving hug. Sweet Scott is sweet on Sidney. He informed me numerous times throughout the night that he is going to marry Sidney. “When she turns 42 (he is 42), her and me, we are going to get married”. He loves Jesus too. When we were singing around the fire, he repeatedly asked Steve (our worship pastor) for one more song. Just one more. He can’t sing most of the words but his heart sings to Jesus. I could go on and on about each one of these beautifully broken souls. So much love, so much joy. Broken in the eyes of the world but oh so perfectly whole in the eyes of Jesus. And so perfectly loved by those who take the time to listen to their story, to love on them and spend time getting to know each of them. These people change my life. They teach me more than I could ever teach them. These souls are a blessing. So thank you to all those who came, who invest in their lives and in the life of my sweet boy. God is so very good to provide a loving, growing community in our church perfectly named Masterpiece. Because each person present Sunday for our fun fall party is a vital part of God’s masterpiece.

It’s been a very up and down kind of week. This trip we are taking right now came to a head, and Travis and I have had to face some hard conversations, really dig deep to get through some tough times. He even said to me this week, “I think this is honestly one of the hardest times we have ever gone through in our marriage”. I respect that. I’m so very thankful for a man who loves me deeply, who won’t stop fighting, who doesn’t walk away when the hard gets hard. If there is one thing we have learned to do in the last 19 plus years, it’s to never give up. We pursue each other recklessly, we fight for the bond that holds us together, we face the ugly and pathetic and mean and fearful together and in the end, we embrace and remember why we love each other so much. Life is just like that more often than most people care to admit. Marriage, and all relationships for that matter, take work. Hard work. Committed work. Patient work. But at the end of the day, because of that desire to love and be loved, to serve the one God placed beside me on this life journey, we get through the difficult and find the place of grace with each other.

The profound has shown up in my week and there are several lessons and bits of wisdom I don’t ever want to lose. Here goes, my random ramblings.

* From the Jesus Calling by Sarah Young (if you don’t have this book, go buy it or download it on your phone or reader) ~ Go gently through this day, keeping your eyes on Me. I will open up the way before you, as you take steps of trust along your path. Sometimes the way before you appears to be blocked. If you focus on the obstacle or search for a way around it, you will probably go off course. Instead, focus on me, the Shepherd who is leading you along your life-journey. Before you know it, the “obstacle” will be behind you and you will hardly know how you passed through it. I love this visual and my mind pictures being on a curvy, mountain road where one side is straight up and the other side is straight down. I see a big rock right in the middle of the road, encompassing all the asphalt with no way around it. I think we all tend to focus so much on the problem staring us down that we miss the opportunity to let God’s creativity be the power that gets us from point A, what seems immovable and impossible, to point B, the next portion of the journey. I imagine myself looking back in the days to come and taking a huge sigh of relief and saying “good grief was that hard but God was merciful and saw us through”. Because at the end of the day, it’s not the tools in my bag or the strength of my arms and legs to try to crawl around or chisel though the obstacle that will get me past it. It’s believing God is who He says He is, He can do what His word promises He can do, He loves us more than we can fathom and sent His own Son to die for us, He desires goodness for our lives. It’s trust and faith. Oh believe me, it’s hard to throw out those tools I carry so I can figure out my own destiny, so I can work my way through every obstacle I face. I’m stubborn like that. I am the one whose motto from the day I was a chunky, big bellied, obstinate as they come toddler has been “I do it myself!”. So to trust that the Almighty God can move me from point A to point B without my help is a lesson I will have to learn over and over again. Thankfully I am getting there quicker the older I get. I’m softening. Life experience and seeing God show up and do amazing things tend to do that.

* Listen is a verb. It is an action. Listening takes training and character and respect for the person talking. I haven’t always been a good listener. I readily admit there are times (far too many times) when I am selfish and full of pride and absolutely know my words are far more important than the words being spoken to me. I have had to work very hard to be a good listener. Because by nature, there are an awful lot of things I simply don’t care about. And no one can make me care. I either care or I don’t care. There is no in between. This issue is pretty black and white for me. I’m not a good faker either so if I don’t care about what someone is saying to me, I’m not very good at hiding my I don’t care face. It’s true. Sigh….And it’s hard to admit that level of pride. But remember I’m a work in progress and I’m getting better at this listening – and caring – thing. I’m softening in this area only because the Lord has gently forced me to soften and taught me to care and listen. And that investing in other’s lives and feelings and thoughts is amazing. That I am so blessed by others when I take the time to listen. But one thing that really stands out to me in this whole listening business is this. There are few people in my life who listen well. And I have come to appreciate them oh so very much. I want to be patient and sensitive and caring like they are. They have it down. They know how to zip their lip and just listen. Cause I do a lot of talking. Especially when I am struggling and need to get it all out or as I like to say, verbally vomit all my thoughts and feelings. I’m so transparent and I don’t internalize things much. Oh I try to put up a wall and pretend things are great and fabulous and care free. But those who know me well know it’s an act. My sweet husband definitely sees through this one. It’s a protective mechanism I try to wear so I don’t have to face the hurt, the ugly in myself, the disappointment from others. So this listening gig is one I am working very hard on these days. Because I really do care about people. I’m actually a very passionate person. I really desire to invest in people’s lives. And I really, really appreciate those beautiful souls who know how to listen to me so well. You know who you are. I love ya.

* Palliative care sucks. I said I am honest a long time ago. And blunt. So there you have it. Disease is hard. Especially when it doesn’t have a name but it moves and invades and is sneaky. Thursday found us in Omaha. We met with the most amazing doctor ever and his wonderful team. They are a blessing. If anyone knows how to listen, it’s these people. They are so kind and compassionate and calm. You can see it in their eyes, all over their faces. And as Travis and I poured our hearts out – OK, I poured my heart out – and the tears flowed and my heart was heavy, they just listened. And they gave the best advice. They challenged us to think about details I don’t want to think about. They told us to plan ahead, to made decisions now so in the midst of stress, in the times of failing health, we will already be able to move forward because we planned ahead. But let me just say, talking about the death of a son who sat between us, swinging his legs forward and backward, forward and backward, as he bounced up and down in his chair was hard. Because we all die. We all have failing bodies. And Ryan may outlive me. Who knows. I don’t know what God has planned. But Thursday we were told to plan for an unknown future. Where’s that detailed list of what to do next, like a recipe. Ryan’s body is giving us signs that it wants to keep weakening. That it wants to fail. That it is being ravaged and is getting tired. But then we have those precious, hold onto as tight as possible and never miss a thing moments when he bounces in his chair, squeals and spits and laughs, when he seems so alive. So Ryan-normal. And what a validating moment we had when finally, after all these years, a doctor finally said what I’ve needed to hear so I know I’m not crazy, that I’m not making all this up. He looked me in the eye and said “if you know your son has a degenerative disease, then he does. Parents know these things”. He sees it too. Even without a name. Even after two rounds of genetic testing and still no answer. There is a gigantic rift in my brain that says don’t worry or think about what might and will probably come with a rivaling opponent that says prepare now so you don’t get caught in the storm without the necessary preparations already made and in place. It’s tough. I admit that. It’s very hard. And I can get very angry and tearful over all this medical junk. But I can’t ignore what is in front of me. That would be irresponsible on my part as a parent. I’d rather only deal with the little boy who was pulling Kleenex out of the box during our meeting and throwing them over his shoulder then looking to see where they landed as he giggled in delight at his antics. But that sweet little boy who lives such a joy filled life also houses a monster who wants so badly to defeat him. And that monster has to be faced too. So we relish the good and keep our hearts in a place of thankfulness for such a thing called palliative care that loves us and our little boy and promises to walk thought this tough season with us.

* This touched my heart. It’s from Proverbs 31 Ministries which is an amazing ministry to women. Simply beautiful. It’s from Priscilla Shirer. “This is God’s way: Putting extraordinary tasks on the plates of ordinary people so that ordinary people can see what an extraordinary God can do through them.” How cool is that word picture. I love it. I’m amazed and in awe of some pretty ordinary people who have crossed my path. They have stories of resilience, of faith, of heartache, of healing. And it challenges me to trust that my story will also be extraordinary. Not because of me. I certainly don’t crave or desire attention for my life. I’m simply living the life God has called me to so He can do whatever it is He desires to do through me. We never know whose life we will touch when we allow God to do what He wants through us. I’m simply along for the ride. This statement challenges me. It calls me to prayer. To pray that the dreams Travis and I have for our future, for the future of Ellisbrook, will be a story of God’s extraordinary work. All I see right now is that big obstacle on the asphalt. But our dream is God given. It’s not ours to claim. And someday we are trusting our dream, what we firmly believe God is calling us to, will come to fruition. And that it will be extraordinary. And life changing to those we get to serve. Because we are simply ordinary people who serve an extraordinary God.

* I think, no, I know, it’s easy to compare our own lives to those around us. With modern technology as it is today, it is far too easy to spy on people’s lives. To see and experience and know lots of details about others without getting too close. And with that knowledge of what others are facing comes the ability to quickly judge. We are all guilty of this one whether we choose to acknowledge it or not. Even this week I caught myself telling Travis this person has it so easy and that person never gets a break. But what I fail to remember is that each of us has a journey all our own. Every one of us will face good, we will face hardship, we will go through the fight of our lives, we will be blessed beyond measure. But one person’s battle may be nothing to someone else who has faced pain beyond words. And another person’s bounty may be excessive and extreme to someone else. God puts us all on different paths, gives us all unique dreams, blesses us all with varying degrees of health and wealth and ministry all our own. So let’s not judge each other. Let’s not let jealousy and envy and critical thought processes and condescending looks find us. We all have a unique life book with our own stamp on it. I desire to make my mark in whatever way God calls me to. And I pray each of us finds that peace on our own, personal journey to learn what it is we need to learn, to do what we are called to do, to enjoy the moments, to give when we are blessed with more than we need, to come along side and embrace those who need a loving touch, to pray at all times and to give glory to the One who gave us our own story. Because in spite of the muck, the dreary, the hard and the stress, life is good. God is amazing. And there is always, always, always blessing when we choose to focus on it. Perspective is everything and in choosing to focus on all that is well and happy and abundantly good, we get to live a life that overflows with God’s peace, with joy beyond understanding. He’s a loving Father for sure.

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.

I love this photo because it’s exactly how I feel right now. I did not get the job I was hoping for but that simply means God has something better in store. I am still doing lots of flu clinics and am enjoying those very much; and why wouldn’t I since I am very social and love to talk to people. Patience is not a virtue I was abundantly blessed with, but I’m learning as I grow that God works in HIS time, not mine; and His timing is always, always best. I am not sure what direction the Lord is moving me in and my sweet dad reminded me of that this morning with the following email.

I honestly think you are shorting yourself and everyone else…perhaps even the Lord…if you don’t look beyond what you are presently considering. It is like the Lord we serve to put a vision you will think about or consider only to alter it into something you would never consider. Maybe it is Ellisbrook, maybe writing or speaking, maybe both, maybe just being Kim.

I only know that this is a time of growth and waiting expectantly on the Lord. It is amazing the peace I feel in the midst of an unknown work situation. And maybe my dad is right; maybe I’m not suppose to stay in nursing. Maybe I’m going to move on to something else. Maybe He is calling me into ministry or working with special needs or something else I can’t even imagine. I have no idea. But as He has told me over and over again in the past month or two from Psalm 27 – wait for the Lord, be strong and take heart, and wait for the Lord.

God has blessed us with peace, with a strong marriage in the midst of financial instability, with laughter and health and joy. And I’m finding that as I walk along the path set before me, I’m able to enjoy the beauty. It’s focusing on the beautiful, bright flower growing in the midst of the weeds, being able to see the little speck of sunshine pushing its way through the dreary clouds. If I only set my eyes on all that is ugly or wrong or dreary, I miss the beauty that is right before me. Life is all about perspective and attitude. Either we choose to focus on all that is going well, all that brings joy, or we get lost in the muck, in the stress, in the fear and the hopelessness. It’s a choice. And while I have no idea what tomorrow holds for me, today I am going to make the choice to be free from worry about jobs and money and health insurance. I’m going to focus on the One who holds me closer than I feel, who delights in me beyond what I can understand, who loves me fiercely and desires to bless my socks off. Because at the end of the day, He is God and I am not. I can not change my circumstances, those things that are out of my control, but I can trust them to a very known God who doesn’t need my resources or my opinions and my ideas to have His way in me. He can and will bring to fruition what He desires for me. My job is to see beauty in the muck and the wait, to trust in the midst of worry, to praise Him in the midst of impatience.

“Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy.” James 1:2 (NLT)

I love, love, love this photo! Madonna just remodeled their pediatric outpatient waiting area and this is on the wall above some of the chairs. It made me think instantly of Ryan and all the other little ones facing battles for health and wellness. There are many. And they are definitely heroes. So many of our kiddos don’t get to experience the childhood that most of us got to taste, hear, see, smell and touch every single day. But they are resilient and if you ever want to see someone who knows how to dance in the rain, laugh through the pain and live life to the fullest in spite of difficulty, find a child battling cancer or a life altering disease or the loss of a limb or the heart break of a parent taken too soon. That is the essence of joy right there. It is I Thess 5:16-18 in the flesh ~ Be joyful always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus. Because little ones know how to do that.

And in this warm and cozy, cinnamon-smelling place where I get to rest my head every night and wake up every day to sleepy eyed kids who give the best “I love you momma” and squishy hugs, we have three superheroes who are often found behind the scenes, in the background of the smallest superhero’s adventures. Those three are the real superheroes in this house. They are the ones who sacrifice time with friends to serve their brother. They change a 100 pound boy’s poopy diapers without grumbling, they stay up late to make sure he is tucked into bed when mom and dad aren’t home even though they wished they had been cozy and comfy in their own bed an hour ago. They patiently pick up toys and socks and every other little thing their brother throws all over just so they can enjoy the sweet giggles that escape him when he throws things. They keep him secure on the edge of a chair or gently lower him to the floor when he is standing as seizures ravage his body and make him unsteady. They whisper sweet promises of love as those same seizures attack him for long periods of time. They hold their brother and cuddle him when he is crying in pain or gagging because his stomach once again wants to revolt. They cry tears behind closed doors. They pray the most heartfelt requests for comfort to a God who gave them this compassion and love for a broken brother and for the other broken this world holds. They serve and trust a God who is changing them and making them the superheroes they are. They wear a protective layer of resilience to guard their hearts and minds from the stares, the rude comments, the judgmental laughter. They know how to laugh in spite of stress, how to put on a happy face and encourage their friends in spite of their own breaking hearts. They take the assignment before them and instead of being angry at the big boss upstairs, they embrace the good, the bad, the ugly, the laughter, the smiles, the nosey kisses, the snuggles while watching baby cartoons that don’t interest them.

And I, along with Travis, get to be the keeper of the gate at this home filled with superheroes. It’s my privilege and honor to feed them, pray for them and be blessed by the goodness they bring into my world. My superheroes – Brad, Sidney & Trevor – are God’s angels in the flesh.

HAPPY BIRTHDAY SIDNEY & RYAN!

That’s right….tomorrow, October 7th, is a big day around our house. Sidney will be 14 yrs old, and Ryan turns double digits, the big 1-0. I will never forget how upset I was that Ryan was going to be born on Sidney’s 4th birthday thinking he was ruining her day. But now that things turned out as they have, she relishes that they get to share their special day. I can hear her in her room right now talking to Ryan who is sitting on her bed. She is singing to him and telling him all about tomorrow and how special of a day it will be. She’s talking about where we should go out to eat for dinner and asking where he wants to go, telling him he is turning double digits and asking him if he thinks his para and teachers are going to do anything special for him at school tomorrow. He is such a good listener and never argues or disagrees when Sidney picks a restaurant. She picked chocolate zucchini cake for their dessert, and he didn’t argue with that one either, nor did he care that she doesn’t want birthday donuts this year but instead wants her candle in a pile of pancakes. One of them gets to celebrate turning a year older and enjoy the day being just about her; the other has absolutely no idea he is turning a year older nor is that a concept he can even begin to grasp. As the years go by, the emotions of this one short day that rolls around every year become more and more conflicting. There is a chasm in my heart on this one day.

We get to celebrate the beauty of a young woman turning fourteen tomorrow. She is beautiful inside and out, and the love of Jesus radiates through her life. She is energetic, helpful, fun loving, competitive, caring, passionate, intuitive and social. She knows what everyone should be doing at any given time and can run this household all by herself. She is the substitute administrator of this house and loves responsibility. And she’s very good at it too. For years now she has been the mini care taker of all three of her brothers and makes sure the older ones are up and moving every morning when she doesn’t see them upstairs by 7 am or a little after. She knows just where to find the antibiotic ointment when one of them needs it, where the nail clippers or pliers or highlighters are hiding, how to find a recipe for this or that, how many ibuprofen to take when one of them has a headache, where and when everyone needs to be out of the house to get to practice or a friends or a church event. And it’s not that we ask these things of her. She does them because she loves it, because she loves her brothers, because she is a natural born care taker. But aside from that gentle, thoughtful side, she is also very social and loves time with her friends. It is music to my ears to hear her laughing and talking and having fun with her friends behind the closed door of her room. She hates drama and is very picky about who she lets into her inner circle. And while that circle is small by choice, she is fiercely loyal to those who get to take a piece of her heart in their hands. I’m so very proud of the young woman my Sidney is becoming and can’t wait to see what God has planned for her future. She loves Philippians 4:13 which hangs on her bedroom wall ~ “I can do all things through Christ who strengthens me”. My Sidney, I love you beyond words, sweet girl of mine, and I can’t begin to tell you how proud I am of the beautiful young lady you are. It is a privilege to be your mom and I hope you know how very loved you are by all three of your brothers and both your dad and me too. Happy birthday sweet girl!

And my youngest, the baby of the family. I just don’t know where to begin with him. My heart is torn between celebration and grief. It’s been a tough few weeks for some reason and the sorrow I feel is still spilling out, even overflowing into his birthday celebration. But every year is hard. Birthdays are suppose to be about celebrating another year of growth, maturity, learning new things, expanding horizons and seeing kids grow and change. But Ryan’s birthday never seems like much of a celebration to me. Oh sure we sing happy birthday, take his picture on the counter every year sitting next to his only sissy under the birthday banner. But he doesn’t understand, grasp, celebrate or join in the fun. Because he can’t; he simply has no idea what a birthday is. His body gets bigger, his age gets older, but he remains a baby and the gap between physical and mental abilities gets farther and farther apart. And this year as I look back at the past twelve months, I don’t feel the same joy and pride I have for Sidney as she matures, changes and blossoms. Instead I feel sadness for the loss of words, the loss of strength, the loss of engagement with others. It’s not a huge decline that happened quickly but instead it’s a slow progression of loss. I’ve struggled so much lately with the unknown monster who is taking residence in my birthday boy’s body. I want a name, I want to tell this disease I hate its progression, I want to scream “I hate you with every ounce of my being” and have a name to scream at, I want to know what the future predicts for him, I want to know what complications are normal to expect, I want to know if my fear of the other kids passing this same terrible unknown disease to their children some day is possible and justified. But those are things I will probably never know because this monster is silent, he is divisive and tricky and refuses to be found. But I can’t let myself focus on all the sadness, all the unknowns, all the moving-in-the-wrong-direction stuff for too long. Because the truth, the most important perspective, the big picture, the beauty of this almost ten year old’s life is this – my Ryan is changing the world exactly as God intends, one life at a time, one sweet moment of beauty and laughter and joy as they come. Good grief, the Lord has changed me in ways I don’t even comprehend just by being his mom. And it’s such a privilege to be a part of his life, to get to raise him and care for him and love on him every single day. Because every time the sun sets, I get to be one of the few to tuck him in to bed, I get to give him the last nosey of the day, I get to hear the last squeal and see the last smile. And that is beauty at its best. And then I get to repeat it the next day and the next and the next. There are no words to describe the love in my heart for a broken boy whose body wants to fail him. Because yes, he is broken, but he is amazing and loveable and captures the attention and affection of nearly every single person who has the privilege of being a part of his simple little world. He changes people without them even realizing it. So for however many more birthdays we get to celebrate this cute ten year old boy who blazed into our family and changed all of us for the better, I am going to choose to be thankful and joyful and enjoy every single minute of an amazing life that blesses the socks off of me.

God is so very good, and I will never be able to thank Him enough for the joy these beautiful people bring to my life. So happy birthday to two of the loves of my life. Your dad and I are blessed each and every day by you. You both make me smile. Happy birthday Sid and RyRy!

 

Autumn is here, and we have spent lots of time at football and volleyball games.  It’s fun to see how the kids progress from one year to the next.  The older three are doing well.  It’s hard to believe in six days we will have two birthdays to celebrate – Sidney, 14 and Ryan, 10.  And in two months Brad will be 16 and driving!  And only three short months later, we will officially have three teenagers; this age is such a blast – really! Ryan has been having a tough time these past couple of months and can’t seem to pull out of it.  I’m certain in the deepest part of my heart that it’s our new normal as hard as it is to accept.  He slumps over all the time now and never sits up tall and square like he has for years.  His legs are getting weaker and his ankle braces are now causing sores on his lower legs because they are not tall or strong enough to support his weakening muscles (we will see a pediatric ortho doc in a week).  He is quieter and drools more plus he lays around and sleeps more too.  Don’t get me wrong…he still smiles and squeals, that just doesn’t happen as often as it used to.  I would be lying if I said it’s been an easy adjustment.  I fight the tears often and realize that while we can’t go back, I am grieving the boy he used to be – the energy, the mischievousness, the squeals and laughter.  It’s still there but in very small doses.  These past nine days have been rough as well because he has been sick with on and off again fevers, gagging, throwing up, decreased appetite, smelly breath, runny nose and loose stools.  Travis had his abdomen x-rayed while I was in DC (we had a great time) and thankfully that was negative but he just can’t seem to get over this one which is the norm now – he fights a simple illness for 2-3 times longer than the average person.  His poor little body is just tired.  I did take him to the pediatrician yesterday to check his ears, and he was put on an antibiotic because his throat was so junky and he has a lot of drainage which is obviously leading to the bad breath.  Hopefully he will be felling a little better tomorrow and able to go back to school.

I am still searching for a job which is OK; God has provided in amazing ways and I know He is going to reveal the right job in His perfect timing but I can’t say I’m very patient in the wait.  I am doing flu clinics for a company I applied for and am enjoying the opportunity. After being off the night shift for a month now, I can say I feel human again.  I can’t believe how much more alert, engaged, positive and content I feel.  I don’t miss my old job in the ER one bit and wouldn’t go back to that environment if I had to; I don’t want to be that old Kim again.  I’m actually really excited to start fresh and am praying very specifically about one job I interviewed for that I really want.  I know God has a perfect plan and I try very hard not to get ahead of myself and wish too much for what I think is the right job.  Otherwise things are as they should be which means life revolves around the kids’ schedules, and Travis and I cherish the time we get alone.  God has been gracious to provide everything we need and even in the midst of waiting on Him for my job situation, grieving the new normal with Ryan, cherishing every day with busy kids…my heart is full.

I would like to ask for prayers for a very precious family.  Jason and his wife Kara have four children, they live in Colorado where Jason pastors a church and Kara is fighting cancer.  She’s already gone through the whole regimen of surgeries, radiation and chemo for breast cancer, but in the past two weeks or so when she went for what was supposed to be a routine follow-up, she was told the cancer may have spread.  Just yesterday she had another surgery to remove her reproductive system, and it was confirmed that the breast cancer has spread to that area and I believe also to her lungs.  Please pray for this wonderful family.  Kara has an amazing blog I encourage you all to follow as she is a very creative and touching writer.  Jason’s mom went to high school with my mom, his older sister is one of my older sister’s dearest friends, Jason, Travis and I went to jr high and high school together, Jason was the best man in our wedding, Travis was a groomsman in Jason’s wedding, and our families remain in contact after all these years.  Here is a link to their blog:

http://mundanefaithfulness.com/

Thank you for your continued support and prayers for our family.  We have been so very blessed by a community of believers, family and friends over the years whom we cherish in ways our words can not describe but in which our hearts remain blessed.  You are all so very loved.  Blessings to each of you!

This past month has been interesting. Oh sure it’s been wonderful with football, volleyball, watching and listening to the kids do their homework with their headphones listening and singing to music or watching football on TV with the occasional comment about their Fantasy Football players in the midst of studies. It’s been full of trips back and forth about a thousand times a week to three schools, the football field, the volleyball court. But I love it. I love carting my kids around because I’ve already calculated that in six years Trevor will be in college and all of this will be gone. So I’m going to love every minute of it right now while it is here and I am able to enjoy it. Even with the dirty, smelly uniforms, the clumps of mud in the entry way from football cleats, the pencils and pens and paper left on the kitchen and coffee tables, the shoes dropped on the tile floor, the dirty dishes left in the sink as the kids are running off to shower or leave for practice or do homework. It’s a season and like all seasons of life, I’m learning to enjoy them while they last. Because when I turn around, least expecting it, they have changed. They have grown, their beauty has evolved, their voices have dropped, their mannerisms appear so mature. And I daily choose to relish in those moments and tuck them in the depths of my heart.

And as the seasons of my kids growing years change, the seasons of my own life evolve as well. The season that has encompassed the past four weeks of my life has been one of sorrow, of hope for a better future, of loss and unfairness and loss of trust. It’s a season I hope not to repeat any time soon but as Psalm 23 says, “he makes me lie down in green pastures, he leads me beside still waters, he restores my soul”. And that’s what my Heavenly Father is doing right now. I can’t say every minute of every day I am enjoying the beauty of today, the freshness of the green grass, the calm trickle of the fresh, cool water. Sometimes it’s easier to crank my neck as far around as I can to look back at where I came from and wish I could take a few steps back and stay where I was. But then I look at where the Lord has brought me for today and I’m thankful for the calm, thankful for the lessons of faith, relishing the act of obedience to sit still and wait. Because my truth is that where I came from became ugly. I became ugly. My morals changed, I laughed at what was far from funny, I spoke in words that made me cringe, I hardened in ways I never thought possible. The ugly came out and it stayed even though I didn’t welcome it. As I was walking through my room several days ago, I stopped and kind of jolted when I realized that for quite a while, I had been saying the end of Psalm 27 over and over in my head without even realizing it. It says “Wait for the Lord, be strong and take heart, and wait for the Lord”. This is a chapter I memorized years ago and I know God brought it to mind as I was meaninglessly meandering in my safe haven to find who knows what when I caught myself repeating the promises of God. He was calling me to wait. I hate waiting. Despise it. Loathe it. I am impatient to my core; it seeps through my blood and in every bead of sweat I drop. I want things done yesterday so I can cross them off my list and move on to the next thing. I love surprises; just ask my husband and kids because every day when I go to get the mail I get a little jump in my step wondering what lovely surprise just might be in the box today. Sometimes it’s a card from a friend, a box someone has been waiting for, a magazine filled with beauty, an invitation to something wonderful. And sometimes it’s junk, endless credit card applications, bills and more bills. That’s just life. But no matter what it is, it’s a surprise each and every day. And here I am sitting still waiting for the next surprise. The next move, the next assignment God has for me. I wanted it yesterday but today I am still waiting for the Lord, still watching the sun rise and set, still listening to streams of refreshing water trickle past me, still plucking blades of grass as I wait. And while there is beauty in waiting, in learning to surrender my impatience and my desire for what I want in my own time, there is organizing and cleaning and restoring going on in my soul. Sometimes I just want to sit on the naughty bench and say “OK you got me here, get the lesson over with, let’s hug, make up and move on” like I did when my kids were little. But I know it’s all about His timing, what I need to learn in the wait, cherishing the blessings of His goodness when life seems to strike another blow. And one of these days, that blessing will come and we will move on to whatever comes next. But I don’t ever want to miss what I need to learn today. I don’t want to check out and find myself having missed the grace I was given, having rushed so quickly I forgot the little answered prayers; I want to take in, appreciate, relish and savor the beauty of God’s love for me today, the joy of my salvation, the daily provision, the thankfulness that overflows my heart for all that is right and good and lovely and true. Waiting is hard, but in obedience, I wait.

So many of you know how transparent I have been over the years in the struggles we have faced with Ryan, finances, health, jobs, this and that and the other. And I really believe God calls me to be transparent so He can do what He needs to do in my own life as well as the lives of those around me. It’s my testimony of His goodness, my obedience to His calling. And so today, as hard as it is, I am going to be transparent once again even though I am reluctant, even though the hot tears stream down my flushed cheeks, even though I am fearful of others opinions, thoughts, judgments. Because the hard truth is that I have not had a job for the past four weeks. That’s really difficult to say. But it’s my truth for today. It’s my story. It’s my time of living Psalm 23 and 27 as I described above. And I don’t have a job because I was accused of doing something I did not do. Because someone passed judgment on me and didn’t take the time to find out facts and truth. Because for whatever reason, God wanted me to move on and so I have. I was not fired, I quit, but it was not in the timing I would have chosen. The details do not matter. God and my family and closest friends know and are loving me through it. What matters is that I find myself, and my precious family, in a precarious spot feeling alone, frightened, disappointed, and sad. Feeling like I was punished for something I did not do and so very disappointed no one cared to find out the truth. I have no idea what the Lord is doing in my life and why He chose to allow the events of the past four weeks to play out as they have. I have not enjoyed it, I am a huge believer in justice and truth. But no one seemed to be interested in truth and facts so I am here in the lonely, in the desert, in the hot and sweltering fire trying to figure out what God has for me next. And I know goodness is coming. I’m actually experiencing it today. The verse before wait for the Lord, be strong and take heart and wait for the Lord at the end of Psalm 27 says this – “I am still confident of this; I will see the goodness of the Lord in the land of the living”. And that is my solid foundation; the truth that God has my back. There are so many truths that keep my feet moving with one step in front of the other. The truth that God’s mercy is new every morning, that He is the one who delights in me, that I am here for His purpose only to do His will in His perfect time. The truth that says “if God is for me, who can be against me?” and that “God will supply all my needs in Christ Jesus”. Oh he doesn’t do it in this impatient girl’s time, but He does supply my needs. There has never been a time we have gone without; the Lord has always, always, always supplied exactly what we have needed when we needed it. Never more and never less.

So please pray with us during this time of waiting. We sure need it and we cherish the prayers of those who surround us and walk this journey at our side. He is a good God and no matter how many times I have to repeat Ephesians 6:10-20 over and over again in my mind, I know this to be true – my Heavenly Fathers loves me with a love I will never grasp or understand. And part of that love means my perfect job is coming. It’s not in my time, it’s not in my plan, but it’s what’s best and I know that in the deepest crevice of my soul. So in my ugly, in my deep time of sorrow and waiting and being completely vulnerable, I will wait for the Lord, be strong, take heart and wait for Him to move. Your prayers are appreciated and I can’t wait to tell you all how God is moving and working and providing in the days to come. You are loved and cherished!