I have been trying to get this blog update typed for days now and every time I look at the clock to sit down and type it is 2am and sleep wins!

School starts back in less than a week and we have been filling our last few weeks with all kinds of adventures. The boys have been spending lots of time on the farm with their friends (both animal and human).

Last weekend my sweet grandmother turned 90 years old and we had a big surprise birthday party for her in Ohio. With the car accident we weren’t confident we would be able to make it there, but thankfully we secured another handicap rental van and made the drive. The boys were so excited, particularly Malachi. He loves his Grammy. He giggled and giggled as we packed the car.

Here is Grammy with several of her great-grandchildren. On a very random side note that might fascinate you….check out this side by side photo of my Grammy and I from 4th grade. The resemblance is uncanny!

While we were in Ohio we got to spend time with family and eat some nostalgic food from our childhood.

Levi is determined to grow taller than his grandma! Each time we see her he is a few inches closer to his goal.

We also visited a place I used to go as a child called Young’s Diary Farm. They have several small rides for kids and out of all of them Malachi really really wanted to go down the giant slide. It took a lot of sweat and effort but I managed to carry him up those stairs and give him a ride down! My entire body felt it the next day for sure.

The boys will start back to school next week which is quite the process for medically complex families. Routine changes are hard, and the medication schedules have to be adjusted to keep them from having to get meds at school. So that means easing Levi’s meds back 3 hours each morning/evening and trying desperately to get Malachi into bed before 3am.

Levi will be entering the 1st grade.

And Malachi is going into 7th grade. He is doing a hybrid blend again this year for schooling, going part time to a local private school where he will have opportunities for inclusion in the general education class. I also think this year he will get to be a teacher’s aide in a classroom, which he is very excited about.

And he finally got his new teenager wheelchair! This round he picked out camouflage. This photo was from the delivery day. He wanted it jazzed up a bit more with snakes and spiders and more camo. So we went to work and added some special touches that he is awfully proud of.

This has been our best summer yet in the fact that we have felt like a “normal” family. I was looking through Facebook memories today and on this day alone we were hospitalized 5 different years our of the last 7. Our July is usually full of medical appointments and drama. But this year we were blessed enough to be able to knock them all out at the beginning of the summer, leaving a true summer for our family.

Our van is still being repaired and we are hoping to have it back within the week. The wreck bent a lot of frame pieces and repairing it proved to be a pretty big job.

Levi has been struggling with anxiety since the wreck and it is manifesting itself in some really big ways. Things that used to not bother him, like thunderstorms, now set him into a complete panic and his anxiety consumes him.

We have been having lots of talks about what trusting God looks like and what “faith” truly is. We have gone through the Bible with him, talking through what it looks like to trust God, using Biblical characters to show him what a life of faith looks like. He understands it but when the hard moments come he slips back into complete and total fear.

Oh, how relatable that is for me.

It is easy to trust God when the sky in life is bright and the sun is shining. But it is in those dark cloud moments that you find out if the roots of your faith have grown deep enough to handle the winds in life.

As I have been telling Levi (and reminding myself), trusting in God is an every day, hour by hour, minute by minute choice. It isn’t ever something that we can master, and it is a muscle that can weaken when not in use.

Malachi and I have been having lots of good, deep talks lately. I have been worried about his mental health, as we have had to tell him no to things, like going down the slide more than once. He has been experiencing a lot of disappointment lately and oh how that breaks my heart for him.

We have also talking about relationships and friendships. Being a long term friend to Malachi is difficult. He can’t talk to you on the phone and he can’t participate in just any activity. Friendship with him requires physical presence and intentionality. And not everyone is ready for that level of commitment.

As a result, many of his friendships over the last few years have disappeared, leaving him feeling disposable (or at least that’s what I am gathering from our talks). I find myself getting very protective of Malachi, recognizing that I opened the doors to many of the friendships that have dissolved. I don’t want to lay out the welcome mat to people that will hurt him. He values people and “seasonal” friendships is a concept that he doesn’t yet understand. There are sides to medically complex parenting that lay dormant and this is a new one to navigate.

Please pray for wisdom for us as parents, and for peace in the boy’s hearts for the hard things they are navigating.

Thank you for being patient on this update and taking the time to check in on our family!

Much love,

Leah

Jake and I have been talking about how much fun this summer has been, particularly our ability to relax and just be present as a family. We have had all sorts of adventures, including a beautiful fireworks show the night before the big day.

The 4th of July rolled around and we had the idea to go to a late night movie as a family, assuming most families would be watching the fireworks, giving us the theater to ourselves. Movies are always a little more complicated with special needs kids as many things can trigger seizures. I also have to narrate the movie to Malachi, whispering in his ear, and when there is a full room I am always self conscious about disrupting the movie for others. There were a handful of other families in the theater when we arrived and when the lights came on at the end of the movie we realized that it was full of other special needs families that we knew from various legs of our journey! I guess we all had the exact same idea and plan!

We all had a good laugh then we headed toward home, stopping for milkshakes on the way. We made it about a mile from home and we were hit by a car trying to pass us (on a double yellow) as we turned left- he said he thought our left turn signal was a signal for him to pass us. He smashed into the driver’s side of our wheelchair van and in addition to body damage it broke the arm holding the driver’s side tire on.

Thankfully we were all okay and no one had any injuries. Levi was an emotional mess but we are praising God for His protection. The car is not drivable so we are working on solutions while we wait for the repair to happen. This weekend we were finally able to get the car into a body shop to start the repairs process. And we have a rental handicap van starting this week.

Later that night I was looking over Malachi and found a protruding piece on his side. This was NOT from the wreck and was something I had spotted right before we left for the movie that night as Jake was putting him in his chair. He didn’t seem bothered or in pain so I decided to wait until we got home that evening to investigate.

It rests right on his incision and felt very much like a piece of hardware so my brain immediately went to the worst possible outcome- another loose screw or rod. This spot popped up seemingly out of nowhere overnight and was not there the day before. And Malachi tremors when we touch it. I sent these photos to the on call orthopedic surgeon and he suggested we come in immediately through the emergency room.

Unfortunately we were without a way to get him there. We could rig him up in Jake’s pickup truck but it isn’t the best positioning for him for the 3 hour drive there. I asked the doc if they would do anything over the weekend if we did bring him in and they explained they would likely wait until Monday so we asked if we could also wait until then and just be cautious over the weekend. They agreed and we started the process of finding a car to transport him and his chair in.

A friend came to the rescue, allowing us to borrow her larger SUV. It was a tight fit and required disassembling the chair a bit but we were able to rig it up for Malachi to transport safely and off the to the hospital we went first thing Monday morning- loaded down with enough supplies for what I assumed would be another hospital stay.

We made it to the hospital by lunchtime and checked his x-rays, which confirmed that all hardware was still in place! It is a portion of his floating rib that seems to have suddenly shifted. There isn’t anything we can do with that piece aside from remove it, which we obviously aren’t interesting in doing unless absolutely necessary. So we are just being extra cautious with that side and watching for skin breakdown or pressure sores. It definitely feels freaky though!

And I was absolutely excited to be able to drive home that same day!!

We went from a family movie and milkshakes to a car wreck and emergency hospital visit in just a few short hours. And it emotionally drained me. Malachi had a great attitude, excited about spending alone time in the hospital with mom. Levi watched me pack the hospital bags and just cried and cried, preparing his heart for another long spell apart.

It is wild how fast things can change with medically complex families. We are always a few short steps away from hard.

But this one fizzled quickly and we are back to life, as normal as it can without a handicap van. We have spent most of the week at home and we are ready to be able to be mobile again and prepared for emergencies.

Levi has been working on swim lessons and we have been spending a lot of time in the water outside of lesson time to reinforce the things he is learning. His breathing is hindering him slightly with how long he can stay under but he is improving. And Malachi is also loving all the extra swim time, especially the nighttime swims.

Summertime is always a tricky thing. The more we spend time around one another the more jealousy tends to brew. I get jealous of Jake’s sleep filled nights. Levi gets jealous that Malachi gets to “stay up so late”. And Malachi gets jealous very easily in all things that Levi gets to do. Earlier this week Levi and I were playing a game of memory and Malachi signed that he was upset. He wanted to be playing but I couldn’t think of a way to play the game with him, as he can’t see the cards or the layout.

Malachi realizing he is being left out and signing his sadness/disappointment to us is absolutely one of the hardest things for me to navigate. I can feel my heart break with his and knowing that I am doing something that contributes to him feeling left out is a guilt ridden ride for sure. We started to search for something similar he could play too and found this sound memory game on Amazon.

He could hear the pieces, each pair with a unique sound inside. But how would we identify each one where he could sign the match without seeing them?

We developed a system where we named each piece by row and place- so 1a, 1b, 1c, 1d, 2a, 2b, etc. And then we gave it a whirl. He would choose a bell and we would identify the label. Then we would ask him “Is the match in row 1? (No) Row 2? (Yes) 2a? 2b? 2c? (Yes)” By game three he was beating all of us, legitimately and fairly. I have been so impressed by his awesome ability to remember each sound so accurately and match them up. And he was SO PROUD to show off his intelligence.

Parenting Malachi has so many wonderful surprises within it. And requires SO MUCH creativity and investigation.

Levi is now determined to beat Malachi at the game, and Malachi is loving the drama. Game on.

Summer has been a wonderful opportunity to reset in a lot of ways. Having Jake home has given me a chance to re-establish many of my routines, including time in God’s Word. The opportunity to sit down and focus has felt like drinking ice water on a hot day.

This week as I watched Levi’s intense reaction to the car accident, followed by his reaction to me packing for the hospital I was reminded again that he is carrying a heavier load than most 7 year olds. And then I look at Malachi and see the physical, emotional, and mental load that he is dealing with on a daily basis and I feel a pang in my heart- wishing that life were easier for both of my kids.

I have a walk with the Lord, and have had time to hide the truths of God’s Word in my heart. I have had the opportunity to grapple with my faith, to ask the why, and learned to accept the no, recognizing His mysterious ways and plans. But my boys are so young- in age but also in a walk with God.

I can’t take away Malachi’s pain. I can’t take away Levi’s PTSD or heal his airway. I can’t fix life for my boys and make it easier to manage or less stressful. But I can teach them through God’s Word and example which direction to look when things get overwhelming. I can share my own experiences with them, casting my anxiety on Him (1 Peter 5:7) and “taking every thought captive (2 Corinthians 10:5). I can remind them that when we are weak that He is strong a hat that God’s grace is sufficient (2 Corinthians 12:10). I can teach them to use the Word of God as their greatest weapon against the many attacks of the enemy.

Parenting is a form of refinement that can’t easily be replicated. And sometimes that refinement can hurt, but it yields such beautiful changes. And what an important role we have, serving as an ambassador of Christ to our own children.

This week I am feeling challenged to re-address the areas of my motherhood in which I have become lazy, particularly in helping them develop theology and understand the gospel. And then watch as the Spirit of God does a mighty work in each of them.

Please be in prayer for some very specific needs for our family. The amount of paperwork we are currently dealing with for just medical things is overwhelming, not to mention school program paperwork and now car insurance battles. It feels like a full time job trying to keep up with everything while still maintaining med regiments and normal medical schedules. Please help us pray for favor and speediness in getting our van back and the claims settled.

Thank you for checking in on our family!

Sincerely,

Leah