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