When I look back over the last two weeks it truly has been a blur. We have been overwhelmed with medical paperwork, phone calls, and trying to navigate the many surprises that this life can bring. This coming week we will tackle 6 different appointments and tests and hope to get some resolution and understanding for some of the newest medical issues that have popped up.

This weekend we did a Carroll first and attempted camping in the woods in our backyard with some friends! We spent the first part of the evening swimming in the therapy pool, eating hibachi, and playing laser tag. Then when the sun went down we headed into the woods for a bonfire and s’mores.

Levi was an excited and anxious mess but managed to stay in the tent all night, much to our surprise. Malachi was very intrigued by the concept of camping, but we were having a hard time navigating how to make it happen for him and his 3am bedtime. I had decided that if he said he wanted to sleep in the tent we would absolutely make that happen. But after an hour or so at the campsite he voted to sleep in the bed for the night.

By the time I got him back up to the house his heart rate was high, his oxygen levels were dangerously low, his seizures started sparking, and his legs were hot to touch like he was running a fever but his core temperature was normal. We think the smoke from the bonfire sparked an immune response in him and his brain went haywire. By the morning he was relatively back to his normal self but started to struggle with his breathing again this afternoon.

Malachi’s body and brain always have trouble adjusting to new seasons. This is his first Fall post-op and I am hoping we see a difference in how his lungs manage these changes!

Our soccer season still has about 3 weeks left and the boys are still enjoying being on the sidelines with the team. It is one of our favorite things to do as a family, and all four of us truly look forward to games and practices with the teens.

Levi hasn’t offered any more of his infamous pep talks. This is year 14 for us coaching at the high school! I remember finding out I was pregnant with Malachi in the middle of the girls season and having to make up excuses as to why I was no longer kicking the ball.

I also remember specific games when I was pregnant with Levi and I would get so into the game he would start going wild with excitement in my belly. I would have to sit down and calm myself down to keep him from wildly kicking me.

Levi is also doing great in school, particularly in science and history. I have been pleasantly surprised by how much he is retaining, and he comes home excited to tell me about the new historical events they are learning about.

Levi’s cerebral palsy makes handwriting exceptionally difficult for him but we are seeing progress in his letter formation. He is reversing several of his letters, even with a guide to reference, so I am pursuing getting him tested for dyslexia. But look at this awesome progress below!

Malachi is still enjoying school and also gets to spend some time at work on the farm with mom while Levi is in school. He looks forward to those special mornings and can’t wait to get the day started.

On Saturday I had the opportunity to speak at a fundraising event for the therapeutic riding program that both boys use for their hippotherapy (physical therapy on horseback). Malachi has been riding for nearly 9 years and Levi has been riding for quite awhile as well.

We see so much progress with this specific therapy, and both boys look forward to their sessions every single week!

I always enjoy getting the chance to share some of our journey with others. I think it is so important to share openly about the hard parts and the hidden blessings. It is also a way for us to share God with others, as He is on every page of our story.

Malachi got to be my date for the evening, much to his excitement (and Levi’s dismay).

He loved the attention of being the only kid there. And he also thoroughly enjoys hearing his story shared and people coming up to meet him afterwards. He feels like a celebrity!

Talking through the different parts of our journey as parents has always been hard to organize. There are so many emotions, trials, victories…it truly is a roller coaster and the emotions that roller coasters elicit are hard to put into words.

This particular speech was slotted for only a few minutes, and whittling our story down to minutes was a hard task. As I shared some of the different chapters I represented some of those hard moments with a screw in a vase, the vase representing my vision of what motherhood would look like.

As I told our story I added screws to the vase for all of the hard parts we have gone through.

329 nights in the hospital

Over 50 surgeries

20 daily medications

Dozens of diagnoses, specialists, and bad reports

As the jar filled up with the screws I explained that there are a lot of sharp edges and hard things that have overtaken that initial vision I had for our family. There are things I will never unsee, emotions that can never be forgotten.

But the backdrop of hard brings out the beauty in the good. And there is so much good in our lives. There are so many blessings that are hidden throughout.

Philippians 4:8 reads: “Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.”

It is easy to lose sight of the good things God is doing. But the roses in life can always be found when we look hard enough and fix our eyes on the unseen rather than the seen.

I am reading through Romans with a small Bible study group and I spotted a sentence that caught my eye in Romans 8:24.

“But hope that is seen is no hope at all. Who hopes for what they already have?”

One of the biggest hidden blessings of this life is a renewed understanding of hope in Christ. A fresh faith that sees this life as a pilgrimage with a purpose.

Praise the Lord for gift of hope and the knowledge that there we were made for more than what this world has to offer.

Please pray for our family this week as we navigate through some new waters.

Sincerely,

Leah