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

There are a lot of unspoken conversations that take place in my heart- conversations that just don’t feel safe to say out loud as they sound so messy with no definitive “right” answer.

One of those conversations lately has been surrounding my ability to protect Malachi from mistreatment- both overt and subtle. He is such a pure child and doesn’t understand social structures or seasonal friendships. Frankly, I struggle with this too. I talked briefly about this in a post in July and the topic continues to pulse in my heart and re-evaluate many things.

A painful turn of one of my past friendships (which in turn hurt my sweet boy) has made me cautious towards so many things. One of those being whether or not I should be sending Malachi to school this year. I want to bubble wrap him and not introduce him to relationships that he will value and cherish significantly more than the other party. If I struggle with the emotions of feeling disposable then I can only imagine what it does to his naive and tender spirit.

For a typical child friendships would begin organically, but for Malachi this process requires intentionality. I want to surround him with people who display the unconditional love of God. And knowing that I can’t judge the intentions and heart of others it makes me want to just keep him home and shower him with all the love I have. But I also recognize that that isolation would rob him of so many opportunities for real and authentic friendship.

Malachi started his school year last month and I have watched him from afar, trying to hard to evaluate if school is something that enriches his quality of life. This year we increased his classroom time to 3 hours per day and he floats in and out of several classrooms with several friend groups. And after a month of school I have been blown away by how much it has changed him in amazing ways.

Malachi is now starting to communicate with other students, and they have eagerly and willingly learned how to read his sign language. Not because that kindness will be noticed and celebrated by teachers, but because they truly want to know him. The joy they have when they accurately read him communicating with them is so pure. It has also built Malachi’s confidence in being heard enough for him to attempt to communicate with others outside of the school setting.

He is regulating his sleep into a more predictable pattern, and staying awake the entire time he is at school. This has been one of the biggest surprises for me and a sign that he genuinely wants to be there every day as he is making the effort to change these patterns.

But the biggest blessing for me this past month is seeing so much joy pour out of him. There have even been mornings where he wakes up belly laughing, excited to start his day. Each afternoon as I recap his day at school with him his smiles are uncontrollable and his eyes shine with such an excitement. I can’t help but cry with joy when I see that joy.

School has most definitely improved his quality of life. And it is leading to such sweet friendships that are mutually beneficial and not one sided. He is getting to experience unconditional love from others outside of his family unit.

I also love seeing the heart of Christ that it is cultivating with the other kids. I sit in my car and watch them do such special things, like surrounding his chair and covering his eyes as a team of students from the sunlight when they wheel him outside. This week as I watched him interact with his friends at school I couldn’t help but think that these are the types of friends that would be willing to carry Malachi to the roof and lower him down through it to get him to the feet of Christ.

I am very thankful for the school he is in and the efforts they have taken to provide an inclusive environment for Malachi. In a public school system he would be in a self contained classroom, which would lead to friendships of course but not necessarily allow Malachi to experience the silliness, stinkyness, and chaos of being a typical 12 year old boy.

He is seen as a valued and cherished child of God. It is beautiful.

Levi is also enjoying the start of his 1st grade year and making big gains! The stories I could share with you from the last two weeks would keep you laughing; he always has something on his mind that leads to some pretty fun conversations.

Earlier this week he was getting read for a soccer game and telling me a story at the same time about a disagreement he had at school with a friend. He said “Mom, ______ said I was incapable.” I smiled to myself at the big word and asked him if he knew what it meant, to which he replied “It means I can’t do things right!”

I was pleasantly surprised that he knew the correct definition and then watched him come around the corner with his indignant little face, mad about being labeled “incapable”….and his shirt was on completely backwards.

Our high school soccer season is in full swing and the boys have been enjoying being side line for the games and practices. Levi has been taking his job as Manager very seriously.

Last week the girls lost their game and we were doing a final talk, highlighting the good and the bad from the night. Levi asked if he could say something to the team and I said “sure”, surprised he had something to say. He put on a very serious coaching face and put his hand out, sternly pointing at them and saying “I am ashamed of all of you.” I was flabbergasted and reversed that speech as quick as possible.

We had just watched the movie “Radio” with him and I guess seeing an intense coach on the big screen impacted him more than we imagined haha.

We had an incredible amount of medical appointments over the last week and Levi’s GI doc was happy with his progress on the growth curve. We have been trying to increase his g-tube nightly feeds to counteract the increased calorie burn from recess and school but he is very sensitive to these changes. Even the slightest increase of feed was making him wake up vomiting! It seems we have found a good balance for his belly and calorie count.

Levi also saw the pulmonologist last week and did a test to see if his lung function could be helped with an inhaler when he is active. The results showed that the restricted breathing is still solely from his paralyzed vocal cords.

Malachi had a CT scan to evaluate whether or not the shunt being broken was impacting his brain ventricle size. While the ventricles are a slightly different shape than the last scan the fluid level is still in a safe range. So we will continue to go in for CTs every few months to make sure his body is managing his spinal fluid well.

He also started seeing a urologist for some urinary issues and will require some testing/imaging later this month. It is always a little hard mentally when we add a specialist/diagnosis.

Psalm 91:11-12 “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.”
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I have this verse hanging in each of the boy’s bedrooms and therefore walk by it every night and every morning. Lately it has served as a reminder to me that, even though I am the primary caretaker on earth for these boys, God has commanded His angels to carry them through the life that He has chosen for them. And the angelic strength and mission is fueled by the will of God rather than the meager will of man.

Of course I want to keep their feet from striking rocks. But maybe the things I see as stones in the path that I try to avoid are the very tasks that God has prepared in advance for them to do (Ephesians 2:10).

Please pray over the wisdom we need to walk through unknown territories as the boy’s grow older and the fears change. And please pray for my ability to take every thought captive- my mind has been battling so much baggage lately.

Sincerely,

Leah