I am in a silly mood this evening so I figure I will bring you into that mood too by starting with a photo…

I picked Levi up from school last week and happened to notice that his pants were on backwards. I asked him about it and he said “I was wondering why my underwear kept showing in the back!” Apparently he changed into PE shorts and when he went back to his regular clothes got a bit confused haha. Oh Levi.

We have had an incredibly busy two weeks since my last post, and to be honest it stretched me beyond my limits. Settling into a new routine has been difficult. I also added in a new part time role of being a “caregiver” for Malachi through an established company.

Malachi has access to funding through a state waiver program and we have had trouble getting things approved to spend it on, like minor home modifications. One of the options presented was me getting hired through a home care company and using the funding towards my “salary” to care for Malachi. We pay this company a portion of his funds and I work 10 hours a week as his caregiver. Yes, I recognize the laugh-ability in this as I am his caregiver 24/7. But for 10 hours a week I clock-in and chart my shift, documenting all of the tasks I complete with him.

Originally this sounded like a great solution, and a way for us to earn some extra income to do the minor home modifications the waiver program kept denying. But WHEW the amount of work to become hired on as his caregiver was way more than I expected it to be! Hours and hours of classes, zoom meetings, in person trainings, etc.

I completed my first formal shift on Saturday and I am hoping this route proves to be worth the added hours of stress from these past few weeks.

Levi is having a great start to the school year! He struggles with fine motor skills and needs a lot of extra help, but he is showing so much progress. His letters last year were illegible so these are some big victories for us.

He is enjoying school and we are blessed to have him in a setting that perfectly meets his needs. Both Levi and Malachi are still continuing therapies each week and working on building muscle.

Malachi is also thriving in school and really enjoys his new schedule. He is a social butterfly and looks forward to seeing his friends each day. I have been pleasantly surprised by his stamina, lasting three hours each day!

Malachi had a HUGE weekend and he is still reeling from the excitement. This past Saturday Malachi got the chance to run in a 5k with a group called Addie Ray racing! They have special wheelchairs and volunteers to run with them. One of the runners for him was the dad of the Chick-fil-a family we connected with back in 2017 when Malachi’s post went viral!

The day before the race Malachi signed that he was excited, and the morning of he signed that he was nervous. He was very serious during the actual race, like a teenager playing it cool, which made Jake and I smile.

Here are some photos of him crossing the finish line, finishing the 5k in just over 22 minutes!

Here is a quick video from his special day:

And here is his post-race interview later that evening:

After the race he went to a school friends house for a birthday party and had the best time playing with his friends. The birthday boy made an extra effort to include Malachi, choosing games he knew he could participate in. Needless to say, Malachi’s cup was filled to the brim this weekend with joy and inclusion.

We have several big appointments over the next two weeks. Both boys see the pulmonologist and the GI doctor. Malachi has a CT scan and an appointment with the neurosurgeon to decide what to do about his broken shunt. And Malachi starts seeing a new specialist next week. Lots of hospital trips on the horizon, but hoping for some good reports!

Last week I took the boys on a quick errand and we ran into someone we had not seen in a few months. He made a brief comment about another special needs family in our town losing their son after 30 years and how lost they now were without him.

We get these comments a lot from very well intentioned people. When you are disconnected from our world it can be easy to lump all special needs kids/families into the same category. But diagnoses, outcomes, and families are all so different so I often let comments and situations like these bead up and roll off me- scared of the emotions that will bubble up if I allow myself to role play too long.

But as we drove away I looked into the back seat to see tears streaming down Levi’s face. He was doing his best to hide them from me. I pulled the car over and turned to talk with him and the dam broke loose. He started sobbing, asking me why that other boy died? I truthfully didn’t know but asked him if that made him worry about Malachi dying. He nodded yes and my heart ached for him, seeing a reflection of section of my heart I do my best to hide from my children.

We talked about God’s plan for Malachi’s life. And how he has already lived WAY longer than any of the doctors predicted. I explained that God has a plan for Malachi and that is why he is still here; and how blessed we are to have such an amazing son and brother. Malachi listened intently to every word, showing his proud face as we talked about him defying the predicted outcomes. And Levi nodded through his tears.

But my heart continued to hurt as we made the rest of the drive home. The heaviness that talks like these must have on Malachi….and the questions that must brew in his brain when others share hard things like this around him. And the weight that Levi carries, loving Malachi so much that it pains him to imagine a world without him. This is a part of special needs parenting that there isn’t a guide for. So I have to follow my heart. Sometimes that means pulling over on the side of the road and entering that space with them. Sometimes that means telling them what they need to hear at the moment…even when the words don’t match the statistics.

Last week I had the honor of speaking to a group of people in a drug rehabilitation parolee program. This was the first time I had the chance to share a bit of our story with a non-religious group, but I also had permission to talk about God within that story. The day went beautifully, and they listened with such intensity as I shared.

As I prepared for that day, I asked God to give me the right words to say and the scripture he would like me to focus on and he led me to 2 Corinthians 4:

“But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed but not in despair; persecuted, but no abandoned; struck down, but not destroyed…Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary but what is unseen is eternal.”

Oh, how grateful I am that there is more to this life than what I can see. I am thankful for the hope we have in Christ Jesus. I can’t imagine trying to walk through this life without hope in Him.

Thank you for checking in on our family, and I hope to have some good medical updates for you the next time I write.

Much love,

Leah

School is officially back in session! Levi walked in this year with confidence and excitement.

Malachi was a little bit nervous, but those nerves went right out the window when he pulled in and all the kids started shouting “Hey Malachi!”

Transparency moment- I have had some big emotions this week. Last year when we started Malachi in a new school he was very quiet and anxious. It took him several weeks to get comfortable enough to sign with his teachers and interact with other kids his age.

On day one of this year he was joking with his teachers and by day two he was signing that he wanted to sit with a different group of friends at lunch. He feels safe, seen, and heard. He came home from the first day of school giggling and he didn’t stop until bedtime. He was SO excited to tell Jake about his day and can’t wait to go back again this week.

Malachi gets to make choices about what his school day looks like and his choices make me laugh. Last week he chose study hall haha. He is attending 3 hours a day, 4 days a week, leaving a day for therapies. I stay on site for medical emergencies (a cooperative agreement we have with his school as they are not fully equipped for medically complex) and spend the time in the lobby knocking out tasks for my two remote jobs.

Having something for him to look forward to each day is just such a gift for us all. Our goal is quality of life for Malachi, and I often feel like I am failing him at that goal. But this week I have watched a light dance in his eyes again and it has blessed us all so much.

And y’all….we had to shave his mustache off. Yes, you read that right. Malachi is officially shaving and very proud of it.

Flashback to Malachi’s first ever day of school. What a little nugget he was!

This weekend Levi started talking to me about school and suddenly grew very sad. I asked him what was wrong and he explained that when he is on the playground at school with his friends he gets really tired and can’t breathe. He said “Mom, all the other kids can still breathe and they just keep playing, but I have to stop and sit down.”

I had to catch my emotions quickly in that moment and give him a big hug. Sometimes it is hard to be different. And he is officially old enough to start noticing those and mourning those differences more.

I continually tell him that God is writing a pretty amazing testimony in his life, and that it is okay that he does things a little differently than other kids. But sometimes those big concepts don’t always ease tiny hearts.

There are more surgical interventions we can do with his airway, but they will reduce or even remove his voice and his ability to eat by mouth. Jake and I have always said that we would like to wait until he is old enough to make that decision for himself.

Malachi is truly loving his new chair, especially now that we added a giant snake all twisted around the frame. He was giggling thinking about all the people in his world that will be scared of it and I snapped this silly photo. He is such a prankster.

Jake and I actually had a pretty hard conversation last night, discussing some of our biggest fears for the boys. He told me that Levi choking on food when we aren’t around is currently on the top of his list. With a wide open airway that can’t close itself, the risk of choking is much much higher.

The amount of lingering fears we hold for our boys is overwhelming. And we have to keep reminding each other that their future rests in the hands of a very capable God. He knows the rest of their story, and trusting in His timelines is a big part of faith.

In lighter news: WE GOT OUR VAN BACK! We are now working with insurance to get reimbursed in full for the rentals we had to get over the last month. But being back in my van has made me appreciate it even more than before!

It is incredibly easy to get overwhelmed in our medically complex world. I could go on and on about the battles we have to continually fight. The hoops we have to jump through. These menial tasks have a unique way of making me feel isolated in this calling and the weight of fighting each of these bills, stop signs, clerical errors, and nonsense can get very heavy.

Adding those “extras” to our everyday life, medication schedules, appointments, etc oftentimes push me beyond my limits.

I was overwhelmed this weekend as I talked with Jake about the many things I have to tackle when businesses (and phone lines) open back up Monday morning. I was explaining to him about this bittersweet spot we are in, wishing for a less strenuous lifestyle but recognizing that the cost of that trade off is our literal worst nightmare.

I oftentimes find it hard to even know how to pray. There are days I thank God for the chaos, recognizing it is a life I almost didn’t get with my Malachi. And there are days where I mourn the normal and the calm, speaking these emotions to God through tears.

In 2 Kings 6 there is a story about the prophet Elisha and his servant. An enemy king send his army to the city Elisha was in to capture him. That morning he woke up early and walked outside of his tent to see an army with horses and chariots circling the city.

“And his servant said to him, ‘Alas my master! What shall we do?’ So he answered, ‘Do not fear, for those who are with us are more than those who are with them.’ Then Elisha prayed and said ‘O Lord, I pray, open his eyes that he may see.’ And the Lord opened the servant’s eyes and he saw; and behold, the mountain was full of horses and chariots of fire all around Elisha.”

I often have the eyes of that servant, blinded to the hand of the Lord that is very actively working behind the scenes of our battles. We miss the rescue that is taking place when we continue to focus on the flames of the fire.

This week I have needed an “open his eyes” moment from God…a reminder that He is indeed at work and I am not alone in this daily fight. This is a truth that has never changed, but one I tend to forget what I am focused on my own inept abilities.

Tonight I am thankful for the army that I can’t see, and the God that has dispatched them. What a merciful and loving God He is to continue to rescue us again and again when we continue to fail.

Blessings,

Leah