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