Malachi is currently caught in a seizure cycle as I try to type this so please excuse any disjointed thoughts!

It feels like my last update was a long time ago, as we have packed a lot into the last two weeks. We are in a sleeping season with Malachi where the days and nights blur together so it is sometimes hard to keep track of the days.

I am increasingly thankful that we have been able to find a school environment that is good for Levi. When Malachi is in a cycle that keeps him up at night it has been helpful to be able to drop Levi off and rest with Malachi, regaining a bit of mental clarity and strength.

I would venture to say that the sleep struggle is one of the hardest parts for any medically complex family. It takes about 3 hours to get Malachi officially asleep. But in that process he drifts into sleep 4-5 times and a seizure wakes him back up within 15 minutes. So it is a cycle of thinking I successfully got him to bed and then being proven wrong multiple times. It is a psychological battle for me and is something I have head to really lean into God with. Malachi’s seizures need physical intervention to keep him safe so I have to pick him up out of the bed and start the process over again each time.

Levi is progressing well in school and working hard on learning letters and their sounds as well as number recognition. When he is at home we continue to work on these things, creating trivia games throughout the day. Malachi has been jealous of the attention Levi is getting so we have also been quizzing him on the numbers and letters as well and (not surprisingly) he is doing amazing! Malachi is such a smart kid.

Malachi is homeschooled and we have enrolled in a special needs homeschool program with the state. Through this program we are able to get the funding each year that the local school system would get for Malachi and we can use this funding on education related expenses. They are extremely strict with what you can spend the funding on, but it has been a great option for our family with his needs not really fitting into the hours of a standard school day.

With this funding I have been able to order a variety of manipulative and materials for Malachi’s learning styles. We ordered some touch math cards for him that have dots on the numbers for counting- so the “5” card has 5 dots along the number, the “2” card has 2 dots, etc. I run Malachi’s hand over the card and he counts the number of dots (we don’t count aloud) along the number and then chooses the correct one from a multiple choice list with his signs. It is genuinely impressive and he is so proud. I may try to get a video for you soon.

Malachi is blind with the exception of a few inches of periphery vision, so I have ordered some braille learning materials to see if he would enjoy the challenge. I think it would be amazing to be able to teach Malachi to read.

We have been working hard with the Tennessee Justice Center to appeal Malachi’s denial from TennCare and we are still waiting to hear back from them with a final determination. They have up to 90 days to make a ruling on the appeals so we are continuing to pray that God will intervene on our behalf. I have spent countless hours gathering medical documentation that we have sent in to prove his medical complexities, which seems like a frivolous move since they currently receive copies of all of his bills.

When Levi was a baby he was so shy, especially around the teenagers in our youth group. If they looked at him, or even said his name, he would burst into tears. But to see him now you would never know it. He LIVES for the many events that he gets to be around the teens. He has become their mascot of sorts. In fact, this past year Levi was in the local high school yearbook more than most students, which is hilarious to me. The kids love taking selfies with him and he loves the notoriety.

We have been busy with the teenagers! Friday night for the 5th quarter we fed nearly 100 teenagers tacos. Jake hauled our Blackstone to the church and cooked 12 pounds of beef at 10pm. Ahh to be a kid again. I always get a laugh out of the faces of the grocery store workers when we checkout with enormous amounts of food.

Earlier this week we had a stretch with no soccer games scheduled so we took the girls on a team building hike to a local waterfall. Jake stayed with the kids at home and I was genuinely excited to get out in nature again. Hiking was one of our passions before having children and it just felt so freeing to walk through the woods.

What I wasn’t expecting on the hike was to be hit with dozens of flashbacks. This was a hike that Jake and I have done often and at different points in the trail and at the falls memories popped into my head of young, carefree Jake and Leah with two silly dogs hiking to the falls through a foot of snow. And Jake and Leah standing under the waterfall to cool off on a hot summer day.

The human brain continues to amaze me, specifically with its ability to retain so many detailed memories.

Malachi has been melting my heart lately. Earlier today in Sunday School we were wrapping up class and closed in prayer. Malachi and I hold hands as often as possible when we pray but this time for some reason I didn’t. In the middle of the prayer I felt his little hand on my shoulder, resting it there so I would hold it. The amount of focus and energy it took to get his hand that intentionally high is such an act of love to me.

These tiny little moments mean so much to me and remind me of how blessed I truly am. What a blessing Malachi is in my life.

I have been in a season of seeking with God, craving His Word and letting it wash over me. I have been praying for fresh eyes to see others the way He sees them and reflecting with the Spirit’s help on things that need to change in my life.

There are so many areas of my life that I can’t control. But dwelling in the Word and connecting with God is something I can absolutely prioritize and “control” (for some reason that feels like the wrong word choice here).

I read a statement on a t-shirt last week and it’s simple truth really caught my eye.

Can’t throw stones while washing feet.

In John 13 we read about Jesus with his disciples at the last supper before his arrest. Jesus bends down and begins washing the feet of the disciples, an act that was uncharacteristic of a king.

John 13:14-16 Now that I, your Lord and Teacher, have washed your feet, you also should wash one another’s feet. I have set you an example that you should do as I have done for you. Very truly I tell you, no servant is greater than his master, nor is a messenger greater than the one who sent him.

This led me down the path of really evaluating how willing I am to bend down and wash the feet of others in my circles. I am truly able to clothe myself with the humility of Christ and serve others? Or do I get clouded by my own fleshly thoughts about their worthiness?

It is easy for me to wash the feet of my sons. And my husband. And my closest friends and family.

But what about the people that don’t love me back? Am I willing to put my pride aside the way Christ did? Or are my hands too busy holding stones to be able to follow His example.

We aren’t called to throw stones. But we are called to love the Lord your God with all of your heart, soul, mind, and strength and to love your neighbor as yourself (Matthew 22, Mark 12, Luke 10).

When we focus on these two simple commandments our hands will loosen their grip around those stones and will be guided by God to the wash basin.

Much love,

Leah