Let me kick off with this gem of a photo!

Levi is just two weeks away from his 6th birthday and already the emotions are brewing. So much pride, joy, and sorrow surround that day. God has been so good to help lighten the hard memories and create such beautiful new ones to focus on.

Levi’s early oxygen deprivation has led to multiple lifelong things he will have to deal with, one of them being his eyesight. He has had eye surgeries to correct what we can but has some irreversible damage to the cortical nerve.

Eye appointments have always been really hard for him as they are pretty invasive. We reached a point where they explained they wouldn’t be able to tell us more information until he was older and could have some special tests run. We decided to pause eye appointments for the last year and a half, hoping to reset the emotions that those appointments bring.

This week we went back the doctor was able to get a good look at his eyes. Both eyes have nerve damage that cannot be reversed or treated. The damage is done, and no prescription will help his vision issues. The left eye is more damaged than the right and we were given a prescription for a new set of glasses to help physically protect the eyes from accidental injury. This isn’t new information, but is something we are continuing to ask God to miraculously heal in him.

Levi was uncomfortable but managed his emotions really well during the appointment!

After our appointments I told the boys we could go on a breakfast date; when we go on “dates” I let them pay for the meal, swiping the card and signing the receipt. We drove over to Cracker Barrel and when we pulled into the parking lot Malachi just started giggling and couldn’t stop. His sweet excitement was precious.

Malachi’s seizures have calmed down slightly since our last post. He is still struggling at night but daytime has been markedly better, as is his breathing.

Our insurance battle is still pending. We got several calls from the state this week about our appeal and we are being assigned a judge and a court room slot to argue that he is medically complex enough to qualify. It is a confusing process and not worth getting into….and it has led to some emotional breakdowns from me.

Malachi is competitive, just like his momma and daddy, so the further we made it through the soccer tournament the more excited he was to be at each game. Our girls made it to the state sectionals game (top 16 in the state) and their season came to an end. We obviously wish they had made it further in the bracket but we are very proud of them.

Malachi is legally blind with just a few inches of peripheral vision; he hungers for his world to be narrated and I have been trying to make more of an effort to let him know what is going on around him. We went to the local middle school championship football game and I snapped a few photos of Malachi listening to the game narration. He loves knowing all the details!

Now that soccer has ended we enter a time of focused rest for our family. Each year we take the months of November and December to be intentional with our family time and experiences. Malachi and I have been sneaking in some adventures while Levi is at school, heading up to the mountains to spend time with God. I think that Octobers in Tennessee have to be one of my all time favorite things.

Levi went on his first school field trip for the year to our favorite farm. Watching him interact with his classmates is so much fun! I am always cautious about including other children in these posts without permission, which is why you always see photos of just my boys.

Over the last six weeks I have been going through a personal study called “Experiencing God”, studying specifically about what it means to be led by the Spirit of God (Romans 8:14) and knowing His voice.

I read through 1 Samuel last week and found a verse that my brain couldn’t move past. For context, a woman named Hannah pleaded with God for a child and promised God she would dedicate Him to the Lord’s service if He granted her request. God gave her a son whom she named Samuel and when he was weaned Hannah followed through with her promise to God.

Samuel was raised in the temple by the priest, Eli. He was surrounded by religious practices, even sleeping next to the Ark of the Covenant! But as I read through 1 Samuel 3:7 my mind started really processing my own walk with the Lord.

“Now Samuel did not yet know the Lord, nor had the word of the Lord yet been revealed to him.”

I thought about my walk with the Lord and flashed back to the first time I remember the Lord revealing Himself to me. I remember the feelings of being prompted by the Spirit and not understanding those emotions at the time. But as I have grown in my walk with God that same feeling has been one that I have grown to love and crave.

As I have reflected on my journey with God it has made me appreciate and love Him so much more. I can point to His preparation, His protection, and His refinement in my life- recognizing how He has been strengthening me for every hard step in this journey.

I am thankful for the opportunity to not just know there is a God, but to KNOW Him. What a gift we have been given.

Thank you for the prayers continually offered up for my family and the encouragement many of you offer. A very sweet body of believers in Ohio has been sending me notes of encouragement for the last few several weeks and being encouraged and strengthened by other sisters in Christ has been a balm to my weary soul. To each of those sweet letter writers, thank you!

Much love,

Leah

We have had some pretty exciting changes since my last update that I am excited to share with you!

First of all, no word yet from the insurance decision appeal. They have a full 90 days to make a determination so they have a few more weeks to decide.

But the most exciting change…we got a new (to us) handicap van! Our last van served us very well but the mileage was reaching a point that made our mechanic nervous, expecting big repairs to be in the near future. So we decided to sell the old van and find something with lower miles and a little more room for Malachi’s growing chairs.

This has been a significant burden on our hearts for the last several months as we tried to find a solution within our budget and timeline. A new handicap van right now is running for just under $80,000 which is absolutely not within reach. The added insurance struggles pushed this focus to the back-burner.

This van was a very real Ephesians 3:20 experience for us, “Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations.”

I am always delicate getting into the details of others generosity, but the way in which this van came about was immeasurably more than all we could ask or imagine. God has been so good to our family. This one has under 50,000 miles and should last us for a very long time.

On a side note, in case other special needs families are looking, we found a company outside of Atlanta called Purple Ribbon Mobility. It is a run by another special needs dad who converts vans for a very reasonable price.

This past week was fall break for Levi and Jake! Our very talented soccer team has continued with their winning season so most of the week was full of some nail biting soccer games and practices.

This week the girls will compete in the regional tournament, hoping to keep going and end up at the state tournament in two weeks.

We have had a healthy few weeks but the weather changes and full moons bring an increase of seizures and lung agitation. Malachi’s body has been so disregulated lately. Fall break was a much needed chance for Malachi and I to try to catch up on a little bit of sleep.

When Malachi is going through seizure cycles I always make sure I hold his hand while we sleep so if he seizes I will wake up and be able to re-position his head to prevent asphyxiation. Right now he is having anywhere from 2-8 seizures at night so we are really hoping his brain can adjust with these weather changes and settle back to his normal.

But in between the hard days, he has had some really happy ones!

Malachi loves going to soccer games and hearing alllll of the emotions!

Tonight we had a visit from a baby sugar glider. I picked this specific photo to share because you can see the seething jealousy on Malachi’s face. Of course Malachi got to hold it as well, actually much longer than Levi. But the brotherhood moments we are seeing are more and more frequent.

School has turned Levi into a social butterfly and watching him make his rounds at church makes me smile. He accidentally matched his buddy so of course we had to snap a picture.

When the weather changes we get to pull all of the seasonal clothing out of storage and it is one of his favorite things. Right now we are into open button down shirts and jeans, which means he likely saw a teenager at church wear their shirt just like this.

Levi loves to mimic the things he sees the big kids do. He has been running around the house doing the “Church Clap” dance all week. I mashed together a little video for your entertainment.

And while we are on the topic of videos, here is a sweet Malachi worship video. Hearing his worship always warms my heart.

I have been dealing with some very long nights lately so I have had a lot of time to sit in my thoughts. Our thoughts often mirror our current emotional state, so I have been riding the rollercoaster.

But it has also given me time to be in the Word and let it saturate and refine me. The Holy Spirit has been very actively working in me on many things and I am HUNGRY for the Word of God and His direction in my life.

One of the chunks of scripture I have been focusing on this week is 1 Thessalonians 5:12-28 which talks about Christian conduct. Oooh there are so many good reminders in there, like verse 14:

“We urge you, brethren, admonish the unruly, encourage the faint hearted, help the weak, be patient with everyone.”

When I read that my brain quickly jumps to people that I could fit in each category; people I should be more patient with, people I should be encouraging, etc.

But then I had the realization that there are times that we are called to pursue relationships with a single person that require all four of these actions from me. Admonishment, encouragement, help, patience.

And come to think of it, there are many times that I require all four of those things from someone else!

Further down in that same chapter in verse 19 there are 5 words that keep playing in my mind.

“Do not quench the Spirit.”

I have been spending some time talking to God this week about the ways I intentionally and inadvertently quench the Spirit’s promptings. I think about the many times the nudges of God ask more of me than I am willing to give in that moment.

Oh, how I long for the Holy Spirit within me to become a raging bonfire. But when the flames make me uncomfortable I toss some water on them to keep me feeling comfortable and in control.

The Bible never talks about a walk with the Lord being comfortable and controlled by us. Nowhere does it talk about us harnessing the Holy Spirit and putting a set of reigns around it’s neck and a bit in it’s mouth.

These thoughts have continued to lead me to the same question…

Who am I truly living for?

So I am going to toss that question out of my heart and at you all this evening. Who are you living for?

Please continue to pray for health over our family, especially as the seasonal changes affect Malachi. Pray over Levi’s little brain as well, that his epilepsy remains controlled and his breathing stays safe. Please continue to pray for our faith to be strengthened amidst many unknowns right now.

Much love,

Leah

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