Where we live in Tennessee we don’t often get snow, but when we do it shuts this area down for a bit. We don’t have the salt trucks and snow plows that the North has and the differing altitudes means that even when the snow melts in the valley many are still snowed in right up the mountain. Jake has been off from school for 7 straight school days!

The boys loved playing in the snow, especially Malachi! His smiles were absolutely amazing. He is absolutely a thrill seeker so going down those steep hills in a tube made him burst with joy.

After 11 days on oxygen we were able to wean Malachi off and get back to an easier, normal routine (just in time for the snow). I think one of the best parts about getting him off of oxygen is getting to sleep in a bed again! When he is hooked to so many machines it is really difficult to relocate him from the living room. His oxygen concentrator, pulse ox machine, and breathing treatment machines (every 4 hours) all require to be plugged in. And transferring him safely and then moving all the machines to a separate room just doesn’t make sense. Malachi and I call it “camping out” and try to make it fun, but truthfully that first night back in a bed and not sleeping on the floor is glorious!

Malachi made it about a week before secondary crud started to develop in his lungs so we are now on day 5 of a round of antibiotics and back to “camping out” due to intestinal issues that need continuous addressing. This season of sickness and the long term secondary effects comes around every year; I am glad it came as early as it did so that we would have time to address it before his pre-ops and surgery next month.

We have spent a lot of family time together at home, playing games and making memories. Both boys are pretty competitive and their favorite games of choice right now is Mouse Trap and Old Maid.

We have also been working on crafts, making snowflakes to hang on the windows. I realized when I started posting that I have a ton of photos of Malachi…he has just been so happy lately and it brings my heart so much peace to see him comfortable and himself after being sick. I obviously love Levi with all my heart, even though I don’t have many photos of him this week.

A few nights ago Malachi and I were up late and he was indicating that he wanted to talk. I asked him what he would like to talk about and gave him a list and he quickly chose “surgery”. I asked him if he was scared and he immediately signed yes. I had to take a deep breath because the truth is that I am scared too.

I kept going with the questions, trying to isolate what part was making him nervous. It wasn’t the surgery itself, or going back with strangers, or spending the night in the hospital. I asked him if it was the pain and he signed yes.

I was actually thankful for that answer because it is one we can control and one we can create a plan for. I explained that his body is really good at communicating when he is in pain and his heart rate will tell us when he needs better pain meds. I assured him that I will be watching him closely and will be his voice for him, making sure that he gets really good pain meds. I also explained that staying on pain meds longer than other kids will keep us in the hospital longer but that is totally okay with me. We talked for a few minutes and I asked him again if he was still nervous and he signed no, content with the answers.

But the truth of the matter is that I am still very, very anxious. Malachi’s body has changed so much in the last year. It has contorted in ways that are hard to look at and I am in a reality check of recognizing that surgery is hard, but doing nothing is going to end his life. The amount of pressure that his spine position is starting to put on his lungs has to be so scary for him. I spoke with someone a few weeks ago that had significant scoliosis as a teenager and she shared that she has vivid memories of her being scared and not being able to take a full breath.

I know that surgery has to happen. And I know alllllll the Biblical truths that you are probably cycling around in your head right now as they also cycle through mine. But sometimes when you are facing the Red Sea you get distracted from Truth.

I read an Elisabeth Elliot quote this week that made me think long and hard.

“Fear arises when we imagine everything depends on us.”

There a lot of things in Malachi’s life that depend on me and my abilities to take care of him. There are a lot of things I can control, like medication schedules, appointments, and calorie counts. But when these things arise that I can’t control or fix for him I can physically feel the fear creep into my heart.

I have to keep reminding myself that while I am a very significant person in Malachi’s life, I do not hold his timeline in my hands. I did not determine his first breath, and I will not determine his last. Because I do not know the bigger picture of God’s plan in Malachi’s life.

Not everything depends on me.

I am called to steward my opportunity to be Malachi’s mom, working with all my heart as working for the Lord (Colossians 3:23). And have complete and total faith that God is doing a VERY sufficient job carrying out the plans He has for my amazing son.

Psalm 19:14 “Let the words of my mouth, and the meditation of my heart, be acceptable in thy sight, O Lord, my strength, and my redeemer.”

This right here is my personal prayer right now. That the things my heart meditates on will be the truths in God’s Word and not overtaken by fear.

Please continue to pray health and discernment over our family. Thank you for being a listening ear as I process my thoughts, faith, and heart.

Leah

Christmas Day was delightfully uneventful for our family. I have been working hard to be present rather than focus on getting photos so I don’t have many from the day! But let’s take a moment to smile at this photo from Malachi’s first Christmas in 2013. For perspective, he was born in February of that year so he was 10 months old in this photo, but the size of a much smaller baby since he was born so prematurely.

For Levi’s big gift he got a home office to do all of his creating. I know this seems like a pretty lame gift for a 7 year old but he was thrilled. He loves spending time at his desk writing cards for people and using his imagination. It is so fun to watch him!

Malachi got a portable tv/tablet on a stand that keeps it right at his level for his big gift.

And for both of the boys we got a new video game system called the Nex Playground that doesn’t require holding a remote. Your hands are the remote and boy have we had some fun with that one.

Our Christmas was a simple one…just the way we like it. We’ve spent our weeks off knocking out some puzzles and playing some intense family games.

Malachi was able to get his casts off but they then modified them to be worn as braces for the next month. We didn’t let him pick out his shoes quite yet but as soon as we get the all clear he will get the chance to do some shopping.

Jake and I have been thrilled at how well his feet look! We have never seen them in these “normal” positions. He was born with vertical talus where they were folded up onto his shins, so seeing them rest at 90 degrees is beautiful.

Malachi did end up getting a head cold from Levi and we are now on day 9 of oxygen support. We took a trip to the pulmonologist last week to check for pneumonia and at that point we were holding strong. But here we are nearly a week later and I am afraid we might be headed in that direction. We have been keeping him home and running his respiratory regiments every four hours to keep his lungs clear and camping out in the living room so he can stay hooked up to all of his machines. We used to be able to share the couch together but now he is just too big and looking like a teenager!

Levi has thoroughly enjoyed all of our family time together at home and he is disappointed that he has to go back to school in the morning. He has kept us laughing with all of his antics and funny new phrases. On the way back from Vanderbilt threw his hand in the air and frantically asked, “Raise you hand if you are about to pee your pants!!” Prompting a very quick bathroom stop haha.

With Jake home for the break I was able to put in some hours at the farm. Life as a caregiver/mom can be really overwhelming at times. Escaping every now and then to put my mind on something else has been refreshing. I even had the newest baby sloth, Dash, join me for a bit.

As we get closer and closer to Malachi’s big spine surgeries I am having to face a lot of rising anxiety in me. It has ignited anticipatory grief, doubt, and so many memories and fears. Each time I can feel my heartbeat quicken and I have to remind myself that Malachi’s timeline has already been established and directed by God.

Jake and I had a goal in 2024 to read through the entire Bible, using the Bible Recap as our reading plan. We accomplished that goal, but some days I felt conviction over what felt like I was racing through the scriptures instead of taking time to really absorb them as the daily readings were sometimes whole books of the Bible, particularly the New Testament. This year we have chosen a goal of really reading and studying through the entire New Testament and the book of Psalms.

But reading through the Bible in that way really re-opened my love and appreciation for the Word of God. What a treasure the Bible is for us!

Earlier this week I read a post that I had written four years ago and it was exactly the reminder that I needed that morning, so I thought I would share that with you again here.

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Even though I walk through the valley of the shadow of death I will fear no evil.

This has been a shadow of death week. I know that sounds dramatic, but in our medically complex world it doesn’t take long for mild to become life threatening. Our special children don’t follow flow charts, textbooks, or “usually…” Each time we loaded up to go see the doctors again I caught myself wondering if this would be the last car ride, the last photo, the last time he would see Levi.

Malachi and I are so connected, and if I allow myself to fear as we walk through the valley of the shadow of death so will he. So instead we spend our hardest nights talking about heaven. Truthfully, it is one of his favorite things to talk about.

This week we had lots and lots of heaven talks. We talk about who will run faster in heaven, daddy or Malachi. We talk about how Malachi will have to teach Levi how to climb the trees there. We talk about the walks and talks he and I will have there and how I can’t wait to hear his version of his life here on earth. We talk about him wrestling his buddy Johnny, who made it there before Malachi. We talk about how beautiful the angels will sing and how exciting it will be to praise God forever with them. We practice the songs together that the Bible tells us the angels sing in Revelation.

I tell him about the beauty of heaven and how lucky he will be on the day that God tells him it is time to be with Him there.

I don’t want him to ever fear the shadow of death….so I too am learning to reach for the rod and staff for comfort as we walk through that valley together.

This week that valley led to a clearing. But one day that path will take a different turn. I don’t know if I can ever truly prepare my heart for that day, but I know I can prepare Malachi’s heart.

I can teach him that God’s timing is perfect. I can teach him that God loves him and he is one of God’s most treasured creations. I can teach him that God has ordered his steps already and has chosen the day He will call him heavenward. I can teach him about how God placed him on this earth for a reason. I teach him, and oh how he listens with such excitement- eager for the day he gets to see God the Father face to face.

May we all embrace our valley of the shadow of death as gracefully as Malachi…choosing to see the beauty that awaits instead of focusing on the evil along the way.

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2 Timothy 1:6-7 says “For this reason I remind you to kindle afresh the gift of God which is in you through the laying on of my hands. For God has not given us a spirit of timidity, but of power and love and discipline.”

This year I am working on the discipline part, the sometimes painful refinement that leads to a greater dependency on Him.

Please continue to pray over our family, particularly that Malachi can stay healthy and strong enough for his upcoming surgeries.

Much love,

Leah