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