Malachi and I are currently snuggled up in the living room, sharing an electric blanket (one of his favorite things) and watching a new movie. We aren’t sleeping a lot these days but he and I have both been enjoying the extra late night time together.

He just finished another round of sickness, requiring oxygen again for about a week. There were just a few days between the two rounds of illnesses for him and it served as a reminder of how fragile his lungs are. He has several lung specific diagnoses- Chronic Lung Disease, Bronchiectasis, Bronchomalacia, and Tracheomalachia. His little lungs have been through a whole lot in his lifetime.

We had signs of a big winter storm heading our way and Malachi was still requiring several liters of oxygen and continuous monitoring on his pulse ox machine. He also needed his respiratory regiment every 4 hours, which includes machines that require being plugged in. As the storm timeline got closer the more anxious I started to get thinking through our preparedness without power. We have a small generator for emergencies, but I was overjoyed when Malachi perked up and we were able to wean him off.

Looking into the future I suspect we are going to need to establish a better plan for emergencies, especially if Malachi’s health requires him to be more dependent on machines (trach, etc) When we built our home the man that did the electric had a grandson very similar to Malachi and prepped his bedroom for it to be able to be on it’s own fuse/circuit. I am typing this like I understand what all of that means, but I assure you I don’t haha! But from what I understand we will be able to set up his bedroom to be on a generator in the future.

The winter storm shifted and we went from snow excitement to being drenched in a very cold rain. We have been enjoying some quality family time and playing lots and lots of games.

We snuck out this afternoon in the rain to take Jake to dinner for his birthday. The birthday talk has Malachi all hyped up thinking about his in just a few weeks. He will 13 years old and we are planning a few fun adventures for him.

It is likely just my imagination, but since Levi turned 8 years old I feel like his looks are changing! The other day we were sitting in the car and I glanced over and couldn’t get past how he is losing that baby face.

The amount of humorous things Levi says in a 24 hour span is quite entertaining. His vocabulary also makes things extra fun, describing mashed potatoes as “spectacular” and children’s church as “inspiring”. He has a really beautiful brain and watching him grow is such a gift.

He came home from church two weeks ago with a big smile; Malachi and I had stayed home due to his sickness. He cheerfully told me “Well mom, I have some great news. I am getting married tomorrow!” He explained how he had planned out the wedding at church and got all the details figured out except for “what people will do while we are taking photos between the ceremony and reception. Mom, I need your help with that.”

Oh boy.

We aren’t the type of family that promotes having girlfriends and such, so I told him that he could be friends with the girl but I didn’t want them talking about marriage. Levi threw his hands in the air, exasperatedly saying “MOM! You are ruining my chance at happiness!”

I read something this weekend that I was able to relate with right now about the pause “between the ashes and the crown”. Tonight I want to share this author’s words with you and hope they encourage you as well.

Living in the Selah buy Sarah Trent

I am living in the “Selah.”
The sacred space between the cry and the comfort. The hollow pause between the groaning and the glory.
Between “Why, Lord?” and “Now I see.”
Between the ashes and the crown.

Selah…I used to rush past that word in the Psalms. Skimmed it like a speed bump on the way to something louder, clearer, resolved.
But now I know it’s more than a pause.
It is a dwelling place.
A deep exhale in the middle of unanswered prayers.
A quiet held between sobs and songs.

I am sitting here, in the ache that has not yet lifted, in the wound that has not yet healed,
in the prayer that still waits for its amen.
I am not where I was, but not yet where I long to be. I am in the middle…the Selah.

And I am learning this:
The pause is not empty.
The silence is not God’s absence.
It is His breath over the waters again.
It is the same voice that spoke in the beginning, not always with words, but with weight.
With presence.

Here, He teaches me to wait like the psalmists did, not with passive resignation, but with hope.
Selah does not mean the story is over.
It means: Stop. Ponder. Let the weight of what was just said sink into your bones.
It means: Don’t miss this moment.
It means: God is still speaking, even in the stillness.

This is the space between grief and healing.
Between brokenness and breakthrough.
Between Good Friday and Resurrection Morning.
I thought healing would feel like a moment, a flash of divine power.
But what if healing looks more like dwelling in the pause?
Like learning to trust the Surgeon while He’s still stitching the wound closed?

Selah: the ground is still wet with my tears,
but the roots are reaching deeper.
Selah: I am not whole, but I am being held.
Selah: I don’t have answers, but I know the Answerer is near.

I used to beg for the fast-forward button.
Now I just pray not to miss Him in the slow unfolding.
Not to miss the revelation in the space between.

So I sit. I breathe. I ache. I hope.
And I whisper that word with trembling lips—
Selah.

Sincerely,

Leah

After a long few weeks, we were finally able to wean Malachi off of oxygen! He is still not to his baseline quite yet but we are close.

Malachi has been keeping us on our toes lately, and the day trip to Vanderbilt to see his surgeons was no exception. I had the timeline all planned out for the day and when I went to load him up I could tell he was working a bit harder than normal to breathe. I checked his oxygen levels as I wheeled him to the car and he was in the low 80s. So I ran back in and grabbed enough tanks and supplies to get us to Vanderbilt and back, a six hour round trip drive plus the time needed for appointments. I also grabbed the portable concentrator which I thought was fully charged and ready for action.

It wasn’t until we arrived that I noticed the portable concentrator was down to half battery life and I did not have the charger. It felt like a race against time as we waited for the surgeons and watched the screen anxiously. It literally started beeping on empty as I made it to the parking garage after our appointment…just in time to reconnect to the large tanks I had in the car.

Take a look at this tall boy stretched out on the exam table!

We spoke with the spine surgeon first and he said that Malachi is fully fused, meaning his bone has healed onto itself and the hardware is no longer necessary. But unless we have a reason to remove it he will keep that for life. We also talked about the floating rib that suddenly popped up on his side; he said we could surgically remove this if it becomes a concern for skin breakdown but for now it is best to leave it. The thought is that some of the muscles holding it down were cut when they entered his side cavity to get to the spine.

Next we met with his hip surgeon. He is phenomenal and took the time to talk to Malachi and give him time to respond. Malachi indicated that there was pain on his left hip and signed that he was ready for surgery. I was very, very proud of him for trusting the doctor enough to sign directly to him. And so grateful for a doctor who will listen.

We have scheduled Malachi’s first hip surgery for June. It is possible that he will only need to have the one hip operated on, but also a good chance we will need to fix the other side as well. For mobile children they will reconstruct the hip, securing it back into place. But for Malachi he is fully dislocated so they will be removing the portion of the bone that is sticking out of his side. This will shorten his leg significantly, but should immediately eliminate any pressure sore concerns or pain from laying on the protruding bone as he is now. I cringe even typing these details as it all sounds painful.

Recovery should take about a month with just a few nights in the hospital. But we all know how the Carrolls like to make things interesting so we will ride that wave when it comes.

Levi had his big eye doctor appointment last week, or I guess I should make that plural as he actually had two.

These appointment involve a lot of miserable moments for him and we did our best to keep a good attitude.

They are also hard for him from an academic standpoint as he has a hard time with letters due to dyslexia. So when they are having him read a chart he bombs it, but not always due to eyesight issues. I always ask them to try it again using the photos for little kids but he still struggles.

The tests they needed to perform this time require him to sit very still and focus his eyes. He had a hard time with them, and his patience as well as the patience of the nurses started to quickly dwindle. He later told the eye doctor that “the nurse was a bit too pushy”. We were not able to complete the needed tests again this time around and had to call an end to it after he had reached his max.

The boys have been having fun with their Christmas presents still. We have been having some Nerf gun competitions, much to Malachi’s delight.

Malachi also saw the Urologist and unfortunately it seems the Botox injections did not fix his urinary issues. This is pretty discouraging news, as the alternative treatments are less than ideal (intermittent catheterization to get the urine out). The doctor seems to think that his bladder forgot its job and is no longer contracting at all. We will go back in about a month for one more test to check the muscle activity before we explore another route.

We have been hopping these last few weeks with an incredible amount of appointments, trying our best to take advantage of the winter break to avoid the boys missing school. Every time we clear an appointment off the calendar it gets replaced by a follow up one and never truly gets checked off of our minds.

The boys have been reading a book series called “Secret of the Scrolls” at night as part of our family devotions and we have made our way to the ones that talk a lot about Jesus’ time on earth. The books are a lot like Magic Treehouse books if you are familiar with those, and present a brother and sister who get sent into Bible times, each book with them entering a different Bible story.

Last week we read a chapter about the young boy getting hurt and him going to Jesus to ask him to heal it. As I read the story I could tell that both Levi and Malachi were on the edge of their seats listening to the interaction. And the more I read the emotion in the room grew thicker.

“Can you please heal the cut on my leg?“ asked Peter.

Jesus bent down and looked deep into Peter’s eyes. “Do you believe in me?”

“Yes,” said Peter. “I believe!”

Jesus laid his hand on Peter’s head. Peter felt something warm flow from the top of his head and down through his body like a wave of love and energy. He felt a tingle in his leg, and the pain went away.

“Take off the bandage,” said Jesus.

Peter peeled off the bandage. The cut was healed! The only thing left was a small scar.

“I left the scar so you will remember,” said Jesus.

“Don’t worry,” said Peter. “I will never forget.”

I closed the book for the night and looked at Levi who had unknowingly brought his hand up to the scar on his neck. I could tell that what I had just read had spoken to his soul, and brought clarity to his little heart. His eyes filled with tears as we talked about all of the scars on their bodies from surgeries, and how they told a beautiful story about what God had done in their lives.

As Levi let tears roll down his cheeks I saw him smile as I told him that those scars were proof of God’s miracles in his life. And he and Malachi must be pretty special to get THAT many miracles from God.

Our scars tell a story. They can tell a story of suffering, of pain, of great heartache. But they can also tell a story of a loving God, who was faithfully beside us along the way and working in ways we cannot see.

Blessings,

Leah