Our Levi is officially 8 years old!

And what a joy he is to our family. Levi is thoughtful, full of empathy, and whitty. His sense of humor is something special and I could fill a book with the funny things he says each day. His memory is astounding and he doesn’t miss a thing as far as details go. He has a way of making others feel remembered and important. God has gifted him in so many beautiful ways!

We celebrated with treats at school, a nice dinner out, and a party at the house with his friends.

This was the first year that Malachi exhibited a bit of jealousy towards Levi’s special day. At dinner one night as we talked through party plans he tried his very best to knock over Levi’s drink with his hand in a very deliberate way. Seeing those glimpses of normal brotherly love and loathe has been beautifully filling.

As always, Levi’s birthday was a mix of emotions for me…overwhelming thankfulness and overwhelming trauma emotions as I flashed back to that season of our lives.

There is a saying, “What the mind forgets, the body remembers”. As the years go by and the gap between traumatic events grows I like to think I have overcome some of those raw emotions. But such minor things can spark those memories and the emotions that they carried in an instant. For example….

Malachi had the opportunity to run his first half marathon with Addie Ray Racing and the Chick-fil-a mom from our story from 2017! He was very excited and anxious leading up to the morning of and didn’t sleep very well leading up to the race. We had to be up by 3:45am for the race and hit the road to arrive on time. Levi and Jake stayed home for this one and Malachi and I loaded up quietly in the dark to make the hour drive to the race.

As we drove down the dark road towards the highways I felt this uncomfortable yet known feeling deep in my belly and I couldn’t immediately figure out why. But the closer to Chattanooga we drove the more aggressive those emotions deep within began to stir. I finally pieced it together that those dark, middle of the night drives to Chattanooga are often done in late night trips to the emergency room or surgeries. I had to keep reassuring myself that we were going to do something FUN, and it was a surprising amount of work to get my mind to believe me.

We arrived at the race and transferred Malachi to his special racing chair. Malachi started the race and I found myself pushing around his empty wheelchair- another unknown trigger for me apparently. I immediately was overcome with a sick feeling, flashing back to the only other time we push an empty chair…surgery days. It was almost like I had transported to Vanderbilt in my mind and the same emotions that gurgle within me on surgery days began to appear.

My body remembers.

But in spite of my brain’s attempts to sabotage the special day, we pushed through and created some pretty amazing moments for Malachi. He completed the 13.1 mile race in 2 hours and 18 minutes with three runners helping him! He slept through the first portion but came alive in the final few miles and loved hearing everyone shout and cheer for him as he crossed the finished line, a moment that made me tear up with such happy emotions seeing a group so readily celebrate my son.

He got a HUGE medal which he is proudly showing off to anyone who will listen. He signed that he would like to do another half marathon so we will be looking at doing more of these in the future.

After the race we spent some time at the farm playing with the new baby zebra and monkey.

The animals at the farm are genuinely special creatures and are so kind to Malachi. The zebra rested his little head on sleepy Malachi’s legs.

This is one of my favorite photos from the last two weeks. I was giving Malachi a bolus feed and the Joy (the monkey) was absolutely fascinated, acting like I had just done a magic trick as gravity took the milk down into his belly.

Medically speaking, our November is pretty mild but December is WILD! We already have over 15 appointments and 1 procedure on the books for next month. We will be making trips to Chattanooga and Vanderbilt to speak with various surgeons and I suspect we will be having some hard conversations about more procedures. In the meantime we are basking in the glow of quiet and calm.

Malachi’s brain has had a bit of trouble with the seasons change, leading to very unpredictable sleep and seizure increases- often aligning with full moons.

As I mentioned before, birthdays in our home are always a bit emotional. I often feel like a crazy person, getting emotional over the sad memories and then getting even more emotional about the praiseworthy things. Driving home from school last week Levi rolled down his window and shouted to a friend in the parking lot. The power in his voice was such a vivid reminder of the many miracles we have been given, and tears of thankfulness flowed.

I read something last week and had to read it again and again, feeling the Holy Spirit as I read it. I thought tonight I would share it with you all.

The Classroom of Affliction by Sarah Trent

Affliction never teaches us gently.
It doesn’t whisper its lessons like a kind tutor.
No, affliction storms in uninvited, slamming doors behind it, rearranging the whole house of my soul without asking permission. It teaches deeply, carving its truths straight into bone, into memory, into places I didn’t know could ache.
I am learning things I never wanted to know.
Things I would’ve gladly lived my whole life without understanding.
But here I am, a reluctant student, seated at the feet of sorrow? and somehow it is shaping me.

Affliction does not lecture; it chisels.
It takes the dull places in me and strikes until sparks fly.
It exposes the idols I didn’t know I held.
It forces my clenched fists open.
It pulls up the broken roots I buried deep and hoped no one would ever see.
It teaches in ways that feel like loss, like loneliness,
like waiting in the dark for a dawn that hasn’t shown itself in months.
And yet…somewhere underneath this weight, something holy is happening.

I can’t deny it, the Word feels sharper here, more alive. Prayer feels less like a discipline and more like breathing.
Weakness feels less like failure and more like honesty.
And the presence of the Lord…
it is different in the valley.
He walks closer when the ground drops out beneath me.
He whispers louder when every other voice grows silent.

Affliction never teaches me gently,
but God does not abandon me to its harshness.
He takes its sharp edges and uses them to carve out the parts of me that were never going to hold eternity anyway.
He lets suffering go only as far as redemption requires.
Only as deep as transformation needs.
Only as long as it takes for my heart to learn what comfort could not teach on its own.
I am bruised—but I am not destroyed.
I am wounded—but I am being healed in places I didn’t even know were broken.
I am taught by pain—but held by mercy.

Maybe that’s the mystery:
affliction teaches deeply,
but God restores deeper still.
And someday, when the lesson has finished its painful work,
when the valley finally gives way to the mountaintop,
when my tears have watered something unexpected and holy, I will see that this, too, was a classroom of grace.
Not gentle.
But deeply, undeniably sacred.

Our classrooms of affliction give us an opportunity to experience the goodness of God in a magnificent way. There are days the humanity in me hates the affliction; but the refinement that is taking place is something I am working hard to embrace.

We hope you each have a wonderful Thanksgiving and thank you for checking in on our family.

Blessings,

Leah

The leaves are changing here in Tennessee and I find myself thanking God multiple times a day for the beauty of Octobers.

Our soccer season has ended, and our family takes a brief break each year from soccer seasons until January. We have re-started our family game nights, cooking more meals, and a new book series with the boys at night. Our family truly enjoys coaching soccer, but slowing down is always a gift.

Malachi had some pretty big appointments last week. We were able to have a productive conversation with his Urologist and come up with a plan for his urinary retention issues since the medications are not working.

In the next few weeks he will head to the operating room to start Botox injections in the urethral sphincter, the muscle that controls the release of urine from the bladder. He will have to repeat this procedure under general anesthesia every 3-6 months indefinitely.

Jake and I are honestly a little discouraged by this treatment plan. We have always avoided treatment plans that require him going under every few months. But doing nothing will lead to kidney failure so we are walking forward in faith and hoping this works. If it does not we will need to start considering catheterizations which can come with complications and lifestyle changes for Malachi.

We ended up canceling his MRI as his seizures leveled out when his body adjusted to the new medications. There seemed to be a little miscommunication between Neurosurgery and Neurology regarding the type of imaging and whether or not the machine was safe with his new back hardware. I was a bit anxious with all the back and forth and felt like we were stable enough to cancel it.

I meet with the Psychologist who tested Levi in the morning to discuss his results and I am very curious what she will have to share. Labels and diagnoses don’t bother our family. Each of our children are a puzzle and each time we get another piece it helps us organize the best path for them.

Levi is thriving in school and his history and science recall is so impressive! He is a hard worker and we are so proud of how well he is learning to love others.

The monkeys absolutely love him- we suspect they see him as one of them and play with him like he is a blonde headed monkey.

And Malachi is very entertained by all the monkey madness.

Each year our friend open their farm to the community for their annual “Holy Ghost Wiener Roast”. This event, all food, and all activities are offered for free and we partner with a local church to help bring the Gospel to the forefront of the event. The first year we just invited our youth group and had about 75 teens. The next year we asked the youth to bring friends and family and had 300 come out. The third year we opened it up to the community and our numbers have continued to grow each year. Last Saturday we had over 1,750 people on the farm!! So wild and so much fun!

This weekend the time changed. This can be a little tricky for medically complex families as we lean heavily on routines and medication schedules. There is a little wiggle room with med administration by an hour or so but we try to keep things as smooth as possible when the clocks change.

Today as I went through our routine I caught myself wondering if other parents have to be as time aware as we are.

While each day is very different than the last, here are the constants we have to keep track of on a healthy day….this may be absolutely boring to you but it gives you a glimpse into our medical world.

8:00am Levi medications round #1

8:15am Diaper Change #1

8:30am Malachi medications round #1 with g-tube feed

9:00am Malachi breathing treatment

9:15am Malachi Airway Clearance System CPT Vest

9:30am Cough Assist Machine

(Above breathing regiment is repeated up to 3x per day when needed)

10:30am Malachi medications round #2

11:15am Diaper Change #2; g-tube feed

3:15pm Diaper Change #3; g-tube feed

7:15 Diaper Change #4

8:00pm Levi medications #2

8:30pm Malachi medications round #3; g-tube feed

9:30pm Hook up and start Levi’s g-tube nighttime feed

10:30pm Malachi medications round #4

11:15pm Diaper Change #5; g-tube feed

11:30pm Stop and unhook Levi’s g-tube nighttime feed

In addition to this, we give Malachi water through his g-tube at least 4 times a day and vent him dozens of times, letting any trapped air out of his belly.

Levi sleeps from 9p-7a and Malachi varies but right now he sleeps from 2a-8a. Each day tends to float into the next and the mental energy it takes to stay on schedule can be overwhelming. Especially on appointment days when we don’t have our home base to work out of. Leaving the house requires significant planning and thinking through worst case scenarios. And traveling overnight anywhere….whew….it is a whole lot of packing and planning.

But for us, this has become normal and just a part of life. I feel like I could draw up meds correctly with my eyes shut haha! Right now I administer 23 different doses of medications each day- cleaning the syringes is it’s own job.

This life definitely doesn’t match the visions of motherhood I had as a girl, but it does carry so much beauty in it.

This weekend we had the opportunity to speak to a local youth group, and as I prepared for what the Lord wanted me to share it reignited such a love I have for sharing our story and God’s role in it to others. We aren’t perfect and we most definitely have not displayed God’s character in every chapter of our story, but the lessons we have learned in each leg of the journey have been so life changing.

As I prayed about what to share with these teens specifically I started digging deep into my past, asking myself what is something teenager Leah needed to hear at that age. And comically enough, it is the same thing adult Leah sometimes needs to hear these days.

I saw an object lesson at a women’s conference that really stuck with me that involved paint samples. The more I thought about the visual the more it resonated with me.

This weekend I had 5 teens come up front and handed each of them a paint sample from the hardware store. They had to secretly look at their sample and decide what color it was; on the count of three each person had to say their color out loud. What they didn’t know was that every sample was white, and even had the word “white” in its name.

As you can see, every single one is a different “shade” of white.

I talked about faith and how, too often, we look to other Christians to determine what faith looks like. We find people in our world that we admire and use them as our standard of Christ. But even the greatest Christian is still an imperfect version of the perfect nature of God. The “Ultra White” sample represents God’s perfect holiness….and a visual of how far off even our best imitations can be.

It isn’t wrong to admire others, but it is important that we KNOW the true God and His character firsthand.

In my life my biggest wounds have come from other sisters-in-Christ. And I am sure that I have been a source of pain for others, as we all have moments where we allow our sin nature to overshadow our reflection of Him. When we do things “in the name of Christ” and allow our flesh to be involved we can do so much damage to our witness.

It is vital that we be “washed in the Word” (Ephesians 5:26) and have eyes that can spot when our feet need to be cleaned (John 13:5-10).

It is always a blessing getting the chance to share with groups. And the opportunity for self-reflection with the Holy Spirit is always a refining experience.

Well, according to my handy schedule typed above, it is time for me to get Malachi to bed! Thank you for listening to my updates and allowing me to ramble. Having a safe space to process and unload my brain is something I do not take for granted, and I am thankful that we have a support system that cares enough to check in on our family.

Sincerely,

Leah