Some weeks I sit down to type the blog and realize that I don’t have many life photos to share. But this week that is definitely NOT the case! We have had several big moments from over the last two weeks I am excited to share with you.

Last weekend our area had a winter storm, leaving some beautiful white snow to play in. This is one of those special needs parenting things that is very hard for me. Levi is capable of gearing up and playing the snow for several hours, but Malachi can’t handle the colder temperatures for long and his mobility is limited without the use of assistive devices. I want SO BADLY to give him the same experiences we give Levi, but the older he gets and the larger her gets safety becomes a factor.

Both boys woke up excited to see the snow and we did the absolute best we could to give Malachi a fun day in the snow. Levi and dad did some more intense sledding, but we just didn’t share that information with Malachi to avoid hurting his feelings. I put together a video of our adventure to share with you.

Snow in Tennessee makes life a little more complicated as it shuts things down for several days. The Saturday snow left Jake out of school until the following Friday! But we enjoyed the extra family time and fun.

Last week we kicked off the 5th year of our kid’s soccer league ministry. This year we have 130 players signed up, with 8 practices spread out over Mondays, Tuesdays, Thursdays each week and 8 games on Saturdays. It is absolutely exhausting, but such a beautiful opportunity to share Christ with the children.

We had the first game day yesterday and Levi scored a goal! Watching him run blesses me so much. He has come such a long way with his ankle/leg strength and his cerebral palsy. His breathing is still very loud when he plays, but it doesn’t stop him from giving his best. And Malachi LOVES to help coach. We left him on the court for the games with the non-violent littles and he had several balls bounce off his chair, much to his delight.

We try to find a creative way to present the gospel to the children each year, and this year I am trying a different route focused on Biblical truths versus lies of the world. Levi told me today “Mom, I am glad you are changing it up and not telling the same old stories about God.” I asked him to clarify and he said “You know…how Jesus was born, and died, and was raised from the dead….that same old story.” I am glad they are paying attention to the “same old story” haha! My prayer this year has been that we plant seeds of truth in their little hearts.

We had another monumental event this past week! Malachi turned 13 years old!

I can’t adequately explain how blessed I am to have Malachi as my son. He reflects so many Jesus qualities to the world! He has such a witty sense of humor and a contagious laugh. His smiles are authentic, so if you get one out of him you know it is very genuine. He feels big emotions and has been working so hard to communicate with others outside of his safety people. Malachi has to deal with many hard things, but he has the unique ability to see a rose amongst thorns and keep his eyes focused on the lovely things in life.

In an effort to continue to be transparent with you all, I struggled this year on Malachi’s birthday. My insides were a perfect example of grief and gratitude living side by side. The night Malachi was born our lives changed forever, and those memories and emotions create a physical reaction in my body as I flash back to hard conversations and near death experiences. I can remember each of them with such clarity, no matter how hard I try to forget.

I remember the moment his heart stopped beating inside of me.

I remember waking up from surgery and asking Jake if our son was alive. All he could do was nod yes and I knew not to ask more questions.

I remember a nurse coming in and letting me know he was not doing well. I still hadn’t been given the opportunity to meet him and was overwhelmed with grief that my son would pass away before I could even lay eyes on him.

I remember the first time I saw him- on the screen of a digital camera.

I remember the beeps. The smells. The victories. The losses. Each of them are like a scar on my heart, serving as reminders of one of my darkest days.

But it also carries the title of being one of the most amazing days of my life. Malachi made me a mother. He unlocked a world of love I had never known, and through him my faith grew clumsy, awkward legs and ran to the Father. Malachi’s birthday marks a new life for me. A life fully reliant on God, surrendering my son, my plans, my visions to God’s will.

I asked Malachi what he would like to take to school on his birthday and he decided on a popcorn bar for the entire school. We ordered some big bags and geared up for the fun day.

And when we got to school he suppressed all of his joy (like the teenager he is) and “played it cool” haha. I think he was annoyed that Jake and I stayed- we cramped his style.

After school we went bowling, opened some presents, and did a Crumbl cookie taste test (confetti cake cookie won Malachi’s vote). One of the presents we got him this year was several new communication switches. I know that sounds like a lame gift but they run $100-$300! And we have to order them without knowing if they are a good match for his abilities and just hope they work out.

We spent most of the evening playing with the location of the switches, trying them at his elbow, temple, chin, etc. We were finally able to settle on a good spot for 1 head switch and we have ordered an identical one for the other side. They plug into a 4 phrase recorder so we can give him access to activate 4 different words/phrases if we can figure out how to successfully get him using 4 different switches in 4 different places.

I took a video for you to see how he uses his new wobble switch.

This weekend we played Bible Guess Who and I would describe in detail the character he had picked (that the other team would try to guess)- what they were holding, wearing, looked like, etc. Malachi did amazing with his switch, answering YES when it was applicable. I was so amazed at how quickly he was answering Jake’s questions.

But even more amazing was Malachi guessing Jake’s character. At one point he had narrowed in down to 4 different characters- Noah, Moses, Judas Iscariot, and Joseph. Jake had guessed his character correctly so Malachi had one chance to make a guess. Jake graciously gave Malachi a hint, saying that his character was in the New Testament. Malachi IMMEDIATELY knew, clicking his switch for YES when Judas Iscariot was said in the list. Smart boy.

And yes, you may have noticed in that photo that we are not at our house. Part of Malachi’s birthday gift was a birthday adventure of staying the night in a covered wagon! Our sweet friends down the road at the farm let us stay the night in one of their wagons. We also said goodnight to the exotic animals in the barn before we settled in for the night.

We stayed up until midnight, eating pizza and playing board games. Malachi is incredibly competitive and had decided he wanted to beat dad in all the games. Before bed we cuddled up as a family and started a new book.

Both boys were excited about the adventure, but Levi was SO excited. He was wide-eyed when we walked in and turned to Malachi saying “Thank you Malachi for being born!”

What a gift Malachi is to the world.

To close tonight’s blog I would like to share a poem I wrote for Malachi when he was just a few years old as it reflects my momma heart.

It was a breathtaking day in heaven as the father summoned the Son.

He wanted to tell him firsthand about something wonderful he had done.
He took His commanding finger and pointed down at the earth.
Jesus looked and saw a young mother, seconds away from giving birth.
“Why, Father is she so frightened? Shouldn’t she be filled with joy?
Shouldn’t she be celebrating the birth of her baby boy?”
“She worries about his future” was the Lord’s simple reply.
“She doesn’t know my plans, and that the child will live and not die.
She doesn’t see the footprints that the small boy will leave in his time.
She doesn’t know that his purpose on earth is not for her glory but mine.
The boy has a job to do, as I will slowly start to show.
He is my mouthpiece,” said the Lord “And everywhere he treads I will go.
Some children I create for the joy of the world, but this one is different you see…
This one has been crafted to be distinct; he has been crafted to be used by me.”

Jesus nodded as he understood the truth in God’s mysterious ways.
He smiled as he remembered that it was his Father’s job to number the boy’s days.
They watched together as the boy entered the world and took his first desperate breath of air.
Then God chose his strongest warriors to be sent to watch over his care.
Every day the Father looks down with love at his uniquely crafted son.
And every day He is reminded again that he practiced perfection when he created this one.

What some may say is defined as “different” do not know the true meaning of the word.
But each time I gaze at you, my son, I see the flawlessly strong hand of the Lord.
You are different, you are beautiful, you are one of a kind.
You are strong, wise beyond your years, and you are a masterpiece from the Master’s mind.
How can I be sad, how can I lament this special, heaven sent gift?
All I can do it thank the Lord that His plan for you has me in it.

So share your story and live your life with joy, love, and grace.
And keep on smiling, my sweet Malachi, with a brightness that has seen God’s face.

Blessings,

Leah

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

As I sit down to write this post I find myself not really knowing what day or time it is….which is an accurate reflection of our world right now!

Here are some fun photos from the boy’s Christmas concert at their school. Malachi sang with the middle school/high school choir; I told him if he sang I would buy him a chocolate milkshake. And boy did he earn that shake! He was so excited and sang his heart out.

Levi did amazing as well, even performing several songs with the handbell choir. He was a ball of excitement and nervousness all day leading up to the concert. He rocked it!

Christmas creeps up each year and we always hold our breath, knowing that cold and flu are brewing around the community and people are out and about more often than normal. We wash hands, we take vitamins, and we avoid the germs as much as possible. But oftentimes that just isn’t enough with compromised immune systems.

Over the last two weeks we have passed around a cold that affected each of us differently. For Jake and I it was just 48 hours of sinus pressure and we were back to normal.

For Levi, when his airway swells he vomits often. It is just such a tight space back in his throat. So in addition to the regular sickness symptoms we also battle dehydration from all the vomiting. I am not able to run his nighttime g-tube feeds because he vomits more frequently when lying down. He is left hungry, cranky, and feeling bad.

Malachi has bronchiectasis, so bacteria gets trapped in his lungs and things turn bad relatively quickly. He actually takes a preventative antibiotic three days a week year round to try to keep his lung bacteria at bay. He started running a fever and thankfully we were able to snag a telemedicine appointment with his pulmonologist on Christmas Eve and start a new round of antibiotics. He had just finished a 7 day course for a UTI (found during his recent procedure) that was also supposed to cover the lungs as well. So the next antibiotic was prescribed for 10 days and is a “bazooka” for knocking out infections. Unfortunately that level of medicine comes with other side effects that keep us close to home and on our toes.

Malachi almost immediately required 3 liters of oxygen; 4 liters is our hospital marker so starting off that close to the max made me anxious. We have all the things at the house to run a standard hospital room so we went into sickness mode, running breathing treatments of albuterol and 7% saline every 4 hours. We also ran his CPT vest with each treatment and suctioned like crazy people to try to manage his secretions. It was such a blessing to have Jake home and have extra hands for the tasks and extra brain power to keep track of med schedules and routines.

Today was his first day off of oxygen and is getting stronger by the day. And he has been really, really happy this week. He wakes up smiling and goes to bed smiling. He has enjoyed all of the family time and having everyone at home all day every day.

We have filled the time with family game nights, movies, new books, and lots and lots of needed naps.

On Christmas the boys enjoyed opening their gifts. We still stick pretty close to the 4 gifts: 1 thing you want, 1 thing you need, 1 thing you wear, 1 thing you read. We also let them each pick out 1 big thing to get each other. This year Levi bought Malachi a switch adapted Nerf machine gun that Malachi can activate 100% by himself. And Malachi bought Levi a small go-cart style toy.

Tomorrow Malachi and I will head to Vanderbilt to meet with his spinal surgeon followed by his hips/feet surgeon. Jake will stay home with Levi as they have some local appointments to get to. Then on Friday I will head to the eye doctor with Levi to run some tests on his cortical nerve to see if we can measure the atrophy.

There are certain specialists I dread more than others. For some reason the eye doctor has always been a hard one for me, dealing with issues that he wasn’t born with but he acquired due to oxygen deprivation. It hits me different knowing that this could have been prevented. But Levi will mirror my emotions so I am working on being positive and enthusiastic haha!

I find my emotions a bit wavering about tomorrow’s Vanderbilt trip. I don’t think we will find any surprises with his spine, and I don’t think we will have any conversations we don’t see coming. But I am pretty sure his hips are ready for surgical intervention, which was are told by other parents is a more challenging recovery than the spine. It is really hard for me to wrap my head around that. There is such a hard balance of temporarily diminishing quality of life with the hopes it will create a longer quality of life down the road.

The love and admiration that burns inside of me for Malachi is indescribable. As he gets older the more in awe I am of his resiliency and heart. We talked this week about his hips and whether or not they hurt, and he signed that they do sometimes hurt, particularly at night. I sleep in a bed with Malachi right now and try to reposition his hips every few hours to try to alleviate any pain. But the pain still wakes him up at night.

Total side note here, but Jake and I had each other laughing this evening talking about nighttime Malachi. He doesn’t always have seizures while sleeping, but every one and then he will have a BIG one. When he has these he throws his arm over and “hooks” me around the face or neck and is unbelievably strong. I literally can’t get him loose. Imagine being completely asleep and then having an arm wrap around your neck very suddenly and squeeze tight enough to pull you towards him. Every time it happens I have to remind my brain that I am NOT being attacked by a stranger and stay calm until his 20-30 second seizure is complete.

Jake took a nap with Malachi this week and he did something similar to him, punching him ferociously in the eye socket during a seizure. It is terrifying in the moment yet a little bit laughable after the fact as your brain processes what just happened. He sure keeps us on our toes!

These last two weeks have been challenging, but they have also been beautiful. There were so many times I was overcome with the joy of the Lord, looking at our chaos and seeing such beautiful things growing within it. Watching Levi cultivate a servant’s heart as he naturally steps up to help Malachi. Seeing Malachi crack a smile through his discomfort and pain when he opened up a present we so desperately hoped would bring him joy.

And then there is Jake and I, and the gift of our friendship. There is so much isolation in our world. So many things prevent us from being able to commit to friendships and “show up” for others. But God knew the calling; He created and designed our relationship for the things He called us to.

As I reflect back on 2025 it has been a year of change for our family. We have re-framed life a bit and in the process lost several friendships, which has been very hard on all of us. In my wounded state I find myself fiercely protective of who I allow into our lives on that deeper level again; watching Malachi process rejection from people he loves has been devastating and I want to protect him from that hurt. I am sure there is a healthy balance but I haven’t quite found it and am still seeking the Lord on that one.

I don’t quite know why I felt led to share that this evening on here. But maybe some of you are also struggling with similar wounds and need to hear another sister-in-Christ acknowledge the wounding that the body of Christ can often do to one another. It is not of God, and does not mirror His heart for His people.

Lamentations 3:21-23 “Yet this I call to mind and therefore I have hope: Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.”

The faithfulness and love of God is not seasonal. His compassion for us is not something we are expected to earn. It is who He is.

And in our world full of unknowns and not yet, that hope in Christ continues to fuel me and remind me that there is more to this life than what I can easily see.

I am very, very tired and Malachi is having seizures so I need to wrap this up for the evening. But thank you for checking in on my family.

Sincerely,

Leah

We left off the last entry with Malachi’s cluster seizures and a trip to the Emergency Room. Just as quickly as they came on, they disappeared leaving us scratching our heads yet again.

We met with his epileptologist and we are working on some medication changes to help prevent these episodes; Malachi has been handling the med changes pretty well. We have also modified his emergency seizure plan to intervene after 3 minutes of consistent seizing, and carry “rescue” meds to administer.

Speaking of epilepsy, we are creeping up on the 4 year mark for the night Levi was diagnosed. I remember leaving the ER that night with him and taking him to church a few hours later for him to be Joseph in the nativity play. We live in such a weird world, where reality happens but we bookmark it and put our grief to the side to enjoy special moments. Thankfully his epilepsy has always been easier to manage than Malachi’s and his original seizure med that he takes twice a day is still working.

We re-entered hospital land on Friday for Malachi’s outpatient procedure. He went under general anesthesia for Botox injections in the sphincter muscle of his bladder. It takes 5 days to see if it was effective, but we are seeing small signs of progress.

Malachi handled surgery day like the superhero that he is, keeping a positive attitude and even smiling and signing to the nursing staff as they wheeled him to the operating room.

I had some wavering emotions surgery day as they vastly overbooked the operating room. We checked in at 12:30 and they didn’t take him back until nearly 6:00 (his OR time was 2:45). Poor Malachi wasn’t allowed to have food past 7:30am and was starving by the time we made it home that evening around 9:30pm. I take these moments very personally, always wondering if he is moved to the back-burner due to his disabilities.

We watched some new movies about dragons, took a quick nap, and listened to praise and worship as we waited. Hospital time is such sweet bonding for Malachi and I, as time stands still and we lean into the hard.

If the Botox works like we hope, we will have to repeat this procedure every 3 months indefinitely to allow his bladder to void. The surgeon said “it looks like a snow globe in there” with he amount of debris collecting in his bladder from insufficient voiding.

This is a doozy of a month, with nearly 20 medical appointments between the four of us. Not to mention all the social events on the calendar the holiday brings!

Malachi is absolutely loving his Christmas tree. I love seeing that sweet smile. This season carries a lot of hard moments buried deep within my soul. Each joyful moment feels like an ointment to my wounds.

There is one specific Christmas song line that has captivated my heart as a medical mom. It comes from “O Holy Night”.

A thrill of hope the weary world rejoices.

In a world full of exhaustion, suffering, and brokenness…a world full of such true weariness…the birth of Christ is the reminder that God’s plans are so much bigger than what we see.

There is a thrill of hope inside of me that rejoices when I think about the birth of Christ. The fulfillment of a plan that God perfectly authored. And that birth led to such great sacrifice. God truly sent us a Savior.

“You see, at just the right time, when we were still powerless, Christ died for the ungodly. Very rarely will someone die for a righteous person, though for a good person someone might possibly dare to die. But God demonstrates His own love for us in this: While we were still sinners, Christ died for us.”

“But where sin increased, grace increased all the more, so that, just as sin reigned in death, so also grace might reign through righteousness to bring eternal life through Jesus Christ our Lord.”

(Taken from Romans 5, which talks so much about hope and the peace that it brings)

I am a weary mom, looking heavenward with a thrill of hope. And seeing the plan that God authored unfold for Christ reminds me of His omniscience (all-knowing) nature, crafting plans that perfectly fit the callings that He creates.

Please be in prayer for endurance for our family this month as we process several hard appointments and even more difficult memories.

Blessings,

Leah

I am writing this entry from the ER as we wait to speak with Malachi’s neurology team. His cluster seizures came back with a vengeance Saturday night and increased in frequency and severity yesterday. He easily had over 100 yesterday alone, each lasting 10-30 seconds. The “what if” mental game began and I thought it would be best to get him in for a CT to make sure his brain ventricles had not changed with his non-functioning shunt issue. The fastest way to get this done without prior authorization requirements from insurance is to go to the ER.

For all you medical nerds, here are some comparison images from August and today. As you can see there isn’t much change in the ventricles (the black spaces within the brain).

The radiologist also agrees that they are the same size as the last scan, so praise God for no brain surgery! But we still don’t have an answer for the cluster seizures and no way to slow them down without heavily sedating Malachi. Blood work looks great and no signs of sickness.

We are expecting to go home soon as there isn’t anything further the inpatient setting can do for Malachi. I hate that we have to enter a germ filled space to get him checked out, and I prayed fervently as we walked in that angels would surround Malachi as we entered those doors.

We will meet with his epileptologist later this week to talk through medication changes but until then there really isn’t anything we can do to slow them down. His seizures are a symptom of brain damage, and can be triggered by a number fo things…hormones, pain, weather change, moon cycles…so many possible triggers. We have a emergency seizure management protocol that we start if the seizure lasts longer than 5 minutes but with these clusters they only last 20-30 seconds with a small break in between.

Going backwards in time a bit…

We had a wonderful Thanksgiving and even went north for a few days to visit family in Ohio. Malachi worked SO hard on the ride to get his arm up and around Levi as he slept. Here was so proud of himself and so were we. I showed it to Levi later and he teared up.

Levi told me last week that he wants to have 12 kids when he is older and he wants one to be in a wheelchair just like Malachi.

The boys got to play with their cousins and create all sorts of memories. We rented a whimsical house on a farm for the whole crew and it was the house little kids dreams are made of, with secret staircases and hidden doors. Levi says his favorite thing was playing hide and seek, and to be honest I wanted to play too haha! Malachi was an excellent first floor “seeker” as well.

Malachi especially loved seeing his Grammy!

We stayed in Ohio a few days longer than the rest of the family and found an awesomely accessible rental house for two nights, ramps and all! And Levi loved getting to sleep on a trundle bed.

We came home with happy hearts and a bag full of hand me downs, which is always a real treat for Levi.

We don’t do a lot of traditions in our little family of four as our life is a bit to unpredictable and it sets us all up for disappointment when we can’t do things like we’ve always done. But one thing that we have tried to prioritize is picking out a Christmas tree. It is one of Malachi’s all time favorite things to do, and there is an amazing tree farm right down the road that is always so kind to our family.

Malachi wasn’t feeling 100% as we shopped for a tree this year but he still did his best to give us his opinions and help us choose a perfectly beautiful tree for the living room. Levi also enjoyed the process, even getting the chance to carry the saw back up the hill now that he is a big ol’ 8 year old.

We spent some quality time with the monkeys this week, which always leads to some fun photos.

And we all got the chance to attend the wedding of two sweet friends!

It has somehow become a very busy season for our family, but the variety has been a treat.

Trips to the ER always have great potential to trigger some PTSD memories for me…actually the triggers and emotions begin prior to even leaving the house as I prep our bags for a potential stay. Between both kids we have been in well over a dozen of those ER rooms; re-entering those spaces floods me with memories. Almost all of our ER experiences end with an admission, surgery, or ICU stay.

This morning I felt the emotions deep within my belly, almost as if my body was trying to convince me to change my plans. The mental battle that takes place is something I can’t really put into words. I am attacked with worries that I am over-reacting. And then come the fears that I am under-reacting and it could lead to horrible outcomes that I could have prevented.

I don’t talk about this often, but the battle of my mind is truly a daily struggle. Even as we shopped for a tree this year, and Malachi was not himself, I had the thoughts of “What if this is the last tree Malachi will ever get to pick out? Will I ever be able to come back to this place again? How will Levi handle life without his brother and the life alterations that a loss like that would inevitably create?”

If I am not cautious and careful I can allow the joy of the moment to be strangled by the fear of the unknown.

This morning as I spoke with doctors I felt such a wave of discouragement on Malachi’s behalf. He endures so much, and has no voice to speak his emotions and pain. I feel helpless as his mother, but that pales in comparison to the helplessness he must feel. This weekend as I have looking in his eyes, so weary from seizures, this verse has been playing over and over again in my head.

2 Corinthians 4:16 “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”

This verse applies to every single one of us, regardless of diagnosis, disability, or stage of life. Each of us were made to be pilgrims in this world, traveling towards home.

Reading this verse helps me replace the sadness of the journey with the reminder of the hope of the final destination.

Fixing our eyes on the unseen is a decision we have to make. Our human nature will always fix our eyes on the seen. But faith asks us to divert that gaze and focus on the unseen.

Please be in prayer for Malachi, that he can overcome these seizure clusters and regulate. And please continue to pray for wisdom for Jake and I, that we will be sensitive to the directions from the Lord regarding his care.

Sincerely,

Leah

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

It has been an up and down few weeks as we continue to navigate medication changes with Malachi. We will follow up this week with his urologist and also do an MRI to check his shunt, but the seizure clusters have been slowing down a bit and he has been more mentally clear over the last week.

The boys had fall break last week (Jake’s was the week before) and we spent most of it at the farm. Georgie the monkey learned how to push Malachi’s wheelchair, much to his amusement. And a sweet new baby zebra was born on the farm.

It truly is Malachi’s happy place. And Levi just doesn’t realize yet what a special privilege it is to play with exotic animals anytime he wants to.

Levi had some testing done last week to test for dyslexia as well as some other academic things. He did great on the first portion but then we took a break for lunch, hoping that would help break up the session. Unfortunately it seemed to have the opposite effect and he wasn’t able to focus well on part 2. We will find out the results soon and go from there.

We celebrated test day/Fall Break with a trip to Chuck-e-Cheese. This was Levi’s first time and his excitement was so cute to see. And Malachi got a case of the giggles, thoroughly enjoying the competition in the arcades.

We are still in the middle of some pretty big battles right now, with health issues and insurance being at the top but several smaller battles ready on deck. With the boys back at school this week I will have my parking lot work hours back, three hours each day to sit at the boy’s school and do remote work from my car.

Last night I went down to the filing cabinet to dig out some paperwork and I stumbled across some things from high school. As I looked through these old pieces it felt like I was looking through a different person’s life. I laughed at the carefree things in that file- a girl with such simple dreams and priorities. And I grieved over the relationships lost and the unmet expectations of that young girl.

Next I found file folders with all of the medical records from the night each boy was born. I took a moment to read through a few pages and the memories started to flood in. Tiny little ink footprints on pages- attempts from the nurses to create normalcy in such a foreign and dark world.

As the night went on I was gripped with such a sense of loneliness, living a life that is unrelatable to others. I have a file cabinet full of chapters of a story I haven’t written but am a main character in.

I closed the file cabinet and went back upstairs to medicate Malachi. And as the night went on that pang of loneliness grew inside of me and I could feel an emotional breakdown coming on. So I leaned into it and let myself have a moment to mourn.

Malachi stayed up late last night and as I scrolled on my phone I stumbled upon a blog post from 4 years ago that was such a needed reminder. Maybe this post from the past will speak to your heart as well.

______

October 19, 2021

On Thursday and Friday Malachi spent a few hours at school at his request. Levi and I went into town and ran errands while we waited to pick him up and I tried to catch up on all the things that are exceptionally hard to do with a wheelchair and another toddler in tow.

Simply getting Levi out of the car and carrying him into a store in under 30 seconds was such a unique experience. I just felt so…normal. As we wheeled down the aisle with Levi in the cart I had people make eye contact with me and stop to interact with Levi. They complimented his hair, asked him his age, and smiled with their face and their eyes. I know that sounds like an odd thing to mention but special needs moms rarely get eye contact from strangers. We get awkward shuffles out of the way and we get lots of well meaning comments (“Wow you have your hands full!” or ”God gives special children to special people.” etc)

The anonymity I felt this week as just a typical mom was really refreshing- but then when I realized it was refreshing I felt a pang of guilt as if I were cheating on my special needs momma self. I love my unique motherhood journey and I have accepted the role that God has placed me in, but the social encounters this week really made me think.

I have been thinking specifically about relationships and how isolating our world can get. We have a wonderful community support system but sometimes it feels like we have worn out our welcome and we tend to see friends slowly start to drift away. Friendship with our family is a lot of work and we tend to ”bleed” onto those around us without intentionally doing so. I know this potential for friendship destruction exists so I catch myself trying to bubble wrap my friendships and not let always see the hard parts of our lives. I shield them away for fear of losing another friend, but in turn that leads to a superficial friendship that doesn’t last.

The psychology of rejection is something that has a grip on me. I don’t know if any of you share that same struggle. Each time I think I have overcome I am reminded by a circumstance or a memory that I have not fully healed from the many moments of rejection in my past from people I loved.

But I am coming to terms with the idea that God never intended us to blend in. And He provides a continual reminder in His word that our reliance should be placed on Him instead of others.

I can apply this thought to my family specifically, as God has clearly written us a novel that I have never seen in a bookstore.

But I can also apply this thought to the way we are called to live our life. When we strive to fit the mold of the world we will never be fulfilled. I think about those encounters with strangers in the store this week and how yes, it was refreshing but in the end still so unfulfilling. The devil used that temporary high in my heart to plant potential seeds of bitterness.

Matthew 7:13-14 ”Enter through the narrow gate; for the gate is wide and the way is broad that leads to destruction, and there are many who enter through it. For the gate is narrow and the way is constricted that leads to life, and there are few who find it.”

As a child of God I have chosen to walk the narrow road. It seems to foolish to know that I acknowledge that and then I complain about how narrow and sometimes isolating that road can be. As I reflect back on relationships that have dissolved I can’t ignore how toxic many of those friendships were in my walk with the Lord. Sometimes we foolishly mourn over branches that God has clearly pruned from our life to allow healthier fruit to grow.

Instead of looking for eye contact from strangers for encouragement on the road I need to make eye contact with God- because in the end that relationship will never dissolve. God welcomes my mess as He recognizes that He is the one who entrusted me with it.

______

Sincerely,

Leah

This entry was supposed to be posted on Sunday night but clearly that didn’t happen! There are certain seasons where the complicated nature of our world feels like water resting just below my chin, distracting me from other things. We are in one of those seasons.

A big part of being a medically complex mom is using my imagination to pretend like life isn’t THAT chaotic. We move through each day in our “normal” level of chaos and do our best to not look left and right…because that’s when we realize how abnormal our normal truly is.

When realities disrupt my imagination I am forced to look complexities in the eye. And then it usually leads to a “If You Give A Mouse A Cookie” situation, a book that tells the story of a boy who gives a mouse a cookie which leads to a continuous circular chain or requests.

After Malachi’s spinal fusion earlier this year he lost the ability to urinate on his own. We have been managing his retention decently, hoping that his ability would return as he recovered from surgery. But here we are 6 months later and the problem still exists.

I don’t know if it is nerve related or something else but either way it needs to be investigated and treated. Urology is a new specialist for us and starting with a new doctor is absolutely exhausting. Summarizing Malachi’s medical history is like reciting the Declaration of Independence. And each of Malachi’s specialists tend to focus only on their specific issue and the solutions often compound other issues.

The urologist decided to try a new medicine that works as an Alpha blocker, allowing him to void more easily. In a typical patient this would be a great plan of action. For Malachi, slight changes in medications can trigger a domino effect in his world and de-rail so many other things, and this round is no exception.

Urology asked us to reduce his medication for his secretions. But reducing that medication caused his secretions to rest at the base of his throat and created some pretty intense respiratory symptoms and horrible oxygen levels. So that led to a visit to the Pulmonologist to explore other secretion management options.

Urology also ordered several tests and appointments, so off to the hopsital we went for imaging and a rough experience with the Children’s Hospital- it is too raw for me to get into right now without getting frustrated all over again. But my heart broke for my Malachi.

We slowly introduced the new medication and when we finally reached full dose Malachi’s epilepsy flared like a fire breathing dragon. This weekend the seizure clusters began, having over 40 seizures on Saturday.

This led to questions about it being strictly medication related….or exploring the idea that his disconnected shunt could also be a factor. I reached out to the Neurosurgeon to ask about an order for imaging who then passed me to the Neurologist. I have been trying to get help for several days now and each of his specialists seem to be passing the issue on to the next. And in the meantime Malachi’s seizure clusters still very much exist with dozens of episodes every day. And an exhausted Malachi.

So when do we sound the alarm? When do I decide to take him into the Emergency Room and work on getting those tests STAT? I feel like this is a urgent situation but when I am presenting it to his specialists they don’t seem to share my level of concern. Do I enter their mindset or stay vigilant in mine, recognizing that no one knows my son like I do.

This, ladies and gentlemen, is called the medical mom dance. Always trying to decide if our chaos is chaotic enough to warrant a true emergency. And recognizing the regret that can easily take root should we not make the right decision for our warrior. But also recognizing that taking him into the Emergency Room could potentially introduce him into something entirely new that will lead to new and serious medical issues.

Malachi is very tired and not himself. When we medicate for new symptoms one of our biggest watchful concerns is whether or not we are trading “quality of life” for symptom management. We are hoping this is a honeymoon phase from introducing the new med and he will regulate soon. But until then we have to limit our interactions out of the house and try hard to not overstimulated his brain.

In addition to that chaos we are now receiving the medical bills from his $1.8 million Vanderbilt stay. Last week we received a bill for over $32,000. We have waiver programs to help us cover what insurance won’t but the phone calls to get the ball rolling and prevent it from going to collections are taking up a large portion of my to-do list. Just to stay compliant in these waiver programs I have to meet with case managers at least once a month, either remotely or in person in addition to all of our specialist appointments which are each an hour away.

My brain is fried. I don’t often reach these levels of exhaustion- physically, emotionally, spiritually. But we are here and I am up to my neck in it.

Please pray for Malachi. He has had such a hard week. And when we don’t have control of his seizures I am uncomfortable sending him to school. He is missing out on a lot right now socially. We attempted the rodeo this past weekend and Malachi had over 20 seizures in less than 2 hours, prompting us to head on home.

We have been trying to make up for the pause in his social calendar with visits to the farm to see his animal buddies. Tonight, Humphrey the baby camel is on the top of his favorites list. But Georgie the monkey and him have also bonded this week over his many attempted (but unsuccessful) robberies into Malachi’s wheelchair bag. Oh Georgie.

And lots of soccer games!

We have also been trying to entertain Malachi at home to keep him engaged and joyful as we sort out his new complications. We used some Kohls Cash to buy a tennis ball launcher for the boys to be able to throw the ball for the puppies and it has been so much fun.

Quick Levi story time. This one has been making me laugh…

Over the weekend I commented to Levi that we needed to go and grab our jackets. He said “Mom, did you know that some people call them jackETS and some people call them jackASSES?” (Obviously not a word that we use in our household)

I asked him where he heard this info and he told me that a kid at school had told him that. We corrected him of course, but hearing that word come out of his tiny 7 year old mouth did catch me off guard.

This week I am praying Philippians 4:7 over each member of my family.

“And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.”

I love the truth that the peace of God is like armor to a weary heart. Its purpose isn’t simply to provide comfort but to prevent…to guard from further wounding and disruption.

I pray that God’s peace will overwhelm Malachi in those scary seizures. I pray that his heart will be guarded from the chaos. And I pray that same prayer over our family, as each of us process the chaos in our world in very different ways.

God hasn’t given us an easy path to walk, but His presence along the way is a promise I cling to.

Sincerely,

Leah