I was going through my camera roll trying to find a few decent photos for tonight’s post and realized that I have just one photo from the last two weeks.

We have been moving a mile a minute and trying to keep up with the many things going on right now.

Malachi and I took our trip to Nashville two weeks ago and met with his new Urologist to discuss his neurogenic bladder. As you may recall, I was having some big emotions surrounding this appointment and anxiety in starting over with a new specialist. But the appointment went so incredibly well!

The new doctor believes that what we are doing now to empty Malachi’s bladder is working well enough to continue without intermittent catheterization. He does think we will eventually have to start that routine, but for now we are going to watch and wait. He did not feel that the Botox injections were worth the hassle as they only last for 3 months and he requires being put under anesthesia each time for these injections.

The doctor listened to all of our concerns and even waited patiently for Malachi to respond. I was so proud of him as he used his communication device two times during the appointment, particularly expressing his excitement that he didn’t have to be catheterized daily. Our next appointment and ultrasounds with him have been set up as telemedicine/remote visits so we can avoid making the 6 hour trip.

We have had several other appointments in the last two weeks, but nothing noteworthy to report. We have also had an incredible amount of rescheduled appointments that are now moved to the end of the summer. Truthfully, I am not mad about the last minute changes, as we needed a few moments to breathe.

Levi’s anxiety continues to rise as we prepare for his Cincinnati trip. He has started to develop a stutter, something that happens when his system is feeling overwhelmed. He is extremely fragile these days, and small things feel like big things as he is trying to keep his system regulated. Each day he finds something new to have a meltdown about, needing to express big emotions.

This is the final week of school for all three Carroll boys. Jake will wrap up teaching this coming Friday, and Malachi and Levi will also be done. We have several summer projects to tackle and new routines to establish.

We live in a beautiful area with several amazing outdoor spaces to explore. This past week I ended up at a local river twice, once for Jake’s end of the year cardboard boat project and once for a birthday party. As I drove that familiar drive I flashed back to college Jake and Leah, as we would spend our days weekends hiking up the steep mountain above this river, playing in the muddy caves below it, then jumping in that river in the middle of the night and floating by the moonlight to rinse the cave mud off. We would camp under the stars and talk about the 4 children we were going to have and all the adventures we would take them on.

We had such fun adventures, and not a care in the world.

I smiled this week, mentally allowing myself to flashback to different scenes from the past. Sometimes it feels unsafe to allow myself to flash back to those moments, as it leads me to long for a future Jake and I used to talk about having.

But I am thankful for those memories. And I am thankful for the many moments of friendship and carefree love that Jake and I had in those early days. Such a bittersweet memory for me.

We are nearing closer and closer to some pretty big hospital days for our family. I find myself being drawn in to the Lord as my anxiety builds, almost like my heart knows that I am ill-equipped to handle what is about to come.

I want to encourage you to take a moment to watch this video, as it so accurately displays the struggle of a medical mom. Please know that it is a raw video and hard to watch, but is incredibly accurate:

https://youtu.be/8CenL-3O_m0?si=b3qAhC76VMdiix9t

Raw and honest moment…
Medical moms. We live in a world that is hard to explain to others, but this video does a great job of letting you see behind the curtain. Every scene in this video has been me at many points over the last 13 years. I often look in hospital mirrors and do not recognized the grief-stricken person staring back at me. But we have to take a deep breath and keep going forward with optimism for the sake of our scared children.

Three years ago someone came to me and told me that I am one of the most inauthentic people they have ever met, manipulative, living the life of a hypocrite, does not believe that I hear from the Lord, and said that our other friends feel the same way.

Those words wounded me. And truthfully still do, as my prayer is to point others to Jesus in word and in deed. I have approached the Lord in humility and asked Him to show me any truth in their words. And God and I have had some beautiful conversations about it and the stewardship of His grace for my inadequacies as well as the wounding words of others.

The truth is, there ARE two versions of a medical mom, as this video portrays. And while we would like to compartmentalize our hardships and their lasting impacts, they blend into every aspect of our lives including friendships.

There is complex PTSD that I deal with on a daily basis….and many times I do not feel safe enough to share that side of my motherhood with many. It is such a fragile side of me, and when I sit it in too long it affects my ability to be the caregiver I need to be. And I truly believe the Lord doesn’t want me to set up camp there. When you ask me how things are going I will often instinctively answer “Pretty good”, as I mentally evaluate if you are really desiring to carry the emotional load of my honesty or just making conversation. I have seen in the past that my honesty can make others very uncomfortable. This is why I write my blog- it is my safe space to be honest.

But there is another side of me….a pretender. Someone trying to relate with the normalcy around her that doesn’t exist in her own life. A mother trying desperately to protect her children in a necessary world that can carry a lot of physical and emotional scarring. Medical moms feel the continual drive to shield or distract our children from trauma, which requires us to take a deep breath and pretend like everything is okay….even when it is far from okay. Our children and spouses see behind the mask, but play the game with us to help us all survive the scary paths. I can’t hide anything from Malachi- we are connected in ways I can’t explain. And 8 year old Levi is starting to understand the game as well, as we gear up for his 30ish surgery next month.

So can I be inauthentic? I guess you could say so. But it is not a deceptive tactic….it is a trait that our hard path has created as we process layers and layers of trauma and can’t find safe people in our world to share that with. I am not praising this trait as if it is a good thing, but rather asking for grace as we wrestle with it. It is not a badge of honor that we wear.

The further in this journey I get the more I realize that the ONLY one who is capable and eager to carry my load is the Lord. He assigned me the role I have been given, knowing that I am not strong enough for it. His power is made perfect in our weakness.

“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.” Matthew 11:28-30

Any strength you see in me is a mirror showing you a glimpse of HIS strength. I am broken, flawed, and incapable of surviving this calling apart Him. And the dependency on Christ that this calling requires is truly a gift.

“I have been crucified with Christ and I no longer live, but Christ lives in me. The life I now live in the body, I live by faith in the Son of God, who loved me and gave himself for me.” Galatians 2:20

Please keep our family in your prayers this month, particularly for God’s peace to overcome our fear.

Sincerely,

Leah

The Lord is my shepherd, I lack nothing.
He makes me lie down in green pastures,
he leads me beside quiet waters, he refreshes my soul.
He guides me along the right paths for his name’s sake.
Even though I walk through the darkest valley,
I will fear no evil, for you are with me; your rod and your staff, they comfort me.

You prepare a table before me in the presence of my enemies.
You anoint my head with oil; my cup overflows.
Surely your goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever.

Psalm 23

This week I read through this chapter and grew unexpectedly emotional, starting to feel the weight of the season we are entering. I have talked about this before, but when you have medically complex children you are asked to walk often through the valley of the shadow of death. While these upcoming surgeries for both boys are not expected to be life threatening, they take us into a world where both of them have faced death. And the memories of those experiences have seemingly woven themselves into my DNA, creating such anxiety in me when we have to re-enter those places.

That anxiety is felt by all of us. I am then challenged to try to protect my boys from absorbing it, as each of them carry unique anxieties of their own and shouldn’t have to bear mine.

We have been through the valley before. We know how to pack. We know how to prepare. We know how to get there. But it doesn’t make the trip any less dreadful.

Each year, around a month before his summer surgeries, Levi begins to have intense anxiety and cannot let me out of his sight when he is home. This week it has started, and he has to be by my side at all times. We are doing our best to keep our days busy and keep his mind focused on other things.

This weekend Levi wrapped up his outdoor soccer league. He was a social butterfly, definitely more interested in hanging out with the cool college players that coached his team than actually playing the game. But He smiled at the end of each session, and practiced some independence so we consider it a win.

After his final game I asked Levi to pose in the yard with his medal. He asked if his daddy could take a photo with him, which we happily did.

But after that photo he said “Mom, we have to go in and get a photo with Malachi too! I don’t want him to feel left out.”

So we did just that. And of course my heart melted seeing Levi be so intentional, and seeing such joy from Malachi.

Malachi enjoyed sitting on the sideline this season and listening to the games each week. He loves a good competition.

Tomorrow Malachi and I will make a 6 hour round trip to Vanderbilt to meet with his new urologist. I have such mixed feelings about this appointment. I was trying to explain my emotions to Jake this evening and was able to explain it a bit like this…

Vanderbilt moves patients through like a factory. Most hospitals do, but they seem more focused than others on getting you in and out as quickly as possible.

We are meeting with a brand new department tomorrow, which means I will have about 15 minutes to communicate his current and relevant past health, current and past urinary issues, our family’s goals/priorities for Malachi’s life (which don’t often match medical flow charts), and come up with a course of action. I expect we will leave with an operating room date penciled in for more Botox injections and a follow up appointment. I am already a little fragile at the moment with dread for the upcoming few weeks so I am really hoping for a productive and thorough appointment where we can feel seen and heard and my son is treated with the dignity and respect he deserves.

Malachi is aware of his upcoming surgery on his hip, and surprisingly he is very clearly signing that he wants to have it done each time I present the option. He has emphasized that his hip is causing him pain. I am so thankful for his ability to communicate with us. And his brave little heart never ceases to amaze and humble me.

Malachi has hit another growth spurt in both weight and height. Just this week I have started to consider starting the process for a ceiling track system. There have been a few times lately where my confidence wavers when carrying him down the hallway to his changing table, and I don’t want to wait until we have an incident to get something safe in place.

We have been getting a lot of great Malachi smiles lately, and overall his health right now has been stable.

The boys have been coming to work with mom a lot lately, and get paid in animal snuggles.

So back to my intro verse above…

As the tears welled in my eyes this week reading through that familiar Psalm, God highlighted one of the verses for my heart.

You prepare a table before me in the presence of my enemies.

There is such comfort in realizing that God knows we are traveling back into that dark valley. He knows the weariness that aches in my bones. He sees the fear in the eyes of my children. He sees through my facade of confidence and sees my brokenness as a mother, unable to take away the pain in my children.

Yet in all of this, He has prepared a table for us. He has created a respite for us in our weariness, a table overflowing with His peace.

That prepared table reminds me that sometimes the valley of the shadow of death is exactly where we are meant to be. It is in that very valley that we learn the depth of the love of God.

In the darkness we have no other option but to follow our Shepherd- sustained by his provision, guarded by his protection, and wrapped in his divine comfort.

It is in the valley we feel the gentle nudges of his staff, guiding us away from the danger and towards the paths of righteousness. Those nudges are often dulled when we are in our world of comfort, but magnified in the echoing valley.

It is there where we see the droplets from His anointing drip off of our heads, saturating the unknown ground and reminding us that God’s power is made perfect in our weakness. He will give us a portion of His strength- the exact amount needed to fulfill the tasks He is calling us to.

His abundance. His mercy. His goodness.

The valley trains our eyes to look to Him.

And the table is evidence that He is leading us to the exact place we are meant to be.

Please remember our family over the next several weeks in your prayers. Specific prayer needs right now are Levi’s anxiety, our endurance, and Malachi’s peace.

Much love,

Leah

Part of being a mom is keeping a close eye on the calendar and planning all the things, and for medical moms that include medical appointments, prescription refills, surgeries (and the pre-op and post-op appointments that come with them), and so much more. Our calendar has been wonderfully slow and “normal” this month but as I look forward to next month I feel the bubbles in my belly already starting to stir.

Between May and June we have over 25 medical appointments and 2 surgeries. Levi will go to Cincinnati at the beginning of June for his summer airway surgery and Malachi will go to Vanderbilt two weeks later for his hip surgery. A lot of preparation goes into surgery weeks, and if you have followed us for long you already know that Malachi’s routine surgeries often end up being everything but routine. Yes, we have to prepare logistically for these weeks but the bigger challenge is prepping emotionally as a family. We have to prepare for physical pain, for hard conversations, for separations, and for spiritual warfare.

So for the next few weeks we are cramming in all the family fun. Walks in the evenings, board games, family movie nights, and mini adventures.

I have been putting in some extra hours at the farm and the boys have been joining me and getting to meet some of the sweet new babies.

Malachi has still been struggling with his breathing, which has been exacerbated by his newest molars making their appearance. Because of this he has not been able to attend school and he’s not too happy about that. I am hoping we can get him stabilized this week and back to his routine. The discomfort is also keeping him from getting a good night’s sleep. But oh boy does this kid love board games! We aren’t able to leave the house much with his loud breathing, so we have been filling the time with lots and lots of games.

Levi is doing well and is taller every morning it seems. He really loves school and is soaking in all the things he hears. My favorite Levi story from the week is from one day he joined me at the farm. I was working in the shop when some Spanish speaking customers came into shop. Levi heard them talking and his eyes lit up, excited to hear something he has been learning so much about at school. When they came up to the counter to pay for their items he casually chimed into their conversation, “Cuatro, Cinco, Seis” (4,5,6). Obviously this was completely irrelevant to their conversation but they were the only Spanish words that came to his mind in the moment. They very graciously chuckled and I was so grateful for their kindness. Then he leaned forward and continued, “Leviticus, Numbers”. Apparently he thinks those are Spanish words as well. I wish we had a video of the moment and my horrified reaction after. Oh Levi.

Luke 5:24-25 “Then Jesus turned to the paralyzed man and said, ‘Stand up, pick up your mat, and go home!’ And immediately, as everyone watched, the man jumped up, picked up his mat, and went home praising God.”

I have been reading in the gospels lately and came to the story of the men lowering their friend through the roof to the feet of Jesus. This story grips my heart in such a special way now that I am the mother of a child with disabilities. The kindness of the friends, the grace and mercy of Christ, the visual of seeing that miracle take place….imagining the reaction of that man’s parents brings me to tears.

The mat, a large piece of the identity he had carried for so long- Jesus didn’t ask him to cast it off. Instead he told him to pick it up and go home. Sometimes the very things we are known by, even the hard and arduous things, Jesus can heal and turn into a testimony of Him that we are called to carry.

That mat that showed so much brokenness now was used to display God’s glory. What a reminder!

Please pray for our family as we enter another season of hard things.

Sincerely,

Leah

Spring break has come and gone and tomorrow our family will be back to our normally scheduled chaos.

Jake teaches in a different school system than the boys and their spring breaks happened to be on different weeks this year. For Jake’s week off we tackled some much needed home improvement projects and spring cleaning. One of the more noteworthy ones is Levi getting a bedroom update.

When we began building our home in early 2017 we were a family of three, and by the time we moved in we were on the edge of being a family of 4! We designed the home with Malachi’s needs (present and future) in mind and he has his own special room with several touches that he will need in the future. Like a ceiling track option when he is too large for me to carry, and special electrical touches to help with machines/ventilators in the future should he need them to live.

Malachi started in that room but with his epilepsy and nighttime seizures he is not safe to sleep alone right now, so we have set Levi up in that room. It is still used for Malachi’s medical needs, diaper changes, and equipment but the other half is Levi’s special space. I have Levi down to night feeds only for 2 hours each night right after he falls asleep (usually 11p-1a), and I need him in the closest bedroom to the living room so I can hear his pump alarm. He moves so much at night that it often kinks and I have to go in and untwist the tubing so the feed keeps running. In the last hour I have had to go in 5 different times and fix his tubing. They have started making them differently and the tubing is so much weaker and floppy.

Malachi and I share what will eventually become Levi’s bedroom, a standard bedroom at the other end of the hall that has a queen bed in it and a sleeping chair for when Malachi is recovering from surgeries and is uncomfortable laying down.

When life gets EXTRA complicated and Jake and I need to be able to switch out caregiving in shifts we move furniture in the living room and set up a portable, adjustable bed in there for Malachi and use the couch for a parent to sleep on.

All that to say…the common theme in nearly each scenario is that Malachi is often the priority. And sometime that carries guilt when parenting Levi. He deserves to feel like a priority, because he IS a priority too! So we spent some time over break creating a more personalized special space for him. He got a new bed frame, a basketball hoop, a nightstand, and space to play. He is happy as can be, but we have already found that we have to create new rules haha…like when I found a bag of pepperonis and mini marshmallows in the nightstand.

We have also stepped out of our comfort zone and signed Levi up for a local outdoor soccer league.

Yes, he has played in our league for the last 5 years but we are on the field with him and able to monitor his airway firsthand. We talked to him at length about advocating for himself and recognizing when he is getting to a dangerous place with his breathing. He still requires more breaks than his peers and being able to verbalize the need BEFORE he is breathless is vital.

We have enjoyed watching him play soccer in this league but we are also very much enjoying watching him advocate for himself. There is something so scary, fun, and entertaining about watching your child grow up.

And I must admit that there is something very freeing and enjoyable about just showing up to a soccer practice/game and just sitting on the sideline without coaching.

The boys had their spring break this past week and we spent most of it at the house dealing with some major allergies. The pollen count where we live is shockingly high and it has messed with all of us. We took trips to the doctor to make sure it wasn’t something more and tests confirmed that allergies were the culprit. Malachi ended up on oxygen most of the week, requiring suctioning often, as he couldn’t clear the junk in his lungs and throat. And Levi ended up with an ear infection. I developed another sinus infection and Jake is still battling.

I am so incredibly thankful for the medical supplies we have at the house to handle life. Before we had home oxygen we would have to take Malachi to the hospital each time he needed supplemental oxygen and stay several nights/weeks. But now we have the freedom to hook him up when he needs it and resume life as much as circumstances will allow.

This weekend we had family over for an egg hunt and game night. We don’t often do traditional holiday things, but egg hunts were one of my favorite things as a kid so we thought it would be fun to hide some eggs in the back woods. Levi acted like hunting his 10 eggs was an absolute chore so I don’t have any fun photos for you of his grumpy self.

But Malachi had a blast! He had signed the night before that he wanted the dogs to help him hunt again like last year. We have learned the hard way that Tuck will open the eggs as he brings them over, as he knows they may contain candy. But Shiloh retrieves them gently and delivers them to Malachi like it was the job he was born to do!

Malachi loved the adventure of driving his little truck deep into the woods and finding each of his eggs. He genuinely had the best day and was all smiles most of the night thinking about it.

Last night before bed we tried a new tradition where we put two Easter baskets on the table and put a heavy rock in each on to represent the sin and the heaviness it brings. I had Levi go find 2 red shirts from the closet and we used them to represent the blood of Jesus covering those sins with the death on the cross. Overnight I replaced the rocks with a present in the basket so when they woke up they would find the gift. We talked about how Christ also gave us a gift on that resurrection morning when he walked out of the tomb…the gift of salvation!

And today we celebrated the resurrection of Jesus. We walked through the ministry, death, and ascension with the boys and explained how important the fact that Jesus was resurrected truly is! I asked Malachi if he believed in Jesus and all the things we had read and he signed a very hearty YES!

We talked about Christ’s nail scarred hands and Levi asked me “Does Jesus still have the marks on his hands and feet?” I had to stop and think about this for a minute, as I am not confident scripture clearly answers that question. I told him I wasn’t sure, and asked him why he thinks Jesus had them when he came out of the tomb.

Levi smiled really big and confidently said “Because our scars tell our stories.”

And I couldn’t love that answer more.

Much love,

Leah

P.S. Sometimes I write these blogs and worry that I am only presenting myself as a theologically amazing mother. And please hear me say that I am flawed and imperfect in many ways. Evidence of that can be found almost daily in Levi’s embarrassing conversations with others….like this morning when he asked someone at church if the person next to them loved Jesus. She answered yes and Levi replied with “Well, you can’t tell it by the look on her face.” And last week’s conversation with a college age girl with a low cut dress on: “Are you sure that dress is appropriate?” Parenting is one of the most refining adventures.

It has been a whole month since my last post! I am usually very routine, making it a point to sit down and post every two weeks but the last month I have stayed in survival mode and every time I sat down to type I went cross-eyed with exhaustion.

Catch-up time!

Malachi’s CT came back showing that his ventricles are still the same size as his last scan. So at this point we will continue to delay any surgeries or interventions until his spinal fluid demands it. Neurosurgery is an annual appointment for us, but usually when something goes wrong with Malachi’s health that is the first thing they tend to investigate.

We completed a pretty miserable Urodynamic study on Malachi and were scheduled to speak with the doctor this week to go over the results….but the office called this week to let us know that his Urologist is on medical leave indefinitely and we needed to switch to a different provider. Unfortunately this area has limited access to pediatric urologists, so we are going to have to start traveling to Vanderbilt for this specialist as well. It is a 3 hour drive to Vandy. Malachi is overdue for his next round of Botox injections for his bladder so we are hoping to get seen quickly and talk through the results of his study.

During the study I asked some questions to get an idea of what we were dealing with and it seems as though Malachi’s bladder muscle is no longer contracting at all. If this is left unmanaged long term it will eventually cause kidney failure; Jake and I are very intentional about diaper changes and helping keep him on a schedule to help his system manage.

We saw his neurologist this month as well as the Gastroenterologist for both boys. They are both the same weight at about 60 pounds and growing taller by the day it seems. The boys are both progressing in their weekly physical therapy sessions and Levi’s handwriting is getting more controlled, which is helping his confidence levels!

Levi did his science fair project on Samuel Morse and we are proud of the hard work he put in. He loves science and history right now and is a sponge for new facts.

Malachi is also enjoying school when he gets to go, but recently there has been too much sickness floating through the school for us to safely send him. He did win the “Best Hat” contest a few weeks back and was proud as can be.

In the midst of the normal chaos, we had birthday parties, out of town guests, and lots of new farm babies to play with. I have been putting in some extra hours on the farm as our busy season is beginning!

Two weekend ago I turned 40 and we took a family trip to Asheville, NC to see the Biltmore mansion. This had been on my bucket list for several years, but I always felt guilty dragging the boys to such a historical nerd attraction.

As I looked into the adventure I saw that they offered a Falconry class, so we used some of the boy’s homeschool funding to sign up for this special treat. We emailed the instructors to explain our unique situation and they said that, while their birds were not accustomed to wheelchairs, they would be willing to give it a try.

The falcons had bells tied to their feet to help them be tracked easily, and Malachi’s eyes lit up as he audibly tracked the birds. Seeing his smile and excitement was such a treasured gift and will be a forever core memory for our family.

If you get a free 97 seconds check out this video of our adventure and Malachi’s sweet laughter…

We stayed on the Biltmore property in the Village Hotel which is attached to several restaurants, stores, and an ice cream shop. We were able to navigate from the hotel to everything we needed without getting back into the car, which for wheelchair families is truly a blessing.

The boys loved the adventure and it was the most successful family trip (well, 24 hours haha) we have had in a long time. Jake and I both felt so happy and full of life as we left. Sometimes the effort it takes to go on adventures like this one don’t always match the outcome.

The house itself was really neat to walk through as well! There is a small elevator to get you to the 2nd floor but the rest of the house was inaccessible for Malachi. He and Jake walked the property while Levi and I explored the inaccessible floors.

I will say that Malachi still very much enjoyed the Biltmore house adventure, and their trolleys are all handicap accessible! Here are some photos of those as well as the elevator inside the mansion.

Today we wrapped up another year of our soccer ministry. This year was our biggest group yet with 130 players, ages 3.5-11. With that many children we ended up doing 8 different practices each week which meant Jake, myself and the boys were at the church from 5-8 every Monday, Tuesday, and Thursday and on Saturdays from 8-2. On the off days we were concession stand shopping trips, organizing the rosters, and doing all of the admin work the league required.

Yes, it was exhausting work….but this year we felt the “ministry” within what we were doing more than any other year. We were able to truly bond with each of the players as we shared Jesus with them each week. We had several in the league this season that had not heard even the basic Bible stories we were using as our framework for presenting the gospel.

And oh the stories we can tell you! These kids kept us laughing all season long. Last week I brought a water bottle full of water that had food coloring in it to represent sin for an object lesson I was doing. Afterwards a 4 year old came up to me and tapped me on the shoulder saying, “Coach Leah, that sin bottle is dip spit.”

Then there was this little 4 year old that refused to play without his Spider-Man mask on.

This was year 5 for the league, so it feels like a big reunion each year to reconnect with the kids and catch up on their lives again.

Levi has had a harder time this season “sharing” his parents with something else that steals our attention and focus. Jake and I were talking today to each other about the amount of children in the league that don’t have father figures in their life, and what a cool thing that this year Jake was able to be more present and help fill that role for some of these kids, encouraging them each game and building character.

Later this afternoon Levi asked to talk to me. He started asking very specific questions about certain players and their dads. I could see the wheels turning in his little head as he processed a life where parents weren’t there to cheer you on. We talked about James 1:27 and how we are called to help orphans, and while these kids aren’t necessarily orphans, we get the unique opportunity to fill a hole for a few weeks that may be empty in their lives. The more he thought about it the more soft his heart became and he softly said “Mom, I am glad I have parents like you…and I am glad we do this soccer league.”

While we may be tired, it is the good kind of tired that comes from focusing on others instead of yourself.

Last week I took our out of town visitors over to the Lee University campus for a tour. As soon as we started walking the waves of memories started to hit. Lee was a fresh start for me, and at the time exactly what I needed.

We passed the park bench that Jake and I used to meet at freshman year for Bible studies each night. We had gone to the bookstore and bought two of the same Bibles and would sit and read a chapter independently, both underlining and highlighting things we wanted to discuss, then we would talk through the scripture together.

I smiled as I passed that bench, remembering two people who truly wanted to pursue Christ but didn’t really know what we were doing.

A walk with the Lord doesn’t have to be perfect. It doesn’t have to have all the answers, or look like the walk of the person next to you. As a child of God we are all on different paces of the same journey of pursuing Him. And there is beauty on the unique walk on that narrow road that each of us are called to.

Jake and I needed those park bench days. We needed time in the Word, getting to know God and each other, and letting Him refine us as individuals and a couple. We aren’t perfect in our relationships with the Lord, but God opens His arms to messy too.

Don’t let anyone tell you that your pursuit of the Lord isn’t beautiful.

Thank you for your patience with me as this update was long overdue. I don’t expect this to be the new trend. Just needed some time to give 100% to other things and sleep like a brick at night! Please continue your prayers for our family as we navigate new specialists and out of town appointments. Also wisdom to continue creating quality of life for our Malachi, even when it doesn’t line up with “best practice”.

Much love,

Leah

This week I am dusting off the hospital bags, but praising the Lord they have sat long enough to collect dust! We are creeping up on the 1 year anniversary of Malachi’s spinal surgeries and long hospitalization and I catch myself holding my breath that something dramatic might happen.

Over the next two weeks Malachi has some very big appointments. He has a CT scan scheduled to check his brain ventricles, as the shunt in his brain is still disconnected. He will also have a Urodynamic study done on his bladder and from there we will potentially be entering a new world for his kidneys with intermittent catheterizations. We also have several other routine appointments sprinkled into the mix and lots and lots of medical phone calls to get through.

The paperwork and phone calls often feel like a full time job, and finding a stretch of time that I can focus all of my energy on them.

Let me give you a few quick examples….

-I just mailed off our renewal for TennCare (secondary state insurance coverage) for the boys. We already know we make too much to qualify for this; aside from income if you have any asset over $2,000 you do not qualify, so owning a car alone immediately disqualifies us. But without secondary insurance our family will bankrupt very quickly. We have to fill out these application forms each year in order to get a denial which we can then use to apply for waiver programs to help offset costs. Levi qualifies for a waiver that allows up to $10,000 per year towards medical costs/therapies that insurance won’t cover. We use most of this to cover his Cincinnati surgery bills. And Malachi qualifies for a waiver program that comes with secondary insurance. But the only way to renew these waivers each year is to complete a TennCare renewal and get denied. This packet requires copies of each bank account statement, vehicle information, life insurance policy paperwork, paycheck stubs from the last 8 weeks, and all sorts of other private information that takes several hours to gather and submit.

-Vanderbilt has a policy in place that when a patient turns 13 the child’s parents lose access to their medical records in order to give the child privacy and control over their medical decisions. Even with a neurotypical child I think this policy is ludicrous. On Malachi’s birthday I lost access to his MyChart, the method in which I communicate with his doctors and appointment information. I spent a significant amount of time filling out paperwork, even doing virtual call with Vanderbilt after at least 6 phone calls. They called me Friday to let me know that the doctor didn’t sign the paperwork in time and my application has now been shredded. I can start all over again or I can drive the 6 hour round trip to get the paperwork signed in person.

-I am continuing to fight a $33,000 bill from Malachi’s surgery/stay last year. The hospital didn’t code it correctly when they sent it to our insurance so a portion of his $1.8 million stay was denied and is now “our responsibility”. This is a series of phone calls I make once every 4 weeks when the bill comes again and they threaten to send it to collections and impact our credit, when in fact it is an error in coding and our insurance should cover this in full.

-Managing approximately 20 prescriptions each month, incontinence supply orders, feeding tube supply orders for both boys, and equipment order for Malachi’s machines.

These are just a few examples of the things I am supposed to knock out in my “free time”. Usually days that I sit down to tackle phone calls leaves me in tears of frustration and keep me from the basic momma tasks that also demand my attention. Most days I feel like I am doing a sub-par job at each of the roles I am in, instead just focusing on surviving the next 24 hours.

Malachi has been enjoying life lately and is getting better and better at his communication switches. He chose a friend from school to be his voice on the recording machine and enjoys sounding like a teenager instead of mom. He is still rocking it at horse therapy each week and genuinely loves helping out with the soccer league and hearing the games.

We are enter the world of thicker mustaches, chin hair, and some super stinky armpits! But he still wraps his arms around me as I carry him to bed each night and gives me a big hug.

Levi is a bundle of energy and still keeps us laughing. He scored another goal in his soccer game and seems to be more focused this year. We actually are stepping out on a limb and signed him up for another local league when the one we run ends. There is a bit of anxiety, as he still struggles to breathe when he runs but we have talked to him about being his own advocate and learning how to talk to someone new and express his need for a break.

One of Levi’s classmates had a rock climbing birthday party this weekend and we RSVPd but assumed Levi would struggle with climbing. His cerebral palsy makes it hard for him to use his fingers to grab, as well as affecting his ankles and core. It was definitely hard for him, but he loved the challenge! Today he woke up and said his “heart and arms hurt”, which we were able to translate as his chest and arm muscles haha!

Mark 12:41-44 “Jesus sat down opposite the place where the offerings were put and watched the crowd putting their money into the temple treasury. Many rich people threw in large amounts. But a poor widow came and put in two very small copper coins, worth only a few cents. Calling his disciples to him, Jesus said ‘Truly I tell you, this poor widow has put more into the treasury than all the others. They all gave out of their wealth; but she, out of her poverty, put in everything- all she had to live on.’ ”

A few weeks ago I started the Bible Recap plan again, working to read through the Bible a few chapters each day. Even though I did this same exact plan two years ago and have read the scriptures many times before I still am finding so many encouraging scriptures and convicting truths in the Word.

As I prepared for one of the kids league Bible studies last week I read this familiar story and spent time really studying it. We were discussing what “honoring God” truly looks like, and as I read this story I spotted such a beautiful reminder.

Out of her poverty

So many times I feel like I am too exhausted and overwhelmed to give time, energy, mental space, finances….and the list goes on and on.

It is rewarding and exciting to give from our surplus. But the sacrifice required to give out of our poverty comes at a cost. And counting that cost yet walking forward in faith with a pure heart set on honoring God…that is truly a hard thing to do.

These four words keep coming to mind each time I find myself struggling to give a little more of myself as a mother, a wife, a caregiver, an advocate, and the daughter of the King.

When we give out of our poverty without expectation of a return we are practicing a life of surrender and trust in God.

I am praying for a heart that doesn’t pause and consider the cost. I am praying for a heart that joyfully gives out of my poverty , knowing that God is the multiplier and can continue to do far more than we could ask or imagine (Ephesians 3:20).

Blessings,

Leah

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