With so many surgeries this month we have been trying to spend a lot of time at home and not exposed to any potential sicknesses as we prepped for surgeries. The next open dates for surgery with Malachi’s hip surgeon is 7 months out, and Levi’s team in Cincinnati is typically at least 4 months out. One sickness could have knocked us out of our spots and started the countdown over again.

As we inched closer to Malachi’s Vanderbilt trip, Levi started with the big emotions. Levi came out of his bedroom the night before Malachi left for surgery asking “Mom, when you cut up those onions at dinner did you accidentally leave some in my bedroom?”

Me: “No buddy, why are you asking?”

Levi: “My eyes keep on crying on their own and I don’t know why.”

Malachi and I headed to Nashville late on Monday evening as we had to check in around 5am on Tuesday for his big hip surgery. He was excited to spend the night in a hotel with just mom, and we made it an adventure.

The original surgery plan was to go in and do one hip this round and come back to do the other hip in a few months. After they took him back to the operating room (OR) I headed to the surgery waiting area and settled in, expecting it to last around 4 hours. After an hour they paged me to come to the desk and I felt my stomach drop, as this is not a normal thing.

I checked in at the desk and they said “The surgeon needs to speak with you- we aren’t sure what it is about but can you please meet him in room 1.” My mind was trying to work through the potential reasons for him to leave the OR with Malachi and come speak with me, and I am sure you can imagine some of the darker paths that mental game took me down.

He came in and told me that Malachi was doing great, and he would like to do BOTH hips this round instead of just the one. He had studied our previous Vanderbilt stay and tried to figure out where they went wrong on his inflammation and pain post-op and he felt like he had formulated a plan that would help prevent a repeat of that same response. They increased his Vitamin C, Vitamin K, and increased steroids in the OR to prepare his body for the trauma it was about to go through.

Side note here- I am convinced that this orthopedic surgeon is one of the best in the world. He actually designed the surgery Malachi had done, driven by the desire to create better options for medically complex kids. The amount of effort he has put into Malachi’s feet, legs, and hips over the last several years is phenomenal and he treats Malachi with such dignity and respect. We all look forward to his appointments and surgeries as there is such a trust built there.

Malachi’s surgery ended up taking about 7 hours, in which they removed the heads of both of his femur bones and then attached/stitched the remaining bone into the hip joint permanently. They will never have the ability to dislocate again using this method. It will take about a month for his scar tissue to form, and he has a foam wedge to keep between his legs to help with the positioning and healing posture.

By removing the top of each bone he lost some length in his legs which naturally loosened up his leg tightness. But to help additionally with some specific tightness in his knees, he also did a quad muscle release to allow his knees to bend at 90 degrees. The other route would have been removing his kneecaps, and we were grateful he didn’t have to have that one as it just sounds cringey haha. Malachi’s legs currently feel like spaghetti noodles, with hyper mobility in all the joints. We expect this to stiffen up slightly but it is definitely taking some getting used to. In fact, he has a new “party trick” as the doctor called it, where his lower legs rotate all the way around- which ABSOLUTELY freaked me out (as well as the nursing staff). But that is a crazy story for another day.

Malachi went to the ICU after surgery and was bright eyed and feeling great. Then the meds started to wear off and his pain played the up and down game over the next several days. He is still in pain, but we are staying on top of it! He has done an EXCELLENT job communicating with his nurses and doctors using his switch and I have loved seeing his providers faces when they realize how cognitive he is.

It has also felt like a family reunion of sorts, as we were here for so long the last round. The amount of people that we recognize, and recognize us, is so fun for him. We also got to see several of the providers that he developed special bonds with, and he has enjoyed that very much.

Our stay was delightfully uneventful compared to the last stay at Vandy and we were able to come home on Saturday night.

Surgery days are so wild. It is hard to explain the many rules I make up for myself in my head….things I would have never imagined people think about, but now can’t imagine any other way. For example, fluid intake. On surgery days I try to drink a lot of water early on in the day and stop halfway through his surgery. That way I have enough time to get it all out of my system before I go back to PACU and can stay by his side at all times without needing to find a restroom. Sometimes we are in PACU for hours, and then the transfer to ICU can take some time. This round I did not have the luxury of having a bathroom or shower in our room, so I became very dehydrated, not wanting to leave his room to go down the hall to the shared toilet area. And going days without a shower, not wanting to leave the ICU to use the shared shower room.

I’ll stop rambling now…

The surgeon’s first words after surgery were “Malachi REALLY needed to have this surgery done.” He explained that the arthritis was visibility bad on both femurs, the right more than the left. I was confused as Malachi kept telling us that his left hurt worse than his right. The surgeon explained that the left femur bone was resting on his sciatic nerve and was definitely causing him significant pain. I am so thankful he was able to do them both and relieve him from all of the pain!

We have officially checked all the looming summer surgeries off the list and are looking forward to a carefree July. We will have an incredible amount of appointments over the next few weeks, including some return visits to Vandy, but no admissions or procedures are on the close horizon.

Total side-note here, but the amount of people that think this is an actual real snake on the wheelchair continues to amaze me. We actually had two audible screamers on surgery day when they saw it haha!

I let Malachi make his list for his hospital stay and he had lots of opinions. He wanted a particular essential oil diffused in his room, his aurora borealis nightlight projector, his Chick-fil-a blanket, and fun new socks. He also devoured some new audiobooks- signing “more” after each chapter.

Now that we are back home, I have taken a big, deep breath. Coming home is always exciting but also brings with it 100% of the caregiver responsibilities. When we are inpatient the nurses bear the brunt of the responsibility for pulling meds and making sure we stay on schedule. Right now Malachi is receiving 30 different medication doses each day and has other specific medical needs and routines that I have to keep track of, all while actively monitoring his heart rate and oxygen and addressing those changes when they come. The “tired” just changes to a different version of “tired” when we come home. But I am slowly returning to normal(ish).

While I sat in the surgery waiting area I started to re-read a book that the Lord had put on my heart called “The Red Sea Rules: The Same God Who Led You In Will Lead You Out”. In it there are a few quotes that really made my mind work.

“Worry is putting question marks where God has put periods.” -John R. Rice

Bishop Fulton J. Sheen called worry “a form of atheism, for it betrays a lack of faith and trust in God.”

As I read this chapter I stopped to evaluate my level of worry for this season of surgeries for the boys. I can list a lot of emotions that I struggle with, but over the last decade worry seems to get bumped further and further down on the list. We have watched God meet us in the lion’s den, wrap us up in His arms in the fiery furnace, and part the Red Sea for us to walk across.

But as worry has moved down the list, I have felt a spirit of apathy (spiritual indifference) replace it. Sometimes I look at the list of hard things we continue to get called towards and the zeal I once had for the opportunity for faith growth has faded. I still believe that God is good and my faith in Him has not wavered….but oh how I am weary of walking my children towards danger. And the isolation of this calling has felt exceptionally heavy lately.

While we were in the hospital this week I received a voicemail from another special needs mother whose son had been through a very similar surgery with the same surgeon. She shared that she had added us to her church’s prayer list and they had spent time that evening lifting our family up in prayer during Bible study. For some reason that voicemail really got the tears flowing. To hear that these strangers spent time in prayer over our family really touched me. They had watched their friend walk through the same journey we are now on, and they knew how heavy the load was. There was such a tone of sincere empathy rather than sympathy and it felt like a big hug from the Lord.

This week a memory on social media popped back up with something I had written several years ago. As I read it again, I was so surprised by how timely the message was, as my heart needed the faith reminders. So I thought tonight would be a good night to share that one again in case any of you needed to hear it as well.

————

In my life I have been called by Christ out of the boat many times. I have locked eyes with Him and boldly and faithfully stepped out of the boat to walk towards His embrace. In my early years I welcomed these moments, seeing them as an honor as I knew they strengthened my reliance on God.

But things changed dramatically when my precious children were added into the equation. Now I find myself getting sick to my stomach each time Christ looks at me from the middle of a raging sea and says “Come”. Each surgery decision, each new procedure, each new diagnosis is a raging sea moment that I don’t have the opportunity to ignore. It is a storm we must enter.

I cling tightly to my sweet boys as I step with shaky legs into the tumultuous waves and try desperately to remind myself that He is faithful. That He is the calm in the storm, and I need only to rely on His power to keep me on top of the water. I still get distracted by the waves as I watch them jump up and strike my children time and time again. And like Peter many times I get overwhelmed by the storms and start to sink, shouting for God to rescue us.

Staying in the boat and holding my children safely in my arms seems like such a safer option…but my faith in that situation is placed in the boat itself…not in my God. And there is healing in the storm.

We each have a choice. We can choose a weak faith that stays in the comfortable parts of life, never being challenged and pruned, but never experiencing true growth. Or we can choose to leave the comfortable moments and search for faith challenging ones knowing that the fruit that we can produce after a pruning can be magnificent.

Faith was never meant to be easy. Sometimes as parents we are called to charge head on into the messy parts of life as uncomfortable as those parts may be. And while these moments may challenge our already weak faith in inexplicable ways, it is in these raging sea moments that our children see our faith come to life. I want my kids to see me as a willing water walker. I hope I can cast away my spirit of fear and trade it for a boldness like Peter’s.

This week is a walking on water week. As much as I desire to stay safely tucked in the boat I see the beauty and power of being called into the storm, as that calling leads me closer into the embrace of Christ.

I have learned to kiss the wave that throws me against he rock of ages. – Charles Spurgeon

Thank you for the support and encouragement many of you continue to send our way. The prayers were felt and this particular stay I felt surrounded by the peace of God, knowing we were exactly where we were supposed to be.

Sincerely thankful and blessed,

Leah

Last week little Levi and I packed up and headed north for his annual surgery at Cincinnati Children’s Hospital. Packing for just Levi and I always surprises me, as I have way less medical gear to think through than a typical family trip somewhere. I do have to remember unconventional things like his feeding tube bags, pump & charger, ice packs, extensions, formula, meds, syringes…but that is a drop in the bucket of what I have to remember for Malachi!

Right before I jumped in the truck to head out I grabbed a spare g-tube just in case we had any incidents. We are supposed to carry one with us at all times, and typically do as I have a spare for each boy in the van. In true Carroll fashion we made it to Florence, Kentucky and his g-tube randomly popped. We found a Kroger gas station, bought a bottle of water, and opened the new kit to pop a new g-tube in at the gas station and continue our journey. We can never do things the mild and boring way haha.

We stayed with my dad while in Cincinnati and Levi got to play with family leading up to surgery day. It was a great distraction for him, and grandpa made Levi an epic pre-surgery meal.

We were so excited when we got the call with an operating room (OR) time of 8:08am, arrival at 6:30am. Usually when he is one of the first cases of the day they aren’t behind schedule yet and things go quickly.

We woke up bright and early and checked in right on time. We spoke with all the necessary surgeons and 15 minutes prior to his OR time they administered “silly juice”, a medicine they can give to children to help calm them and give them a temporary amnesia for what is about to take place. Levi settled right into his silly meds and we waited to head down the hall.

Unfortunately the case before us in the OR had a very sudden emergency that kept them from leaving the room. As time ticked on Levi’s medication started to seem to wear off a bit and I was anxious that we had missed the window for reducing his anxiety. We went back to the OR about an hour later than expected and out to the surgery waiting area I went.

Both departments were able to meet with me together afterwards and discuss the results. We knew based on last year’s post-op report that there would likely be some trimming this year, but the needed trimmings are going to be a bit more advanced than what we had hoped, requiring an inpatient stay. As you may remember, we sign off on all interventions as needed that do not require an overnight stay and if they find more complicated things to fix we postpone for a later date to help with Levi’s anxiety.

Levi’s vocal cords are growing with him and still holding their open shape. But the area around his vocal cords is growing up and covering the airway and needs to be laser trimmed off. He has had several of these trimmings before and typically does well, but this round will need some significant trimming and it may permanently affect his voice quality and volume. We are going to try to wait another year to do this and have already booked the OR spot and stay for summer 2027. If his breathing worsens or becomes dangerous we will move that date up.

He has also been having some issues choking on his food, like it gets stuck in his throat and won’t easily go down. They thoroughly looked at his esophagus and found some bumps that are catching food, and lingual tonsils that need to be shaved off. Next summer we will be bringing in a GI doc to the operating room to see what they can fix with this issue.

Levi was very sore after surgery and have some trouble eating when the numbing medicine wore off. The anesthesia also stayed in his system an incredibly long time this year. But by the next day he was mostly back to himself.

With the help of some very sweet friends and family, we were able to snag a free ticket to visit the Ark Encounter in Kentucky on the way home. I wanted to do something special with Levi and create a memory, and we did just that!

He also got to pick out some souvenirs for Malachi in the gift shop- a job he did not take lightly. We were both very excited to make it back home late Friday night and have been catching up on all the family game nights since.

This was the best Levi has ever done on a surgery trip and I am so proud of how he is growing. We had some sweet conversations on the way there and back, and he at one point told me “You know mom, there have been three things in the last year that have really helped me grow closer to the Lord.” I asked him what they were and he said “Grandpa’s situation (various health issues), Malachi’s surgery last year, and my Great Grandma dying”. I asked him how those things helped him in his walk with God and he said “They make me think about God and heaven.”

Levi had a sore throat for a few days and ran a fever (the bodies immune response when they clean/sample his lungs). But he is back to his chatty, silly self.

Next week Malachi and I will head to Vanderbilt for his hip surgery. They will be removing his femoral head in his left hip and attaching the bone (the greater troch for all you medical nerds) into the “C” cup to create a hip joint. They are also going to do some tendon lengthening in his hamstrings as well as remove some pieces in his kneecap to help with comfort in that leg. They are only able to do this surgery one hip at a time due to the amount of inflammation response it creates in the body.

He will be in a significant amount of pain post-op, and we will be staying inpatient until his pain is managed and he is safe to come home. A typical situation is a 2 night stay, but he told us to expect at least a week and hope he bounces back faster than that timeline.

As much as it breaks my heart that he has to endure more pain and surgery, we are told that many verbal kids that have this done are so happy from the arthritic relief after surgery and have zero regrets. I hope that is the case for our sweet boy. Malachi has a good attitude about this one and we have already picked out some movies and books for us to tackle while we are there.

WHEW the mental triggers lately have been a battle. Three different surgeries in three different hospitals over the course of 1 month. Each of those hospitals hold a bundle of hard memories for our family, and a lot of hard conversations and decisions. I have been emotionally exhausted and am stuck in survival mode right now….not really enjoying life but instead focusing on getting through each 24 hours. I am hoping July brings some predictability and joy back into our days.

Last week was our 18th wedding anniversary, but with the chaos we are dealing with we decided to postpone celebrating until July!

It is in these harder seasons where I catch myself getting a little more apathetic in my walk with the Lord. I have a harder time forming prayers, as each surgery feels like the result of unanswered prayers. I trust that God’s hand is upon us, and he is the author for each of our lives but sometimes that next chapter isn’t written the way I want it to be and I get nervous to read it.

A few weeks ago I did a personal study on the different valleys in the Bible and the spiritual significance of each. I remembered reading a chapter about valleys/troughs in C.S. Lewis’ The Screwtape Letters so I grabbed a copy off the shelf and read it again. I had marked up this particular copy and spotted a chunk I had underlined the last time I read the book. This book is written from the perspective of demon, so when he talks about “He” it is a reference to God and the “creature” is us.

“Sooner or later He withdraws, if not in fact, at least from their conscious experience, all those supports and incentives. He leaves the creature to stand up on its own legs- to carry out from the will alone duties which have lost all relish. It is during such trough periods, much more than during the peak periods, that it is growing into the sort of creature He wants it to be. Hence the prayers offered in a state of dryness are those which please Him best….He wants them to learn to walk and must therefore take away His hand; and if only the will to walk is really there He is pleased even with their stumbles.”

This was an encouraging reminder to me, as this has become a season of bumbling and thumpy steps of faith. Our faith walk doesn’t always have to look crisp and polished to honor God. Worship can sometimes come through tears and honesty with the Lord.

Please pray for Malachi next week, and for prayers of peace over each of us as we all deal with a version of hard.

Sincerely,

Leah

Well, a whole lot has happened in the last two weeks.

Last week Malachi started sleeping more throughout the day and was clearly exhausted even though our schedule wasn’t very rigorous. He perked up a bit for horse therapy, board games, and soccer practices but then went right back to sleep.

At night he woke up two nights in a row with a tiny whimper of pain, which is definitely not normal for Malachi. When I repositioned him he went right back to sleep so we assumed it was hip pain from the side he was laying on.

My momma radar started flaring a bit more on Wednesday and we started going through our mental flow charts to eliminate causes for the change in mood and alertness. We hydrated extra in case the lethargy was due to dehydration. We did enemas to rule out constipation. We slept upright in chairs to keep pressure off his hips. He didn’t complain, but he was just still so tired and his heart rate started to slow way below his baseline.

On Wednesday evening Levi had his end of the year school play. I was hoping this would perk Malachi up, as he typically loves plays. And he wanted to get into it, but was very much distracted by something happening in his body. My stomach dropped, knowing that I needed to take him in.

We went outside after the play to take photos and I was very hesitant to take a family photo with Malachi not feeling like himself. I wouldn’t want someone documenting me in that state, but this little voice inside of me asked “Is this the last photo Levi will ever get with his brother?” I pushed the thought out quickly, scared a bit at how fast it popped in.

Thursday we decided it was time to head to the Emergency Room. I continued to second guess that decision, nearly turning around halfway to the hospital when Malachi woke up bright eyed in the back seat. But we continued, checked in, and went straight down for a CT. We know that Malachi’s shunt tubing has been disconnected for quite some time, so they started the investigation there. Within the hour they verified that Malachi’s ventricles were excessively full of cerebral spinal fluid (CSF) and he needed to have surgery immediately to relieve his intracranial pressure.

It was too late in the evening to get him into the operating room so the neurosurgeon on call decided to tap the shunt and drained an ounce of CSF from his ventricles to get him safely through the night. We went to the ICU for monitoring while we waited on surgery and settled in for the evening, with vitals being checked every hour.

As soon as the pressure in Malachi’s brain was relieved from the tap his heart rate started to normalize and his eyes were brighter. He went into surgery the next day (Friday) around lunchtime and got settled back into his room by dinner time.

The surgeon verified that the shunt unit itself was still working, Malachi has several feet of tubing that runs from the shunt down into his abdomen that needed to be replaced. They tried to remove the old tubing but it kept disintegrating each time they pulled so he made the decision to leave the old in and add a whole new distal catheter. Malachi has new incisions at the base of his skull, the middle of his neck, top of his chest, and two more on his abdomen.

He is healing really nicely and feeling/acting so much more like himself. We have been trying to even out his new haircut, which has been quite the adventure haha. Interestingly enough, this is the same week 13 years ago that he received his first shunt, and rocked the same hairdo! The white scars above his bandaid are from his original shunt surgery 13 years ago.

They discovered a little blood in his brain post-op which earned us an extra night in the ICU but the bleed self resolved and we were able to go home on Sunday evening. We will follow up with the neurosurgeon on Tuesday but clinically he is doing great!

When I made the decision to take Malachi in I started packing our bags. As you know, we pray for the best case, prepare for the expected case, and pack the car for the worst case. I was trying to hide the bags from Levi as long as possible but as soon as he saw my official “hospital” bag he started crying.

He is already dealing with some big emotions as we get closer to his surgery date, and this unexpected trip tipped his emotional cup over. Jake filled in the gap, taking his final day of work off to attend Levi’s morning awards ceremony and celebrate with him after while Malachi was in surgery. Trying to keep things as normal as possible amidst the chaos is such a balancing act.

Malachi and I had some special moments in the ICU together, finishing a few books, movies, and holding hands when he was scared. Our time together in hospitals is very special to us both…it truly is holy ground and we spend a lot of time singing praise songs to the Lord.

After surgery Malachi was a whole new person, eyes wide open for 3 straight days, just as content and as can be. We have slowly cycled back to a routine with him, and are still catching up on sleep.

On Wednesday we headed to Vanderbilt for his pre-op appointment with the hip surgeon. If I get into all of that this post will become a book so I will save that for the next blog post! But in summary, he is still planning to have his hip surgery on June 23rd and the surgeon expects him to spend some time in the ICU after, planning on being inpatient for about a week.

In other surgery news, Levi heads to Cincinnati for his surgery in 11 days. We have a packed schedule leading up to that trip, and we are hoping that the busyness of it all will help distract Levi from his anxious thoughts.

Levi’s stutter has continued to worsen and his tears flow freely these days. This morning we were a little slow getting into the sanctuary from Sunday School where he was anxiously waiting and he started sobbing, thinking we had left him. Right now he starts sobbing if he doesn’t know what room of the house I am in. It is heartbreaking working through these big emotions with him, as we are most definitely not qualified for that part of this journey.

“Glass Child Syndrome” is an informal psychological term used to describe the siblings of individuals with chronic illnesses or disabilities. The term highlights emotional invisibility- parents can get so consumed with the higher-needs sibling that it can feel like they look right through the other children in the home.

We are very aware of the potential of this with Levi, and try to come up with ways to help him feel seen. He and I planned a day together last week that was focused on just the two of us. And Malachi enjoyed the solo time with dad. But sometimes those grandiose gestures feel like band-aids on a gaping wound. I am going to try my best to make our trip to Cincinnati extra special for he and I.

In all honesty, I am still not fully recovered from this recent round. I feel depleted emotionally and physically. I think our pre-op trip to Vandy so quickly after our emergency was enough to push me into a funk and I am still working through dealing with jumping from one medical drama to the next one on the list.

I spent a lot of time in the Word this week, and the Lord pointed me towards so many needed scriptures that helped calm my heart. I don’t know how to explain it well, but Jake and I keep talking about the graciousness of God with this whole ordeal, putting the right people in the right places to help diagnose and resolve this matter before it became life threatening.

As Malachi was in the operating room I sat in his empty ICU room, staring at the empty space. These times while my boys are in the OR are my most vulnerable, and my brain can lock into God while my body still feels the reality that we are facing.

But this time around I felt a peace that can only come from God. These last few weeks I truly feel that God has been preparing my heart for what our family was about to encounter. It served as such a reminder to me that our “surprises” are still very much God’s plans.

Psalm 112 “Even in darkness light dawns for the upright…

I read this verse during his surgery and audibly let out a noise, realizing this truth is what I was witnessing. When I focus on God and trust in His plans for Malachi’s life I can always find the beam of His light in our darkness.

I have so many things I wanted to share with you tonight but this entry is getting a bit lengthy and my eyes are getting very heavy.

Prayer needs right now are for the many upcoming surgeries and appointments we have this month. We need prayers for health for our family so that everything can remain on schedule. And always continued wisdom and sensitivity to prompting from the Lord when emergencies like these arrive and need decisions to be made quickly.

Sincerely,

Leah

P.S. This has been our laugh for the week. Jake finished pressure washing the house and driveway this week JUST in time for a herd of neighbor cows got loose and came by for several visits…leaving their mark. The comedic timing was the laugh we needed.

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