The last few weeks have had their share of ups and downs. Transitioning into the school schedule has been harder this year than in the past but we are slowly adjusting and settling into routines. Every day I start with a list of things to accomplish and before I know it it’s 2am and I still have a list of unfinished things try to accomplish the next day.

Levi started the second grade and loves to learn. School is one of his favorite places to be, and he is always bubbling with such excitement when he gets in the car each day. I love getting to hear his version of the day’s events and hear the highs and lows of an 8 year old.

Malachi is also thriving, waking up on school days with a big smile on his face. And at the end of the school day he smiles even bigger when we ask him about his day.

Both boys came down with a back to school cold and Malachi had to take a week off. Usually with a standard head cold he is on oxygen 24/7 for about two weeks, and thankfully with this one he was able to come off of oxygen after 6 days.

I am continually thankful that we have all the equipment needed to keep him safe at home. During this round I flashed back to when he was little and similar sicknesses would hit him. We had to start the mental flow charts of deciding where the line in the sand was to take him in to the hospital. Since we live an hour from the local Children’s Hospital we are always trying to find that sweet spot with getting him there safely without incident. I can feel my heart beating faster just THINKING about those early days.

Malachi had a follow up appointment with the neurosurgeon to review a recent CT scan and, while his ventricles are slightly changed, they think this is his new baseline and are happy with the way his shunt is now functioning.

And since Malachi is officially cleared from all surgeries to get back in the pool, he enjoyed a nice float on Labor Day! He also started back at physical therapy last week, and is hoping to return to his horseback sessions soon.

This season of life is always a bit busier than our normal busy, as we still coach the high school girl’s soccer team. Coaching is something everyone in our family enjoys, especially Malachi and Levi as they get to hang out with some really fun girls. And Malachi LOVES a competitive game….especially when he hears dad yelling loudly.

Levi comes home from the games with all sorts of questions from things he has overheard on the bench, most of which make us chuckle. “Mom, is chicken butt a bad word?”

Levi’s personality continues to grow and having conversations with him is so special. When Malachi was sick, Levi and I took time for a mom and son date and went to the local fair. I used to be able to ride roller coasters like a champ but WHEW those days are long gone.

We met with some of his friends there and by the end of the night he told me “Mom, you know how dad and you dated and got married? I think that _______ is my type. I think I could marry her.”

He has since changed his plans and spent most of the day Sunday planning a wedding start to finish with another friend from church. Hearing them discuss the invitations, seating chart, and who would walk her down the aisle made me laugh. He is definitely a details guy. He even made her an engagement ring with some construction paper and tape.

Oh, and they started house shopping. I had to make him put his real money back in his piggy bank. Levi came up to me and asked “Do you and dad have joint bank accounts? I think we are going to do that too.” How he knows about that I have no idea.

We aren’t the type to encourage “relationships” among children, but we support imaginative play and this just so happens to be the topic of choice. We make sure to continually remind him that this is a pretend game he is playing with a friend.

Levi has decided he no longer wants a g-tube. We have been trialing a lot this summer on withholding his nighttime feeds on days he hasn’t done a lot physically, and still running the pump at night on days he has been active. On days off the pump he wakes up immediately asking for food and complaining about how hungry he is. He is definitely still burning extra calories with his breathing, but I also can relate to his desire to be done with the g-tube.

My biggest hesitation is administering his medications without a g-tube. He takes 5 doses throughout the day of several meds, including his epilepsy medications. For a typical situation we would work to start teaching him how to swallow pills, but there also is a fear in that process as he has the potential to aspirate uncontrolled fluid into his lungs during that process.

We are meeting with his GI doctor this week to discuss the next steps for Levi. I want him to know that his opinion and voice does matter and teach him how to self-advocate.

Mentally, I have been swirling a bit over the last month. I am thinking/moving/doing from 7a-2a every day but still feeling like I am not getting enough done. I feel like I am doing a very subpar job in each of my roles, which can get discouraging. Sleep has been choppy and rare with the boys being sick, and I am feeling every bit of caregiving deep in my bones.

I read a devotional last week and it took my breath away. I wanted to share it with you all, but please understand that I am only putting portions of it below, and not the whole article as it is rather long. I encourage you to read it in its entirety and will link it at the bottom of this entry.

“It was ‘good’, not perfect.”

Article by John Swinton (Linked below)

“Let’s begin with the suggestion that the original state of the world was one of perfection. Although some default to this language when interpreting the Genesis creation narratives, the text itself never uses this term. While Eden was originally untainted by sin, the Bible does not suggest that creation was perfect in the sense of flawlessness or static idealism.

Instead, the divine pronouncement is that the creation is good (tov in Hebrew). This word, in its biblical and theological context, does not imply perfection or uniformity but denotes relational integrity, aesthetic richness, diversity, and the capacity for fruitful, dynamic life and connection.

Adam bears the wound that makes community possible. His body, altered to make space for another, testifies that limitation and change are not contradictions of goodness but are conditions for love. If the grammar of Creation is goodness and not perfection, then bodies marked by difference, by need, by variance, are not deviations from the human norm. They are part of it.

What the church should see is this: The first scar in Scripture was not caused by sin, but by love. It was not a punishment. It was the cost of communion. If we miss that, we miss something important about the gospel.

Our wounds (like Adam’s) are not always chosen, and they are often not healed. But they are not disqualifications from belonging. They are reminders that we are part of a creation still yearning for its fulfilment that will be complete in the coming kingdom of God.

The church must learn to hear and resist this distortion. If God’s creation is good, then every life within it, regardless of capacity, cognition, or conformity, is already gifted with divine affirmation.” ⁠

You can read the whole article here: https://www.christianitytoday.com/2025/09/it-was-good-not-perfect/

Such beautiful truths that I needed to be reminded of. I hope they bless your heart as well.

Much love,

Leah

A few nights ago I was getting Malachi ready for bed as Levi got himself settled under the covers. He was watching me get Malachi in his pajamas and I could tell the wheels in his little head were turning.

“Mom, can I ask you a serious question about Malachi?”

“Will your question possibly hurt Malachi’s feelings?”

He thought for a moment and then said, “No, I don’t think so, but I am a little worried about when Malachi dies…if they put him in the ground how will we know when he is having a seizure so we can help him?”

The heaviness of that moment hit me hard as I mentally tried to unpack the layers of his question.

In our home we have chosen to embrace conversations about death as they frequently and organically come up. I believe that every person is in a state of dying…some of us just get there faster than others. And in our world of unexpected medical surprises it feels as though we are constantly wandering in and out of the valley of the shadow of death.

I continue to reinforce with the boys (and myself) that the timeline of our lives is determined by the God, the author. And He won’t take us from this earth even a minute before our book is finished. And while I would like to say that this truth keeps my heart secure, I still feel it ebbing and flowing in our dark hours as I wrestle with very human emotions that forget about an omniscient God.

I took a deep breath, as I felt my head spinning with emotion and my eyes fill with hot tears. I also looked down at Malachi to gauge his reaction to the question and his eyes showed he was waiting expectantly for my answer.

Malachi and I are connected in inexplicable ways. In the same way I can sense him seizing three rooms away, he can sense even the slightest tinge of fear or pain in me and mirrors my emotions.

And I had to look away from Levi, hoping that he wouldn’t see tears in my eyes and put this topic into a category that shouldn’t be brought up again for fear of upsetting me.

I took a ragged breath and thought hard about my answer, asking the Lord to guide my words.

“Levi, we don’t have to even think about that because the moment Malachi goes to heaven he is completely and totally healed. You won’t have to worry about him having another seizure….he’ll be walking, talking, and running with Jesus. I think we need to think about Malachi in heaven, not the ground, because that’s where he will be!”

Levi’s sweet response was paired with a moment of remembrance, “Ohhh yeahhhhh- he’ll be completely healed!”

And that was all he needed to hear as he laid his head on his pillow and said “Goodnight mom!”

I looked at Malachi’s face and he was grinning from ear to ear at the conversation, almost as if it ignited his imagination into the things to come. And seeing hope so incredibly tangible in that bedroom…

Hope from a little brother for his older brother, dreaming about they day they will run together on streets of gold.

Hope from a young man that carries a unique cross each day, but has confidence he will one day get to soar on wings like eagles, run and not grow weary, walk and not grow faint.

And hope from a weary momma, knowing that there is a God who cared enough about us to give us a hope and a future through the death of His Son.

“Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. For momentary, light affliction is producing for us an eternal weight or glory far beyond all comparison, while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal.” 2 Corinthians 4:16-18

In all transparency, I left that bedroom and allowed myself to sneak away and cry for a few minutes. I spoke with the Lord, acknowledging that I can’t do this anymore. A “take this cup from me” moment. The amount of times I am desperately unequipped for the task each 24 hours carries is humbling beyond words.

But thankfully I serve a God who continues to work through my weaknesses. His grace is sufficient, and all we are asked to do is walk humbly with our God.

In less heavy news….

The boys have started back at school and are waking up with smiles each day!

Levi gets in the car every day just beaming about all of the things that happened at school.

I took his photo on the first day and as I left the room I heard his apologizing to his classmates saying, “Guys, I am SO SORRY my mom is so embarrassing!”

Malachi is doing half days and is getting to take Chemistry, Design, and some other really unique and age-appropriate classes. His amazing teachers have designed a schedule for him that allows him to be with his peers, and the joy on his face each day when we talk about school is amazing.

We have an agreement with the (small, private) school that I stay on site while Malachi is there so I get a few hours to complete remote work for my 3 part time jobs. Independence has become very important to 13 year old Malachi and this allows him some autonomy but also assistance from me when he needs it.

The boys have been cycling through their many appointments lately, including Malachi’s post op trip to Vanderbilt. His hips are healing nicely and he has a few more weeks before he is fully cleared for therapies again. This x-ray gives you an idea of the bon removal from his surgery, as you can visibly see the femur heads are now gone.

Levi lost another tooth. And he has been enjoying “front porch sitting” as he calls it to “watch the sunset”. I am not quite sure when he turned 80 years old, and not quite sure how to tell him that the sun sets behind him, not where he is facing, but he doesn’t seem to mind.

This is a transition month for us, but sometimes new routines breathe a strange new breath into me and give my brain permission to re-establish our normal.

Please continue to pray for our family as we navigate our new normal.

Sincerely,

Leah

We are officially 5 weeks out from Malachi’s hip surgery!

Malachi is still in recovery mode and not fully back to his peppy self, but we have been able to have some joyous moments sprinkled within the hard ones.

Sleep is still very hard for him and most nights he wakes up multiple times with a quiet whimper of pain. I have been repositioning him often at night and we still can’t find the best way to position him. His legs are now very loose and rotate in unexpected ways so we have to monitor his legs closely to make sure they haven’t turned in an awkward position.

With sleep being so limited, our 24 hours all bleed into each other with no definitive start or stop to our day. My brain has been so cloudy lately and my body is begging me to rest but we can’t seem to find a new groove for that rest. It feels a little like a twilight zone so we have been trying to break up the days with short adventures here and there. We have done several play dates with friends and he is rocking his switch adapted Bingo game.

We will head back to Vanderbilt next week for his post-op appointment and make sure everything is healing as it should. I don’t expect there are going to be any surprises from this appointment, but Malachi likes to keep us on our toes.

We have also been trying to keep Levi engaged and enjoying what’s left of his summer. The amount of birthday parties we have attended lately is WILD and I have been so grateful to have things on the calendar that he can look forward to!

He also had a great time at soccer camp with his friends.

Jake and I have been very intentional about spending one on one time with Levi, running errands with just him and giving him time to talk through things. He has been frustrated this summer, asking why everyone else gets to go on vacations, mission trips, cruises, etc and he is stuck at home. Tonight he asked me, “Mom, why did God give us such a hard life?”

I don’t quite know the answer to that one, but told him that God must see something in us that we can’t see and trusted us to take our hard life and use to honor Him. It’s a concept he may not fully grasp right now, but we are hoping the seeds we are planting in his heart will grow fruit later in his life.

Jake goes back to school in just a few short days and the boys go back in about two weeks. We aren’t sure yet what the school schedule will look like for Malachi but we are all looking forward to creating some new routines and things to be excited about.

If I am being perfectly honest with you, sitting down to write an update has been very hard for me. I keep staring at the keyboard, but struggling with putting these last few weeks into words. Life has been pretty discouraging lately. Watching Malachi’s prolonged suffering during this recovery has been hard on him and hard on my momma heart. I have been feeling a familiar weariness and helplessness deep down in my bones.

I have been reading through the book of Ecclesiastes and the amount of highlighting I have done is comical. There are so many truths in there that I have needed to hear.

“For with much wisdom comes much sorrow; the more knowledge, the more grief.” Ecclesiastes 1:18

I thought about my motherhood journey with Malachi and the many phases it has gone through. In the beginning we were fueled by a blind hope, believing that he would be healed and made whole. That he would defy statistics and prove doctors wrong.

Each new year in the medically complex world has brought new knowledge…and new grief. Sometimes I shamefully feel offended by unanswered prayers, like our faith isn’t big enough. And I hear echoes of the voices of others saying that my faith is not authentic enough to truly hear from the Lord.

With each new diagnosis, each new surgery, each new surprise the load that we have been given feels heavier and heavier. And the walk with that load feels lonelier.

And there are times where I feel guilt over the grief I carry, repeating verses like “Consider it all joy” to remind myself of the choices we carry within our moments of grieving. But the more we walk in this calling the more I believe that grief can be a healthy catalyst in the walk of a believer.

Grief can act like a refiner’s fire, bringing impurities to the surface that you didn’t know existed deep within you.

Grief can remind you of your humanity, the brokenness of this world, and the desperate need for a Savior.

“The Lord is close to the brokenhearted and saves those who are crushed in spirit.” Psalm 34:18

God is able to prevent all the hurt and the brokenness. But sometimes the brokenness, the crushing, the diagnoses, the surgeries push our walk with the Lord from head faith to heart faith.

So today I am embracing the grief I am feeling as a process with the Lord and not a final end of a chapter. I am acknowledging the pain that it brings, and allowing that pain to bring me to my knees and call out to God to save us.

Please continue to pray over Malachi’s healing and pain. And for Levi as he sits sideline to hard things. Last week we visited a very loved elderly friend who is not in great health right now. When we visited she was sound asleep and didn’t look like the last time Levi saw her. He sat next to her without hesitation, telling her husband “She looks great!”

When we got into the car later he said “Mom, I told a little bit of a lie in there. I said she looks great and she really doesn’t.” I asked him if it was hard seeing her like that and he shrugged his shoulders and responded, “No, I have seen my brother like that lots of times.”

While God is writing some big testimonies for both of my boys, he is also adding chapters into Levi’s that I would naturally try hard to avoid as a mom. I am trusting in the author on this one, knowing that God is crafting something unique in Levi.

Thank you to all who have reached out to encourage me. Your prayers have been tangibly felt.

Sincerely,

Leah

We are a few weeks out from Malachi’s hip/knee surgery and life hasn’t quite settled back to normal. Malachi’s pain has been well managed though and he is so much easy to position in his chairs with his new hips.

His stamina for being out and about it very low so we have been spending lots of time at the house, mainly trying to nap and catch up on all the sleep he is not currently getting at night. Jake and Levi sleep during the night and Malachi and I sleep during the day. Sometimes I will sneak in an hour or two at night by turning on a movie for Malachi and keeping one hand on him. We are also staying close to home base so we can easily stay on his medication and feed schedules.

We have been able to get a few family game nights in which brought out some smiles in Malachi. Levi has also had some gracious friends over to play to help keep some normalcy for him.

And, of course, we have still been out and about for medical appointments, soccer practices, and a few fun social outings.

I have continued to work at my part time job at the farm, and Levi has come with me on a few shifts to spend some time with his friends (both animal and human). It has been a really good outlet for me to focus on other things for a few hours each week.

I have finally had time to take a deep breath and allow myself to process our whirlwind of surgeries last month. We had three surgeries in three hospitals. Each hospital carries its own memories, carries its own unique smell, and is adorned with distinct floor tiles that have caught my tears.

Last week we took off Malachi’s surgery dressings and whenever that time comes each recovery my stomach sinks with sadness over new “warrior marks” (as we refer to them in our house) wrapped all over his body. Each one represents suffering and each one tells a story. After each surgery I take time to grieve over those marks. The ashes of mourning exist, but the Lord faithfully and graciously wipes them away in His own timing.

Over the last 13 years my smooth, easy faith has been asked to develop jagged edges. Sometimes walking with the Lord will step you outside your comfort zone and into refining situations that can hurt tremendously. And while my mind often wants to focus on the hurt, it can become an idol of it’s own- stealing my focus away from the Lord and His promises.

While Levi and I were in Ohio for his surgery we visited the Ark Encounter. It was a lot to take in visually and later I kept flashing back to something I saw as we walked into the Ark.

This stack of 12 stones sits at the entrance to the ark, with a plaque above it that reads: “After miraculously enabling the Israelites to cross the Jordan River on dry ground, God told Joshua to have a representative from each of the 12 tribes take a stone from the river. The Lord instructed them to build a memorial with these 12 stones as a reminder to the coming generations of what God had done for them.”

“Take 12 stones from the middle of the Jordan…When your children ask someday, ‘What do these stones mean to you?’ You shall tell them….these stones are a memorial…that everyone on the earth may know that the hand of the Lord is mighty and that you may fear the Lord your God forever.” Joshua 4:3, 6-7, 24

In the Bible we read often about memorials that children of God were asked to build. These memorials were used to fight our human forgetfulness when things get difficult and remember the miracles we have seen and the promises God continues to fulfill.

The last two weeks I keep flashing back to this stack of stones. And the Lord has been working on my heart, calling for a shift in thinking.

Our family has seen miracles. We have been carried supernaturally by God. I have been physically lifted to my feet my angels. Our boys have survived moments we were told they may not. We have been led through fire time and time again and don’t bear the burn marks. God has been real and present and active in our family.

But when I re-enter hospitals my mind naturally dwells on the hard moments instead of the God moments. The Lord has put it on my heart to begin building monuments in those spaces, reminders of His presence and faithfulness.

Every time I have flashed back to a hard moment from the last month I have visually pictured a stack of stones in the corner of the room, shifting my focus from the hard to Him. And each time I am overwhelmed with His peace, remembering that we were exactly in the center of His will in that space.

I am sure it will take some time to build my monuments. But I am praying that God gives me the ability to stack with confidence, a tangible and visual reminder to all who see them that God is very real and very presently working in our lives.

“Great are the works of the Lord; they are pondered by all who delight in them. Glorious and majestic are his deeds, and His righteousness endures forever. He has caused His wonders to be remembered; the Lord is gracious and compassionate.” Psalms 111:2-4

Sincerely,

Leah

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