Oh boy, adjusting to posting every two weeks has been more difficult than I imagined! So much has happened over the last two weeks- the good, the bad, and the challenging. If I am ever late on posting that means we had a house full of teenagers until very late haha!

Good reports: Malachi has been raising his arm over his head! This seems insignificant but after ten years seeing such purposeful movement is so huge. He has been very proud of himself each time he successfully does it.

This week we received a package from Make-A-Wish and Malachi was so thrilled. He giggled as we unveiled each new item and talked about the trip. On a scale of 1-10 the excitement right now is a solid 100. Both boys squeal with delight each time we talk about it. We will be leaving for Orlando in one week! I can’t wait to share the details of our trip with you all when we get back.

May is always a busy medical month for us as it hits several of our big specialist appointments. But nothing negative to report from any of those, praise the Lord!

Challenging reports: Levi’s school year is coming to an end and we have been making our final decisions regarding next school year. We have officially made the decision to have Levi do another year in preschool with some pull-out services to try to concrete some basics. Levi’s fine motor restrictions make handwriting, coloring, and other things more of a challenge. The gap between him and his similar age peers is a pretty significant one, so navigating that new reality has been a something we have spent a lot of time and prayer on.

We try so hard for normalcy, so each time we aren’t able to achieve it a little piece of me mourns. But in the bigger picture milestones can be achieved outside of the normal timelines. So we will continue to focus on forward progress and be thankful each time that happens.

And now for some of the bad reports. Thankfully we are through most of the trials we have had over the last two weeks so I guess I could slide them into a different category now.

Malachi takes three seizure medications twice a day and he still has uncontrolled seizures (formal diagnosis: Lennox Gastaut Syndrome & Intractable Epilepsy). He is extremely reliant on these seizure medications for quality of life. One of the medications (Epidiolex aka FDA controlled CBD) can only be ordered through a mail order pharmacy and the timing is very strict for re-orders. We scheduled our delivery 10 days before he would run out but when delivery day came it did not arrive. I started making phone calls the next morning and they assured me it was on its way and to call back if it didn’t arrive the next day.

Very long story made short….the package was lost by UPS. This realization by the companies involved happened at 4:00 on a Friday. I immediately called the epileptologist office but the on-call doc’s solution was to take him to the ER if he started having breakthrough seizures. We spent hours upon hours on the phone trying to find a more reasonable solution, but in the end Malachi had none of this medication for nearly 4 days. The breakthrough seizures hit strong on the following Monday evening (15 large seizures in 1.5 hours) and we still didn’t have any replacement meds.

I ended up going to a local CBD dispensary and trying to find something comparable to give him until the medication arrived. And that was enough to get the seizures to calm down and put a smile back on his face.

There is definitely some holes in the process that need to be filled. Today I met with the epileptologist and discussed some solutions to prevent this from happening again.

The emotional toll this situation took on me was a significant one. Malachi’s quality of life was most definitely affected. He wasn’t able to sleep due to discomfort and watching him suffer without a reasonable solution to turn to was really, really challenging for us all. It brought about all of those feelings of helplessness, and as a mom that is one of the hardest pills to swallow.

Discouragement is always lingering in the shadows of our life, and when I have on my negative glasses I can find it pretty quickly. And the more discouraged I got the more useless I felt as a mom.

I spent time reading in Ezekiel this week, revisiting the prophecy in the valley of dry bones from chapter 37. The Lord takes Ezekiel into this valley where he is surrounded by piles of dry bones

Thus says the Lord God to these bones, ‘Behold, I will cause breath to enter you that you may come to life. I will put sinews on you, make flesh grow back on you, cover you with skin and put breath in you that you may come alive; and you will know that I am the Lord.’ So I prophesied as I was commanded; and as I prophesied, there was a noise, and behold, a rattling; and the bones came together, bone to its bone. And I looked, and behold, sinews were on them, and flesh grew and skin covered them; but there was no breath in them. Then He said to me, “Prophesy to the breath, prophesy, son of man, and say to the breath, ‘Thus says the Lord God, “Come from the four winds, O breath, and breathe on these slain, that they come to life.” So I prophesied as He commanded me, and the breath came into them, and they came to life and stood on their feet, an exceedingly great army.

I love this chapter as it paints such a vivid picture. And this week it served as a much needed reminder to me that without the Spirit of God within me I cannot function as a soldier of God…even in my mothering.

John 15:5 I am the vine, you are the branches; he who abides in Me and I in him, he bears much fruit, for apart from Me you can do nothing.

I pray that God continues to fuel me with His presence and gives me clarity to turn to Him for life when I have crumpled into that valley of dry bones. When we are feeling empty it is a great reminder that we may have partially disconnected from the Vine.

Please be in prayer for us as we prepare for a big, exciting week. Pray specifically over health for our family and that the memories we create will be lifelong ones we can look back to. Pray against the spirit of discouragement in me as we venture out of our bubble.

Much love,

Leah

This weekend we had the privilege to go witness my brother, Andrew, being baptized in Atlanta. It was a special time and it was a blessing to see him respond to promptings of God and choose to pursue Him unabashedly.

Andrew wrote out a testimony that was read during his baptism and, with his permission, I want to share it with you. Hearing it reminded me of the call to declare the works of God, as we read in Psalm 71.

Psalm 71:15-18 My mouth will tell of your righteous deeds, of your saving acts all day long—
though I know not how to relate them all. I will come and proclaim your mighty acts, Sovereign Lord; I will proclaim your righteous deeds, yours alone. Since my youth, God, you have taught me, and to this day I declare your marvelous deeds. Even when I am old and gray, do not forsake me, my God till I declare your power to the next generation, your mighty acts to all who are to come.

Andrew’s story:

My name is Andrew, and this is my story. This story isn’t one of radical transformation from a life of sin but will be relatable to someone here today. Growing up in a Christian home while attending a Christian school K-12th and Christian University trained me how to be a Christian very well….maybe too well, you can say I was a classically trained Christian. Unfortunately having an understanding who Jesus is can sometimes be used against Him as we never truly emulate Him by leaning in. This is where religion meets spirituality. Being Christ-like and a Christian seem the same on the surface, but for me they are different. “Christ in me” is what I was missing. I knew who Jesus was and He knew me, but I still kept Him at a distance. As an adult going through the motions I thought, “I’m good, I am covered” but wasn’t fully exemplifying Jesus in my marriage, as a father, or as a friend.

I recently went through a difficult trial and unsuccessfully tried to climb out of it on my own. At my lowest point when I was teetering on the edge about to fall, Jesus grabbed me with both hands and pulled me back into Him. He held me with His loving arms, spoke directly to me and performed a miracle in my life. After living 38 years in black & white, when I looked up I started seeing color for the first time…..and let me tell you, it is beautiful.. The beautiful component is that every time I get consumed by fear or guilt, He reminds me that “I am forgiven.” The immense pressures and pain of life can always be met by the rushing waters of grace. Today I proudly proclaim: “I’m not here for blessings, Jesus, you don’t owe me anything. I just want more of You.”

____________________

What a blessing it is to hear the ways God is working in his life, and changing generations to come. I hope hearing his story was an encouragement to you today, wherever you may be in your walk with God.

We rarely leave our “bubble” so a trip to Atlanta was a pretty big deal. The boys were the most excited about staying in a hotel room. But leaving our bubble means we enter a world of people that don’t know Malachi, and it is so easy for me to forget how much we tend to stand out. Even though I know it is coming I still experience second-hand embarrassment at all of the stares Malachi gets, not necessarily for Malachi’s sake but for the sake of the starers.

And each time we get the looks of pity I always think to myself, “If you only knew…”

So this week’s post will be all about finishing that sentence.

If you only knew how amazing Malachi is. He is so intelligent and intentionally funny. He has a sense of humor and likes to play jokes on people. He is the best secret keeper, and treasures the opportunity to keep a secret with a sly little smirk. He works so hard at all that he does and loves a challenge. His memory is genuinely impressive- we can play the first three seconds of a song and he can choose the correct one from a multiple choice list. He is opinionated and feisty but also filled with such tender love for others. He approaches life, even the trials of it, with such a positive attitude and his bravery is unmatched.

If you only knew how happy we are. Yes, there are so many hard things. But there is such a purity to our life. I get to connect with my son in a wordless way as our hearts communicate and beat in sync. I get to relish the simple joys of watching my child progress at his own rate. New parents watch for milestones and hang onto them with such pride. We will get to do that for a lifetime with Malachi, celebrating tiny victories each and every day.

A few weeks ago Malachi started wiggling his foot independently from his leg. This is the first time he has done this and I was so incredibly happy as it means his brain is making new connections. In our world there is always something to celebrate!

If you only knew the richness of faith and hope that this life has cultivated. For some faith is a choice, but for us it is a necessity. I am completely and utterly reliant on God to sustain me, and He has never failed me. I get to watch Him work in ways that can’t be attributed to anyone else. And getting to be a supporting character in a beautiful Bible story is such a gift.

The last two weeks have been requiring a lot of self-denial. And my attitude about it wasn’t the best. There were things that I wanted to get done and our medical routines didn’t allow it. I caught myself building up resentment and it kept bursting out of me in bursts of anger.

Then the Lord put a verse in my heart: “This is My commandment, that you love one another, just as I have loved you. Greater love has no one than this, that one lay down his life for his friends.” John 15:12-13

When I read this verse as a child I always viewed it as literally dying for someone else. Like jumping in front of a bullet meant for another. But God has been showing me that this verse also can mean sacrificing your quality of life to improve the quality of another’s. It requires the love of Christ to treat someone as more important than yourself.

Raising Malachi and Levi have brought the Bible to life and put actions to the words on its pages. This is probably one of the biggest blessings this calling has offered me. It is a refining parenthood journey, exposing so many flaws and failures. But it is helping to conform me into His image, and I am thankful for the help in practicing true surrender.

If you only knew how much this life has unlocked community and allowed us to feel the love of strangers. In fact, just today I came home to find a large bag on our porch filled with summertime activities for the boys from a stranger. These little things- simply being seen and thought of- have been such an encouragement over the last decade. We receive emails and letters from all around the world- hand painted pictures of Malachi, notes of encouragement, and devotional books from people we have never met. This life has allowed us to see people rally together to bless a family, and has created such a humility in us as the receivers.

But even more than the tangible blessings of community, we are also surrounded by prayers. And knowing that an army of believers is joining us in prayer is so incredibly powerful.

If you only knew…you wouldn’t be able to look at us with eyes of pity, seeing the true gift we have been given.

I could keep going on and on and on. But then it would just feel like I was bragging about how amazing our life is haha.

Don’t let me deceive you- there are still hard moments every hour. But I am training my eyes to focus on the blessings, and trust God to carry me through the hard. Sometimes complicated messes yield richest blessings.

Please be in prayer for my boys as we face summer surgeries. Please pray health over all of us as we prepare for Malachi’s Make-A-Wish trip in a few weeks, that nothing will prevent this from being a memorable, amazing time for him. His excitement is building each day and I can’t wait to see how he handles the week.

Much love,

Leah

Each year when April rolls around I start allowing my brain to process our summer plans. Sometimes I can hear the dramatic dum-dum-dummmm ominous music playing as I start planning the medical trips, and this week the internal music was blaring.

We aim to do our medical travels in the summertime so that Jake can stay home with one child while I travel with the other. Having a “home base” is a security blanket for us, as prepping all the supplies for extended travel can get stressful. In about a month we will be heading to Orlando for Malachi’s Make-A-Wish trip and we are so excited about the opportunity to travel to a medically complex friendly and handicap accessible place! What a gift!

Vacations are not a luxury we can often financially afford and the MAW foundation is covering all expenses, including meal vouchers and gas money! In addition to a stay at the village in Orlando they have also booked us hotel rooms for the route there and the route back so we can split the drive into two days.

Levi heads to Cincinnati each summer for his annual throat scope, lung cleaning, and airway trimming (if needed). This is typically a week long adventure, with pre-ops early in the week and surgery day Friday. He has a team of different specialists that coordinate in the operating room so they can each do their role while he is under anesthesia. The hospital doesn’t open the surgery schedule for July until May 1st so we call in April to be added to the wait list for those surgery spots.

Over the last 6 weeks Levi has been struggling to breathe at night. I initially thought it was a cold then, when it persisted, assumed it was allergies. His oxygen saturations at night are safe, but he wakes himself up several times a night with his inability to take a full breath, known as obstructive sleep apnea. This isn’t a brand new issue for him, and it was one we struggled with tremendously when he was a baby and required him to wear oxygen at night. But for the last few years his airway has been open enough to pass air through without issue.

My mom radar has been flaring, but I kept really wanting it to just be simple seasonal allergies. His breathing started to get a tad more noisy during daytime as well, especially with physical activity. Last week I took a peek in his throat and sure enough his tonsils are obstructing his airway significantly. This has been on the conversation list with the surgeon over the last few operating room trips and has always been planned as our next course of action if his airway gets too crowded, and as you can see from the photo the gap for him to breathe through is not large enough.

For a typical airway, removing the tonsils and possibly his adenoids (called a T&A procedure) is a gnarly surgery but relatively simple if there aren’t bleeding issues post op. Malachi had this surgery done when he was younger and handled it decently. But for Levi things are a bit more complicated. Anytime we do something significant with his airway we open up the potential for breathing issues and eating issues. If we open things too much, the possibility for food and drinks to make it into his lungs increases. We also worry that voice quality will be affected anytime we do trimming and repair, as his vocal cords are obviously still paralyzed.

I called his surgery team in Cincinnati and sent photos of his airway and they said we definitely need to schedule a T&A alongside his throat scope/lung cleaning in July. The goal is to try to make it safely until then, but if his breathing gets any worse we will have to make a trip up sooner for surgery.

So now in addition to our week in Cincinnati for pre-ops and surgery, we will now be required to stay an additional 10 days for him to be monitored post op. They are expecting him to only need to stay a night or two on the complex airway floor and continue his post op care somewhere close to the hospital.

We won’t have dates until the surgery schedule opens up, but the extended stay in Cincinnati prompted me to slide all of Malachi’s summer appointment at Vanderbilt (with the orthopedic and spine surgeons) to October, aiming for Jake’s fall break. MAW trip is May/early June and we will be taking the teens to youth camp in mid June and I felt like pushing more traveling appointments into our summer would make me cry haha. We have loads of local appointments over the next two months also for both boys (epileptologist, GI, neurosurgery, pulmonology, and so many more).

So in summary…this is a new prayer request. That Levi stays safe enough at night for us to push off surgery until July. The extra work his nighttime breathing requires is burning more calories than normal and he is having a hard time maintaining his weight. We are increasing his tube feeds at night, but with him waking up and gagging so much with breathing troubles that hasn’t been a successful solution. Prayers are also needed for Levi’s emotional resiliency as he faces a pretty big surgery experience and pain. He has so much medical trauma and staying the night in the hospital sparks those embers that are always present.

We also need prayers for health. If Levi does get sick on top of his already tight airway we could be a very scary place.

On to more happy and entertaining updates…

Malachi got a much needed haircut. One of my dear friends offered to help and we tackled it together here at the house. The older he gets the more titles he is requiring me to add to my medical momma resume.

Levi got to go on his first ever field trip, and the excitement he generated leading up to it was so much fun to watch. He was literally jumping up and down with joy the morning of.

Levi started weekly sessions with an occupational therapist at school. Since he started school in January we have seen some great gains. This week we were working at home on his fine motor details, and I had him trying to draw different things, step by step, on his magnetic drawing board. Most of the time his drawings are just scribbles with no recognizable features, but he worked very hard on this one with each new command and at the end he successfully drew “a sad man”. I was so thrilled, and he was so proud! Go Levi!

Malachi is quite a character these days. He has been swimming like a fish and riding his horse at therapy like a cowboy. I treasure my one on one time with him when Levi is at school. We are connected in such a unique and beautiful way and have so many deep conversations. He can’t speak a coherent word, but he communicates so beautifully.

He is full of opinions, frustrations, and laughter. I took a video of him after a soccer game last week and his joy was so contagious. The team was chugging water from cooler and Malachi thought the spectacle was pretty fun.

His seizures have changed this week and become more aggressive and longer in length. This is usually a sign that something is bothering him or causing him pain so I am watching him closely as we try to eliminate potential causes. He has some teeth that are about to pop through the gums, but it could also be something less obviously like an ear infection or something else that needs to be addressed. This guessing game is one of the hardest challenges to navigate. We are praying for health over his body as well leading up to his MAW trip!

This week I have been been caught in a mental loop. I keep flashing back to the many times that God has led me to the hard and asked me to trust Him. I can look back and see so much growth in my faith and my relationship with Him through each of those trials, and I can look back with fondness at the hard knowing that it led to so much beauty and strength.

But it still brews up those bubbles in my stomach each time I think about facing the hard and having to take that step towards it.

Isaiah 43:1-3 “But now, thus says the Lord, your Creator, O Jacob, and He who formed you, O Israel, ‘Do not fear, for I have redeemed you; I have called you by name; you are mine! When you pass through the waters, I will be with you; And through the rivers they will not overflow you. When you walk through the fire, you will not be scorched, nor will the flame burn you. For I am the Lord your God, The Holy One of Israel, your Savior;’”

In this scripture the prophet Isaiah was speaking to the Israelites and trying to offer comfort and encouragement. He wasn’t promising them it would be an easy journey, but God promised to be there every step of the way.

They would have to pass through the waters.

They would have to swim through the rivers.

They would have to walk through the fire.

And as scary and terrifying as each of those encounters will be in our lives, God’s words in this scripture are like water to my parched soul…

Do not fear.

I have redeemed you.

I have called you by name.

You are mine.

I will be with you.

The rivers will not overflow you.

You will not be scorched, nor will the flame burn you.

For I am the Lord your God.

As we enter a season of rivers and fires I am choosing to focus on God’s promises instead of the unknown. I expect the waters to rise to my chin and swirl rapidly past me as I fight against the current. I expect to feel the heat of the flames as they threaten me. I expect to be overwhelmed with uncertainty.

But I also expect God to be true to His promises. And the reminder that my future, and the future and health of my children, is already established and written by God brings me a peace that surpasses all of my understanding.

Philippians 4:4-7 “Rejoice in the Lord walkways; again I will say rejoice! Let your gentle spirit be known to all men. The Lord is near. Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus.”

Please be in prayer for our family as we enter the fun of these next few months as well as the hard.

Much love,

Leah

As I mentioned in the previous post, last week was spring break and it didn’t disappoint! The extra family time together was very much needed. The week was a busy one with several appointments to work around and family adventures in between.

With some surprise appointments added in we were not able to go to Medieval Times with Malachi but plan to find one when we go on his wish trip in a few weeks. To curtail any disappointment we gave Malachi a list of other activities to choose from and he settled on a day at the arcade. You are now looking at the Hungry Hippo champion at our local Dave & Busters! Malachi shot past the record on the game, winning 500 tickets which he subsequently turned in at the prize counter for a 65” bat. Not surprisingly, the bat has added a lot of humor to our home this week.

We worked hard to get the pool open for the season and throughly cleaned out. We drain the water a few times each year and it definitely needed it. The boys swam a few nights and both of them were so thrilled to be back in the water.

We tried new recipes and made some homemade pizzas, although my cheese guy was definitely sneaking some bites when he thought I wasn’t looking.

Right now our favorite evening activity is going to the soccer games! We are mid season with the high school boys so we are at the field 2-3 times per week. Levi loves the social side of watching the game and Malachi LOVES hearing his daddy yell while he coaches. Malachi will shout out too just to be like his dad but gets the giggles each time he does it.

This morning we attempted to get some Easter photos, but as always that was a difficult task.

Take a moment to look at that last photo and you will see how big Malachi is getting. He has gotten so tall lately and is up to 47 pounds. He cannot help at all with transitions or lifting and safely moving him is getting harder and harder to do. It has started the “next step” train of thought for creating a safe way to move him around at home using a lift system. I am not sure how much longer my body can tolerate the lifting without putting up an argument.

But oh, how I love this boy so much.

Malachi gets medications at 11:30 each morning and that happens to fall right in the middle of Sunday morning service each week. So after praise and worship he and I go to a room off the sanctuary where we can hear the sermon but I can administer meds and milk without being a distraction.

As we sat back in the room this morning the worship leader ended the service with the song “Because He Lives” and I immediately flashed back to the first Easter after Malachi was born. Jake and I left the Ronald McDonald House and went to our hometown for the first time since his birth two months prior. We wanted to attend church on Easter and I remember that I greatly underestimated how hard that trip away from the NICU would be. We were one hour away and I felt so frantic inside. Malachi was stable at the time but my mind kept going to the potential phone calls I could get at any minute from NICU staff.

That morning this same song was played for worship and I held back tears as I listened to the words. But the floodgates opened when we started this verse:

How sweet to hold a newborn baby,

And feel the pride and joy he gives;

But greater still the calm assurance:

This child can face uncertain days because He lives!

I actually teared up just now typing that verse!

Hearing those words again this morning made my heart swell with such gratitude to the Lord for the many things He has brought our family through. Ten years ago I would have never dreamed of the life we now live. But what a blessed journey it has been.

As you already know, we aren’t big on “traditional” anything for holidays. I am still trying to decide what I want each holiday to look like for our family, and I am particularly focused on not allowing myself to blindly accept the traditions of the world. Levi is a sponge this year and he has had so many questions about Christ’s death, like why people didn’t like Jesus and why He had to die. Early this morning I asked him some questions about Easter and hearing him reason through everything was such a joy to hear.

We did hide a few eggs around the playground for the boys to find and Malachi particularly enjoyed the hunt. His puppy Shiloh would retrieve the egg he got close to and drop it on Malachi’s wheelchair, much to Malachi’s delight.

If you look at that photo of Levi you can see some really big holes in the mulch around the playground. We had a bear visit on Friday night and he explored the playground for a good 5 minutes, leaving foot marks all over and mulch on the slide where he was exploring. I was pretty awestruck at the paw marks in the mulch!

We had left a cooler on the porch with some drinks after the soccer game and his curiosity was just too great. Here is a video for anyone that wants to see him:

Levi still continues to make us laugh with his antics. Two quick stories to give you a chuckle…

Story 1: This morning Levi kept raising his hand during the sermon. Jake leaned over and told him to put his hand down and asked him what he wanted to ask. Levi replied: “I wanted to tell him he is talking too long.”

Story 2: Levi was at a soccer game where a high school boy wearing an unbuttoned shirt tried to give him a fist bump. Levi was very uncomfortable and leaned over to our friend and told her that “that boy was showing his private parts”. The poor boy was mortified and we had to explain to Levi that boys showing their chest isn’t the same as girls.

Levi started school occupational therapy last week and I am excited to see what types of gains he can make between now and the end of the school year. We are still praying about the next step for him, whether it be another year in Preschool or moving him up to Kindergarten and potentially doing two years there if needed. I change my mind by the hour, so I am praying for clarity and guidance from God on this one!

In my quiet time this week I started reading Philippians again, one of my favorite books of the Bible. As I dug back into chapter 1 a verse popped out to me that I hadn’t given much thought to before.

Verse 12 “Now I want you to know, brethren, that my circumstances have turned out for the greater progress of the gospel,”

He was referencing his imprisonment for preaching the Word of God, so I can’t compare our trials on this specific thread. But I thought about the Carroll journey and the opportunity it has provided to share the gospel with so many others.

When we are in circumstances it is easy to spot all of the things we are being deprived of or missing out on. It is easy to make a list of all the hard side effects we are encountering due to our circumstances.

But what if instead of looking for the negatives to validate our sorrow we, like Paul, start to look for the opportunities that the trial can provide?

This verse has been on my heart for about a week and a half, playing in my mind as I look through the lens of opportunity. Then early this morning my phone dinged with a new message from one of Malachi’s former NICU nurses and the God timing of that message on the tail of me processing this verse was a beautiful validation from the Lord.

I have hesitated sharing this with you as I never want to betray confidence, but I don’t think this person would mind me sharing a brief except of the text:

“I couldn’t help but smile this morning when I thought of Malachi. Through God, that precious boy changed my life. I was so lost for so long….your faith was so foreign to me and then slowly things started to change. I began to see the beauty and purpose in all lives. I began to see His unfailing love for us….”

As I read this message I was overcome with emotion, recognizing that this life I have been BLESSED to be called into serves such beautiful purpose. Through our pain and our trials someone was introduced to God and they have become a new creation in Christ, sharing their faith with others. Like verse 12 says “Now I want you to know, brethren, that my circumstances have turned out for the greater progress of the gospel,”

This mentality comes at a cost. It requires putting aside our comfort, our ideals, our selfish desires and embracing the path that God places on. It requires turning out focus from inward to outward as we hunt for the opportunities in the moments of darkness and embrace them with a heart of obedience and humility.

I have to admit that I have not always handled circumstances as opportunity. And I have so many regrets for times when I allowed my focus to shift and excused it with justifications. But I am challenged this week to stay close enough to the Spirit that I simply cannot miss an opportunity to share the good news of God with others.

1 Peter 1:6-9 “In this you greatly rejoice, even though now for a little while, if necessary, you have been distressed by various trials, so that the proof of your faith, being more precious than gold which is perishable, even though tested by fire, may be found to result in praise and glory and honor at the revelation of Jesus Christ; and though you have not seen Him, you love Him, and though you do not see Him now, but believe in Him, you greatly rejoice with joy inexpressible and full of glory, obtaining as the outcome of your faith the salvation of your souls.”

Much love,

Leah

The Carrolls are healthy, happy, and on Spring Break! Levi and Jake both happened to have the same spring break at their schools. We plan to spend the week at home knocking out some projects and spending time as a family. It is always wonderful having Jake home and being able to take mental breaks from caregiving without feeling guilty. Malachi received tickets to Medieval Times for his birthday and we will likely take time to cash in on those this week as well.

All of our big medical appointments rotate; some monthly, some every three months, some every 6 months, and some every year. March is a delightfully boring month and the feeling of normalcy is very refreshing. In the next two weeks we will officially establish the dates for Levi’s Cincinnati summer surgery and then plan life around it. With Malachi’s Make-A-Wish trip in late May and youth camp mid June it is looking like a pretty action packed kick off for the summer.

Our indoor soccer ministries have ended and Levi is already talking about next season. Malachi looks forward to the league as well as he gets to help coach. We often let him participate in the drills and he always loves being included. This year I purchased a button whistle so he could push it to start the drills.

Life these days seems to be a continual pendulum of typical moments sandwiched with medically complex reminders. Levi has been dealing with what we assume to be seasonal allergies (typical) but they are making it extremely hard for him to breathe at night (not typical). I have been very worried about his breathing and spot checking him with the pulse ox at night to make sure he is safe. When he is aggressively working to breathe he burns more calories and also tends to gag and vomit more. We have had to focus more than normal on nutrition and hydration lately, pushing more nighttime feeds through the g-tube.

Malachi has settled into a new seizure routine at night that I could almost set a clock by. His brain is so fascinating. He is cutting some adult teeth which I suspect has something to do with the seizure changes.

He has been so happy lately and up to mischief. Earlier this week he pushed on his g-tube and popped it out, full balloon and all. I reacted briefly but then caught myself before I overdramatized the moment. Levi missed that memo and lost his mind that Malachi had popped his tube out. I watched Malachi’s face as Levi panicked and those eyebrows went up in amusement. I successfully got the tube back in, and Malachi went to work trying to pop it out again…hoping for the same reaction from Levi. A little brotherly love happening there.

This photo above is Malachi in his specialized car seat. It is a booster seat that has supports, but the best feature is that it swivels on a base so I can turn it to face the outside when I place him in it. From there I strap him in, swivel it to face the front again, and buckle him in with the seatbelt. The straps you see in this photo are for positioning purposes only, not safety. I am so thankful for inventions like this one that help make life a little bit easier. This photo was taken after his hippotherapy session this week.

Malachi has been very expressive and opinionated lately. And just so much fun to hang out with. Each morning he grins from ear to ear when I get in the car after dropping Levi off in his classroom. He loves our special time together. I took a video with him last week to share with you, and his eyebrows at the 30 second mark have made me laugh so hard I cry:

Malachi’s tastes have been changing a lot lately following the trend of a very typical 10 year old. He likes more complex movies and games, and like to be challenged by things. We play a lot of games throughout the day that I make up. The most recent one is a trivia game where I give him a quote and a multiple choice list of movies it could be from and he makes a guess. He is also wanting to watch movies with deeper storylines than the typical cartoons. Seeing these subtle changes is such a fun leg of the journey of motherhood with Malachi. Growth and progress, in any area, is beautiful to me.

Well, another blog entry wrapping up and all I feel like I have done is ramble about my kids! I think I am subconsciously kicking the can down the road right now, attempting to delay access the raw emotions that have been floating in my mind lately. I haven’t really processed what to write tonight so I am just going to start and let’s see where we end up.

If you asked me what one of the hardest parts is about being the mother of medically complex miracle boys I undoubtedly would have to say that it is controlling my thoughts.

We are in this war where our brains have to be engaged 24/7 (literally).

We are tasked with trying to control the uncontrollable.

To make every effort towards something we inevitably will fail at.

We can’t prevent suffering so we have to try to find ways to make it feel okay for our children and for our own hearts.

It is very easy to slip down a dark path of thinking, and I find myself looking over the edge at that path right now. But I have been down it often enough to know that I really don’t want to take that step and embark on it again.

So the way I deal with that? I deflect. I try to deflect all thinking other than the necessary. When I find myself venturing into dark waters I distract myself with something else to keep my mind from settling there. I am in a phase where I am scared to be alone with my thoughts right now because I feel my fragility. And I loathe vulnerability with myself almost as much as I loathe it with others.

But deflecting it is an utterly exhausting thing to constantly do. And I end up ending each day feeling so unfulfilled and empty.

I am due for a good, old fashioned embrace with reality. And, more importantly, an embrace with Jesus. It starts with me admitting that I am mentally, physically, emotionally, and spiritually unable to control my thoughts apart from Him.

2 Corinthians 12:9-10 “And He said unto me, ‘My grace is sufficient for you, for power is perfected in weakness.’ Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me. Therefore, I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ’s sake; for when I am weak, then I am strong.”

I have lost sight (as I frequently do) that this journey of motherhood is a calling from God. And through it I am able to do the work of God and be His hands and feet for my children. To love them the way that Christ does. And to allow His light to shine through the many cracks in this fragile earthen vessel.

Without the cracks that expose my weaknesses and my perceived vulnerabilities, Christ and His shining light through them would not receive the glory, honor, and praise of the hard that He has called our family to.

We were never called to perfection, but we are called continually to obedience. And when we live a life that pursues Him, when we are weak then He is strong.

So this week I am going to take time to embrace the weaknesses I keep trying to mask and hide from. I am going to confess my pride and arrogant attitude to the Lord, and allow my weaknesses to usher in His strength.

Vulnerability with the Lord is such beautiful worship.

In my quiet time with God this week I was reminded of the radical reliance we are called to have on Him. In the gospels we read about Christ sending out the disciples in pairs and His instructions to them were so specific: “And He instructed them that they should take nothing for their journey, except mere staff- no bread, no bag, no money in their belt- but to wear sandals; and He added, ‘Do not put on two tunics.’”

When I read this I couldn’t get my mind off of the last, very specific, instruction. Do not put on two tunics. I am a two tunic type gal- always wanting to prepare myself for what I might encounter- thinking that my work beforehand can prevent discomfort. But that is only my pride speaking.

Following God requires a level of trust that will make us uncomfortable at times. Just as these disciples sometimes we are called to things that we are not equipped or prepared in any form to do. But the faith that can grow from these callings with one tunic, a staff, and sandals can be life changing.

This week I am praying for the courage to do this calling with one tunic, relying on God to provide.

That was a jumbled mess. But I am praying that the Holy Spirit can speak a personalized truth to you within those words.

Much love,

Leah

I guess it is best to just rip the bandaid off and share with you that Malachi’s Make-A-Wish (MAW) plan hit a roadblock. The foundation wrote to us and shared that the safari place that we wanted to take him to has refused to work with MAW in the past at making experiences special for wish kids. They said they could still send us to Myrtle Beach and give us the money towards purchasing tickets there but unfortunately without the safari creating a special experience for Malachi it just isn’t possible. The facilities are not handicap accessible and if they aren’t willing to help make it happen for Malachi then it would be a nightmare to try to navigate.

So we went back to the drawing board with Malachi and revisited our previous list of options. And I spent hours upon hours trying to find similar experiences somewhere within driving distance. MAW suggested San Diego Zoo as they have partnered with them in the past for other wish kids but flying with Malachi is an unknown and we don’t want to introduce a pressure change to his brain and spark a week of seizures or shunt issues, especially with us being so far from home.

Malachi was obviously very disappointed, but I promised him we would find something even better! But the more I researched the more frantic I started to get, not completely sure that I could keep that promise.

Malachi has finally settled on a new wish and we are working to finalize the date. We narrowed it down to him getting a one on one meeting with a “real” dinosaur and him getting to interact with dolphins and get splashed by them. Malachi finally settled on the dolphins! With Malachi’s g-tube and positional requirements, getting in the water with them makes me a bit anxious but MAW is working with Sea World to create a close encounter that works for him.

Since his wish is in Orlando we will get to stay at the Give the Kids the World Village, a special resort for MAW kids. He will get to do three days at Disney, two days at Universal Studios (where hopefully he will get to meet the velociraptor), and a very special day at Sea World. They also offer tickets to some of the surrounding attractions, like Gator Land where he can hold a real alligator. When we presented Malachi with all of the potential things we could do on this trip his excitement grew and he is genuinely pumped!

He wants to see some of the shows at Disney (Lion King and Frozen specifically) and ride some of the rides. And the resort is fully accessible as well which makes life so much easier for the week.

Confessions of a control freak: If I am being honest with you all I must admit that the idea of this trip is overwhelming to Jake and I. We avoid crowds at all costs and the one day we tried at Disney in 2020 (pre-Covid) was a whole lot to handle. The potential for sickness is huge and being so far from our home hospital and medical supplies has been making my head spin. But I also recognize that these thoughts are fear based and I can’t let the what-ifs control Malachi’s quality of life.

Levi is exceptionally excited about the trip as well, and every time he mentions “Malachi’s wish” Malachi beams with pride.

Aside from recurring ear infections and minor sickness, Levi has been doing great. He was evaluated for services in the school (physical therapy aka PT and occupational therapy aka OT) and we met on Friday to discuss the results.

Just to do a slight recap….

Levi set off on his own journey at birth that also brought about his own timeline for things. In regards to milestones he has always been behind the norm. With his vocal cord paralysis he wasn’t able to eat/drink/speak on the same timeline as peers. His first five months was spent in an hospital with limited interactions and mobility, requiring lots of sedation meds after his many surgeries. And due to his brain damage resulting in cerebral palsy he was a bit slower to walk/jump/run, etc. We have never been worried about missed milestones and have just trusted the timeline that God has created for Levi. And we see every new skill as such a gift from God.

We enrolled him in a small private preschool in January and over the last two months we have been able to witness some areas where he could use some more focused attention. The school has a program to help struggling students and we have been trying to isolate the areas that we need to focus on. That led to a PT and OT evaluation.

On Friday we learned that there are some pretty significant deficits, which did not surprise us at all. In addition to the therapies I take him to each week, he will now start receiving services from OT in the school setting. This new knowledge from testing also shows us that he will need that extra monitoring academically and help academically when it is needed.

I am so thankful that we have found a school setting that is eager and willing to help come alongside Levi exactly where he is at and help him succeed in the regular education environment with support. He is incredibly smart and has so much potential/desire to learn.

Our Carroll family “six weeks of planned chaos” is wrapping up this coming weekend and we will be settling back in to our normal, wildly unpredictable chaos. The adult soccer league we run wraps up tomorrow and the kids league will play their final game Saturday. It has been a really busy and fun few weeks for me; I love serving and talking to kids about Jesus. Being able to combine soccer and Christ is such a treasure to me.

In the last few months I have seen such a change in Malachi that has brought about a wave of thankfulness in my heart. His seizures still happen 4-6 times a day, but he is also learning how to stay calm and not trigger more. I am not really sure that I can explain it well, but I will try.

Malachi’s epilepsy is triggered by discomfort. So any extra drainage from seasonal allergies, any positional body pain, any new sensory overload (lights coming on) used to trigger seizures. Every single morning for years he wakes up having a seizure. Literally every single morning. And most often those seizures would last until he would vomit. We keep towels in every bed and have become professional vomit catchers. It was a race against the seizure to get his body up and in a safe position to not smother himself and not aspirate his own vomit.

When we decided to enroll Levi in school I knew that this would add a stressor to Malachi with him having to get up early for the drop off. When we enrolled Levi, Malachi was waking up several times at night with seizures and requiring breathing treatments each morning. Our medical morning routine took at least 45 minutes just to get him in a safe enough place to administer medications without fear of him vomiting them up with another seizure. I was so worried that adding a forced wake up and car ride each morning would have a negative impact on Malachi.

But it seems to have done the opposite. Malachi has been learning to cope and I have been so impressed with his ability to adjust. We take Levi to school, usually without incidence, and he falls back asleep when we get back. He has not required his breathing machines as often since the new routine started and his flexibility in schedule has been such a game changer.

The future with Malachi always holds potential to intimidate me on any given day. But seeing him “act older” by learning to adjust has been such an encouragement to me.

I guess the best way to explain it is that Malachi is helping. He is trying everything in his power to work through this transition and having him “help” like that is new and amazing. And is such a reminder of how amazingly intelligent he truly is.

I have such a respect for my son. His thoughtfulness and his kindness, even when he is living a life that isn’t always fair to him.

This past week I celebrated my 37th (going on 90) birthday! A sweet friend took Malachi to the store and let him choose from a multiple choice list something to pick out for me. He chose flowers, something I have always loved to have in the house. Seeing his proud smile when he gave them to me was heartwarming and special.

This week as I prepped the lesson for the teenagers I studied several scriptures that contained prayers of Thanksgiving. As I read them I could feel my heart swelling with such reflection at the gift from God these last few weeks have been. And I don’t know that I often do a very good job reflecting that thankfulness and joy back to God. Or even conveying His goodness to others.

Psalm 145:1-7 I will extol You, my God, O King, and I will bless Your name forever and ever. Every day I will bless You, and I will praise Your name forever and ever. Great is the Lord, and highly to be praised, and His greatness is unsearchable. One generation shall praise Your works to another, and shall declare Your mighty acts. On the glorious splendor of Your majesty and on Your wonderful works, I will meditate. Men shall speak of the power of Your awesome acts, and I will tell of Your greatness. They shall eagerly utter the memory of Your abundant goodness and will shout joyfully of Your righteousness.

As I read this scripture I was challenged by it. Verbalizing the greatness of God is such an act of respect and honor to Him. And mediating on His splendor and wonderful works keeps my mind from drifting to the negative. As I read this scripture I felt more resolute to shout joyfully about His righteousness.

I pray that you look into our lives and see the hand of God over every aspect. The easy, the hard, the good, the bad. I pray that we are able to be a living testimony of His tender mercies, and I pray for more opportunities to eagerly tell of His greatness.

May we never miss an opportunity to let His light shine through us, His vessels.

Much love and thankfulness to God,

Leah

This has been a very busy two weeks for us with a lot of go-go-go. But some fun announcements for you all too!

As predicted, the GI doc wasn’t too pleased with Levi’s lack of weight gain. He eats all day long and is still getting at least 700 calories overnight with g-rube feeds but he can’t keep the weight on. Children with bilateral vocal cord paralysis burn extra calories with the increased work of breathing and with his recent sickness Levi just can’t seem to keep up calorically.

Side note- this was one of the biggest justifications the Cincinnati NICU doctors used for traching Levi. So we knew this would be a continual concern if his cords didn’t wake up by age 5. But with the help of the g-tube we can continue to supplement with high calorie formula when needed through life’s changes.

Malachi is continuing to gain weight and is up to 43 pounds! The doctor was pleased with his progress. He is just all around looking and acting older these days and it is fun to witness. He and I get some good quality time when Levi is at school each morning and it has been really great for our relationship.

Levi also went to the seizure doctor and required another blood draw to check his sodium levels. He handled this one better than most with the help of Child Life, but anything medical is still a traumatizing experience for him. Malachi giggled non-stop in the blood lab, especially when his friend the phlebotomist assumed we were there for him and had to be corrected. Such a brother thing to do.

The boys went to the dentist which is always a bit difficult for both boys. Levi tries to negotiate the entire time he is there, this time declaring that he only wanted to see women dentists, thinking this time he could avoid the final exam from the dentist after the cleaning. But there was a woman dentist working that day so his plan backfired. He is still easily bribed with egg salad and a water so we have that working for us.

Malachi was handling it like a boss until the hygienist started calling him Levi: “Great job Levi, open your mouth Levi.” He was so offended that he clamped down and developed an attitude for the rest of the visit. He even rolled his eyes at her a few times.

Levi is still loving school and is taking an interest in learning. He comes home talking about letters, numbers, and what his friends ate for lunch. He has been working on writing his letters, and his fine motor deficits are definitely there. This week he will be evaluated for occupational and physical therapy services while at school, which I am confident he will qualify for, and that will become a part of his weekly routine at school. We will also continue the services he is receiving outside of the school day, like his physical therapy on horseback.

He came home this week with a new Bible verse memorized and I am so proud of him and his strong voice! You can hear his stridor when he inhales, a clear sign that his cords are still paralyzed, but his ability to speak will never cease to amaze me. Here is a video:

Malachi has some big news to report! He has been chosen to receive a wish from the Make-A-Wish Foundation! MAW is a foundation that works to fulfill wishes for critically ill children in the United States.

We got word that we were referred a few weeks ago and started trying to come up with some ideas for his wish as we waited to find out if he would be approved. Thanks to the movie “Aladdin” Malachi had a framework already for what a wish was and he was so excited that he got to choose something to wish for.

And with his strong opinions just coming up with a wish has been quite the comical journey. Jake and I spent weeks tossing out ideas and before long he had a list of about ten he hadn’t immediately said no to. Here are some of the things that made the final list:

-The classic trip to Disney/Sea World

-a handicap accessible treehouse in the backyard

-putting walls around his pool deck so he could swim year round

-a travel trailer so we could go on trips and have all of his equipment and gear on hand

-Superhero for a day

-a Disney cruise

But then we did it…we came up with the ultimate wish! And Malachi immediately signed YES YES YES.

I started trying to think of all of Malachi’s favorite things and I kept focusing on his love for animals. His all time favorite animal at the zoo is the jaguar so I started googling and found a place in Myrtle Beach, SC that allows you to hold baby tigers/jaguars!

The more I looked into this place the more it screamed “MALACHI”! It is a 50 acre wildlife preserve that does safari and animal encounters. (From their website: All proceeds support the Rare Species Fund (RSF), which provides infrastructure, training, and support to international conservation programs worldwide. To date, RSF has donated more than $1 million and countless hours of professional expertise, engagement, and hands-on training to grassroots conservation program worldwide. These programs ultimately help to conserve tigers, lions, elephants, gorillas, chimpanzees, and many more species in their natural habitats.)

Guests interact with an elephant named bubbles, chimpanzees, baby tigers, monkeys, wolves, and more. We are calling his wish “Jungle Boy/Tarzan for the Day” and Malachi’s excitement cannot be contained anytime we talk about it.

We met with MAW staff and pitched the idea and they don’t think they will have any issues making this wish happen for Malachi. We are waiting on final approvals from his doctors and from the foundation then we will start finalizing plans for the trip this summer! We will keep you all in the loop as we continue to move through the process.

Watching Malachi deal with such a big decision reminds me of how amazing he really is. We have seen the mind of a typical 10 year old boy as we have thought about all of the possibilities, and seeing such excitement and anticipation has brought tears to my eyes. Waiting for his wish to come to fruition is going to be awfully hard for him (and all of us)! But what a fun thing for us to build excitement for over the next few months!

Jake and I went on our first date in February 2003, so this month marks 20 years of us being together. What a journey it has been!

Even when we were dating we could see the hand of God on our relationship; 20 years later I am even more convinced in the providence of God. A very summarized definition of the providence of God is “God’s providence is God’s caring provision for His people as He guides them in their journey of faith through life, accomplishing His purpose in them.”

We have experienced so much together over the last 20 years and have grown in so many unbelievable ways.

Jeremiah 17:7-8 But blessed is the one who trusts in the Lord, whose confidence is in him. They will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit.

I can look back over the last two decades and recognize moments when our shallow roots were exposed and had to dig a little bit deeper into the soil. I can recognize times when we feared the heat and we worried about the drought….and felt the effects of those things because we lacked confidence in Him.

And I have watched God sustain our family time and time again, reminding us that apart from him we can do nothing (John 15).

We have been given many blessings in this life together, but one of the greatest blessings is the need for complete and total reliance on God. We have been given a life we simply cannot do on our own. And getting to watch the faithfulness and sovereignty of God has been such a gift.

I know I use this scripture often but this week as I reflected on life I couldn’t help but be drawn to it again, seeing so much of our life in the words.

Isaiah 61 To bestow on them a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the Lord for the display of his splendor.

Today I want to remind you that God is able. He is able to turn your ashes into something beautiful. He is able to turn your mourning to dancing. And the hard journey of the roots digging into the soil can result in such a glorious story that points others to God.

This week we studied the story of Ruth and Boaz with the teens. If you need a devotion this week I encourage you to read through the book of Ruth from start to finish and find all the ways that ashes were turned to a crown of beauty, and how the dark parts of Naomi’s life (Ruth’s mother in law) and the dark parts of Rahab’s the prostitute’s life (Boaz’s mother) led them on a faith journey that lasted for generations…including the lineage of Christ.

May we always be open to the task of growing deeper roots, knowing we are a planting of the Lord for His splendor.

Much love,

Leah

Malachi is 10 years old!

After weeks of anticipation his birthday party day arrived and his excitement was beyond anything I have ever seen from him. He picked the theme, the guest list, the music, the dessert, and the venue. He started out a bit overwhelmed but after a few rounds on the rink he started to settle in. We were able to rent out the whole rink so the lights could be left on and wheelchairs and walkers could be on the skating floor.

He chose cotton candy instead of cake and he voted it as one of his favorite things that night.

But his absolute favorite part was when everyone sang Happy Birthday to him. We gave everyone a noisemaker and in between each line we blew our different instruments and Malachi just beamed with joy. Here is a video for you:

Jake and I had moment where we looked out at the crowd and couldn’t help but smile at the variety of people there. We had family, nurses, respiratory therapists, teachers, friends we met through the blog, friends we met in the hospital, other extra special buddies, church friends, youth teens, and so many other people come out to show love to our son.

And here is a video of Malachi zooming around with his favorite respiratory therapist/best bud that helped take care of Malachi in the NICU:

It was a day that we would have never been able to imagine ten years ago. It blessed Malachi and it also blessed us as his parents to be able to celebrate ten amazing years.

Malachi’s party hyped him up so much that he slept until lunchtime the next day…something he has literally never done in his life. He partied hard! When he woke up we celebrated Malachi’s actual birthday as a family and took him to Target to spend some of his birthday gift cards from friends. He chose some new books, “Hatchet” and “Holes”. His tastes are changing and he is devouring chapter books! He also got to pick out a dessert from a nice restaurant, which of course included chocolate.

And he opened up presents from friends, smiling from ear to ear.

Jake and I spent the day reflecting on the night of his birth. Each time we talk about it we uncover some new detail one of us didn’t know about the night. One of the oddest/hardest parts of that night was not being able to go through it together. We were separated initially for the ambulance ride and then I saw him very briefly before Malachi’s heart stopped. So the accounts from that night are two very separate ones.

It is hard to not get emotional when we talk about the night of Malachi’s birth. The unknowns from those months are still felt deep within my soul…the faces and mannerisms of nurses and doctors during hard conversations are etched into my mind. The good moments, the bad moments, the beautiful surprises, the devastating news.

This is somewhat unrelated, but keeps coming to mind…. 48 before Malachi was born we had taken the youth group to explore and spend the night in a cave two hours from our home. It is a giant cave with a main room the size of a gymnasium and trails off of it. So when doctors realized I had a placental abruption they assumed it was from an injury I sustained, like a fall, as if I were spelunking in a cave. They kept asking what I had been doing in the days prior and when I explained about the cave trip they automatically kept assuming I had injured myself caving. But what I kept trying to explain is that I didn’t do anything physical in the cave, just walked around the main room and open areas and supervised kids. I definitely didn’t fall and most definitely do anything that would have potentially hurt Malachi! I was such a nervous pregnant mom and followed the rules to the letter.

But assumptions were made and his paperwork at birth listed (and still does) that I had fallen so severely while caving I caused a placental abruption. I remember overhearing nurses saying things like “Why would she go caving when she was 4 months pregnant!” The emotional toll this took on me, carrying the label of being a negligent mom, really added an element of grief to those first few days and tinged my interactions with doctors and nurses.

But obviously there are way bigger things to focus on from that night.

This is the last photo I took before Malachi’s birth. It was the night before at a soccer banquet for our high school team. I was 24 weeks and wearing normal, non-maternity clothing in this photo.

As Jake and I shared our experiences again with each other we talked about the spiritual moments from the night. My encounters with God in hearing His voice multiple times, prompting me to actions that saved Malachi’s life. And Jake having visions of Malachi headed heavenward then being carried back down mid flight.

That night has changed our lives, it has changed our faith, it has changed our relationship forever. We are bonded in an indescribable way, and raising a miracle like Malachi has been such a gift.

Malachi is hands down the most amazing kid I have ever met. He has such a great sense of humor and such a tender heart. He offers such grace to me and to others, and he is always up for an adventure. He loves big and with all of his heart. And he expresses so much without speaking a word. He is such a pure soul and teaches me so much. I can’t imagine any other life or any other version of my Malachi. He is exactly the person God designed him to be, and he is such a gift to the world.

Levi ended up getting a random virus the Monday after the party that is known for 5 full days of high fever, sore throat, and headache. And sure enough he lasted the 5 full days. His fevers were reaching 103 even on fever reducers so we watched him closely for seizure activity. He wasn’t able to tolerate feeds for the week and lost a significant amount of weight but today he seems to finally be on the other side of the sickness. The boys both see the GI doctor for a weigh in this week so the timing is not ideal for a huge weight loss.

The pediatrician explained that the virus that Levi had was highly contagious and to expect everyone in the house to have it by the weekend. God must have had His hand of protection on us because not a single one of us caught it. I prayed very specifically over this, praying that nothing would stop the ministry work we just kicked off with our soccer leagues. And with help from God we were able to fully run those ministries and share Jesus with over 70 kids twice this week.

Levi missed a week in school and has been pretty devastated about it. This sickness was an emotional roller coaster for him with trips to the pediatrician, prescription eye drops, dangerously swollen tonsils for his airway leading to lack of safe sleep. He is so excited to re-enter the world this week!

Lately God and I have been doing a lot of talking. Although Levi had a relatively minor virus it still highlighted his medical complexities…the very ones I like to pretend he no longer has. There were scary moments for me this week watching him struggle to breathe due to his large tonsils. And there were moments I thought I was witnessing seizure activity but then he snapped out of it…but those moments still triggered all the emotions for me. I watched him struggle to maintain his weight and hydration, relying on the g-tube heavily….the g-tube I like to believe he no longer needs.

The nights were sleepless and the loneliness of this life started to hit me pretty hard. Each day requires me to pour out all of myself and being selfish simply isn’t an option. Even having hobbies and friends right now sometimes feels selfish. It is just such a strange and lonely world and I am not sure where that balance should be.

I read something this week about flamingos that really caught my attention. Did you know that pink flamingos lose their color when they become a mom and are raising their babies due to all of the energy they put into caring for their little ones? I realized this week that I have been a pale flamingo for the last decade. And I often don’t recognize myself in the mirror. And oftentimes I don’t realize how pale I am until I am surrounded by a whole flock of bright, vibrant flamingos. The starch contrast makes me self conscious, and it is sometimes easier to simply avoid the flock to avoid the comparison opportunity. But it can get lonely.

Anyway, back to God and I…

Over the last few weeks I have been doing a study with the youth about the ripple effects of our faith in trials. We have been looking at different characters in the Bible and watching how their moment of faith impacted generations and generations.

For example, the Hebrew midwives, Puah and Shiprah, acted in faith and it rippled through the Israelites sparking the courage of Amram and Jochebed (the parents of Moses). Then their trial and act of faith of putting Moses into the basket impacted Miriam and Aaron. Etc, etc, etc.

We have been created circle diagrams and watching the ripple effects of our small faith choices.

This week God pointed me again to one of my favorite stories in John 9 about Jesus healing the blind man:

As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.

After Jesus spoke these words he healed the man. Later in the chapter the Pharisees investigate this miracle, not believing that the man was truly blind before Christ’s encounter with him and they call in the parents of the man for questioning.

But when I draw out the circles of this blind man I can’t help but wonder what impact his lifelong trial of blindness and sudden healing had on the man’s parents. I can’t imagine getting to witness this magnitude of a miracle in my son and the life transformation it must have been for all of them. What a beautiful picture.

But as those circles keep rippling from this one man’s disability and healing I find that I too would be a circle in his story. Had this man never been born blind and required a Savior to heal him and make him new I would have never fully recognized the truth that sometimes our trials are in our lives so that God’s power can be seen through them.

I think back on Malachi’s life and the ripples it has caused in my faith. And I watch as those ripples flow into more circles each and every year. Each and every hospitalization. Each and every new encounter with new friends.

And I see it.

Malachi has yet to receive his full healing. But ‘the works of God’ are most definitely being displayed in him. And I am so thankful to be raising a chosen instrument to proclaim God’s name. And I am honored to be a testimony bearer for the ripples this amazing ten year old boy is making in the world for the Lord.

May we all have the humility of heart and the eyes to see beyond ourselves and recognize the impact we can have on others when we live by faith.

Alright, off to bed. Thanks for checking in on our family. I am still adjusting to posting every other week, and truthfully I am not a fan! It is too much to remember. But I am also a creature of habit, so I need to give it a bit more time to make sure I am not just bucking change.

Much love,

Leah

This is a pretty special week for our family as Malachi reaches double digits! He turns 10 years old on Saturday and he gets the giggles each time we talk about it.

Malachi is starting to look like a preteen and has hit such a growth spurt lately. We meet with the GI doc in a few weeks and I am so curious how he will feel about the very apparent changes we are seeing in both boys.

There are a lot of things Jake and I haven’t mastered as parents and birthdays are one of them. We have always tried to make the day special for the boys, letting them each choose what we do that day, but we have never hosted a party for either of them. There are lots of reasons for this but the biggest factor has always been the germs that swirl around this time of year. The amount of birthdays we have had to spend in the hospital has also definitely made parties hard to focus on.

But with this being a biggie we decided that this was the year that we would try to make one happen! Malachi has been planning out the entire event using his yes/no sign language and it is absolutely a Malachi style party. I can’t wait to share photos with you on the next post!

As I reflect on the last decade with this beautiful boy I can’t help but feel such pride. Malachi is truly amazing. He has endured so much in his life, and does so with a mischievous smile on his face. We are so incredibly blessed to get to witness the world through his eyes and do life with him. Watching God’s story unfold in his life has changed me in so many profound ways. I am going to be hit with all the feels this weekend as we celebrate so I will save those ramblings for the next blog.

And little Levi is changing every day. He looks older, acts older, and his vocabulary and sentence structure has changed since he started school. His imagination has ignited even more and just sitting back and watching him play is such a gift.

He has been dealing with some ear infections lately which has triggered his medical PTSD. This anxiety not only affects the visit to the doctor but also his behavior at home after. When he can’t control his medical issues he tries to control everything else around him. We are having a lot of nighttime issues with separation anxiety and he is waking up at least a dozen times each night to make sure I am in the room. Finding that balance of supporting him within his anxiety and not enabling it has been hard to navigate.

The boys have been on all sorts of adventures since the last post! I am going to rely on photos to help summarize some of the fun they’ve been having.

Every November through January Jake and I make a conscious effort to slow life down a bit and reset. When February comes we start what we call “6 weeks of chaos”. It is very much self-induced chaos so we are very cautious about complaining, but all of our ministries merge for a 6 week span each year.

Starting next week here is the Carroll schedule:

Sunday: church in the morning, teen Bible study at our house every other week. We cook for the teens, feeding about 35-40 of them, which usually takes up most of the afternoon and evening. This also means we take our house apart, moving furniture and setting up chairs for everyone. And the cleanup after is always immense, but I find myself able to do these chores with a smile on my face. Doing work for God makes even the dishes fun.

Monday: Jake runs soccer practice for the high school team after school until 5:00. Then our adult and teen indoor soccer league plays games at the church from 6-9. We created this league ten years ago as a way to raise money for the teens to go to youth camp and usually have 60-80 players come out. I referee all the games, which is sometimes a nice break from caregiving.

Tuesday: Jake runs soccer practice for the high school team after school until 5:00. Then Leah runs practices for the children’s indoor soccer league from 5:30-7:30. This is the second year we have offered this ministry and we have about 75 kids registered this year! I do a devotional with the kids in the middle of each practice and game and genuinely love the discipleship it offers. I have about 15 people who help with this league and I genuinely couldn’t do it without them.

Wednesday: teach church youth group from 6:30-8 then a small group Bible study at our home from 8:15-9:30.

Thursday: hang onto your hats…this one is the doozy. Jake runs soccer practice for the high school team after school until 5:00. Then Leah runs practices for the children’s indoor soccer league from 5:30-7:30. Then the adult league runs two games from 7:30-9:00.

Friday: Bible study at our house from 8-9:30

Saturday: Children’s indoor league plays their games from 9:30-12:45. We bring in Dunkin Donuts and concessions for the youth to sell to raise money for their camp and clean up after, so our day starts a little sooner than that and ends a little later! Then men’s Bible study at our house from 6:30-8:30.

After 6 weeks we drop all of the indoor soccer from the list above and I team up with Jake to help with the outdoor high school team. We have been coaching together since before Malachi was born and it is such a great way for us to form friendships with a demographic of kids that will never step foot in a church. Many of the teens we meet through soccer end up coming over for Bible studies!

The boys love to tag along on these adventures. Malachi loves listening to soccer games and Levi loves finding new friends to run around with.

So why bore you with the details of our busy season? I share all this as a testimony for the provisions of God. His provisions in our energy, our health, our contentedness in marriage and ministry together. God gives Jake and I a spirit of likemindedness, each of us being able to stay focused on the goal of the chaos. We genuinely feel like God is calling us to run each of these Bible studies and ministries. And we are simply following in obedience, trusting God to sustain our health and our family.

Whenever we go through weeks that require more of us than we are able to give I have to stay focused on God and His Word. These last few weeks I have been feeling the pressing need to abide in Him in preparation, and in that preparation I have been drawn so much to the Israelites in Exodus and specifically their shortfalls. I think I am drawn to them because they reflect so much of my heart when I am being challenged and stretched by God. It is the ugly, fleshy side of me.

I start to complain. I start to get angry with the others around me. Just like my Levi grasping for control when he feels unsure, I too do the same with God.

But this also a season of manna for our family. It is an opportunity for us to evaluate how much we truly trust Him.

In Exodus the Israelites start grumbling about the lack of food in the wilderness. God hears them and responds.

“And the Lord spoke to Moses, saying, ‘I have heard the grumblings of the sons of Israel; speak to them, saying, At twilight you shall eat meat, and in the morning you shall be filled with bread; and you shall know that I am the Lord your God.’” Exodus 16:11-12

That last sentence is so significant to me. God’s provision wasn’t the result of their complaining. It was a demonstration of His power and His love for His people.

Exodus 16:13-21 “So it came about at evening that the quails came up and covered the camp, and in the morning there was a layer of dew around the camp. When the layer of dew evaporated, behold, on the surface of the wilderness there was a fine flake-like thing, fine as the frost on the ground. When the sons of Israel saw it, they said to one another, “What is it?” For they did not know what it was. And Moses said to them, “It is the bread which the Lord has given you to eat. This is what the Lord has commanded: ‘Everyone gather as much as he will eat; you shall take an omer apiece according to the number of people each of you has in his tent.’” The sons of Israel did so, and some gathered much and some little. When they measured it by the omer, the one who had gathered much did not have too much, and the one who had gathered little did not have too little; everyone gathered as much as he would eat. Moses said to them, “No one is to leave any of it until morning.” But they did not listen to Moses, and some left part of it until morning, and it bred worms and stank; and Moses was angry with them. They gathered it morning by morning, everyone as much as he would eat; but when the sun became hot, it would melt.”

There are so many profound lessons in this scripture. But I want to focus on my favorite one…

God calls them to take just enough to sustain them for THAT day. God wants us to trust that each morning there will be bread to fill our bellies and meat each evening to provide our energy for the tasks He calls us to.

And in their arrogance some attempted to take more, doubting that God’s promises would remain steadfast. How many times do we offend God in this way? We reserve some of our energy, our resources, our time instead of trusting God 100% to provide exactly what we need to carry us through.

Do we truly trust God?

Last year during our “6 weeks of chaos” God kept our family healthy and functioning at 100%. That alone was such a hug from him, knowing that we are exposing our family to the germs of hundreds of new people each week during cold and flu season. We are praying that this year God’s provisions continue…

But what if this year is different and we contract something that puts Malachi back in the ICU?

We choose to believe that even that holds a purpose. And maybe it is an opportunity for someone else to step into our ministry roles and can become a catalyst for God to work through.

Part of faith is believing that even the valley moments in our lives are ordained by Him. The devil would love nothing more than for our fear of the valley to hinder us from allowing God to uproot and guide us to new things.

In this challenging season for our family we are given the opportunity for a faith marathon. There will be lots of sore muscles, lots of temptation to compare months with each other, and lots of sacrificing. But in return we are given the chance to build faith endurance from trusting God. We are able to witness the manna each morning and the quail each night, knowing that those gifts from our Heavenly Father are just enough to carry us through another 24 hours.

I am officially starting to drift, so I think it is time to wrap up. Sometimes I feel like I am writing disjointed jargon on here, but I trust that God can pretty it up and speak through my imperfections!

Please be in prayer for Malachi, that his birthday party continues as planned. I have this (very rational) fear that something may come up and he won’t be in a good enough health to enjoy his party. Seeing him disappointed is one of my least favorite things in life- he feels with all the feels. And please pray that God continues to prepare our family for the thick we are about to enter.

Much love,

Leah

This week I have been reminded time and time again about the faithfulness of God. Oftentimes these reminders happen in the dramatic seasons of our life. But I am starting to recognize that the reminders of His faithfulness in the slow and mundane parts of our life hit a different way.

Jake had a rare opportunity to go out of town this week with a friend, which is always a needed break and blessing. This carried a measure of guilt for him but we both recognize the need for small breaks. We don’t get to take many family trips together for several reasons, one of which being the time and finances we would use for a family trip is usually spent on our annual summer surgery trips for the boys each year. Levi has to spend a week in Cincinnati for his surgeries each summerand Malachi spends time at Vanderbilt. We add in “extras” to these medical trips to make them more fun and a little less medically focused for the boys and count them as a vacation. We also take the youth to camp each summer, blocking out another week and money towards a rental house for the boys and I. Vacations for fun tend to fall down on the priorities list and then we usually talk ourselves out of them due to the complex travel arrangements that we have to make.

So when Jake’s friend invited him on a trip I heavily encouraged him to take the opportunity! And with much hesitation he agreed. The boys and I cleared the calendar of all extras outside of our regular therapies and appointments and focused on taking each day at a time. Sometimes I bite off more than I can chew, and with Levi’s new school arrangements I was afraid that sleep would be even more rare.

There are so many factors to parenting these boys alone. Physically: it is a big ask of my body to lift and maneuver Malachi for several days straight. This week was no exception. This morning I noticed my hands quivering with physical exhaustion. Mentally: when I am unable to have a defined “break” my medical mind starts to struggle. Dosing for medications, medication schedules, feed times, charging feeding pumps, ordering supplies, and filling prescriptions. It really is a full time job caring for one medically complex child, let alone two. Levi’s seizure medication is in short supply so we had to locate a pharmacy that could get some for us…I had half a dose left in the bottle when we finally got our hands on a refill. Self-Care: this becomes an add if and when I can sneak in a shower or a nap. We don’t like to leave Malachi unattended due to his seizures but dragging him around the house with me is a challenge. And I don’t dare take a nap with an awake Levi in the house haha! He is just too…creative.

We know all of these things, so leading into the week I formulated a plan and a schedule to try to preserve as much as possible.

Each morning we dropped Levi off at school and when we came back home I put Malachi in his comfy chair in the living room. And every single morning, like a true gift from the Lord, he fell asleep for at least an hour. The first morning I couldn’t believe it. Malachi will sometimes try to take a nap, but every single time he naps he wakes up a few minutes later with a very aggressive seizure. But this week he took a nap every morning while Levi was at school and had zero aggressive seizures. He would wake up smiling and ready for the day. Malachi is almost 10 years old, and so this precious gift of another hour of sleep had to be orchestrated by God. I cashed in on the opportunity, sleeping on the coach next to him and holding his hand in case he went into his aggressive seizures.

Around lunchtime we would pick Levi up, listen to the adventures from his day, and head back to the house where Levi would crash and nap for at least an hour. Y’all. I couldn’t believe that the blessings just kept coming. I was able to accomplish so many things this week! A week that I had described as a survival week turned into one of the most productive ones in years.

I can’t tell you how many times I smiled and thanked the Lord. Each tiny, seemingly insignificant blessing felt like another hug from God.

Now don’t let me fool you- it was a challenging week. But when challenging weeks have God moments mixed in they just don’t seem so bad. Jake came home late Saturday evening and it has been so refreshing having the team back together again. We function so much better together!

Levi is still thoroughly enjoying school. I know I mentioned already that he is a sponge, but his memory is unbelievable. 7 days into school and he could fully recite the pledge of allegiance to the flag and the the Bible. I was so shocked when he just started reciting it one afternoon!

There are several reasons that we placed him in this specific school but one of the biggest ones was to see if he is ready and capable of handling kindergarten next year. Levi has lots of complexities but in so many ways he is very typical. So our hope is that he is able to remain in the regular education setting with supports in place if they are needed. But we also recognize that there are many unknowns with Levi’s brain and the older he gets the more we see the damaged areas affecting different parts of his body. He is losing vision in his eye due to this brain damage, he has cerebral palsy in his ankles and core, and he has some fine motor limitations. We needed to find a school to partner with that was willing to go on this journey with us and not be quick to categorize or label Levi.

Ugh. I feel a rant coming on. I didn’t intend to do this, so feel free to fact check me but this is a quick education of a dark corner of special education.

I was as a special education teacher before I had Malachi and there are a lot of unethical things in many school systems. In my own experience in Georgia I have overheard directors mentioning that we need to have a child evaluated for another specific disability so we can categorize them as “Multiple Disabilities” and potentially change their services or setting to a self contained classroom which collects more more federal funding for the school system. This is not a child centered approach.

When you incentivize by linking funding to disability categories/settings it leads to over-identification and it has potential to override what the student’s actual needs are. It also encourages a more restrictive environment for the student rather than letting their needs drive the decisions. Let me do a disclaimer here and explain that not all school systems have this unethical mindset! But it does exists in the public school world and it is important that you be aware of it if you have a child with extra needs.

Each state has a funding formula for exceptional students. For example, in Tennessee the base amount of federal funding per student in a public school is $6,860. With each additional need for a particular student that number increases. This extra money is assigned for special education for the county but doesn’t have to be used specifically for him within that special education program.

This was taken from an article I found online to help you understand the potential. Here is the link to the article if you want to read it in its entirety: https://www.tennessean.com/story/news/education/2022/03/14/disability-advocates-new-tennessee-school-funding-formula-negative-impact/7035362001/

The current formula proposal allocates additional percentages of funding on top of a base funding of $6,860 per pupil for each of ten unique learning needs,including:

• 15% for students with disabilities who receive consultations or direct services that equal less than one hour a week
• 20% for students with disabilities who receive less than four hours of direct services a week, or for students with characteristics of dyslexia or for English language learners in Tier 1
• 40% for students with disabilities who receive direct services for less than nine hours a week
• 60% for English language learners in Tier 2
• 70% for English language learners in Tier 3
• 75% for students with disabilities who receive direct services for up to 14 hours a week
• 80% for students with disabilities who receive up to 23 hours a week of direct services
• 100% for students with disabilities who need an aide or paraprofessional for at least four hours a day
• 125% for students who receive direct services for 23 hours or more a week or who are placed in a self-contained classroom or environment
• 150% for students with disabilities who are placed in residential services or are hospitali or homebound

Federal law mandates that each child with exceptional needs should be placed in their “Least Restrictive Environment” with proper supports and too often that is not done, for convenience sake or to preserve funding that will need to be paid for the extra support personnel in the general education classroom.

For reference, (if the article above is correct and the proposal was accepted as is) Malachi falls in to the “self contained classroom” category, so the government would give the school system his base $6,860 (standard for every non-disabled student) + $8,575 due to his classroom environment. So in public schools a child like Malachi gets $15,435 per year towards his education. Again, this extra money is not directly used for Malachi alone but rather goes into the special education fund for the county.

Why is this important to know? When we originally started school with Malachi several years ago we asked about a paraprofessional for him, a one on one aide that could help him with all things. We were told by the previous director that Malachi was not medically complex enough to require that level of care and that they felt like the ratio in the classroom of student teacher was enough to adequately care for his needs. But in all reality, it was not. This funding is provided so kids like Malachi can get the extra services they need, including the staff to help make that happen. Please please please advocate for your child if you don’t feel like they are being supported in their educational setting.

Okay, rant over. Back to momma Leah.

We chose to place Levi in a private school environment that does not receive any funding for his exceptionalities. We wanted an unbiased, appropriately focused opinion of what he is capable of doing with the proper supports. We applied for a local grant that was able to pay his tuition for the remainder of the year, which was a surprise blessing.

This week his school sent home his ISP (Individualized Student Plan; very similar to the IEP system that public schools use). And on the front page is this sentence: “(School Name) recognizes that all individuals are ‘fearfully and wonderfully made’ by God (Psalm 139:14). With this in mind, (School Name) is committed to partnering with the home to develop the spiritual and academic growth of all students.”

And underneath that section: “This is not a legal document. It represents a good faith effort on the part of this team to develop a plan for this student, with the intent of helping him progress to the best of his ability within (School Name) environment.”

When I read this I was overcome with emotion. This is such a pure and unadulterated approach to special education. No motivation other than wanting to come alongside the child and help him succeed.

Reading this affirmed my decision to send him to this particular school. Both of my children are fearfully and wonderfully made. They are so perfectly unique. And I love watching them become exactly who God designed them to be.

Watching God carry our family this week in such a seamless way reminded over and over again about His faithfulness. It reminded me that I am seen and I am loved. And this awareness flavored my week in the most beautiful, satisfying way.

May we have eyes that look for God in the mundane moments as hard as we search for him in the fire-filled ones.

And just as a quick reminder, you will not see a post from me next week. I will be cutting back entries to every other week and I didn’t want you to worry that something was wrong.

Much love,

Leah