Our Thanksgiving week was an absolutely wonderful one! We had several friends stop by to see the boys this week, many of them haven’t had the chance to see them in several months. Malachi was giddy with the company and Levi morphed into the tour guide/boss/man of the house.

Levi has been hijacking my phone and taking about 300 pictures a day. Most of them are of his foot but every now and then he has a hidden gem in the mix. This photo was this week’s.

Our very special friends that babysit the boys for us came by Tuesday and let Jake and I sneak away for a date night. It still feels so unnatural and alarming to be out and about without either child, but also so refreshing to be responsibility free for a few hours. Even when I am sleeping I am listening for seizures, feeding pumps, and vomiting so there never really is a chance to shut off the mama medical brain. I cherish those breaks.

Jake’s family came into town this week and the boys loved having the company! Malachi and Levi spent most of the week playing with cousins and fighting over the attention of grandparents. And they slept GREAT this week because of it.

I am still working as the church secretary but we don’t have established office hours anymore due to COVID. I do most of the duties from home, and end up in the office 3-4 times a week for quick tasks. When Jake is off I take the opportunity to go to the office for a few hours and make sure everything is running as it should be.

And now we are on to Christmas season! As each year goes by Jake and I continue to evaluate what we want Christmas to look like for our family. One of the non-negotiables each year is doing a family Christmas service project. I always want my boys to prioritize giving to others in need rather than focus on “getting”. In year’s past we have been in hospitals for the holidays and seeing and experiencing the darker side of holidays has been an eye opener. We typically try to come up with a project for the local NICU but this year we have such a unique and special project picked out!

A few months ago I had a high school friend reach out to me asking about the possibility of getting a wheelchair for a 5 year old boy with special needs in a remote village in Uganda. The more I researched Uganda the more this story tugged at my heart. If you want to have a heart check moment read this article for reference:

https://www.irishtimes.com/life-and-style/health-family/the-hidden-disabled-children-of-uganda-1.4370676#:~:text=Disabled%20children%20rank%20among%20the,out%20of%20sight%2C%20or%20worse.

This little warrior boy seems to be very loved by his family, and they do not currently have any equipment or resources to help with his care. Jake and I spent some time in prayer on how to help, and we feel very strongly that this is meant to be the Carroll Christmas project for 2020.

There are a few details that complicate things slightly. We can’t ship anything overseas to him, so the equipment needs to be compact enough for our missionary friend to take it with her on the next trip in February.

The wheelchair specifically has to be compact enough to fit in the trunk of taxis or they will refuse to transport it. It also has to be able to go off road and we will need to send extra tires for the rough terrain.

We have made our wish list and as we always do we want to open it up to you all as well if you feel led to donate towards a specific item. You can message us for an address if you want to send a check, and paypal is always an option at jacobandleah@gmail.com

So far we have fully funded a bath chair, a portable seating option, an exercise ball, and some small toys that will be helpful with his cerebral palsy limitations.

We are still working to fund the wheelchair stroller and have $100 so far.

We are also hoping to purchase this tree branch swing for him as we know how much Malachi enjoys swinging!

On the cheaper side we have Easy Holds to help him with utensils.

And the final item on the list is some of the super cool bibs we have custom made for Malachi! Our Uganda buddy is also a drooler and we hope it will help cut down on outfit changes and laundry.

There is no pressure to donate, but we thought we share this unique opportunity with you all! I love that we can enrich the quality of life for this boy and his family with some simple pieces of equipment. We are also planning ways to make sure this family realizes how much God loves them through this project.

I have a love/hate relationship with the phrase “quality of life”. It has come up in conversation in meetings with doctors more times than I care to count. For each child it was focused on different things, but I can tell you that with both boys the phrase was used with a negative connotation.

The phrase almost had a haunting nature at the beginning of our journey with Malachi, playing in the background of my thoughts during each big medical set back.

For Levi the phrase was used as a weapon by dozens of doctors and nurses as they pressured us towards putting a trach in Levi’s airway. We were told that it would enhance his quality of life.

Even typing that last paragraph caused reflux to brew up in my throat. I guess the love/hate relationship I just mentioned is actually more of a hate relationship.

It took me many years to realize that “quality of life” is so unique to each child and family. Someone could easily look in the windows of our life and pity us for our trials. They could deem Malachi’s quality of life as very poor. But when I see Malachi, I see one of the happiest 7 year old boys I have ever met! He is loved and cherished, and with those two elements combined I can’t imagine anyone’s quality of life being poor.

And I look at Levi, sweet and resilient Levi who is thriving. Yes, the journey has been a hard one with over two dozen surgeries but oh what an amazing quality of life he has!

We have learned that it isn’t the diagnosis, the outcome, or the journey that dictates quality of life. Instead it is all about the tiny, beautiful moments you collect along the way. When we put so much value and stock into “normal” we put blinders on for finding quality in differences.

Different can be so, so beautiful!

Psalm 139:13-16 “For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.”

I like to take this verse and insert my children’s names into it to remind them of how special they truly are. Lately I have been talking to Malachi about how unique and amazing he is, and watching his eyes brighten and a side smile form when he hears those words makes me tear up.

My prayer is that each of us develop eyes that can find “quality of life” in even the darkest of situations. And when we can’t easily find it, I pray that God will give us the courage and abilities to create it, always seeking to enrich the lives of those around us.

Much love,

Leah

Hallelujah, Jake is on break for Thanksgiving! Our family dynamic changes so much with him home and we get to tag team parenting.

Speaking of turkey day, I left the house early this morning and rounded the corner of our road to find a flock of 14 wild turkeys in the road. Watching turkeys fly is highly amusing and it made me smile thinking about how grateful they must be to have survived Thanksgiving 2020 without ending up on a table. I never imagined I would be rooting for a group of wild turkeys, yet here we are.

Ahh the majestic flying turkey. I snapped a picture to show Jake and seeing their awkward bodies trying to fly brings me joy, so I can only assume it will make you chuckle too. By the time I got my camera out over half had cleverly escaped into the woods.

I have come to the conclusion that if I were a bird, I would most definitely be the turkey in flight- awkwardly trying to act like I have the skill mastered but very clearly stumbling and falling my way through life.

Levi is changing by the minute. He is rounding out into a perfectly chubby little boy and he has such a creative mind. The weather is getting cooler meaning we are spending more time in the house, which really gets Levi’s creative and mischievous juices flowing. More on that one in a minute.

He has been taking it upon himself to do regular temperature checks and it oddly good at it. Whenever I ask him what it says he tells me “three”, so I guess we need to work on reading numbers haha.

And Malachi is perfectly content when we are all home together as a family. He likes going on drives and adventures, but is also happy at home watching a movie. Malachi is also growing, and with his increase in diaper sizes we are having trouble finding pants that fit him well. We ordered some adaptive pants for him from Kohl’s special needs line and I figured I would share it with you in case anyone else reading this could benefit.

They have velcro at the bottoms for easy AFO access and they have zippers on each hip so we can get them over his bulky diaper. They also have a higher waistline and roomier booty to accommodate a diaper.

This week I was feeling the walls closing in and took a drive up the river road to a small town in Georgia. We visited the apple orchard and went for a walk down a small town street, making sure to keep our distance from everyone else. Levi’s orthotics came in the mail and it seemed like a good opportunity to try them out.

But the most exciting adventure this week was an early Christmas present from a relative- a full size trampoline! We told Malachi about it when it was ordered but told him he had to keep it a secret from Levi- a job he took very seriously. When it arrived he was giddy with excitement, patiently waiting for daddy to put it together but oh so excited.

Since he is the oldest we let him get on it first, and as we walked down to the basement to go out to it Malachi was giggling with sheer anticipation. He has never been on an actual trampoline so we weren’t sure how things would go, but his reaction just blew us away.

He LOVES it. He engages all of his muscles in the sitting position with very limited support from one of us, and holds his entire body upright in a way we have never seen before. We didn’t even know he was capable of sitting like that. He loves when you really get him flying off the surface, enjoying the rough play.

Here is a sweet video of Malachi mid bounce:

The weather here has been beautiful so we are hoping to get a few more weeks of trampoline time before the cold weather hits.

Alright, now back to the mischievous Levi. There are many times throughout my day where he makes my heart race with his antics. Like this week when he shoved two goldfish crackers into Malachi’s mouth which he inhaled deep into the back of his throat before I could grab them. It was a scary few minutes but all is well.

But then there are times where he truly warms my heart. This week I heard him saying “Go” while I was cleaning the kitchen and I glanced over the couch to see him playing with Malachi. I filmed it to show Jake later, so I will share the tender moments with you:

He was playing catch with Malachi the same way Jake and I have modeled time and time again. My heart swelled with pride watching him show kindness to Malachi and engage him in a game. I took this video and praised Levi for being so sweet before I went back to doing the dishes.

But as I did the dishes I felt the grief start to creep in.

This week I spoke briefly with a college class in a Q and A special needs parenting session and one of them asked the question: “How did you grieve when you found out that your children would have challenges?” It is a great question, and takes some deep processing to pinpoint the answer.

For Levi we most definitely grieved when we received the diagnosis. We just had so many built up expectations for normalcy and when our steps led us off that path we grieved intensely.

But for Malachi the grief didn’t start manifesting until several years in. We just felt so lucky that he survived against all odds…instead of grief we felt so incredibly blessed! And we still feel so blessed to have such amazingly unique kids.

But the grief started sneaking in after a few years as the reminders became more obvious that our journey wouldn’t match everyone elses.

The grief tends to hit at such weird times. As I did the dishes thinking about Levi’s game with Malachi I started to think about future conversations I will need to have with Levi about his brother. Will he ever mourn that his brother can’t throw the ball to him? Will he ever play the comparison game with his friend’s siblings and start his own journey of grief over the differences?

After dwelling for a few minutes I realized how foolishly I was wasting my time imagining something that may not ever be an issue. The devil is a thief, and he loves to steal my joy from beautiful moments like this one.

And as I often do, I had to make the decision to turn my dark thoughts into an opportunity to grow closer to the Lord. Whatsoever things are true, noble, right, pure, lovely, admirable, praiseworthy, excellent…those are the things God’s Word tells us to think on.

I started to think about those future conversations and realized that Malachi will help bring the Bible to life for Levi! When we talk about the lame man, the blind man, the mute man- those characters will be brought to life, and their miraculous healings will speak so much to his little heart as he can imagine his own brother receiving his healing.

I think about the talks we will have about heaven, and how Levi will grow up in a home where death isn’t feared, but rather it is celebrated as we get to rejoice in total healings!

The Bible tells us in Revelation 21:4 “‘He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.”

We have a very unique job of parenting in such a way that we prepare Levi’s heart for the day Malachi will be called to heaven. And we have the ability to lay the groundwork for that day being a huge part in his testimony and journey with Christ.

Oh how real God and His mighty hand are going to be for our little Levi. And yes, there will be some hard conversations mixed in where we get the chance to remind Levi of Isaiah 55:8 “For my thoughts are not your thoughts, nor are your ways My ways, declared the Lord.”

But what a beautiful and powerful testimony Malachi has, and watching it intertwine with Levi’s is a beautiful gift.

When you refocus your thoughts a bit, even moments of grief can be much needed reminders of hidden blessings.

Much love,

Leah

It is officially fall here in Tennessee, and hands down my favorite time of year! I had to run an errand last night and spotted three deer on our road so I snapped a quick picture to show Levi. Later I looked at it and couldn’t help bur marvel at the beauty in the photo.

Covid has officially made its way to our small county! Jake’s school is very small, with around 120 in a graduating class. As of Friday they have 89 students in quarantine in his school alone.

Due to the sudden increase in cases we are keeping the boys tucked in as much as possible, but we did have to make a trip to the dentist this week to check on Malachi’s tooth for a suspected cavity. Thankfully it was just a wad of discolored plaque built up on the tooth and we were able to simply get a cleaning. This was the first time Malachi had this done outside of the operating room, and he handled it very bravely. He was super proud of himself afterwards.

Levi didn’t handle it so well, breaking out in sympathy cries for his brother. His medical PTSD is a real thing, and seeing his brother have to go through medical type things gets to him too.

He has been extra sweet to Malachi this week, helping him play without us asking him to. I love watching character and kindness develop in him.

On Saturday we celebrated Levi’s 3rd birthday! Here is a sweet video from the night before:

We changed our plans last minute in an effort to avoid people/covid and decided to go on a drive through the mountains and a family picnic by the river.

Levi got to enjoy some birthday brisket and mac and cheese! We also stopped by Sonic and got each of the boys a slushee in the color of their choice instead of traditional cake.

Both of the boys were very excited to get out of the house, and Malachi was all smiles listening to the fall noises (leaves crackling underfoot, etc).

After our lunch we went to the playground at the campground by our house and let Levi play until he crashed. He was so brave, trying the big boys slides for the first time.

Jake and I always try to be as inclusive as possible with Malachi, but the larger he gets the harder it is to get him safely into the fun. He got to go down the slide at least a dozen times and our muscles are certainly feeling it today.

Levi got a special birthday gift from his grandparents that has kept him busy! He likes to ride it backwards for the extra thrill.

And so does daredevil Malachi with a little bit of rigging!

And we finished off the night with some late night pizza for Levi. As you know, he is not able to eat most foods, but he can do pizza broken off into tiny pieces. He wanted a whole slice to himself and since it was his birthday we obliged.

I stood close by and watched him bite off pieces that were way too large for him to eat. He would chew each bite, thoroughly enjoying the taste and texture. After about thirty seconds he would bring a napkin to his mouth and spit out the mashed pieces and grab the slice for another bite.

I’ve watched him do the same thing over the last few weeks with Doritos. He truly loves them, but his body just isn’t ready for them yet. He goes through the motions, popping in a chip and breaking it down, then trotting over to spit it into the trashcan before reaching for another delicious bite.

I don’t know if it is the youth pastor in me or just the way my brain works, but as I watched the Dorito scene unfold one afternoon I couldn’t help but think there were some spiritual parallels hidden in there. And the more I have watched Levi eat the more my heart has connected with his weird little habit.

When he first started to eat “adult” foods I would stand cautiously by, breaking the large item into tiny pieces for him to easily enjoy. But then one day he snuck into the pantry and I heard the sound of a bag popping open. I watched, horrified, as he shoved a whole red Dorito in his mouth.

But then I watched him start to chew. His eyes which were typically panicky when eating such large bites, were suddenly calm and pensive as he processed what to do next. That’s when the nasty trash can spitting habit began.

I instantly felt foolish as his mom, realizing that when I broke everything down into smaller, manageable bites for Levi that I was not giving him the practice he needed to learn.

Hebrews 5:12-14

In fact, though by this time you ought to be teachers, you need someone to teach you the elementary truths of God’s word all over again. You need milk, not solid food! Anyone who lives on milk, being still an infant, is not acquainted with the teaching about righteousness. But solid food is for the mature, who by constant use have trained themselves to distinguish good from evil.

In the same way that Levi is training himself to break down solid foods, we are supposed to be reaching for the larger and harder pieces in the word of God. It is so easy for us to find the manageable, bite sized pieces of God’s word to digest. There are so many things that are in the Bible that we naturally do as humans, like loving others.

But the Bible is also full of solid pieces that we don’t even want to attempt. When there is work involved we shy away, choosing to stick with the easy milk and not challenge ourselves. It would be like me continuing to teach the same stories about the Bible characters to the youth without progressing the story into what we can learn from them.

That verse also uses an interesting phrase of “constant use”, reminding me that once you start on solids you have to continue on solids. In the same way that I don’t expect Levi to revert to drinking baby formula once he has tasted a grape slushee and daddy’s unsweet tea. Our taste should constantly be growing as we develop in Christ. Once we taste the solids we crave more, searching for new pieces of hard truths we can apply in our lives.

The final purpose of all of this training is to distinguish good from evil. Without a base founded on God we will never be able to develop that compass the verse is referring to.

When was the last time you allowed the word of God to challenge you, and not just tickle your ears?

2 Timothy 4:3

For the time will come when people will not put up with sound doctrine. Instead, to suit their own desires, they will gather around them a great number of teachers to say what their itching ears want to hear.

If the Bible is always saying things that make you feel good about yourself, I want to challenge you to read with fresh eyes and a fresh heart. It may just be that all you are looking for is the milk when you open it’s pages…take some time this week to search for the meat, and don’t be afraid when you find it as you recognize that it is training you for greater things.

Try to find one verse this week that makes you uncomfortable, as it highlights something that is a struggle in your own life. Talk to God about that and ask Him to help you in it.

You might be like Levi and have to chew on it and spit it out, not ready to take it in quite yet. But the practice of the chewing will eventually lead to swallowing those pieces and growing a little deeper in our faith and abilities in Christ.

On a side note, I have received so many messages this week regarding cutting back on the blog posts. Thank you to each of you who reached out. The words in them have rocked me to my core and helped me understand that God is still very much working through this silly blog. I will gladly continue writing these if it brings even one person closer to the Lord!

I am so thankful that we have a group of strangers and friends that are so invested in following our story. It helps give more purpose to our pain to see that our authenticity and honesty is helping others.

Much love,

Leah

I have spent a lot of time this week stuck in my own head with a million swirling thoughts. Sometimes my brain can be a refuge and other times it can be a dangerous, self-defeating place.

Every year before one of the boys has a birthday I struggle significantly with flashbacks and dark memories. Yes, the day that each of them was born was a day full of miracles but they were also the days that God abruptly perched us at the base of some pretty big mountains.

Jake and I were talking about the conversations we were having exactly three years ago; how wild it would be to have a typical baby that came home from the hospital in just 2-3 days! How wonderful it would be to experience “normal” with a healthy newborn. What a thrill it would be to watch our child be born, and experience that moment firsthand. There was such an excitement and joy as we anticipated Levi’s birth day. We knew the day would have a level of unknown, as he would had to be born slightly premature (doctor’s orders) but we never imagined what was to come.

Instead of the joy filled day we had imagined, we watched as each bubble we had so excitedly created in our minds was popped. I had to go completely under for his birth and Jake was not permitted in the room…we have two children and neither of us got to be “present” for their births. Levi was taken to another hospital with a higher level NICU within the hour of his birth, and once again I was spending the first days of my baby’s life away from them. It just felt so unnatural. The days that followed were filled with shocking diagnoses, unexpected surgeries, and so much disappointment as we watched our “normal” morph to resemble a path that looked eerily similar to Malachi’s.

But nonetheless, it was the day that our beautiful Levi made his debut into this world. As they wheeled me to the operating room that day I remember feeling pressed by the Holy Spirit to pray over him. This same prompting happened when I was raced to the operating room for Malachi the night he was born, and on that night the Spirit put the words of Job on my lips “The Lord giveth, the Lord taketh away, blessed be the name of the Lord.”

But for Levi those words didn’t fit. Instead the words from Numbers starting pouring out of my mouth “The Lord bless you and keep you, make His face shine upon you and be gracious to you. The Lord turn his face towards you and give you peace.”

I had this vision of the light of God when it hit the face of Moses. He was so bright after his encounter with God that the people were afraid of him when he came down from the mountain. My prayer that night was that God would be so present in that operating room that the light of Him would literally reflect from the face of my son. That people would look at his beautiful face and see the countenance of God reflecting off of it.

I can’t say with confidence that the light from God visibly shined from Levi when he entered this world, but I can tell you that the hand and mark of God has clearly been on his life since that day.

I was singing a worship song this week on the way to appointments and the words struck my sensitive heart in such a beautiful way…

You turn mourning to dancing– If I am being truthful, there was more mourning than dancing the night Levi was born. But as God has continued to write our story we recognize that each painful detail of his story has been such an important and vital part of his testimony.

You give beauty for ashes– God scraped together the ashes from our broken and burned dreams and turned them into something so beautiful. I can choose to ignore the beauty and focus on the ashes, but oh how that would dishonor God!

You turn shame into glory– This is a hard one to verbalize. I have struggled with feeling shame as a mother. If we are being honest, my body is 0 for 2 in creating healthy children, and sometimes the devil uses that to influence my self worth. But the more I turn to God on this one, the more He is revealing to me a glory in motherhood that many others never get the chance to experience. I have the privilege of seeing early on that God has created these boys with a unique story, purpose, and calling. They were designed to point others to Him, even from birth.

You turn graves into gardens– I have dwelled on this one all week, and I keep flashing back to the night we arrived to Cincinnati. Levi and I had taken an air ambulance and I remember looking at the lights of Chattanooga under our plane as we started our ascent and feeling so hopeful. Several hours later we got Levi safely tucked into the NICU in Cincinnati and he very abruptly and suddenly coded. They started CPR on his tiny 4 pound body and for the first time those familiar fears of losing a child rushed back from Malachi’s early days. I sat helplessly by his bedside and watched as the doctors mechanically breathed life into his lifeless body. For the first time in his journey, the idea of graves entered the picture.

But as the months slowly ticked by I started to realize that Cincinnati was truly a garden we had been planted in. There is a familiar phrase “bloom where you are planted” and it was in that very unit that we watched our miracle bloom and turn into a beautiful, rare flower.

You turn bones into armies– Oh boy, this one is an easy one. God literally turned Levi’s rib bone into the tiny miracle we needed for him to breathe trach free. God can take ANYTHING, as minute as it may be, and create a miracle right from it right before our eyes. If you want a powerful devotional tonight, read Ezekiel 37:1-14 and apply it to a situation in your life that seems impossible.

You turn seas into highways– We watched this one unfold in Chattanooga as we faced a sea wall in front of us, separating us from willing and eager surgeons in Cincinnati. We faced an impossible situation and watched as God swiftly parted the waters for us to walk on dry land. If we don’t ever face the impassable sea walls, we will never recognize the power and gift of God parting them.

Not many people get to witness modern day miracles, but what a privilege it has been to watch so many unfold in the lives of my children.

Alright, now to venture towards a topic that could be full of land mines…

Let’s talk politics.

I have watched social media from afar this week and seen the myriad of emotions surrounding the election and it’s results. There seems to be a lot of despair among my Christian friends, and it has left me scratching my head a bit.

In the Bible we see time and time again where God has displayed some of His greatest works in dark situations. Without darkness, you can’t understand the power of the light.

The Bible tells us “My grace is sufficient for you, for my power is made perfect in weakness.” Maybe this discourse and lack of unity in our country is the exact weakness that God is talking about in this verse. Maybe we are about to see the power of God work through our nation in a transforming way.

We have learned in our personal lives that sometimes our outcome doesn’t match God’s in specific situations, and our wordly eyes tend to focus on the devastating nature of not getting what we envisioned. But God’s outcome is always more beautiful than the one we imagined and will always triumph.

“Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope.” Romans 5:3-4

I think we often read this verse and focus on the biggies: sufferings, endurance, character, and hope. But tonight I want to remind you of the repetitive word tucked in there: PRODUCES. Each quality is a direct result of success with the previous one.

My prayer is that we can all start to see things with a heavenly perspective. That we can remember that we are strangers wandering through a foreign land and this earth isn’t meant to look like heaven. Our world is ugly, depressing, and innately evil…exactly the type of world that needs a Savior.

Our focus shouldn’t solely be locked in on making this world a more tolerable place; that is a task that will continue to leave us unfulfilled as it is an impossible one…it is entrenched in too much evil. Instead we should be focused on introducing this evil world to our Savior, and trusting God to work through one willing heart at a time.

Neither of the presidential candidates are the answer to the problems in this world. And neither one has the power to undo the plan of God, I choose to believe that God has something big up His sleeve.

Even the godly, annointed, and chosen men that God placed into power in the Bible failed miserably, letting the world oversaturate the Lord’s calling on their lives.

When will we realize that the answer to the darkness in the world doesn’t lie in a party, a man, or a political stance? The Bible doesn’t tell us to put our hope and faith in a man made process.

The answer to the darkness is the light of Christ! Instead of trying to change this world with a vote for a faulty man, let’s change this world with sharing that light inside us with others and allowing God to create a bonfire from it.

Please be in prayer for our family as we continue to process what to do for our family service project this Christmas. I have a lead on something special but want to make sure it is God driven and not Leah driven. Also be in prayer with me about the future of the blog…I would love to continue writing but am trying to decide if weekly posts are still what God wants.

Sincerely,

Leah

We are so thrilled to share with you how well Levi’s voice is developing. If you are new to the blog, when we were initially given the diagnosis (bilateral vocal cord paralysis) we were told that it would be unlikely that Levi would be able to produce sounds, and that many children with his condition do not have an audible voice. We found a support group that verified this prediction and had to process what that meant for our warrior.

As you know we explored lots of routes for Levi that would allow him to live life without a trach, and settled on the experimental procedure we did in 2017. When we met with the doctors they explained that we would be trading a trach free airway for his voice. Jake and I processed this sacrifice and came to the conclusion that a device free airway was our priority, and resolved to teach him sign language. We also talked with doctors about vocal cord injections down the road to plump them up enough to touch and give him a whisper of a voice.

The surgery was successful and we were shocked a few weeks later when we heard him make vocalizations. It actually concerned us because it meant his vocal cords were close enough to touch, which could mean they were close enough to also block his airway. When we traveled back to Cincinnati later that year they explained that the voice would be temporary and he would lose it as his airway grew and the cords moved apart.

But here we are nearly three years later and his voice is strong! The surgeon told us in August that his airway is growing with him and it doesn’t look like his voice quality will be affected anytime soon! Here is a video of him saying his brother’s name:

And one more video for you; we have been working on counting and numbers. He is catching on, but definitely has some fine motor impairments that keep him from being able to count with his fingers. But I am so proud of his willingness to learn.

This week we waged a savage battle against sleep. After several more nights of staying up until 4am with a child (they took turns) I blazed past my breaking point and decided that we simply HAD to find a solution. We revamped bedtime/medication routines and made some other changes to help facilitate success as much as possible.

The biggest challenge that we face each evening is with Malachi’s stomach. Little known fact, Malachi can’t be laid flat unless he is asleep. We even change his diaper with him sitting up! Anytime we lay him flat the air moves around in his belly and sparks his seizures, and getting him back to baseline after is such a challenge so we simply don’t ever lay him down while awake.

Yes, we have spoken with his doctors about this- we even took him to the epileptic monitoring unit at Vanderbilt to have his seizures analyzed and the specialist there said he isn’t the first child they have seen that has gut triggered epilepsy, but it isn’t common enough for their to spend research time and funds on. We had hoped that being able to vent his belly with his g-tube would help, but it hasn’t eliminated the issue.

After we medicate the boys around 9 each night, we have to pick Malachi up and help him burp about every 10-15 minutes. If we don’t do this he will get trapped air in his belly and start having seizures and/or cry most of the night with a tummy ache. This burping process goes on until he falls asleep around 1am, and with as big as he is getting I am physically sore by the time we are done for the day. He has hit the 40 pound mark and is completely dead weight.

Levi goes to bed much easier than big brother, but after he drifts off he is hooked to his equipment (feeding pump and sometimes pulse oximeter machine) for the evening and I want to be close to make sure he doesn’t do anything that would accidentally rip out his tummy tube. He is a mover and a groover so I am up several times a night unwrapping cords and fiddling with machines. I transition him to his bed with walls when I hook him up, and that has been a wonderful blessing for my peace of mind!

But since they both start the night in the bed with mom, this week we moved a spare king bed up in place of the queen. Levi sleeps with blankets and they were getting alarmingly close to Malachi’s face as he fell asleep.

Yes, it is overbearing and obtrusive, but it keeps the boys separated enough to peacefully drift off to sleep. With our new changes in place, I have been able to get all three of us asleep by 1:30 for the last three nights! And Malachi has slept 7 straight hours three nights in a row which has been a HUGE improvement from the 3-4 hours I was getting each night.

I recognize that was way more information than you could possibly have wanted to know about the sleep routines in this house, but alas that has been the main focus of my week. Without sleep, most of my days this week were focused on simply staying awake and keeping my kids alive.

One of the highlights of each week is horse therapy on Mondays. Levi started squealing with joy when we pulled into the parking lot this week, which is a huge improvement from the cries of terror we were getting four weeks ago.

On Saturday we loaded up the boys and took them to a college soccer game to watch two of our former high school girls. You would have thought we were taking them to Disney with the sheer excitement and joy that poured out of them on the drive there. They miss being out and about.

Malachi loves soccer. He loves talking about it, playing it (when his league was in session), and listening to it. He clings to every emotion from the fans and gets enthralled in the game. This is his face when he is intently focusing on something.

We seem to be turning a corner with Levi’s eating, and for the first time I have been able to envision a life with no g-tube for Levi. He is nowhere near that mark now, but his interest in food has grown and he is attempting so many new things. I would love to have him tube free by the time he is old enough to enter Kindergarten.

At his last Cincinnati surgery the pulmonologist was excited to share that it looked like Levi had “taught” himself to safely eat and drink; he said usually adults can do this but kids take much longer. The gap is still there in his airway due to his cords not fully closing, but when they cleaned his lungs there was no sign of food particles or foreign substances.

He still can’t break things down well but he is trying. We gave the kids some candy this weekend and Levi loved the twizzlers but he can’t swallow them. Instead he chews them up and sucks on them for flavor, then spits them into the trashcan before taking another bite. It is a gross process but he is still learning what his limitations are and acting accordingly.

When soccer season ends each year we bask in the newly acquired free time we suddenly have. But that last about two weeks and we start itching to get involved in something else. We are always looking for ways to use our time here on earth to impact others outside of our family, and free time starts to feel like wasted opportunities.

When I was a child I posted a Bible verse right above my bed, literally on the ceiling. I remember reading it for the first time and processing its meaning even as a young child. The words are ingrained in my mind.

“I must work the work of Him that sent me while it is day: the night cometh when no man can work.” John 9:4

Sometimes reading scripture through the eyes of a child is so refreshing, and I remember the straightforwardness and simplicity of the verse had an impact on me. The life of a Christian is about daily carrying out a job description to be the light of the world and the salt of the earth. Every day we should be looking for ways to draw others close to God.

But as I sit here and read that verse again, I can’t help but believe that God was imprinting it on me at such a young age for a bigger reason. You see, John 9 has become one of my favorite passages of scripture and one I feel so strongly applies to both of my boys.

Jesus and his disciples entered a town and came upon a man who was blind from birth. The disciples asked Christ whose sin caused the man to be born blind, a common belief in those times. In John 9:3 Jesus replied “Neither this man nor his parents sinned, but this happened so that the works of God might be displayed in him.” Almost immediately the man’s sight was restored.

That verse has worked it’s way to the top of my favorites list as I can’t help but believe that my boys are very intentionally unique. God created each of them with differences for a specific reason, and while they haven’t received a healing, “the works of God” are being displayed in them. My God is not a God of errors, and everything He creates has the ability to bring Him glory! Are you using your weaknesses in life to highlight His strength?

I think back to that verse written above my eyes as they drifted off towards sleep each night as a child, and I can’t help but believe that God was preparing my heart for this unique path and pointing me towards a Bible story that would become my own.

Yes, Jake and I have every excuse to sit at home and focus on our family. But we recognize that our time on earth is a job assignment and that a time is coming “when no man can work.” And my heart can’t shake the feeling that there is so much work to be done.

My mind has switched gears to focus on some ministry opportunities in our community and also planning out what our annual family service project will be for Christmas. We typically like to do something for the NICU mothers but with Covid I don’t know what that will look like. Be in prayer with me that God makes it abundantly clear what direction we need to go in this year.

And a final challenge, for myself as much as for you. Are we excitedly and actively pursuing the tasks God has assigned for us? Or have we turned our walk with the Lord into a job to be completed? Our work for the Lord shouldn’t be reduced to a daily mark on the checklist, but instead our work ethic should reflect our overwhelming love for the Father and our desire to be used for whatever task He assigns us to.

Thank you for continuing prayers of protection over my family. Covid seems to be staying at bay for now in our town. Masks are not required in our school system and we are only having one student at Jake’s school each week diagnosed, which is wonderful statistically. Keep those prayers coming!

Much love,

Leah