Quality of Life

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

Grief

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

Doritos

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

Produces

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

The Night Comes

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.

One of the many perks to living in a small town this week proved to be early voting. I was able to park, vote, and be back in my car in under 3 minutes.

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

Stinky Pits

Do you ever find yourself in a situation and you have to sit back and think “Wait, why am I doing this again?”

I have those moments often, and this week’s moment came when I found myself loading up the boys and heading three hours away for a regional tournament soccer game with our girls team. Malachi had a tummy ache on the way there, which meant lots of pulling off the highway at shady gas stations and trying to burp him. We made it there just in time for kickoff, and by that time I was a stressed mess trying to make sure the needs of my kids were met while attending to coaching the game.

I failed miserably at both jobs, and an hour and a half later I was loading the boys back into the car to make the three hour ride home. The boys were tired of being in the car, and they were both wired by the time we made it home at midnight. As I sat awake with Levi at 3am, I mentally started asking myself the question of “Why are we doing this? Why are we continuing to coach soccer when it requires so much of a sacrifice?”

The next day I was a walking zombie, but that evening we were hosting an FCA Fields of Faith event at our church for the teens in our county. We asked my mom to come to the house and watch the kids for a bit so we could both go and focus on the event. We were so pleasantly surprised when we saw so many of our soccer girls walk through the doors, many of which do not know the Lord.

I don’t ever want this blog to be used as a breach of privacy for people in our circles, so I will summarize with saying that it was a wonderful evening with lots of people growing closer to the Lord, including some of our soccer girls.

God has been reminding me that Jake and I have been called to be seed planters. Sometimes you have to step into the world to find unique places to plant and water seeds for Christ, and for us that is the soccer field. Some years we don’t see the seeds grow, and watching the thorns choke them out can be so discouraging. But then there are years like this one where we see God moving in a group of teens and know that He is hard at work!

On a totally unrelated note, Jake and I do Christmas a bit different for our family and follow “one thing you want, one thing you need, one thing you wear, and one thing you read”. We try to be very thoughtful about the gifts we choose, and this year I have had my eye on a touch activated dinosaur for Malachi’s “want” gift. They are ginormous and will sit within reach right next to Malachi when he is in his adaptive seating. The toy was discontinued in 2009, but I was able to track down a reasonably priced one in Knoxville. We made a quick pit stop on the way to the soccer game and snagged this beauty.

Shhh, don’t mention it to Malachi! He knows we picked up a Christmas gift for him, and the suspense has been making him smile all week. For now the dino is tucked safely in the basement!

The boys are continuing to improve at horse therapy- Levi is enjoying it finally and not bursting into tears when we enter the barn.

As you know, Malachi’s brain damage is extensive and one diagnosis that can go hand in hand with it is precocious (early) puberty. Last week I caught a whiff of body odor and realized that Malachi has one stinky pit. Oddly enough, it is just the one but oh goodness it will knock you down. We have been trying to find a good solution but after showers and scrubbing the smell still holds strong. We picked up some natural deodorant for him and it seems to be working, however Levi has been fascinated watching this whole process unfold. So fascinated, in fact, that he found daddy’s Old Spice and proceeded to cover Malachi’s hands, arms, and cheeks with it. So helpful, right!

I have been having a hard time accepting the BO on my 7 year old son. It seems like such a weird thing to be sad over, but it has spiraled my thoughts toward the realization that, precocious puberty aside, Malachi is growing up. And while my love and acceptance for him will never change, I fear that societies tolerance will change for him when he is no longer a “cute little boy in a wheelchair”. I hope and pray that my fears are irrational and unfounded.

Levi loves Malachi so much, and has been making sure to include him in all of his antics and pretend play. I found Malachi all propped up with an old iphone earlier this week and seeing his inclusive heart for his brother makes me happy. Malachi, on the other hand, didn’t quite know what to think.

On Thursday Jake and I had some friends reach out and graciously offer to babysit the kids so we could go out. For my birthday in March I was gifted a Cheesecake Factory gift card, and covid hit shortly after. It seemed like a perfect night to cash it in and enjoy some time alone. Jake and I spent the evening talking about life, and the many surprises it has yielded.

With Levi’s birthday coming up in three weeks my mind has started to drift towards those early days with him, and the surprise mountain we faced. Sometimes simply verbalizing the struggles can be therapeutic, and this was no exception!

There are certain times each year that trigger bad memories for me, and this particular week each year is always a rough one.

This was the week in 2013 that I was holding Malachi and felt an unnatural jerk from his little 9 month old body. We had been home from the NICU for 5 months and we fully believed that God would completely heal him from his issues surrounding his prematurity.

I will never forget the deep feeling in my gut as the motion of his body felt so rhythmic. I loaded him up and took him to the children’s hospital where they confirmed he was having a rare seizure type called Infantile Spasms- this seizure type has a 75% rate for severe mental retardation. These seizures continue to damage the brain until they are under control and in order to do that we had to start him on an intense steroid, shooting it into his little body twice a day for several months.

We eventually got his seizures under control, but through the course of that leg of our journey our hopes for a normal life for Malachi were dashed a bit. We still believed God could heal him, just we started to understand that His timeline didn’t seem to be matching up with ours.

Fast forward to the next year and Malachi went in for a surgery to correct three minor issues. But while they were in his abdomen they found a very serious intestinal loop that required major surgery. After surgery we were sent to the ICU for a bit, and those memories never leave.

As luck would have it, this was the same week for another abdominal surgery for Malachi in 2018. I am really hoping that eventually we can have the “good” years overpower the “bad” ones for this particular week!

Sometimes I sincerely wish I had a poor memory. I wish I could forget the details, the dates, the facial expressions, the shoe colors of doctors when they delivered bad news. But my mind steel traps them in. I saw a photo of a child in the hospital this week with a particular tape on her IV, and I could immediately smell the tape scent in my mind. I know that sounds crazy, but the details plague me!

I am starting a new study with my youth group this week called “Fake or Follower”, and one of the key concepts is the cost of following Christ. This week I have been reflecting back on different parts of my life, trying to find the ways in which following Christ has “cost” me something.

And during this reflection process God has shown me that the biggest losses for me have been friendships/relationships. I can count time and time again when I followed a direction God has called me to, and as a result friends have been so frustrated or offended that they have chosen to cut ties with me. Some have done so in subtle, gradual ways while others have done so with a barrage of unkind words.

I have mourned so much over those lost friendships, but looking back I would not change the decision I made to pursue the path God called me to. My God is not a God of regrets, especially when it comes to obedience. But I have to be completely honest…each of those lost friendships have hurt me deeply.

The cost of following Christ instead of the world can be painful.

But God has been reaffirming in me that you can’t let the fear of man’s reaction keep you from pursuing the path God is calling you to.

Galatians tells us:

Am I now trying to win the approval of human beings, or of God? Or am I trying to please people? If I were still trying to please people, I would not be a servant of Christ.

This week I have let the creaks of loneliness enter my bones. But God has been reminding me that there is a season for everything, and I have to look for contentment in each season.

Please continue to pray a hedge of covid protection around our family. We seem to be narrowly escaping people that find out they are positive, and I am confident that is the Lord’s doing! May he continue to protect my sweet boys and keep this final week in October a healthy and surgery free one!

Much love,

Leah

Empty Cup

This week has been an interesting one. I feel like I say that every week, so maybe interesting is our normal?

Malachi’s appointment with the epileptologist went well and we are going to try to increase his CBD oil a bit more to see if we can decrease some of his seizure activity. We needed to do a blood draw to check his seizure med levels, and I was mortified to find 14 people crammed in a small 15x10ft waiting room. I signed us in and stayed in the hallway as far away from the crowd as possible.

But the longer I sat in the hallway the more I epiphanies I had.

Epiphany #1 was a humbling one: I have no control over my toddler. At home in our bubble he knows the parameters, but in the hospital hallway with an audience in the glass walled waiting room watching him he was a maniac. I teetered between sheer embarrassment and sheer horror as I watched him touch every surface in sight and lay on the what I can only assume to be corona infested floor. This epiphany likely naturally led to the next one…

Epiphany #2 what in the world was I doing?!? Here I was, locked down at the house daily with my boys to protect them, and now waiting in a line in a hospital center that has a general pediatrics walk in clinic inside of it…and only one blood lab. I started looking at the kids inside the glass walled room and saw a variety of sickly looking eyes staring back at me. One of the poor children had sweated through her pajamas, and her hair was drenched with sweat. Another baby was stripped down to a diaper, eyes red and sickly.

I started to ponder what the best parenting move was in this situation: check seizure med levels or leave and protect them from potential sickness.

When Malachi heard about the blood draw

Epiphany #3 was realizing that I am not confident in the children’s hospital to do what is truly in the best interest of my family. This is a thought I have entertained many times before, but it is in moments like these that I have to remember that even in the medical settings with professionals I must advocate for my children.

In the end we made the decision to wait in the hallway for nearly an hour, and I resorted to empty time out threats with my tyrant, corona hungry toddler touching every surface he could.

Malachi handled the blood draw like a professional, which he actually is with the hundreds he has had to have in his lifetime. When the blood drive lady remembers his name and his “24 weeker veins” you know you are a regular.

By the time we left the building my blood pressure was soaring and I was in a pretty angry mood. I also realized that my emotions had overtaken my parenting and I hadn’t been the nicest mom for the previous 3 hours so I decided to stop by the zoo on the way home so Malachi could see his jaguar friend.

The adventures continued this week thanks to sweet little Levi. On Wednesday we were racing around to get out the door and I ran into the bedroom to grab my shoes from the closet. I heard the bedroom door shut and a sinister laugh came from Levi as he ran in saying “door door door”.

Earlier this week around midnight he locked me in the bathroom by implementing the child proof door lock. Jake was already asleep and I didn’t have my phone so I started banging on the door as loudly as possible and screamed. After about 5 minutes of this Levi was crying so hard in the living room (where he and Malachi were hanging out solo) that it woke Jake up. We gave him a long lecture with my hoarse voice on not doing that to the doors and assumed that he would be too traumatized to do it again.

But we assumed wrong. When I saw Levi’s sneaky smile I knew he had done it again and this time he locked himself in with me, leaving Malachi alone in the living room. Jake was at work, but thankfully this time I had my cell phone with me. I called the neighbors but no one was home, so after weighing the options I decided the only viable one was jumping out of the window.

Jake has had to jump out this window before, and it ended up with him rolling down the hill and getting covered in mud. I knew that I didn’t want to do that method, so I surveyed the drop and decided to try a cliff hanger mode.

I locked Levi in the bathroom so he wouldn’t attempt to follow me. Then out the window I went, trying to hang gracefully then drop to the ground. It was anything BUT graceful as I realized I am much heavier and much weaker than I used to be. My muscles were angry with me for asking so much of them (and still are), but I landed on my feet. I went in through the front door and yanked those darn baby locks off the doors on the way to rescue Levi from the bathroom.

The weather was pleasant enough for us to enjoy the pool a few more times!

I have bounced around three thoughts for tonight’s devotional thought, but I keep settling on 2 Timothy 4:3-4.

For the time will come when they will not endure sound doctrine; but wanting to have their ears tickled, they will accumulate for themselves teachers in accordance to their own desires, and will turn away their ears from the truth and will turn aside to myths.

I have many well meaning friends in my life that often remind me about the importance of self-care. They will commonly say things like, “You can’t pour into others from an empty cup” as they encourage me to take time to go do things I enjoy, or pamper myself. Admittedly I have a difficult time putting my wants above my boys and I am grateful I have great friends that desire to see me happy.

The mental picture this phrase provides is a logical one, and one that in theory makes a lot of sense.

I do believe that it is biblical to take care of yourself physically, mentally, and spiritually. No arguments here with that. But I will argue with you on whose job it is to fill the cup.

Here is the truth: it is not our job to fill the cup. I believe with all of my heart that God will fill my cup with the exact amount that is needed to fulfill the tasks He has given me to do. When we start to think that we control the amount in that cup with pedicures or girls nights out, we start to take away the dependence God wants us to have on Him.

That mindset can actually do more damage than good, as we start to mentally ration what things or people we could be wasting our cup on, as we believe we will be the ones that have to do the refilling.

In Philippians 2 we read

Have this attitude in yourselves which was also in Christ Jesus, who, although He existed in the form of God, did not regard equality with God a thing to be grasped, but emptied Himself, taking the form of a bond-servant, and being made in the likeness of men. Being found in appearance as a man, He humbled Himself by becoming obedient to the point of death, even death on a cross. 

Did you catch those words?

Christ emptied Himself.

Christ humbled Himself.

Christ became obedient to the point of death.

God will call each of us to do things that will require every last drop of our cup. He will ask us to do things that we have to use our “reserve” on…that bottom layer of the cup we have been saving and pretending is linked to our sanity.

When we walk in obedience and we empty ourselves in humility for others that God directs us to, God will see and honor our sacrifice and gladly refill us for the next task He has for us. I have seen this in our lives time and time again, as raising medically complex kids is a quick cup drainer. But I am so confident that this path God has me on has been hand picked by God…including all the bumps in the road that splash that water right over the edge of my cup.

God will refill our cup so much more full than any measure of “me time”. Part of being a child of God is fully believing that will do just that.

But I also want to make sure that I am being transparent here and share with you that the seasons of the empty cup can be so very difficult. Those times that you have emptied yourself and have nothing left to give can be lonely times- but those are the times that we are reminded to look heavenward, not inward. Dry cup seasons are sometimes there for a purpose, as God is simply telling you to stay still and rest.

Don’t let the fear and discomfort of dry seasons keep you from pouring yourself out for others when God clearly calls you to do so. Like the widow’s oil jar, He will never allow us to deplete without fully intending to replenish.

God bless,

Leah

I Am Your God

This week we crammed in as much fall break fun as we possibly could and managed to squeeze in some naps and chores in between. It was the reset that I personally needed to get mentally back on track for taking care of these boys full time. Sometimes I just need the relief pitcher for an inning or two!

On Monday the boys went to horse therapy, and it is always so interesting to me how much better they do when Jake is there to watch. Malachi puffs his chest out and rides like a professional. And Levi cried like he always does when he starts the session but dried it up within thirty seconds when he heard his daddy clapping for him.

On Monday night Jake and I had a very special surprise date night thanks to our great friends. We went inside a legit restaurant for the first time since early March and sat down for a nice kid-free meal. It felt so refreshing to simply get out of the car and walk immediately into the place without unloading wheelchairs and kids. Such a blessing.

On Tuesday morning I went solo to a car appointment and got to read a book for almost an hour and a half without interruption. It felt so normal and pre-children to be able to escape in my mind and focus on someone else’s words and life. I am a memoir gal, and have been working my way through all of the books of Corrie Ten Boom; this particular one she wrote about her father and all of the many spiritual lessons he instilled in his children. It was so challenging to me and caused me to evaluate how well I am instilling hard gospel concepts in each of my boys.

We spent some time at a local park down the road from our house, letting little Levi ride his bike. Malachi got to ride on the swing with dad, and this wasn’t an “ordinary” one like the one at our house…this one squeaked and groaned with each swing much to Malachi’s delight.

We still ran some soccer open fields this week for our girl’s team as we prepare for the district tournament. Jake ran the practices and I brought the boys out for a change of scenery.

Our haircutting friend came by the house that evening and gave each of the boys a much needed haircut. Levi was uncooperative but thankfully his hair is messy enough no one would know!

On Wednesday Jake and I planned a great day of fun for the boys, making the 1.5 hour drive to a large zoo in Knoxville. We made it about an hour from home and I turned wide eyed to Jake as I realized that neither of us had put Malachi’s food in the car that morning. Oops! Thankfully I keep some spare medical supplies in the van for worst case scenarios. We were able to dig out a syringe and an extension and hijacked some food from Levi’s feeding backpack to tide him over until we got home that afternoon.

We stopped for a nice sidewalk lunch on the way and took our sweet old time enjoying the beautiful day. When we got to the ticket counter at the zoo at 1:30 they informed us that the zoo closed at 2:00 that day. Oh goodness. But at that point we were committed as we had talked the day up to the boys and made the drive. So we bought tickets and booked it to the back corner of the zoo so we could take our time walking back to the exit.

Poor little Malachi was genuinely excited about the zoo, as this one had lions, tigers, and rhinos. But due to COVID precautions they had roped off several feet leading up to the glass. I couldn’t push his chair close enough to see any of the animals and seeing him try so hard to see them with his low, struggling vision broke my heart a little bit. He can’t really see them normally, but he can see movement if they come close to the glass by him. He was clearly disappointed so we did our best to describe them.

Then came the redeeming trip on the zoo train. That was the three minutes we needed to make the trip feel worth it!

And of course we let the boys pick out a toy from the gift shop. I am always so amused with how picky Malachi is when it comes to picking out a toy. He uses his signs faster than ever before and said “no” to at least a dozen stuffed animals before we found a jaguar puppet that he could put on his hand. He grinned and signed YES YES YES and we knew we had “the one”.

We headed back home and later that evening I took the kids to a friends house down the road. Malachi got to hold a rabbit and a kitty named Simba, which made him beam with joy and giggles.

Levi’s definitely in the toddler phase and emotional mood swings are frequent and severe. He has been crossing his arms when he gets angry with us, and I have to try really hard not to smile as it just looks so darn cute.

On Friday the boys and I made a trip to visit with my brother and his family in Atlanta. We get to talk on the phone with them often, but being able to run around with the cousins in person was a real treat.

I was also able to catch up this week on the special needs mom to-do list…the list that I let stack up because I just simply don’t want to deal with the phone calls. But with Jake home and no excuse not to, I tackled the list one item at a time.

-I filed a third medical appeal with insurance to cover Levi’s recent Cincinnati surgery.

-I worked with the old diaper company with no luck, so I transitioned us over to a new diaper company that will provide the brand/size we like. Call me a diaper snob I guess…but Malachi complained a lot about the other ones so I just don’t feel right making him wear them.

-I filed grant paperwork to get some financial aid to cover items insurance won’t cover.

-I picked out curriculum for Malachi’s homeschool program and started the pre-approval process for the purchases I would like to make with his state educational funding. Through the Individualized Education Account I have $7,300 to spend on his educational needs this year. That is mind blowing!

-We are also started actively looking for a tutor to come work with Malachi a few times each week so he can feel like he has a “teacher” and some time focused solely on him and for him.

With each tackled task I felt that water level that was resting near my chin drop a bit lower. I felt like I could take a deep breath and enjoy simply being present with the boys without the distraction of the to-do list.

Tomorrow we trend back towards our normal with Jake back at work. We kick tomorrow off strong with a routine trip to the hospital to see Malachi’s epileptologist. Malachi’s seizures are still a daily thing, but have morphed with the help of his CBD to short ones.

This week, however, they started amping up in frequency and intensity- interestingly timed with when we ran out of probiotics. Those fews days were very difficult with Malachi having some major seizures in the middle of the night. I sleep right next to him so I will wake up when he goes into one- he turns so hard that he starts smothering himself in his own pillow. I wake up to him trying to breath through the pillow and choking during the process. We try to race out of the room before he starts coughing or vomiting so he won’t wake up little Levi.

Malachi has intractable epilepsy, so it is always changing. We are currently at 4 different types right now, each with a different trigger. It is predicted that he will develop more seizure types as he grows and there is nothing we can do medically to eliminate the seizure activity. If I had to make a list of the worst things about being a medical mama I am pretty confident epilepsy would rank up in the top three.

Epilepsy is ever evolving, it is triggered by the most random things, and it takes my son away from me for a short period of time. Watching him try to recover after the seizure is over is heartbreaking, as you can see firsthand how draining those few moments can be on his little 7 year old body.

But the reason it ranks near the top of the list is because of the helplessness I feel in those seizure moments. A few years ago I remember telling someone that the only thing I can do is enter the seizure with him and try to give him some stability to focus on. I often try to stay as still and calm as I can so he doesn’t feel my fear. But I also have to be hypervigilant, counting his breaths to make sure they are consistent and keeping him from injuring himself.

But epilepsy has taught me what it truly means to place something in the hands of God.

Isaiah 41:10 ‘Do not fear, for I am with you;
Do not anxiously look about you, for I am your God.
I will strengthen you, surely I will help you,
Surely I will uphold you with My righteous right hand.’

During those seizures I have to be Malachi’s anchor in the storm. I have to make sure he gets through that moment safely and feels secure during those fearful times.

And so often I feel so alone in this job. The epilepsy mom is a unique role- one that you don’t truly understand until it intertwines into your every day.

But as I read this verse above it reminded me that in the same way Malachi looks to me to be his anchor in the storm, God is that same anchor for me in this leg of my storm.

The words “Do not anxiously look about you” ring so true in my ears.

I know I often talk about things that are unique to special needs parenting, but the blessing of our story is that the struggles are universal enough to be applied to so many other situations and lives.

What in your life is causing you to look anxiously around you? What things in your life create a paralyzing fear, as you recognize there is nothing you can do to eliminate that beast that you are staring into.

But even more powerful that the command to not look anxiously around are the simple words that follow it: “I am your God.” So perfectly simple. In the same way I reassure my son in his seizures that I’ve got him safely in my arms, God gives us that same comfort in our struggles.

I don’t know what your “epilepsy” may be. But my hope is that this week we can recognize the calm arms of God wrapped around us in those moments of helplessness. As often as we try to convince ourselves that our struggles and trials are unique, they all have the amazing potential to send us closer into the embrace of God.

Please pray healthy over our family as we continue to try to live and thrive in a COVID world. Pray that the refreshing that I was able to experience last week will carry me for a long time.

Much love,

Leah

Enough, Lord

Jake is officially on fall break this week, and it couldn’t have hit at a better time. We are looking forward to a week of catching up on chores, swimming in the pool, going on some small family outings, and taking turns napping. Bring on the sleep!

There is a constant pressure that builds on the special needs mom. It isn’t anything specifically unusual or extraordinary that contributes to it, but I have found it to be a combination of the routine medical needs plus the surprises. I can’t handle the surprises. They mentally break me.

Special needs mothers have to accept that there are so many things beyond our control. One morning this week I medicated and fed both boys, then at the exact same time they both started throwing it all up (Malachi one large and Levi 5 smalls as he walked from the kitchen to the living room). I looked back and forth at each child retching, trying to keep each from choking on their vomit and also trying to survey the damage to know what to get to clean it up…carpet cleaner, tile cleaner, bath towel, garden hose haha?

My morning started calm with everyone ready to walk out the door and escalated to baths, outfit changes, and deep cleaning. Then there was still the question of whether or not to re-medicate both boys.

It is in these moment of chaos that I feel the pressure build a little bit more.

We made plans to meet some friends at the zoo this week, but the night before Malachi ended up having several seizures. He and I stayed up until 3am and woke up just a few short hours later with another big seizure. I knew he was so excited to go to the zoo, but clearly his little body was exhausted.

You can’t plan for the surprises…and I don’t know that it is healthy to live a life anticipating them. But at this point the surprises come so regularly I am not sure they actually qualify as surprises anymore!

We ended up going to the zoo, and while Malachi was very limp he did have a wonderful time. He even got to feed the giraffes and ride the choo choo train which ended up being his favorite. I so badly want to create these memories for my boys, and it makes me feel a bit like a typical mom.

And Levi was a wild man! I haven’t seen him that wild ever, and he had such a wonderful time.

We came home that afternoon and tried to recuperate from the fun day. Both boys slept on the way home and woke up a little more perky. My mom came over to play with the kids while I ran down the road to watch the soccer team play and when I went out to the van it wouldn’t start.

For some reason, this surprise hit me harder than the medical ones. I had a “life is not fair” moment- as if life should recognize that my plate is full and not add things to it. Oddly enough I had just taken the van to the shop this week for a different reason. Life had tossed two van repairs onto my teetering plate in two days.

I tried to call Jake, but he was coaching the girls and didn’t answer. So then I threw myself another pity party with the theme of feeling alone. There are times I so desperately need someone else in my life to take over some of my burdens, and Jake can’t always do that with his work schedule.

I can fully admit when my burden is too heavy to bear, but sometimes when I look around I can’t find anyone to help carry part of the load. It is a weird and lonely place to be in. Most of the time those burdens are too unique to be able to pass off to someone else, but typical things like car problems are in a different burden category.

So I had a good cry over that and then popped the hood to pretend to know how to fix the car haha. Thankfully later that evening one of our wonderfully supportive friends came over and helped solve that problem. And the other repair will get fixed this week while Jake is on break.

Changing gears- we got new neighbors this week and they have some friendly dogs that stopped by for a visit. Malachi has always loved dogs, and loved our two so much before they each passed away. One day we would love to get another dog, but you can refer to the “surprises” comments above to imagine how that would go right now.

Oh how I love seeing pure joy on Malachi’s face. And his toothless grins. He is cutting a few teeth right now, which could be the culprit for the uptick in his seizures.

Levi has been eating and eating and eating this week! I think he must be going through a growth spurt. We met in person with the boy’s feeding therapist this week next to the parking lot of the clinic. We have been doing tele-med with him since March and I felt like it would be good for him to lay eyes on Levi while he ate. I am still not comfortable resuming therapies yet in the clinic setting and can’t imagine us doing that for quite some time.

Levi helping mommy do the dishes

I know sometimes I reuse verses and thoughts on the blog, but there are things God has shown me in the past that He brings to my attention time and time again. This week as I have encountered an overwhelming amount of surprises I keep thinking of a specific verse from the Bible: “Get up and eat, for the journey is too much for you.”

Out of context those words might not mean much to you, but when you hear the story surrounding it, it really takes form in my life and might in yours also.

Take a moment and read this excerpt from 1 Kings 19:

Elijah was afraid and ran for his life. When he came to Beersheba in Judah, he left his servant there, while he himself went a day’s journey into the wilderness. He came to a broom bush, sat down under it and prayed that he might die. “I have had enough, Lord,” he said. “Take my life; I am no better than my ancestors.” Then he lay down under the bush and fell asleep.

All at once an angel touched him and said, “Get up and eat.” He looked around, and there by his head was some bread baked over hot coals, and a jar of water. He ate and drank and then lay down again.

The angel of the Lord came back a second time and touched him and said, “Get up and eat, for the journey is too much for you.” So he got up and ate and drank. Strengthened by that food, he traveled forty days and forty nights until he reached Horeb, the mountain of God. There he went into a cave and spent the night.

When I read this story there are so many things that pop out at me. While I have never been ready to die, I can relate so much with Elijah’s comment “I’ve had enough, Lord.” Have you ever spoken those words to God? I know that I have spoken them many, many times. I have said them in the same tone as Elijah too, in a total moment of defeat and surrender.

God sees our innermost being, and He knows before we even speak it that we have been pushed beyond what we think we can bear. But sometimes it is in those weak moments that we can hear God the clearest. When we are able to handle all of the “things”, we don’t have to turn our eyes to Him in desperation. But it is in those moments where things extend beyond our control that we have no other option but to call on Him.

In this story, God sent His angel to restore strength to Elijah. He met his needs in a supernatural way, providing a warm fire, fresh baked bread, and a jar of water. This part is interesting to me as well, because a few chapters back we read about God providing food for Elijah dropped by ravens and water from a nearby brook. This time it was provided in such an intentional way, almost as if God knew Elijah needed the act of kindness more than the sustenance. Oh boy, how often I have been in that same state of mind.

The second time the angel wakes him up is so powerful to me as well, as if God wanted to make sure Elijah knew that even the tiniest needs, like his hunger, were acknowledged and important to Him.

But the angel’s words just keep playing in my mind: “The journey is too much for you.”

This week I have felt like the journey is too much for me. I feel underqualified, overwhelmed, and emotionally fragile. I feel inadequate, and in many ways I am.

The journey is too much for me.

But like Elijah, I have to find comfort in knowing that God sees that this journey is far too much for me. He sees that I need sleep, he sees that I need someone else drawing water for me in a jar and baking warm bread for me over a fire I didn’t have to create. He hears me say “I’ve had enough, Lord.”

And He isn’t angry at my proclamation, but instead I can see him with a loving smile on His face, touched that I have diverted my eyes towards Him. I am sure He has already dispersed some angels my way, like our car buddy on Thursday night.

And I have confidence that He will give me the strength this week to continue the journey.

I don’t know if anyone else needed that reminder…I know I sure did!

God bless,

Leah

Raised in Christ

In just under two months Levi will turn 3! He is like a sponge these days, soaking in all of the things around him and exploring anything he can get his hands on.

Levi is going through a baby stage and is absolutely fascinated by babies on tv. He will also pretend to be a baby every now and then and when he does that he lets me hold him and rock him for a few seconds.

This week as I rocked him and held him close to me I felt a lump of emotions well up in my throat. Like I have said so many times, special needs grief is so unique and can be sparked by the tiniest moments.

This wave hit me as I flashed back to baby Levi. After Malachi’s rough beginnings my mommy heart was so excited to hold my baby right after birth. But when I woke up from surgery Levi was nowhere to be found. Within the hour he was headed by ambulance to another hospital and I found my arms empty.

After a few days I was finally discharged and got to snatch up my wire covered and oxygen tubed 4 pound baby boy and I cherished those moments. Very quickly those moments of peace were replaced with bad news, surgeries, air ambulances, and LOTS of intubations. When he was on the ventilator I wasn’t able to hold him often- and he was on and off of the vent for the first 5 months of his life. All I could cling to was one day hoping to snuggle my baby at home like a typical mom.

When we finally got the discharge papers we raced back to Tennessee and it was my mommy moment to shine! But as I held his little body close to mine he immediately erupted into tears. It reminded him of the many times he was swaddled to prevent him from pulling his ventilator out. It also reminded him of the many times he was held down for blood draws, IVs, intubations, and so many other procedures.

My sweet baby had associated being held by human hands to inflicting pain, and rebuilding that trust took a long, long time. He never truly got to a place where he was comfortable simply being held, and each time he rejected my attempts to do so felt like a dagger popping yet another expectation balloon.

So now when he crawls into my lap as a two year old pretending to be a baby I am flooded with such emotions…pure joy that I can snuggle my baby, disappointment that I missed this in his early years, pride that he and I have been able to rebuilt the trust the NICU took from our relationship, and plain ol’ overwhelming love for him.

This week we had an appointment day with the Gastroenterologist for both boys. I love when I can pair up a specialist, and right now they share about 7 of them. Levi’s medical PTSD kicked in and when I asked him what he was scared of he showed me his nose (the COVID test from surgery last month). His memory is apparently really good. He screamed and cried for the appointment, then when we went to leave was so happy to be going he told each staff member “love you” as he walked by them toward the exit.

The good news is that both boys are gaining weight really well right now. Before Levi’s birth, Malachi was 40 pounds. Living in the Ronald McDonald House and me not being able to focus on everyone’s needs took a toll on Malachi and he dropped down to 25 pounds. When we returned to Tennessee we went ahead and got Malachi’s g-tube and have been working hard to get back to a healthy weight for him. This week he weighed in at 35 pounds!

Levi is also gaining well right now and is just shy of 29 pounds. The doctor was happy enough with their progress to put us on a 6 month rotation!

We high tailed it out of the office and headed for an adventure! The boys have not really done anything in public since March, so I thought it was time to try an adventure. I had told them both we were headed to the zoo and Malachi’s eyes immediately lit up.

We made the hour drive there and when I pulled in the parking lot was a little more crowded than I imagined it would be. I got cold feet and considered leaving, but when I looked at Malachi I knew he was eagerly listening for cues we had arrived. I pulled into a parking spot and announced “We’re here” and he erupted into a fit of giggles.

I got them out of their seats and headed toward the entrance and Malachi continued giggling uncontrollably. His laughter was contagious and pretty soon all three of us were laughing and squealing with joy. I haven’t seen Malachi that excited EVER. It genuinely caught me off guard to see him so excited about a day at the zoo.

He can’t really see most of the animals, so I describe each one to him. He spent at least the first 20 minutes giggling non-stop. We went straight to his favorite, the jaguar, who so kindly came over to the glass for the boys. Then we went to see the monkeys- I took a video for you so you can see how much joy was exploding out of him:

Levi didn’t shed a single tear this time, even going nose to nose with the jaguar. He was so excited to be out of the house, and was way more fascinated with the other zoo guests over the animals.

The boys each got to pet the goats, but I wasn’t able to get photos of Malachi as holding him takes both hands! Malachi loved feeling the sharpness of their horns.

I was so pleasantly surprised by our ability to avoid all of the other people. We never shared an exhibit with another person and even the trails were empty. We have a season pass that expires in November so we are going to try to make several more trips while we can- maybe even another one this week.

Other random, yet noteworthy moments from our week…

Levi rode his horse by himself at therapy!

Malachi’s new Chill Out chair came in from Canada! We are still finding the sweet spot with it, but overall I am thrilled! His posture is so much better in it than his other comfy option.

The chair has a rocking ability, and it didn’t take long for Levi to discover it. We have to be very close when Malachi is in it- and this video explains why:

And as always, we had moments of pure chaos. This week most of those have revolved around urine. Lots and lots of urine. We are thrilled that Malachi is putting on healthy weight, but his diapers are no longer a good fit. Typically I would get a stack of samples from the medical supply company, as he is now entering adult sizes but with COVID they are no longer sending samples. I purchased several options from Amazon, but the cost is outrageous. I will be working with insurance this week to find an affordable alternative, but until then we are dealing with lots of leaks.

Malachi’s most epic one was when we were away from the house at an all day soccer tournament. We thought the boys would enjoy the fresh air and it was an overcast day, so they sat on the sidelines with us (away from everyone else of course). After lunch I plopped Malachi on my knee for a quick diaper swap out and he unleashed a half a days worth before I could complete the mission. It rolled up my leg, filling my shorts and covering my shirt. The stream went strong for what felt like a minute and by the end even my socks were squishing. I was mortified, as I had packed extra outfits for everyone but me. A friend mentioned that we were less than a minute away from a sporting goods store so I handed the boys to Jake and jumped in the car to find some replacement clothes for the rest of the day.

Malachi laughed at his little tirade and especially at my reaction after. Since then he has been plotting to do it again, laughing each time I get ready to change him again. Stinker.

Overall it was a wonderful week, filled with lots of little adventures that kept us all sidetracked from reality. We even had a nighttime swim in the therapy pool. In the gaps of the days we had lots of medical phone calls, pharmacy pick ups, grocery pick ups, and therapies.

One evening this week I snuck outside to read the Bible and do a devotional. I heard the door creak open and saw curly haired Levi peek around the corner at me then run back in the house. A few minutes later he came around the corner with Jake’s Bible tucked under his arm and casually sat next to me to read his Bible too.

He pretended to read the words, speaking gibberish with such confidence.

In 1 Corinthians 11:1 Paul writes:

“Imitate me, just as I also imitate Christ.”

I have been so challenged this week to examine the example I am setting for others, including my own children. There are days I feel like I am nailing it, and other days I let my worldly nature win out. I saw this photo this week and couldn’t stop laughing.

The truth is that no matter how hard we try, we will never be a “good enough” imitator of Christ. It is impossible to imitate perfection. But we can’t ignore that so many eyes are watching us- watching our reaction, our habits, our motivations, our conversations- to see if our love for Christ goes beyond the church doors on Sunday morning.

We may not always get to see the ripple effect our “different” walk has on the world, but there are small glimpses that remind me the importance of actions over words.

I read an article this week that I really wanted to share with the parents in my youth group, but a friend said it might not be received very well. So instead I will share it with you. It has given me some big food for thought and I hope it does the same for you.

I am not quite sure what proper etiquette is for sharing Facebook articles on this platform, so I want to note that this article came from “Jeremiah Johnson Ministries” Facebook page and was written by Jeremiah Johnson.

Jeremiah Johnson Ministries

I RAISED MY KIDS IN CHURCH, BUT…..“As a church leader and traveling prophetic minister, one of the most heartbreaking conversations to have with so many distraught Christian parents across America right now is the familiar one where they can’t figure out why their kids aren’t serving God after they raised them in church for 18 years. I have wept down in altars and felt the burden of God concerning this issue with hundreds and hundreds of parents along my journey.

One night after preaching at a church service and crying out with a particular set of parents, I got down on my knees in my hotel room later that night and asked God for revelation concerning this crisis in the Church. I went to bed and God woke me up at 3:33 am and said, “Satan is not afraid of anyone who lives IN CHURCH, but he is terrified of those who have learned how to live IN CHRIST!” The voice of God specifically distinguished between “in church” and “in Christ”.

As I sat in that hotel room after hearing the voice of God, great sadness swept over my soul. I realized in that moment what a great deception had swept over the body of Christ. Parents have fallen into the trap of dropping their kids off at youth group and kids church hoping the teacher would invest in their students at the expense of them having to actually disciple their own children in Christ while they were at home.

Like a twisted Hannah syndrome, parents are dedicating their kids to the Lord with the expectation that someone in the church (Eli) will do the discipling for them when this mindset is full of deception.

I’m all for church attendance, but I’m convinced the vehicle God created (the church) for people to actually encounter Jesus Christ and be discipled in Him has become a social club that entertains and caters to the flesh. Videos games and pizza have replaced radical encounters with the Holy Spirit and fire.

All of us Christian parents have to ask ourselves, “Are we/did we raise our kids ‘ in church’ and just expect them to magically serve God the rest of their lives because they heard good teaching in Sunday school/youth group OR are we actually teaching them how to live “in Christ” through discipleship and living by example in our own homes?”

The awakening and revival that so many are longing for is actually going to begin with healthy marriages and sacrificial parenting.-Jeremiah Johnson

As my little Levi continues to grow, I pray that God continues to press on Jake and I’s heart the importance of raising him in Christ. We don’t get a second chance at raising our children, so prioritizing a firm foundation in the Lord has to be intentional.

And seeing his love develop for the Word of God is just so precious to witness.

Please continue to pray for the health of our crew. With cold and flu season creeping in we will have to continue a pretty tight lock down. Getting out and about a bit this week reminded me of how detrimental these past few months have been to the boys, especially Malachi. He thrives on human interaction and being locked in the house all day doesn’t really provide what he needs.

Much love,

Leah