The Least of These

We had a medically complex week…one of those weeks that was going perfectly then stopped in its tracks and did an “about face”.

Jake was off for the week and we were looking forward to some family fun. On Sunday Jake took Levi to the golf course for the first time for some bonding time.

In the meantime, Malachi and I cuddled up and enjoyed a lazy Sunday together with the promise of just he and I going to see the new Disney movie, Encanto. He loved that idea and his jealousy simmered down quite a bit.

Wednesday rolled around and we headed to the theater. Malachi really enjoyed the movie and also enjoyed the one on one time with mom. Afterwards we went grocery shopping together which he was excited to do, but he was having a harder than normal time keeping his head up. To be really honest, I was frustrated with him over it. When he chooses to not hold his head up it looks like his neck is broken and driving him through a busy grocery store with a wheelchair and a cart in tow put lots of eyes on us anyway, not to mention Malachi’s broken looking neck.

I asked him if he wanted to buy mom flowers on our ”date” and he signed a quick yes and smiled with pride.

Later that evening Malachi felt a little warm so I checked his temp and it was 99.2. He wasn’t really acting sick or different so I gave him some meds to help him rest, but 30 minutes later his breathing sounded a little more labored than normal so I spot checked his oxygen saturations. It read 85…education moment: obviously 100 is the best saturation you can get. Malachi’s baseline is 94-95. Anything below 88 is hopsital worthy at our house, and I usually pack a bag at 90 to prepare for the trip.

But Malachi still wasn’t really acting sick. So I grabbed the hospital grade pulse ox and strapped it on, hoping that we would get a better reading, but unfortunately it confirmed the low saturation. Malachi was sleepy eyed and drifting off so I made a judgment call to hook him up on our oxygen concentrator and wait until morning to re-assess. I stayed up all night watching those numbers and hoping that the solid rest would magically heal him.

Thanksgiving morning rolled around and Malachi was parked on 2 liters of oxygen. I felt comfortable continuing to keep him at home and treating him there but then his heart rate starting spiking up. Whenever Malachi has an infection that is one of the main ways his body tells me, and since infections don’t typically self resolve I decided this was worthy of a trip to the Emergency Room at the Children’s Hospital.

But I will tell you, I really really really did not want to go. I want what is best for my son, but I loathe spending holidays in the hospital. It highlights some of the hard parts of our journey and attaches a significant date to them. I can tell you stories about specific surgeries or hospitalizations but can’t tell you the month or day. But I can tell you in great detail about every Christmas, New Years, Thanksgiving, Valentine’s Day, Birthday, etc that we have spent in the hospital because of the memorable date attached to it.

In an effort to avoid reality I packed my bags very slowly- one for the ER and an extra in the car with three days worth of supplies and clothing in case they kept us. Which unfortunately they did.

After several tests and several hours in the ER we were admitted for what looks to be a very early bacterial pneumonia. His lungs aren’t terrible yet, which is a blessing. The viral panel came back completely clear but his white blood cell count was high. All signs indicate a lung infection so they are treating it as such.

Friday morning during rounds we talked about a plan for discharge and the doctors left the decision up to me based on my comfort level. While I wanted to immediately nod and sign discharge papers I knew that Malachi wasn’t quite ready to go home. When he napped his oxygen was down at 83, which is dangerously low. But by Friday afternoon he had stabilized a bit more and I brought him home to continue treatment from here. The antibiotics seem to be working on whatever crud is in his lungs and we are doing nebulizer treatments and home chest therapy to break up anything stuck in there.

Malachi’s demeanor never really changed through the adventure. He was in great spirits and not acting like his normal sick self until Friday morning for a few hours. I talked up the stay, presenting it like a slumber party for just he and I, and he really liked that concept. We watched movies together on the hopsital bed in between nurses rounds, doctors visits, and chest therapy.

We had big plans to pick out a Christmas tree and soak in the last few days of Jake’s time off but those plans have been put on hold until Malachi is back to a safe zone. He isn’t worse but he is progressing toward better incredibly slowly. I have canceled our appointments this week and we will be focusing on healing.

But for conversation sake, let me rewind the week a bit and share some fun things! We officially brought home the batmobile for the boys!

And Malachi couldn’t stop smiling.

While we were in the hospital a wonderful friend helped Jake clear out some trails in the woods behind our house to we could go trail riding. I bundled Malachi up and tried to take him out for a much anticipated trail ride but he ended up having a pretty big seizure once we got out there- I think we tried a little too soon.

The boys got some much needed haircuts this week and Levi looks like a new kid!

Basketball for him has been…umm…interesting. I took him to his game on Saturday and I had several fans laughingly tell me that he was their favorite to watch. I am not convinced that is a good thing! I think it is safe to say that I have a class clown on my hands who loves to entertain. He ran up and down the court with his arms inside his jersey for a huge part of the game.

He snuck into the closet, determined to wear dad’s basketball shoes to the game and was mortified when I told him no…and made him put on shorts.

Levi wanted to give Malachi a real hug after his hospital stay so we found a way to make it work.

If I am being honest, I have not been in a great place emotionally and mentally. The day we got home from the hospital Jake started coming down with a cold. He is masking up in the house and washing hands often. I am cloroxing the house frequently but it is really hard with Malachi’s level of hands on care to keep these germs from him. Not to mention little Levi, who slept face to face with Jake while we were gone. When he gets a common cold he vomits non-stop from his airway anatomy when swollen.

While we were in the hospital the rounding doc and I had a pretty hard conversation about how the majority of children with Malachi’s severity of care pass away from lung infections. He explained that the more Malachi grows, the harder time his lungs will have keeping up with managing sickness. Coming home with pneumonia (but a clear viral/respiratory panel) and being introduced to a cold is a recipe for being right back in the hospital. And the ominous thought that one day a similar scenario to this one might lead to me leaving the hospital empty handed has been hard to handle.

I continue to pray over Malachi’s death, asking God to protect him from pain and suffering when he calls him heavenward. Oh the faith this journey of motherhood requires. But I have nothing else to cling to.

I have shed a lot of tears this weekend, overwhelmed with the suffering that hides around the corner in wait for our family. The reality is that our journey will never get easier. It will only get more complicated, more messy, and more heartbreaking. And I just really don’t want to accept that.

On Friday night I got Malachi settled with all his gear and went to take a burning hot shower, something I always look forward to after stays in the germy hospital. As I looked in the mirror I didn’t recognize the person staring back at me. The dark circles, the gray hairs, the added weight, the dark and lifeless eyes. As I stared in the mirror I couldn’t help but wonder what God sees in me that I can’t see. Clearly in his sovereignty He feels that I am the perfect person for the job of raising Malachi and Levi, but I just can’t seem to see the same things He does. I just feel so ill equipped. And so incredibly alone navigating a world full of suffering. My mom heart wants to protect them from pain, but it just isn’t possible.

I have had to face a reality that my job isn’t to keep Malachi alive- the timeline for that is in the hands of God, where it should be. My job is to be Jesus to him during his time on earth.

Matthew 25 tells us ”For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink…I needed clothes and you clothed me…I was sick and you looked after me.”

”And the righteous will answer him, ’Lord when did we see you hungry and feed you, or thirsty and give you soemthing to drink?…Or needing clothes and clothe you? When did we see you sick…”

”The King will reply, ’Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.”

As much as I want to be Jesus and give my boys the miracles they so desperately need, that is not my role. My job is to love them fiercely, the way that Christ loves them. I am to imitate and show Christ to them so when they meet the real deal the they run towards Him with open arms. And in a world of unknowns and impossibles, that is a role that I can focus my energy on.

My prayer this week is a selfish one…that God gives me His eyes and allows me to see myself through His lens. To be able to get a glimpse as to why God has entrusted me with such a heavy but beautifully imperfect journey. The blessings far outweigh the difficulties but when I am swimming through rapids I can’t seem to get my mind on anything else.

And please pray for Malachi, that he fully heals and God protects all of us from Jake’s cold. Pray for a week of strengthening both physically and emotionally.

Much love,

Leah

Perfectly Imperfect

Thanksgiving week is here! Where we live in the south they close schools for the entire week and the break truthfully couldn’t come at a more needed time. Malachi is back to rough nights and seizures. He always struggles when the seasons change. Having Jake home to hand him off to in the mornings is such a blessing.

One of the most challenging parts about the special needs world is dealing with the unpredictability of it. Routines are not easy to establish when you are battling epilepsy and one seizure can change the course of the entire day. I have learned not to plan too far in advance to prevent myself from feeling disappointment and frustration when things don’t go like I envisioned they would.

Malachi had to have some work done on his orthotics this week and Levi has outgrown his! With Malachi’s AFOs they can heat up the material and remold it when it gets too tight and starts causing pressure sores. Levi’s are shoe inserts so we can’t modify them but rather just order the next size up.

We did get some fun news this week- a few weeks ago I wrote a letter to a local grant board about using some grant money towards a golf cart/UTV for the boys so we could spend more time outside and on family ”walks”. It will also make outings to non-handicap accessible settings something that Malachi can now do. We have to say no a lot these days because it is logistically not possible to get Malachi there, and the larger he gets the less safely I can carry him for long distances.

We received the formal approval and have been working with a local company to find the perfect machine for the boys needs. We are planning to pick it up this week and Malachi is absolutely thrilled. When we went for a test drive he got the giggles just sitting in it. Then we drove it for a bit, him smiling ear to ear the whole time. I turned to Jake and said “I guess we need to go back now.” And when Malachi heard that he started crying crocodile tears. He DID NOT want to stop riding it, and he cried the whole way back to the parking lot.

We did let him choose the color, which he was excited to do signing no for red and blue and a hearty yes for black.

Education moment: Grants. There are several organizations around the country that like to help in situations like ours. They recognize that much of our income goes towards the non-fun medical things, like appointments, therapies, and procedures. The offer small amounts of money in the form of grants that you can apply for and use for the things insurance often does not cover (diapers, medical tapes, specialized equipment, etc) There is an excellent grant in Chattanooga for surrounding counties and we have been blessed to receive it for Malachi since he was 2 years old and Levi since birth. Each year we have applied we have been granted $2,000 for each boy each year. Initially I used those funds for medical things but as the years went by Jake and I changed our mindset to ”quality of life” things that enrich their everyday. Things that we dream of for our boys but could never justify depleting savings on.

We have used it towards the therapy pool, the playground, switches for Malachi, adult sized changing table for Malachi, tube friendly onesies for Levi, special mattresses and beds for safer sleeping, specialized formula, medical tape, oxygen concentrator, etc. We applied for other grants when Levi was born to help with some of the extra medical expenses incurred from being in the ICU for 131 days. The applications are typically tedious and long but I understand why.

The insurance side of special needs is brutal and often offensive. For example, we received a denial for a bath chair for Malachi to help support him for showers because they said it was a ”comfort item and not medically necessary”. This week we received a denial for a chair for Malachi we ordered in July because we already had a chair (that he has outgrown and Jake and I paid for out of pocket) that should be sufficient. These companies are most definitely not on our side for things, so finding grant companies willing to help and make things easy are a breath of fresh air. We spend months meticulously planning what to spend the granted funds on, and being able to dream about some bigger items and projects we could do is actually really fun.

There are some weeks that I am more emotionally fragile than others and for some odd reason this was one of them. Throughout the week I felt like I was on the verge of tears but I couldn’t seem to figure out why. Last week was Levi’s birthday, which usually equals a fragile week but the emotions stalled for a week.

I have been reflecting so much on our journey with him and remembering those hard conversations surrounding his birth and diagnosis of bilateral vocal cord paralysis. The only option we were presented was to put in a trach and a g-tube and wait and see if he was part of the 50% with this diagnosis whose vocal cords “wake up” and are no longer paralyzed. If this will ever happens it happens by the age of 5.

Levi just turned four last Sunday and his vocal cords are still both paralyzed. We have not seen any improvement in those vocal cords and our chance for ”normal” function is whittled down to less than 365 days. And as much anxiety as this brings me now I can’t imagine what life would feel like had we followed through with a trach. The reality that he would need it for a lifetime would have most definitely been hard to take in.

Thanks to some brave surgeons and a rough start in life, Levi will be able to live life without a trach. But the diagnosis is still there and the dysfunction still exists. The specialist appointments, the surgeries, the continual monitoring will continue until those cords start moving. Oh how I long for an easy life for him. The reality of hitting 4 knowing that the final outcome is determined by the age of 5 hit me in a weird way this week.

This week I took Levi into Hobby Lobby for a few minutes to grab one item. We walked straight to it and then straight to the cash register but on the way there Levi and his busy hands found a very breakable decor item on a display near the floor and I watched it domino with a crash. My internal voice was willing ”Don’t be broken, don’t be broken” but as I picked it up off the floor I saw that the damage had been done. Levi was wide eyed, knowing he did something bad but also knowing he didn’t intentionally do the bad thing. I was admittedly frustrated and explained to him that when we break things that aren’t ours we have to spend our money and buy them.

We got up to the counter and the cashier scanned the item as I crossed my fingers hoping for a 50% off miracle on this weird and now broken item. I explained the accident, hoping for a little Hobby Lobby grace but also knowing that doing the right thing with Levi watching was more important than saving $9.99. But it rang up as full price and in comedic fashion the cashier very gently wrapped the broken item in paper and put it tenderly into a bag.

When we got home I pulled it out and put it up on the windowsill, not quite sure what to do with it. Even whole I would not know what to do with it haha. And each time I looked at it throughout the week I felt a pang of bitterness that I paid full price for such a broken item.

I was doing the dishes a few days ago and looking at the odd little figure and it suddenly hit me that this was such a parallel to our journey with our children. As society we assign value to whole, perfect, and typical. The slightest blemish on an item and we expect to see it sent to a clearance bin or taken to a manager for a price reduction. Our eyes no longer see it’s worth or value.

I thought of my two beautiful boys, each with their own blemishes and differences. Each with spots of damage speckled in their brains. Each with whole body issues because of this brain damage. Each with layers upon layers of diagnoses. Many look at them in the same way I look at this figurine…less than and damaged.

But God has taught me through each of their testimonies that there is so much unique beauty in the broken. The things we deem as broken God sees as uniquely and wonderfully made. Sometimes God’s creations don’t look like the rest on the shelf, but it is through those pieces that stories full of God’s goodness can be written.

We were created in God’s image. Not his physical image, but rather a reflection of His character, His qualities, and His goodness.

I am going with a well known verse for this evening’s devotional thought:

Psalm 139

13 For You created my innermost parts;
You wove me in my mother’s womb.
14 I will give thanks to You, because I am awesomely and wonderfully made;
Wonderful are Your works,
And my soul knows it very well.
15 My frame was not hidden from You
When I was made in secret,
And skillfully formed in the depths of the earth;
16 Your eyes have seen my formless substance;
And in Your book were written
All the days that were ordained for me,
When as yet there was not one of them.

17 How precious also are Your thoughts for me, God!
How vast is the sum of them!

When I read these verses and apply my son’s names into the pronouns I find myself feeling ashamed for mourning over their differences. Yes, it was something I never expected to receive- I expected whole and perfectly formed and functioning. But God formed my children and their differences were also skillfully formed…which means they are perfectly imperfect. And He made them in His image, to bring Him glory and honor. Why do we place so much emphasis and value on the seen qualities?

I know by now you are likely rooting for the random Hobby Lobby bathroom man mascot that sits on my windowsill. I can’t promise you that he will find a home here, but I can promise you that God intended to use him to remind me that His eyes and my eyes don’t share the same vision. And just like the creepy figurine in my window, my children have been gifted with journeys and stories that leave the fingerprints of God wherever they go. What a blessing a life full of God’s fingerprints can be.

This week my heart and eyes are set on looking for the imperfect things in this world and seeing their God given value, as hard as that can sometimes be.

Much love,

Leah

Spirit Is Willing

Happy birthday to our sweet Levi. This week I have been really thinking about the plans God has in store for Levi and my curiosity has been flaring. Watching him move steadily through the milestones and stages of life has brought a healing to my heart…I always feel bad admitting things like that, as if stating it de-values my journey with Malachi. If you know me you already know I treasure every bit of my Malachi, even the hardest parts of our walk as they have heated my up and re-molded me into a new creation. Levi’s journey has just been so incredibly different and those effortless moments of progression are so energizing.

Levi’s empathy is unmatched for a child his age, and undoubtedly having a brother that needs some extra help often has something to do with that. It is rare that Levi doesn’t cry during an episode of Daniel Tiger as he feels all of the emotions from each character. He celebrates Malachi’s achievements more than his own and is his brother’s biggest fan. Levi started playing basketball this week and he was more excited about Malachi getting to help ”coach” then he himself being able to play. He also chose to go bowling this afternoon for his birthday and Levi celebrated Malachi’s bowling achievements way more than his own. What a blessing they each are to one another.

Speaking of basketball, oh boy. First of all, check out this baller in his jersey and new birthday basketball shoes.

And now let’s talk about how much fun we had watching him play. There’s our #12 playing some serious defense.

He has zero basketball knowledge and lots of soccer knowledge so when they use the soccer terms he knows (pass, dribble, shoot) he defaults to his footwork. He would set the ball down by his feet so he could obey what they were asking him to do. We have several funny videos but here is one of my favorite ones; the coach told him to dribble:

And this one when the coach told him to pass it:

But he absolutely loved the idea of being on a team, practicing, and games and it has been a talking point all week. Seeing his excitement to put on his jersey and go to practice was just precious.

Malachi is definitely dealing with some jealousy and we are starting to enter uncharted waters that need to be navigated delicately. I explained to Malachi that Levi’s team was only for the younger children but that he could also get a jersey to wear to the games and he could help coach. We programmed his recordable switch with a whistle and his job is to blow it any time the other coaches blow theirs. He likes the game of listening and trying to be on his A game. I took a video of him as well and it makes me smile:

We let Levi pick out some activities for his birthday and stop #1 was bowling at his request. He lasted about 6 frames which was longer than I anticipated.

Malachi wasn’t “into” it until I informed him he was beating Levi. Then he really came back to life quickly. The empathy thing I mentioned before is most definitely a one way street with these brothers. And Malachi has a spirit of competition in him. He was very particular about wanting to bowl without help from mom and dad so we try to be as hands off as possible after we set him up for success.

After bowling I told Levi he could have a special birthday treat; anything that he wanted! I offered suggestions like pizza, mac and cheese, ice cream, a slushee…

And he was insistent that his one and only birthday wish was a kids ice water from McDonalds. And that is just what he got!

He got a ”need” gift with his basketball shoes and a “want” gift with a pack of superhero costumes for him and Malachi to share. And he was one happy birthday boy!

Levi’s g-tube had been causing some irritation over the last few weeks so the doctor upgraded us to a slightly longer stem. They came in the mail this week and when I opened the box Levi knew from experience exactly what was about to happen. He started crying but then shocked the socks off me by requesting that we put the new one in right away. What a good sport he was! Then today the new balloon burst and his g-tube slipped out. So he had to do another tube change but again he impressed me with his newfound maturity to understand when things just have to happen.

Malachi’s seizure control has been so so so good. He is still having daily seizures but most of them are very short and less intense.

I have been working so hard to try to get him into bed earlier than his typical 3am. We are slowly making progress and last week he was averaging between 5-6 hours each night, hallelujah!

Malachi also spent a few afternoons at school this week. I asked him on Wednesday if he wanted to go to school and he signed no. But Thursday and Friday was an adamant yes. He is only going for about two hours each day, twice a week. Even that brief period of time tuckers him out.

As usual, today has bubbled up so many emotions and memories for me. Some of the most amazing moments in my life also qualify as some of the most heartbreaking. Motherhood has been such a unique blend of joy and mourning and birthdays are such vivid reminders of that blend.

I will never forget the heart flutters I experienced when I laid eyes on this photo for the first time.

I was not awake for Levi’s birth and Jake had this photo to share with me when I woke up from surgery. I remember so much anxiety lifting from my shoulders when I saw this photo and felt the emotions rising up from the base of my throat. I thought he was one of the most beautiful things I had ever laid eyes on and I don’t even remember seeing the ventilator tube. All I could focus on was his healthy color and how much he looked like a healthy baby.

Today Jake and I were talking about our crazy life and I was explaining to him how lately I have felt like I am in an inner tube racing down a raging river. I have no paddle and no control over where I am headed downstream. I can only see a few feet in front of me on my journey but there are lots of bends in the river with surprises waiting, some good and some bad.

When I first ended up in this inner tube I panicked. I fought against the river, exhausting myself against its current. I wanted out because I wasn’t equipped for the journey. But as much as I screamed and pleaded with God about my inadequacies He did not stop the inner tube. Everytime I hit a rock and sprung a leak I tried to use it as evidence to God that I was not equipped. But he covered the hole and asked me to keep floating and trusting in Him.

I am at a point where I have embraced and made friends with the river. The river has calm waters and the river has rapids. But the river is ever flowing, carrying me somewhere new.

Greek philosopher Heraclitus said ”No man ever steps in the same river twice, for it’s not the same river and he’s not the same man.”

I could spend time breaking this down for you in terms of my life, but I feel like it just needs to simmer in your mind and my time is meant for more biblical things…

Mark 14:38 ”Keep watching and praying, so that you will not come into temptation; the Spirit is willing but the flesh is weak.”

I have been really processing these words. The spirit is willing, but the flesh is weak. It is such a simple sentence yet oddly profound.

This sentence came from the mouth of Jesus after He had instructed His disciples to keep watch while He went to pray before His arrest. When He returned and found them sleeping you can hear almost a tone of exasperation ”Simon, are you asleep? Could you not keep watch for one hour? Keep watching and praying, so that you will not come into temptation; the Spirit is willing but the flesh is weak.”

This verse summarizes me very well this week. My spirit longs to be used by God in big ways. I desire a thriving and effective walk with the Lord. My spirit is oh so willing.

But my flesh is also so weak. So incredibly weak.

This verse says a few key words at the beginning…”Watch and pray”. I realized this week that I am not doing nearly enough watching and praying these days. I let down my guard and allow the enemy to sneak in. The action it takes to be a follower of Christ is an every second, every minute, every hour action. It is not a passive role.

Christ’s words for His disciples could very much be the same words He has been laying on my heart: ”Could you not keep watch for one hour?” And in my laziness and my distractions I have allowed my spirit and my flesh engage in battle.

Galatians 5:16-17 ”But I say, walk by the Spirit and you will not carry out the desire of the flesh. For the desires of the flesh is against the Spirit, and the Spirit against the flesh, for these are in opposition to one another, in order to keep you from doing whatever you want.”

My desire this week is to end the battle, even if it be ever so brief, between the flesh and my spirit. That is a war that will continue to wage within us for our time here on earth. And it is a war we accidentally find ourselves in the middle of sometimes without intentionally enlisting, but it is a messy one nonetheless with lots of casualties.

This week my motto is: Walk by the Spirit, walk by the Spirit, walk by the Spirit.

When I am focusing on walking by the spirit my mind will be too engaged to focus on the things of the flesh.

I know I am mentioning some pretty meaty words and concepts in this week’s blog, If you ever have any questions about some of the ”Christian terms” I have been tossing at you please don’t hesitate to email me at jacobandleah@gmail.com

Thank you for listening to me ramble each week without complaining. You all are a very special bunch and my family is very blessed to have such a great support system.

Now off to bed! Much love,

Leah

Godly Wisdom

After staring at this screen for a ridiculous amount of time the same sentence just keeps coming to mind: I am weary.

Special needs life is hard. It is obviously hard during the emergencies, the surgeries, the sickness. But it is also hard during the typical and mundane weeks. This life requires weird routines and schedules and there are certain locked in things into my everyday. For example, Malachi wakes up coughing every single morning. He has a hard time managing his secretions and doesn’t know how to clear his throat like you and I do. It takes him 1.5-2 hours of venting his tummy to get him in a safe place to keep down any food or meds I try to get in him. If I don’t follow this routine he vomits up anything I put in him. Then after the meds and food go in it requires at least another 45 minutes of holding him upright on my lap and periodically burping him like a baby to get him safe enough to leave the home. If we don’t get all of his burps out he seizes repeatedly.

Nighttime routines are even more mentally challenging. If you have ever had a newborn you can relate to that moment when you have rocked the baby to sleep and laid him down in the crib only to have him wake up two minutes later. That feeling of success being snatched away so quickly can be discouraging. Malachi has been pulling this trick since he was a baby but now he sets into a seizure instead of simply just waking up crying and needing to be soothed. It takes about 45 minutes to get him to sleep again and we play several rounds of this game each evening. Some nights we are in bed by 3am. Some nights 5:30am.

I am weary of the known routines. I am weary of worrying about the unknowns. Our life requires a level of acceptance and surrender that I am not always eager to offer up, especially this week. Which is why I am so weary.

We are spending a lot of time at home these days, going on drives often to get an opportunity to look at something other than our four walls. Malachi spent two afternoons at school and boy is he growing! I snapped this photo before he went in one day because I couldn’t believe how long his legs have grown.

This week little Levi starts his basketball league and I am excited to see how it goes. He is eager with anticipation, as is Malachi who is helping coach! He talks about it every day and seems very concerned about making sure he has “basketball shoes” haha. Finding shoes that fit his braces is harder than you would imagine!

Levi is still as inclusive as can be, always looking for ways to make Malachi giggle. He will crack a water bottle for him so he can hear the noise and say ”Does Malachi like that?” We always encourage him to ask Malachi questions and report his answers to us. Their relationship is so special. Levi continues to ask a lot of questions about Malachi that we knew would come one day- like why Malachi doesn’t walk and why he doesn’t talk. He seems pretty satisfied with our answers for now.

It seems hard to believe, but Levi turns FOUR next week! It is hard to remember a life without our Levi, and he has brought such joy to our family. I will save the sappy post for next week’s blog.

When I am weary it makes the lens I view the world just foggy enough to cause confusion and second-guessing in multiple areas. One of those is spiritually. We have been having such great God moments in our ministries over the last few weeks and the fruit God has been growing through them is such beautiful, vibrant fruit!

But as the fruit grows, the devil takes notice. And when you are weary those attacks have opportunities to find gaps in the armor.

This week I have allowed myself to be wounded, which I am ashamed to admit. And the mental mind game that has created has consumed me. When that happens there is no better solution than digging into the word of God. I spent some time in the book of James this week and as I read the Lord spoke to my heart.

James 3:13-17 ”Who is wise and understanding among you? Let them show it by their good life, by deeds done in the humility that comes from wisdom. But if you harbor bitter envy and selfish ambition in your hearts, do not boast about it or deny the truth. Such “wisdom” does not come down from heaven but is earthly, unspiritual, demonic. For where you have envy and selfish ambition, there you will find disorder and every evil practice. But the wisdom that comes from heaven is first of all pure; then peace loving, considerate, submissive, full of mercy and good fruit, impartial and sincere. Peacemakers who sow in peace reap a harvest of righteousness.”

Oh, how I crave that godly wisdom from heaven!

In my weariness this week I watched my pride and my anger flare as I filtered it through my earthly wisdom. But godly wisdom is full of humility, love, and mercy. It goes against our nature and requires us to become vessels for Christ to work through.

I don’t know if any of you also needed to hear this verse this week and be reminded that God calls us to be peacemakers, as hard as that can sometimes be.

May we all continue to pursue godly wisdom in our daily walk and feel the power of Christ in our moments of humility. And please pray for an easy, healthy week for the Carroll boys. Momma needs sleep, but even more I need some mental and emotional rest.

Much love,

Leah

Passive Participation

So sorry for the late post this week! I kept trying to write it last night but my brain wasn’t clear enough to formulate words. Right now there isn’t much of a day/night differential and we are working with fragments of sleep.

We have officially dropped a seizure med from Malachi’s regiment! This is a very rare thing in our world and something that warrants celebration. After a painfully slow titration we were finally able to stop the medication last Tuesday. We did have some breath-through seizures but he is down to only having at most 4 a day, and the ones he is having are so much more mild. He is still having nighttime seizures into the pillow but even those seem to be less aggressive than a week ago.

Almost immediately we saw Malachi’s personality come back. He started acting goofy again, something we haven’t seen much of since pre-surgery/liver failure in late July. His eyesight has improved dramatically and he has been more vocal. He is also trying to hold himself up more.

There is always a delicate line we waver on as special needs parents. Yes, I could continue to fiddle with medications and reduce his seizures a bit more. But in doing so I also “lose” my Malachi and his beautiful personality and joy. So we choose which sacrifices to make on his behalf, allowing his quality of life to drive our decision making. I catch myself second guessing nearly every decision that we make in this arena but in the end I see such happiness in his eyes encouraging us to continue on the path we are on.

Along with these amazing changes that we are seeing we are also seeing so. many. opinions. Malachi has an opinion about EVERYTHING. Usually we give him three options to choose from and he settles for one. But this weekend it was his turn to choose the game for family game night and it took us 8 attempts to get to the one he had in his head that he wanted to play. We finally said ”Sorry” and he signed YES YES YES!

He also got to go up the road for a movie date with the neighbor girls. One of the older girls narrated Star Wars to him; he will get to go back up for the second half of the movie soon. I think he was more excited about getting to go over there by himself than the actual movie, but having those opportunities and friendships for him is such a blessing.

I am still not sleeping much these days, so we didn’t get too adventurous this week. I spent the time at home continuing Levi’s potty training which keeps me ridiculously busy. That boy sure can pee….like 53 times a day. But his pure joy each time he successfully uses the restroom is so sweet to see.

Tonight we held our first annual ”Holy Ghost Wiener Roast” for our youth group and their families with the help of our very kind friends that own a farm. Levi’s anticipation for the event was so intense he could barely sleep. He has become so social and sees all of the teenagers as his own personal friends.

And Malachi is always game for a hayride and some time on the playground with friends. He loves to soak in the sounds, smells, and noises!

The holiday season is officially beginning and each year I find myself evaluating what it will look like for our family. It is so incredibly easy to let society dictate what our holidays focus on and look like. On that token, I heard a term this week and it has really pricked my brain.

Passive Participation

If I am not being watchful and intentional I notice that we very quickly become passive participators in the world. And as harmless as passive participation may seem, it still makes us look a whole lot like the world we are not supposed to resemble.

As Levi gets older I find myself questioning my parenting choices on simple matters like Halloween. There is nothing inherently wrong with dressing up in costumes. There is nothing wrong with desiring free candy. But the Holy Spirit tells me that our family is supposed to look different from the world and nudges me that this an easy way to teach my boys about unfruitful things and the temptation to passively participate.

Ephesians 5:6-11

See that no one deceives you with empty words, for because of these things the wrath of God comes upon the sons of disobedience. Therefore do not become partners with them; for you were once darkness, but now you are light in the Lord; walk as children of light (for the fruit of the light consists in all goodness, righteousness, and truth), as you try to learn what is pleasing to the Lord.  Do not participate in the useless deeds of darkness, but instead even expose them; 

I believe so strongly that the devil is very hard at work during the holiday season, trying to get us to believe that the we are the center of the world. He shines a spotlight on our selfishness and whispers in our ear that this is ”tradition”. My heart desires so much to teach my children to spot those moments where we want to become ”partners with” the world like the verse mentions and instead ask what God wants us to do. Even when that means He calls us to be counter cultural.

I am not by any means condemning or judging any decisions you may make for your family! The Holy Spirit can speak differently to each of us, and I am not going to assume that the things He presses firmly on my heart are also being pressed on yours.

My desire in writing this is to encourage you to self evaluate and find the areas of your life that you have become a passive participant. Whether it be a habit you have convinced yourself is harmless, an activity that you participate in without a second thought, a friendship you continue to cling to…anything that produces unfruitful moments in your life or anything that encourages you to pursue paths that might be shadowed because their aren’t fully in the Light.

Spot them, name them, and replace them. Become intentional in your pursuit for the will of God in your life and your family.

For our family that includes questioning things the world tells me are traditions, rites of passage, and important. Holding them up to the Word of God and asking God specifically what He is calling us to do. What a special and serious privilege it is to raise children to be sensitive to the Holy Spirit. And oh how thankful I am for the grace of God when I mess up in this role!

Much love,

Leah

The Shepherd’s Voice

This has been a special needs momma week. Those are the types of weeks when we shut off all emotion and go into autopilot mode taking care of medical needs and trying to keep everyone alive. It always sounds so dramatic to word it that way, but the lifesaving moments have been happening every single night as we deal with Malachi seizing hard and contorting his face into his pillow. We are on night 7 of Malachi needing a lifesaving face turn in the middle of the night and the pressure of that is so so heavy. Interesting side note- they all happen at the EXACT same time chunk after I lay him down for bed, like clockwork regardless of what time he lays down. The brain is such an interesting thing. We are sure that this change in seizures is linked to our medication wean we have been working on and will hopefully level back out to his normal soon.

But in addition to that craziness, Levi starting running a fever on Monday evening prompting a trip to the doctor Tuesday morning. Another ear infection which they think is caused by some allergy post nasal drip. He tested negative for all the potential biggies but had a very red throat. He kept saying ”Mommy make it better” while sobbing- it was so heartbreaking.

We started antibiotics for the ear but postnasal drip is always an enemy to Levi’s airway. Anything that touches his throat inside unexpectedly causes vomiting. We slowed down his rate on his g-tube but it still didn’t slow down the vomiting all day and all night. That leads to no sleep, dehydration, and constipation. Most nights this week he was up until 4a-6a until he would finally pass out from sheer exhaustion. He wanted me in the bed with him for comfort, but his bed has high sides that block my view from Malachi. With our weekly seizure struggles I knew I couldn’t be away from him so we rigged up a setup in the big bed and did the best I could to keep everyone comfortable and breathing.

I canceled all of our appointments this week and we hunkered down at home. When Levi is vomiting so much we place old towels strategically around the house and do lots and lots and lots of laundry. As the end of the week rolled around Levi started being able to tolerate more of his g-tube feeds and acting much more like himself.

His vocabulary is growing by the day. The words and phrases he throws out bring so much joy to my heart. I have never known the joy of language development in the parenting journey and I am cherishing it more than I realized. When you have one child that is desperate to communicate but can’t it makes each word a beautiful gift from the Lord. It also serves as a reminder of Levi’s miracle; the voice we were told he would never have due to his surgery.

We are also seeing more of his quick wit and humor. His imagination is a vivid one and he does a lot of pretending and I see a lot of myself as a child in him. We used this week to work on more potty training and we are so close!

I was most definitely in survival mode this week, taking naps whenever and however. Tonight, for example, I took a nap from 9p-10:30p to try to get a burst of sleep before tonight’s challenges begin. Malachi is staying up until at least 3am right now and with Levi staying up even later than that we abandoned any idea of day and night. I have a phrase I use often, “You will never have to repeat the exact same 24 hours” and I have repeated that one often this week.

I have to be honest, I have gone back and forth on whether to share the next chunk with you. I always check my motivations for anything that I include on these posts, as I know the devil can take even the purest intentions and pollute them with self seeking tendencies. But I know deep in my heart my motives are pure and the thought I feel led to share with you is something God has placed on my heart.

As you read above, this week has been a frustrating one. But I can’t say I didn’t see it coming.

Rewind a bit to late July. God had led me to hold a girls retreat in the basement of our home for our high school youth. I had lined up a speaker and sent out details…then Malachi ended up having emergency surgery.

I felt SO strongly that this retreat was still meant to happen. We were scheduled to get out of the hospital on a Thursday and the event would take place Saturday. I sent out the text from the hospital that the retreat was still on!

That was the day that Malachi’s liver failed. I was so frustrated and disappointed about having to cancel the retreat but also felt so much confidence in my heart that this was a calculated attack from the devil. He did not want this retreat to take place. And he was going to do everything in his power to stop it from happening.

We chose a new date but then covid hit our home. So back to the drawing board and we started planning the retreat for late October (this past Saturday). As we inched closer to the day I sensed the devil poising for another attack. When Levi’s fever started I wasn’t shocked. As the week continued and I was running on fumes and fragments of rest I could hear the suggestions and excuses the devil was planting on my mind.

The louder the voice of the devil grew the more firmly I stood, knowing that there wouldn’t be this much resistance to something that wasn’t meant to be spiritually significant to someone at that retreat.

Scripture from 1 Peter 5 played in my mind on repeat as the week ticked by:

“Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you. Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith…”

Standing firm in the faith. This phrase makes us sound superhuman, but in reality the firmness it references is the mighty hand of God backing you up. Standing firm in the faith is an act of humility, recognizing that your power is insufficient and asking God to lift you up.

Anxiety is not of God, in fact I believe it to be an enemy of God. It feels so insignificant but its power is monumental.

So this week I continued to speak to God about the retreat and felt in my heart it was still meant to happen. And by golly it happened! We had such a God glorifying time filled with worship and some really faith challenging talks. We even somehow got a whole bus of high school girls ready and out the door for church on time this morning. I had a little God wink this morning as Malachi slept in- something he hasn’t done in months. It allowed me to prepare breakfast for everyone and focus on being present this morning.

Praise be to God!

In place of hosting teen Bible study tonight we opted to take the show on the road, scheduling paintball for the rest of our youth.

I will tell you, my two boys have had the absolute BEST time this weekend. They love spending time with the big kids. Levi was the welcome wagon this morning, sneaking down into the basement to wake up the girls for church. I have been really processing lately that his testimony has already begun. It has for all of us. And what a great treasure it is to get to watch his unfold. I wonder which parts of his upbringing will be instrumental in his testimony of knowing the Lord. Exciting times!

Back on track to the roaring lion devil…

The devil is a liar. And a smooth talker. His attacks often are disguised as “looking out for your best interest” instead of menacing and obvious.

The devil’s voice has a tendency to be loud. And oftentimes for me, God’s voice is a gentle and quiet whisper. If I am not being cautious and aware I can hear what I want to be told. I can hear valid excuses, comfort, potential opportunities to catch up on sleep. The devil knows what my heart longs for and promises it to steer me off God’s course.

But God’s voice calls for self sacrifice and obedience. He calls us to follow HIS vision and not our own. He calls for our humility and our dependency on Him.

If you need a good devotional scripture chunk this week I encourage you to read John 10. In it Jesus talks about the voice of the Shepherd and has so many beautiful reminders for us. But I want to leave you with these specific verses:

“But the one who enters by the door is a shepherd of the sheep. To him the doorkeeper opens, and the sheep listen to his voice, and he calls his own sheep by name and leads them out. When he puts all his own sheep outside, he goes ahead of them, and the sheep follow him because they know his voice. However, a stranger they simply will not follow, but will flee from him, because they do not know the voice of strangers.”

Do you know the voice of the Shepherd? Can you recognize it in the darkness of your life, even when you cannot lay eyes on Him? If this is a struggle the best place to start is by digging into God’s Word. Read the words of Jesus. Highlight, underline, and take notes.

I know there are parts of Christianity that can be confusing, and the many Bible translations are definitely one of those topics. The original scriptures were written in Hebrew, Greek, and Aramic. People will always argue that their English version is the best, the most accurate, the most God honoring.

But God doesn’t rely on translations to speak for Him. I believe that when you seek Him, regardless of the translation you choose to open, God is able to speak loudly and clearly to your heart.

If you are new to the Bible I recommend starting with NIV or NASB. If you still have trouble try the Message translation. I grew up with the King James Version. At this point in my walk with God I often look up the same scripture in several translations and allow each of them to saturate in my heart.

But regardless of the version you choose, make it a point this week to look in His Word! Learn His voice. It is beautiful and life transforming.

Much love,

Leah

The Narrow Road

This week we tackled some much needed appointments for both boys so we will start with some quick health updates.

Malachi went back to the neurologist this week and we have a plan in motion for weaning off of one seizure med while simultaneously increasing another. This is great news, but also a very sensitive transition. Changing seizure meds and changing doses can lead to breakthrough seizures, and while we don’t have ”seizure control” per say right now we don’t want to make things worse. I started decreasing the med we hope to eliminate and it has led to an increase in seizures. I will give it another day or two but if he doesn’t level out it is safe to assume we were too aggressive with the wean and we will have to back up and try again.

Our nighttimes have been pretty rough for several months now with Malachi staying up until 3am most nights. His brain is just struggling so much to level out.

Malachi did have to have some blood drawn to check his liver enzyme levels and I am happy to share that those levels looked great! He usually handled blood draws like a champ but really struggled with this one leading to lots of tears. Levi had a hard time seeing Malachi so sad and watching him trying to comfort him was so heartwarming.

Both boys went to see the gastroenterologist (we shorten this to GI doc) this week. This was the first time we have seen him since Malachi’s inpatient stay so we had a lot of catching up to do. Malachi lost a significant amount of weight due to his surgery and contracting covid and the scale shows that he is 34 pounds. According to the charts he is nowhere near where an 8 year old boy should be but that doesn’t surprise us a bit.

Levi has officially passed Malachi’s height and weight and is in the 75th percentile for his BMI. He is actually doing so well that the doctor has us cutting his daytime feeding pump sessions down by two. This is a pretty big deal! He is still fed continuously at night but even that is proving to be a challenge this week as he has started sleep walking a bit. He is in a bed with very high sides to keep him from rolling out and dislodging his tummy tube but the last few nights he has been standing up in the middle of the night and teetering near the side of the bed. I sleep lightly with the boys and have been able to get to him each time before something bad happens but it still isn’t an ideal new habit with a g-tube.

Speaking of tummy tubes accidents, here is a sweet picture of Levi before church this morning. Five minutes after we dropped him off at children’s church the teacher brought him to us in the service- his tummy tube extension had popped open and somehow was unclamped. Milk had poured out of his belly and all over his khaki shorts, so he ended up with the ”car shorts”- that one pair I keep in the back for emergencies. At least I got a cute photo before the chaos hit!

We wrapped up our soccer season this week and we pause all sports for a few months to regroup as a family. After the new year God has led me to start a children’s soccer ministry in our community, teaching both the sport and lessons about God each practice and game. Jake will be coaching the high school boys team during this time and we will also be running our adult indoor soccer league at the church so I recognize life is going to get wild, but when God calls me to do something I walk in faith knowing He will provide the energy and ability to see it through.

On Thursday and Friday Malachi spent a few hours at school at his request. Levi and I went into town and ran errands while we waited to pick him up and I tried to catch up on all the things that are exceptionally hard to do with a wheelchair and another toddler in tow.

Simply getting Levi out of the car and carrying him into a store was such a unique experience. I just felt so…normal. As we wheeled down the aisle with Levi in the cart I had people make eye contact with me and stop to interact with Levi. They complimented his hair, asked him his age, and smiled with their face and their eyes. I know that sounds like an odd thing to mention but special needs moms rarely get eye contact from strangers. We get awkward shuffles out of the way and we get lots of well meaning comments (“Wow you have your hands full!” or ”God gives special children to special people.” etc)

The anonymity I felt this week as just a typical mom was really refreshing- but then when I realized it was refreshing I felt a pang of guilt as if I were cheating on my special needs momma self. I love my unique motherhood journey and I have accepted the role that God has placed me in, but the social encounters this week really made me think.

I have been thinking specifically about relationships and how isolating our world can get. We have a wonderful community support system but sometimes it feels like we have worn out our welcome and we tend to see friends slowly start to drift away. Friendship with our family is a lot of work and we tend to ”bleed” onto those around us without intentionally doing so. I know this potential for friendship destruction exists so I catch myself trying to bubble wrap my friendships and not let always see the hard parts of our lives. I shield them away for fear of losing another friend, but in turn that leads to a superficial friendship that doesn’t last.

The psychology of rejection is something that has a grip on me. I don’t know if any of you share that same struggle. Each time I think I have overcome I am reminded by a circumstance or a memory that I have not fully healed from the many moments of rejection in my past from people I loved.

But I am coming to terms with the idea that God never intended us to blend in. And He provides a continual reminder in His word that our reliance should be placed on Him instead of others.

I can apply this thought to my family specifically, as God has clearly written us a novel that I have never seen in a bookstore.

But I can also apply this thought to the way we are called to live our life. When we strive to fit the mold of the world we will never be fulfilled. I think about those encounters with strangers in the store this week and how yes, it was refreshing but in the end still so unfulfilling. The devil used that temporary high in my heart to plant potential seeds of bitterness.

Matthew 7:13-14 ”Enter through the narrow gate; for the gate is wide and the way is broad that leads to destruction, and there are many who enter through it. For the gate is narrow and the way is constricted that leads to life, and there are few who find it.”

As a child of God I have chosen to walk the narrow road. It seems to foolish to now that I acknowledge that to complain about how narrow and sometimes isolating that road can be. As I reflect back on relationships that have dissolved I can’t ignore how toxic many of those friendships were in my walk with the Lord. Sometimes we foolishly mourn over branches that God has clearly pruned from our life to allow healthier fruit to grow.

Instead of looking for eye contact from strangers for encouragement on the road I need to make eye contact with God- because in the end that relationship will never dissolve. God welcomes my mess as He recognizes that He is the one who entrusted me with it.

I feel like I am off my blogging game today. We had record breaking numbers at our home Bible study last night with over 50 people! Praise the Lord!!! My brain didn’t have much energy left for blogging on my normal Sunday night routine. I will just have to trust God that He will speak to you through something that was said!

And please pray over our parenting journey as it continually evolves. As Levi is getting older we are discovering new challenges with parenting Malachi. These challenges are bringing new grief to all of our hearts as we navigate brother jealousy.

Sincerely,

Leah

Renewed Day By Day

With Jake off for fall break we decided to get the kids out of the house and embark on an adventure! Traveling with the boys is always complicated but after the few months we have had we felt like a change of scenery might do us all some good. We headed to Pigeon Forge and spent two nights being tourists just two hours from home.


Our trip was a little bit of sweet and a little bit of sour. We had some really great moments and an equal amount of emotionally challenging ones. 

We started the trip with a visit to a dinner theater called the Hatfields and McCoys. We have seen this one in the past but when we let Malachi choose which show to go to he voted to see it again. When we take his wheelchair into theaters like this one our seating is limited to the corners and top levels. Malachi is legally blind and cannot see anything from most of those spots. We decided this time to carry him in and take turns holding him so we could sit front and center in the “splash zone” (you get wet when the characters jump into the stage pool). Malachi was so excited and very much into the show when he went into a very aggressive seizure. After several minutes and him still being stuck in his seizure I quietly raced him out the back to try to reduce the stimuli. He finally stopped seizing and I asked him if he would like to go back to the show he signed yes. He did not have another seizure but him being in that one for so long depleted him of all energy. He tried hard to pay attention but his little mind was just tired. 

On the way to the rental house we stopped by an inclusive playground and tried out some of the cool options they had for children with disabilities. Levi spent the time going from child to child asking them “Do you go to church?” And getting some strange looks back. Jake and I laughed at our tiny evangelist. 

The next day was our biggest adventure day and we found a local company with a lot of activities offered. I had reached out to them a few weeks ago to ask about their accessibility and which activities they would allow Malachi to participate in. For liability reasons many companies will not allow him to participate even with adult assistance. For example, the only thing that Malachi can do at Dollywood is sit on the big train. He is not permitted on any rides. We have to be very cautious when planning activities because of his awareness- if he hears that he is not able to do something he cries so we try to avoid that from ever being something he overhears. 

Adventure #1- We loaded a tiny train and took a short ride up to a barn to meet Abu the monkey and several large birds. I had convinced myself that Malachi would be ecstatic and he gave me more of a “too cool for school” teenager vibe instead. Levi liked watching the monkey but didn’t want the physical interaction as Abu hopped from person to person. Jake and I thoroughly enjoyed it though!

Adventure #2- we took the boys mudding on a UTV through the woods. This was a result of some sheer determination as we struggled to find a safe setup for Malachi. We finally managed to get a car seat and tray positioned for him, but he was screaming in frustration. I was cringing at the idea of heading out for the hour long ride with him so angry, but as we started the drive his anger was replaced with joy. Levi enjoyed it too, continually telling me “Daddy drives crazy”. This activity was most definitely a win. 

I took a quick video for you so you could hear the giggles:

The next day we tried Adventure #3- a visit to the aquarium in Gatlinburg. It was so jam packed with people that we decided after 15 minutes to turn around and leave. Navigating the crowds with a wheelchair was just too much and our stress levels were spiking for all four of us. We made sure to see the sharks though!

Before we left Malachi and I got to sneak away on an outing to meet a penguin. Our penguin’s name was Moana, which Malachi loved. He got to pet the penguin three times, signing “more” each time he was finished so I know he enjoyed it even if his face didn’t show it haha. I think the fact that he got to do something that Levi wasn’t allowed to do (he wasn’t old enough) was the most exciting part! 

At the end of the vacation I found myself feeling…deflated. It didn’t have the WOW factor I had really hoped it would have for the boys. In addition to that, I started to process what our family vacations will look like in the future. With Levi still being so young we can get away with going to a place like Pigeon Forge and only doing Malachi friendly activities. But as I looked out the window when we drove the main strip of Pigeon Forge my eyes were drawn to all of the shiny rides and activities that I know Levi will be begging for us to do when he gets older…the go carts, the alpine slides, the zip lines. Those are all activities that Malachi won’t be able to do. I started imagining the conversations that we will have to have in the future and realizing that we are going to have to navigate some complicated things in the near future. 

We also dealt with some trauma moments from Levi that I didn’t see coming. On our big adventure day he had to wear paper bracelets for the activities we had purchased. As I lifted him up for the lady at the ticket counter to put on his bracelets he started crying. I didn’t understand why he was so upset after he had just been so excited and when I asked him what was wrong he cried “No surgery mama, no surgery”. He has attached bracelets to surgery, pain, and hospital stays. I tried to explain it to him but he just didn’t believe me. 

For the next several hours that we were there he continued to ask “No surgery mama?” Over and over again for reassurance. Apparently this made his radar go up and the next day when we pulled into a parking garage at the aquarium the tears started again and he screamed “no doctor mommy, no doctor”. I guess he has attached parking garages to medical things. 

These are the moments that break my heart. They remind me that our lives are full of physical scars and mental ones, and not having a way to heal those makes me so sad. Also realizing that there will be more scars in the future is so defeating. There is no winning this battle, there is only fighting with strength and bravery each time we go back into the battle. 

The rest of this week has been full of fun as some of my family from Ohio came down for an extended visit. We have been staying up late playing cards and visiting, and the boys have been able to play with their cousins. It has been such a joy catching up with them! I have taken an insane amount of great photos, so here is a sampling.

Cousins! And just for a point of comparison, the cousin in the back row with the navy blue and red shirt was born 5 days after Malachi.

This week I was walking in our yard and spotted a pile of brush that we have been meaning to clear for over a year now. It is one of those tasks that continues to get moved to the bottom of the list but is such an eye sore each time I spot it. But this week as I looked closely at it I noticed something new; inside that pile of chaos and ugly there were some beautiful flowers sprouting.

I sat and stared at that brush pile for quite awhile as I felt the Holy Spirit asking me to be still and allow God’s voice to be heard. And the longer I stared at the pile the more I started to see how well it represented my family and the testimony that God has been creating for us.

Our family is the ground that is hidden under that brush pile, covered in the death of our dreams, our expectations, and our comfort. As each new wave of trials has been stacked on top of us the darkness gets thicker and thicker. Yet through the tiny gaps the light is able to pierce that darkness and touch the soil. New growth is happening and God is literally bringing beauty from the ashes (Isaiah 61:3).

The Spirit laid this scripture on my heart and as I read it in the context of the brush pile I couldn’t help but feel God speaking to my heart. Maybe it will speak to you as well.

For God, who said, “Light shall shine out of darkness,” is the One who has shone in our hearts to give the Light of the knowledge of the glory of God in the face of Christ.

But we have this treasure in earthen containers, so that the extraordinary greatness of the power will be of God and not from ourselves; we are afflicted in every way, but not crushed; perplexed, but not despairing; persecuted, but not abandoned; struck down, but not destroyed; 10 always carrying around in the body the dying of Jesus, so that the life of Jesus may also be revealed in our body. 11 For we who live are constantly being handed over to death because of Jesus, so that the life of Jesus may also be revealed in our mortal flesh. 12 So death works in us, but life in you.

16 Therefore we do not lose heart, but though our outer person is decaying, yet our inner person is being renewed day by day. 17 For our momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, 18 while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal.

2 Corinthians 4:6-12, 16-18

Verse 16 is the one I really needed to be reminded of this week, so it bears typing it again:

16 Therefore we do not lose heart, but though our outer person is decaying, yet our inner person is being renewed day by day.

Often times I forget that God is a renewing God. We all will go through brush pile times…times where the weight of the burdens you are under feels like it is almost too much to bear. But it is in those moments that we have to remember that God is renewing our spirit each and every day. He is still very active and very hard at work, allowing new life to spring forth even under the weight of burdens. And allowing beautiful things to grow out from under the brokenness that we carry. He will also provide the gaps in our hardest moments to allow us to let His light shine through.

And when you step back and really take a look you will notice that simple things like flowers will look even more magnificent when they are placed with a backdrop of affliction.

Afflicted but not crushed.

Perplexed but not despairing.

Persecuted but not abandoned.

Struck down but not destroyed.

I don’t think you can find a more uplifting verse than this one to kick off a new challenging week. Please keep us in your prayers as we tackle lots of medical appointments this week for both boys.

Much love,

Leah

Discipleship

If I am being perfectly honest, I have a very hard time being still. I am a projects person and have always packed my days from start to finish with productivity- well, I guess I should be more honest and say “busyness” as it isn’t always productive. Even when I am resting my mind is actively detailing each upcoming project. I worked three jobs in college, 7 days a week, and took on 18-21 credit hours each semester to graduate with the lowest debt possible. I crave busy- almost to the level that it becomes an idol so it is something I have to cautiously watch.

I recently made the decision to step away from my job as church secretary and it has left an odd void in my brain. When Covid hit in 2020 our church closed the office and I worked from home, going up to the actual office when needed to complete the tasks I couldn’t accomplish at home. Slow days at home used to become church office catchup days. Now slow days at home are just that…slow days at home.

The temptation to pack those days is ever present but I have been trying to consciously fight those urges and find contentment in being a stay at home mom. I have been trying to establish routines and am reminded each time that the task isn’t an easy one with medically complex children. Sleep routines are still wonky; some nights this week Malachi slept a total of 2.5 hours, and other nights he slept 6 hours. Each day is a new one with no preconceived notions from the last.

We spent most of this week at the house playing games, catching up on medical phone calls, and being intentional with our time. The boys did some painting which they both thoroughly enjoyed.

Side note- pee pads work as wonderful table covers when painting! Excess medical supplies for the win!

The boys also got to spend some time in the therapy pool. The temperatures are cooling down and it is prime time for them to spend evenings in the pool.

We titrated Malachi’s CBD oil up for a final time early this week and it always takes some time for him to adjust to the new dose. We have officially maxed out the medication level for him post-liver failure. They are worried about going any higher than 0.7mls, but he was formerly at a dose of 1.5mls. The good news is that the tiny increase we were able to do this week (0.2mls) did seem to help us gain a bit more seizure control. He was having 6-8 pretty nasty seizures a day. Some of them were lasting longer than 4 minutes. But as of today he is only having 2-4 and they are much more mild.

His personality is starting to return as well and you can tell that he is generally just feeling better on the new dose.

Levi is changing by the minute it seems. His vocabulary is continuing to grow and the things that he says are legitimately funny. We have been working hard on manners and how to handle big emotions- I have never met a more empathetic kid in my life. He cries during most Daniel Tiger episodes. He has such a tender heart.

This week I was playing a song while doing chores and I noticed Levi intently listening. He joined in and much to my surprise he knew most of the words! I filmed a little chunk for you:

This week Jake is on fall break and we have some exciting adventures planned as a family. We have had so many tough weeks lately and Jake and I agreed that we need to create some fun for them. I am confident we will have some great stories to share with you next week as we have been scheming since Covid week.

I have been thinking a whole lot about discipleship lately. I recognize that the term may be a foreign to you so I shopped for a definition that I liked: “teaching biblical precepts, while modeling and guiding others toward living righteously as followers of Jesus Christ”.

I have been specifically burdened (in a good way) by what I want discipleship to look like with my own children. As youth leaders we see dozens and dozens of children each year, and it doesn’t take long to spot the ones that are being discipled at home. Too often families believe that the burden to disciple is on the church. But the time I spent with my children far outweighs the 2 hours they sit in church each week.

It is an honor to me to be able to introduce these boys to Jesus. To help God’s word come alive to them and help them understand what a relationship with God looks like.

But how in the world do you disciple a 3 year old and a medically complex 8 year old?? That question has been swirling in my brain as I try to find out what God wants me to focus on with each of them.

I was THRILLED to find some amazing books to help and I thought I would share them with you all in case you are hunting for something similar. They came in this week and they have already served as great stepping stones to intentional talks about God.

Here is a link to the books in case you want a set for yourself or someone else: https://www.amazon.com/stores/page/89EAC3F9-C534-4BBE-9EF1-485CE9DCA20E

While these books have been helpful at the teaching aspect of discipleship, the modeling and guiding parts are proving to be the most challenging. These boys see me at my worst. They see me when my temper is short. They hear me gossip. They get front row seats to my sinful and human side. But these ugly moments are such great teaching moments for them to learn from as well. Moments when I can point to the grace others have shown me. Moments when my tank is empty and I have to call out to Jesus for strength.

I guess the word for the night is ”intentional”. I am working at being more intentional in discipling both boys.

Billy Graham said ”Our faith becomes stronger as we express it; a growing faith is a sharing faith.”

I am not really sure why I typed this as it doesn’t sound like a devotional. But my hope is that by sharing my inner dialogue that maybe I can help encourage you in whatever discipleship or Kingdom work you may be called to. Who in your life needs to meet your Jesus? Who needs to see your ugly, weak side to help them truly understand the grace and power of God?

How many opportunities do we miss when we allow ourselves to believe we aren’t equipped or qualified to share the gospel with others?

I will be praying specifically this week for opportunities for each of you to get to share a piece of your faith with someone else. And I will pray that God gives you eyes to spot those opportunities and courage to start those conversations.

2 Timothy 1:7 “For God has not given us a spirit of timidity, but of power and love and discipline.

And please continue to pray for our family. And selfishly I ask that you pray for me as I shift my focus from fruitless projects to the Kingdom work in my own family.

Sincerely,

Leah

Stewardship of Suffering

Fall is here! This is my favorite time of year here in Tennessee as the weather is very Carroll boy friendly. The cooler temperature and low light are easy on Malachi and we love to spend time outside on the playground and time in the therapy pool.

We also broke out some of the clothing in storage to see what we have for Levi’s fall wardrobe. Even tasks as simple as these can trigger some emotions that I never see coming. Early on in our journey with Malachi I ignored common sense often and bought clothing for him that just wasn’t practical…we have to be very cautious with the clothing we put on him and many can accidentally come up over his mouth creating a suffocation risk. I would bring the items home and put them on Malachi only to realize that my superficial mommy desires were trumping what was in Malachi’s best interest and into the storage bin they went. Opening those bins is a flashback of sorts and brings back those moments of not getting to be a ”typical” mom. Being able to put them on Levi is surreal and heals my heart a bit.

Speaking of clothing, Malachi went back to school this week! I let him pick out his outfit as often as possible and he was extra picky, nixing four shirts before settling for his green alligator shirt and a superhero bib. He was incredibly opinionated, signing ”NO” as clear as possible.

School looks very different for Malachi and it is written into his IEP that the school system will honor whatever schedule we as his parents deem is best for him. Obviously with his health surprises over the last two months he has not been in a stable enough place to consider going at all. He still does not have any seizure control right now but we are continuing to titrate his old seizure medication up in hopes of getting a grip on those. On Tuesday I will increase to our new maximum dose for his CBD oil (Epidiolex), but even that dose is less than half of what he was taking pre-liver failure. His epileptologist is just not comfortable taking him back to that dose anytime in the near future.

With so many seizures each day and each of them lasting for several minutes we have been hesitant to take him back to school. We have started off slow, taking him just one day last week and trying to increase to two days this week. He ended up staying for 2.5 hours and that was enough to wipe him out for the rest of the afternoon. He was really excited about going back and seeing his friends and his teacher!

Malachi is in the Comprehensive Development Classroom (CDC) which has varying disabilities that span all elementary grades. There is a main teacher, several parapros in the classroom to help with the students, and a nurse assigned specifically to that classroom. I feel comfortable with the staff in the classroom and I know how much Malachi enjoys being independent and away from mom. They sent me this sweet photo while he was there.

This week has been difficult as we have been navigating potty training with Levi which has been brewing some major emotions and jealousy from Malachi. I have been very cautious about the words I choose to inspire Levi to pee on the potty, avoiding phrases like ”big boy” and negative references to being a baby because of diapers.

Whenever we talk about the topic Malachi starts signing ”No” and gets agitated. We have been trying to make it fun for him too, giving Malachi a mini M&M for each time Levi successfully pees on the potty and gets his M&Ms but it doesn’t seem to be curbing the jealousy much.

Levi has also been asking very specific questions about Malachi being potty trained and asking when he will walk. We have been trying our best to explain that Malachi might just get to take his first independent steps on the streets of gold in heaven. That leads to even more questions from Levi and we have been doing the best we can to try to answer them in an age appropriate way. I took a sweet video this week to share with you all:

The Bible is going to so alive for Levi as he grows up. What a hidden blessing. And little brother was awfully excited to pick up Malachi from school.

One night this week Levi fell asleep on the couch doing ”Me devotions”. Sweet boy.

I have been trying really really really hard to keep a positive outlook this week and while the struggle is still very real, I seem to be in a better place. The continual sleep deprivation continues to be my biggest hurdle. Jake gets a fall break a week from Monday and we are looking forward to having him home for a bit.

We have been able to get a few pieces back to our schedule this week that existed in our lives pre-hospitalization. Having those pieces back just feels right. High school girl’s soccer, youth group, men’s Bible study, family Bible study…we challenged our energy levels a bit trying to catch up on all of the life pieces we had to lay down or not give 100% to over the last few weeks. It is exhausting but oh so wonderful.

When I have the responsibility of teaching the youth I tend to be plugged into the word way more often to plan our discussions and lessons. It feels like I am drinking a cold glass of water on a hot day! It is so soothing to my soul to open up a physical Bible again and look for the things God wants to teach me through His word.

This week we tackled the misconception: ”Since evil and suffering exists, a loving God cannot exist.”

I could type for hours attempting to answer this question but that is not the route I feel I need to go. But I do want to touch on suffering.

Obviously the concept of suffering is a theme in our lives, but a relationship with God changes the disdain we have for suffering. Now don’t misunderstand me- suffering isn’t pleasant and watching my children suffer is more difficult than words can describe. But I also recognize the many ways that repeated moment of suffering have rooted my faith in God.

Ecclesiastes 7:4 “The heart of the wise is in the house of mourning, but the heart of fools is in the house of pleasure.”

The amount of godly wisdom we can gain in our sufferings is staggering- but we have to be willing to have eyes that search for those glimmers of faith building moments. God increases our wisdom each time we go through these trials, strengthening our faith to be ready for future attacks from the devil.

I explained to the teens that we are called to be good steward of our suffering. Those moments of sadness, mourning, and discomfort have the ability to brew a magnificent testimony that words without experience can’t create. Suffering creates a natural gospel story in our lives to tell others.

Too often we let our self-centeredness take over and convince ourselves that our suffering only affects us, when in fact our suffering can become a wide net reaching others and allowing them to spiritually grow alongside of us (sometimes during but most often after).

Have you been a good steward of your suffering? Have you allowed that part of your story to become a part of the testimony you share with others? Our spiritually refining moments can have a profound impact on the people we allow to peek into the windows of our lives.

John McArthur says ”True wisdom is developed in the crucible of life’s trials.”

I think back to all of the wisdom I have gained about the character of God by watching very hard things manifest in my life.

Sometimes the pruning God intends for us is painful, but in the end the purpose is to produce more and more fruit in our lives.

Much love,

Leah