Identity

This week I have been thinking long and hard about the blog and how it has changed over the last 8 years. When I go back and read the entries from Malachi’s birth I see such transparency and openness. But when I read current ones I can see and hear my hesitations in what I write. That change happened without me intentionally doing it, and it has got me really thinking about the purpose of the blog.

My number one purpose in the blog has always been to point people toward Jesus. I am not confident that each entry has done that, but that is always on the forefront of my brain when I sit down to write each week.

Another purpose is showing you the joy that special needs families have. When you choose contentment, even the hardest moments can breed joy.

Another purpose is awareness. I want to help educate the world on how to treat children with special needs. I also want to share as many medical terms and diagnoses as possible on the chance that other parents are just starting their medical journeys and need some support!

Another purpose I started focusing on several years into our journey with Malachi is always being honest, even about the hard things. This is the one that I seem to be having the most trouble with. When I post hard moments and hard emotions I have found that people treat me differently. I get eyes of pity and lots of “How are you doing today? I know it has been a hard week.” And while those comments come from a kind place they do more damage than good for my heart. I spend more energy than I should keeping my emotions in check and avoiding breakdowns throughout the hard days, and the looks of pity inch me closer to the floodgates and pity parties.

It has simply become easier to smile and nod. When people ask “How are the boys?” It is much easier to say “They’re doing great” then to spend time telling them about the 4 minute seizure Malachi just had or the g-tube scare with Levi. And I have come to recognize that most people want the response to be “They’re doing great” as it makes them less uncomfortable than the alternative.

And finally, I have been more reserved writing lately for fear of judgment. Covid and its social complexities seems to have empowered many people to want to educate others, myself included. One of the most hurtful things is when people question my parenting decisions or choices with the boys, so it has been easier to keep the details of our life quiet to avoid judgment. After a few personal messages from readers I clamped down on our privacy a bit.

But in doing so I have strayed far from what this blog was meant to be.

All of that to say, I am going to work hard to write without reservation, still allowing myself to be guided by God. There may be weeks that I post the ugly side of our special needs world, and I am asking that you allow me to do so and respect this special bubble that I put those thoughts in.

Oh boy, what a long intro that turned out to be!

Jake was off this week for his spring break and we had the most pleasant week together. The boys were so happy to have him home, and I needed the respite more than I realized. We are able to get into a groove with caretaking when he is home and each get the chance to catch up on much needed sleep. Even the small things, like Jake taking a medication session with the boys is a special treat. The monotony of our schedule can mentally get to me some times. And with the time change added in, getting the boys into a feasible routine for meds has been difficult.

We spent pretty much every day outside in the sunshine. This time of year is our prime time for Malachi to be outside since the temperatures are still tolerable. When summer temps hit he shuts down outside.

We do have a special announcement we have been keeping under wraps for a few weeks, although we have hinted at it several times. In May we will be bringing home two black Labrador puppies, Tuck and Shiloh. In true God fashion we were given a very special opportunity to get these two special dogs for Malachi and Levi. They are 11 weeks old now, and are being fully trained before they join our home.

We visit them often and get educated on how to command and we have been absolutely astounded by how well trained they already are with basic things like potty training, gentle, and simple commands. They will not be “mobility assistance trained” but we intend to continue to pursue that route once they get a bit older. The trainer is working with them now on basic things but will also be implementing some special skills in there. Our end goal would be that they could re-position Malachi’s head specifically when he has a seizure and cuts off his air supply with his head turn. This has been happening a lot more recently so we are always on alert and keep him in our sight 24/7.

Malachi chose the names for the dogs using his yes/no signs and worked it down from a list of 9 to Tuck and Shiloh. He was VERY firm on the name Shiloh and oddly enough that is the one that seems to have attached himself to Malachi; he is the one closest to the camera. He is a big, lazy puppy that loves to snuggle…perfect for Malachi. Tuck is a bit more adventurous but very well mannered and intelligent.

Here is a video that will let you see their patience training:

We are all very excited about the puppies and they are a daily topic of conversation. Jake and I each had black labs growing up and have been waiting for the right time to add dogs back into our mix.

We had a super special treat this week and got an invitation to an egg hunt with some amazing people. Throughout our medical journeys we have connected with hundreds of nurses, therapists, doctors, and various medical providers. With both of the boys having complexities we have become “frequent flyers” at our local children’s hospital and tend to be remembered (I think that is a good thing haha?) We have favorite anesthesiologists, x-ray techs, emergency rooms doctors, respiratory therapists, and nurses. We even used to have a favorite parking attendant and would bring her candy on the days we knew she was working.

During those long ICU stays the only company I had was medical staff, and I was able to form bonds with many of them. It was these special people that cared about keeping my son alive as much as I did, and I have always admired their hearts and dedication to such a challenging career full of ups and downs. They are also the only ones that truly understood the battles we were facing. Many of them have stayed connected after we were discharged and have become special friends to me.

One of those friends invited us over for an egg hunt this week with several NICU nurses and respiratory therapists. I giggled a bit at the irony of being such a regular that we get to party with them on their days off too haha, but in all honesty the day meant so much to Jake and I. These people saw/see us at our absolute worst and the love they have for my boys is something too unique to put into words.

One of my blog rules is that I try hard to respect the privacy of the people we spend time with, but I don’t think he would mind…

This is our favorite respiratory therapist, Ryan. He is almost always in the Emergency Room when we have had late night emergencies and Malachi knows his voice well. He always speaks to Malachi in a way that acknowledges his understanding, and that always goes a long way with Malachi (and mom too). I zoomed in on this photo because it touched my heart so much. You can see Malachi sneaking a glance at Ryan, who is not often in Malachi’s tiny range of vision and the smile on his face says it all.

Levi was way more interested in the babies than the egg hunt.

But Malachi was pumped about the giant chocolate bunny!

I get a lot of social anxiety when we take the boys somewhere. There are so many variables I can’t control and let’s be honest…my kids are quirky. Levi still can’t eat most things but loves to pop food into his mouth, chew it up, then spit it out. Sometimes he is polite and puts it in a napkin, sometimes he isn’t as discreet. He still chokes often on food and when that happens he projectile vomits. I keep a towel in the back of Malachi’s wheelchair when we are going to be inside a building but if we are outside I always am mentally choosing a spot to aim him like a super soaker should the need arise.

Malachi is very unpredictable in unknown environments. Sometimes the extra stimuli sparks his seizures, which we don’t like to draw attention to. But when he has seizures he looses his bowel control and will also pee extremely hard which the diaper can’t always keep up with. Changing him in public is also getting very difficult. Malachi is also cognitively very aware these days, and knows when he isn’t being included. He gets his feelings hurt often and starts crying…like BIG time, crocodile tears. It breaks out hearts when it happens. We have been trying to prepare him for things a bit more, explaining to him that there will be kids doing certain things that he won’t get to do and we can come up with some pretty lame excuses as to why he can’t do them. Like how he is the oldest kid there and ”they are only letting the little kids play over there“. Or we tell him how boring something is, and distract him with something fun we will get to do when we get home. But I worry about the day that those stories will no longer work.

Public outings require a lot of preparation physically and mentally for our crew. But they are also so important in so many ways! So we just have to find ways to make it work. Our egg hunt outing went great with zero seizures and vomits. Levi kept kissing the tops of the other kid’s heads but other than that we weren’t too weird.

I have been reading another blog that has been doing a series of posts called: Confessions of a Special Needs Mom

When I read them it feels like my heart is high-fiving the author. The struggles she talks about are so relatable to me.

I want to start having some of those conversations in these entries but do so with a disclaimer. These are intended to educate and bring awareness to a world that you may not fully understand. I am not writing these for sympathy or self-glorification.

Confession of a Special Needs Mom: I have lost my identity against my will.

I didn’t realize that this could ever actually happen. I always thought it was so crazy that someone could “lose” an idea of who they are.

When I was thrust into the special needs world at Malachi’s birth I still clung to pieces of my pre-mother identity. I had hobbies and goals. I enjoyed doing trivial and meaningless things, like watching Jeopardy and reading an occasional book. I thoroughly enjoyed working out, coaching soccer, and hiking up mountains. Going out with friends sounded like something fun to do, and shopping was an activity that took several hours mostly spent wandering around stores and looking at things for the sake of it.

When Levi was born I spent those first few months in ICU land and those tiny fragments I had clung to disappeared. I came home from Cincinnati and the things that I once loved now seem so time consuming, pointless, and so far down on the list of priorities that I have mentally let them go. While some may say that is sounds like depression, I truly don’t think that is what I am dealing with on this one. It is simply the inability to give of myself to anything or anyone other than my children.

A few weeks ago someone sent me a link to an Enneagram test and for fun I clicked through it one night.

Here are some of the questions:

“I think a lot about what will happen in the future”

”I am a natural caretaker”

“Average people often find me a bit weird”

“I often feel like an outsider”

“I am always up for a new adventure”

“I enjoy caring for others and their needs”

As I clicked through the questions I caught myself pausing, trying to decide if I needed to answer with my natural inclination or my reality. The answers that I would choose differ greatly now that I am a special needs mom.

There are not many things that come naturally to special needs mothers. Watching seizures, changing g-tubes, seeing daily suffering…these are not things that come naturally to me. But they are things I have to accept and learn to become “natural” at.

When you become a special needs mom you are required to trade pieces of your identity for pieces you would never voluntarily pick from a list. There are days that I resent that. The lack of choice and control I have over my own life is hard for me some days. I resent that when I do get a free hour all I want to do is sleep, trying to catch up from countless nights of insufficient rest. I resent that I can’t work out and look like I want to, can’t coach soccer like I used to, can’t wander around TJ Max aimlessly looking at cute clothes I might wear on my next girl’s night out. That is a life I an longer living.

But then I remember that I am not put on this earth to be the person I want to be. I am here to be the person God is calling me to be.

Ephesians 2:10 “For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.”

A huge part of walking with Christ is surrendering to His will for our lives, trusting that He knows us a whole lot more than we know ourselves. Read that verse again.

I am not completely convinced that clinging to my “identity” is God approved. It sounds a whole lot more like the world to my ears. The world convinces us that we deserve ______ and we earned ________. But that’s not how a life with God in charge looks.

Life with God is acknowledging that we have been chosen by God, our Creator, for very specific tasks for our time on earth.

Oh, how ashamed I am to see how my mind has selfishly turned these God given tasks into chores.

When our identity is rooted in Christ it cannot ever be lost, as it is not ours to lose.

I feel like typing all that out was therapeutic for me haha. Maybe tonight’s leading from God was for my heart and not yours. Or maybe He knew we all needed a reminder that we can’t pretend to be a silver spoon when the Creator designed us to be a salt shaker.

May we all be challenged this week to allow God to shape our identity instead of our own ideals.

Much love,

Leah

P.S. I had to laugh last week at the amount of typos and errors in the entry I posted, especially adding a j to my name. We have been having technical issues and I am typing them on Malachi’s iPad, clearly something I have not mastered. I thought about blaming Levi, but that just didn’t feel right.

Silencing the Lullaby

This weekend we got a little courageous and took a day trip to Pigeon Forge. We are still being cautious with the boys in public places, so we researched two shows that we felt were safe enough for our crew. Yes, we have all had Covid but we want to still be wise about limiting their exposure to other sickness with their immune systems being as protected as they have been this past year.

Our first stop was at the Pirate Voyage Theater. They require masks while anywhere on the premises other than your table, and there are no medical exemptions. Both of the boys have airway issues so we never frequent places that will require long term mask usage, but we started working a little each day on building their tolerance up for the two minutes it would take to get to our table.

Loooong rabbit trail here…

Being in isolation for the last year has also freed me from “skin toughening” moments that we encounter on a daily basis when we are out and about. While 80% of the people we encounter are kind and accepting, there is a small percentage of people that are not. When Malachi was younger and his differences started to become noticeable we were naive to this reality. When it happens now we are able to attribute it to ignorance and don’t feel the need to “educate” certain individuals like we used to. We read each moment and decide if it is worthy of my emotions and energy.

So when Covid hit we found ourselves in a safe Carroll bubble of love. As we planned this quick family trip I started with a phone call to the Pirate Voyage show. I asked about handicap seating and the young girl on the other line explained that they were sold out of every handicap seat for the entire weekend. The show has limited seating due to their Covid precautions, so I wasn’t shocked. I told her “that’s okay we will just carry him in and he can sit on my lap.” I told her we would need two adult seats and two children seats in the regular seating section. Even though the boys don’t eat and can’t sit in their own seats (one due to toddler-ness and one due to disability) we have always had to still buy them full price tickets….something we totally accept.

She said “hang on, let me talk to my manager”, and in my mind I had decided she was going to talk to him about having any wiggle room with the handicap section. Yes, presumptuous but I was hopeful! She came back on the line and said “I’m sorry ma’am but I cannot sell you tickets. My manager says that you having your handicap son on your lap will be a fire hazard.” It was said in such a matter of fact way and it genuinely caught me off guard. I felt my face flush with embarrassment, which I can’t really explain, and I felt my voice starting to do that shaky thing when emotion hits.

I thought that maybe she didn’t fully understand exactly what we were planning to do- leave the wheelchair in the car, carry Malachi in on our shoulders (he is 36 pounds so not crazy heavy for Jake), and sit him on our laps which we would have done anyway to help narrate the show. I re-explained and she said “I understand all of that but I cannot sell you tickets. He will be a fire hazard.” I kept repeating this line in my head and the more I said it the more upset I felt myself becoming. I asked her if they don’t allow scared four year olds to sit on their parents laps and she said “that is different”.

The longer we spoke the more belligerent she grew, and I found myself giving emotion to something that clearly wasn’t going to change. I asked to speak to the manager directly and she gave me a different number to call. By this time I was pretty upset, but while I was on hold with the lady initially (after I had verified they had open seats) I whispered to Malachi who was eavesdropping on my conversation and let him on the big surprise. He was giggling and super excited. As I got off the line I considered letting it drop but his sweet joy caused me to dial the phone again.

Thankfully a different woman answered, and this time around I simply told her we needed 2 adult seats and 2 children’s seats. No details until she asked, and no emotion. I also didn’t mention my previous phone call with the other woman. She was super sweet and said they had plenty of open seating and asked if we had a preference. I told her “ideally the handicap section but I have been told you are all sold out of those seats?” She asked about Malachi and I explained that he was in a wheelchair and had very limited vision but we would be content wherever they could safely place us. She said “hang on a minute, let me talk to my manager” and I cringed from dejavu, bracing for another rejection.

She came back on the line and said she spoke with her manager and they had reorganized things to give us the center section in the front row of the handicap section. It was literally the best seat they had to offer. I literally started crying, which I was embarrassed about (seriously, who cries about tickets for a pirate show haha). It wasn’t really even about the prime seating, it was about the willingness of someone else to walk a moment in my shoes and try to make life a bit easier. My son went from being a “fire hazard” to being a very special 8 year old boy who would get to be right up front for the action.

As I got off the phone and wiped my eyes I shook my head at the drama and had to laugh a bit. Then I told Malachi the news that not only would he get to go to the pirate show, but he would be close enough to touch them!

I often hesitate to post things like this as I never want to give off the impression that we have a sense of entitlement, or an unrealistic expectation of the world to be perfectly accommodating. But like all mothers, I do have an expectation that kindness be extended to my children, regardless of their abilities. To hear Malachi referred to multiple times as a fire hazard simply because of his special needs hurt my heart and I was so incredibly grateful that those words were reaching my ears and not his.

But I do post this with the hopes that it will remind you to saturate special needs families with kindness when you are out in public. We are often bracing for the bad moments, as they are not unfamiliar or rare. When the uplifting moments happen it brings me to tears and breathes life back into me. We remember both moments, and need desperately for the good interactions to outnumber the bad ones.

We arrived and sat in the parking lot until all of the crowd had gone in and sat down. Then we masked up and walked straight to our table and got settled with about 30 seconds to spare. I figured we would be close, but we were literally RIGHT in the front, and Levi was cautiously looking around and soaking things in when BOOM the show began. Pirates were firing guns at each other and sword fighting and I am pretty sure a cannon went off. Malachi started laughing hysterically and Levi lost his ever loving mind. Jake and I couldn’t help but laugh at how quickly (and loud) things kicked off. We finally got Levi calmed down, but literally every time we got him to stop crying something else would scare him and it would start all over again. He watched the show with a horrified look on his face, but couldn’t look away for fear of being surprised again.

Malachi was the happiest I have seen him in a long time. His imagination kicked into gear and for that 1.5 hours he was a pirate with them. He shouted when they shouted, laughed when they laughed, and got super intense in every fighting scene. He is legally blind, so I narrated the show to him quietly in his ear and he was so engaged clinging to every word. But the actors would often be right in front of his line of vision and with the low lighting he was actually seeing them! I know because each time he caught a glimpse he would grin from ear to ear.

At one point there was a big fire explosion and you would have thought it was the greatest thing he had ever witnessed. Levi disagreed. At another point in the show some pirates jumped into the water so close it splashed us, which made Malachi erupt in giggles and Levi shriek in fear.

We would absolutely do that show again for Malachi, as he loved it even more than we ever imagined. We snuck out of the show 10 minutes before it ended to keep them from being mixed in with big crowds. Then we headed over to the second wave of our adventure…the Lumberjack Feud.

I had researched several shows that we haven’t already gone to in Pigeon Forge and this one caught my eye. They do 13 lumberjack competitions, like chopping logs, sawing logs, and other noisy events so I figured Malachi might enjoy the auditory nature of the show.

Levi no longer had an ounce of trust in my show selections…

I would love to give you details about the show, but the second those chainsaws fired up Levi ran like the devil was chasing him and he and I ended up playing in the wood chips behind the theater.

But I was able to enjoy about 15 minutes with Malachi, and it was so special. Just like the pirate show he was hanging on to each new noise and competition. He was cheering with the rest of the crowd and so into the show! I took a video to share with you:

In fact, much to our surprise right when I stopped filming this video above them awarded him with a Lumberjack cookie, a slab of wood that was signed but he lumberjacks, for being one of the “rowdiest fans” haha. He was so proud and still is.

He loved the loud chainsaws and noises, and especially loved the trash talking between the two teams on the stage.

And Levi finally gave me some smiles after playing in the wood chips for an hour…far, far away from the chainsaws.

After the show we loaded up and headed home. We talked in the car about their favorite parts of the day and Malachi signed that he liked the Pirate show the best and he liked the sword fighting and fire. Levi also voted for the Pirate show (not a shocker) and said he liked the puppies the best. The show uses dogs in one portion of it and they jump in the water and swim. Both of the boys thought that was pretty amazing.

I will tell you though- we were all exhausted!

Other quick updates from the week…

Momma got her first Covid shot! I was extra sleepy and my arm was sore but other than that no negative reactions.

Levi has been a dancing machine this week and it never ceases to make me smile. I filmed him for you, and it will be worth the click for sure:

And Malachi’s front teeth are insanely close to popping through the gums. This has led to a very emotionally charged week for him, and lots of crying spells but we are hoping that this is the week.

Jake is on spring break this week and we are looking forward to a very calm week.

If I sat here and dumped out all of the thoughts I have been wrestling with this week we would be here awhile. There are so many things that God has been pressing on my heart lately, and each of them can captivate my brain for hours.

Jake and I were talking on our road trip about a sermon he had listened to. He said that they were interviewing a pastor in a different country whose identity had to be hidden for fear of repercussions on his life. He said that the interviewer asked the man about what he thought about the American church, and his response was “Satan is singing a lullaby the the American churches.”

The more I thought about this the more I see truth in it. When I look at the Christian walk of the people in the Bible and the Christian walk in America today I have a very hard time spotting the similarities.

This thought has created some self reflection in my life, and might be an interesting thing to process this week in your life as well.

In what ways is my life a threat to the devil?

Do I make him nervous?

In what ways has his lullaby dulled my mind and sensitivity to the Spirit?

It is so incredibly easy to water down Christianity to a title and a check mark. But it is a life of action, a life of your faith causing other seeds to be planted and grow. If your Christianity is not influencing anyone other than yourself then you are likely not on the devil’s radar.

When I look at the men and women of faith in the scriptures I see an excitement. And I believe that we all have that level at some point in our faith walk. But we allow the devil to sing lullabies to us until we forget that inexplicable joy Christ bought into our life.

This week I met with a group of about 50 women for a meeting about an upcoming youth event. As the hours ticked by closer to the meeting I found myself growing anxious about the meeting, which sounds so silly. Give me a room full of 300 teenagers and I can have them laughing within minutes, not an ounce of nerves brewing inside me. But give me a room of 10 adult women and I just feel so…inadequate in all facets. I only knew two other people at the event and for some reason I have grown even more socially awkward than pre-Covid. It was being held at my church so I made myself busy in my office until the meeting began, then slipped into my seat.

I had been asked earlier in the day to pray aloud over someone specific during the meeting My inner dialogue was cracking me up as I looked around the room. I caught my mind saying things like “Am I qualified enough to pray aloud?” Or “Should I write down some notes in case I get stumped in my prayer?” And “What if I don’t get asked to pray first and my prayer is super lame compared to everyone else’s?” A lame prayer? For real, Leah (insert eye roll).

Each time a new ridiculous doubt formed in my brain I quickly pushed it away as I recognized that the devil was using one his biggest tactics on me- the feeling of inadequacy. He plants these seeds of doubt in our hearts to keep us from acting in faith.

The meeting started and the Holy Spirit joined right in. I found myself in a room with 50 other women, all praising the same God in the same Spirit, and in the same unbridled way. The Lord used His Spirit to squash my unfounded inadequacies underfoot as we prayed together and worshipped together.

As I felt tears rolling down my face I looked around the room and I thought to myself “THIS is what the early church must have been like.” A group of people brought together with one thing in common- an unmatched love for God. And then I transitioned into the thought “THIS is what heaven must be like.”

But in Heaven I will get to hear the clear voice of my son worshipping the Creator alongside me.

The point of all this is to remind you that Christianity isn’t meant to be done alone. If your faith only impacts you then you are missing the point of the transforming power of the Gospel (which literally means “good news”). While the devil may not revel in the idea that YOU don’t belong to him, there is no threat in you.

I don’t know what you need to do to silence the lullaby in your ears. It may take signing up to serve somewhere in your church. It may mean you actually start going to church somewhere or a Bible study. It may be a challenge to start making intentional faith filled social media posts. It might mean seeking out that one friend that god has been laying on your heart and inviting them to talk about God with you this week. May our faith lead us to action this week.

Silencing the lullaby will look different to each of us, but may we be sensitive this week to recognizing the singing voice of the devil in our lives.

Much love,

Leah

Necessary

This week I asked Levi “Who is the strongest person you know?”

He thought long and hard about my question and finally replied “Umm Malachi!”

And oh how right he is. Malachi is so resilient and so content, even through some really hard diagnoses and trials. I am continually proud of the boy he has become. And knowing that Levi sees something so big and strong in his brother makes me so happy.

Now that we are doing in home therapies and tutoring with Malachi we have seen the need for Malachi to have a space of his own for these sessions. Levi tends to wander in and out and make the appointments all about him, which isn’t fair to big brother Malachi. For my birthday this year we had a barn door put on the opening of the therapy room and Levi’s rule is he can’t go past it during sessions. He still stands at the corner to peek at brother though and cheer him on.

I often get questions about how we know what Malachi wants or needs. One of the biggest blessings God has given us is found in Malachi’s ability to communicate to us without saying a word. He is very opinionated, but you have to take time to listen. More on that in a minute.

This week we headed to Chattanooga for Levi’s annual pulmonology appointment. He is seen by pulmonology in Cincinnati primarily, but followed by another one here locally in case something goes wrong and we end up in the hospital with him.

The pulmonologist was shocked at how much Levi has changed in a year. He is still wheezing a bit when he plays hard, and he is still stridoring when he is crying which tells us that the vocal cords are still paralyzed. But overall he is doing so great from an airway standpoint.

We will head back to Cincinnati this summer for his annual appointments and surgery there but everything seems to be staying routine for the moment.

We also started scheduling our other summer medical trips this week to Nashville. I usually am able to plan it just right that we can see all of Malachi’s orthopedic and spine surgeons on the same day, but now that isn’t an option so it looks like we will have a mini-getaway in between two appointments. I try to spread out the traveling summer appointments for sanity sake so we will aim to do Nashville in July and Cincinnati in June.

Levi has been really struggling with medical PTSD and the recent covid test he had to have made matters worse. In an effort to keep his crying to a minimum I bribed him with a trip to the zoo afterwards, which helped a bit. The boys were so excited when we pulled in, but once again the jaguars were sleeping on their platform instead of walking down by the glass. This is the second trip in a row they have not come down to Malachi’s line of vision and he was devastated. I tried to distract him by quickly going to another great animal but the tears started to flow and we ended up sitting on a bench and trying to get past the wave of sadness.

As we went through the rest of the zoo Malachi was simply mad. He was annoyed at the jaguars and decided he was going to stay in a bad mood so after a bit we loaded up and headed home. That afternoon Malachi stayed in his mood, yelling and being extra grumpy. This went on for hours, which was a first for him as usually he bounces out of bad moods quickly. When the attitude was still very alive and present by that evening I had a stern talk with him and told him if the zoo had the potential to ruin his day that we weren’t going to go anymore. His face immediately softened as he listened to my words, and when I picked him up to carry him to the car he squeezed me tighter than he had ever hugged me before. And then he was back to his normal bubbly self.

That whole encounter was so special to me, as it was the first time he had attempted an apology. I obviously made a big deal over the scenario, making sure to tell him how proud I was that he was choosing to not let a bad moment ruin his day anymore.

Levi has been into some major mischief this week. He knows when I am medicating Malachi that my hands are full and he can pull off some quick maneuvers.

The boys did get to have some more playground dates with friends this week as the weather was exceptionally beautiful.

We also spent some time this week on some very special play dates with some four legged friends!

Malachi was as tickled as could be!

Let me down quick Covid rundown before I jump into the next paragraph. Around the small town we live in life has not stopped. Sports are running as usual, schools are in session (students are unmasked), and churches are having normal services and gatherings. I know for many of you that is not the case and you may balk at some of the things we do, but be assured our decision to do them is driven by the Holy Spirit.

On Sunday evenings we open our home to the youth group. Before Covid hit our home we were gathering in the driveway or in small groups in the basement (separate outside entrance) so the teens wouldn’t be in contact with our boys or their living areas. Now that the kids have sailed through Covid, by the grace of God, we have gone back to opening the whole house to the group. We cook a large dinner and do a Bible study with them after they eat. As much work as it is, we really enjoy hanging out with them each week and speaking life into their hearts.

But tonight we kicked off a new adventure by opening our home for a family Bible study night. We had 9 families attend and had the chance to fellowship then dig into the Word with our families. Interestingly enough, the thought of having adults in the house instead of just teens made me overthink everything. Teens are easy going as long as you feed them decent tasting food. And Jake holds a men’s Bible study in the basement on Saturday evenings but I know they aren’t seeing dirty baseboards or spotty windows.

But as much as I desired to clean the house top to bottom, my energy level was completely shot. This weekend we also had an overnight youth girls retreat where I ended up staying awake most of the night with 23 girls. I snuck away to put the kids to bed but they boys stayed wired and awake until after 3am. Then there is that evil time change! I have been running on tiny shreds of energy today and cleaning the house found it’s way at the bottom of my list.

As I looked around the house today and managed to eagle eye spot every crumb, every spot on the floor, every tiny dried cheese shred from Levi’s wanderings. I started to re-prioritize my list which would have taken away from my prep time for the lesson. But immediately the Spirit directed me towards the story of Mary and Martha to remind that the devil can even use simple things in our lives to steal focus away from Him.

Luke 10:38-42

38 Now as they were traveling along, He entered a village; and a woman named Martha welcomed Him into her home. 39 And she had a sister called Mary, who was also seated at the Lord’s feet, and was listening to His word. 40 But Martha was distracted with [a]all her preparations; and she came up to Him and said, “Lord, do You not care that my sister has left me to do the serving [b]by myself? Then tell her to help me.” 41 But the Lord answered and said to her, “Martha, Martha, you are worried and distracted by many things; 42 but only one thing is necessary; for Mary has chosen the good part, which shall not be taken away from her.”

But only one thing is necessary.

That sentence is so poignant to me.

This weekend at the retreat our speaker focused on “6 True Points About Your Life”. I was so thankful for such a pertinent topic to these young girls; in the same way that I was tempted today to focus on the wrong thing, our teens today are often re-directed to things that don’t truly matter. Yes, we stay “busy” and sometimes even stay busy doing church-y things. But how often are we taking time to sit at the feet of Jesus and make eye contact with Him?

In this world we are constantly pursuing things that are of little importance. Titles, accolades, awards, notoriety. But as Christ reminded Martha, these things are not necessary. But connection with the Father is. It is in that connection that we find something the world can never take away from our hearts.

So this week I am evaluating my “necessary”. Our mind is exceptionally good at labeling things as necessary. Ultimately if something is trumping my time with God then maybe it needs to slide over into the unnecessary column. And recognizing and changing those misplaced priorities in our lives is itself an honoring gift to our God.

I had 100% intended to write about something completely different this evening, but I guess that is meant for another day! This momma is running on empty and is headed to bed. Thank you for taking the time to check in on our family.

Much love,

Leah

Sweet Smiles

I am having some technical difficulties with our internet and it is already after midnight so I apologize in advance if this post seems choppy and short! I am going to try to type it out on my phone.

Let’s kick off this post with a praise report photo:

While it isn’t news that Levi no longer requires oxygen, this moment was huge for me as his momma. It has always brought me peace to know that tucked into the back closet there was a hospital grade oxygen concentrator and lots of spare tanks. I always worried that if the boys contracted Covid or have another major illness that they would require some supplemental oxygen and it might keep us from an ER/hospital trip. We have a portable concentrator we purchased with some grant money a year ago but it isn’t rated to do high liters of oxygen.

But in an effort to step out more in my faith, I called the oxygen company this week and arranged for them to pick up Levi’s equipment. I immediately started regretting the phone call after I hung up as I formulated the “what ifs” in my brain. But watching it get loaded onto the truck and seeing the empty oxygen closet in the bedroom lifted an invisible load off of me. It reminded me that we are witnessing miracles in Levi’s life and airway.

As you can see from the photo, Levi was very stressed by the whole ordeal. Maybe he sensed my hesitation. He didn’t understand why the man was taking them all off the porch and putting them into his truck.

Malachi has had a great week with his seizures. They have calmed back down and shortened back to their normal, but his sleep cycles are still very much messed up. It is rare for him to be asleep by 3am, and more often it is 5am before he completely surrenders.

This week he has been smiling in a new way that I have never seen before. I think it I had to describe it I would say it is a smile of contentment. It has been melting my heart. He has even been smiling in his sleep.

Transparency moment. Initially I was smitten with the new smiles (and still am). But then I started to wonder if this was some special gift from God right before something bad was going to happen. Yes, I am irrational. But the thought of how and when Malachi will leave this earth is something that always lingers in the back of my thoughts. I wake up at least three times each week with a deep ache in my gut thinking that Malachi is too quiet as I slowly turn to see if he is still breathing.

I recognize how unhealthy these thoughts are and I do my best to squash them when they rise up. It is in these moments that I realize that control has more certainly become an idol in my life. And the lack of control causes my heart so much unecessary distress.

But then I remember that Malachi lives a life full of miracles. And it is in the moments that I can’t control that I get beautiful glimpses of God.

Here is a photo of Malachi when he was 1 month old (28 weeks adjusted) and had just reached 2 pounds. God has preserved this mighty warrior for mighty reason.

Levi has been talking more and more and watching his vocabulary grow is so much fun. I get excited each time he says a new word, and even more excited when it is in the correct context. He has been singing praise and worship a lot with me this week and I took a quick video this afternoon to share with you:

He has also been getting into a lot of mischief and mascara.

Now that the boys have all had Covid we have been getting a little braver about taking them out to a few local places including church. They have been so overjoyed to see friends again and it has been a breath of fresh air for our family to worship together again. We still take precautions and distance as much as a three year old will allow.

The boys had some fun playground days this week with some local friends with a very special connection! The husband is a respiratory therapist at the hospital and works in the ER at the children’s hospital. He has helped us through many many emergency trips and Malachi always recognizes his voice. And his wife was one of Malachi’s NICU nurses when he was a baby. What a special friendship we have!

Malachi and their 4 year old son played like best buds and Levi was smitten with their baby. And she was so tolerant of Levi’s many wet kisses on the top of her head.

As I reflected back that evening on the day I couldn’t help but smile as I got a glimpse of the mysterious ways God connects us with others.

I have learned that there is a dark side and a light side to all situations we encounter. My mood often influences which one my eyes gravitate toward, but acknowledging the presence of good even in the darkest corners of life is what has carried me through some really hard moments.

This is an absolutely horrible analogy, but perfectly fitting so I will toss it at you. Yesterday I turned 35 years old, although sometimes I feel as though I am going on 80. I am very uncomfortable with birthdays as I don’t enjoy a lot of attention, but this year I decided to take a “Leah” day. Frankly I am running pretty ragged these days and wanted an excuse to recharge.

I had planned out the day in my mind, leaving room for naps and wonderfully hot showers in between some of our regular daily duties. Medical mamas don’t ever truly get a day off but a few bonus hours of having the opportunity to focus on non-medical things is rare and special. But of course the day didn’t go as planned; and I couldn’t help but laugh at how horribly it ended. We had a surprise big plumbing issue arise and I spent the second half of my “Leah day” mopping up sewage that had bubbled up in our walk in shower. And you are welcome for that lovely visual haha.

It was midnight and I was sanitizing the bathroom floor for the 4th time and feeling anything BUT recharged. I was focusing on the dark side of the moment, most definitely helped my the fumes the Pine Sol was sending into my nostrils.

And to be honest, looking for the light in that moment was hard for me to do. But I slowly but surely was able to start my list of blessings…that we had a friend with the right equipment to help solve the issue and a heart willing to help with a nasty job. That it happened on a weekend instead of a weekday when Jake would be at work and unable to tackle the fix right away. The fact that I was spending this birthday in my own (stinky) home instead of the hospital again.

Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus. 1 Thessalonians 5:16-18

The Bible talks about how important it is that we look different than the world, and that includes our inner thoughts. Looking different than the world starts with our changing our hearts. And one of the best ways I have found to work on changing my heart is found in this verse above. Rejoice always, pray continually, and give thanks in all circumstances.

Think about how much your life could change if you start to focus on these three things. And please know that I am speaking to myself here as well. It is a good challenge for me this week!

Thank you for taking the time to check in on our little family.

Much love,

Leah

Consider It All Joy

The Carroll clan is Covid free and so incredibly thankful to be on the other side of it. I ended up going for another Covid test and added on an antibody test to see if there was a chance I had already had it. It came back positive for IgG meaning I had it in the last three months and negative for the IgM meaning I have not had it in the last three weeks. I must have been an asymptomatic carrier at some point, which completely baffles us. But it does explain how I wasn’t getting it this time around!

Malachi’s seizures essentially paused while he had Covid. He had some of his mild ones each day but nothing significant. But this week they ramped back up worse than ever before. We have been up until 5am several nights this week trying to manage seizures. We keep a “rescue” medication on hand that we are to use if his seizures go longer than 5 minutes, but it slows his respiratory rate so we have to call 911 when we give it. In the second half of this week he had 3 seizures that lasted longer than 5 minutes but I still felt like he was safe enough to not administer the meds. He was having some major tummy aches which were causing the seizures so we made some formula changes to see if we could get it back under control. While he is doing better we haven’t found the perfect solution yet.

When we go through hard nights like these, especially several in a row, we throw all schedules out the window and just focus on daily survival mode. Obviously we are all mentally and emotionally exhausted. But now that Malachi is bigger my muscles take a beating as I try to physically hold him in a safe place through his larger seizures. He is insanely strong during seizures and keeping him from hurting himself or smothering himself is quite a challenge. I feel bad even talking about my physical discomfort knowing that Malachi’s has to be much worse! I can’t imagine what his body must feel like the next day.

But overall Malachi has had a wonderful week. He has been so happy, finding joy in everything around him.

We have been doing lots of family game nights and watching his competitive spirit come alive is so fun. Right now Mouse Trap is his favorite game. He always puts me in the mouse trap when he gets the chance, and steals cheese from Levi or dad. I took a video this week so you could see how well he communicates his wishes to us.

Levi’s energy level seems to increase by the minute. It is fascinating and horrifying all at the same time.

With Jake back at work we do a lot of car naps for Levi. It is only when he is strapped in and has nothing else to do that he will surrender and close his eyes for a much needed nap!

The weather here in east Tennessee was beautiful this week so we spent hours and hours outside. We spent so much time outside on Wednesday that we accidentally got sunburned!

Malachi’s freckles made their appearance for the season. It always makes me smile to see those freckles appear.

We invited friends over to play on the playground and swim in the pool and it was the happiest I have seen both of my boys in a very long time. At one point Malachi was laughing so hard that the neighbor came over to tell us she could hear him all the way on her back porch! I videoed him as he was laughing the deepest chuckle we have ever heard from him.

There are days when I feel like just a caregiver. There are days I feel like a nurse. And there are very rare days I just get to feel like a mom. This week I had lots of “just mom” moments and they were so refreshing to my heart.

Watching my boys play with other children… everyone feeling included and “seen” with effortless inclusion…it brought such a big smile to my face.

Seeing joy pour from the hearts and faces of my boys is something I never tire of. I am so thankful that God gifted Malachi with the ability to communicate his emotions so clearly to us. This life would be much more challenging without affirmations from him.

As I mentioned last week, Jake and I tackled lots of projects in the house while we waited impatiently for Covid to leave. We were able to gather enough materials around the house to bring one of my ideas to life that had been on my heart for a long time.

We spend lots of hours in our main living area. Many of those hours are mentally challenging and my emotions can wander all over the place. It is the room that sees the most variety in my emotions and takes the brunt of my anger. To combat the hard moments we have tried to saturate the room in scripture to help me refocus. There has been a space on the main wall that I stare at often, and I knew there was message I needed to place there with something challenging but couldn’t settle on what it might be.

This week we gave legs to the project and knocked it out with some of the pallet wood from the boys playground crate, some stencil paper, and some extra pant. The sign is absolutely giant at 9 feet long and serves its purpose of catching my eyes and distracting me from negativity.

James 1:2-4 “Consider it all joy, my brothers and sisters, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.

The devil grows stronger in pity parties, and the more you feed your disappointment with thoughts the more it has potential to separate you further from Christ. I have found this to be so incredibly true in my own life.

But when I take the time to look past the current struggle and see what it is producing in my life I start to see purpose in the pain. Trials can defeat you or trials can build endurance in your faith. You can choose to view yourself as a victim in your trials, or you can view yourself as an athlete training yourself for something even greater.

Consider it all joy. It is one of the most unnatural things you may ever ask your mind to do, but it can transform your perspective if you allow it. I know that it does exactly that for me on a daily basis. And I hope that one day it becomes more natural that I don’t find myself saying it two dozen times a day!

Thank you for so strongly lifting my family up in prayer over the last few weeks. We are so blessed to have an army of support to lean on. We truly love you all and recognize the part that prayers had in the healing of our boys.

Sincerely,

Leah