I am so relieved to share with you that surgery was successful. Malachi has had multiple abdominal surgeries since his birth and each one has left behind lots of scar tissue. The surgeon started snipping scar tissue that was in the way to get the the problem spot they noted on the CT scan and found a piece of scar tissue pinching down a chunk of intestine. Once they snipped it the gut started flowing immediately. No noticeable damage to the intestine that required cutting out and reattaching sections.
Surgeon is very pleased and said it was a good thing we didn’t wait any longer as it would have gotten much worse and most definitely never self resolved.
Malachi had a nerve block in the operating room so he isn’t feeling the pain quite yet and shouldn’t for 2-3 days. He is still hooked to a catheter for urine, multiple IVs, and a NG tube down his nose to allow air and stomach contents to stay out of the intestine while it heals. He is still getting some whiffs of oxygen to help keep his stats up.
He has a four inch incision down the center of his belly which will make handling him very difficult. Our goal right now is to leave him as still as he will allow us and let his gut rest. We are in a room on the regular floor and not the PICU which is a huge step in the right direction. The surgeon said to expect a 7 day stay but if Malachi starts bouncing back more quickly than that we will make it home sooner. He is setting the tone for his healing.
Obviously this has been a pretty dramatic week for us, and I should have plenty of time to write you all a thorough update on Sunday night. Thank you for the prayers and please keep them coming for pain management and no more surprises.
Prayers needed. Malachi just went back for emergency surgery. They found a twist in his intestine and they will be going in to untwist it and repair any intestine damage/death they find. The situation is a bit risky as his shunt tubing goes from his brain to his abdomen. If they find that any digestive or fecal matter has leaked out through a damaged part of the intestine there is a chance it could somehow find it’s way into Malachi’s brain area. This is not typically a life or death surgery but would easily turn life or death if we don’t do it right now.
Two more weeks. Jake goes back to school in just two more weeks and I have already started the mourning process. Having him home for the summer is an indescribable blessing and gives me a burst of respite care.
We had a week of adventure in the Carroll house as Jake’s family traveled down for a visit. We had a dozen people staying in our home and both of the kids thoroughly loved the cousin time. We held our first annual “Cousin Olympics” with temporary tattoos, seven events, and an awards ceremony at the end. The older cousins took turns helping Malachi compete in all of the events and he had such a great time. He even earned a 2nd place medal in the Sock Ball contest.
And of course, it wouldn’t be a cousin adventure without some sunset s’mores!
Jake’s family rented a giant 25ft water slide for the weekend and the whole drive over we talked it up to the boys, their excitement growing the closer we got. But when we got there we realized that it may be a little dangerous to try, especially with trying to protect Malachi’s body. But after all the hype we had given it we knew we had to make it work for him! We turned off the water portion and sent him down with Jake.
I took a brief video so you could see his sweet smile at the end:
Little Levi, on the other hand, was not a fan.
We have been working with Shiloh this week on retrieving things for Malachi. We have been watching both dogs to see which one has a better temperament for service and Shiloh seems to be the winner over Tuck. He and Malachi have a connection and he always wants to be close to him. He sits very still next to him to allow Malachi to take his time petting him. They are 70 pounds each now and 6 months old and we love having them in our world.
Malachi and I will leave next week for Nashville and I have been trying to map out a few fun things to do along the way in between appointments. He is very excited about getting to go on a trip with mom, and it is fueled by Levi’s tears as he screams that he wants to go too.
I started Malachi on a new medication this week called oral baclofen which we are hoping to use to reduce his seizures and help him sleep. It’s main use for kids with CP is to help tight muscles loosen so that is an added bonus but not the primary purpose for us. He was actually prescribed this in February but came down with COVID that same week so I put it on the shelf until I felt comfortable. The problem is that I really really really hate starting him on new medications. New medications tend to steal his personality from us a bit and then if they aren’t the right fit, weaning him off of a new med can take months. I finally felt like the time was right to start it, so here we go. He has been on it for 3 days and while he has been extra emotional it doesn’t seem to be doing anything negative to his system quite yet.
Malachi also got fitted for a new wheelchair this week, and this time he went with “Electric Blue”. He tells me he wants it to be superhero themed so I am finding accessories I think I can rig on there to make it special for him. It takes a few months for it to arrive, so it will be a fun distraction until it is ready for him.
One of my favorite chunks of scripture in the Bible is Isaiah 40. I am such an imaginative person and it paints such a beautiful picture of God. I memorized a chunk of this chapter in college and I didn’t realize how much it would ring true later on in my life.
”Do you not know? Have you not heard? The Everlasting God, the Lord, the Creator of the ends of the earth does not become weary or tired. His understanding is inscrutable. He gives strength to the weary, and to him who lacks might He increases power. Though youths grow weary and tired, and vigorous men stumble badly, yet those who wait for the Lord will gain new strength; they will mount up with wings like eagles, they will run and not get tired, they will walk and not become weary.”
I think weary is a perfect word for me. Our days require 100% from us, and because of the nature of caregiving I cannot simply take a day off. I haven’t had a full nights sleep in 8 years and the sleep I do get is littered with lots of wake ups to make sure the kids are still breathing and to check feeding pumps.
But as tired as I often get I have watched God take a limp and lifeless Leah and ask more from me. God doesn’t need my energy. He doesn’t need my best. There is nothing that God NEEDS from me. He simply desires my willingness.
In my own strength I cannot fulfill the expectations I have for myself. I cannot fill others expectations, or even God’s expectations with the meager portions of energy I have left each day. But it isn’t MY energy that God is looking for. He is looking for me to wait patiently on the Lord for Him to share His strength with me. That is what a real relationship looks like.
Jake and I find it humorous the things that God continues to call us to. Every time we think there isn’t anything left to give, God places another calling or task on our hearts and we walk in obedience. I often don’t talk about some of these callings because I don’t want to sound like I am soliciting glory from any of them. But I do have a point to make so stick with me!
Right now we are serving at the church as youth ministers. This involves leading Bible studies two nights a week and feeding them all in our home (30-40 of them) on Sunday evenings. I start cooking around 3pm on Sundays and finish cleaning and start blogging around midnight on. Most Sunday mornings I also serve on the worship team at church so we are go-go-go from sun up to sun down. We also do lots of events with them, including an upcoming overnight retreat for the girls in my basement.
Jake leads a men’s Bible study at the house each Saturday evening. The wives started riding along and now we have the men meet downstairs with Jake and the women meet upstairs for their own God conversations.
We are coaching the high school boys and girls soccer teams. This one is a calling, as odd as it sounds. Talking too much in detail about that doesn’t feel right, so I will leave it at that. This week they will be coming over to the house for dinner and bonding after practice.
I am still serving as the church secretary, which was most definitely something that God clearly called me to. My time in that role is coming to an end very soon, and I feel a peace about passing it on to someone new.
Even with all of these roles, all of these duties, and all of these expectations I still feel God tugging us to do more.
When you have faith in God, it also includes having faith that when He calls you to something He will also give you the resources, energy, and strength to complete the task.
When you have faith in God when he says jump, you jump…even when you don’t have any legs! God is the only one qualified enough to tell us our limits, as He created each of us with particular tasks in mind.
This rings true in my role as a mother as well as we have watched God time and time again carry me through WEEKS of three hour nights of sleep. He has carried me through over 300 days spent in hospitals at my children’s bedside.
This is obviously not written to bring any glory or compliments on Jake and I, but rather to encourage you to be a “Yes Man” to God. When the Holy Spirit tugs you in a certain direction just obey. Don’t overthink it. Don’t pros/cons list it. Don’t even give it a second thought. Obey and watch God give you a portion of His wisdom and His strength. Watching God use a lifeless Leah has built my faith and trust in Him way more than any powerful testimony I could hear.
Our family is back at home after a week away with the teens. We jokingly say goodbye to each other whenever we embark on a youth camp week because we want to free each other from all other focus but the teens and their spiritual needs. Although we do spend a lot of time in the presence of each other at camp we try to keep our focus on the kids.
I was very blessed to have friends come along this year who were willing to stay with my boys at the rental house, allowing me to attend chapels and very late nights with the youth. Most nights I didn’t get back until 2am and they never complained! What a blessing they were to me.
During the day times we all loaded up and went to camp for the day. Malachi and Levi were both so excited to spend time with the teens and Levi would giggle each day when we arrived. This has been a part of Malachi’s summer since his birth so it is old news to him and something he thoroughly enjoys.
Each year as I pack for camp I ask myself why in the world I am doing this. It is always an extremely long week for all of us and sleep is even rarer than at home. But every single year God reminds me in His own subtle ways why He is calling me to go back year after year. The conversations I get to have with these amazing teens about God is something special. Being able to be on this spiritual journey with them for 7 years of their life is profoundly impacting my own faith. I get to watch God grow these children of His from babies to eating the meat of God’s Word.
This year it took about 24 hours for God to point out why He had called me there that week. I won’t be able to go into detail on here as I want to protect confidentiality, but WOW did God move…and quickly!
As the devil often does, he noticed my joy as the week progressed and started to attack in subtle ways. At one point in the week the teens all do an obstacle course in the mud. This is always a highlight of the week so I drove Malachi down to the course area and set up a chair right next to the first mud pit so he could hear them splashing. The air horn blew and Malachi was on pins and needles listening to the kids enter the mud and run through it. Their squeals made him giggle and his joy was contagious. The kids all finished the course and headed on to the next thing and Malachi and I sat in that chair for an extra few minutes. His smile faded as the kids left and as I watched him intently listening for them as they moved away I couldn’t help but get a lump in my throat.
I could feel in my heart how much Malachi longed to be with them. How much we wanted to get in that mud and splash just like they were. I leaned down at one point and explained that no other little kids were in the mud, that it was only for the big kids and that answered was good enough for him. But soon the day will come when that answer will be a lie. And soon the day will come when Levi is able to do all of those things and the isolation Malachi will feel already breaks my heart.
Special needs parenting is so hard in so many different ways. Some of those I have yet to even uncover, but these glimpses of them are so hard to process.
I truthfully don’t know how many more camps I will be able to attend as Malachi grows. Right now we can still toss him over our shoulder and carry him into non-accessible places, but as he grows that might change. I am cherishing these special weeks until that day comes.
The word that the Spirit placed on my heart this week was “Authentic”. Our ability to bring others closer to Christ is severely limited, and in some cases counter productive, if we aren’t authentic in our faith and in our walk with God. So many times we hide the real us in an effort to portray what we think is a better version of ourselves.
1 Corinthians 1:26-31 “For consider your calling, brothers and sisters, that there were not many wise according to the flesh, not many mighty, not many noble; but God has chosen the foolish things of the world to shame the wise, and God has chosen the weak things of the world to shame the things which are strong, and the insignificant things of the world and the despised God has chosen, the things that are not, so that He may nullify the things that are, so that no human may boast before God. But it is due to Him that you are in Christ Jesus, who became to us wisdom from God, and righteousness and sanctification, and redemption, so that, just as it is written: ‘Let the one who boasts, boast in the Lord.’ “
There are words in that verse that are compliments that people would love to hear said about them: wise, strong, noble.
Then there are words that we would cringe about if they were spoken about us: foolish, weak, insignificant.
But it is those seemingly shameful attributes that God sees a need for Him. He sees brokenness that only He can fix, and when God works in and through our weaknesses the glory can undeniably rest on Him and Him alone.
Authentic faith is so important. Being able to share the good and the bad pleases God. Some of my most powerful God moments were in my weakest and darkest moments. God loves to turn ashes to beauty and bones into an army.
We witnessed very authentic faith this week start to grow and take root in many of our teens. Listening to their hearts was such a blessing and made me take a fresh look at my own level of authenticity.
Please pray for our family as we recuperate from camp and prayerfully choose a route to go with the group. It is always a wonderful challenge to take the fire they have in their hearts from a week focused on God and do what we can to keep the flame shining brightly.
Also pray for our upcoming trip to Nashville to meet with Malachi’s spine and orthopedic surgeon. I don’t expect bad news, but it always reopens the conversation about Malachi’s future and leads to some hard conversations and reality checks.
We are a 9 days post op and Levi is officially back to his normal, rambunctious self.
Whenever they clean his lungs his body registers something foreign and tries to fight it off. It is common to run fevers and feel a bit puny after a bronchoscopy as the body tries to figure out what is happening. Other parts of the procedure tend to irritate his airway and cause him to vomit for several days post op. This go around he had three days of vomiting by leveled back out by mid week.
Malachi met with the gastroenterologist this week to talk about his tummy aches; they spark his seizures so keeping them at bay is a big priority right now. We were given an emergency med for the tummy aches last time but this time we decided to go ahead and make it a routine, daily med. Administering meds has become such a routine part of our world that I feel confident I could do it in my sleep. But it definitely is a lot of to keep track of. Malachi takes 6 meds in the morning and 6 in the evening and Levi takes 2 each night and a water flush.
We spent some time with family this week at the bowling alley. Malachi was in a cranky mood so we weren’t sure that it was going to go smoothly. Once I started narrating the game to Malachi, frame by frame and pin by pin he was hooked and his attitude turned right around.
When Malachi bowls we place the ball and he pushes his arm up to knock it down the ramp.
He is very invested in it each time he rolls it. He waits expectantly for the crash of the pins and for us to tell him how many he knocked down. He so desperately wanted a strike but didn’t get it this time. He ended up in 2nd place and was legitimately mad about it, telling me that he was sad. He is si competitive- it cracks me up.
Then there was Levi, who was way more excited about getting to wear bowling shoes than actually bowling.
I haven’t mentioned the dogs on here lately, so I thought it was time for a quick update on them. They are just shy of 6 months and 60 pounds each! They don’t look like puppies anymore but they sure do act like puppies. They are sweet to the boys and very tolerant but don’t realize how big they have gotten!They have retained most of their training and are very well behaved, but still have to be watched closely as they are starting to try to chew on things. We are trying to train them to stay within the property lines and they are doing really well with the concept. And since they have been at the house we have not had a single bear come up to the porch like they used to! Our neighborhood camera have been picking up a lot of bears but none are making it to our front door.
This week we will be heading to South Carolina with 47 teens/chaperones from our youth group! Jake stays with the campers and I rent a house a few miles down the road each year and commute. It is a week we all four look forward to and we treat it as our family summer vacation. It is always such a blessing to be able to connect with the teens and help them grow closer in their walk with Christ. Yes, it is an insane amount of prep work, fundraising, and stress but it is so worth it.
For the last few years I have had two very sweet nurse friends come along to help with Malachi and Levi. I wouldn’t be able to manage going without their support!
Each year I spend time in prayer about the direction we need to go with the group. We like to give them a challenge for the week spiritually and on the final night we meet and all discuss the things God showed us throughout the week. We start around midnight and usually wrap up at 3am- something Malachi has prepared me for. Oddly enough I am usually the most wide eyed for these thanks to my years of training haha.
This year God led me to 1 Kings 19. If you haven’t read it, I want to encourage you to look it up. This chapter in itself is a devotional on so many levels and has so many relatable moments for me. But the things I am about to share with the teens are also so applicable for me as well, so I thought I would share them with you. This morning at church the pastor preached from this very chunk of scripture which made me smile in a God-moment type way.
In 1 Kings 19 we see Elijah going through a valley moment. He is running from an evil woman and he loses sight of his faith. God speaks to him and asks him one simply question: “What are you doing here, Elijah?”
God already knows the answer, so why did He ask the question?
Elijah, in his moments of weakness, had focused inward. This is something all of us tend to do in stressful moments. We forget all of our previous successes and focus on the current failure. We mourn over it, dwell on it, and put our eyes on our circumstance instead of the One who can draw us out of it.
When God spoke that question to Elijah I think it was meant to snap him out of his pity party. It was meant to refocus him on God’s plan and will for his life, and help him remember that even in our darkest days we have a Light that can never be extinguished.
Even in our valley moments God is working on something beautiful.
And like the faithful Father that He is, God took the time to remind Elijah of His presence. He took him on a mountain and we read in 1 Kings 19:11-13:
“Then a great and powerful wind tore the mountains apart and shattered the rocks before the Lord, but the Lord was not in the wind. After the wind there was an earthquake, but the Lord was not in the earthquake. 12 After the earthquake came a fire, but the Lord was not in the fire. And after the fire came a gentle whisper. 13 When Elijah heard it, he pulled his cloak over his face and went out and stood at the mouth of the cave.”
So many times we wait on God to get our attention with the grandiose things in our lives- the wind (change), the earthquake (tragedy), the fire (loss). How many times do we miss His voice because we aren’t listening for the whisper?
Listening for the whispers of God keeps us close to Him. With the help of the Spirit we develop an ear for His voice. But so often in our moments of intense listening we catch other noisy things that draw our focus away from Him.
In my life I need the moments where God whispers “What are you doing here, Leah?”
I need Him to call me out of my pity parties and refocus my ear on His voice. Watching God work is a learned skill. It is something you have to train your eyes for, and when you start to master it you see His hand in EVERYTHING! And when you see Him at work, with the ease of a gentle whisper, your faith is transformed.
This week I am challenging my teens to listen for the whisper moments of God. I want to challenge you (and myself) to do the same. Please pray for us this week and I am hoping to have some great updates to share with you next week!
Levi and I are back in Tennessee after an eventful week in Ohio! Let’s start with surgery updates…
I like to pretend that my life is normal, and it is weeks like this one that serve as a reality check. We successfully kept Levi from knowing that Friday was surgery day. I try to be very honest with Levi about his surgeries, although I don’t talk about it until we have to. He is a worrier and will stress for days leading up to the surgery.
Before procedures he has to go NPO, which means he can’t have food past a certain time (midnight this go around). Usually surgery mornings are escalated by him being hungry and sleepy which was definitely the case this trip.
We headed to the check in desk where I told the lady “Levi Carroll checking in for surgery” and as soon as he heard the word Levi began shouting “NO SURGERY NO SURGERY”. The anxiousness and tears began and although I could distract him for small chunks of time he kept returning back to the fear of what was about to happen. We had gone to the store the night before and picked out some special toys he wouldn’t be able to play with until “tomorrow” and that worked decently well.
There were no delays and they were ready to roll him through the check in process very efficiently. When his surgeon walked in Levi ran over and gave her a big hug, which surprised us both. But when the nurse came in with a Covid test, however, he lost his ever loving mind. He ran the gamut of emotions in the pre-op room and then the time came for him to go back to the operating room. Due to Covid precautions they haven’t been allowing parents to go to the OR to say goodbyes but for some reason they made an exception and let me carry him back. We got to the doors for the handoff- my absolute least favorite part- and he screamed as they pulled him from my arms.
I continually worry about the long term effects these repeated moments will have on our relationship. The trust is broken again and again, and the pain is induced again and again. Yes, it is what is best for him but sometimes I wonder about the damage it may be causing when he looks to me for comfort and I turn my back and leave the room.
Surgeries aren’t a one time deal with my children. They are repeated events that HAVE to happen. I was telling a friend this week how on surgery days I have to unplug the “mom” wire temporarily. I have to detach all of my emotions from the experience for two reasons: 1) using energy towards emotions depletes me 2) My boys will reflect my emotions- if I am calm they are calmer. So each time I unplug the wire and get the day over with as fast as possible.
These procedures typically don’t take very long and I almost feel bad for the other parents in the waiting area as I flutter in and out so quickly. I remember being in that very room being jealous of the other parents with shorter surgeries. I am a people watcher, but in that environment I keep my eyes down as much as possible as looking around makes me queasy.
Hospitals are a place of miracles but they are also a place of death. It is a place that you can have the best day of your life or the worst day of your life. It is a place that carries more darkness than light, no matter how hard they try to make the decor warm and inviting. The emotions in that surgery waiting room are thick and the tension can be felt in an indescribable way.
This time I tried closing my eyes to block off others but kept flashing back to an early Sunday morning when I sat in that giant room by myself. They don’t do surgeries on Sundays but this one was an emergency with Levi and I sat alone in an organize chair by the window. Instead of calling me into a parent conference room the surgeon just pulled a chair up next to me. The loneliness of those few hours in that orange chair is haunting.
Levi’s airway procedures breach two specialties so typically the pulmonologist comes in first to do the lung portion and the ENT surgeon comes in to do the airway repairs. When I get called to the parent conference rooms it is usually twice- one for each- then back to the waiting room until I am called to recovery. This time around I met with the pulmonologist for the update but the ENT surgeon was called into another surgery room so we ended up going on back to recovery. I had asked them to bring me back quickly before he woke up so I could change his g-tube while he was still coming out of anesthesia.
Levi woke up like a rabid raccoon as soon as I got his old g-tube out and started swinging. I was able to fill the balloon just in time before he sat up and started trying to hit the nurse and yanking on his IV. I bear hugged him so she could get the IV out, which obviously didn’t help his anger. He stayed mad until I told him we could put his clothing on and then he felt secure enough to calm down. We waited a bit longer so the ENT surgeon could come out for updates.
Here is a quick summary of the day:
-Levi’s vocal cords are both still paralyzed. If they are still paralyzed this time next year they will statistically never work in his lifetime.
-His airway is still wide enough for safe breathing but some tissue is starting to grow up around the airway which could become a problem before next year’s surgery. His adenoids, epiglottis, and arytenoids are all very large so it looks like we will be doing another supraglottoplasty in a year (if it can wait that long). These procedures involve trimming away some of the flesh and involves a hospital stay on the complex airway floor.
-Trach talk is officially off the table at this point. We are in a place where we have lots of surgical options to manage the airway.
-His lungs look stronger than last year. He has dropped the diagnoses of bronchomalacia and tracheomalacia! They have tested the fluid to check for signs of aspiration and we will hear those results in a week or so.
-Levi’s voice quality is the best it will ever be. Right now his cords are touching which gives him a stronger voice. If they get any closer he will not be able to breathe and we will have to surgically intervene. Ideally they would be slightly more open to keep air moving even when he is active.
-We are to watch him VERY closely, especially during physical activities to make sure he isn’t oxygen hungry. He has been having some trouble lately when he is playing hard outside and if that worsens to the point that we are having to limit activity we will have to make another trip up for the next surgical steps.
-I asked about how aggressively I should be pursuing oral feeds and they gave me the green light to really push foods but also cautioned that even if he didn’t need it that taking the g-tube out wasn’t a good idea at this point which the ways his airway could change.
Someone asked me if this was good news or bad news and I told them that it really depends on the mood I am in when I read them. I can find great things in this news, and I can also find devastating things in this news.
We still haven’t gotten our miracle that the cords start moving. That is continually my prayer. 27 times I have sat down with surgeons to have them shake their heads no. That creates some callouses in some pretty understandable ways. It also stretches my faith more than I am often comfortable with- but isn’t that really a good thing?
This week the emotions hit the hardest as I drove up to Ohio. I bottled it all in like I usually do, and as I drove down the interstate I just kept thinking how much I didn’t want to be doing this…this trip, this surgery, this life. I cried tears of anger that surgery trips fill our summer instead of the summer vacations other families get to enjoy. This life I have been called to is one I wouldn’t wish on an enemy and calls for me to give of things I don’t possess.
As the hot tears rolled down my face the Spirit put a word on my heart as He often does when I am choosing to listen.
In Daniel 1 we are introduced to Daniel, a man taken captive to Babylon. He was in a life he didn’t choose (sounds familiar) and in an environment that didn’t make it easy to honor God. In fact, it actually made it easy for him to set his faith to the side and enjoy worldly things. But the backstory to this scripture really isn’t necessary here if you just focus on these words…
“But Daniel purposed in his heart that he would not defile himself…” (Daniel 1:8)
As I rolled the word around in my head I started remembering how faith is an incredibly difficult thing to commit to. It is something that is not meant to come naturally, something that you have to purpose in your heart to pursue.
Faith is a choice. And it is a choice we are called to make free from the chains of contingencies and circumstances.
We are to “purpose in our heart” and continually choose faith. As I made that dreaded drive to Ohio I spoke this scripture to God and affirmed that even in this dark moment I would choose to believe that God’s purpose in this pain is greater than my comfort.
I can just imagine the smile on the face of God when we purpose in our heart to continue to trust in Him when the Devil has so clearly tempted us with the way and emotions of this earth.
While we were in Ohio we spent some treasured time with family. Levi was so excited to see everyone and gave hundreds of hugs this visit. We spent some time with my sweet 89 year old grandmother; Levi sat on her lap and stared at her face for several minutes, then turned to me and said “Mama, grandma old.” I cringed and he took it that I didn’t understand, so he repeated it again and again “She old. Old Mama. She old.”
Oh the honesty of 3 year olds.
Levi also fell in love with Skyline Chili this trip. He is hooked and I am totally okay with that.
Spending one on one time with him was actual more special that I realized it would be. He is talking so much these days and our car time was full of conversations and goofy moments. We made up silly songs, talked about life, and smiled a lot. We shared slushees and went to playgrounds that I would usually feel guilty taking Malachi to as they aren’t very handicap accessible. It was a special time for us.
Every night before we would go to sleep Levi would say “Me go home”. When I asked him why he wanted to go home he would say “Malachi”. He definitely struggled with some home sickness and missed his brother dearly, and I did too. It was so hard being away from him. Jake handled the caregiver role like a champ and we did a lot of FaceTime and phone calls.
Their reunion last night was special and I have been squeezing Malachi every chance I can get.
Malachi woke up with a tummy ache this morning and we have battled it all day long, finally using emergency tummy meds to help him calm down. He had three medium seizures as we got him ready for church so I decided to stay home with him and send Levi and Jake on. We were able to get the seizures to stop but he is still in some pain.
I told Malachi that he will get to do his one on one trip with mom in a few weeks (Vanderbilt to see spinal and orthopedic surgeons) and he is thrilled! We have a slower week this week and will be trying our energy reserves refilled before we embark to youth camp next week.
Thank you for covering us in prayer this past week as we faced another challenging medical trip. We had so many blessing moments from friends that meant so much to us. It is in weeks like this one that I am reminded how important it is to have brothers and sisters in Christ willing to carry burdens with you. Just like Job, sometimes all I need is some friends to sit cross legged around the fire with me in my sadness and simply be a present and willing ear.
May God bless your family this week, and may you choose to purpose in your heart to continue to walk in faith.
On Tuesday Levi and I will be loading up and heading north for his surgery on Friday. I have had many people ask me what he is having surgery on so I figured it would be good to summarize it on here. The short answer is: we won’t know what they will need to work on until they get in the operating room. We sign off on all procedures except for the trach and find out after surgery what was needed and performed.
Here is the long answer:
Levi was born with both vocal cords paralyzed in an almost closed position. The official diagnosis is bilateral vocal cord paralysis. The treatment for this is to put in a trach and wait until the child reaches 5 years old; 50% of kids with this diagnosis have vocal cords that wake up by then. If they don’t wake up by age 5 they will never wake up (aside from a miracle).
To summarize a very long journey, Levi was flown to Cincinnati at two weeks old to try several experimental procedures in an effort to avoid the trach. After several failed surgeries the surgeons agreed to try a very difficult and tricky surgery on him that they typically wait until they are older to try due to the size of the airway. It took several surgeons and several hours during which they opened up his airway and used a piece of his rib to prop open his vocal cords enough for him to breathe. Levi was the 2nd baby to ever have this done, and he was the smallest child to ever try this on. This procedure is called a single stage laryngotracheal reconstruction. I like to put the formal terms for things in the blog so if other parents are searching google they can stumble upon this possible treatment for their little ones as well.
Because there are no other previous examples to look at, we are completely in uncharted territory. The surgeons have been watching him closely to see if the new opening they created will continue to be “enough” for breathing or become “unsafe” for eating/drinking. To add to the intrigue, it seems that the gap is growing with him which can be a good thing (he would be able to breathe easily) or a bad thing (he wouldn’t be able to safely eat or drink and may lose his ability to speak). There are definitely pros and cons to all sides.
Right now Levi seems to be in a stable spot. He is breathing well, but when he exerts energy he starts to wheeze. This tells us clinically that his cords are still paralyzed but they will verify that this week. They will also clean out his lungs and tell us if they find any food particles. This would be a game changer as we would have to cut back on what he eats and drinks by mouth.
This week’s procedure is called a microlaryngoscopy and bronchoscopy and involves ENT surgeons and pulmonologist. I am relatively confident this is procedure #27 for him and at least 20 of those have been these same ML&Bs. In addition to his vocal cord issues he has some other areas of his airway and lungs that are floppy (called tracheomalacia and bronchomalacia). I have my list of questions for the surgeons and hope to find out some helpful information that will help us know how to proceed. For example, we have been working hard on getting Levi to eat by mouth, but there is always a chance that if we find food particles in his lungs we will have to cut back on that. I am continually hesitating on getting him to master new foods when I know there is a chance they can be taken away. That would be hard for any three year old.
Last year the doctors were thrilled at his progress and safety, which was very encouraging to us. We are hoping for another positive report but the potential for bad news is still lingering.
I have to be really honest, this week has been very challenging for me mentally. I keep thinking back to the early days of Levi’s story and some of the really hard times are sneaking back to the front of my memory. We experienced more failures than successes and the roller coaster of emotions took it’s toll on my heart. It is in weeks like this one that I recognize the PTSD and the trauma of what we went through during those months.
I flashed back to a conversation I had with a doctor near the end of Levi’s stay. There was a constant battle between the ENT surgeons and the NICU doctors over Levi’s safety without a trach. The NICU staff felt strongly that he HAD to be trached and tried frequently to justify doing so (against mom and surgeons orders). The surgeons kept clinging to slivers of hope and possible surgical solutions and I obviously jumped on that bandwagon.
One afternoon I spoke with a NICU doctor who was VERY agitated that I would not sign off on the trach. She looked at me with such anger in her eyes and said “If you try to take this baby home you won’t even make it to Kentucky before he stops breathing. You will be on the side of the highway performing CPR on him and he will die because of YOU. His death will be on your hands.” She then went to her office and typed up a paper that said I understood that if my child dies due to not having the trach that I acknowledge that it was a preventable death and 100% my fault. She asked me to sign the paper in a very bully-like manner and I responded by telling her that I wanted to speak with his surgeons again. If they said the trach was the only option then we would gladly sign off on it (the stance we always had), but if there was any other route to take we wanted to exhaust that first. She stormed out of the room with a trail of residents behind her. I am still appalled that parents are threatened and treated in such shocking ways when we are all supposed to be on the same team, finding the best treatment plan for each individual child.
The mental drama from that stay goes so much deeper than I have ever shared with you. We were at war for our son on a daily and sometimes hourly basis. Going back into that building is still traumatic for me, not to mention the agony Levi feels when he realizes he is going to have surgery again. We keep it a secret from him until he realizes it on his own.
So leading into this week I travel between the emotions of excitement to hear good news, fear of hearing bad news, dread on Levi’s behalf for the pre/post op moments, and a strong desire to get it over with. I don’t particularly enjoy talking about it with others. And I have several physical places in that building I have to avoid looking at when I travel through the hallways as they bring back a host of hard memories. The chair I was leaning on when I got a phone call that he coded…the slow elevator I had to ride to get to his bedside as they fought to keep him alive the night we arrived….those surgery conference rooms that I experienced so much disappointment in. The building is full of reminders and I often feel a cloud rise above my head when I walk through its doors.
Let me take just a quick minute and catch you up on the rest of life. Levi found a stack of pictures in a drawer from my baby shower for Malachi and took each one to him to show it to him and tell him who was in the photo. They are such sweet brothers.
Malachi is having a great, seizure controlled week. Seizure “control’ to us is him having less than 6 a day and no large ones. It brings my peace knowing he is doing so well right before I head to go out of town.
Leaving Malachi is such a hard thing for me. We literally sleep nose to nose so I can wake up when he seizes, so being away from him is always an adjustment. Jake is a heavy sleeper and I always fear that he will sleep through any emergencies with Malachi, so I have to give that over to God and remember that He has already set Malachi’s timeline here on earth.
Levi and I will be staying with family while we are in Ohio. Traveling with just one of the kids is always mind blowing to me, as it is astronomically easier to have just one set of needs to focus on. Traveling with Levi changes the car we can drive, the activities we can do, even my restroom breaks on the drive. When I am traveling solo with Malachi I restrict my liquids so I don’t have to leave him unattended in the car for bathroom breaks. As odd as it sounds since we are traveling for a surgery, time with Levi gives me a glimpse of “normal”.
Speaking of glimpses of normal, a friend invited me to a David Crowder concert this week and it sounded like a good opportunity to refuel a bit before our big week. I snuck away on Saturday and drove to the most amazing concert venue I have ever seen! It is called “The Caverns” and pre-Covid the concerts were held inside of this cave. Not they do the music portion outside of the cave to allow for social distancing, but the restrooms are still inside so I got a glimpse.
My friend and I had a wonderful time singing praise and worship and just doing something out of the ordinary!
This week I taught from Matthew 14 in my youth Bible study, particularly the part about Peter’s failed attempt to walk on water. I heard that story as a child but it wasn’t until recently that I saw my moments of weak faith looking eerily similar to Peter’s.
And I am embarrassed to admit this, but I find myself longing to stay in the safety of the boat.
In my life I have been called by Christ out of the boat many times. I have locked eyes with Christ and boldly and faithfully stepped out of the boat to walk towards His embrace. For years I welcomed these moments seeing them as an honor as I knew they strengthened my reliance on God.
But things changed dramatically when my precious children were added into the equation. Now I find myself getting sick to my stomach each time Christ looks at me from the middle of a raging sea and says “Come”. Each surgery decision, each new procedure, each new diagnosis is a raging sea moment that I don’t have the opportunity to ignore. It is a sea I must enter, holding tightly to my boys and masking my fear so as not to worry them.
I cling tightly to my sweet boys as I step with shaky legs into the tumultuous waves and try desperately to remind myself that He is faithful. That He is the calm in the storm, and I need only to rely on His power to keep me on top of the water. Yes, I still get distracted by the waves as I watch them jump up and strike my children time and time again. Like Peter many times I get overwhelmed by the storms and start to sink, shouting for God to rescue us.
Staying in the boat and holding my children safely in my arms seems like such a safer option…but my faith in that situation is placed in the boat itself…not in my God.
We each have a choice. We can choose a weak faith that stays in the comfortable parts of life, never being challenged and pruned, but never experiencing true growth. Or we can choose to leave the comfortable moments and search for faith challenging ones knowing that the fruit that we can produce after a pruning can be magnificent.
Faith was never meant to be easy. Sometimes as parents we are called to charge head on into the messy parts of life as uncomfortable as those parts may be. And while these moments may challenge our already weak faith in inexplicable ways, it is in these raging sea moments that our children see our faith come to life. I want my kids to see me as a willing water walker. I hope I can cast away my spirit of fear and trade it for a boldness like Peters.
This week is a walking on water week. As much as I desire to stay safely tucked in the boat I see the beauty and power of being called into the storm, as that calling leads me closer into the embrace of Christ.
I have learned to kiss the wave that throws me against he rock of ages. – Charles Spurgeon
Please pray for Levi this week as we go back to the operating room. Pray for traveling mercies, wisdom, and good reports. Please also pray for Jake and Malachi as hey navigate life at home together. 24/7 care for Malachi without brief moments of rest is difficult mentally. He brain and body defies logic, and pairing that with lack of sleep is very hard on the caregiver. Pray that Jake is able to build an extra dose of endurance and patience this week!
I am believing that I will have a good report to share with you next week!
I used to be a goal setter. I thrived with goals, setting challenges that were beyond my reach and taking great delight in achieving them. I would write the goals in journals, put them on sticky notes around my room, and stay up until 5am to knock one out.
I was always up for the challenges life threw at me…maintaining a high GPA in the midst of a tough college course…working three jobs while taking 21 hours a semester…succeeding at something no one thought would be possible fueled me.
As life progressed I realized that the things that I saw as challenges were things that could be achieved with a lot of hard work and a whole lot of determination.
Unfortunately that doesn’t transfer over to the special needs world. It takes hard work and determination, but it still isn’t quite enough. It will never truly be enough.
I have had to realize that some goals will never be achieved. I am unable to heal my children. And I have lost complete control of our day to day. And that is a very hard thing for me to accept.
I am at a phase in life where setting goals seems to do more damage than good. There are the obvious complex goals that are beyond my reach, but then there are the simple ones that require routines that we can’t afford to manufacture. We are still very much living in a survival mode mindset, unsure of what each day will bring with the boys. And those sticky notes no longer challenge me, but rather they taunt me.
We live day to day, hour by hour, and try to do all that we can to obey the calling God has in our lives. And the lack of control is something I daily struggle with, but I am learning to lean on God in those control freak moments.
We have learned to simply walk and look for the doors along the way that are opened by God for us to venture through. It has made me really process how God feels about us setting goals. I don’t have any feedback on that one, but maybe it will give you something to mentally munch on this week. I don’t believe that they are inherently bad, but I wonder if they do more harm or good to our faith walk.
We have watched Proverbs 16:9 come to life for us: “The mind of a person plans his way, but the Lord directs his steps.”
Why the long intro?
As I sat here and reflected on our week I found myself feeling so mediocre as a mother. We haven’t had any earth shattering moments. We haven’t had days filled with adventures and fun. We haven’t met milestone that I am excited to share with you.
But we have spent so much time together as a family. We have served in the name of Christ, giving energy we didn’t have because God called us to. We have made our boys laugh until they can’t breathe.
And even though we didn’t meet goals I feel like we accomplished some pretty immeasurable things.
And we also celebrated another wedding anniversary! Jake and I have been married for 13 wonderful years. We dated for 5 years before getting married so life with Jake is all I know. It has been so special to watch us grow as individuals and also grow as a couple in Christ.
These two little lovebirds back in 2003. This was the first photo I ever got of Jake.
Jake and I were able to sneak away kid free for dinner and a movie on our anniversary! These moments are rare and we definitely cherished our time together.
And on a silly note, we aren’t normally trendy people but I saw this one online and thought I would give it a try. It is an app that allows you to change yourself into a cartoon. They turned out pretty cute.
I do have some prayer needs this week.
-Levi’s surgery is less than two weeks away. I always get a little anxious leading up to surgery, worried they will find a reason to start the trach talk again. We went on lots of walks this week and his stridor was definitely significant after a few minutes of physical activity. Levi is also very anxious and remembers the Covid test from last year (which he will have to have again). So all kinds of prayers needed over that situation.
-I have been going through some spiritual refinement this week as God has been highlighting some areas that I need His help on. While refinement is ultimately a good thing it does require moments of discomfort and this week I have been extra sensitive to those. Please pray for guidance from God and obedience from Leah.
-Please pray for our endurance. I am physically, emotionally, and mentally exhausted. It is one of those exhaustions that taking naps or sleeping in can’t fix- this renewal has to come from God. Please join us in praying for that renewal.
I know this was an unconventional blog, but I needed a place to drop some thoughts! Thank you for taking the time to check in on our family, and tonight I will be praying Numbers 6:24-26 over you.
We spent the first official week of summer running some much needed errands, taking some much needed long naps, and soaking in the family time. Each day we played a family game together and watching the competitive spirit that seems to be innate in my boys is fascinating to me. They come by it honestly as Jake and I are both incredibly competitive, but interestingly enough Malachi seems to be pretty savage when it comes to games.
Levi is a phone thief and takes dozens of photos a day before I can snag it back. He took this one and it had a certain artistic flair to it.
Malachi and I headed to the hospital this week for a routine visit with his neurosurgeon. Malachi has had the same wheelchair for nearly 6 years and is about to outgrow it, but getting a new one is quite the tedious task. From start to finish it takes about 4 months to receive so we decided we needed to start the process now. In order to even get an appointment with the wheelchair company we have to have appointment notes saying that a medical professional suggests a new chair. His neurosurgeon clinic has an amazing setup for helping jump through the insurance hoops for equipment so we decided to go ahead and try through that specialist.
Malachi will need to do an MRI to check his shunt function in the next year, but for now everyone on his team feels confident that his shunt in functioning as it should. On that note, we are truly blessed in that area. Many shunts malfunction or fail within the first 3 years but Malachi has had his for 8 years now without any issues. Praise the Lord for the small blessings we are able to spot within this complicated life. Just in case we have new readers, Malachi had grade 4 brain bleeds at birth that blocked the ventricles from being able to release spinal fluid. The fluid goes in but cannot find its way out on its own. They placed a shunt (a machine under his scalp in the back of his head with a small tube that enters the ventricles) to move the spinal fluid from the ventricles and down into his body cavity. It is programmed with a magnet so they don’t have to go into the scalp again each time it needs to be adjusted. It is actually pretty impressive technology.
As I drove to the appointment I flashed back to a conversation in the NICU with this same neurosurgeon before we placed the shunt. For Malachi the shunt was necessary, but we discussed the pros and cons of one so I could feel like my decision was an educated one. I remember leaving that conversation feeling disappointed because he told me Malachi wouldn’t be able to play contact sports with a shunt. As odd as it sounds, this was one of my first losses of normal. I mourned over this, not having any idea of the severity of what our journey with disability would hold. As I flashed back to that I prayed to God and thanked Him for unveiling his plan for Malachi just a little at a time. It allowed my faith the build muscles before the true workouts began.
The boys spent some time with cousins and friends this week and even got to partake in a big water balloon fight. Little Levi definitely didn’t understand the process and kept tossing them onto the ground to watch them explode. Malachi threw sniper shots from the deck at his unsuspecting cousins, giggling each time he made contact with one of them.
Levi made some big steps this week at church and starting attending children’s church without mom and dad! Jake and I are splitting the youth group for Wednesday nights now (he is teaching the high schoolers and I am taking the middle school class) and being able to focus on the lessons without a three year old in the room is so refreshing.
Levi is talking so much more and listening to him is proving to be one of my favorite parts of the day. There is something so special about being able to have a conversation with your child. Malachi can definitely converse in his own way with his signs, but the creativity in Levi’s stories blesses my heart.
If you look hard enough at that picture you will note some interesting things. Yes, there are three puppies in that photo. We did some dog sitting this week for one of the puppies sisters. When you daily live in chaos, adding one more element to the mix doesn’t impact too much! Levi is also in that photo. The boys love to wrestle with Jake, and getting Malachi in a spot where he can safely participate is a fun challenge.
This week I talked with some of my coworkers at the church about the difference between activity and productivity. In a ministry setting I have an easier time distinguishing between the two. But in a motherhood setting that line gets a bit blurred. My days are JAM PACKED with activity, but at the end of each day I can’t spot a lot of productivity from the day. This is extremely hard for me. I am a mover and a doer. But in the role that I am in as caregiver and mother I am not able to be as productive as I would like. Some days simply keeping my kids alive and breathing is all I can accomplish. Other days, three loads of laundry is all I can knock out.
I have started to see that I have spent far too long placing my self worth in my productivity. Motherhood asks us to make so many sacrifices, and sacrificing my productivity is one of them.
Motherhood is a lot about activity. Sometimes it is about being present and helping littles ones be productive….helping them grow physically, grow mentally, and turn into beautiful souls.
And I am learning that the seasons of motherhood change more quickly than the earthly ones do.
But I have also realized something else this week. It is in this season of activity without much productivity that I am able to dwell more on God. I often get so wrapped up in my busyness that I am unable to mentally focus on my walk with the Lord.
In Psalm 46 we find a verse that is very simple yet profound: “He says ‘Be still, and know that I am God;’ “
I have always read this verse in the context of the verses around it, meaning that we need to trust that God will fight our battles for us (read Exodus 14 this week for a GREAT devotional thought along that line and ask God to speak to you through it). But when I apply it to my life right now I see God reminding me that it is in the still moments that I allow my eyes to search for Him.
When I put my self worth into productivity I deplete myself, leaving scraps of energy for time with the Lord. Sometimes we need those quiet, reflective moments to help us remember that our self worth in Christ is just as meaningful in the quietness of life.
It is in these moments that I remember that God doesn’t NEED me. I need Him. And while my productivity can most definitely impact the Kingdom of God in a mighty way, God can produce an even greater crop from a mustard seed that I don’t spend hours cultivating.
This week I am trusting that God is honored in my moments of activity, as my heart desires that even these moments bring great glory to His name.
And I am so, so thankful for His grace.
Please continue to pray over Malachi’s ability to rest. He is staying up until 3am each night and back at it around 8 each morning and his body and brain need more rest. Also please cover Levi in prayer as his Cincinnati surgery is less than 3 weeks away.
Jake is officially off for the summer, and I don’t know that you will find a happier wife in the whole state of Tennessee. Having an extra set of hands to help with the boy’s needs is such a gift. It also allows me the freedom to take each boy individually to their appointments and focus. Our summer is packed full with medical appointments but sharing that burden with Jake makes it manageable.
So what is on the summer horizon for the Carrolls?
We have a surgery for Levi in Cincinnati in about 4 weeks. Right now the plan is for he and I to go solo like last year. Traveling with both boys is getting increasingly more difficult the larger each of them get and Covid precautions are still hindering visitation policies when one of the boys has to be in the hospital.
Our annual church youth camp is coming in early July, which is always a fun adventure. This year we have 48 teens signed up to go, praise the Lord!
Malachi’s big Vanderbilt trip to meet with the orthopedic and spine surgeons will happen at the end of July. This has been stretched out to a multi-day trip to meet with all of the specialists.
We have some family adventures tucked into the gaps, and all of our regular appointments and therapies sprinkled in the mix.
We got a head start on the adventures this week as we drove to Georgia to meet up one of my siblings and his family for the weekend. The boys loved the cousin time and got to meet their newest cousin for the first time. We try to be extra cautious about posting photos of others on the blog (for privacy purposes) but these were too sweet to not share.
As I have mentioned, Malachi is tuned in to EVERYTHING happening around him and so making sure to include him in as much as possible is still one of our top priorities. But to be transparent, it is shockingly exhausting and physically taxing to try to successfully be the body of an 8 year old. I catch myself thinking about the days in the future that I won’t be able to physically help him feel included and I wonder how that is going to change our outing decisions as a family.
But for this trip Malachi zoomed down the slides, chased cousins like monsters, crouched in corners playing hide and seek, and went as high as safely possible on the swing set.
We had enough room in the house to divide into two bedrooms, making nighttime more manageable. Being out of our routine and environment is so, so difficult!
But sometimes Pros and Cons Lists shouldn’t always drive decisions.
There may be some times in life when the cons of something will far outweigh the pros. And even though logically it doesn’t make sense to go for it, sometimes you simply have to commit to the illogical route.
Yes, there are consequences and discomfort, but fear of those should never be the reason that we don’t take time to intentionally love others.
If I am being completely transparent I will also note that I don’t have much energy or stamina for these “cons” heavy trips and excursions. Malachi did not sleep well, and we had at least 6 close calls in two nights with pillows that were too fluffy. I ended up swapping them for rolled up bath towels so he wouldn’t be able to suffocate himself. Waking up to him gasping for air is forever one of the most terrifying things.
We will spend the next week recovering from our two nights away, but I am grateful for the memories and the opportunity to see my brother!
Here are some photos from horse therapy this week. Levi got to practice painting the horse and giving him a bath after.
On Wednesday I finished a study with the youth about Jesus’ Sermon on the Mount found in Matthew 5-7. If you haven’t taken time to read that in awhile I want to encourage you to start to read it again this week, even if it is just a few verses each night. There is so much power in the words knowing that they came from the mouth of Christ and the heart of God.
Matthew 7:13-14 “Enter through the narrow gate. For wide is the gate and broad is the road that leads to destruction, and many enter through it. But small is the gate and narrow is the road that leads to life, and only few find it.”
This verse has challenged my heart this week about the intentional nature of my walk with God. We are all given the opportunity to choose the road we will walk on in our faith. We will never “accidentally” find ourselves on a narrow road that requires a Guide for us to shadow step by step.
Sometimes I catch myself going on auto-pilot in my relationship with God. Instead of focusing on keeping my steps in line with His I find that I am aimlessly following the muscle memory of my shuffling feet on that narrow road.
One of the devil’s tactics is pushing our faith to become a chore rather than an intentional journey, which is not God honoring. Before we even realize it we migrate over to the wide road and confuse our movement for steps in our faith walk.
This week I have been evaluating and praying about what my reset needs to look like. The word “intentional” keeps being placed on my heart so I know that is something that God desires to bring to my attention.
Is your walk with God an intentional one? Are you content on the narrow road that faith in God requires?
So many thoughts swirling in this brain of mine, but I need to develop them a bit more before I share them with you! Thank you for taking time to check in on our family. We continue to ask for your prayers- there are specific needs of course but a good summary prayer need is wisdom and strength for each new day.