We are wrapping up another week of laughter and tears, calm and chaos. You never quite know what emotions each hour will bring!

We had our first soccer home game this week so we hauled the Wild Raptor for Malachi and the pickup truck for Levi!

The boys both genuinely love going out to the games each week. Levi has started clapping when the crowd claps and Malachi loves the variety of emotions the games bring out in the stands.

Levi had his follow up eye appointment with the surgeon on Monday, and once again I left the appointment and bawled in the parking lot. I have dealt with neurosurgeons, orthopedic surgeons, heart surgeons…lots of big surgeries and diagnoses. But for some reason these eye appointments seem to be my kryptonite. I always leave feeling like such a bad mother.

Levi obviously didn’t cooperate with the eye exam after a very long two hour wait. We have surgically fixed the alignment of his eyes, a byproduct of his brain damage. But he has a secondary issue as well, a lazy eye (thanks genetics), that can’t be surgically corrected. The best treatment is patching the good eye and hoping the weak one will grow stronger. If it doesn’t improve the brain often shuts off vision to the bad eye causing blindness in that eye.

Now that Levi is stronger and much more opinionated he refuses to keep a patch on his face, not to mention any oxygen tubing. Everything gets ripped off in a hurry. When I explained this to the doctor he told me that Levi was likely one of those kids that would just have to be blind in one eye since we aren’t able to patch. He said other parents “just sit with the kid and keep them entertained for the 1-2 hours of patching each day”, which inadvertently made me feel like a bad parent for not being able to successfully do so.

Levi was all over the office during the appointment, trying to open every cabinet drawer and empty it’s contents all over the floor. I felt such judgment from the surgeon and nurses as they watched me chase after him. But they don’t understand that this sweet boy spent the first five months of his life trapped in a hospital bed. Seeing him get into everything he can reach makes my heart leap with joy.

As I left the office I just felt so discouraged. I am so incredibly tired of continually hearing that my boys are broken. I am so tired of discussing bad future outcomes, and things that will “likely” happen. I sat in the car and allowed myself a good 20 minute cry as I mourned over the things I can’t take from them.

We are going to try eye dilating drops in Levi’s good eye with the hopes it will make his weak eye stronger as it tries to focus on things. This will make him sensitive to sunlight and will have to be done every day for likely several years. It really isn’t a good solution either, but we are out of options.

By the time he reaches an age where I can reason with him and explain the patch he will already be too old for it to make a difference.

Switching topics, we found this cool new stroller seat that connects to the back of a wheelchair! I haven’t tried connecting it yet but will see how successful it is later this week.

On Wednesday nights in our youth group we usually end up with 25-35 teens, and Sunday evenings are much lower with maybe 10 kids. We decided we would start switching things up (I know, we are crazy) and have the kids come over to our house for Sunday night Bible study. We spent all weekend prepping the house for the youth, and today I broke out the kitchen gear to prep snacks for them. I felt so…normal. Oddly normal. I used to love to cook, and being able to do so today felt good.

Both of the boys were giddy with excitement as the teens slowly started to fill the house. We ended up with 25 at the house, Malachi clinging on to every word and laugh. We are planning to make this the new Sunday night routine so please pray with us that God protects our home from any potential sickness!

When we built this house we specifically designed the basement for having Bible studies and youth activities in it. We prayed over each room and buried a verse under the foundation that had been chosen for each specific space, and the one we chose for that main area was done with the teens in mind. Since Levi entered the picture and required being on the main floor due to the oxygen concentrator, we decided it was unrealistic to host anything. But having the chance to have the kids over routinely is such a fun new adventure. And it forces me to clean each week haha.

Levi has recently started loving an audience. On Saturday night we met with some church friends and he was showing off his new walking attempts. Here is a silly video:

And another silly video of Levi singing. He has started humming while he plays by himself, and Jake does the exact same thing. It is so sweet to hear his little voice.

Malachi made it to school three days this week but had to be picked up early one of them due to some big seizures while he was there. I usually leave Levi strapped into his car seat while I walk Malachi up to the drop off doors, but on Tuesday he just wasn’t having it. I loaded up Malachi into his chair and carried Levi for the drop off. He was mesmerized, but started to cry when he watched them wheel Malachi away. I tried to explain the process to him, but he wasn’t satisfied until we picked Malachi back up that afternoon.

Levi knows no danger. And this week he mastered opening doors…including the front one. And wouldn’t you know it but ten minutes after he successfully opened the front door for the first time the neighbor texted and said she had just walked up on a momma bear and two cubs out in front of our house. Ahhhh.

We had another young bear stop by a few nights ago and check out the front door. He was much smaller than the others we have been getting!

Danger boy and all these bears are making us a nervous wreck so we have been in baby proofing mode. Well, I guess it is the next level up from there as we are having to prep the house for a Macgyver.

I turned around yesterday and he had crawled up to the table and grabbed two forks banging them on the table like a savage.

Malachi rocked his therapies this week! His work ethic is so special- he wants to give his 100% to everything that he does.

Wednesday’s horseback therapy had to be cut short as the heat just withered all of his energy. We got the horrible news this weekend that the horse he rides passed away very suddenly. I haven’t told him yet, but will be trying to find a way to explain it all to him. He has been riding that horse for many years.

Both of the boys absolutely love feeding therapy each week.

Levi is starting to get more picky with his food and is still choking often on solids. But we will keep practicing!

This week I have been bit big time by the worry bug.

My mind keeps wandering to thoughts that I dare not go toward often…thoughts of Malachi’s life and how it might end. All of these fears prompted by the dozens of children like Malachi in my support groups who have been called into heaven in the last few weeks. This is the time of year that sickness begins to wreak havoc on poor immune systems like Malachi’s.

Will he be taken quietly in his sleep?

Will he pass away during a unstoppable seizure?

Will he go in for a surgery and never make it off the operating room table alive?

Will he outlive Jake and I, which brings a whole new set of fears?

Will he smother himself, something that I could have prevented had I been more watchful?

My mind has wandered towards these horrible thoughts all week. And as much as I try to push them aside, they continue to play on repeat.

I am a self-admitted control freak. And there are so many stinking things in my life that I simply just can’t control. So I have this tendency to try to play out every scenario in my mind with the hopes that I will prepare my heart for what might happen.

But boy, oh boy, worry can suck the energy right out of you. These thoughts exhaust me, and I can feel the weight of them growing heavier on my tired shoulders.

In Psalm 23 there is a verse that says “Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff they comfort me.

I never understood what the shadow of death was until I encountered these thoughts with Malachi. And there isn’t really a better way to describe them other than a “shadow of death” that lingers in my thoughts.

As a child of God, I know better than to worry…but I still worry.

Even as the worry sucks my breath away I feel conviction for letting it fester that far. But yet I still let it continue to overtake my thoughts and prayers.

I read a verse this week and it was like God snapped His fingers bringing my attention to something big in it.

1 Peter 5:6-7

⁶ Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. ⁷ Cast all your anxiety on him because he cares for you.

Read that intro again: Humble yourself.

I have always seen worry as a weakness, but as I read this verse I was reminded that worry is also a form of pride.

When we are unwilling and unable to release our worries to God we are assuming that they are something that we can handle on our own.

God wants to turn our stubbornness into a heart of submission…a heart that reaches for the rod and the staff for comfort, trusting that the Shepherd knows the path we are about to embark upon.

Pride has always been my #1 sin, although many other sins spawn from that pride. And now I see that my worry is no exception!

God doesn’t love me any less for this weakness. But He longs to take the burden from me that I insist on continually placing on my own shoulders.

So this week I will try to interrupt my worry tinged thoughts and replace them with prayers that God will uproot my pride. I pray that I learn to speak AND BELIEVE that God’s future plans for Malachi are perfectly in line with the will of God.

So here I am, again, casting my cares on Him. May God help me control my hand this week and not reel them in again!

Much love,

Leah

 

 

 

 

Let’s start this week’s entry with a silly story from this morning. Hopefully it will make you laugh as much as I did. And the title of this blog is meant for the devotional at the end but is oddly fitting for this story too.

And a short time-out to acknowledge how big Malachi is getting. Seriously, where did my tiny baby go? Facebook reminded me this week of how tiny Malachi was, hitting the 9 pound mark at 6 months old! My oh my how far we have come from his 1 pound 12 ounce birthday body!

This morning I woke up and looked at my ragged face in the mirror- always a dangerous game and one I don’t often get time to play! We have had a jam packed weekend and Malachi woke up for the day at 3:30. As I looked at the bags under my eyes I decided to take an extra few minutes on hair and makeup before leaving for church. I even took the time to pick out a pair of earrings, something I never have enough brain power to remember. I just wanted to feel pretty this morning for some odd reason.

The morning was going wonderfully and I left the sanctuary with the boys when the preaching began; we always listen from the lobby area so Levi can be his wild self and I can still hear the sermon. I scooped Malachi up and put him on my lap and I suddenly felt the warm sensation of him peeing all over me, and the puddle of urine on my dress confirmed it. I was debating what to do, and I thought the first step should be to fix his diaper so he doesn’t do it again. Without being too graphic, I quickly checked to make sure everything was tucked into the diaper as it should be.

I leaned down to take a quick peek and as I did so Malachi contracted his little abs and shot a two foot stream of pee right into my eyes with a ridiculous amount of force…like a water hose to the face. Within seconds I was drenched, literally dripping urine from my hair. Pee was everywhere…running down my face, running down my arms, and all over the front of my dress….not to mention the puddle that was already on my lap.

I gasped and froze, not quite sure what to do in that moment. Then I realized what had happened and couldn’t stop laughing. I laughed so hard I started crying, which was probably good for flushing the urine out of my eyes. I texted Jake to come out of the service to help and when he saw that I was dripping like a wet dog he too started hysterically laughing. I stepped into the restroom to see what I could do about damage control and I saw the hair I had spent the extra time fixing and the eyeliner I had put on for the first time since Easter running down my face. The whole idea that I had tried and failed so miserably at looking presentable made me start laughing all over again.

Needless to say, I packed the boys up and headed home.

Moments like these tend to come more often these days. I am trying to learn to roll with the punches, but sometimes the moments are just so ridiculous that I can’t help but throw my hands up in surrender.

We met with the Chattanooga pulmonologist this week about Levi’s Cincinnati trip. I had assumed that he had already read the notes that Cincinnati had send over but when he casually walked in and asked how things were going I realized that he hadn’t heard the news yet that his cords were still paralyzed. I delivered the bad news and he seemed genuinely shocked; his reaction was very similar to mine when the surgeon told me. He was confused, doubtful, and flabbergasted.

Levi had a grand ol’ time looking at the boy in the mirror.

Doctor visits are getting more and more difficult and exhausting these days. Levi wants to be mobile and I desperately fight to keep him from touching the germy ground in the medical setting. By the end we are all cranky and exhausted. I took this silly video of Levi as we were passing the time playing with bubbles.

Cincinnati would like for us to do another sleep study off oxygen and make sure that Levi is still breathing safely at night. Sleep studies are in the top three of things I absolutely hate to do to the kids. But if they think it needs to be done we will begrudgingly comply. We will be scheduling that soon, but it usually takes about two months to actually get him in there.

If the results say that he is breathing safely, insurance will be taking all equipment from our home. We have several tanks, an oxygen concentrator, and a pulse oximeter machine to monitor his stats and heart rate at night. He is only needing oxygen when he is sick right now but knowing it is there when we need it brings me peace. I am very anxious about losing the pulse oximeter as it gives me the peace I need to take my eyes off him at night. He is still dipping his oxygen a few times each week causing the alarm to go off so I jump up and make sure he is still breathing and doesn’t have his cords wrapped around his neck.

I looked into purchasing a hospital grade one like his and they are over $1,000. The disposable sensor strips alone are $25 each and he burns through those every 5 days. We may look into trying to get a grant to help cover that cost so we have the ability to monitor his oxygen levels, especially when he is getting sick.

Levi’s new favorite hobby is unrolling the toilet paper from the roll.

The boys have also been so sweet with each other. I tried to snap a few pictures to document the sweetness for you. Malachi has been generously kissing Levi and Levi in turn wants to sit close to Malachi and hold his hand. I love their tender hearts so much.

Malachi went to school three days this week! He is technically a first grader, but he is in a CDC classroom and spends a bit of time in inclusion classes. He was so excited to see his friends and teachers! He is so opinionated these days so I gave him several outfit options to choose from. Do you want to wear Superman? NO    Soccer ball shirt? NO     Big brother shirt? NO    Ninja Turtles? YES YES YES!!!

Ninja turtles it is!

We have been trying something called Real Food Blends with Malachi, a diet that consists of pureed adult foods like salmon, squash, oats, etc made specifically for adults with g-tubes. It has been settling very well with his belly and sustaining him longer than his formula. Last year his school scheduled revolved around his feeding schedule so I wouldn’t take him in until 10:45 and pick him up at 2:00. This week we have been successfully doing 9:30-2:30! That is a really long day for Malachi but he is tolerating it very well, and he hasn’t had a single seizure at school!! That is wild!!

We found a new wheelchair tray and it has been an absolute game changer for his posture in the chair. Such a simple addition but it makes a world of difference for him. He is able to sit up at 90 degrees now and uses the tray for coloring and playing with his toys. This may be my newest favorite picture of Malachi.

We knocked out grocery shopping, 6 therapy sessions, and a handful of doctor visits.

We also attempted some new foods with Levi. Some went well, others not so much.

Saturday we spent an entire day (7:00am-7:00pm) with the soccer team at a play day an hour away. I usually don’t get to go to these and stay all day since Malachi is so heat sensitive and can’t be outside for long periods of time. Our amazing friends volunteered to drive their air conditioned travel trailer out to the fields for us so we could have a comfortable place to sit with the boys between games. The gesture blew me away. The more I thought about their kindness the more it impacted me. Our days can be very long and very challenging and when someone chooses to step into our world to find specific ways to help it means so much. It is like a balm to my weary soul.

This morning as I sat with Malachi I started to process what our friends did for us, and I got emotional. Life has never been easy for me and I have not often been a priority to others. I have had to get used to a life of sacrifice even at a young age, and sometimes that prompts some pretty big pity parties. But when we are a child of God, our focus shouldn’t be on our needs being met…we should trust that God will arrange those details for us and instead shift our focus to meeting the needs of others.

As I read through Philippians 2 this evening a few things caught my eye…

The chapter charges us to be like Christ, especially in how we interact with each other.

One of the biggest challenges for me is found in verses 2-4: “Do nothing from selfishness or empty conceit but with humility of mind, regard one another as more important than yourselves; do not merely look out for your own interests, but also for the interests of others.”

How often do we do these with hidden agendas and ulterior motives? We may be doing what seems like a selfless act but in the back of our minds there is a secret reason why we are doing it….do we expect something in return? Do we hope someone specific will notice or reward our kind gesture? How often do we mask our own ugly selfishness? The Holy Spirit is quick to play this verse on repeat in my mind and heart when I am guilty of this very thing.

But if you keep reading there is something noteworthy in verse 7; I want you to read it in context:

5 “Have this attitude in yourselves which was also in Christ Jesus, 6  who although He existed in the form of God, did not regard equality with God a thing to be grasped, 7  but emptied Himself, taking on the form of a bond-servant…”

As I read these words they pricked my heart. How often do I truly empty myself for others? How often do I gladly choose to take on the heart of a servant and give the fragments of the energy I have left to others?

When we are truly taking on a heart like Christ’s we should be looking to empty ourselves, and in turn rely on God to refill us. Why are we so cautious with our kindness, almost as if we believe if we give too much kindness away we won’t have any left for ourselves?

How often do we limit our selflessness due to selfishness? How often do we try to make our selflessness conditional based on our needs at the time?

I know I am guilty of both of these things.

So this week I will be praying for opportunities for me to pour out my reserve. Those tiny fragments I try to cling to are the result of my selfish nature; if we truly want to be like Christ we have to allow ourselves to be emptied.

Alright, my eyes are officially crossing as we approach midnight and Malachi is still wide awake! I am going to work on getting him ready for bed and starting tomorrow with a new, fresh, urine free face and eyes that look to fulfill the needs of others.

 

God bless,

Leah

 

 

 

Let the games begin!

Each August Jake heads back to work and life simultaneously amps up for us. The high school girls soccer team that we coach officially started their season this week which takes up every Monday, Tuesday, and Thursday afternoon. We are still youth pastors at our church which fills our Sundays and Wednesday night. Jake leads a boys only Bible study on Saturday evenings. And then there is life….lots of medical appointments and therapies every Tuesday, Wednesday, and Thursday. And add in my part time job at the church every Monday, Wednesday, and Friday from 10-2.

Life. Is. Bonkers.

But Jake and I both feel so strongly that we haven’t been placed on this earth for the four of us Carrolls. We need to pour out as much of ourselves as we can, trusting God to refill that energy supply.

With Jake back at work I took over bedtime shift, 4am shift, and early morning shift with the boys. Needless to say, my mood hasn’t been stellar this week as I am trying to adjust to the new schedule. I have been very short with the boys, getting frustrated at tiny little things. One morning this week I had yelled out of frustration which left both boys and myself crying and me googling anxiety medication. I felt terrible making them cry so I apologized and we prayed that God would help mom with her anger.

That night Malachi and I said another prayer that God would help him sleep through the night, something that hasn’t happened in months, maybe even years. We went to bed and woke up to sunlight peeking in the window! I snuck Malachi out of the bedroom so we wouldn’t wake up Levi and told him excitedly that Jesus answered our prayer! We rejoiced together and celebrated until we heard baby Levi crying in the other room. I set Malachi down to go get Levi so he could join the party.

When I walked into the bedroom and looked at Levi I saw that his outfit was sopping with formula. My heart skipped a beat as I ran my hand over his belly to check on his g-tube. And sure enough, one of my biggest fears had come true- his stomach tube came out in the middle of the night.

Stomachs heal insanely fast, so you have a two hour window to get the g-tube back in before the hole closes. Since it had happened in the middle of the night I wasn’t sure how far into that two hour window we already were and the local children’s hospital is an hour away. I stripped him down quickly to get a look and the hole looked completely healed. I grabbed a spare g-tube and pinned Levi down with my knees to try to get it back in and he fought me like an alligator. The tube did not go in and the site started to bleed.

At this point I was an anxious mess yelling out prayers to God for His help and running around like a wild woman. Levi didn’t trust me anymore since I had pinned him down so he was running from me as well. He likes sink baths so I filled the kitchen sink and set him in it so I could get close enough to look at his tummy again. I called a nurse friend down the road to come by and help hold him down and started to pack our hospital bags, assuming we were about to have to go into surgery. Jake is a basket case with medical surprises so I had zero intention of telling him until after the surgery was finished.

As I packed our bags my emotions overwhelmed me and I started bawling. This was the morning that God had answered Malachi and I’s prayer for sleep- and the devil attacked me in another way. Every single night when I get up with Malachi I check Levi’s tube, once when I get up with Malachi at 4 and once when we go back to bed at 6:30. Since Levi’s birth there has not been a night where I didn’t check the tube…except for this night.

I looked at the g-tube that had come out of his belly and the balloon that holds it in his stomach just completely popped. Think of an earring being held in an ear by a stopper on the back…and then the stopper essentially blew up letting the earring slide right out. Total fluke and not super common.

My friend came over and we tagged team pinning him down as I tried desperately to get the tube in. Fail. Fail. Fail. I ran out to the car and dug out a catheter I had in our emergency medical kit, hoping that the rounded tip might go in easier than the one I was trying. I know this all sounds so dramatic, but you need to know that for me in that moment it was totally dramatic! The muscles in my body were quivering with the stress of trying to hold him down.

And then the catheter went in. BOOM. I shouted THANK YOU JESUS and took a deep breath. If that catheter went in it meant the hole was still established. It took a few tries but I was able to get the catheter out and slide the tube in, avoiding a trip to the hospital.

Levi and I were both a mess by the time it was all over, and Malachi was wide eyed with excitement at everything he was hearing and the emotion in the room.

After my friend left I allowed myself another messy cry. We crave normalcy for Levi, and things like this remind me that we are far from that normal. I want to have normal mom frustrations, like cleaning up a taco my child chucked across the room. Not emergencies that involve me pinning my child down and inflicting pain on him. Blatant reminders like this chaotic morning are often an undesired reality check.

But in the midst of the stressful, we had some great moments this week too.

Levi got to ride in a shopping cart by himself for the first time! He grinned the biggest grin when I first put him in. Then of course he spent the next 30 minutes trying to sneak out of it when I wasn’t looking haha. Being able to push him in the cart and just pull Malachi made life so much easier!

The boys love the adventure of going to the soccer field with us. Due to the emergency potential I described above, we rarely leave the boys out of our sight. Thankfully we have my mom and some great friends willing to keep the boys company on the sidelines. We have been bringing Levi’s new truck so he is happy as a clam. And Malachi loves to hear the excitement of the fans. It does get a little hot so we have to be cautious about him overheating, but so far so good.

 

Levi tends to attempt walking more on the grass so we worked on taking a few steps! He is so so so close to walking.

The boys got to go to our soccer pool party….

And our back to school youth worship rally and pizza party….

And Malachi rode his horse like a champion. I wish I could get more photos of Malachi but he requires too much support for me to safely get good pictures of him. We started him on a new diet this week and so far it has had some pretty great results.

This week we have six appointments, including a visit to the Chattanooga pulmonologist to talk about the Cincinnati findings.

While we were in Ohio we were around people who aren’t used to Malachi. It is always so interesting to me to watch how different people interact with him. It always warms my heart when we come into contact with someone who truly SEES Malachi. Someone who sees past his physical differences and recognizes the sweet and silly six year old boy inside. Those people are rare and special, and Malachi connects with them instantly.

It is these people that take the extra few seconds to speak directly to him, and are surprised when he reacts to what they are saying. Malachi will always speak back in his own way, sometimes with his signs, sometimes with his eyes, and sometimes with his body language.

I always appreciate the people who see him and connect with him.

My friend told me a few weeks ago that she had a dream about me and the boys. She said when she walked in that both of the boys were teenagers and walked over to greet her. She looked at them surprised to see them typical and walking, smiling shyly at her as she talked. She said she turned to me and I unwaveringly told her “This is how I see my boys.”

When she told me this dream I teared up at its accuracy. I see them as whole. I see them as two of the most precious and beautifully unique jewels that God has ever created. They aren’t like everyone else, nor were they ever meant to be like everyone else. They are perfectly imperfect.

Malachi’s spirit is special. And when others get a glimpse of that my heart is so proud.

In Luke 1 we read about the angel Gabriel appearing to Mary to tell her she was going to bear the Son of God. Gabriel starts out his introduction with: “Greetings, you who are highly favored! The Lord is with you.” He goes on to tell Mary “Do not be afraid, Mary; you have found favor with God.”

Sometimes I think we forget that God is hand picking each of us for specific tasks. For Mary it was to be the mother to Jesus. For me it is to care for two special little boys. Both of us mothers with tasks that we never imagined we would be given. But both willing and eager to carry out the assignment God has given us.

As I thought about Mary this week I fast forwarded to the pain in her journey of having to watch her son die, and I was reminded that sometimes that tasks that God asks us to do are not easy ones. Sometimes the jobs he calls us to are not glamorous, fulfilling, or desirable. Sometimes they end in unimaginable sadness and grief.

But before you were given that job, God looked at you and said: “That’s the one. That’s the one that can handle this task.”

Often times we look at hard things as a punishment. But Mary’s task began with God sending an angel to tell her that she had found favor with God. He saw her, He was pleased with her heart, and He trusted her to do a very important job.

When I read that I am reminded yet again that God sees a strength in me that I sometimes can’t see in myself. Maybe some of you can also find your “Mary moment” and recognize that God sees you as highly favored, which is why he sent such big things your way.

Please pray for supernatural strength this week as we continue to adjust to our new routines.

God Bless,

Leah

 

We are safely back in Tennessee and trying to unravel from our tightly strung week in Cincinnati. We missed the pace that our rural Tennessee world provides. This week I couldn’t help but notice the high end people and polished areas that Ohio had to offer…and in the meantime my Tennessee friends were asking on Facebook if anyone had found their pot bellied pig “Piggles” who escaped from the house that morning (yes, pigs are inside pets here). Other friends were offering to bring their hounds to sniff the pig out. I missed the craziness and simplicity of this place.

 

Speaking of craziness, the bear has not been up to the house this week, although he has been hanging out in the woods next to the house and frequenting the road. As long as he stays away from the front door we are content!

Ahh I am avoiding starting the Cincinnati update. But I guess I just need to tackle it.

We went to Cincinnati with high hopes that this would be our final trip. Back in early May Levi had a throat scope in Chattanooga and the pulmonologist excitedly announced that Levi’s cords were moving completely normally! Jake and I were ecstatic with the news! This was the miracle we had been praying for. We started taking the steps needed to get him off his g-tube and he successfully passed a swallow study. I fully expected the Cincinnati doctors to share in our joy and do a happy dance with us as they discharged Levi from their caseload.

On Monday morning we met with pulmonology who seemed very pleased with Levi’s progress. He said it was unlikely he would even lavage (test the fluid in Levi’s lungs for food particles to see if he is aspirating) since clinically he looked so good. The appointment went great. He did notice some stridor on some videos we had filmed.

On Wednesday we met with the ENT surgeon who has been tackling Levi’s complicated case with us from the first hour we flew in to Cincinnati. We really love her. She asked if we could send a camera down in the office right then and there to see the vocal cord movement; that movement is best seen when they have zero anesthesia or sedation in their system, and even easier to spot when they are agitated. A nurse and I locked Levi in a bear hold as she sent the camera down his nose. He was obviously screaming and we could all hear a bit of his stridor (squeaky breathing/gasping for air).

She pulled the camera out and said disappointingly “I’m not seeing any movement at all. They are still both fully paralyzed.”

Jake had left the room as he can’t handle seeing those torturous bedside scopes, so I was rolling her words around in my mind trying to figure out what in the world was going on. She said that many doctors who don’t see many cases of bilateral vocal cord paralysis can often mistake arytenoid movement for vocal cord movement.

Levi’s trip to the operating room the next morning verified that his cords are still paralyzed. At this point his airway is a decent size, which is why he is breathing so well without oxygen but as he grows that gap will likely not grow with him; the gap is created by a piece of his rib in the back of the cords which will obviously not grow over time. If that happens we will have to do more surgeries to open it wider and wider, each time risking his ability to speak and/or eat or drink by mouth.

We went from envisioning a life with a little normalcy for Levi back to a life of more surgeries, restrictions, and question marks.

I am currently running the gamut of emotions. This weekend I have felt defeated and angry. And to be honest, I am allowing myself to dwell in those emotions right now.

Before we heard the disappointing news, we were driving down I-75 and we approached the city landscape of Cincinnati. I was thinking about the exciting conversations we were about to have with doctors. I suddenly realized that I hadn’t thanked God for our miracle in awhile so I prayed with such an intense gratitude. I thought to myself “Thank you God, we finally won one! We finally had a prayer answered with good news instead of heartbreak!”

And as I have mentioned hundreds of times before to you, unmet expectations and disappointment are two of my biggest stumbling blocks in life. They bring about a deep, dark anger in me that I have to fight hard to get rid of.

Logistically speaking, Levi’s diagnosis and future remains unchanged from the path we were following in April. But since his “great news” in May we had started planning a different life for Levi. Starting back on the old plan again is hard for me to do.

Levi is safe now with his oxygen levels but we will still need to watch him closely for changes and intervene when needed. In fact, after surgery we loaded everyone into the car to head to Tennessee and Levi’s oxygen saturation was too low so we had to go back on oxygen… a visible reminder of our defeat.

There is also a hidden sting that happens when we get bad news in appointments. Everywhere we go people ask “How did it go in Cincinnati?” and I have to verbalize the bad news over and over and over again.

The surgeons also mentioned that Levi has something called tracheomalacia (floppy trachea) and bronchomalacia (sticky lungs). They are very concerned that any respiratory sickness will put him in the ICU. They reminded us of the importance of keeping him as healthy as possible.

We will also be looking at removing his tonsils and adenoids in the near future to help open his airway a bit more. We signed off on the surgeon to put tubes in his ears if they were needed, since he is having so many recurring ear infections but the ears looked great so we are waiting.

Alright, pity party monologue over for now.

Time for some Malachi pictures too- they are harder to come by as we are often holding or supporting him and don’t have a free hand for a photo. I have some big Malachi thoughts these days, but I will save those for another entry.

We did get to do some fun things in Cincinnati in between appointments. The boys both really enjoyed the zoo, although Levi dwindled quickly from the heat.

One of Malachi’s favorite things to do when we go to the zoo is pick out a souvenir afterwards. He had been pretty intrigued with concept of the rhinos, so I found a stuffed one in the gift shop and asked him if he would like for that to be his toy. He signed YES and I told him we would look around and make sure there wasn’t something he liked better. We found a giant lizard with spikes down its back so I added that into the options. “Do you want the rhino?” NO “Do you want the lizard?” YES YES! I absolutely love how opinionated he is.

The gift shop questioning continued and finally he settled on an alligator that made growling noises. And he was one happy boy!

Both of the boys thoroughly enjoyed playing with family throughout the week. We were the audience for lots of plays and make believe and they always made sure to include Malachi.

My little sister has a claw machine so we used the opportunity (and key) for this photo op.

I also got to meet up with another Chattanooga mom two of our hospital days who is on a similar airway journey with her son. I was able to share a few things I wish I had known when we were transferred to Cincinnati. It is always refreshing to talk to other people who understand your lingo.

Since we have been home the boys have been getting reacquainted with all of their toys.

Ignore the unpacking mess in the background of all of our pictures! And the blue painters tape holding the air vents down…toddler life!

Here is a silly video of Levi singing karaoke:

And Levi apparently learned how to open cabinet doors while we were gone. Yay?

I saw a photo this week that struck my heart…

I saw myself in that mom, bloodied from all the attacks the devil has made on our family. I have a deep desire to preserve normalcy for each of my children, and I just feel like I am failing. Some of those darts are still getting past me.

This morning I did not want to go to church. I wanted to be in the presence of God and physically AT church but I didn’t want to barrage of questions I knew would be waiting on us. I didn’t want to speak the results because then they are more real.

As I was getting ready for church I put on a new necklace with a pendant that says “It is well with my soul”. As I looked in the mirror at myself I could see weary eyes holding back tears. I saw a defeated face looking back at me, and when my eye caught the words of that necklace I thought “It is NOT well with my soul. My soul is hurting, desperate to take away the trials these boys each face and unable to do so.”

I thought long and hard about whether I should take off the necklace since those words weren’t true for me. But I brushed the thought away, deciding that if I declared it maybe I could create the wellness in my dehydrated soul.

Then 5 minutes later the necklace literally broke off my neck. The chain itself broke in two. As it hit the floor I gasped, not quite sure whether to take the random moment as a God thing. But I feel in my heart that anything that happens can become a God thing if you look hard enough.

And here is the conclusion I came to: transparency and vulnerability is important to God.

He doesn’t want our forced grins and forced happy thoughts. He wants us in our weakness so that He can make us strong. It is the moments that our souls are unwell that give us an opportunity to cling to God and His goodness, desperate for a refreshing.

Tonight I looked up the words to the song “It is Well with My Soul”, written by Horatio Spafford in the late 1800s. The song was written after Horatio lost four of his daughters in a shipwreck in the Atlantic Ocean. He was on a ship several weeks later, passing the spot where the accident happened and the Holy Spirit laid these words on his heart.

When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say,
It is well, it is well with my soul.

Refrain:
It is well with my soul,
It is well, it is well with my soul.

Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ hath regarded my helpless estate,
And hath shed His own blood for my soul.

My sin—oh, the bliss of this glorious thought!—
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!

For me, be it Christ, be it Christ hence to live:
If Jordan above me shall roll,
No pang shall be mine, for in death as in life
Thou wilt whisper Thy peace to my soul.

But, Lord, ’tis for Thee, for Thy coming we wait,
The sky, not the grave, is our goal;
Oh, trump of the angel! Oh, voice of the Lord!
Blessed hope, blessed rest of my soul!

And Lord, haste the day when the faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.

There is so much beauty in this song, and when I read it even before knowing the history, I could hear the hurt in the authors words. But I also hear the hope he has in Christ.

I would be foolish to think that I am the only one this evening that has an unwell and hurting soul. We all have things that take away our peace. But my prayer is that, like the song says, God will whisper His peace to my soul.

I pray that God helps me process my disappointment and aching heart this week enough to sing the words “It is well with my soul”.

Thank you for continuing to pray for miracles for both of my boys.

Much love,

Leah