Oh Boy

This boy.

Levi has been surprising me this week in so many ways. He always wants to help with whatever care Malachi needs, which is something I encourage greatly. If he sees me check Malachi’s diaper to see if it needs to be changed he will scurry off and grab a fresh one and some wipes for me.

One morning this week I was prepping the formula bags and bottles for the day and Levi was watching me intently, looking for ways to help. I just casually said “Will you go get me one of Malachi’s extensions and a syringe for the top?” I said it jokingly, but off he went. I watched him get the stool from the bathroom, open the correct supply bin for an new extension and open the bag all by himself. He then went to the syringe drawer and opened a new bagged syringe, removed the stopper, and hooked it into the extension successfully for Malachi. He held it up with a proud smile on his face and I looked back with shock and admiration. What a precious little two year old helper.

Look at him go! Here is a video of his soccer dribbling.

Now for every sweet moment there is a rascal one of course. The biggest one from this week was when he removed his shorts, onesie, and diaper before I could catch him. In the diaper removal process some excrement fell out, unbeknownst to me. I chased him for a good bit, then finally caught him and took him to the bedroom to change. When we came out I was horrified to see that my shoe had tracked his poop all over the chase route. Oh boy.

Someone has been sneaking Oreos from the kitchen.

I have been working with Levi on color identification and took a short video to share with you all:

Malachi has been struggling with some seizures this weekend, and we are not quite sure what the trigger is. It could be the weather changing or something else. Regardless of how many seizures he has, he still continues to smile that famous Malachi grin that melts my heart into a puddle.

Malachi is changing into a big boy. I think he has mentally suffered the worst through this COVID phase at home. He craves engagement with others, and has really missed being social. We spend a lot of time outside listening to the nature noises, but he misses people. This week some of our dear friends came to sit with the boys so I could attend a soccer game. Leading up to them coming Malachi was wild eyed with excitement. It made his week!

It was during the wee hours of Friday morning that I woke up to Levi shouting my name from his bed. He does this every night, several times a night in fact but during the hours of 4a-6a Malachi wakes very easily. I jumped out of bed to run over to him and climb into his bed, something that successfully quiets him down. But as I sprinted across the dark room like a ninja he laid down again and drifted off quickly to sleep.

So there I was, standing in the middle of the bedroom looking at both of my sons sleeping peacefully. Malachi looked so small in the big queen sized bed and I knew there was plenty of room for me to sneak back up there with him, but doing so meant risking him waking up. Levi looked so big in his twin bed and I spotted a sliver of mattress I could lay sideways on, but that seemed like a risky move too.

As I weighed my options my eyes grew tired and I decided the safest and fastest route back to sleep would be sleeping on the floor. I couldn’t grab my pillow without waking Malachi, as I use my pillow to support his and keep him from smothering himself. So I did what any sleep deprived mother would do and grabbed a stuffed teddy bear out of Levi’s bed and the bath towel I keep at the foot of the bed to catch surprise nighttime vomits (don’t worry, it was clean).

As I curled up on the floor I couldn’t help but laugh, thinking to myself “This is definitely not the life I imagined I would have.” My husband sleeping soundly in our king sized bed alone, my medically complex kids hooked to machines, and me sleeping on the floor with a vomit towel for a blanket.

Life can be full of surprises.

There are weeks the surprises of this life make me giggle. There are times when they make me roll my eyes. But lately there are times that they make me angry. I have been so frustrated this week by the things beyond my control. I crave easier motherhood, but that is a desire that will never be satiated. In my head I need to accept this, but my heart just doesn’t want to.

Last night I had a anger burst. Long story short, the kids and I were up until 4:45am. It was a series of unfortunate events full of seizures from one and toddler mania from the other. By the end of it we were all three crying and I was just plain mad.

I scrolled through Facebook to try to distract my brain from the reality of what was happening and saw post after post of typical mothers with typical problems. The more I scrolled the more my frustration grew. I remember seeing this photo a few years ago and the phrase has stuck with me since.

I am not disillusioned, I am fully aware that my anger stems from my grief. Grief typically grows from a difficult day, hour, moment. But living life with medically complex kids means living in potential grief every hour of every day. It is not sparked by a memory that simply creeps in every now and then; it is sparked by a very difficult every day life and the reality that it isn’t a rough stage we will likely ever grow out of.

But let’s be honest here…anger is in no shape or form something that reflects God. There is nothing about our anger that glorifies Him, points others towards Him, or makes Him smile.

James 1:19-20 “My dear brothers and sisters, take note of this: Everyone should be quick to listen, slow to speak and slow to become angry, because human anger does not produce the righteousness that God desires.”

I can sit here and try to justify my frustration to you all, but I know that each angry outburst is a moment when I have invited darkness to overwhelm my heart.

So how do I slow down this grief? How do I get rid of my anger? I am working on figuring that out. But for now, I can stop comparing my life to this hypothetical book of what parenting looks like that my mind has created.

When God wrote my story, He knew there would be nights on the floor with a vomit towel for a blanket. And He knew there would be a whole chapter devoted to sanitizing poop smeared floors.

Each of us have been written a unique story. So I am going to try to focus hard this week on the blank pages He is slowly illustrating for me. And I will be working on not getting disappointed when the image on the page doesn’t match what I thought would be there.

Romans 5:3-5 Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

Much love,

Leah

Mountain Goats

To be truthful, Jake and I are wiped out. School has been kicking his tail with all the additional things he is having to do for the remote learners in his classes as it is hard to teach math remotely. He is discouraged, frustrated, and continually falling behind so I am trying hard to offer loads of grace and understanding. And lots of home cooked meals!

But in reality, I am wiped out as well. I shouldn’t be…my workload is lighter than it has ever been, and our appointment calendar is thin. But the monotony of our schedule paired with being a medical mama is wearing me down. The boys aren’t sleeping well so I jump back and forth from bed to bed most of the night, trying to keep everyone quiet, calm, and safely hooked up to their machines. On a typical night (Malachi’s “nights” are 6 hours long) I am up and down at least a dozen times.

There were so many times this week that I packed up the boys and went for a drive, just hoping to keep toddler Levi strapped into a seat and still for ten minutes. I love him with all of my heart, but now officially understand the phrase “toddler tornado”!

I have been working hard to plump up Levi for his upcoming GI appointment. We are lectured continually about his weight but at the rate he moves he burns a whole lot of calories. I am finally seeing a change and he has gained two pounds in three weeks. I have been trying to run his feeds longer at night to add in some extra calories and try to keep him on his feed every 2.5 hours here at the house. He was fighting me about putting on his feeding backpack so we ordered two more and now he gets to pick which one he uses for the day. The new Toy Story one seems to be his top pick. We have a connection with a lady that modifies preschool backpacks for us so he can get some cool prints instead of medical looking ones.

Malachi is gaining weight with ease! He is up to 37 pounds and looks very healthy. He isn’t moving as much as he did pre-quarantine and I have been growing more and more concerned about his tone. I called his physical therapist and talked to her about some options for getting him seen at least a few times a month. She told me she drives out our way twice a month and would be willing to come by the house to do a session with Malachi! She came out Friday and confirmed that yes, Malachi has lost a lot of muscle tone since she saw him last.

On the flip side she was pleasantly surprised with how well Levi is doing!

I have been working this week on trying to get him another seating option that will encourage Malachi to engage his muscles and hold his head up. Seating for special needs kids runs between $3,000-$8,000 and insurance doesn’t cover comfy/non-essential seating. I have had my eye on a specific chair for him for a few years and I reached out to the company this week to see if they had any floor models in Malachi’s size that they would sell me at a discounted rate. To my surprise he wrote me back this week to let me know they had one they could ship out next week for $750 (includes shipping and taxes)! This same chair is over $3,000 new so I am thrilled.

We were approved for a local grant this year, the same grant that helped cover the pool last year. That extra allowance is helpful for purchases like these, and I will be working with them to see if they will help with the cost of the new chair.

I also spent a few hours on the phone this week filing our final appeal for Levi’s Cincinnati surgery. They have 90 days to respond, so say some prayers with us that they will reverse their decision and cover it.

This week I stretched past my comfort zone and took the boys to two soccer games. I kept them away from the stands and people, and it was the break we all needed. Malachi giggled and squealed with joy, so happy to be doing something normal. Levi cried 90% of the time yelling that he wanted to go home haha. He didn’t like the crowd and all the noise around him. Thankfully his buddy Tanner was there to act as his safety blanket.

We did a whole lot of outside playing and swimming this week. Both boys love to be outside and now that we have some great spaces to sit and enjoy shade they are always ready to go out there. I haven’t been as concerned about bears during the daytime, as the earliest we have seen them is 3:00. But yesterday at noon I pulled out of the driveway and scared one out of our yard. He crossed the street in front of the house and jumped into the treeline. I have seen dozens and dozens of bears but for some reason they still take my breath away when I see them. They are just so big! It’s like my brain can’t process how something that big and furry can move with such agility.

I have been trying to work with Levi on his colors, and he has been cracking me up. Definitely a work in progress. I took a video this week for you so you could see his silliness:

Levi has a birthday coming up in November and I found a company that writes books using your kids as the main characters. You design what each character will look like and choose the story topics. I worked to make one for the boys, as they both love hearing me make up stories about them at night. I don’t have the finished product yet but the sweet cover made me cry.

Special needs parenting is just so complex. There is so much grief, but you have to mask that even in your own home. I never want Levi to see me grieve over Malachi’s differences. I want him to see Malachi for the beautifully unique creation that he is. And I absolutely NEVER want Malachi to know that his challenges sometimes break my heart for him. I have to create a world where the challenges we face are seen as normal.

Seeing this cartoon made a lump creep up in my throat as it represented the life I imagined I would have…two healthy brothers climbing trees, scraping knees, and loving adventures together. My heart hurt for Malachi, knowing that he can’t get his body to do the things his mind wants him to do. My heart hurt for Levi, knowing the instant responsibility he has thrust on him to help his brother. I truly don’t think Levi will ever see it as a burden, but the loss of his normalcy in that hurts my mommy heart. It is an extra push for me as a mother to teach Levi about the unconditional love of Jesus, and how we show that love to others when we serve them.

Oh, the depths of special needs parenting are so thick.

But when I look at them together I see the bond of two brothers who love one another with all of their hearts. I think I am prematurely mourning over something that neither of them will ever mourn.

This book will be a special one for us all as it allows each of us to use our imaginations.

And on a totally different note, I saw a photo this week and I don’t know that I have ever related to an animal more in my life.

Take a look at these mountain goats..

When I saw these images I thought to myself, “THAT is a perfect image of special needs parenting!”

Facing mountains that look impossible to climb. But those steep, vertical walls are the ones we must scale in order to give our kids the most full, rich lives we can. Just like these silly mountain goats we search for a single ledge to put just one foot, and step by step we work our way dangerously up the mountain.

The Bible talks a lot about mountains, and the visual pictures each verse paints is powerful. When I was young in my faith I clung to the verse about faith moving mountains. What a powerful thing!

But as I walked deeper with the Lord and he revealed this different plan He had for my life, I started to understand that some mountains are not meant to be moved. They are meant to be scaled perilously, step by step…not knowing where the next foothold may be, but trusting that God will guide your foot to it.

Psalm 121:1-2 “I lift my eyes to the mountains- where does my help come from? My help comes from the Lord, the Maker of heaven and earth.”

Time and time again we will each encounter mountains. My mountain will likely look very different than your mountain but the daunting nature of those mountains will be very similar.

You may be like me, and try to “pray away the mountain”, closing your eyes hard and mustering all of your faith to command the mountain to move. But when you open your eyes the mountain still stands, sometimes growing larger each time you look at it.

Sometimes we are called to climb. Because it is in the climb that our faith gets the chance to mature and grow. Trusting God sounds simple, but when you rely on Him as you scale the mountain, you start to truly understand the importance of a God with an aerial view.

Who knew a photo of mountain goats would be such a spiritual encouragement for me this week!

Please continue to pray over the health of our family, and pray that some of the wackiness gets ironed out this week for Jake.

Much love,

Leah

Looking for Lovely

This handsome seven year old lost another tooth this week. I was brushing his teeth and out it popped! I think Levi was more excited to share the news with daddy than Malachi was.

Look how long those legs are getting! We are cautious about telling Malachi about imaginary things like the tooth fairy and santa; we don’t want to plant a seed that some of what mommy and daddy tell him isn’t true. But we do tell him that some kids believe in a fairy that takes their teeth and leaves presents, and we let him pretend too. We put the tooth under his pillow and the next day he gets a special treat from mommy and daddy, usually a chocolate bar.

Levi and mommy returned from Cincinnati with minor head colds. I tried desperately to keep Malachi from catching anything but grew discouraged when I watched in horror as Levi wiped his snotty nose on Malachi’s hair. Thankfully neither Jake or Malachi caught it and we were healthy again by the middle of the week.

Levi does not handle any congestion well with his airway, and this go around was not an exception. He had a very difficult time sleeping which trickled down to Malachi and I also having a difficult time sleeping. I ended up dragging our giant bean bag into the living room so I could separate the boys from one another and keep everyone close.

We tucked in for the week, going on drives periodically to give the boys some adventure. We also spent a lot of time outside enjoying the cooler fall-like days. Malachi loves to listen to the sounds of nature.

We did spot a single bear print on the edge of the pool cover this week. We are really hoping they will leave it alone!

I have been so relieved to have our Cincinnati trip behind us. Right now we don’t have any surgeries on the horizon until next summer and I feel like a weight has been lifted. I have started tackling some big phone calls and paperwork packets I have been putting off.

One of the big projects is filing an appeal with our secondary insurance for Levi’s surgery. They sent us a letter telling us that Vanderbilt could do the surgery and there was no reason for us to go out of network to Cincinnati, therefore they would not be paying any of the bills. Clearly taking him to surgeons who did not complete the original experimental surgery is not an option, but we are hitting brick walls with insurance even after getting the surgeons to call and explain the situation. I will keep filing, but it looks like we may lose this battle; and unfortunately this will set a precedent for each additional Cincinnati surgery trip that will be required in Levi’s lifetime.

We did get approval this week for Malachi’s homeschooling, so I will start trying to find the right pieces of equipment and curriculum to get him rolling here at the house. Taking on his schooling will be a big endeavor so I am no longer going to be able to handle working office hours part time as the church secretary. But maybe one day when things settle back down I can jump back into that role, as it has been a good mental distraction for me from all things medical.

Levi has not enjoyed being cooped up this week and has been getting into all sorts of mischief. He has been pestering the fire out of Malachi, and one day this week he accidentally hit Malachi with a toy. Malachi was livid, and stayed mad at him for about 4 hours. Seeing his anger made me smile, as weird as that sounds.

Levi tried to make up for it, bringing Malachi stacks and stacks of toys to try to cheer him up. He genuinely felt bad and confessed the whole story again, with reenactments, when Jake got home.

He has also decided that Malachi should be fed the same snacks he gets and has been “sharing” his snacks with him. Malachi can’t chew and choked on food, so eating most foods is very dangerous for him. Today I jumped in the shower and Levi popped his head in and told me that he put shredded cheese in Malachi’s mouth. Twice this week I caught him shoving tortilla chips into Malachi’s closed mouth, and once I caught him pouring water from his cup into Malachi’s mouth. Each time I race over to find a wild eyed Malachi trying to process what to do with the foreign objects in his mouth. Poor big brother!

Levi has been wearing a thick winter Carhart coat and this silly hat around the house just for fun.

He then decided that Malachi also needed a hat and dug this one out of a kitchen cabinet. Malachi thought it was hilarious that he had a bowl on his head and was cracking us all up with his funny faces.

Both Malachi and Levi have such big imaginations! Malachi acts out the scenes from the movies he watches, yelling when the characters yell and even crying when they cry. Levi has started making up stories about all kinds of things. This week he told us that the dog down the road bit him in his arm and that a bear also bit him and then ran into the woods. He can spin quite a tale.

Jake and his amazing friends spent another Saturday working on the therapy pool area for Malachi. I have been blown away by how kind the people in our community are, and several of them have given up entire Saturdays to help make our vision a reality. We would have never been able to afford outsourcing a project like this one.

Tonight we had our weekly youth Bible study out there and having the extra space to spread the teens out was a blessing. We still have a few more Saturdays of work left to finish the electric and small touches, but I am so thrilled with how functional it is for Malachi to swim in all weather settings.

We added a slide off the back and Levi boldly went down it all by himself this weekend. Malachi also rode down it with mommy and daddy, squealing with joy the whole ride down.

One of the most challenging things about being a youth pastor is trying to figure out which direction God wants us to take the group next. Sometimes the topics and themes I personally want to do are just not the right fit for where the teens are spiritually. We have been praying about what direction to take the group and listening for God’s prompting.

On Sunday nights we split them up and the girls do a Bible study with me. We are kicking off a new study called “Looking for the Lovely” and the topic strikes such a nerve in my heart.

If you have read the blog long I am sure you already know that Philippians 4:8 has become my life verse. I have it plastered on our living room wall, and recite it over and over again in my mind most days.

“Whatsoever things are true, noble, right, pure, lovely, admirable, praiseworthy, excellent, think on these things.”

This verse used to be an easy one to incorporate into our lives before Malachi was born. It is easy to focus on the lovely when you are immersed in the lovely.

It wasn’t until challenges hit that I truly understood how radical living this verse out could be. There are days when I can’t find the lovely. I can’t find the praiseworthy things, or the excellent things. My mind searches for them but can only find hard, and discouraging things to focus on.

I am in a world that I have very little control of, but the one thing I can continually attempt to control with some success is my thoughts. The Bible tells us to take every thought captive and not let our minds wander too far from where we need them to be.

Although looking for the lovely can be challenging, I see the importance and benefits of the hunt. When you train your eyes to see through darkness looking for glimmers of light, you don’t have time to focus on the overwhelming nature of the darkness.

Looking for the lovely can be a wonderful distraction and keep us from settling in that darkness where fears have a chance to grow beyond recognition.

I don’t know what darkness you may be facing, but I want to encourage you to search high and low for those flickers of lovely in your situation. They are there- God always leaves evidence of his goodness and grace for us to find. Maybe you can collect enough of them in a jar and use them to help you get to the other side of the darkness.

May God bless you this week,

Leah

The Unseen

Today I want to cut right to our surgery updates while they are fresh on my mind.

 

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In order to do so, here are a few big background pieces you need to know:

-Levi was born with bilateral vocal cord paralysis, which means both vocal cords are paralyzed partially open. In his case they were paralyzed very close together and he wasn’t able to breathe when he was born.

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-The current treatment for this condition is to put in a trach and hope that the cords start moving by the age of five, a 50% chance. This was the only option presented to us at birth, and I was devastated.

-We found a few hospitals across the nation that were trying experimental surgeries (had done 4 total surgeries at one and 19 at another) for Levi’s condition and two were willing and eager to try some things on Levi to avoid the trach. After much prayer we transferred him via air ambulance to Cincinnati.

 

-Much to our disappointment, Levi failed the first experimental surgery…then the second…then the third. After 4 months of trying surgery after surgery I had my pen ready to sign off on the trach. I asked to speak to the head surgeon one final time and he came up to Levi’s NICU room. I remember asking him “I need you to verbally tell me there is NOTHING else we can try.” I will never forget the look on his face when he said “Well, there is one more thing we can attempt but it is a very difficult surgery involving four surgeons. We have only done it on one other baby and he was much larger than Levi, but I am willing to try it.”

-Within the week Levi had a single stage laryngotracheal reconstruction where they placed a piece of his rib in his airway to help prop it open. It was successful and we were able to avoid the trach! One of the biggest fears the surgeons have had is that the airway wouldn’t continue to grow with him and in a few years our solution would not be enough and the trach would still be needed.

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-From a parent standpoint we really took a gamble in assuming that Levi’s cords would not wake up by age 5 and treated this as a lifelong condition that needed a permanent solution rather than a temporary one. Levi is nearly three, so as of now we guessed correctly. His cords are still fully paralyzed.

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We are on an annual checkup basis with the team in Cincinnati, and this was the week. Jake and I were both confident that his vocal cords had not awakened; we can still hear some squeaking when he is active and when he is sleeping which tells us they are pretty close together. But most of the time when we take him for these appointments there is some sort of trimming or stretching that needs to happen in the operating room. We sign off on all the possible interventions and wait and see what they end up doing.

We met with his surgeons leading up to surgery day and they were all very encouraged by the clinical signs they were seeing with Levi (what you can see/hear when you are around him and what his oxygen numbers are doing when awake).

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When I met with them post-op they shared with me that he looks GREAT from an airway perspective. He has some floppiness in his trachea (tracheomalacia) and lungs (bronchomalacia) that looks stronger than last year. But the biggest news is that his airway IS growing proportionately with him! That was one of the biggest fears and unknowns that would lead us back to a trach conversation. His airway is naturally widening beautifully.

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I asked if it looked like he would lose the ability to speak based on how wide it is getting and they said at this rate that we can expect him to continue to have a voice. I also asked if this would increase his chances for aspiration since the opening is wider leading to his lungs and they said that it looks like Levi is learning how to direct food and liquids down the right path for now.

We talked about Levi’s airway for several minutes, and their excitement was noticeably contagious. We have dealt with a lot of surgeons over the years, and I have never been able to see legitimate excitement on the faces of the people in the room. She shared with me how they had talked about Levi in the operating room and how severe his case was at birth. She turned to me and said “Levi has really defied the odds that WE even had for him. We were talking about how bad his condition was 2.5 years ago, and even we didn’t think we would send him home without a trach. But to see this work for him so beautifully has given us so much encouragement and hope.” She then explained that because of his success, they are starting to do this surgery on more and more babies with this condition to avoid the trach. I left that small conference room fully believing that they were as happy as I was with the day’s report.

Since this was and is still an experimental case we will continue to be followed likely for Levi’s lifetime. It doesn’t mean that the issue is “checked off the list” and we could be facing more minor interventions in the future on his airway but it seems we have crossed the threshold into “safe” enough to not even mention the trach anymore. The surgeons aren’t quite sure yet how much physical activity his condition will allow, but those things are minor and nothing to fret over right now. As of now, we will continue to go back each year for another look to make sure things are continuing to progress.

As far as the trip itself, traveling went well and I stayed awake by listening to some old movies on the portable DVD player. Sound of Music, Seven Brides for Seven Brothers, Cool Hand Luke. I kept a stash of toys in the passengers seat and tossed one to Levi every time he started to fuss.

We stayed with my dad who lives about 45 minutes north of the hospital. Levi had so much fun playing with my younger siblings and visiting with family. But sleeping in a new place really threw him for a loop and he stayed up most of the night prior to surgery.

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The morning of surgery was a rough one with a Covid test for Levi. He was VERY VERY upset by the intrusion and still talks about the whole incident. The test came back negative and we waiting for another hour or so before surgery time.

Levi’s main surgeon came in and asked the same question she asks every time we see her: “Have you gotten a swimming pool yet?” And this year I beamed and shared with her that YES we have. In a very tearful medical conference with Levi’s team two years ago I shared with them my vision that both boys would be able to swim together one day. Trached children are at a huge risk when swimming or bathing and swimming is literally the only thing that Malachi can do independently. I remember mourning over those brotherly moments for them as we were close to losing that dream.

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My family bought Levi a baby doll this week and it proved to be a lifesaver for him. He was so distracted by taking care of the baby that he didn’t get too restless. And the nurses were able to do each of the necessary steps to the baby doll before doing it on Levi, which helped him.

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I had talked to Levi about what was going to happen when it was time to go to the operating room, so when they came in to get him he clung to me tightly and started crying. They had to pry him off and take him out screaming, which was so hard for my mommy heart. But I had to pretend for his sake that it was a completely normal thing to do and that I wasn’t worried.

It took them 5 pokes to get an IV this time around, and he had already awakened by the time I was called back to the recovery room. I never need directions to Levi in the recovery area, I just follow the squeaking! Once he got back into my arms he calmed pretty quickly and did not require any post-op oxygen. Shockingly after not sleeping the night before, he didn’t rest again until 9:30 that night. That is opposite of how he usually is, and this momma was too worn out to consider making the drive back to Tennessee that same day.

Surgery days are a whole myriad of emotions for me. There is the constant nagging of worry and fear, but I have to stifle those emotions and put on a brave face for the kids. They need to feel my confidence. My appetite disappears for days leading up to surgery and I have a hard time sleeping. The combo of it all is so physically and mentally taxing, and when it ends it is such a rush of so much relief.

This sounds a little crazy, but even Jake and I don’t talk much on surgery days. We are usually separated for them, as he cares for whichever child is not having surgery. I have a hard time talking about the things that are happening, and he has a hard time hearing them. So I text him when he is being taken back and again when I am done talking with the surgeons, but other than that we shut down for several hours on surgery days. It is best for both of us! Jake’s personality commits to the “ignorance is bliss” mantra…honestly you all know more about the actual day than he does haha!

I save my breakdown for when that first moment of solitude when we arrive home after a surgery trip. Jake takes both boys and I spend time crying in the shower and letting all the built up emotions go. Yesterday as I let the water fall over me I found myself crying out to God, “I’m so tired of fighting. How much longer do I have to keep fighting?”

Okay, now back to surgery day.

As I sat in that waiting room all of the memories flooded back to the many times I stared at those same windows and walls. I thought about the many emotions I had experienced in this same room…anxiousness, excitement, fear…but this time I just felt indifferent to the situation. And then I hated that I had become so calloused and indifferent to surgeries. I never imagined a life where major things would feel so minor. I was obviously worried about how Levi was handling things, but knew he was in good hands.

But then my mind wandered towards what could have been. I started to allow my imagination to process what this day would have looked like had we put a trach in Levi at birth. His cords haven’t started working yet, so we would still be in this same seat, staring at these same walls, but I would have been wracked with hope that THIS would be the time his vocal cords would be seen moving. Hope that THIS would be the day we got our miracle.

And while we haven’t gotten our miracle, God has led our family to the next best thing, and taken us on a healing journey. So maybe we did get our miracle? Who exactly decides which things are truly miraculous? Maybe our definition of miracle and God’s don’t match up the way we think.

As I sat in that chair I could visually see a tense, worried version of myself sitting there…a momma who was about to hear news that her son’s trach wasn’t ready to come out yet. That he would live at least another year with limitations, home healthcare, and disappointments. My heart felt her pain.

And then as I looked in the reflection of myself in the window I realized how truly blessed I am by God to be sitting in the waiting room expecting to hear that nothing has changed…and that report being good news.

Perspectives are astounding things. They can literally revolutionize a situation and breathe life back into it.

2 Corinthians 4: 16-18 “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an external glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”

This week I got a glimpse of the “renewing” that the verse talks about. It is a process that sometimes we don’t get to witness, but nevertheless God renews us day by day.

Today I am thankful for the things that remain unseen. I am thankful that God’s plan for my family is so beautifully unseen.

And I pray that I can continue to find contentment living in the unseen. Without the glimpses of unseen moments that sneak into our lives, we don’t get the chance to really appreciate the seen.

I never imagined I would emerge from a hard surgery week singing the praises of our God so loudly. Yet here we are.

Thank you for your prayers this week, and all the many ways you lift up our family behind the scenes.

Leah

 

Mourning

We had another week of survival mode in the Carroll house, desperately hoping each night would yield more sleep than the previous one! I *think* we are getting closer to finding that routine we so intensely need and I am praying our Cincinnati trip won’t mess with the flow.

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Malachi has been struggling with tummy aches that lead to some pretty awful seizures. One night this week his seizures kept him awake until 5am, then Levi woke up for the day at 7:30. I think the biggest battle for me is mentally dealing with the unmet expectation of sleep. Thankfully today was a slower day for us and we took turns getting a nap in!

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Malachi’s seizures have caused his little brain to go haywire and his body temperatures have been up and down. His forehead will feel perfectly normal but his back will heat up to over 100 degrees. It is definitely a brain issue rather than a sickness issue but it requires some creativity on keeping the hot spots on his body cooled down.

We have been spending a lot of time in the playroom- in the pictures below you can see Levi pretending to shave Malachi’s face. It made me smile to see him want to take care of brother, and it also made me consider how this will likely be a reality for the boys in the future. I hope that little Levi’s desire to help care for Malachi always stays this strong!

Sunday night Bible studies in our driveway have been working wonderfully. Thanks to some helpful friends we are able to keep the boys away from the crowd, and all bathroom trips are in and out through the basement.

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This weekend Jake and some of our amazing friends tackled the therapy pool pavilion again and made so much progress! We are so incredibly blessed to have such a support system in our lives to help make our goals for Malachi a reality.

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This weekend we have spent hours out there. Now that the sunshine issue has been taken care of, Malachi is extremely comfortable. Tonight we sat out there with our toes in the water and watched the sunset.

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Last night my brother and his family came out for a night of swimming and smores, and watching Malachi swim with his cousins was so special to me. He was so proud to be swimming all by himself with the big kids. He also really liked sitting by the fire.

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Inclusion is so important to Jake and I, and being in a home that provides those opportunities for Malachi to be included in everything is a dream come true. We are so blessed beyond what we deserve.

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Levi has been in full on mischief maker mode. His energy never seems to end and his curiosity is increasing each day.

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I have felt anxiety creep in this week as I mentally start to prepare for our Cincinnati trip on Thursday. I keep flashing back to the lobby of the hospital, and the exact place I was sitting the night we arrived. It was around 3am and I had gone down to the lobby briefly to meet my dad. While we were talking my phone rang and it was the NICU doctor telling me that Levi had just coded and they were bagging him. I jumped on the elevator and raced back into the unit to find Levi’s lifeless body rising up and down with each puff of air the doctor manually put into him.

There are certain scenes my mind will never forget, and unfortunately Cincinnati Children’s Hospital was the backdrop for many of them. Anytime I enter that hospital my heart sinks as the memories flood back. This will be the 27th time I have sat in the OR waiting area, anxiously awaiting the call from his surgeon to tell me they are done and he is stable.

I will start the pre-surgery routine this week…clip my fingernails off so I can’t chew them, wear dark colors in case he ends up with post op bleeding, delay drinking liquids that morning so I don’t go into the bathroom and miss them calling my name over the loudspeaker.

One of the highest anxiety times is the moments after the surgery when I am shuttled into a small room and wait for them to come in and report the outcome. With his airway issues we never know what they are going to have to do before he enters the OR so I am always eager to find out what they ended up cutting, stretching, and fixing so I can know what recovery will look like. And then as soon as they are done talking my anxiety mode switches to getting back to the recovery area to lay my eyes on my son. Almost every time I can find him with my eyes closed just by following the post-op squeak he often has…it is one of a kind.

This week Facebook memories brought up this photo from 5 years ago.

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What a precious little lamb! Up until this point Jake and I had done a pretty decent job of holding tightly to our hope for Malachi to typically develop. But at two years old Malachi still wasn’t able to sit independently and medical professionals started to talk about assistive devices and wheelchairs. They were so kind with their words, recognizing that our hearts weren’t ready for a reality check.

We borrowed this wheelchair for a few weeks to try it out and this was his first time in the chair. As I studied this photo this week it reminded me of the emotional journey we have been on as we try to process life with special needs children. It is a complex journey that is filled with so much joy, sorrow, and unique perspectives. I wrote a small post with this photo on my Facebook page and thought I would share it here as well.

The grief of a special needs mother is so unique and hard to explain. We grieved the moment we were told that our children’s lives would be filled with challenges, but our grief is ever-evolving… a grief that never truly ends.
The first seizure, the first wheelchair, the first tears from Malachi over being excluded, the first (and twentieth and fortieth…) surgery, the missed milestones other parents get to celebrate. The grief is continual, and hits at unexpected times.
I remember taking this picture 5 years ago and being hit with a wave of grief. I had to mask it because Malachi was so excited to be sitting up by himself, so I choked back my tears as I recognized this would be the first of many wheelchairs in our lifetime.
But that sweet Malachi smile snapped me out of it. My moment of mourning was his moment of pride- What selfish creatures we can be to only focus on our unmet expectations and not see the beautiful moments hidden within.
Grief can choke you if you let it. I have to remind myself several times a day to focus on praiseworthy things. We allow ourselves a moment to mourn, then we search hard for the praiseworthy. And often times the best teacher for me is my seven-year-old nonverbal son. What a rare and beautiful gift we’ve been given.

Tonight as I mentally prepare for this week’s medical trip I find myself wanting to mourn again over our loss of normal. But as we read in Matthew 5:

Blessed are those who mourn, for they shall be comforted.

I believe with all my heart that God didn’t design us to sit in a state of mourning for very long. We can mourn over our sin, we can mourn over death, we can mourn over disappointment. But it is during those moments of brokenness that we must soften our hearts enough to receive the comfort God is eager to give.

God didn’t design us to dwell in the brokenness. But brokenness can be a catalyst for our hearts to call out to Him.

Clearly I am still struggling immensely with moments of grief and brokenness as a mother. But I am so grateful that time and time again God receives me with open, comforting arms. Mourning in of itself isn’t a bad thing, but finding a comfortable home within it instead of desiring to run to God can be.

I apologize for the splotchy blog entries lately- I am usually trying to get the boys calmed down for bed as I type them so there is no telling what the final outcome will be. Please cover our family in prayer this week; specifically for these things:

-safety for Levi and I as we travel

-health and sleep for Jake and Malachi as they stay in Tennessee

-comfort for Levi’s medical PTSD

-minimally invasive surgery needed…and no surprises!

-a report that his vocal cords are moving (our miracle)

-wisdom for doctors and Jake and I to know what to do next

I am praying that next week’s blog will be full of wonderful reports and praises!

Much love,

Leah

Called Out

This week we made the trip down to Chattanooga for appointments in the cerebral palsy clinic. The boys share several specialists, and thankfully this was one of those doubled up days.

 

 

The hospital building the specialists are in was eerily empty, which I was thrilled with. They did temperature checks on the way in and only spent two minutes in the waiting area before we were taken back to a room. Everyone was masked up and extra cautious.

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The CP clinic measures each of the boys spasticity so we can watch and intervene as needed. They also help with orders for equipment and new orthotics for the boys. When and if Malachi ever needs botox injections in his tight muscles they would handle setting up those procedures as well. Botox works very well for children with specified areas of tightness but Malachi’s is all over so it makes him a poor candidate.

Levi has hypotonic CP (low tone) so he is very bendy and floppy. They were very surprised at how well he was walking and running since he runs on the inside of his feet.

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Malachi has hypertonic CP (high tone) in his lower extremities and hypotonic CP in his core so he is classified as mixed CP. While they were checking his range of motion they pushed a little too hard on his very tight knee and he signed no, but they didn’t recognize the sign and continued to push him. As soon as I saw his no face I told her to stop but it was too late and he burst into tears. It took a bit for us to calm him back down, and he was very distrustful of her for the remainder of the appointment.

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The boys have been running me ragged this week. I was hoping to have found a groove by now with their sleep schedule but somehow we are more wonky than before. The night before our CP appointment Levi stayed up until 4am and Malachi woke up at 7.

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Last Sunday night I hit “post” on the blog entry and found that Levi had opened the Clorox wipes and put one in his mouth. I jumped up and snatched it before he could run and on my way down my finger caught his tummy tube and plucked it right out. OOPS! I was able to get a new one in quickly but emotions ran high for both he and I throughout the process so we stayed up until the early morning hours.

They love snuggling together at bedtime. Once I get Levi asleep I can transition him into his bed, and this week he has done better about staying in it most of the night. And Malachi and I have been working on our ninja skills to sneak out of the room when Malachi wakes up each morning.

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Our evenings have been packed full of events. We are still keeping the boys tucked in away from crowds as much as we can, so we figured hosting things in the driveway was the easiest way to manage our kids and our extra-curricular things. We open the basement door up so there is access to a bathroom and keep the teens in the driveway/hot tub area.

On Tuesday we hosted a movie, hot tub, and pizza/smores night for the girl’s soccer team. Jake stayed in the house with our boys and I spent time with the girls outside from a distance.

 

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Friday night we set up the giant movie screen at the church and held a community drive-in theater for an outreach event. My mom sat with the boys at the house so Jake and I could both be involved. We prayed over each family that came out and served dinner and snacks. This was our first trial run and we had over 50 cars come out (for our small town that is a lot)! We also sent home a family Bible study with each car to try to get them to plug into God’s word.

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Tonight we had the youth group come out to our house for driveway Bible study. We are trying to find safe ways to continue our ministries and tonight went wonderfully. We had about 35 teens show up and we were able to keep everyone relatively spread out in our front yard area. These plans may have to change if the virus continues to spread in our small town.

Jake is taking extra precautions, which means he showers three times each day (after any encounter in public) and goes through four outfits. My laundry has quadrupled this week!

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As we prepare for Levi’s Cincinnati surgery in two weeks, I am forced back into special needs land. Sometimes I can convince myself that our life is not that different than everyone else’s; and while I know that it is a lie, my heart let’s me fully believe it.

Thinking through logistics of traveling for surgery is complicated. Not to mention thinking through the things needed for Jake to succeed alone with Malachi in Tennessee while we Levi and I are gone. They will need to keep the van for the wheelchair , which means I will need to make sure our other car is safe enough to make the trip. I will have to dig out oxygen tanks and regulators again, as he needed those post op for a few hours last surgery.

The hidden side of special needs parenting that you probably don’t have a reason to know about is the massive amounts of insurance paperwork we deal with. For example, we got a letter in the mail this week from insurance saying that Levi’s upcoming surgery would not be covered by his secondary insurance. They said that there is someone in network at Vanderbilt that could do the surgery and traveling to Cincinnati was unnecessary and therefore not covered. I will work on the appeal this week to try to help them understand the experimental nature of his initial procedure and how important it is to be followed by the same specialists that performed it.

Total side note, here is a photo of this week’s progress on the therapy pool. We are getting closer and closer to our roof!

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In all honesty, I am burned out right now. We are back to so many plates swirling in the air and paired with a lack of sleep, my days all merge into one incredibly long one. We find ourselves frequently evaluating if there is something God is calling us to get rid of.

I know He has a plan in all of it, but boy am I exhausted! The easiest one our minds constantly ask God about eliminating is our role as soccer coaches. Since we aren’t able to talk directly about God with the girls, there is more of a challenge in that role to make an impact for the kingdom of God. Not to mention how time consuming it is year round. But every time we ask God, he is very clear that we are to continue…8 years later here we still are.

This week we invited the middle school soccer team to come and practice with the high school team. We thought it would be a good opportunity for our high school girls to teach some younger players. We ended up with 44 players on the field and had a great practice. At the end we circled all the players up (6 feet apart of course) and asked the girls if anyone had a “call out”, something we do at the end of every practice or game. We give the girls an opportunity to compliment a teammate on something they did that caught their eye. We do this for several reasons, but the main one is that we are trying to teach the girls how to build up instead of tear down. The way of the world is to compare and tear down, but the way of Christ is to speak life into situations and people.

Immediately the hands of the high schoolers shot up all over our circle. We watched as high school players spoke life into the middle school players. Watching their innocent little faces light up as each one received a compliment literally brought Jake to tears. Those compliments are words those young ladies will never forget.

Sometimes we are called to things that don’t make sense, like coaching soccer when life is bonkers. But sometimes those callings are deeper than what we realize. Without overtly speaking about Christ to these players God has used Jake and I to successfully create at atmosphere that reflects God. We have created a culture with those girls to focus on the praiseworthy and regard others as better than yourself. We have been able to create value and worth in a demographic that the world steals those very things from.

Jake and I may never get to see the sprouts from the seeds God has been calling us to plant. But it isn’t always our job to harvest….sometimes we are simply called to plant and water.

We are called to a life of obedience, not results. It is our faithful steps up the staircase that bring Him joy.

I know that really isn’t a good devotional, but I am hoping that it may encourage you in whatever odd task God has called you to.

Alright, it is officially midnight and one boy is asleep and the other is close….that’s my cue!

May God bless you this week,

Leah

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This week we started settling into our new routine as Jake headed back to work for teacher workdays. Almost everyone was masked for these meetings and they practiced social distancing so we felt comfortable with things this week. Starting tomorrow students will be returning and our district is not requiring masks. Jake will obviously be wearing one and we will continue to pray protection over him and everyone in that building.

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Side note here- Jake and I are still very cautious about taking the boys out in public, but he and I take turns running soccer practices with the high school girls, running Bible studies, and attending church. We even held a back to school cookout at a local campground this week with about 40 teens. Tonight we had the youth girls over for a “driveway hangout” and plan to do another one on Tuesday night with the soccer team. We social distance as much as possible in these settings and use the common sense God gave us. When the boys do have to attend, they stay in the periphery with one of us. We haven’t been in strict lockdown like we were in March, but still are very cautious.

But there is something that feels so out of control about Jake teaching a whole group of teens in a very small confined classroom. I am thankful God determines our life timeline and not this crazy ‘rona.

New sleep routines took effect and oh boy what a wild ride. Night one was the roughest and both boys stayed up until 2:30am, excited to be in the same room as each other. As the week progressed and both boys learned the new routine things started to get a bit more predictable. I still can’t seem to get both of them fully asleep by midnight and I am up and down with one or the other about 4 times a night but at least we are finding our groove! We are ranging between 4-6 hours a night.

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Levi has abandoned all napping unless I get him in the car seat, so by dinnertime he is pretty savage. But in his pre-maniac hours he has been so sweet. I have been blown away by the small gestures he does all on his own…

When he hears the shower stop he runs into the bathroom to hand me my towel. Seeing that tiny toddler hand shoot through the curtain with my towel is just the sweetest thing.

One morning he went eerily silent and when I went to find him he had gathered all the dirty diapers (5 had collected in the bathroom overnight) and threw them down the diaper chute to be a helper.

When I took out the bathroom trash, he got a new trash bag out all on his own and put it in the can. I mean, even Jake doesn’t do that one!

When he watches a funny video on my phone, he excitedly carries it over to Malachi so he can see it too.

He also picks out Malachi’s favorite toy and carries it over to him, setting it on his lap and holding Malachi’s hand to help him activate it.

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Time and time again he surprises me with his sweet, inclusive heart. And Malachi just eats up the attention Levi gives him.

Malachi has been thoroughly enjoying all of the time we spent at home this week. I try to vary his seating throughout the day so he doesn’t get uncomfortable but this week he rubbed a giant pressure sore/rub burn on his arm while in the activity chair. Poor Malachi wasn’t able to tell me until it was too late.

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He also got his new AFO braces this week but sadly they came plain white instead of the cool colors he was expecting. We decorated them with superhero stickers but Levi keeps peeling them off (shhh don’t tell Malachi- he will be crushed) so we have to find a better way to dress them up for him.

This weekend Jake and several of his friends tackled phase 2 of the therapy pool project. There is only a small window of time when Malachi can swim in the pool due to the sunlight. Even when the pool is mostly shaded the glare from the sun makes him close his eyes tight and he doesn’t enjoy the swim session as much as he does in low light. We have been working on building a roof over the pool and a deck around it for his wheelchair as he grows.

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On Saturday the men worked for 10 long hours and made an incredible amount of progress! Early next week we should get the roof, a railing on the tall side, and some stairs. I will post updated photos next week!

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This week I will have to take the boys to their first Chattanooga appointment since March. I am a little anxious as the hospital building we have to take them to also serves as a walk-in clinic for children. We have been working with Levi on wearing a mask to help prep him for his Cincinnati trip in a few weeks. He is up to tolerating a whole 10 seconds haha.

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Speaking of Cincinnati, Levi’s breathing has been awfully loud this week. My imagination has been sparking about what they are going to find when they get in there. I would not be surprised if they have to do another supraglottoplasty (trim the epiglottis tissue away from the airway). But I am really hoping they will still be happy with what they see. I hooked him up to the pulse oximeter machine this week and his oxygen saturations are still staying in the safe range.

Levi is still working on jumping and it brings me so much joy and laughter to watch him. I captured it on film this week to share with you- hopefully it brings a smile to your face:

This morning in Sunday School with the youth I taught some lessons from the story of Gideon. One of the lessons that I shared with them was one that applies to all of us.

In Judges 7 Gideon prepares for war against the Midianites. As he gathers his large army God speaks and says “You have too many men.” Gideon sends a batch of soldiers home but still God speaks those same words. By the end of the pruning process Gideon is left with a mere 300 men.

Yes, there are explicit reasons in scripture why God did this. One of the biggest reasons was that He didn’t want the Israelites, who were already in a rebellious state of mind with God, to claim that it was by THEIR power that they defeated the Midianites.

But I like to find ways to apply scripture chunks like these to myself and the teens in present day. I am not in a state of rebellion with God or struggling with pride in moments of success. But as I munched on this scripture this week I reflected on times in my life when God has pruned my “comfortable safety net”. For Gideon those men represented power, confidence in battle, comfort. But those are the very things that God wanted to strip away.

Jeremiah 17:7 “But blessed is the one who trusts in the Lord, whose confidence is in Him.”

God doesn’t want us to work in the comfortable, He wants us to walk in faith. He wants us to approach impossible odds with a confidence in Him…not our own might.

I think about the many ways that God has painfully pruned things from my life that I saw as necessary, later to find out the many ways those “necessary” things were holding me back from a life dependent on Him. Pruning hurts, especially when you can’t see the purpose in the pain. But it is such a huge part of a walk with Christ!

There is always a cringe-worthy moment when God calls you to release something that are clinging to. But He sees the greater things that we can grasp if we only simply let go.

I also look at the 300 men that God left for Gideon- they were solid warriors, able to help him fulfill the task at hand. I think about my 300. I think about the friendships in the last two decades that have fallen away, friends that weren’t able to help carry the load that God knew He would bring to our family. But oh how I treasure my 300…those very special friends that pick up the swords and go to battle with me. God knows the size of the battles we are about to face and the very people we will need by our sides.

I want to type more but it is nearing midnight and Levi is wrecking the house around me in a tired rage. I guess that means it is time for us to begin the bedtime games.

Please pray for our family this week as we continue to settle into life. And continue those prayers of protection over our fragile boys.

Much love,

Leah

 

Chasing Contentment

Our little Malachi is growing up! This week we have dealt with lots of meltdowns and had to work through some pretty big 7 year old emotions.

As we prepare for Jake going back to work tomorrow we are trying to reconfigure nighttime routines. On Monday I suggested to Malachi that maybe he could start sleeping in his big boy bedroom all by himself and he had a HUGE meltdown. He sleeps in the bed with me so I can reposition him throughout the night, but lately he has not been sleeping well and I am confident he will wake up Levi if he is sleeping in the same room with Malachi and I.

The thought of being in a different room hurt his feelings so we tabled the conversation and tried it again at the end of the week. We talked it up as the week went on, telling him what a big boy he would be and how it would be a good example to Levi. I also bribed him with ice cream, which in the end was the big winner.

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Last night Malachi slept in his big boy bed for the first time in years! Now I barely slept, anxiously watching the monitor to make sure he would remain safe. With his tone and his seizures he has the ability to fling his body and I am terrified he will find a way to accidentally smother himself. The pillow is a new thing, but with his shunt I just feel like it is more comfortable than laying on the mattress.

He still isn’t sleeping very well, but managed to stay in his bed from 1:30-6! Tonight I will be attempting to get Levi into his bed after he falls asleep. Wish me luck. If I am in zombie mode for the next few weeks you will know why.

Malachi had several other meltdowns this week for various reasons. He has become very vocal if he feels like he isn’t being included and shed some tears this week when we visited with some friends. I have to say that this is one of the hardest things for me to manage as a special needs momma. It makes me so cautious to not take him into scenarios where he can’t do the things everyone else is doing. But there is also the balance of letting Levi do those things with friends. It is such a hard balance to find.

Both of the boys have sincerely missed hanging out with other children. We spent some time around cousins this week and seeing them light up reminded me of how important playing with other kids is.

His final high emotion moment was on Friday when we went to pick up his new AFOs (braces). He was supposed to get these at the beginning of July but as we were loading up to make the drive they called and asked to reschedule. The make-up appointment was Friday and he was so excited to get his new shoes. We ordered superhero stickers several weeks ago to decorate them with and he has already picked out which characters get to go on them.

We made it to the appointment only to find out that the gentlemen had accidentally left them in Chattanooga. Malachi’s excitement turned to disappointment when I told him he would have to wait a few more days to get his new shoes. He was vocally mad when we got home empty handed so we took a few stickers and put them on his current braces to give him something to be excited about. That worked like a charm and he was content with the gesture.

Although dealing with his emotional swings is new territory for us, it brings my momma heart so much pride. I love to see him be so opinionated and vocal. I love to watch him make the effort to have his voice be heard by others. When we were freshly home from the hospital seven years ago Malachi was almost too “go with the flow” and didn’t even cry a lot when painful things happened. Watching him form opinions has been so encouraging.

This week I have been working on paperwork to officially homeschool Malachi. Students with disabilities are annually given an allotment of funding to help the school system provide them with a free and appropriate public education. In the state of Tennessee there is a special program where students with disabilities can homeschool and receive the child’s allotted educational funding on debit cards to be used for curriculum, therapies, tutors, etc. We are working towards this route for the school year as in-person learning is not an option for him and remote learning wouldn’t meet his unique needs.

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Levi has officially become a toddler tornado. Our house is a total wreck within 5 minutes of him being awake. His energy is fascinating to me.

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And he has developed an obsession with his hats. Which is totally okay with me because he is a cutie. He has strong opinions on what he wears each day and is slowly morphing into a tiny control freak, but we are hoping that is just a phase.

Jake and I both have continued to be in a state of mourning this week as we count down the days until he returns to work. Life is so complicated but with both of us tackling it, it didn’t feel so bad. I am about to be abruptly reminded of how intense our days can be. Even thinking about it has been sending me down the rabbit hole towards some negative thoughts and attitudes. But my radar has been going off as I head those directions, reminding me that I have to stay focused on the good.

Whatsoever things are true, noble, right, pure, lovely, admirable, praiseworthy, excellent think on these things. 

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This week I will be taking a deep breath and repeating this verse over and over again, imprinting it onto my heart. Contentment is a choice. It is a path you have to choose to travel. My prayer is that God continues to grant me a heart of contentment no matter how complicated our life may get.

Philippians 4:12-13  I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength.

Please join us in prayer this week that we continue to draw strength from God instead of trying unsuccessfully to manufacture it ourselves. And please pray a hedge of protection over our family as Jake re-enters the world.

Much love,

Leah

Green Pastures

Our little Levi’s next surgery is officially on the calendar for August 28th. We will be making the trip back to Cincinnati for several pre-op specialist appointments followed by surgery that Friday.

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This is surgery number 26 for Levi and will go very much like the previous ones. When we sign waivers in the pre-op room we check all the boxes for possible interventions. There are actually two parts to each surgery- a microlaryngoscopy and a bronchoscopy. During the microlaryngoscopy portion sometimes they need to trim his epiglottis, sometimes they do a balloon dilation in his airway to break up scar tissue, sometimes they do nothing but look and evaluate. But in addition to those interventions a pulmonologist cleans Levi’s lungs during the bronchoscopy and sends the fluid from them off to see if there are food or drink particles making their way into his lungs.

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We don’t expect to be admitted overnight and will likely try to make the drive straight home from the hospital that day if he is stable and doing well. Sometimes I have to run him on oxygen for a few hours so I keep him hooked to a hospital grade pulse ox for the 6 hour drive home to Tennessee. He typically runs a fever for a day or so after, which is an expected result of the bronchoscopy portion of the surgery. When we spoke with the surgeons last year the next expected major step for enlarging his airway would be removing the tonsils and adenoids but that wouldn’t happen this go around and would be scheduled for a later date if they decide it is truly needed.

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Obviously the BEST news we could receive is that his vocal cords are no longer paralyzed and that God has healed him! Unfortunately all of the clinical signs point to that not being the case and we fully expect them to say that things are the same as the last surgery. As long as we continue to avoid the trach route we are happy!

In order to find out if the cords are still paralyzed they have to send a camera down his nose when he is fully awake, which is a traumatic experience for both of us as I have to do the bear hug to keep him still.

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Because of COVID precautions Malachi will not be permitted in the hospital, and truthfully we wouldn’t want him in there anyway! It looks like Levi and I will be making the trip solo and Malachi and Jake will stay in Tennessee. Levi will also be given a COVID test pre-op.

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And things could likely change between now and then based on the spikes happening all over the country! But for now this is the plan we are going with. It will require Jake taking a few days off of work to sit home with Malachi since we aren’t sending him to school this year.

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Speaking of the pandemic…

Our area is starting to get a little more saturated with cases. Many of the stores we used to frequent are now requiring masks nationwide and we are thrilled! I was able to run into one this week for a few minutes to pick out some fresh produce; we have been doing grocery pick up but there is something about inspecting and picking out your own produce. I was able able to snag some fresh salmon from the seafood counter which was a real treat. And side note- still no bears this week! When we cook salmon we typically get a bear visit but not this week and we are loving it.

Malachi has been doing SO GREAT this week! His seizures have calmed down tremendously from last week and he even slept for 7 whole hours straight one night. What a blessing!

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All three of the Carroll boys got haircuts this week and now looking sharp! We have a friend that comes out to the house to cut hair for us.

 

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We took a few weeks off from horseback therapy and Levi hasn’t adjusted too well to going back to the barn each week. For the last two weeks we have dealt with a lot of tears, but hopefully with the routine back in place he will be able to adjust back to his normal, happy self. I was able to snap some cute pictures once we got him calmed down. We think the therapists masked face had something the do with the meltdown so we gave her permission to remove it for his session.

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Malachi is a rockstar cowboy each week. His favorite part is trotting on his horse, Farley. He has to sign to the horse when he wants him to go by tapping the horse gently on the neck.

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It wouldn’t be a Carroll week without a goofy story. You likely don’t know this about me, but I am not a fan of squirrels. When I was in 8th grade I went to Washington DC with a friend and we had heard that the squirrels were so used to people they would eat out of your hand. Of course, we decided we needed to experience this phenomenon and spotted a squirrel to approach. We squatted down and called it over with a handful of chips and when it turned to walk towards us there was clearly something wrong with it. As it ran towards us it couldn’t support the weight of his own head so it flopped to the side, banging on the ground as it ran frantically at us. His eyes were dilated and he was foaming at the mouth. It was the stuff nightmares were made of!!

We got up and sprinted away from the freaky beast and since then I haven’t trusted squirrels. I see them all as tree rats, one step away from the foaming mouth.

This week I was home with the kids and looked outside at the treehouse and spotted a squirrel. The deck part is 12 feet off the ground and we have never had a furry friend make it up there before. But here he was, perched by the window eyeing our bird feeder. Since Jake was gone I decided to sneak over and take a picture of it to show him later. As I crept over he disappeared out of sight, and when I approached the window he lunged and flew across the window…I have no idea what he is thinking because at that point it was at least a 14 foot drop to the ground and there is no window ledge.

Somehow he used his freaky fingers to cling to the ledge of the siding and got himself back over to the deck. But as you can imagine I wasn’t expecting him to fly by my face. Oddly enough I caught in on video, but I am too embarrassed by my horror scream to show it to you haha. Instead I will share a still shot from the video and you can use your imagination on the rest.

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Levi witnessed his mother’s craziness and now loves to re-enact the whole scene. He has also been re-enacting mom sneaking out and looking for the bears from the treehouse. He claims to see several and when I ask him what the bears are doing he says “not much”. Goofball.

Oh and two words to sum up the bit of chaos we have had this week: potty training. Game on.

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This coming week is our final week with Jake home all day. I am selfishly mourning the loss of extra hands throughout the day. It has been such a big blessing for our family to have him home for the last four months. We could really use your prayers for health as he plunges back into a germy environment.

As I reflect back on these weeks at home as a family I can’t help but think of the beginning verses in Psalm 23:

The Lord is my shepherd, I lack nothing.
He makes me lie down in green pastures,
he leads me beside quiet waters,
he refreshes my soul.
He guides me along the right paths
for his name’s sake.

Over the last four months God has used a pandemic to give our family a much needed break…one I don’t think even we recognized we needed. Initially we feared the impact that stopping therapies would have on our boys, but being able to swim in the therapy pool, play as a family, and spend our time at the house has turned out to be better than any therapy we could chase for the boys. They have both made significant gains and we have connected as a family.

I love the wording of the verses above. That second line: “He makes me lie down in green pastures…” that one makes me laugh a bit. Sometimes we get so sucked up in the busyness of the world that we don’t even recognize the green pastures surrounding us. And like a shepherd makes his sheep lay down and rest, the Lord does the very same thing for us! Just like little Levi needs his quiet time each afternoon so he can rest, God too recognizes when that rest is needed in our lives.

This week I am thankful for the Shepherd. I am thankful that He knows the route to all the green pastures, still waters, and right paths. And I am thankful that He knows me well enough to see when I am weary and gives me the opportunity to lie in those pastures. I am thankful for a God that knows me better than I know myself.

Please start joining us in prayer for Levi’s upcoming surgery. It is not a risky one in of itself but the idea of him traveling and entering the hospital for any length of time during this pandemic is not ideal. Pray protection over Jake as schools are about to open in our town. Pray for wisdom for me to process how to handle the transition back to being a solo stay at home mom.

May you allow the Shepherd to lead you this week.

Leah

 

Dark Clouds

We are continuing to prep our lives for Jake returning back to work. We have rearranged one of the spare bedrooms for Malachi, Levi, and I to sleep in which will give Jake full access to the master bathroom and closet in the mornings to get ready for work. He has just two weeks left of summer!

We set up a new big boy bed for Levi with the hopes that we can successfully carry him over to it each evening. Bedtime is a little wonky for our family, which is okay with two parents helping but very difficult for just one of us to accomplish.

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Levi falls asleep around 11 each night and by 11:30 we hook him up to his nighttime g-tube feeds. The pump runs from 11:30p-7a but the biggest issue is that he moves SO MUCH while he sleeps. You have to constantly wake up and check the tubing, making sure it hasn’t accidentally gotten tangled on blankets. The crib was working well but now transferring him in and out of it has become too much of a challenge. The other big issue is that he regularly rolls or sleepwalks off the bed at night, and the pump bag stays on the bed, leaving very little tube length before ripping his g-tube out of his tummy. You have to have eyes and hands near him the entire time he is asleep.

But our sweet Malachi doesn’t go to bed until around 1am. And getting him to bed is a challenge, as that is one of the most seizure friendly times of day for him. So Levi will be unsupervised for a bit after he is hooked up and I am still in the living room getting Malachi calm enough to sleep. We were able to get a bed for him that has very high sides, which we are hoping will prevent him from rolling out and dislodging the tube. I also have a baby monitor we will keep on him at all times.

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Right now both of the boys sleep in separate rooms, each with an adult. At one point several years ago Malachi was sleeping in his own bedroom, but with his positional struggles and nighttime seizures I just feel more comfortable having him close to me. I am constantly waking up and moving his position to make him more comfortable when he starts to stir. I think about being stuck in the same position all night and how uncomfortable that must be for him, and I do my best to switch him up as much as possible.

My fear in putting them in the same room is that one will keep/wake the other up and my very limited sleep will become even more limited. But I am sure we can figure out something that will eventually work. Hopefully haha.

We are trying hard to not think about the potential germs Jake will be bringing in each day and are continuing to focus on faith over fear. Without Jake teaching we wouldn’t have the insurance that the boys both rely on. And obviously the loss of income isn’t manageable for our family, so we just have to continue praying and believing that God will protect our family.

Malachi is losing all of his baby looks at turning into a big seven year old! He is cutting some big molars and we suspect his front teeth will be coming in soon. He only has one real baby tooth, the rest are all capped, so getting new teeth is a pretty big deal. His seizures have amped up a bit, and we are assuming pain from the new teeth has something to do with it.

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We had some wonderful friends from church offer to sit with the boys this week, and Jake and I got the chance to go out on a date! Aside from last week’s outing, we haven’t been in a real restaurant since March and we still don’t feel comfortable being inside public places right now. We found a restaurant with a large patio area and snagged a table in the corner away from everyone else. The waitress stayed masked and we felt safe with the setup.

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Whenever we get to leave the house without the boys it just feels so unnatural. Even the movement of getting out of the car and walking directly into a place without a 5 minute unloading process is a real treat. And eating a meal without toddler demands and seizures is refreshing.

After dinner we drove over to our alma mater and walked around the campus. We reminisced as we passed each of the buildings, remembering friends, professors, and silly stories. Jake and I both worked on campus during our four years there and know the place inside and out! I was responsible for paying for my years at school and consistently worked 40 hours each week in several different roles…the computer department, campus safety dispatch, a special needs program at a local church. Between Jake and I we have enough stories to last a lifetime at that place! Here is a photo from the college days.

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We went into the gym to check out the famous broken bat from when Jake and his fraternity broke a world record, playing 101 straight hours of softball. If you ever want to hear some hilarious stories from those four days just ask. Jake ended up in the hospital at one point and had temporary amnesia around day 3 from sleep deprivation. He didn’t even remember how to swing a baseball bat even though he had already been playing for three whole days!

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But one of my favorite memories was from a random park bench in the middle of campus. During our freshman year we both stayed on campus and picked that specific park bench to meet in the evenings to do a Bible study together.

We took a few minutes to sit at the bench this past Friday night and it flooded back the memories. The bench was much more worn than it used to be, weak and flexing under the pressure of the many years it has been in the elements. But it was bolted to the same concrete square that was there many years ago…the same strong foundation.

I couldn’t help but smile thinking back to that young, careless couple that used to sit on that bench all those years ago. And just like the bench, the elements have changed us. This challenging life has made us almost unrecognizable, yet we still remain firmly secured to that same foundation that God placed under our feet all those years ago.

Our marriage has been through storms that few others have to experience. But God has so graciously carried us through each one, allowing our relationship to remain firmly connected and rooted in Him. I think about the months and months we have had to be apart due to one child being in the hospital. I think about the hidden challenges that come with raising a special needs child- the jealousy of a “normal” life that Jake gets to escape to each day when he is working. Or the resentment that breeds when one parent gets more sleep than the other.

Even now, having to make long term plans to sleep in separate rooms to protect the health of the boys. Our marriage tends to fall secondary to our responsibilities as caregivers, not parents. Our primary goal is simply to keep these boys healthy and alive. But right now that is the calling God has placed on both of us, and we choose to focus on contentment in this unique calling instead of focusing on the things we are missing out on.

I have been personally struggling this week with a few big emotions. These past few months have been wonderful for our family. We haven’t had a medical emergency since January, thus breaking all previous records. As I drive around this beautiful town God has placed us in, and as I look out the back deck of my comfortable home at the vast mountain my mind keeps reminding me that our tragedies aren’t over. At some point these mountains and sunsets will again be replaced with hospital walls and windows that don’t open.

I am struggling between soaking in the calm moments, but also sensing that I still have yet to experience the “worst day of my life” and that it could come at any moment. We have experienced so much pain and tragedy, yet I realize that we haven’t been through the biggest storm yet…the loss of a child.

When you are raising a medically fragile child you can never fully relax. The harsh reality is that we attempt to live a normal looking life in between medical emergencies, knowing that one of those very emergencies will eventually take his life. It will make you crazy if you dwell on it too much. I guess this week I can’t seem to shake that dark cloud.

It is in weeks like this one that I have to turn to God’s word and seek His peace.

Philippians 4:6-8 “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable- if anything is excellent or praiseworthy- think about such things.”

This week I am praying that God continues to cover me with His peace and guard my heart and my mind when my earthly emotions trump my faith in His plan.

God bless,

Leah