God The Multiplier

Let me start off with a sweet video of the boys. Malachi loves to lay next to Levi, and lately Levi has been getting a bit grabby. I have been watching closely to make sure he won’t hurt Malachi but their encounters bring me so much joy:

The calendar. Ugh. I know I talk to you often about the love/hate relationship special needs parents have with the calendar, and this week has been no exception.

As we creep closer to Malachi’s big foot/hip surgery on November 20 I have started having to officially book his g-tube surgery so it can be done prior to. This week we spoke with the surgeon and have scheduled it for October 29. That means that Malachi will be having two relatively big surgeries within 3 weeks of each other, and that thought terrifies me.

June 2016 was the last surgery for Malachi- almost two and a half years ago! Praise the Lord that we have not needed anything surgically fixed recently for him!

With his imagination running wild these days I snagged him some Hulk hands to pretend with.

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We are still waiting to hear back about scheduling Levi’s second sleep study, which I am in no rush to do. In the meantime we are turning up his oxygen at night and naptime to keep him more comfortable. After the results from the next sleep study come in they want to do another scope procedure in Cincinnati around the month of December.

I hate seeing the word “surgery” on my calendar, and to see it three times makes my stomach churn. Not to mention all the pre-op and post-op appointments and bloodwork and multi-day hospital stays each of those will bring.

Malachi’s mysterious fevers are still come and go; he has another low grade one right now of 99.5 but it seems to be dropping quickly. It sounds like a conspiracy theory but it has happened the last four times he has been in the church nursery (he was the only kid in their all four times). I spoke with the neurosurgeon who said that if it were shunt related the fever would be consistent and stick around, so we are feeling more comfortable about that. He is still getting to sleep in the big bed with mommy and daddy most nights so I can keep a close watch on him, and he is still loving it.

Some sickness has been floating around the county so we decided to keep him home every day this week except for Friday when he has his physical therapy sessions. Some of his classmates and teachers had households with strep victims so we thought we would play it extra safe. He did get to play in his soccer game on Saturday and his excitement leading up to the day was so fun to see. It takes him a little while to grasp a new schedule change and this was his breakthrough week where he was excitedly anticipating the day.

We took our high school soccer team to a game at Lee University on Saturday night, and naturally the boys joined us. Levi wailed every time the crowd went wild and Malachi was so incredibly invested in the game. I sat with him and gave him the play by play of what was happening and he hung onto every word. Lots of giggles and laughter for him that night.

Both of the boys met with their new feeding therapist this week and I am so happy to report that I feel it will be a perfect fit! He is a Christian and believes in the same manner we do regarding Malachi’s quality of life and us wanting to make however many years he has on earth exceptionally fun. So if that boy wants to eat a half a bowl of queso at the Mexican restaurant (true story from Thursday by the way), then by golly we will let him! We want feeding to be fun and not torture for him.

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Our goals for the boys are so drastically different when it comes to eating by mouth. Levi is a trickier case as we have to make sure we aren’t sending any liquids down into his lungs. My goal for him is safe eating until a) God heals him, b) his vocal cords wake up, or c) he is old enough to verbalize how comfortable he is managing liquids. Our overarching goal for him is to get his g-tube permanently out.

Meeting with a new therapist or specialist is quite the task for a single one of my children, let alone both at the same time. I keep a summarized copy of their medical history with me at all times and use that to drive the conversation. Usually by the end of the conversations I have used enough medical terms and acronyms to somehow convince the person that I have a background in healthcare….definitely not the case! Just a momma who loves her boys. The medical histories portion alone took a solid hour to cover on Tuesday.

We will be adding feeding therapy sessions for each boy to our Tuesdays. Sweet, solitary Tuesday are now being overtaken by yet another therapy. In addition to our specialist appointments that means we have:

Monday- physical therapy for Levi

Tuesday- feeding therapy for both boys

Wednesday- horseback therapy for Malachi

Thursday- occupational therapy for Malachi

Friday- physical therapy for Malachi

This is a before and after of little Levi during a tickle attack from Malachi.

While we spent most of our week tucked away at the house, we did venture out with Jake to Home Depot on Monday. We trialed putting Levi in the carrier with all of his gear hanging off Malachi’s wheelchair which worked great until Levi decided to vomit. Obviously our rigged up system turned lots of head and started lots of conversations.

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Has God ever laid something on your heart? Pressed something on your mind and you just can’t think of anything else?

Lately my mind has been stuck on moms in the NICU. September is NICU Awareness Month, and after 243 days in the NICU it definitely is a topic that hits home. The heartbreak of being in that environment is something I wouldn’t wish on anyone. Days went by and it was all I could think about. I finally settled on turning those thoughts into action and resolved to buy some gift cards and hand write some encouraging cards for them to go into. I figured I could send them to the NICU with some of our nurse friends and they could pass one out to a mom who was having a rougher than normal day.

Then 6am Thursday rolled around and I was wide awake laying in bed with both boys sleeping in the room with me. I wanted so badly to sleep but I felt like God was telling me to get up and write. I tried to ignore it and go back to sleep, thinking I would just write it later but I continued to feel an urging so I got out my phone and typed out what was on my heart.

Later that afternoon I made a Facebook post with the writing, offering for anyone else that wanted to donate money towards a gift card to send money to my Paypal and I would handle the rest (you can read the post at the very bottom of this blog entry). I thought it might be nice to be able to donate 20-30 cards. So far we are up to 93 gift cards to make NICU moms feel special and loved!! How amazing is that!! If you have any interest in donating, our PayPal is: https://www.paypal.me/miraclesformalachi

It might take me a few weeks but I will be chipping away at the handwritten cards part of this project, praying that God gives me the words to write in each one and then gets that specific card into the hands of a mom who needs to hear them. I am excited to see where God is going to go with this one!

Okay, so why the story? This whole thing was just another reminder to me of the importance of listening and obeying God. We talked in Sunday School this morning about priorities and I explained how in our lives we no longer ask “Do we have time for this?” but instead we ask ourselves “Does God want us to do this?” When God calls us to do things we are seeing time and time again that he opens doors that have been bolted shut and gives us a strength that supersedes anything we could do on our own.

God is a multiplier. He takes what little we have and he makes it something BIG. Like the five loaves and two fish miracle from the New Testament, God can take the meager rations that we have and use them to spiritually feed thousands. But we have to offer him the fish and loaves. We have to be willing to give him all that we have left.

We see this played out in our lives on a daily basis. I should not have any energy with the amount of sleep I get each night. My mind has no opportunity to relax and reset. Yet God continues to press me towards tasks He has chosen me to do…and I have learned that if God is leading me to do something that I need to obey.

Yes, that means that when you look in from the outside at our crazy lives you will tell me that we are involved in too many things…coaching soccer teams, running an indoor soccer league, youth pastor, starting a children’s ministry (that’s this weeks new addition haha), and so much more…

But what you may not understand is that God has CALLED Jake and I to do each of those things. We don’t do they because we are bored, need the money, or feel qualified. We simply do them because we feel like they are each a ministry. God wants us to be involved in those things. Our job is to recognize God’s leading then sit back and watch him multiply it. Watch Him turn it into something special.

But how many opportunities do we miss when we don’t listen to God’s leading and follow it? So my challenge to you this week is to be sensitive to the things that God lays on your heart. Don’t dwell on them until you forget them….act immediately and with excitement and anticipation as you watch God work through them.

And one final laughable note…almost exactly one year ago I wrote a Facebook post about my pregnancy. At this stage, everything was looking wonderful and there were no issues with Levi at all. I was a few weeks away from giving birth and had done an update with a list of 10 things people may not know about my pregnancy. The list ended with this:

10) We believe firmly that God has BIG (and I mean HUGE) plans for Levi’s life. I can’t tell you what they are yet, but world- you better watch out because he will be moving some mountains just like his big brother.

Wow! That is all I know to say.

God bless,

Leah

Here is a copy of my lengthy Facebook post:

NICU Awareness. Anyone want to help bring a blessing to someone in need? Warning: Long Leah post up ahead haha…

Imagine unexpectedly leaving your home today and not going back for 4 months. And when you do return it is like a perfectly preserved time capsule of a person you used to know- but your journey has changed you beyond recognition both physically and emotionally. You see all of the hopes and dreams you envisioned for your pregnancy and unborn child and have to hold them up against the reality of the experience you have been given.

The NICU is a world I never knew existed until a was abruptly thrown into it. The NICU is a place of acronyms you have to google. A place with a smell you will never forget- not bad, but memorable. It is a place where you unknowingly memorize floor tiles after spending weeks watching your tears hit them. It is a place of isolation and loneliness. It’s a place where you learn how to read the faces of doctors, prepping your heart for the bad news they are about to deliver.

Between both of my boys I have spent 243 long days in the NICU…that calculates to 9 months. Those are days I get nauseous looking back on- but also know I wouldn’t have wanted to be any other place than fighting alongside my warriors boys, each with their own unique NICU journey. Malachi, born at 24 weeks without a heartbeat. Levi born healthy at 34 weeks with a rare diagnosis of bilateral vocal cord paralysis. Who would have ever imagined that my 34 weeker would outstay my 24 weeker by 3 weeks. The NICU world is full of surprises and a variety of babies and conditions.

The NICU is a place of heartbreak as you have to helplessly watch your children suffer. Moms of typical newborns hold their baby within minutes of him being born. NICU moms have to wait for permission to touch their child with a gloved finger. And in our case wait three weeks to hold that sweet baby for the first time, unable to move due to ventilator tubing but soaking in the opportunity to feel that 1lb 12oz miracle physically become a part of me again.

The NICU is a place where a mom doesn’t get to be a mom. A mom becomes an overseer of monitors and alarms, even though you have no clue what to do when one goes off. A NICU is a place of bad memories, like watching your son code and seeing them tirelessly fight to bring him back as they mechanically squeeze breaths of life back into him. It is watching your child’s head be tilted back at an unnatural angle as they shove yet another breathing tube down his throat. And then watching him cry from the pain but not being able to hear him due to that tube. It is truly a place of heartbreak for a mother.

But the NICU is also a place of miracles. A place where you literally get to see the impossible happen. You celebrate things you never even knew you should celebrate…the first poop, a PICC line being able to be taken out, an IV stick on the first attempt. The first audible noise your child makes. The celebration of simply surviving another surgery after spending hours in a room on your knees praying.

The NICU is also a special, one of a kind place. A place where you bond with strangers as you see the same pains and struggles written on their face. A place where you will meet some of the kindest and most caring nurses. These nurses become your only friends who “get” it, they become your child’s biggest cheerleader, they become your psychologist as you continue to process the emotions of what is transpiring. They look past your irrational moments and ugly crying because they know it is fueled by a mother’s love.

In the NICU you don’t get to be a mother very often. So you cling to any moment that allows you to feel like one. A diaper change every 3 hours, a quick glimpse at a tube free face when respiratory changes out the machines, suctioning out secretions from a tiny little mouth hoping to bring some relief to your warrior. All while whispering encouragement to your precious child that life is going to get so much better for him if he just keeps fighting.

One of the hardest moments for me was going out in public after having Malachi. No one knew that I was a new mom, after all I didn’t have a baby to show for it. But I remember the joy of going to the store the first time after having him and walking to the baby section. I BELONGED in this section. I HAD a baby to shop for. My baby was a fighter. And picking out a blanket for him that day was the best thing for my hurting mommy heart. I had 20 brand new blankets at home for him, but for some reason those blankets bought in preparation just didn’t seem special enough- or fitting for the situation. They were reminders of what should have been. I did the same thing for Levi and the healing that happens in that moment is indescribable. You feel needed…like no one else on earth knows which blanket, stuffed animal, outfit, or toy will bring YOUR baby comfort. But you do, because YOU are his MOTHER.

This year for NICU awareness day I want to provide that “mom moment” to others in the NICU and I thought I would extend the blessing opportunity to you. I will be purchasing gift cards to some stores close to our NICU in Chattanooga and writing out cards to put each one into. When a mom is having a harder than normal day- a day when the emotions get too much to bear- I want the nurses to have a stack of these blessings to draw from. A chance for a mom to get away from the NICU and do a Mom thing. An excuse for her to breathe some fresh air guilt free as she shops for her baby.

So will you join me in this project? I will do all the hard work for you, just PayPal whatever amount you would like to contribute! And if you don’t know me personally be assured that every penny you send will be used as promised. What an easy way to send a big blessing to a fragile mom.

Feel free to share this post!

Send all contributions to our PayPal: https://paypal.me/miraclesformalachi
If you would like to mail a contribution just send me a private message for my address. And thank you for helping me accomplish something that God has laid on my heart.

 

 

 

Watching The Angels

What an up and down week we have had. Malachi suddenly started running a fever on Wednesday evening so we started to go through the checklist…could it be pneumonia, a shunt malfunction, something viral, did he simply get overheated? Do we risk taking him to the doctor where he could possibly catch something worse? Do we just wait it out and see what happens?

We went with the watch and wait method. He had been at the barn for horse therapy earlier that afternoon and it was a hot day. With the help of some Motrin his fever was gone by 10pm that night and we were feeling pretty confident it was just an overheating/brain issue. As he always does, his temperature continued to drop the opposite direction so we worked to stabilize it and he got to sleep in the big bed with mommy and daddy and watch cartoons that night (a super special treat).

To play it safe I kept him home from school the rest of the week, but he seemed back to normal. Tonight at church he vomited out of the blue and started running a fever again. We will be watching him very closely, as both of those can be signs of a shunt malfunction. If the fever is still there by morning we will likely need to take him in for imaging.

Even with the threat of a potential emergency brain surgery (which we aren’t even confident is needed) I am working myself into a frenzy trying to process how we will manage both boys. We would need to keep Levi away from the hospital and germs, but Malachi undergoing surgery, particularly on his brain, is a tough thing for momma to go through alone. It is easy to forget how complicated things truly are when we are at home and everyone is doing so well. We will just continue to pray that this is a brain regulation issue and no intervention is needed.

Levi is being his same wiggly self. Our home looks like a Babies-R-Us as we have devices, seats, jumpers, bouncers, and swings everywhere. When I set him on the ground to roll around he ends up with the cords wrapped around his neck and pulling on his g-tube; when I am feeding Malachi and cant get to Levi quickly this can become dangerous so I rotate him through his gear. He still gets plenty of time on the ground but only when we can closely supervise him.

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Levi has mastered the “throwing things” cause and effect game and LOVES it. He also has to see mommy at all times. He recognizes his name and will turn to you when you say it.

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Malachi got a new dinosaur toy that wraps around his arm and it has been a HUGE hit. He uses his imagination to pretend like it is biting us and will ROAR. It is fun to see him try to engage play with Levi. I took a video for you all:

This week the boys are scheduled to meet with their new feeding therapist. I am very eager and excited to see how this will go. We need some forward progress with both boys and I need just the right person to help me tackle it.

Tonight’s verse comes from Matthew 5 which is where Jesus gives his sermon on the mount. If you get time this week you should read through the first 10 verses.

When I read scriptures I have read many times before, I always try to look with fresh eyes and be open to anything that God wants to highlight for me. As I read my mind started processing some of the words and led to some further studying.

Here are a few of the questions I struggled through:

-“Blessed are the poor in spirit, for theirs is the kingdom of heaven.” (verse 3)    I found myself what it meant to be poor in spirit. It almost sounds like a negative thing, like someone who isn’t close to God, or spiritually bankrupt. But after spending some time reading commentaries I understand that it means being humble and acknowledging our constant need for God.

-“Blessed are those who hunger and thirst for righteousness, for they will be filled.” (verse 6)   I started to think about what it means to hunger and thirst for righteousness. If you look at the word “righteous” in the New Testament it comes from a greek word (“dikaios”) which means observing diving laws or upright, faultless, innocent, and guiltless. Can we ever achieve the title of “righteous” with that definition? The Bible uses that adjective with several people: Job, Abraham, Noah, David. How did these sinful people earn such a great compliment from God?

While I know that none of us can remain sinless, I do know that it brings God joy when we hunger and thirst to live a lifestyle that honors Him. He sees our hearts and our motives. Righteousness should always be something we strive for, even though we know we will mess up along the way.

-“Blessed are the pure in heart, for they will see God.” (verse 8)    This one made me stop and think. When I think of a person that is pure in heart the first thing that comes to mind is my Malachi. What a pure little heart he has, and Jake and I are confident that he will spend eternity with God- probably running like a wild man on his perfect little legs.

But I do want to share something really unique and special with you….

And in doing so, I recognize that some of you may think I am crazy haha. I am a spiritual person, but what happened this week was a new one for me.

This week Malachi has been staying up way later than normal. Jake has to work so he and Levi go to bed and Malachi and I stay in the living room, talking and playing while I wait for him to tire out. Earlier this week I had a discussion with him and I told him if there was a room full of little boys and I could pick any of them to be my son, I would choose him again and again. We talked about how special and unique he was and how God designed Him beautifully. Malachi was eating up the conversation and signing “more” so I kept the talk going.

We talked about how much joy he brought his mommy and daddy, and how he was being such a great example to baby Levi on how to make good decisions. I talked to him about how much God loves him and how he points people to Him. He grinned his sweet little grin at me, kissed me on the cheek, and gave me a big hug…reminding me that his sweet little brain understands almost everything I tell him.

We snuggled chest to chest on the couch and he started to drift towards sleep. Then suddenly he started giggling. And BIG TIME. Usually I can pinpoint what is making him giggle, but this time it was just so random. Then he sat upright, pushing himself off of my chest and looked straight behind me.

Malachi has corticol visual impairment so he is legally blind. He really struggles to see things, but he locked his eyes onto something and tracked it. He was so focused on something and whatever it was was continuing to make him laugh hysterically. My blood ran cold as the whole thing creeped me out a bit in a cool way. There was clearly something else in the room- he saw it and I felt it.

We have always felt that Malachi sees angels and I have no doubt that he saw one that evening. He sat up and tracked that angel with his eyes for 18 minutes straight with a strength and a visual ability that he has never had before…especially for that length of time.

I kept laughing at myself for getting freaked out (which happened multiple times) as I realized that God knows I can’t handle seeing an angel. I know it sounds silly and irrational, but after the first few minutes I started wondering if I this was a sign I was about to lose Malachi.

Malachi finally calmed down and started to snuggle again. We were a few minutes away from him being asleep and it happened again. He sat bolt upright, giggled uncontrollably, and tracked it again for another 10 minutes. At this point I was laughing as I watched the sheer joy on his face. I don’t know what that angel was doing, but Malachi thought he sure was doing some funny stuff.

And yes, I still got the chills and slightly freaked out the second time too haha.

Malachi has acted this way once before when we went to a church service in Ohio. We were confident that evening too that he was watching angels. His whole demeanor and body changes. And the eyes tracking is just incredible. Undeniable.

When he finally drifted off to sleep after the second tracking I thanked God for sending His angels into Malachi’s world. I thought about all of the dark times Malachi has gone through. All of the scary surgeries, hospital stays, loneliness in his trapped world. Knowing that God has been sending Malachi so many joyful, comforting moments made me smile.

Blessed are the pure in heart, for they will see God. While I believe that this verse is talking about the future life in Heaven that Malachi will have, I also am thankful that God’s face shines on my sweet boy during his time here on earth.

Please be in prayer for Malachi as we sort out the fever mystery. He and I are headed to bed right now and with fever reducers he is hanging out at 99.1. Usually if it is just a temperature regulation/brain issue it drops much lower than that so now I am beginning to lean toward sickness or a shunt malfunction. Pray for Jake and I to have wisdom.

And please continue to pray for Levi’s miracle too. That those vocal cords suddenly start moving, like nothing was ever wrong.

Much love,

Leah

 

Endure

Things I am increasingly thankful for in my life:

  • our diaper chute; I thought it was a pretty clever idea but who knew it would be such a game changer. My world is full of poo.
  • Amazon prime; I literally ordered mayonnaise on Amazon this week. Weird? Absolutely. But so incredibly helpful (Amazon, not the mayo).
  • Little House On The Prairie. It is boring enough that Malachi will go to sleep during our 3am parties, yet fascinating enough to keep me awake until that happens.
  • a dry sink; see bullet point #1
  • Jake.

Levi is growing and changing so much these days. He is now 9 months old and 16 pounds. We have been working hard on sitting independently and while we are nowhere near being able to do it yet, he still looks so proper in his attempts. Sometimes I catch myself worrying about the milestones that we have yet to reach, and then I remind myself that if I spent the first 4.5 months strapped in a hospital bed my muscles might be a little weaker than normal too. I still believe fully that God will heal Levi’s brain and vocal cords. And along with that healing, we will see these milestones!

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Gah I love him. I love them both so much. Malachi and Levi are starting to interact more with each other and seeing them pester one another fills us with joy. Levi grabs Malachi’s feet and chews on them while Malachi takes his fist and bonks Levi on the head.

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Tuesday was our wildest appointment day as we headed to Chattanooga for an early morning appointment. The night before big days like these I do the math- take the appointment time minus 10 minutes to check in, minus 15 minutes to find parking and wait on elevators, minus 10 minutes to unload all of my gear and children, minus rush hour traffic allotment, minus the one hour drive to get there, minus 15 minutes to load up the boys into the car, then from there I decide if it is reasonable to actually plan on a shower before we hit the road. 9 out of 10 times that is a big fat nope. So I guess I need to add “ball-caps” to the thankful list above.

We made it to the hospital, turning heads as we went. I am still trying to come up with a good response to the one liners that are zinged our way. Tuesday’s was from a man in his 60s “Think you can handle one more?” To which I stopped and replied “Sure, hop on!” Another one of my Leah awkward moments I am so talented at creating. He laughed awkwardly and kept walking.

We made it up to the surgeons office to sign in and I heard a thump. Confused, I looked at the ground to find that a very important piece of Malachi’s wheelchair had broken off leaving a jagged spike next to his rib cage. Wonderful.

We met with Malachi’s surgeon and talked about the possibility of placing a g-tube. There are three ways they can do these- endoscopically, laparoscopically, or open incision. Malachi has had several abdomen surgeries making this whole process much more complicated- hernia repairs with bowel loops, stomach perforations, penrose drains, shunt tubing placement, and more. Each time they went in more scar tissue formed and the probability of an easy g-tube placement lessened.

At this point endoscopically is out of the question, and it will be a stretch to place it laparoscopically (sending in a camera through a small incision first followed by tools) but we would like to try before they go to the open incision. There are risks that they could puncture the bowels trying to get the tools and camera over to the g-tube site but all we can do is cover him in prayer and hold our breath….something we have practice in.

This same surgeon has done all of Malachi’s other abdominal surgeries and we trust him immensely to be conservative when he needs to be. It helps knowing and trusting the man in charge of the decision making. We are waiting on a call back with a surgery date but our goal is to do it before his November foot/hip surgery.

As we left the surgeon’s office I made a quick phone call to the wheelchair repair shop to see if they could take a look at Malachi’s chair and off we went. Thankfully they were able to fix it within the hour!

I had promised Malachi early that morning that he could go to school after we finished our appointments, not anticipating his wheelchair breaking and other random surprises. When we got back into the car I asked him “Malachi do you want to stay home with mommy today?” to which he replied NO. I then asked him “Malachi, do you want to go to school?” and he did his YES sign. Alright buddy- school it is.

I always want him to know that he is heard, even when he cannot speak.

But now we were past lunchtime and he still hadn’t had a solid meal. I found a Cracker Barrel on the route home and in we went to refuel Malachi and mom. We like Cracker Barrel because we are a rowdy bunch and it is nice and loud. To feed Malachi takes about 45 minutes and he is just too large now to do it in the car. I quietly asked the hostess to stick us in a corner somewhere and she said she had one corner table left and it was JUST the table for us. Then she took two steps into the dining room and led us to the table right behind the hostess station. Not ideal but we will make it work.

We settled in but being right next to the entrance/exit of the dining room we got loooooots of comments, pity looks, and unwanted attention. One employee as we left loudly said “Oh my God, is she by herself with both of them!” These moments are so hard for me. I want to be invisible. I crave normal. But our life is “fish tank” with lots of outsiders looking in when we go into public settings.

But then I remember that maybe me having to care so intensely for my children is the “Jesus” that someone needs to see that day. Maybe someone needs to be reminded of the purity of love that exists in a Malachi smile. Or maybe me pushing my comfort zone will encourage others to do the same. To hide my boys and our life from the world would be a huge mistake. Even without speaking a word, their lives and unbreakable spirits are incredible.

In the end Malachi got his food and off to school he went- for an hour and a half, but still momma made good on her promise!

Mixed into our 7 appointments this week we also had youth pastor duties and soccer games/practices. In case you weren’t aware, Tennessee is HOT in August! Mid 90s hot. So for soccer games we have rigged up a nice tent for the boys and bring a generator and a high powered fan. They both really enjoy being outside in their bungalow and watching the game (and Mom and Dad in coaching action) with grandma.

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I am slowly trying to reclaim some of my out of control life. This is the absolute heaviest I have ever been. I am confident that the stress, lack of sleep, and inability to eat normal mealtimes has something to do with it, but nevertheless it is my job to take care of my body and make good choices. I have been trying to make time to run on the treadmill in our basement and have set up a nice little play station for the boys down there. We also have a local gym that is tiny but perfect for a 30 minute workout while Malachi is in school.  Baby steps.

Malachi had another exciting Saturday in his new soccer league! He was all smiles when we told him it was soccer day. And the smile on his face as he wheels around the court is heartwarming.

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Mondays are turning out to be pretty pleasant days for us. Malachi has started going to school for about 3 hours a day and I am able to take Levi to his therapies alone. It feels so odd to just have to one child to worry about…almost like I am forgetting something…such a weird feeling.

This Monday after Levi’s physical therapy I decided to run into the grocery for a handful of things we desperately needed. As I pushed Levi in his stroller we passed a nice elderly man who pointed at Levi and said “Wow, you really have your hands full!” I just laughed and smiled and said “I sure do!”. It seems self-seeking to one up his thought with a “This is nothing! I also have a special needs 5 year old in a wheelchair!”

Perspective is everything. And this world isn’t a competition of who has the hardest life. But sometimes our human minds play that silly game.

Every one of you has your own struggles, your own fears, your own unique and winding paths. Like the parable of the talents found in Matthew 25, each of us is entrusted by God with things “each according to his ability.”

But what happens when God sees more in your ability than you see within yourself?

1 Corinthians 10:13b says ” And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can endure it.”

I keep clinging to the word “endure” in that verse. What exactly does endure mean? I did what every American does and went to Google and here is what it gave me:

Endure= suffer something painful and difficult patiently

Ugh that doesn’t sound pleasant.

There are so many times in my life that I have been flabbergasted by God as I think to myself  “God thinks I can handle this, but I truly, sincerely don’t think that I can.” But I can attest to the fact that He has always given me strength and power to ENDURE it. To suffer something painful patiently while I trust in His timing and plan.

He hasn’t given me a painless life. My heart is bruised beyond recognition. I don’t recognize myself in the mirror. I am a product of enduring. It breaks you down and shows your ugliness. It shatters your pride. It takes you to your weary and skinned knees.

But to live a life of enduring has brought me closer to God than any comfort this world has to offer.

But that “way out” that is referenced in 1 Corinthians IS GOD! He gives His strength to the weary, He increases the power of the weak. He renews our strength.

With God to run to we can not only endure, but we can soar on wings like eagles. We can run and not grow weary.

So my challenge to you this week is to change your perspective. It is easy to play the game the world likes to play…”listen to how rough I have it.” I could have given that old man in the grocery store an earful. But instead let’s be proud of our bruises, of our scars, of our journey. Because it is those very things that show that we have ENDURED. And we have reached the other side of something so dark and painful with the help of Christ.

God bless,

Leah

 

Hummingbirds

We are fully recovered from our exciting week last week with our out of town family. I thought I would share a few sweet pictures from their visit.

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Malachi in particular loved sharing his house, toys, and brother with my family. Each morning he woke up so excited to see them again! As they left on Tuesday and we said our goodbyes I made sure to explain to him that they were going back to their home in Ohio. We waved goodbye from the driveway and came back into the house. After about 5 minutes, Malachi realized that they were truly gone and he started to cry.

I snatched him up and I let him cry on my shoulder as we talked about how much fun the week had been. He is such a sweet little boy. And he understands SO MUCH.

Flashing back to our last Cincinnati visit, the ENT and pulmonologist came up with a list of three things that needed to happen for Levi to continue avoiding the trach.

  1. Grow well
  2. Pass a sleep study
  3. Get sick safely

It was predicted that when Levi got his first respiratory infection that he would be in the ICU and back on the ventilator. His vocal cords are already close together, making it hard to breathe so if they swell larger you can imagine the impact that could have.

As I mentioned last week, Jake came down with strep and a viral infection and was sent to a hotel and a family members house from Friday to Tuesday night. I cleaned the house like a crazy lady, sanitizing and laundering everything I could but when Tuesday night rolled around I could tell that Levi was coming down with something. He cried and fussed all night long, clearly in pain. Tylenol helped but as the day went on I could tell that he had come down with a cold and a sore throat.

I was so anxious and kept him hooked to his pulse oximeter to measure his oxygen saturation. He did pretty well but had enough dips to warrant me turning up his oxygen to 1/2 liter (from 1/8). He is still having a few coughing fits here and there but sailed through his first sickness without an ICU stay! PRAISE THE LORD!

While I dealt with sick Levi I just assumed that Malachi would come down with the same thing. Malachi’s immune system is so compromised and he is very susceptible to sickness. When he gets sick we have to take him to the hospital sometimes daily (an hour there and an hour back) for chest x-rays as he develops pneumonia easily.

But as the days went on, Malachi was his happy and silly self. He figured out that if he screamed loudly that brother would wake up crying so that became his game of choice, giggling after each successful attempt. Since he was doing great I still took Malachi to his horse therapy Wednesday and even sent him to school for two hours on Thursday.

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Friday morning he woke up with a runny nose so I assumed he was officially catching the viral bug but with some allergy meds that went away. Just to play it safe I kept him home from school.

Here is a photo from his first big day in Kindergarten; he wasn’t in a picture taking mood so this is the best I could do:

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So let’s talk about the big meeting with Levi’s pulmonologist on Tuesday morning.

We met to talk about the results of the sleep study, and in my Leah way I tried desperately to read his body language as he entered the room. Unfortunately for me, this doc is hard to read so I started to get anxious.

He explained that he was hoping for some black and white answers but instead we got even more gray area. He said he had been talking at length via email with the Cincinnati ENT and pulmonoligst and they had come up with a plan. This part makes me a little anxious as I have always been the middle man between the two offices. I like the concept of each of them forming an opinion apart from the other and allowing me to hear all sides. It was kind of my way of getting a second opinion.

Good news: one of the biggest concerns from all doctors involved was Levi’s carbon dioxide retention. The sleep study showed that he is exchanging gases well when he sleeps and his CO2 is definitely in the safe range. Levi also was not having any severe apnea (stop breathing) spells.

Bad-ish news: Levi’s hypopnea (short and shallow breathing) is causing brain arousal moments at night which will keep him from getting quality sleep. This can affect his brain development and growth so it is concerning.

Take away: all docs want to do another sleep study and this time they will INCREASE his oxygen while he sleeps (up to 2 liters), hoping to find a happy number that will allow his brain to relax more.

Ugh. Another sleep study. The thought of it makes me nauseous. Just Ugh.

We are waiting on the scheduling department to call us with a time and date. Cincinnati mentioned us coming up there to do the study followed by another procedure to see how things look, but if we can avoid a trip there we will try. It would take them several days to read the results of the study, then several more to get us into the operating room and that is a complicated life for us Carrolls.

When the pulmonologist got ready to leave he did something he has never done….

He superstitiously knocked on the wall behind him and said very quietly through clenched teeth: “I think we still may be able to avoid the trach.” He still seems a little unsure but him verbally telling me that it was still a possibility to avoid it gave me some wind beneath my wings.

This week we will meet with Malachi’s surgeon to talk about his g-tube. It is another appointment that makes me sick to my stomach. I hate the idea but know it is time, especially with his big upcoming hip and foot surgery.

Back to some happy thoughts…

Malachi played in his first soccer game on Saturday and had a blast!

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He is always cautious and quirky his first time trying something new, and this was no exception. But at halftime when I asked him if he wanted to keep playing he exuberantly signed yes. Ten minutes later he told us with his signs that he was done and sat out for a bit. It is an overwhelming environment with all the noise and chaos, but he will adjust over the next few weeks. When I talked to him tonight about playing next week he giggled and signed YES.

Here is a fun video for you:

I have been a little emotionally fragile all week as I have been dealing with lots of sleepless nights, not a lot of help from Jake as he is still recovering, and a rapidly moving life with lots of places to be with lots of people counting on me. When I get into this fragile mode I know I am due for a pity party with lots of tears. It’s coming soon.

Tonight I attended a women’s event with the ladies from my church. It was a casual gathering at someone’s house but as I sat alone without any children in sight I started to get tight chested and struggled to breathe. I knew that I was physically okay but mentally I was absolutely freaking out. I was able to talk myself through it before causing a scene but that is the closest I have ever been to a panic attack, if that is even what it was. I am just not used to being without the boys and having that burden of responsibility lingering in my thoughts.

My control freak side has been in overdrive today adding to the buildup. For example, my sweet husband got Malachi ready for church this morning but I just couldn’t handle the mint green shirt, neon orange bib with sharks, and bright red socks. Nope, nope, and nope.

But more time at home this week has given me more time to create thoughts and dwell on them. This week’s thought focus has been on nature.

Recently I put up a hummingbird feeder right outside my living room window. Yes, random, I know. But prior to hanging the feeder I would be sitting on the couch with a kid and a hummingbird would appear in the window, staring directly at us. It was so odd to me and became so frequent that I figured a feeder would get some attention.

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And it most definitely drew a crowd within an hour of me hanging it up. I have been utterly fascinated by them as I watch their behavior. I watched as their wings moved so fast you couldn’t see them and I wondered how they never tire. I watched them fly up to the feeder for a quick sip, anxiously glancing around them each time, then seconds later darting off back into the sky. What an exhausting life that must be.

Then one day it hit me…I AM A HUMMINGBIRD! I live in a world where it is never safe to stop flapping my wings. I can never relax, never shut off, never rejuvenate. If there are moments to take that sip of water I pounce on them, but all while looking around anxiously waiting for something bad to happen because I let down my guard.

It is exhausting! Each morning Malachi wakes me up around 3am by having a seizure. I hear him over the baby monitor and rush in to get him upright before he vomits and aspirates it into his lungs. I take him into the living room to try to help him burp instead of vomit (the trigger for the seizure) all while listening closely to Levi’s alarms to make sure he doesn’t have a breathing episode that requires my attention. After an hour or two up with Malachi he ends up in the bed with me- I have to carefully roll him onto his side in such a way that his already dislocated hips won’t hurt and he can’t smother himself on the pillow. I use my face to prop his face in a safe place and I use my knee in between his knees to keep his legs and hips comfortable. He will usually sleep like this for another hour and a half, but that is never guaranteed- some nights last week I got a total of 3 hours sleep, others around 5-6.

When we wake up for the day I have to administer 6 doses of medications to the boys, prime and setup a new feeding pump bag for Levi, change medical tape and gauze, change diapers, change outfits, and take an hour to feed Malachi. It is a constant flurry of action. If I want to try to shower I have to take 5 trips into the bathroom, 3 with equipment and 2 with each boy. Then repeat the process to take them back out.

Then getting them into the car requires packed coolers, feeding pump bags with ice packs, emergency bags, oxygen tanks, gear, and at least three trips to get everyone and everything into the car.

I am a hummingbird y’all.

And as I went down this rabbit trail of the hummingbird being my spirit animal of sorts, I started thinking about the purpose of the hummingbird. Why did God create them? What unique and individual job do they do that another species of bird could not fulfill?

Then that led me to other things in nature, like butterflies and sloths. What in the world do those things do?

I started thinking about all of the odd things in nature that God saw fit to create…things that don’t seem to serve a single purpose aside from the fact they are pretty cool to look at. Things that you and I look at and think WHY?

And then it hit me…

My Malachi is one of those “things”. He is one of those children that will never become a “contributing member of society” in earthly terms. He will in fact deplete lots of money and resources during his time here on earth. But OH MY what a purpose he serves.

Hummingbirds, butterflies, sloths, bees, spiders…they all serve a unique and special purpose. We have learned over the years through scientific studies that without these things our ecosystem changes. Even if their purpose is a tiny and minute one, it still plays a huge part in the big picture of nature. God knew exactly what he was doing when he designed and created each one.

When we look at kids like Malachi we find ourselves digging to come up with their “purpose”. But like the little things in nature, each of these beautifully unique individuals brings something to this world that you couldn’t get any other way.

In what other ways do you get to see firsthand a love that is unconditional and limitless? In what other ways are we given an opportunity to see such a pure and innocent spirit? Malachi reminds us of so many things we often forget…things we take for granted.

Malachi’s life also gives you and I the rare chance to practice selflessness. To take care of another person’s needs, and to gain a new perspective of the things we have to be thankful for. He reminds us of God’s goodness, God’s mercy. His blessings and how he can make beauty from ashes.

While Malachi may not be able to physically do much in this life, his purpose is monumental.

Malachi’s life is a reflection of Christ. In him we see those characteristics we are all called by God to show to others…love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self control.

Malachi is here to teach us. And that is a pretty special purpose.

Sometimes when we hummingbird our way through life we forget to rest every now and then to note the beauty of our creation. The detail that God took in creating every unique aspect of each of us. And we forget that God has a calling on each of our lives.

There is something that each of us is MEANT to do in this world. There is something that cannot and will not function to its fullest potential without our presence. What are you here for? What special job did God design for you to do in your time here on earth?

You need to know that these blogs are written in the middle of the night, most of the time when I am utterly exhausted. I still feel called by God to write them each week, but I always laugh when I read them back. I can already see myself laughing tomorrow as I realize that I wrote about sloths. Why in the world that one came to mind is a mystery.

The verse I want to share is completely unrelated to my nature ramblings, but is one that I enjoyed reading again this week. I have a little green Bible that belonged to my grandpa who passed away in 2013. I love looking through the margins and seeing where he meticulously made marks with his pencil, noting things that stuck out to him. The Bible is the Message translation, so I don’t use it too often for studying but I do like how it worded this scripture.

Colossians 3:1-2 “So if you’re serious about living this new resurrection life with Christ, act like it. Pursue the things over which Christ presides. Don’t shuffle along, eyes to the ground, absorbed with the things right in front of you. Look up, and be alert to what is going on around Christ- that is where the action is. See things from His perspective.”

Please pray for the boys this week as we tackle a list of appointments. Pray that Levi continues to heal and that his vocal cords suddenly awaken. Pray that Malachi’s ligaments and tendons stop receiving wrong messages from his brain and start to loosen back to normal. Pray that his seizures stop and that he can be comfortable and at peace throughout his day. Pray that both of the boys receive supernatural healings and that Jake and I are each given an extra dose of supernatural wisdom in knowing how to care for such precious boys.

And pray that they can sleep. That God can allow each of our hummingbird wings to stop moving long enough for healing and brain growth.

Thank you for choosing to be a part of our journey.

God bless,

Leah

When Germs Attack

The first sickness of the school year swooped in quickly this year; Jake was diagnosed with strep on Friday afternoon. YIKES! He called to tell me his throat felt funny and I immediately got out our rubber gloves and hospital grade sanitizer and started playing the “What would Jake do” game. In this game I re-enact a typical day for Jake and sanitize every possible thing he may have touched, coughed on, or infected. There are things most of you typical people wouldn’t even think of…car door handles, seat belt buttons, hangers in the closet, phone chargers…the whole process takes several hours.

And then we made our sickness plan. Strep throat can knock Malachi down pretty quickly and Levi has yet to be sick but we are told to expect an ICU stay and to likely be put on the ventilator. So I did the only thing that made sense…I packed him a bag and sent him to a hotel for the weekend. He has been on antibiotics for 3 days but we just want to be extra careful.

We just so happened to be having family from Ohio come and stay with us for the weekend too. We called and explained the situation and they weren’t deterred by the possibility of being in a strep exposed house. We have been having a wonderful weekend together and hopefully Jake will feel well enough to join us again tomorrow. So far the boys and I have remained healthy!

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Leading up to our strep attack, we had a jam packed week of appointments. We started off with physical therapy for Levi, hippotherapy for Malachi, oxygen tank deliveries, pediatrician wellness checks, 4 trips to the pharmacy, insurance calls, and GI appointments for each boy…I also successfully navigated a Target shopping trip and a grocery store run with the wheelchair stroller and pulling a cart! Like a boss. There were so many days this week I felt like high-fiving myself…we are figuring this whole thing out.

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Levi is 15 pounds 6 ounces and getting way fewer calories than recommended so we have increased his volume. He is fed using a pump that continuously (for 18 hours a day) flows formula through his g-tube so increasing his food is as simple as pushing a few buttons on his pump. BUT we do have to make sure his belly can tolerate the change and stretch accordingly. We are easing into the increase and he has not handled it well so far with lots of spitting up.

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Malachi is still at 25 pounds, but looks healthier. We initiated the dreaded g-tube talk and will be going to speak with the surgeon and set a date in a few weeks. We would like to get the tube placed so it can be used to administer medications for his big upcoming hip/feet surgery in November. We are also hoping that it will help with seizure management as most of his seizures are caused by pressure in his belly. If we have a way to vent that air out it may help in the long run.

I scheduled an appointment this week with Levi’s pediatrician after we noticed that one of his eyes has been getting a little wonky. It looks like we are dealing with some form of strabismus so we will now be adding pediatric ophthalmologist to the list of specialists for Levi. That’s good because we have been a little bored lately with not much else going on in our lives…haha. Hope you can sense the sarcasm through the keyboard.

He has been hilarious this week. I woke up yesterday morning to this little goofball:

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I got a call this week from the pulmonologist’s office that went like this: “Hello sweetie, I am looking for the parent of Levi Carroll. Dr. _________ has received his sleep study results and asked if you could come in on Tuesday at 8:45 to discuss the results?”

I have played that conversation over and over again in my head (especially the “sweetie” comment) trying to decide if that is a good thing, a bad thing, or a protocol thing. And then I “Leah”ed it and got panicky. I won’t divulge my sources but by the end of the day I got a copy of the sleep study and did my best to interpret the results using friends, google, and optimism. To my untrained eye it didn’t look horrendous. But we will find out how he thinks we need to proceed on Tuesday. I will give you more details about the results next week.

Here is a sweet video of Levi’s new syllables:

Malachi sat next to Levi at lunch this week and kept reaching his hand out to find Levi’s. Watching their special bond melts my heart so much. If I tell Malachi that Levi is watching him he will puff his chest out and do whatever his is doing ten times more exuberantly. We always talk to him about how he is setting such a good example for his baby brother and teaching him things (like how to drink a bottle like a big boy, etc).

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I have had some emotional moments this week and they have really made me think. Friday night I was sitting on the couch holding my beautiful son Malachi and felt so drawn to pray over him. I told Malachi that we were going to say a prayer to God and his eyes widened with excitement. He LOVES when we pray. I spoke the words out loud and as I declared “Lord, heal him and make him whole” I looked at his face, staring in anticipation back at me, and I was struck with a pang of guilt.

As I have told you before, Malachi’s receptive language is pretty phenomenal. He understands so much more than we realize. And as I looked at his sweet face I started to wonder what he thought of my words to God. I thought about how confused he must be to hear mommy ask God to make him whole. I could hear him saying “Mommy, am I broken? Mommy, am I sick?” and I just got so emotional.

My petitions and pleas turned into prayers of praise as I thanked God for all of the beautiful things about Malachi. He listened and clung to each word.

This is the only life and body that Malachi has ever known. To him this is his normal. I would never want him to feel “less than” or imperfect.

So it started making me question my prayers over him and Levi. Should I be praying to God that they be made whole? And I feel in my heart that I absolutely should be.

But I also feel in my heart that God desires us to find beauty in all that we have been given…even the things that we never expected. Even the things that don’t come in beautiful and predictable packages.

While I desire for Malachi and Levi to be made whole, I am overwhelmingly thankful for the favor God has given us through them. We have the privilege to see the joy of the Lord reflected on our 5 year old sons face each and every day. We have witnessed firsthand the provisional hands of God meeting our needs before they become burdens. God has gifted us supernatural measures of faith that has carried us through some tough news and dark times.

God has given my non-verbal (for now) sons a voice, an audience, and a mission. So while I desire SO GREATLY that God hears and answers my prayers that they be made whole, I also recognize and trust that they are perfectly imperfect for this exact moment in time for a reason. God works through our imperfections, so we will call our family blessed that we have an abundance of those for Him to perfect!

Much love,

Leah

 

Studying Sleep

A few feel good notes before we jump into the sleep study summary! First of all, I have been really trying to focus on teaching Malachi things lately to figure out what he is capable of retaining. Time and time again he reminds me that he is not only ready and willing, but very capable of learning! This week we focused on being able to determine someone’s gender. I would give him the name of someone he knew and he would tell me if that person was a boy or a girl using his switch. It only took about 5 minutes for him to get it and he is a about 99% accurate! I took a video for you all:

Levi is a wild man. He has mastered the art of rolling which is such great news. But the wires make life a bit more challenging. Within seconds of me putting him on the ground to play he usually has one or both of his tubes wrapped around his neck. He also managed to pull the IV tower down on himself this week, so that is a new challenge added to the list. A very kind friend donated a feeding pump backpack to us so we may have to give it a try to see if we can eliminate one of those wires being accessible.

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Levi is also learning some new syllables which is such a joy to hear. The “D” and the “G” have been his favorites this week.

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Levi loves to put things in his mouth, which is great for getting rid of any oral aversions he has. This week while the boys were playing Malachi got his hand close to Levi’s mouth and he decided to borrow his thumb for a bit. Malachi thought it was funny and kept sticking his thumb in Levi’s mouth. What a great fine motor therapy exercise for Malachi haha.

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Jake and I had the rare opportunity to go on a date this week! Malachi and Levi’s physical therapist offered to watch the boys so we could go out to dinner, and who is more qualified than someone that spends 1.5 hours with them each week? It was the oddest feeling for us to be away from them, but it definitely was refreshing to have some time for us.

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And one more silly video for you:

On to the sleep study…

The closer we got to the scheduled appointment the more I started to realize the misery that was about to take place and that feeling of doom started looming over me. SOOOOO much of our lives is a mental game. My mind is always a battlefield; I have to continually remind myself to stay positive and just get it over with. So off to the hospital Levi and I went.

Our scheduled time was right around a shift change so the walk in was like a mini family reunion as we stopped and had conversations with doctors, nurse practitioners, and nurses who have taken care of one or both of the boys in the past. Another mental game for me….part of me loves that we know all these wonderful, life saving people and the other part of me is so sad that my boys have to know this “world”. That our paths have to cross with so many people in the medical field. It is hard to explain.

The mental game continued as I checked us in for the appointment. Here’s a helpful little tid bit for you…if you go to the hospital anytime after 5, everyone is required to check in through the same desk inside the emergency room. Children with the flu, bubonic plague, sleep studies…all sharing the same pens and counter space. We learned this lesson a few years back and it made me so upset that I called the hospital board and pleaded our case. I was shocked when I checked in two weeks later and they had actually listened to my worries and made a change. But unfortunately we were back inside sick land with a healthy child. These moments make me so anxious. And of course there was a computer error while we were checking in so the process took 20 loooong minutes, still sandwiched between some pretty sick looking children.

We were escorted up to the floor and headed towards our room. The mental game here went into overtime as we passed rooms I have stayed with Malachi in the past. I passed the ICU double doors that Malachi spent significant time in when he got the flu and pneumonia around his first birthday. I remember having to take a big deep breath each time before I walked through them. I passed the room we stayed in for 7 long days when Malachi developed infantile spasms, the room after heart surgery, the room for his overnight EEG….

My mind and emotions were at war. Then I remembered when Malachi was in some of these rooms he was one sick little boy, and here I was pushing my healthy yet fragile child through the hallways surrounded by very sick kids. I could feel my stability slipping away.

We finally got to our room at the end of the hallway and started the process for the sleep study. There were some miscommunications about what this study was to focus on…let me try to explain that a bit:

Neurology in Chattanooga: there is only one doctor in the hospital certified to administer and analyze sleep studies, and he is a neurologist. We are not a patient of this doctor nor have we ever met him.

Pulmonology in Chattanooga: this doctor is the one who actually ordered the sleep study. He is our local connection in case anything goes wrong with Levi and knows him well. We really trust this guy.

ENT in Cincinnati: they are VERY curious about the results of this study and will be using the information to determine the need for a trach. One of the big things they are wanting to analyze is his carbon dioxide retention. The results will be forwarded to them.

That information may help you understand our dilemma a bit better.

So the tech came in and explained that the neurologist (the one who has never met Levi) decided that this sleep study was to be done with Levi completely off of oxygen. This bothered me, as the goal right now is NOT to get Levi off of oxygen. We are wanting to see if the interventions we are doing now are enough for Levi to breathe safely.

In my mind, we were setting him up for failure/trach if we are removing all interventions and expecting him to pass. We KNOW his vocal cords are paralyzed and therefore are an obstruction to his airway. We KNOW when he is not on oxygen that his saturation dips down. We don’t need to hook him to an insane amount of wires and spend the night in the hospital to prove that. My biggest fear is that this test would be administered incorrectly (through the eyes of ENT and Pulmonology) and we would have to repeat this darn thing all over again. So I did the annoying thing and told them we would not proceed until they spoke directly with our pulmonologist.

The tech made some phone calls and after speaking with pulmonology they decided to do a split study, three hours off oxygen (or as long as he could manage it safely) and three hours on. That seemed more reasonable and it came from someone we know so I agreed.

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It took almost an hour to get all the wires and leads on Levi who was a crying mess. She made me take his oxygen off during this time and I was SO WORRIED that he was using all of his reserve and would be starting the study with an already exhausted respiratory system. Once I was cleared to get my hands on him I strapped his oxygen back on and told the tech that he needed to recover before we would start the test.

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Levi made it a whopping 45 minutes off oxygen and during that time he had 27 spells of hypopnea (slow and shallow breathing with a dip of more than 3% points in a short period of time…like 94% to 91%). Summary: that is not good. While he didn’t have any apnea (stop breathing) spells, this is still not good for his heart and his brain development. His oxygen saturation OFF oxygen hung around 93.

The oxygen went back on for the rest of the study and with that tiny 1/8 liter intervention he stayed at 98-99% for his oxygen saturation. We won’t get the results back for a few weeks but I studied that computer screen/numbers pretty intensely and he wasn’t having more than a handful of hypopnea spells each hour. The average was reading 10/hour by the time we left but that included the insane 27 recorded when he was off oxygen so I really don’t know what to think. I did not see any true apnea spells, but that doesn’t mean they didn’t happen.

And the BEST part is that his carbon dioxide retention was normal!! He stayed in the 35-45 range consistently. Anything above 50 is a little dangerous.

Levi was miserable. It was the most miserable I have seen him since the NICU and it broke my heart a bit. I couldn’t really hold him with all the leads and wires, and he was just so uncomfortable. He woke up after an hour of sleep and the crying started all over again. At 2am he projectile vomited all over himself and when I called the tech to see what we could do about changing him she said that there was nothing we could do unless we wanted to start the study all over again. He was wire/glue covered, puke covered, and extremely uncomfortable.

I guess we will find out in a few weeks what the next steps will be. I am not really confident either direction, and still a little anxious. I am not quite sure who will give us the results and what this will mean for Levi. We were both very happy at 5am when we got to leave.

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We got home just in time for Jake to help with a bath and glue removal before he headed off to work for his first day back.

The rest of our week was a busy one with a youth group back to school party, an all day soccer tournament, and just plain ol’ life. I attempted a Walmart trip with the boys to get some food for Malachi and that didn’t last long. Malachi had a large meltdown in the middle of the pretzel aisle that he just couldn’t seem to recover from so we headed toward the checkout. He got a balloon out of it so he was happy haha.

So let’s talk about expectations. They really are getting me in trouble these days. I EXPECT Jake to get something done and it doesn’t happen the way I envisioned. I EXPECT Malachi to be able to eat his bottle in a specified amount of time. I EXPECT doctor appointments to be a certain number of hours. And when those expectations aren’t met I get so incredibly mad.

Maybe it is a control issue. Maybe it is just my personality. But my goodness do I have a load of expectations.

One of the things I have always been big on is the Golden Rule: Do unto others as you would have them do unto you. I remember learning the lesson when I was younger that this rule isn’t something that everyone follows and being so disappointed.

So are expectations good, bad, neither, both? I honestly still don’t know. But I do know that the Christian life is about surrendering. It is about releasing things- BIG things and small things- to God. And for me personally, that means my expectations for how I think God should intervene and act in my life need to stop.

Because with expectations comes disappointments, and that is where sin can easily slide in. I don’t know about you, but disappointment brews inside of me. I stew on it until it morphs into something ugly, like anger or bitterness towards someone or something.

Are expectations bad? No. Is disappointment a sin? No. But our reactions to those outcomes are what gets our mind into trouble. The Bible tells us if you hand causes you to sin then cut it off! Obviously that is not meant literally. But the concept certainly applies here. Expectations cause me to sin with my angry, bitter heart so I need to cut them off!

So for this week I am focusing my prayers and attention on simply trusting that God has my family’s future already drawn out, and undoubtedly it will bring him glory. It may lead to some earthly suffering- physically, mentally, and emotionally- but in the end His name will be glorified.

My only expectations this week will be ones promised to me in scripture. I have been talking to Malachi this week about the new body that God will have for him when he gets to heaven. I have talked to him about all of the fun things he and I will do, and how we will sing praises to God together. He smiles from ear to ear when we talk about God. What a beautiful and glorious pain free life that will be for both of my sons.

2 Corinthians 5: 2-5, 9

We grow weary in our present bodies, and we long to put on our heavenly bodies like new clothing. For we will put on heavenly bodies; we will not be spirits without bodies. While we live in these earthly bodies, we groan and sigh, but it’s not that we want to die and get rid of these bodies that clothe us. Rather, we want to put on our new bodies so that these dying bodies will be swallowed up by life. God himself has prepared us for this, and as a guarantee he has given us his Holy Spirit.

So whether we are here in this body or away from this body, our goal is to please him.

So this week, I will choose to focus less on expectations and more on pleasing the Lord. Isn’t that the way it should be?

God bless,

Leah

This Is The Way

This week is a big week for Levi as he will undergo his sleep study in Chattanooga. To recap, the ENT surgeons and the pulmonologist are concerned that Levi may be retaining too much carbon dioxide and may be having too many apnea spells while he sleeps. If this sleep study proves these things to be true the only option left on the table to is to trach him.

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I am trying to think positively about the test, praying that he will knock it out of the park and wow the surgeons with the results. He is hooked to a pulse oximeter every night which reports his heart rate and his oxygen saturation but the numbers are the average over the course of 10 seconds so we can’t find a whole lot of comfort in that. The sleep study will give us real time information.

Clinically Levi is doing wonderfully. He is breathing quieter than ever before and his retractions are now very mild. He is mastering the art of rolling which is challenging for all of us as he wraps the tubes around himself and sometimes his neck. We have to make sure to be close and ready to unwrap him whenever needed. He is on the verge of crawling which will make things even more interesting. And he is growing!

His sense of humor is blossoming by the day and he does things just to be silly. He loves to make us laugh. And yes, he still looks just like his daddy; here is the picture to prove it:

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Malachi worked hard at therapies this week. We tried implementing his communication switch on the horse but he just couldn’t seem to make the connection when we tried it. We may try again tomorrow just to see if it was a fluke. He has different faces for different things, and I was able to capture his concentration face while he was working hard at swim therapy:

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He is getting more opinionated which is truthfully really fun to see. We try to give him options with everything he does, as we would want the same treatment, and he has been very clear with his responses. Last night I asked him who he would like to put him to bed, momma or daddy and he very quickly and clearly shouted “DAD”. He loves his daddy.

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Speaking of Jake, this is the week he goes back to work. Boo.

We also got word this week that Malachi’s teacher from last year took a job in another county. This was really hard to hear as we felt very confident leaving Malachi with her each day. The nurse in the classroom will be returning so that is a plus but we will need to train the new teacher on all of his quirks before we will feel comfortable leaving him at school for a few hours a day.

The new teacher seems very kind and sincerely caring and even took the time to come over this week and spend a few hours with Malachi to get to know him. That has made both Jake and I feel much better.

And his former teacher brought her son over for a play date with Malachi. He really enjoyed getting to share his toys and swing with his buddy. At one point the boy got a little too rough (in a totally age appropriate and innocent way) with Malachi and my heart smiled when Malachi signed “NO” with his mouth…way to stick up for yourself! Here is a video of them in his swing:

 

I called the director of special education in our county to talk about student teacher ratios and it sounds like they aren’t sure how many kids they will get in his CDC room this year. If I had my way, Malachi would have a single paraprofessional assigned to him for safety/epilepsy reasons. But the director continues to tell me that she doesn’t feel that it is necessary and that the classroom teachers can handle all the children including Malachi without assigning him a 1 on 1. I am not convinced. We will be keeping Malachi home for the first few weeks until we can get a better idea of what to expect.

It has been a long time since I have actually considered calling 9-1-1 but last night I was close to calling. We went to a local even for families with exceptional children- something I had been looking forward to for several weeks. I am not sure what exactly the issue was- the heat, the noise, the excitement…

But Malachi went into a big seizure. He has 6-8 seizures a day right now but they are all short and predictable. Yes, this is a lot but Malachi has something called Intractable Epilepsy and we just can’t seem to get them under control. We could continue to try new medications or increase his current two but when we do he is nearly sedated and has no personality. We have to find that delicate balance of keeping him safe and allowing him to “live life” with some quality.

Last night’s first big seizure lasted about 4 minutes and his whole body was convulsing. We have rescue medication on hand if they last longer than 5 minutes but when we give him that we have to call 9-1-1 because it can relax him so much that he stops breathing. It isn’t an ideal fix so we avoid it at all costs. But as we passed the 4 minute mark I started to consider it. He finally came out of it and projectile vomited as he always does with the large ones.

Within about 20 minutes he went into another large one and that was our signal that it was time to go. On the walk to the car he had another. Then another on the ride home. And another before bed- all large and scary.

This was a photo from the group’s album that was posted today. You can just tell how wiped out Malachi was.

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Poor little Malachi was exhausted last night and went to bed earlier than his norm. He was up and down all night but we thought we were through the large seizures. Today he had a decent day, but tonight he just had 3 more large seizures. Tonight they scared him and when he came out of each one he cried; it just breaks my heart to see him struggle. We aren’t sure if they are still related to yesterday’s incident or something larger like a shunt malfunction. We will be watching him closely.

So again, back to my school conversation, if I as his mother am nervous during these seizures what will happen at school when a teacher who has 15 other kids in the classroom do? I want to make sure he is safe. Period. Or what if there is a fire in the school? If the ratio is 5 student:1 teacher, which kids will she get out of the building first? Is it really safe to expect a CDC teacher to get 5 of the students with varying disabilities out efficiently?

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This week I took a “Leah Day”….well a “Leah 3 Hours”. I went alone to town to run errands. I really lived it up with a trip to get the oil changed, the bank, and to get milk for the kids. It felt so strange but wonderful to park in a non-handicap spot and walk from far out into the store. Aside from the handicap ramp on the van, I was just like everyone else for those three hours. Even the action of getting out of the car and immediately walking away from it was such a strange sensation for me- we are used to a 5 minute unload process for wheelchairs, strollers, and kids wherever we go. And the stares. I was anonymous again and it refreshed me a bit.

And to add to the chaos- on Friday I took some of our youth group to the trampoline park and mall food court for one final summer outing. It is always hard to transition between taking care of the boys to watching 20 teenagers in a public place. Lots of counting heads and empty threats haha. When I went to pay for my lunch my card was rejected. I was totally embarrassed but knew that there were funds in the account so I called the bank. My debit card information had been stolen and the person was trying to use my card on multiple websites and it flagged the fraud department (praise God). Always an adventure in Carroll land!

I did a Facebook post this week about this picture that I figured I would share it with you for the devotional this week:

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“Although the Lord gives you the bread of adversity and the water of affliction, your Teacher will be hidden no more; with your own eyes you will see your Teacher. Whether you turn to the right or to the left, your ears will hear a voice behind you, saying ‘This is the way; walk in it.’ “ Isaiah 30:20-21

Earlier today I caught myself in a moment of mourning. As I prepared to give Levi a bath I flashed back to conversations with Jake when I was pregnant. We talked about how Levi would be the “easy” one. After Malachi’s rough start we were so thankful that God blessed us with a second son.

We talked about how different this child would be…how it would feel to take him home after just a few days in the hospital instead of the 4 months big brother took growing and healing before we got to bring him home.

We talked about how odd it would feel to have a healthy child that didn’t have to be at the doctor all the time. A child that wouldn’t have to go through the pain of surgery after surgery to try to fix brokenness.

We talked about how this child would get to witness the testimony of his medically complex brother and how it would shape him to be a caring and special man. We never dreamed that he would have a testimony all of his own before the age of 1.

Levi was supposed to be easy. He was supposed to be healthy. He was supposed to be “normal”. Instead, Levi has surpassed Malachi’s NICU stay and has blown past his surgery count.

And as I prepared his bath this morning and spent 20 minutes gathering his medical equipment- things he literally can’t live without- the pain of unmet expectations hit me hard.

This verse talks about the bread of adversity and the water of affliction. And as I read that line I heard my heart pleading “YES Lord. Why does our bread and water taste so different than everyone else’s? Why can’t we get the manna you send to others? Why do we have to be…well, different?” The pain of seeing my children suffer is something I can’t put into words.

But then comes the next line. The line that reminds me that God’s plan is greater than the dreams I had for normal.

“This is the way; walk in it.”

So simple. So direct. So eye-opening.

We aren’t supposed to have “expectations” for God, with the exception of expecting God to move in our lives. And oh boy, He sure does move in the Carroll family.

So as I look at this picture- this photo that represents my unmet expectations and my shattered dreams…again- I hear the voice of my God saying “This is the way; walk in it.” And I put my unique and complicated child into that tub and reminded myself that each time we take a step of faith and rely on God to get us through the next 60 seconds we bring glory to His name.

And I continue to believe that God’s dreams and plans for my children is so much greater than my pleas for normalcy.

 

As I always tend to do, I find myself munching on some big concepts lately. I need to process my thoughts a whole lot more before I dig into them with you all…but I am close! But here is a teaser question for you to think on…

Are expectations good, bad, both, or neither? 

Please be in prayer over the boys this week, each for their own unique issues. Levi and I will be admitted Tuesday evening at 6pm for his sleep study and prayers during that afternoon and evening would be appreciated if you think of us. We are told to expect to be finished at 6am.

And please continue to pray for wisdom for Jake and I. We need more than simple generic parental guidance from God…we need Him to guide us into the right BIG decisions that affect the lifelong outcomes for our boys. The weight of these decisions is such a big load to carry….good thing I serve a GREAT BIG GOD who can help us carry that load and strengthen our shoulders in a supernatural way.

Much love

Leah

 

 

Identity Crisis

Ten days. There are just ten more days until Jake goes back to school and we are back to increased caffeine intake requirements and a very tired momma. Routine changes are difficult for our family, but like we always do we will figure it out.

Malachi has been magnetized to Levi these days, rolling until he gets to him. It has been fun to watch him engage his muscles to go somewhere! I guess he just needed the right motivation.

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For the last few days we have had Jake’s family in town for a visit and we packed all kinds of adventure in- playgrounds, swimming, the aquarium, soccer games, golfing.

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But the best part of all was getting to spend time around my nieces and nephews. Jake and I are always completely fascinated by “typical” children. We could just sit and watch them for hours as they process the world and interact with it. And Malachi was in heaven listening to all their sweet little voices. There are now 7 cousins ages 6 and under on Jake’s side and when they are all together it is like music to his ears.

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As you can see from the picture above, the aquarium was a lot for little Levi to take in.

The cousins were obsessed with Levi, and he was just as obsessed with them.

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Prior to our guests coming into town we tackled 7 appointments this week. I also officially scheduled Malachi’s feet and hip surgery for the week of Thanksgiving, hoping to get it done while Jake is off work and also hoping the follow up appointment will hit over his Christmas break. If Levi’s upcoming study goes well we will won’t have to go back to Cincinnati until December so it will be nice to have one surgery done before the next kid is due for his.

Malachi had an exceptionally great week at swim therapy!

I took a video for you:

He hasn’t been doing so well on the horse, shutting down quickly and not wanting to do his therapy exercises. Just by watching him I can tell he is getting a little bored with it so tomorrow we are going to take his communication switch and see if that helps any.

Levi is continuing to work on tastes and small bites of food, and that has really motivated Malachi to eat more bites. We have been making sure to explain to him that he gets “big boy bites” and Levi gets “baby bites” and he is totally buying into that concept. He wants WHATEVER I am eating and tried so many foods this week with success. He even ate half of a popsicle which he would never attempt before.

Today at lunch I ordered him some applesauce and he continued to tell me he wanted more. After he ate half the bowl he signed to me that he was done so I offered some to baby Levi. When Malachi heard that he immediately signed NO. I asked him if he would share his bites with Levi and again he adamantly told me NO again. When I asked Malachi if he wanted more he said NO. He just genuinely did not want to share with brother!

I know this may sound odd but these little glimpses of brother jealousy make me so happy. And if you are wondering- Levi did in fact get the applesauce. While we want to encourage Malachi to communicate we also want him to understand that he has to share with his brother haha.

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Even more interesting is that Malachi was so happy and excited to share his toys with his cousins all weekend! Everytime we asked him if they could play with _______ he would sign YES. I guess it is just a brother thing.

As I mentioned before we took the crew to the aquarium. In special needs parent world this is a bigger deal than just a simple outing with the kids. Before we go to a place like this I have to mentally prepare for the day, knowing that I am choosing to take them to a place where we will be gawked at. While it shouldn’t be that way, it inevitably is as many children have never seen a boy in a wheelchair.

Malachi can see much better in the low light of the aquarium. We can always tell when he sees something for the first time because it brings him so much joy!

And with each gawking child comes a parent who is scrambling, totally unsure of what to say to get their kid to stop staring. We truly want Malachi to live as normal of a life as possible, so we just acknowledge how it is going to be and prepare to be “seen”. It is always a reminder to me though about how we (speaking of you and I collectively) choose how we react to things. I can choose to be bitter, angry, or hateful to these children as they point and gawk. Or I can choose to see innocence and remember that these children live in a world untouched by disabilities…and isn’t that a good thing? I would have been exactly like these children when I was younger.

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But we choose how to react to life. All facets of it…the good, the bad, the ugly. Every reactions is a choice.

This morning at church we had a bluegrass band come to play for us. Both Malachi and Levi were inspired by the music and were WILD. Malachi was dancing around in his own unique way and Levi was soaking it all in with wild and excited eyes. At the end of the service the pastor prayed and as he was praying Malachi started yelling things out. I quickly shushed him and said quietly in his ear “We are praying to Jesus” and then I immediately felt regret for shushing him.

Malachi is so aware, and has always been very intruiged by prayer. I try to narrate as much of life as I can to him so he can tell what is happening around him, and I always make sure that he knows when we pray that we are talking to God. His whole body language changes when someone prays and he sits upright, eagerly clinging to the words.

And as I heard him yell this morning during prayer I can’t help but wonder if Malachi was trying to talk to God. And how that sweet little voice must have brought so much joy to God’s ears.

Here is a video of Malachi and daddy playing on the playground this week:

I have been trying to decide on a good devotional thought for you all tonight, but the truth is I myself have been struggling this week. I can’t seem to stop thinking about how my identity has transitioned over the last few years and I am subconsciously mourning over it.

I started playing soccer in middle school and it became such a huge part of my life. I love the sport so much! When I started teaching in 2008 I began coaching and for the last 10 years it has remained a big part of my identity. This week we organized our annual “community game”- we ask several adults in the community to play on a team against our soccer girls. It is always a lot of fun to watch and it gives the girls a chance to play together before the season begins.

Last year I was pregnant and couldn’t play and I was SO looking forward to this year’s game. Game day rolled around and I geared up, ready to play the sport I love so much. But as the game went on I found that I was distracted by my children (who were being supervised and doing great with family on the sidelines). And things just felt so…different…

It really bothered me. And as I processed the “why” I realized that through the last five years so many things that I thought were my identity were disappearing.

Friend of _________. And now we haven’t talked in months. I did a lesson with the youth girls on friendship two weeks ago and as I talked to them about the topic I realized that I don’t have a whole lot of close friends. I have lots of acquaintances and I can tell you the names of the people I pass on the road in our tiny town but I don’t really have any close friendships right now…life just doesn’t allow time for those.

Avid book reader. And haven’t cracked a cover open in years. I have two books on my nightstand that I am so incredibly eager to read, but can’t justify spending the one hour of free time I might get each day throughout the summer to read a book. Most of those chunks of free time are spent napping or showering.

Special education teacher. But haven’t been in a classroom setting since the week Malachi was born.

Athlete. And haven’t worked out since pre-pregnancy with Levi. I had finally worked my schedule to allow some trips to the gym with Malachi and two weeks after I bought the gym membership I became pregnant with Levi.

Dog lover. And our sweet Boomer is still living with Jake’s parents in Ohio as we aren’t comfortable with an animal being around all of Levi’s cords. Malachi misses him as much as I do!

There are so many things that have always been my “identity”…and they are just simply gone. And for some reason this week I have been really struggling with that.

And as I always tend to do- the more I sat on the thoughts the more my rational side started to take over. I was reminded that even though my roles have been changing and my identity has morphed dramatically over the years there is peace knowing that one thing has never changed:

I am and always will be the daughter of a King.

And when I remember this and then look at these things I am mourning over they start to seem almost silly. My identity needs to be found in Christ and in Christ alone. And through that life an even more important identity will be established as I become an image bearer of Christ. And THAT should be the vein that all of the other adjectives I strive for should flow through.

When we focus on rooting our identity in Christ alone we allow ourselves to be used by God and not try to put Him in a box. God can use us to do so many great things- things we never dreamed we would find ourselves doing- if we surrender our ideals to Him. If we allow Him to guide us step by step through life then it doesn’t matter what tasks you are or aren’t doing. All that matters is that you are bringing the light of God to whatever situation He has brought you to.

John 15:16 “You did not choose me, but I chose you and appointed you that you should go and bear fruit and that your fruit should abide, so that whatever you ask the Father in my name, He may give it to you.”

So I guess the lesson for me this week is that I need to find contentment in my job role of being “Fruit Bearer”. I have been chosen and appointed by God for this life that He has given me and that should be all I need to hear!

Identity crisis over for now. So my tiny violin can go back into it’s case for a bit haha.

Please be in prayer this week for Levi’s vocal cords to wake up and for Malachi’s brain to reconnect. Pray that God chooses this week to be the one where we see miracles for both boys. I continue to speak “Ephphatha” over Levi’s airways and speak restoration and wholeness over his brain- will you join me in that prayer?

And may God speak to you this week,

Leah

 

God’s Handiwork

It was a beautifully slow week in our household so we spent most of it chipping away at our never ending to do list. As far as appointments go we only had therapies for the kids- horse therapy, aquatics therapy, and physical therapy. All local and manageable.

There are some hidden challenges to being a special needs parent that most people may not think about, and one of them is the mental anguish of the calendar. It is filled with therapies, specialist appointments, and surgeries. These appointments loom over me- I always have to keep them in the back of my mind as they dictate everything else we want to plan. It feels so good to mark them off the list…but that is where the mental anguish comes in. Each time we finish an appointment we immediately have to schedule the next one so they are never really “crossed off the list”. They never really end. Right now we are scheduled out through December.

So since we have a slow blog day let me take some time to tell you about Malachi. He is changing. I don’t know what wonderful God is doing in his little brain but we are connecting in a whole new way. When people see Malachi there are quick assumptions made like he does not know what is going on (after all, he is legally blind), he can’t understand what you are saying, he is just a shell of a child. But Malachi is so much more than a shell- he is a 5 year old boy that is trapped by a body that doesn’t function like it should.

Malachi has opinions. Lots and lots of them. He has likes and dislikes and will let you know them very clearly if you know what to watch for. He loves to communicate and gets SO excited when you understand his communication signs and listen to him. He craves being talked to like a typical boy and understands so much more than you would imagine. He wants to be in control of things, which is tough with a body like his. So when he does get that rare chance he knows he is BIG stuff.

Malachi wants to know where we are going next and who he will get to see. He wants details (just like his momma). He has an impeccable memory and routines make his exceptionally happy. His imagination lately has been so wild- particularly enjoying pretending to be dinosaurs, puppy dogs, and angry like Llama Llama Red Pajama.

Malachi is stubborn, just like his momma. He will do things simply because I told him not to. And he will smile sheepishly as he does it. But he is also incredibly sensitive and has the saddest crying face you will ever see. He gets in trouble a lot these days and has to be corrected often, which truly hurts his feelings. He also gets bored, and will do bad things to get your attention- like throwing himself out of his chair.

Malachi loves Levi. I know I say that a lot but the love there is so special and deep. This week I have been trying hard to give him the same big brother responsibilities a typical kid would get. I let Malachi help get Levi ready for the day, piling wipes, a diaper, and an outfit on his lap. As I change Levi I ask Malachi to hand me the ______ and he will slide them off of his lap and to me proudly. He loves to be a big helper and will puff his chest out proudly when I tell him what a good job he did helping. Here is a video:

God is healing Malachi. It isn’t in a grandiose and obvious way, but I see it. His mind is so sharp. He has been so sweet to me lately with lots of big hugs where he squeezes me as tight as he can and lots of impromptu kisses.

His favorite toys right now are his cars and blocks. He strategically will knock them off his tray to make them go BOOM on the floor. He thinks it is hilariously destructive and sometimes it wakes up little brother, which is an added bonus. And he is still the most joyful child I know, laughing at the simplest things and noises.

Oh my goodness how I love him! But I have to be honest…he breaks my heart each and every day. I watch him as he listens to his favorite cartoon shows as the characters tell the audience to do something, like pat your hands on your lap. And I see his little brain trying to communicate to his hands to do it. And I see his little hands move, but they don’t do what he is willing them to do. He just can’t. And my heart breaks to see him work so hard and not be able to do it.

Of course, that’s where I come in- running over to him and helping him pat his hands on his lap. Or do the “Hot Dog” dance from Mickey Mouse Clubhouse for the hundredth time. But seeing the giant smile on his face as we do the things his five year old brain really wants to do makes my heart swell in a good way.

Parenting a child with severe disabilities is so much harder than I ever imagined. I fight back tears on an hourly basis- pretending to be strong for him and reassuring him that he is perfect just the way he is. I can’t take time to mourn for his “different”. I have to be the strong one that assures him that he is able, he is valuable, and he is so special to God.

And then there is Levi. Happy, go-lucky, feet loving Levi. He brings such joy into our lives, filling so many small gaps in parenthood that we have missed with Malachi. We are like first time parents, googling things way more than I care to admit and always asking “is this normal?” I could sit and watch him play for hours. His facial expressions are hilarious and he already has a strong sense of humor.

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He has enjoyed trying some new baby foods this week as long as he is in control of the spoon which ends up being a messy game.

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I know we say this all the time and it sounds like we are just being overly religious, but we are so blessed by these unique boys.

And yes, Levi fell asleep in his swing like this- holding his foot up in mid air. So strange.

Oh goodness so many different directions to take the devotional thought tonight…

I have found a new flaw in myself this week. I have always known it was there but didn’t want to, or should I say didn’t know how to address it.

My heart has taken such a beating over the last several years. I don’t know that it is relatable to many of you, but when you watch someone you literally would die for go through suffering and pain it changes you. I can’t take their place, I can only step into the storm with them and hold them tightly, hoping they won’t feel the storm’s effects quite as much. But I watch helplessly as I see the storm sometimes win.

I feel so helpless like things are out of my control, which time and time again life has proven they are. And each day I wonder to myself if today is the day that things are going to dramatically change for the worst. Each and every day I have to wonder if this is the day I will find that my son has died in his sleep. Is this the day that Malachi will have “the” seizure- the one that takes away the sweet little 5 year old that gives me the tightest hugs his little brain can muster.

I have been living life waiting for the next disaster to hit. And oh my, is that a weary way to walk.

And to be honest, I don’t know that there is a solution to my problem. Sadly, all my fears are rational ones. One day that fear will become our reality…and like I have mentioned before I am torn between wanting my son to outlive Jake and I but also not wanting him to experience any excess suffering and pain, which many children like him have a tendency to do as they grow older.

So I have started to think this week about how I can combat this mindset, because deep down I know it isn’t healthy and it definitely isn’t the way God intends me to walk through my day. And this week he reminded me of something huge:

Malachi is not mine. He belongs to God. And while life tells us we should be on this earth for ____ number of years in order to live a “fulfilled life”, that is a standard that we have created, not God.

Malachi’s story has somehow managed to touch millions of people. There are not many immobile, non-verbal five year olds who have impacted the kingdom of God in such a big way….without speaking a single understandable word. Through his story we have been given the unique and wonderful opportunity to tell you all about our God. God has packed a lifetime of impact into these last five years for him- how beautifully powerful is that?!?! And how blessed are we that we have had a front row seat to watch God work?

And when I remember these truths my mommy heart starts to mend itself.

I really don’t know that I will ever get past this, but when those moments of fear hit I need to stop them in their tracks and refocus on the TRUTH and the beauty of Malachi’s life.

I know all that isn’t necessarily applicable to you, but this verse is:

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

Have you ever stopped to think about the day God created you? How He spoke you into being. How He took the time to handcraft you, as unique and special as you are?

And He also prepared things for you to do in this life. What are those things? Have you spotted them yet?

God didn’t create us with the goal being to live a long life, or have a bunch of kids, or become wealthy. He created us to do good works…things He has specifically chosen YOU for.

My prayer is that He continually leads each of us to those good works and gives us the strength and courage to attempt them, knowing they have been specifically designed for us.

Please pray specifically this week for Levi’s sleep study on the 31st. There is so much weighing on the results- if he fails this study we will have to trach him. Please join me in praying for a miracle that his vocal cords wake up before then and begin functioning as they should. And pray for sweet Malachi, that God will continue to reconnect the broken pieces of his brain. And pray that God gives Jake and I supernatural wisdom to be able to navigate the decisions and needs for these two special blessings.

Much love,

Leah

 

 

 

 

When I Am Weak

This has been a week of ups and downs. Strap on your seat belts and be ready for a long update.

But before I start those updates, let me tell you…last week’s update gave me a good laugh as I could tell how tired my brain was when I read it back. To be totally transparent, I fell asleep three times while trying to write the devotional part. Apparently my fingers kept typing during those moments leaving some pretty random sentences. At one point I woke up to find that I typed “Christians typing sentences”…

But I am filled with caffeine right now and haven’t seen a rat turd today so it should be better one.

Let’s start off with my epic Friday meltdown. A few weeks ago we took Malachi to his regularly scheduled neurosurgeon appointment. Some background info here: Malachi has a device in in his head called a VP shunt. When his brain bled at 3 days old the blood dried and clogged the small holes for his spinal fluid to escape the inside of his brain (the ventricles). The VP shunt is a small machine under his scalp in the back of his head- most people don’t know it is there, although oddly enough his hair is starting to turn gray right where the shunt is. The shunt has a catheter that allows the spinal fluid to get out of his ventricles and re-routes it into his stomach cavity for the body to absorb.

Statistically, most children that have these shunts will have at least one malfunction in the first 5 years. We are on year five and have not had a malfunction, praise the Lord! A malfunction would likely require emergency surgery to repair or replace the shunt as he cannot live without it.

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We routinely check the shunt using CT scans to make sure it is working like it should, but CT exposes him to a lot of radiation. At our most recent appointment the neurosurgeon suggested we do a “rapid MRI” to get some baseline images of how the shunt is working. An MRI would be much less radiation for him.

But here is the catch: we have never allowed anyone to do an MRI on Malachi. Yes, doctors have consistently tried to get us to do one but we have always declined as they wanted to do it more out of curiosity rather than medical necessity. Malachi’s brain damage is global (meaning all over the place) and he does not have much brain matter left. Doctors have always been fascinated by Malachi’s ability to function as well as he does and wanted to get better imaging of his brain. But MRIs require sedation, something we have a bad history with. So we always say no.

When the neurosurgeon brought up the rapid MRI I immediately started building up that concrete wall. I said “We really don’t want to sedate him unless absolutely necessary…” to which he replied that the rapid MRIs don’t require sedation. I said “So he can move?” and he said yes. I asked him how long the scan would take and he said “only about 30 seconds” and that it was a relatively new technology for the hospital.

Hey, that doesn’t sound so bad! We agreed to the rapid MRI and he said they would call and schedule it.

Fast forward to Friday and MRI day was here. I left Levi home with Jake and Malachi and I embarked on our 1 hour drive to the nearest children’s hospital. I checked in at the front desk 15 minutes before our scheduled time and they told me if I was willing to walk across the hospital to the other MRI rooms I could get scanned right away! If not, I would have to wait at least 30 minutes. That was an easy decision so I packed up and started our journey. We got to the new location and we were given some hospital scrubs to put on as you have to be extremely careful about what you can have near MRI machines.

We were changed and ready to go, but the techs were studying his paperwork and noticed the note about the metal coil next to Malachi’s heart. In 2015 he had a heart procedure to place a coil to close his PDA. Apparently the machines in this MRI room weren’t able to scan patients with heart coils. So they sent me back to our original office.

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I was trying my best to keep a good attitude as I wheeled Malachi, both of us still in scrubs that were too big and barely covering areas that needed to be covered all the way across the hospital again. We checked back in and I was told that they had given our slot away since we had gone downstairs and it was going to be another 30 minutes before the machine would be ready for Malachi.

I could feel my attitude morphing slowly into Mama Bear mode as he and I sat uncomfortably in the waiting area, still dressed semi-undecently. I had waited to feed him as I didn’t want him throwing up when I laid him down. But now he was well past his time to eat and still we were waiting.

We finally made it back to the MRI machine and when we walked into the room I got hit with a wave of nausea. This was the same room Levi had been taken when he had his first MRI in November in the Chattanooga NICU. Levi had not done well on the journey to the machine and screamed and screamed on the short isolette ride until he turned colors. I kept asking his nurse and the airway nurse that transported him if he was okay and they kept saying “his numbers are still good” which we know from our botched airplane ride doesn’t always give you a good picture with Levi. Deep down I have wondered (and still daily wonder) if this trip to the MRI machine is what caused his moments of brain damage. I should have stopped them after he didn’t handle the transport well, but I didn’t speak up…something I carry so much regret over.

That night with Levi, they had told me they thought they could do it without sedating him, and as I watched him scream I knew that this would not be as smooth as they were anticipating. They strapped him to a papoose board and put him in the machine for 25 minutes only to report that he had moved too much and they would need to try again when he was sedated. I was a wreck that night as I knew I should have intervened…the simply had not done what was in Levi’s best interest and I didn’t advocate for him. I cried myself to sleep that night, ridden with guilt.

So back to Friday…here we were in that same stupid room. I was trying to keep my emotions intact as I picked up smiling Malachi and laid him on the table. She started to pad his head and put ear plugs in his ears and made the comment “we have to keep him from moving.” This struck me as odd, because the neurosurgeon had specifically told me that movement was okay for the rapid MRI. I said “It is only for 30 seconds right?” and she said no that he had to be perfectly still for at least 10 minutes. I explained that it would never be possible for that to happen and she said “We may need to call anesthesia to sedate him then.”

And then the emotional floodgates started to break.

Last time we allowed them to sedate Malachi he went into a 30 minute (yes, you read that right) whole body seizure that led to a hospital stay. I started to cry and said “You are not sedating him. We would have never agreed to this if we thought he was going to be sedated.” And told her to sit tight while I went and called the neurosurgeon.

The neurosurgeons office backed up everything I was told in the appointment, and said they would be right there to talk with the MRI techs. The techs were obstinately stating that this was the only way to do a rapid MRI. At this point it was all just too much for me and I was bawling and snatched Malachi up off the table and told them we were leaving. I try not to cry much these days, but when I do it is one ugly scene.

The neurosurgeon team had been waiting on us to get finished so they could reprogram his shunt (they can do that with a magnet- super cool huh). And when I came wheeling out of the MRI area they were there waiting for me. I continued to uncontrollably ugly cry, frustrated that I had come all this way under false pretenses and even more frustrated that people that didn’t know my child’s medical history well were so flippantly just “going to call in anesthesia to sedate”. They said they would try to schedule another one when we could be prepared for sedation and I told them no thank you. I know CT scans are more radiation but we would prefer to do one of those as they don’t require any sedation at all.

But all that crying absolutely drained me. I seriously could not get a grip. The neurosurgery team was so kind in spite of my breakdown and gave me some meal vouchers to make up for all the chaos. There was a zero percent chance I would be able to eat so I packed them away for another day.

Alright now let me give you a few heartwarming updates. We had our typical appointments this week, but Malachi got to see so many of his friends too. His buddy Thatcher just happened to have a horse therapy session right before Malachi!

 

Then the following day we were able to catch up with another friend named Jonathan. His mother stumbled upon our Chick-Fil-A story last year and connected with us…we live in the same county but on opposite sides of the mountain so our hangouts have to be intentional. We were able to meet up for lunch this week!

 

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Malachi has been showing us a lot of emotion lately, which is amazing to see, but challenging to navigate. For example, at lunch with our buddy I let Levi sit on Jonathan’s lap. Malachi did not like sharing Levi and quickly said “NO” with his signs. When I offered for Malachi to hold Levi he very adamantly again told me NO. I put Levi on Malachi’s lap anyway and he proceeded to try to push him away. This happens often when Jake or I try to talk to Levi or give him attention…Malachi gets very angry.

He is also having a hard time sharing his toys with Levi, so we are trying to respect his feelings and designate some of his favorites as big boy only toys.

But he is very interested in the Big Brother side of their relationship. We talk a lot about how Levi is a baby but Malachi is a big boy so he has to learn to be nice to Levi. He likes to have those talks and puffs out his chest with pride that he is so big. He really does love his baby Levi.

 

But this week we experienced another first with the boys. Levi and Malachi were laying on the ground playing and as Levi often does, he rotated his body all the way around and kicked Malachi in the tummy VERY hard. I immediately moved Levi and watched Malachi to see how he would react. He was in shock at first, then his face morphed into pure sadness. He just couldn’t process why his baby brother had hurt him. It wasn’t a “pain” cry, but a “you hurt my feelings” cry that took 45 minutes to get through. I tried to explain to him that Levi is a baby and doesn’t know how to listen and obey the rules like Malachi does. I finally got him calmed down and when Jake came into the room I told him what had happened- hearing it again made Malachi cry even harder as he reminisced about what happened. Poor boy.

 

On my 4 hour drive home from South Carolina on Monday Malachi had his first full fledged temper tantrum. He has never had these before so it took me pulling over three times and checking him for pain/discomfort before I realized what was happening. He hollered from the back seat, screaming, yelling, and crying to let me know that he did not want to be in the car any longer. But yay for his ability to show emotion!

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Levi has been doing so great this week. He is thoroughly enjoying exploring different foods and is eager to try new things. I took this video of him eating for you:

 

He is also exploring toys like a wild man. We let him play with one of Malachi’s cars and he was cracking me up so I took a video:

 

But the biggest fun update about Levi is that he has started giggling!! And it is such a beautiful noise; oddly enough Malachi giggled for the first time on July 1st (same as Levi!). Take a listen:

 

Levi really is such a good baby. He is starting to want to be held more and will reach out his arms to be picked up. He is insistent though on self-soothing when he gets upset and the only solution is to set him down by himself. This is something that has been making me sad lately, as it reminds me of all the times I wasn’t there in the NICU with him when he needed to be comforted. He has now trained himself to self soothe instead of relying on mommy to help, and it breaks my heart that a child so small ever had to experience suffering alone. A child should never have to equate humans to stress, and desire to be left alone.

In unrelated news, the bear(s) are back. Our neighbor saw one sitting in the road in front of our house last week, but he hasn’t come back up to the house yet! That I can handle.

Then later in the week Jake and I pulled onto our road and one was about 100 yards away. He hid in the tree line as we drove by and I texted the neighbor who immediately went in his car to go find him. He texted back that he had turned the corner from our house right after we had pulled in the driveway and it was running full speed up the road- almost as if it was chasing our car! He ran into the trees so we have been keeping an eye out for him.

This one was much smaller than our visitor a few weeks ago. Tall and lanky like a teenager.

Last week I alluded to some great conversations I was able to have with some of our youth, and one in particular keeps resonating with me. I am going to be very careful here to protect her so I will give general information.

One of the teens came and found me at camp late one night to talk about something she has been regularly struggling with. This particular thing has been crippling her and she just wanted to know how to get rid of it. She said “I have prayed and prayed for God to take this from me and He just wont.”

As she spoke God said to me “Tell her about the thorn.”

I said “Have you ever read about the thorn in Paul’s flesh?” We turned to 2 Corinthians 12 and started studying that scripture and by the end even I had God goosebumps as I knew this message was for her, me, and for someone who reads the blog as well. Maybe this is for you.

In this scripture Paul talks about how he was given a thorn in his flesh. He actually refers to it as a messenger of Satan put there to torment him. No one knows exactly what the thorn represented, but we know it was ever present and painful. He prayed and he prayed for God to remove it from him…

Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

Is there something in your life that causes you DAILY pain? Something that you feel with every movement throughout the day? What is the thorn in your flesh? What have you prayed for God to take from you, but it just won’t budge from your life?

As I read verse 9 with my teenager friend I started crying, as I heard God saying these words to me… “My grace is sufficient for you, for my power is made perfect in weakness.”

He acknowledged the struggle. He acknowledged the pain. He didn’t chastise Paul for his complaining, but rather he acknowledged the thorn. And He reminded me that it is in those weak moments when I am empty that God’s power can be seen. It is in those moments when I have nothing left…when I am limp and powerless… that God steps in and strengthens me with a light that can only be His.

His power is made PERFECT in our weakness. 

Without my weaknesses, God is not needed in my life. 

And then Paul goes on to say that he will boast about his weaknesses. What a slap in the face to the devil. I think back to the words of Joseph in Genesis 50: “You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.

I started thinking about my life with Malachi and Levi. Speaking transparently, their level of care is the thorn in my flesh. Mentally and physically keeping them alive, healthy, and happy is a true struggle and challenge. I have prayed over and over again for God to heal them completely…

But His grace alone is sufficient. And God’s power is absolutely made perfect in my weakness.

Oh what things I imagine the devil predicted would happen when he hit Jake and I with each of our challenges…each of our thorns. And like Joseph, I see that those things the devil thought would break us and cause us to turn from God have only been used BY God for glorious things.

I look at my life and see how I have been stripped down. My ability to control my life is gone. I live day by day, praying that tomorrow will be the day that my sons are healed. And each day I have to learn how to deal with disappointment that God hasn’t healed them. But oh my goodness, how this life has taught me to rely on Christ’s power.

His power is made perfect in my weakness.

So like Paul, I am thankful for my thorns. I am thankful that I have been given such a challenge, because it requires that I stay close to God. Every time my knees grow weak, like this week in the MRI room, He is there to catch me and renew my strength.

What a blessing it is to be given daily reminders of the necessity of walking with God.

“For when I am weak, then I am strong.”

WOW that sentence holds some power.

I hope this week you are able to see your thorns in a new light. I pray that God is able to touch your soul as He whispers “My grace is sufficient for you, for my power is made perfect in weakness.” I hope you are able to see your weakness as a blessing, and that it sends you falling into the arms of our loving God.

Please continue to pray for our family, and join me in praying daily for my sons to be made whole. God’s power is also made perfect in their weaknesses….in Levi’s struggle to breathe, in Malachi’s struggles with epilepsy and body. I see God work through their weaknesses to touch my soul. Pray that He continues to use their lives to manifest Himself here on earth.

Much love,

Leah