Run Towards the Gutting

I feel like I should warn you that I have a ridiculous amount of pictures, videos, and stories to share with you this week. It has been filled with lots of adventures!

Emotions in the Carroll house have been all over the map this week. Since his surgery last Friday, Levi is not sleeping well at all. He screams at bedtime and finally crashes around midnight. Then he is up one hour, two hours, three hours later. His eye goo medicine has to go in at bedtime which I am confident is contributing to his big emotions. We are also battling each night to get his nasal cannula and other wires back on him without him immediately ripping them off. When the oxygen was a 24/7 thing he didn’t seem to notice but now that he has tasted freedom he doesn’t want it back on.

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His nightly wake ups have been waking up big brother, who is much harder to get back into bed. Each night is a steady stream of me racing one boy out of the bedroom before he wakes up the other.

I know what you are thinking- the easy solution is to get them into their own rooms but that would be so much more difficult on all of us. Just last night alone I was up and down dealing with Levi’s beeping machines (they were literally beeping…that wasn’t an attempt to slide in a curse word haha) and kinked cords 14 times in 8 hours. If he were in another room that would be a whole lot of running across the house in one night. He also is still getting them wrapped around his neck at night.

One night this week Levi successfully tore his oxygen off while we were sleeping. His pulse oximeter machine alarmed because he dropped too low on his oxygen and I jumped up to see what was going on. He was panicky, holding his breath and flailing (we think he had refluxed in his sleep). After quickly assessing I went into medical momma mode and grabbed my phone, ready to dial 911. It has been so many months since I have felt the need to grab the phone. I was able to get Levi to calm down enough to breathe but was a not-so-subtle reminder about the speed at which bad things can happen.

Then there is sweet Malachi. If I leave his body to do its own thing at night he starts in the shape of an “L” with his legs folded straight out at 90 degrees. He contorts his body throughout the night and ends up quickly in the shape of a V, folded in the middle. It hurts to look at him. I use my body to keep his straight at night, continually fighting his muscles. I can’t lay him on his back to sleep because when he has his night seizures he sometimes vomits, and I am scared for him to aspirate.

Malachi’s brain locks in on a time and he wakes up to the minute of that time for a few weeks. Then it suddenly changes. We have been locked in at 4:06 for several weeks. So at 4:06 I race him out of the bedroom before he has the opportunity to wake up brother (he wakes up with a seizure and can be loud). I make him lay back in the bed with me and watch cartoons at 6:00. We have been practicing whispering…he knows that he can wake up little brother by yelling too loudly and thinks it is hilarious.

This week we tried school three days with Malachi. Each morning that we are planning to go I ask Malachi if he wants to go to school. On Tuesday he excitedly signed YES so off we went. Thirty minutes after dropping him off they school called and said he was sobbing uncontrollably and they couldn’t calm him down. This is very rare for Malachi so I immediately went back and picked him up. I thought that maybe it was a tummy ache and he went pretty much back to normal right by the time we got him home.

The next morning I asked him if he wanted to go and he signed NO. I gave him some time, then asked again and he gave me a half hearted YES. I drove him there and wheeled him in and immediately he started sobbing again. We went to the parking lot and sat for a bit and talked. Malachi is very quick to respond to yes or no questions so I started asking him what was bothering him: “Does your tummy hurt?” No “Does your head hurt?” No. I never could get an answer out of him, but he had calmed down so we tried again.

His teacher took him to his inclusion kindergarten class and he had the best time! The kids in that class are so kind to Malachi and he was giggling when he left the room. I thought we had gotten past our emotions, so we tried again Thursday with no tears. Friday he was adamantly signing NO all morning long so I decided to keep him with me.

This is not normal for Malachi and with him being non-verbal it is so hard to figure out what is going on. I am confident that he is being treated like a king when he is at school, and have no fears or doubts about people being kind to him. We have been adjusting his medication slightly, trying to wean one big seizure med and that is the only big change in the last week. So we increased back up on that med and are hoping for next week to be better.

I am slightly suspicious that there are some jealousy issues going on with Levi getting to stay home with mom while he is at school. We are seeing some more of that brotherly bickering these days. I am actually proud of Malachi because he has started pushing Levi off of him when he doesn’t want him to sit on his lap! Case in point, check out this picture of Malachi sharing the swing at therapy with Levi…

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Here is a sweet video of him ALONE on the swing at therapy; note the difference when he doesn’t have to share:

Malachi’s spring soccer league started this week, which is something he has been looking forward to. He was all grins as we headed to the game on Saturday. He was especially excited about getting a new jersey.

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Malachi’s head control gets worse when he is focusing on other things. It is like his brain can’t handle all the stimulus the world throws at it all at once. At the suggestion of our therapist and DME we ordered him a neck support that holds his head up for him. It looks like a torture device so we truthfully have not used it often with him. But I thought he might be able to enjoy soccer more if he didn’t have to work to hold up his head.

I asked his permission to try it and he signed yes. I continually asked him if he wanted to take it off throughout the game and he never signed yes, which tells me he didn’t mind it. We were able to incline his seat all the way up with it on, which he really seemed to like.

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At one point in the game the giant inflatable ball flew through the air and hit him in the head. The crowd gasped and I looked at Malachi to see if he was okay. He processed what had happened for a few seconds then smiled a massive grin and signed MORE MORE MORE!

He love rough and tumble play just like a 6 year old boy should!

Let’s talk about Levi. Sweet baby Levi…

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Levi is up to no good 98% of the time. One of his favorite activities right now is ripping out the registers on the ground and trying to climb down the ductwork. We have to keep eyes on him at all times.

One night this week Jake thought I was watching Levi and I thought Jake was watching him. A story that starts like that will never end well.

I noticed when Levi was crawling/scooting across the tile floor he was leaving a trail of wetness. I went to investigate and he had a baby wipe in his hand/mouth. I told Jake “Oh no worries he has a baby wipe.” and took it from him. Jake then said “Ummm, I hid all the baby wipes from him an hour ago.”

I followed the trail of wetness back to a freshly opened poopy diaper that he had found, opened, and whose wipe he was now sucking on.

Yep. Nasty.

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Levi was dedicated at church this morning. We assumed he would cry once he noticed everyone staring at him, but oddly enough he didn’t seem to notice. He was too busy doing acrobats in our arms trying to get away. Pretty on par.

We did get some sweet photos for Mother’s Day after the service though. I couldn’t choose a favorite so I figured I would include my top ones.

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I have been hesitating giving you this next update, but when I told my grandma over the phone she insisted I include it so all her friends could hear it. So a few disclaimers so I don’t get hate mail…

  1. Jake and I LOVE animals. We have zero desire to take the life of any animal**, EXCEPT if it is endangering our lives. We have never hunted and have no desire to.
  2. I catch spiders and free them outside in an effort to spare their lives and feelings.
  3. I am ridiculously soft hearted. I remember times when I was little when I would tuck all of my stuffed animals into my bed and sleep shivering on the floor next to them. Their comfort was more important than mine.

**I will kill mice and rats in a heartbeat. They are my nemesis.

Now that we have that out of the way, here we go.

I shot the bear. Y’all….I SHOT THE STINKING BEAR. With a shotgun at about 35 feet. Yes, I got within 35 feet of our bear visitor.

Before you start addressing the angry letters let me give you a spoiler alert and assure you that it did not kill him. In fact, it didn’t seem to phase him one bit.

So starting at the beginning. We get lots of wildlife around our house. We live in the middle of the woods next to a national forest, so we expect to see some neat things. We get bears from time to time who stay for a few weeks then leave. We try to make sure trash gets taken to the dump regularly (no trash pick up where we live) and we do our best to not attract the wildlife to the house.

This most recent bear visitor has been a little bolder than ones we have dealt with in the past. He likes to hang out on the front porch from 11pm-5:00a when Jake leaves for work. That crosses our safety line so we have been trying to figure out what to do.

He checks in almost every night between 10p-11p and loves Mondays when I cook salmon so naturally we expected him to stop by. We have a security camera outside that is activated by motion so we can watch for him before we leave. Here are a few videos to show you what we are dealing with…

 

Just to remind you in case you forgot- that is our front door. And that is my van. I have to walk from that door to that van three times each morning to load the boys up and three times to unload them into the house. I travel that route at least 7 minutes each time we leave or come home. We can’t have a bear casually hanging out there. Or lurking as he is doing in this photo below. He stood like this, waiting by the door for over 4 minutes one night.

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One more photo for emphasis so you don’t judge me…

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We have been pretty passive aggressive up to this point but after watching him spend almost an entire evening out there we decided to motivate him to leave. Attempt #1 was to set off the car alarms. While he did run to the treeline it seemed to make him even more curious, drawing him back up to the van in no time. Lovely. We attempted the car alarm again and he didn’t even flinch.

Jake said “Leah, we are going to have to shoot close to him this time.” I have been shooting into the air when he is close to the house to try to scare him, but obviously that hasn’t worked. I was watching him through the window and he started to meander to the back of the house. I grabbed the shotgun and headed to the living room and watched him through the windows. He walked past the deck (where I shoot from) and I figured it would be a great opportunity to shoot behind him, maybe catching him off guard enough to truly scare him away.

But then he turned around and started to walk back towards the deck. In my head, it was now or never so I loaded the 12 gauge and ran outside. When I opened the door, instead of running like I expected him to he just stopped and stared right at me. He was poised like he was ready to run, and I wasn’t confident that the would run away from me. My adrenaline was pumping as I realized we were maybe 35 feet apart (black bears run FAST) so I pointed the gun at him and fired without hesitation. It clearly hit him and he jumped and ran off into the woods.

Jake had been watching from the windows in the living room and when I ran in he said “HOLY CRAP. YOU JUST SHOT THE BEAR!” to which I replied “I JUST SHOT A STINKING BEAR!!! WHAT DO WE DO NOW???”

We crept out on the back deck with a high powered flashlight we keep by the door for bear scares and could hear him walking around at the tree line, in my head looking for a place to curl up and die. I was shaking at this point, feeling terrible that I took the life of a sweet, innocent bear who loved our front porch so much. After all, we have a welcome sign out front that has a black bear on it. Maybe he was just confused. We gave him mixed signals. We cooked too much good smelling salmon.

Then I got really mad at Jake. Yep- I played the blame shift game: “Why did you tell me to shoot the bear?!? I didn’t want him to die!” Jake shouting back “Better a dead bear than a dead baby!” And I did what every irrational person does when they shoot a bear- I started to google things.

When I wasn’t getting answers I liked on google. I texted my dad.

“I hate to wake you, but I just shot the bear and I am freaking out. Mulitpurpose load- what is the range? He was within 35 feet. I just went into my element and aimed low…he ran off but can that kill him?”

When he didn’t respond I made the 2am phone call. He said the load I used probably stung the bear but likely didn’t pierce the skin at that range and he wasn’t going to die. WHEW! He said “He probably won’t be coming back anytime soon!”

I tried to calm down enough to sleep and finally closed my eyes, but then my phone alarmed that something was on the front porch. It was that dang bear again. And he stayed there the entire night. We aren’t sure if he was ready to retaliate or just proving a point. Jake had to scare him off the porch in order to leave for work the next morning.

I called and talked to a ranger friend who said to shoot at him every night for another week and a half and if he still sticks around they will come trap and relocate him. He hasn’t visited the front porch for four days but has been messing with the neighbors things so we know he is still close.

Our life is ridiculous.

If you have followed the blog for the last 6 years you already know that Mother’s Day is very difficult for me. My first mother’s day I woke up alone in a Ronald McDonald House and walked over to the ICU to spend time with my firstborn. His daytime nurse had so kindly bought a card and put Malachi’s sweet hand print on it for me. I remember mourning in my heart that day thinking about the fact that Malachi’s due date was supposed to be a few weeks AFTER mother’s day but here instead he was a medically fragile 3 month old that had just undergone his second big brain surgery.

Sometimes I catch myself wishing I lived in the world that many of you live in…a world that hasn’t seen true darkness. A world that doesn’t know anything about the other side of the ICU double doors.

But my eyes have been opened to that world and now I can’t unsee it. Even when I am not in it, I think of it and all the mom’s that are spending this mother’s day in those cold, dark rooms, begging that their child live to see another day.

No matter how hard I try, my heart can’t help but feel their pain. I have spent most of the day processing that empathy that often robs me of joy on days like these.

God has intertwined our journey with some other families over the last several years, and one of those friends is in the ICU right now fighting some pretty big battles. All day long I have thought about the boy’s mother, Danielle.

I read something this week that caught my attention. It was posted on some random Facebook page, but the words pierced me.

Run toward the things that gut you, the broken things in this world that beg you to stretch yourself out and lay across the gaps. Part of you- a loud part- will say stay away from those things, stay comfortable. I say run full speed toward the gutting and away from the comfortable, because you are here for such a time as this. -www.stevieswift.com

As I processed these words that I don’t think were meant to be spiritual, I realized the power in them. This is exactly what Christ has done for us. His ministry on earth was just this- running full speed toward the gutting. He didn’t waste time on trivial things. He sought out the broken, the lost, the hurting.

God never once has called us to a life of comfort as His children. How often do we look for the brokeness and run to it? How often do we choose to pursue the ugly parts of life that our minds like to pretend don’t exist.

I am now 100% absolutely positively sure that God is calling me to a ministry for medical moms like my friend on Mother’s Day, but that is beside the point. Each and every day we should be drawn to the broken, eager to show them the love of Christ.

Yes, mother’s day is a great thing. It is always refreshing to be acknowledged and honored.

Matthew 16:24  Then Jesus told his disciples, “If anyone would come after me, let him deny himself and take up his cross and follow me.”

We have been called to deny ourselves and take up our cross. My cross will look very different than yours. My walk with that cross will lead me in a very different direction than yours. But on my path I will encounter many other moms carrying similar crosses. Instead of those crossing being seen as burdens, we can choose to make them billboards that proclaim contentment in the face of adversity- something that only a relationship with God can produce. It takes God to find true contentment in bearing a burden that you have been given.

As we carry those crosses we should be looking for others on our paths that need encouragement. We should be offering to carry theirs too for a bit, seeing that their load has become too much to bear.  We should be willing to sacrifice our comfort to show the love of Christ to another.

Run full speed towards the gutting.

Tonight instead of asking for prayers for my boys, I want to ask that you lift up Danielle and her son Jonathan. Pray that she is overwhelmed with peace from God and that Jonathan’s body experiences a miraculous healing.

And in honor of them this Mother’s Day week, look for a cross that you can help carry. Find the painful thing you divert your eyes away from and run full speed towards it, looking for ways to help.

God bless,

Leah

 

 

Remove This Cup

Another surgery day in the books. The relief I feel when they are completely done is something I can’t even describe.

But before I tackle the surgery day let me run through a few random and useless updates just for the fun of it.

We caught a picture of our bear friend this week. He came on salmon night yet again.

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Our front door is to the left of those rockers if that gives you some perspective.

Speaking of salmon, our Monday shopping trips just got a bit easier now that I figured out how to rig up Levi’s big boy seat onto Malachi’s wheelchair stroller.

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As you can see in the picture above, Levi loves to mess with Malachi’s feet. Well, Levi loves to mess with Malachi period. He never leaves his side at the house, which is so sweet but also so dangerous for Malachi. This week he has been very rough with Malachi, causing him to burst into tears multiple times. I watch them like a hawk but Levi’s violence is so fast!

I want to encourage their brotherly bond, but also let Malachi know that he has a voice and can communicate to me when he is no longer enjoying the interaction.

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I am constantly asking Malachi if he is happy or sad about Levi’s rough play and the majority of the time he tells me “happy” with his signs, but every now and then he gives me a firm “sad” sign and I pull Levi away. They really do love each other so much! Levi means well….mostly.

The high school boys soccer team we coach ended their season on Thursday so our schedule frees up tremendously for a bit. The temps have been getting more and more intense making it difficult for me to justify taking the kids out to the games.

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Here is Levi with one of our other coaches, Tanner. He is Levi’s best bud and one of the only people Levi will willingly go to.

Okay, now on to the big surgery reports.

Levi and I hit the road around 4:30 on Friday morning (after checking for our bear friend of course) and headed down to Chattanooga to check in. We decided it was best for Jake to stay home with Malachi to cut down on some of the chaos. Levi was the first surgery of the day with an operating room time of 8:00. Since we were pairing two surgeries into one operating room we were top of the list.

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Even though we have done this dozens of times, this time around was a little different experience since he is more mobile and more aware. He was his normal, wild self getting into everything within his reach. It was all fun and games until I made him change into his hospital gown.

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And then the eye surgeon marked on the operative eye which he did not enjoy.

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We jumped through all of the pre-surgery hoops- meeting with anesthesia, both surgeons, operating room nurses, and several others. Then the dreaded hand off moment came. We were able to send some “silly juice” into his tube that helped keep him a bit calmer since he is having separation anxiety issues, and with that on board he happily went with the nurses. For most of Levi’s other surgeries I have carried him back to the operating room so this was a different transition for me to deal with.

Levi had his right eye operated on, peeling back the outer layer and manipulating the muscles to get the eye more centered instead of gravitating inward. We will likely have to do the same thing to his other eye as well, but our hope is that his brain will like what it sees and start to correct automatically without any other interventions.

Here is a photo progression of the last few days.

Surgery Day (right out of recovery):

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Later that afternoon:

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The evening of surgery day:

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Saturday:

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And finally, today:

It progressively got worse but now is starting to look a little better. We have to put an ointment in it each night and keep him from touching it, which is an enormous challenge.

The eye surgery went as planned and we will be following up with the surgeon in about two weeks. It can take the brain up to 3 month to adjust to the changes so we won’t be able to call the surgery a success or a failure for several weeks.

Levi also had a bronchoscopy (throat scope with a flexible tube down his nose, hence the runny nose in the pics). In order to tell how the vocal cords are moving he can’t be completely under so they do a lighter sedation during that procedure.

The surgeon came in and gave us the amazing news that Levi’s vocal cords are moving!! This is HUGE! Backstory in case you are new to the blog…

Levi was born with idiopathic (which means unexplained) bilateral (means both) vocal cords paralysis (meaning his vocal cords don’t move). This is an extremely rare diagnosis, some sites stating that it happens to approximately one in a million children. This was the first case of idiopathic BVCP for our Chattanooga ENT. There was a 50% chance the brain would wake them up by the time he turned five.

We have been treating Levi as though his cords will never wake up, so I was absolutely thrilled to hear that he saw movement!

In my head, if the vocal cords woke up life would go back to normal for Levi! But I am learning that it is a little more complicated than that. The cords are moving, but we aren’t confident that they are moving like a typical persons. He is still having a pretty loud stridor (wheeze) when he gets worked up and still requires 1/2 liter of oxygen at night so there is still something complicated going on in that airway of his.

BUT as you can imagine, this is a huge step in the right direction! Based on this information we will now be pursuing a swallow study to see if it is safe for him to drink liquids, with the goal being to get him completely off his g-tube. Once the tube goes unused for 6 months it can be removed permanently.

We will also be setting up an oxygen study to see how low we can go at night to keep him safe.

Tomorrow I will be calling Cincinnati to set up an appointment. They will likely want to see it for themselves, meaning another procedure up north but I am excited to share the news with them. This really is an answer to our prayer.

Alright, raw emotion time.

This week has been very difficult for me. I have to fight hard against my emotions on surgery days, as crying drains me of any tiny inkling of energy I might still have left. I was running on under four hours of sleep and could feel the breakdown coming, each time talking myself out of it.

Have you ever had zero desire to do something? It is like looking down a dark path that you are 100% sure will lead to pain and suffering for your child. No part of you wants to step foot on that path. Everything inside of you is telling you to run away from that path. But again and again…37 stinking times…. I scoop up my unsuspecting, beautiful children and carry them down that dark path towards the pain and suffering. They allow themselves to be carried, still smiling, trusting that mom will protect them from discomfort. But the reality is that as much as I desire to, I simply can’t. I kiss their sweet foreheads one more time and watch them get closer and closer to the pain until it strikes them leaving it’s mark. And after the pain hits all I can do is hold them tight and reassure them I won’t let it happen again, which is a complete lie.

I have to let it happen again, and again, and again. I am plagued with so much guilt for the part I play in their necessary pain.

I shouldn’t have a “surgery shirt”. A dark shirt that hides the post-op blood that my boys inevitably pour on me as I desperately try to comfort them in the recovery room.

I shouldn’t have a hospital backpack- something I splurged on last year. My splurges should be pedicures and purses like other moms my age. And I shouldn’t have to pack that bag for an unexpected hospital stay, something previous surgeries have trained me to plan for.

I shouldn’t have a “night before surgery” routine of clipping my fingernails so I don’t self mutilate my fingers during surgery.

I shouldn’t be able to walk blindfolded to the recovery room. Or know where the bathroom is without asking. Or even know when the best time to take a restroom break is so you don’t miss surgery updates.

I shouldn’t be recognized and called by name by the anesthesiologist.

I shouldn’t be glad that this is just an outpatient surgery. I should be like all the other moms waiting with their children in pre-op…terrified and nauseous, not sure what is about to take place.

I shouldn’t have to avoid the foods I love on surgery days, worried that the emotions of the day will attach themselves to that food putting it on my “never again” list.

I shouldn’t be able to tell you the exact room and chair I sat in for each of my sons life saving surgeries.

I shouldn’t know these things.

These negative thoughts could end here, and I would be totally justified in having them. But there is a light inside me that reminds me not to dwell in the darkness. So I will step back out of the emotional shadows I have allowed myself to gravitate towards and pursue joy, as elusive as it may be sometimes. Yes, crazy, inexplicable, unwarranted joy.

It is in these dark moments that even our emotions can reflect the light of hope that is within us.

As I thought about these emotions this week I couldn’t help but think about Jesus in the Garden of Gethsemane. This story appears in all four of the gospels and I like each account for different reasons. But for tonight I want to share Mark’s account with you from Mark 14.

33 And He took with Him Peter and James and John, and began to be very distressed and troubled.34 And He said to them, “My soul is deeply grieved to the point of death; remain here and keep watch.” 35 And He went a little beyond them, and fell to the ground and began to pray that if it were possible, the hour might pass Him by. 36 And He was saying, “Abba! Father! All things are possible for You; remove this cup from Me; yet not what I will, but what You will.”

I talked about staring down that dark path that you know leads to pain and suffering. Christ faced a dark path that He knew would lead to a morbid and painful undeserved death. My dread and agony was a tiny little fraction of what Christ was dealing with that night, so don’t think I am bold enough to compare my trials to the one that he faced. But there are so many things in this passage that my heart relates and clings to.

“My soul is deeply grieved…”   Oh what a perfect description for the turmoil that my heart experiences for my children. It is a deep mourning that takes place, knowing that there is nothing I can do to prevent their suffering in this life.

“All things are possible for you; remove this cup from Me…”   As difficult as the last six years have been, it has never shaken our faith and belief in God. I know that God is able to remove my cup at any moment. But like Christ, I also recognize that the cup in my hand has come from God. And there is a reason He has handed me this cup and compelled me to carry it.

Then there is the single word, “remove”. I acknowledge this cup God has given me and as painful as it may be I will continue to carry it boldly, believing that this is what God has called me to do. Do I have the ability to throw the cup in anger, or ignore the purpose that He has placed this cup so delicately in my hands? In a sense, yes. But until God REMOVES this cup, I will continue to bear it even when it causes me such heart-wrenching pain. I choose to continue to believe that the cup, while painful, is serving a much greater purpose that I cannot see. And it is God’s job to remove it, not mine.

“Yet not what I will, but what you will.”    Ugh. This is hard to verbalize to God and actually mean it. I want to insist that God heal my boys. I want to bargain, beg, and plead that He transform them miraculously…and I believe that it pleases God to continue to hear me believe in and ask for the impossible. But like Christ did I must acknowledge that God’s will supersedes the picturesque one I have created in my mind. And life Christ, I must remember to continually pray that God’s will is the thing that I truly desire.

This life is a challenging one, and weeks like this one are brutal reminders of that point. The emotions of this week have left me physically weak and emotionally fragile. But it is in this dizzy state that I have to focus my eyes on God instead of looking down at the waves lapping at my ankles.

Please continue to pray for answered prayers for my boys. And pray for rejuvenation this week for my nerves. And if I haven’t said it lately, thank you for continuing to cover our family in prayer.

Much love,

Leah

 

A Wildflower

The Carroll boys had a great week! With so many medical appointments each week I get really excited when we get a whole 24 hours without having to be at a doctor’s office or therapy…this week that special day was Friday. It feels so nice to just spend some time at the house being “typical”.

 

Levi is mobile now, pulling up to standing and doing his best to take cautious steps while clinging to furniture. He is also officially into EVERYTHING…his favorite place is the pantry, particularly the baking shelf…I caught him sucking on the brown sugar bag earlier this week.

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Levi’s new favorite game is climbing Malachi. I took this picture of him playing in his canoe and I stepped out for about 12 seconds and came back to find him like this.

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We also went to battle again with the bears this week. Most of the time when they come up to the house it is in the middle of the night while we are sleeping. But for some reason they have been coming up shortly after we get home at night, between 10:00p-11:00p. I was able to finally get a good look at the one that visited Friday night; he looks like a teenager, not too big and not too small.

I tried beating on the window right next to it’s face but that only deterred him for about 3 seconds so I got out the 12 gauge shotgun and took a shot into the air on the back porch (we would NEVER kill the bear or actually shoot him unless he was threatening our lives). The sound made him start to run for the tree line but after a few steps he turned around and headed right back to the porch. I fired another one a little closer to the trees he was near and that one kept him away for the rest of that night.

It is in situations like these that I can’t help but laugh. Our life is just bonkers.

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On Saturday Jake had the opportunity to go to an Atlanta United FC game in downtown Atlanta. My brother lives on the outer edge of Atlanta so we decided that all four of us would make the trip and the kids and I would spend time with my brother and his family while Jake went to the game.

Malachi really enjoyed seeing his cousins and listening to them play. I tried letting Levi play in the grass, which as you can see didn’t go so well.

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My brother’s sweet dog Kenya snuck over and gave Malachi a bath of kisses. We pulled him off of Malachi and asked him if that scared him and Malachi animatedly signed “MORE”, smiling ear to ear. Malachi absolutely loves dogs!

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Jake and I adopted a dog back in 2006 and named him Boomer, a german shepherd mix. When Levi was born and then went on to spend nearly 5 months in the hospital we had to send him to stay with Jake’s parents in Ohio. Levi was discharged but we still didn’t feel like it was the right time to bring Boomer back home. We were afraid with all the wires Boomer might accidentally pull something out of/off of Levi. It was a tough decision but leaving him in Ohio a bit longer seemed like the best decision.

When Levi was cleared to go off daytime oxygen we talked about bringing him home. I have missed him so much, and I know Malachi has missed his puppy dog.

Unfortunately Boomer passed away suddenly on Friday night. I am so disappointed that I didn’t get to see him again. I know he is just a dog but he was such a big part of our lives prior to having kids.

Malachi was able to make it to school several days this week and on Thursday they attempted graduation pictures for all of the Kindergartners. They sent home the order form and I looked at it all week trying to decide whether to play the optimist and believe they will be exceptional, or play the rehearsed part of pessimist and assume the lack of a good picture would devastate me.

In true Leah fashion I made my mental pros/cons list. As I thought long and hard, my mind started to transition to that weird place that special needs moms tend to go sometimes. I caught myself considering “What if this is the only ‘graduation’ that Malachi will live to see?” These thoughts sound so morbid when I repeat them to myself, but the reality of them keeps them coming to mind.

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So I wrote the check and pre-paid for those silly graduation pictures.

Typical parents dreams about the long lives that their child will live. As a mom of a warrior, dreaming about a long life for my child brings me so much anxiety. I don’t ever pray for a specific number of years for Malachi, but rather I focus on the quality of life that he has during his time on earth. I pray that God blesses him with a pain-free life filled with joy! And I pray that if God chooses to allow Malachi to live a full, long life that surpasses mine that He prepares the way before him.

My biggest desire is that Malachi always feels loved, wanted, and valued. I pray that others see Malachi through the eyes of God his creator.

Luke 12:17 says “Consider how the wild flowers grow. They do not labor or spin. Yet I tell you, not even Solomon in all his splendor was dressed like one of these.”

There is so much hidden beauty that our eyes often miss when we search for the “perfect” in our world. Sometimes God’s beauty speaks louder in the mundane and even the ugly parts of our lives…the stark contrasts allow it to stand out.

Malachi is a beautiful wild flower, clothed in a beauty that only comes from God.

When my mind wanders like it does to possible outcomes for Malachi’s life I often feel a pang of guilt allowing those thoughts into my head. But my heart needs to process these things and allow these brief moments of mourning.

Please be in prayer over Levi this week as we prep for his surgery #22 and #23 (I think…I might have lost track). The surgeon will be working with the muscles of his right eye attempting to straighten it out a bit. We will also be scoping his throat to check his vocal cords to see if there is any new movement or anything else we can trim in his airway. I am starting to feel anxious about surgery day which leads to an emotionally exhausting week for all of us!

Please join us in praying for miracles and routine, best-case scenarios. These are expected to be outpatient which is always a blessing.

Much love to you this week,

Leah

 

 

Promises

Happy Easter everyone!

And I am happy to report that Levi tolerated the bow tie! And with his curly hair it gave him a very sophisticated Albert Einstein look.

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In years past we have blazed through Easter without a second thought to the gimicky side of things, but on Thursday Malachi came home from school with a bag full of Easter eggs (dinosaur ones at that!) and he was so excited to open the eggs and find candy inside. He was so intentional with his movements to break each one open and was giddy with anticipation about what might be inside. I took a butter knife and shaved all of the candy into melt-able slices for him to snack on. I asked him if he wanted to share some chocolate with his brother and he was very quick to tell me no. He did sign that I could have some though, so we are making progress on our sharing.

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Seeing his joy over the eggs reminded me that I need to do a better job at creating memories and experiences for Malachi. It is easy to assume that he won’t get into holidays if I don’t build them up but somehow he seems to know a whole lot about them. The only thing I can think of is that he gets the concepts from his cartoons.

 

So off to the store I went to build an Easter basket for each of the boys. They each got a book, bubbles, candy, and a special toy. Malachi couldn’t contain his excitement so I caught a quick video to share with you:

You all know our history with family photos- it rarely goes well. Today was no exception, but the laughter I experienced looking at each of these photos made it worth it. We even caught a few with Malachi’s “Hulk” tummy tube cover showing.

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Tonight our church hosted a community outreach event and set up different egg hunts for different ages and abilities. Malachi and his other wheelchair buddies had an egg hunt with balloons taped to the eggs so he would be able to snag them easily from his chair. With Jake’s help he ended up with a handful of balloons and eggs.

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He has been ecstatic about those silly balloons!

Levi also got in on the action getting a handful of eggs. I was busy getting the other hunts started so Levi’s best buddy from church offered to help.

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As you can see, Levi is still doing great off of oxygen during the daytime. The oxygen concentrator that we have in our home is big, noisy, and spits out a lot of heat. Since it isn’t being used in the daytime I now flip it off during the day. One night this week I completely forgot to turn it back on and headed to bed. Levi was asleep and stayed at really high levels so I didn’t even realize the oxygen wasn’t on until he had a quick dip down to 92 (anything above 88 is still considered acceptable). We are seeing some huge improvements!

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I am absolutely determined to get this kid wire free. This week I have been trying to come up with a plan to keep him from being hooked to his feed bag 18 hours a day. Step 1 has been increasing how much volume he gets pumped in him in an hour. I don’t want him to be miserable with something his tummy isn’t used to so this has been a slow process.

I have also been trying a few bolus feeds here and there. With a bolus feed you simply hook up a syringe and pour in some milk. Instead of a machine slowly sending it in over a few hours, gravity takes it into his tummy over the course of about a minute.

This carries risks for Levi; if I send in too much at once and he vomits there is a chance he can’t protect his airway (since his vocal cords don’t move) and it would go into his lungs. I have only been doing one hour worth of food (2 ounces of milk) at a time and ONLY when he has a completely empty tummy. So far he has tolerated it very well! We will keep fiddling this week and trying to make some progress.

Malachi has been having some gut issues and we aren’t quite sure what it may be. It has been going on for several weeks but with no other symptoms I have been hesitant to take him into the pediatrician’s office. I spoke with his GI doc this week and he had me bring some samples by for testing. I am hoping we get an easy answer.

And as if our week wasn’t crazy enough, the bears are apparently out of hibernation and stopped by for a visit on Tuesday night. They usually come by the house between 12am-4am but this one came by shortly after Jake got home from soccer one night around 10pm. I had cooked salmon for dinner and he must have caught a sniff of it in the wind. So back into high alert mode for the Carroll clan! We have some security cameras set up outside now so hopefully I will be able to get better pictures than last year.

Malachi and Levi have been two mischievous brothers this week and are learning how to tag team to accomplish things.

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When we decided to go the gimicky route for Easter, I talked a lot with Malachi about the holiday and what it meant. I told him that lots of kids like to use their imaginations and pretend, just like he does when he pretends to be a superhero. And they pretend that their is a big, giant bunny that brings an Easter basket to their door and that’s a big reason of why they get excited about Easter.

I explained to Malachi that we know that the bunny is pretend, and instead we choose to celebrate how much Jesus loves us! I think he is a bit too young to understand the details and the “why” of Christ’s death so we just focused on the great love that Jesus has for Malachi.

Malachi is so eager to learn these days, so as I talked to him about all of this he listened very intently. I always wonder what questions swirl around in his beautiful little mind. I can’t wait to have conversations with him one day and hear his thoughts on things instead of guessing at them.

This morning as I processed the significance that this day brings, I found myself thinking about the day from the perspective of one of his disciples.

Christ hinted several times to them about how he was going to die and rise from the dead three days later. I want to give the disciples some credit here and tell you that Christ used words that confused them, but that is just not true. In fact, the words He spoke were very plain and simple:

“Now Jesus was going up to Jerusalem. On the way, he took the Twelve aside and said to them, 18 “We are going up to Jerusalem, and the Son of Man will be delivered over to the chief priests and the teachers of the law. They will condemn him to death 19 and will hand him over to the Gentiles to be mocked and flogged and crucified. On the third day he will be raised to life!” (Matthew 20:17-19)

These word must have fallen on deaf ears, because Christ’s death on the cross wrecked these men. Their hearts were mourning over the loss of their friend, their teacher, their Lord. They were so confused…wasn’t this man supposed to be THE ONE that changed everything?

As I read this scripture today and processed their emotions I realized how relatable the situation was to me in my spiritual life. How many times has God spoken to me with a promise, then something happens that didn’t lead to that outcome and I begin to question and doubt. I even begin to panic, much like the disciples did, instead of trusting that He would make good on that promise.

But here’s the thing….God always keeps His promises. Every single time. Without exception.

When Malachi was a few weeks old and fighting for his life in the NICU I remember vividly laying in the bed at the Ronald McDonald House and praying that God would restore Malachi’s brain and make it whole. God spoke so clearly that night and said “It has already been taken care of.”

The next day I strutted into the NICU with my head up high, knowing that they were about to witness the miracle that God had shared with me the night before. Malachi had a brain scan and the doctor came in to deliver the results. I was so confident and so sure. But the doctor explained that the brain damage was much worse than the previous scan and more of Malachi’s brain had died off.

When I look back, I see that as my “disciple moment”. That moment rocked me. This wasn’t what he was supposed to say. This wasn’t how it was supposed to go.

There are two ways you can look at situations like these:

#1 Get frustrated that God didn’t keep His promises

   or

#2 Recognize that the promise is still on it’s way

Part of faith is always believing in the promises. It is hearing about what is to come and believing with all of your heart- and not just believing it but waiting and watching for it.

Faith is expecting…even when the promise seems impossible. My faith tells me that Malachi’s healing has already been taken care of, but exists on a timeline that is hidden from my view.

Maybe this whole concept feels very unrelatable to you. Maybe you haven’t had a Ronald McDonald House Moment and heard God speak. And that is absolutely okay. For me, it is a rare occurrence and one that still absolutely fascinates me.

But God speaks through scripture! Have you read His words and looked for the promises in them? We can’t expect God to speak to us if we aren’t seeking.

My challenge for myself this week is to seek more of God and listen to the things He is pushing my heart and mind toward. To listen to his promises and strengthen my faith enough to fully believe that He will see it to completion.

And boy, am I thankful that He kept His promise to the disciples on that third day. What a glorious day that must have been.

God bless you this Easter,

Leah

 

 

 

 

Humpty Dumpty

One of the things I try hard to focus on each week in my blog entries is being authentic. I could paint you a pretty picture with carefully chosen words about the beauty that blankets our days. While there are breathtakingly beautiful moments every single day, there are also those moments that twist my heart in painful ways. While I can’t eliminate all the ugly we do try desperately to make sure the good outweighs the bad.

This week we had to put a lot of effort towards that balancing act.

Let’s start with some moments of beauty. Malachi got the chance to paint a horse at his therapy session this week. Once you know Malachi you learn how to read his looks. You can tell in these how focused he was. He is very much into writing his letters these days, so writing them on a horse was an even bigger deal!

Levi has been pulling himself up to standing all week! He also has lots and lots of looks to offer…as you can see, he has the look of determination down pat.

Levi also got to go on some boat rides around the house this week; here is a video of his adventures:

Malachi was all smiles at one of our soccer games this week. I love that he smiles with his whole face.

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Levi was upgraded to a big boy car seat! Before I get any concerned emails about chest clip placement please know that we were in the kitchen when this photo was taken, simply working on strap height adjustments before we put it into the car. We are safety conscious, so don’t fret!

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The boys looked particularly fancy this morning for church. I have matching bow ties for their Easter outfits next week but I suspect Levi won’t be a fan.

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Oh Levi, always watching. Always.

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Switching gears to the rough patches…

I met with Levi’s eye doctor this week to talk about treatment options for his eyes. Levi was born with a congenital airway birth defect called bilateral vocal cord paralysis. At some point in the first few weeks in the NICU he went without sufficient oxygen and part of his brain started to die off. The spots of damage are very small (based on the scan at 3 weeks old) but we aren’t entirely sure how these spots of damage will affect him long term.

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We have discovered though that his brain damage is affecting his eyesight. He has two different eye issues, the main concerning one being that his eyes do not work together to see things. This is simply a brain wiring issue, and there is no way for us to ever correct that issue. However there are some things we can do to try to help get both eyes focusing on the same thing; the goal of this being that his brain recognizes the benefit to seeing one thing with both eyes and re-wires itself.

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Levi will undergo eye muscle surgery on May 3rd. At this point we are only going to operate on the right eye slightly but recognize that we may have to in for several more of these surgeries before we get it “just right”. This is also one of those issues that can reoccur at any time, any age. If we do not correct it he will not be able to develop depth perception.

Both eyes are also a little “lazy” so we are supposed to be patching each for 30 minutes a day until they get stronger. The worry is that one eye will overpower the other and vision loss in the weak one will occur.

We take lots of pictures of Levi and at least 70% of them get deleted because his eyes are a little wonky. Here is an example; nothing too crazy, but slight enough to recognize. In this photo it is the left eye turning in but most times it is the right.

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We finished up the eye appointment with a whole three hours to kill before our next two appointments. There is a big mall nearby and I thought the boys would like all the busyness that malls can bring. We walked around the mall a few times, ate at the food court, then headed back out to the car to leave for our appointment.

I was literally thinking “Wow, I just rocked that mall trip!” And as I lifted Levi from his stroller to put him in the car seat I heard a loud pop. I looked at his face and it contorted into a grimace of pain. I sat him back down immediately, worrying that his stomach tube had popped out but not wanting to actually look as the whole idea freaks me out.

I reached my hand onto his tummy and swiped it to find it not only flat, but pouring out milk. The tube was no longer there. My heart started to beat fast as I looked for it, and both Levi and I spotted it at the same time. He reached to grab it and put it in his mouth, which made me start dry heaving. I snatched it away before he succeeded, making him cry even harder. The harder he cried the more the milk inside his stomach continued to squirt out.

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At this point I was mentally trying to grasp what to do next. I have been trained on changing their tubes, but interestingly (not the right word) enough I had just taken their emergency tube kits out of the van and put them in the house two days before. I looked for a syringe to deflate the balloon and try to re-insert it but couldn’t find anything.

The tube has to be reinserted within 1-2 hours or it can only be done surgically. I was 45 minutes from home/spare tubes and only 30 minutes from the hospital so off to the hospital we went.

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Levi munched on his toes while we waited, likely starving since all of his tummy contents had emptied. We finally got it reinserted within the time frame and all is well. I have learned my lesson and put their spare tube kits back into the van!

On Thursday Malachi had some adjustments done to his wheelchair. We want to preserve Malachi’s body from long term positioning issues, but in order to do that we have to use horrible looking devices. We recently got a special positioning collar that holds his head up. It definitely does its job, but I find myself having a hard time actually putting it on him as I don’t want him to be miserable. There is just no way that can be comfortable.

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Levi also met with pulmonology on Thursday…lots of trips to the hospital this week! Levi’s sleep study results were excellent with zero spells at a half liter at night! His carbon dioxide retention levels were still in a completely normal range.

So switching back to a good…

Levi has been cleared to trial off daytime oxygen! We are on day three and so far he has done wonderfully. We are keeping him connected to his pulse oximeter to monitor his levels. When he is awake his oxygen saturation stays at 100 and when he is napping it is between 96-98. When he goes into a deep nighttime sleep we put his oxygen back on, as he isn’t ready for that yet.

It feels SO GOOD to have one less wire to worry about. He looks so much different!

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Since Levi will be going under anyway on May 3 for eye surgery we are going to try to coordinate his throat scope for that same hour. It is always nice to be able to combine surgeries and have less anesthesia rounds.

Malachi has started playing a new game of waiting until we have a full syringe hooked to his tummy tube and flinging his fist to punch it out of my hand. It then flies all over him, which he just giggles at. It has been a messy week. Little stinker.

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I know I mention this often in my blog, but one of the biggest things I struggle with is disappointment. I have this picture in my mind of how things will go and inevitably they never go that smoothly. The disappointment in those moments makes me so angry…like throw things across the living room mad.

This week I had a whole lot of disappointing moments to work through. By the time Friday rolled around I was on the verge of an emotional meltdown. I kept feeling it coming on and tried to regain control only to have the waves hit me hard again.

Dealing with disappointment is the most damaging thing in my relationship with my kids, relationship with Jake, and relationship with God. It brings out a side of me I do not like.

Today is Palm Sunday, the day that the town of Jerusalem welcomed Jesus as he rode into town on a donkey. They waved palm branches to honor him, laid their coats down on the road for before him, and exuberantly shouted:

“Blessed is the king who comes in the name of the Lord!

Peace in heaven and glory in the highest!”

Luke 19:38

 

The people were all so excited that the prophecies they had heard about all of these years were finally going to be fulfilled! Here was the king they had been looking for…they one they were promised long ago.

And just days later they would demand that he be crucified, nailed to a cross. And you know what likely played a part in that sudden change of heart?

Disappointment.

This morning there was a minor emergency with the new children’s director and she had to leave the service quickly. On her way out the door she explained that she was leaving and asked if I could cover children’s church for her. I had three minutes to figure out what I wanted to teach these kids, and this concept of disappointment has been laying so heavily on my heart.

I talked to them about the significance of Palm Sunday and as we talked through Good Friday one of the kids interrupted and asking “Ms. Leah, why did the people love Jesus then hate Jesus so much?”

I explained it like this…

What if I told you Humpty Dumpty was going to come into the room for a visit. He was going to come in and sit on a wall, and likely fall, and all the kings horses and all the kings men wouldn’t be able to put him together again. That’s the story we all know, right? We have heard it over and over again as children.

What if that door opens and in walks Humpty Dumpty- the snowman.

The kids all said “No, no, but he is an egg!!”

But is he an egg? There is nothing about the story that tells us what he looks like, or what he is made out of. It is something that has been passed down in illustrations that people have put in storybooks. It is something that our parents told us, or an image that we created in our minds.

Maybe Humpty Dumpty was actually just a snowman.

I explained to the kids that the people in Jerusalem had heard this story for years and years about the king that would ride town. They were looking for a king who would swoop in and establish his kingdom. A man that rode in on a strong white horse, adorned with jewels. They likely pictured someone authoritative, not like the meek and humble man that rode in on the back of a young donkey. They pictured a king who would rule with an iron fist, not a man who taught to pray for those who persecute you.

The man they saw in front of them no longer fit the picture they had created in their minds. And just like I do when I am disappointed, they got more and more angry.

I don’t think that it is sinful to create ideals in our minds. It isn’t a sin to long for things to turn out a certain way, or to even pray for specific results for a request. To the contrary, I think it brings God joy to hear us share glimpses of our hearts with him.

But when our ideals don’t match God’s then the slope can turn slippery. It is in those moments that we are reminded that God is guiding us in a very calculated and specific way, even though the scenery doesn’t match what we had pictured in our minds.

I will continue to struggle with disappointment. It is a big part of my life, and each and every day my boys aren’t healed by God I feel a flash of that pain. But my responses are something I do need to have better control over, and that is something I will be in prayer over this week.

The Lord is near to the brokenhearted and saves the crushed in spirit. -Psalm 34:18

Crushed in spirit is such an accurate way to describe our week. But as this verse says, God is right next to my broken heart, still holding my hand and leading me to green pastures.

My prayer this week is literally Psalm 23:

The Lord is my shepherd, I lack nothing.
He makes me lie down in green pastures,
he leads me beside quiet waters,
he refreshes my soul.
He guides me along the right paths
for his name’s sake.
Even though I walk
through the darkest valley,
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.

You prepare a table before me
in the presence of my enemies.
You anoint my head with oil;
my cup overflows.
Surely your goodness and love will follow me
all the days of my life,
and I will dwell in the house of the Lord
forever.

I pray that this week He makes me lie down in the green pastures and rest in His goodness and HIS control over my life, even when I am crushed in spirit. I pray that He refreshes my soul and allows me to watch in awe as He overflows my cup.

I pray that you too have a Psalm 23 week. And if you are crushed in spirit that you will find the hidden blessing that it brings as it causes us to draw nearer to God.

Much love,

Leah

 

 

 

 

And If Not

In true Carroll family fashion we jam packed our schedule this week with medical appointments and fun!

As I have admitted several times before, I am a recovering control freak. Against my will, I have really had to let go of those urges to control every detail of life and learn to go with the flow. The special needs momma life doesn’t allow me to share emotions with anything other than my kids. But I still get a thrill from establishing routines and successfully implementing them!

Mondays have become a routine acceptable day with work in the morning, physical therapy sessions for each boy around lunchtime followed by a trip to the grocery store. But the highlight of my Monday is having a “lunch break”. Special needs mommas (well, mommas in general) don’t get the luxury of established mealtimes. I usually get to town for therapies with 8 minutes to spare and if the line is short enough I run through the Chick-Fil-A drive through. And then I sit for a glorious three minutes and eat chicken in the parking lot at therapy. It is a little odd that parking lot chicken brings me so much joy. It actually has nothing to do with the chicken and more to do with the success of being able to eat at a normal and acceptable time.

Tuesday we met up with Malachi’s High School Robotics team to watch them demo the competition robot they built. Malachi loved listening to the robot as it sounds very much like his Wild Raptor ride that the team adapted for him.

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Speaking of the Wild Raptor, the weather finally cleared up enough for us to start taking it outside! Malachi loved the independence it gave him to go way ahead of momma on our walk.

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Then tonight we took it to a friends house so he could show off his moves.

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While Malachi is not currently sick, he is still recovering from last weekend’s junk. When he gets something like a common cold it can mess with him for several weeks before he gets completely back to normal, which is why we are extra cautious about germs. Nighttime is hard for him as laying down makes it hard for him to breathe. I have been propping him up in the bed next to me but he is still waking up 8-10 times per night panicky because he can’t catch his breath. He signs to me that he is sad/scared and I hold him until he calms back down. It has been a long and sleepless week for Malachi. His seizures are also very intense each morning as he works to process the congestion that settled in overnight.

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At feeding therapy this week he signed NO to everything that we offered him. He even declined chocolate, which is very unlike him. The only thing he signed YES to was blue juice- he loves to drink it because it turns his tongue blue which he finds hilarious!

We are still working on weaning one his seizure medications and one of the improvements we have seen is his eyesight. Malachi has Corticol Visual Impairment meaning his brain is what is causing him to be blind- not a structure issue. The more we reduce his seizure meds the more that fog lifts from him. After his horse therapy session on Wednesday I got on the highway and Malachi jumped in his car seat when we passed a semi. He usually can’t see those in his peripheral so that is huge!

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Levi is still wanting to be attached to me 24/7 which is making therapy sessions difficult. He doesn’t want to work with any other adult, especially if it means he can’t be in my arms.

 

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We had a small victory tonight when he contentedly sat with a friend from church! Baby steps.

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Levi had a developmental evaluation done on Friday to see where he is at with his milestones. We don’t have the results quite yet but even this week we are seeing some new things. He is starting to pull up on things and stand for brief periods of time. I took this video to share our success with you:

We also resumed our feeding backpack training sessions this week with a cool new Spiderman feeding backpack. I just put the feeding pump and bag inside and it toppled him like a turtle each time he tried to move with it on. We will keep trying though!

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This week Levi has some big appointments with the eye doctor to talk about eye surgery and the pulmonologist to get sleep study results and schedule throat scope in Cincinnati. Malachi will also have some modifications done to his wheelchair, and of course lots and lots of therapies.

We also had lots of play time this week. Levi braved the swing with Malachi for the first time ever.

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We also did some sensory play with spaghetti, and he threw it all over Malachi. We were still finding chunks of it on Malachi’s head and outfit an hour later.

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Saturday was a beautiful day so we went to the soccer fields to watch my 6 year old niece play. Malachi practiced his cheers from home, shouting “GO”. This sounds a little crazy, but it was the first time Levi sat on grass. He went into sensory overload and didn’t enjoy it but maybe it will get better over time.

A few weeks ago I started following a family that had two children with trachs and extensive medical needs. I believe firmly that every special needs momma needs a network, and this momma’s story touched my heart. They recently lost one of the two boys and were selling shirts to fundraise for an adoption. I ordered one for Jake, Malachi, and I and this week the package came in the mail.

Jake came in from work and picked up the package that I had not yet opened. He asked “What is this?” and I explained that they were the t-shirts I had ordered from this other family. He opened the shirts and read the front which reads:

“And if not, He is still good.” based on Daniel 3:18

As Jake read the shirt tears welled in his eyes. Those words mean so much to our sweet little family. And what a testimony they are to the faith of this other family that lost their warrior.

Our life thus far has been a “If not” scenario. We have prayed, begged, pleaded, and bargained for miracles from God for our boys. We have struggled to breathe through our sobbing, shaking uncontrollably from head to toe with uncertainty. We have dirtied our knees praying on the floors of hospitals for miraculous healings that never came. We have lived the “If not”. Every day that I wake up to Malachi having yet another seizure is an “If not” day. Every squeak from Levi’s little throat when he is upset reminds me that he is still an “If not” kid.

God has not yet healed my boys.

The “If nots” look different for each and every one of us. They are the things in our lives that we have asked God to change or remove but they still remain. They are the huge requests that continue to go unanswered to our human eyes.

I don’t know why God hasn’t healed my sons yet. And while I still firmly know and believe that He can, we are still in the “If not” phase of life.

The “If nots” are what make or break your faith in God. Those are the moments that you make a choice to continue to stand firm in your faith or allow the disappointments to shatter that faith.

But as these beautiful shirts remind me: “And if not, He is still good.”

God’s goodness isn’t based on whether we get the things we think we deserve from him. We must trust that God’s plans for us are bigger and greater than our own.

We must believe and trust that there is unimaginable purpose in the “If nots” of our lives.

And even when the “If nots” make us weak in the knees and take our breath away, our faith in God’s plans must be strong enough to shout to the world that He is still good.

So tomorrow morning I will most likely wake up to Malachi having another large seizure…a blatant and physical “If not” moment that reminds me that his brain has not yet been made whole by God. So tonight I will ask God for the grace and strength to honestly proclaim that He is still good.

I want to challenge you to speak those same prayers to Him over your “If not” moments this week.

And please say a prayer for our big appointments this week. Scheduling surgeries is always hard on my heart. I know the surgeries are coming, but when they are given a specific date and space on the calendar it even harder to process.

Much love,

Leah

 

It Will Not Return Empty

Levi is “helping” me type this post so if something seems amiss it is likely the result of his crazy fast raccoon hands.

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Which leads me to the next  two words: separation anxiety. Part of me feels flattered that Levi wants to be touching me 24/7. Then the stressed out mother side of me can’t quite figure out how to appease his 16 month old demands and keep up with Malachi’s needs.

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The ever creeping in mommy guilt tells me that this is a result of his nearly 5 month hospital stay in Cincinnati. No child should ever have to wake up and not have mommy close by to comfort him. I have to purposefully not allow myself to mentally go back to those months- it puts me in a dark place and reminds me that I couldn’t be the mom I wanted to be for both of the boys.

We have set up Levi’s crib just a few feet from my side of the bed so I can watch him closely at night. He is hooked up to all of his monitors but I am still an anxious mess with the wire management and safety issues. Last night I woke up around 3am and he was silently leaning as far as he could, arm through the slats of the crib to try and touch me. At first it freaked me out then I couldn’t stop laughing. Sweet little Levi.

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I invested in a portable baby play yard for him, particularly when I am at work. He discovered the copier recently and loves to open and close the drawers when mommy is printing important papers. Thankfully he tolerates it pretty well as long as he can see me at all times!

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This week we have started trying to get Levi used to a feed backpack. He is on his feeds for 18 hours a day and chasing after him to make sure the bag doesn’t get caught on things when he crawls is increasingly difficult. If we can get him to start wearing his pump and feed bag then that safety factor is eliminated. It didn’t go so well, but we will keep trying! And ignore the mess in the background of every photo I post. Toddler life.

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Malachi had a great week that morphed into a rough weekend. He woke up on Friday night with a fever that stuck around through the weekend. He also has some respiratory junk going on causing his seizures to increase. Even when he is sick, he stays in great spirits so we have been camping out at home all weekend watching cartoons and playing with toys. Lots of Mickey Mouse Clubhouse “Hot Diggity Dog” dancing.

On that note, there are a few cartoons we avoid because they have so many physical commands, like “Everyone get up on your feet and jump!” We never want Malachi to feel the sadness of not being able to do what they ask, as he is very aware of what they are asking him to do.

One of the shows we limit watching is Little Einstein. He LOVES that show but they ask for your help to power their rocket. You have to pat your hands on your lap and increase the speed to get the jet to go. With Malachi’s vivid imagination he takes these tasks very seriously so we always make sure to help him with the actions.

Since he hasn’t been feeling well we thought we would treat him and let him watch several episodes. At one point I forgot to pay attention and help him power the rocket, and he wildly started hitting my leg to remind me. It is in these moments that I see the excitement of a six year old shining through.

He has been extra opinionated about what he wears lately, which is also fun to see. I give him two options for each thing he gets to pick out: his tummy tube dressing, his shirt, and his bib. He uses his NO sign to tell me which one he doesn’t want. He takes such pride in what he picks out to wear and we love giving him the independence of making that choice. As you can see, we are pretty biased towards superheroes right now.

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Both of the boys rocked their appointments this week! Malachi’s hippotherapist has been blown away lately by how well Malachi is progressing. She told me with wide eyes this week, “He is just a completely different kid!” This week he got to feed his horse some treats which brought a big smile to his face!

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Malachi had an appointment with his epileptologist (neurologist that specializes in epilepsy). This was our first appointment with him since we started Epidiolex (the CBD medication) about 5 months ago. We talked about the pros and the cons that we are seeing, and how mostly it is all positive progress. The CBD medication can mess with the absorption rates of other anti-convulsant medications, particularly the one that Malachi takes at night. We are going to try to wean that one a bit, watching him closely for any increase in seizures.

The weaning process is always tricky. And with his sickness hitting at the same time as our med change I am not sure what to blame.

Whenever we have appointment days in Chattanooga I try to find something fun for the kids to be excited about. We have an annual pass to the small zoo downtown and the weather was beautiful so I told Malachi we would stop by to see his jaguar friend.

Here is a photo with the new anteater.

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Levi rode in his big boy stroller for the first time at the zoo and the perspective changed things a bit for him. He was terrified of every animals he saw, screaming when they came close to him. The shrieking made Malachi laugh, so between the animals and his wild brother he had a wonderful time!

This picture of them looking at the chimpanzee sums up the emotions well. Curious Malachi, angry Levi.

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His jaguar friend was sleeping in the sunshine, and Malachi can only see the animals when they get close. He was visibly disappointed that he couldn’t see him so we set out to find an animal that he could see. His second favorite animal there is the snake, but only because they let him hold it one time. Third on the list is the black crow….random I know. But on our first ever visit to the zoo the crow asked Malachi “Where do you go to school?” I genuinely thought I was on a hidden camera show and asked a worker about it. She explained that the crow had picked up several sentences and words and could actually talk quite well.

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Malachi likes to shout HI to the crow, and without exception the crow always talks back to him. They are good buddies. And of course, Levi was terrified out of his mind that the bird talked which is guess is totally relatable. Needless to say, our zoo excursion lasted about an hour.

I always thought I would be a frugal, hard nosed mom that didn’t give in to her child’s begging for overpriced souvenirs from the gift shop. But instead I have become the mom that spends $5 on a llama shaped ink pen, just because it makes Malachi smile to pick out something special. That llama pen brought him so much joy as I told him he and daddy could work on writing their letters later after dinner.

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We had all sorts of fun things planned for the weekend, but when Malachi gets sick things come to a screeching halt. Now that he has his g-tube there is a little less pressure on us as we know dehydration won’t become an issue. But we still get anxious and watch him closely for anything that warrants a hospital stay. So far so good.

Sometimes this halt in life is a hidden blessing, as we get to throw all plans out the door and spend time together at home as a family.  Friday was a long night for sick Malachi and momma so on Saturday I needed a little mental break. I snuck out (of course when Levi wasn’t looking) and drove out to the Mennonite market to get some fresh bread and cinnamon rolls, picked up a pizza, and headed to a Redbox to rent a movie.

We also caught up on baths, laundry, bill paying, grant applications, and a little bit of cleaning! Check out this post bath hair; curls like his daddy:

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Every now and then Malachi’s “Chick-Fil-A post” from 2017 flares back up again on Facebook. I don’t understand technology well enough to know why or how this happens, but I can always tell based on the amount of friend requests I suddenly get. Last week his post flared again getting another 33,000 likes in about three days, taking the total likes on the original post to 246,000. Each time this happens I always wonder what God is up to!

When I think back to the day I wrote that post I laugh to myself…God had been prodding me to write it and I ignored Him. He prodded and prodded and prodded. Usually when He lays something on my heart to write, it has a scripture within it. But this one didn’t mention God. It is literally one of the only big posts I have done on Facebook that doesn’t mention Him.

It was two days after the encounter in Chick-Fil-A that I sat down to write the note to “The mom of three…” (https://www.facebook.com/photo.php?fbid=10100707570909686&set=a.841223295276&type=3)

I choose to believe that nothing in this life is coincidence. There is a plan that God has for each and every one of us, and my plan involved being pregnant and craving chicken that specific day. I look at the number of other special needs moms that viral post connected me with and I see the work of an all-knowing God.

Early on in our journey with Malachi and his extensive medical needs, I remember feeling overwhelmingly alone. As the years went on I started to get glimpses of other warrior children fighting similar battles and my scope widened. I remember seeing a photo of another child with Malachi’s specific HIE diagnosis and being blown away with their physical similarities.

God has used that post to allow me to help encourage other moms all around the world in similar journeys. I have exchanged hundreds of messages with strangers concerning medical diagnoses, insurance, equipment, and Jesus! That support network is something I craved early on and couldn’t find, so to be able to encourage and uplift others is so special to me.

As God continues to unfold the plan He has for my little unique family I can’t help but smile, realizing that this life is the opposite of the one I had planned…but in so many ways it is more beautiful than anything I could have ever imagined. I see glimpses of the nature of God in Malachi. And I see the power of God’s in simply obeying the tiny things he asks us to do….like write a silly Facebook post to the Chick-Fil-A mom.

Isaiah 55:8-11 says

“For my thoughts are not your thoughts,
    neither are your ways my ways,”
declares the Lord.
“As the heavens are higher than the earth,
    so are my ways higher than your ways
    and my thoughts than your thoughts.
10 As the rain and the snow
    come down from heaven,
and do not return to it
    without watering the earth
and making it bud and flourish,
    so that it yields seed for the sower and bread for the eater,
11 so is my word that goes out from my mouth:
    It will not return to me empty,
but will accomplish what I desire
    and achieve the purpose for which I sent it.

WOW! Take a minute and read verse 11 again. If God is calling you to do something- even as insignificant as it may seem- choose to have faith that, with God as the catalyst, it is about to accomplish something big. Like the boy that brought his lunch that day that Jesus fed the 5,000…you never know what meager thing you will have to offer to the Lord that He plans to multiply.

He can take our imperfect scraps, like my Facebook post, and multiply them into beautiful, faith changing moments for others. All he needs is a willing heart, one that trusts that His ways are higher than our own.

My prayer is that God gives you and I opportunities to do the small things and an obedient heart. And that He continues to ripple effect those small things and make a wave that our minds can’t even fathom.

Much love,

Leah (and the now sleeping soundly Levi)

 

Boxed Up Chicken

I have stared at the computer screen for a solid five minutes trying to figure out where to even start, and all I could come up with this weird title- which I will explain about a bit more later in this blog.

I tried to get some cute photos of the boys this afternoon after church. While it was mostly a fail I did manage to get some sweet smiles over the course of several pictures.

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Another wacky week of therapies and appointments. I feel like at some point I am being redundant by highlighting all of our medical appointments and therapies, so I will focus on the noteworthy ones. Levi had his repeat hearing test this week, a suggestion made by the NICU in Cincinnati upon discharge. With his medication history he was pre-disposed to having hearing issues, but thankfully he passed! I can’t help but laugh at most of our appointments when they tell me what the requirements are. For this particular one she explained that he couldn’t be moving or crying while she put an ear plug in each of his ears for roughly a minute each.

Sometimes I wonder if I am in some weird psychological experiment to see how many “impossible tasks” medical professionals can throw at a mom until she breaks haha. Bring it on Sigmund Freud.

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The boys are still just as sweet as can be with each other. Levi has recently started to hold Malachi’s hand.

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While we were in Pigeon Forge last week on our getaway I ran by the outlet stores and stocked up on matching clothes for the boys. While I admit that I love matching them, Malachi genuinely gets a kick out of matching Levi. Malachi is about to grow out of the toddler sizes so buying them the same shirt in different sizes won’t happen again until Levi is Malachi’s age.

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And of course, most of the outfits are superhero themed since, well, they are basically superhuman kids. 🙂

Levi is still “crawling” and getting incredibly fast at it. I am worn out from chasing him around the house trying to keep him from pulling out his tummy tube or getting his wires caught on anything.

Malachi was invited to a friend’s birthday party, and since those invites are rare we tried hard to make it happen for him. Jake had a church event so I was solo with both boys; Levi is officially into a separation anxiety phase and can’t be out of sight from me without losing his mind so handing him off to a willing friend isn’t an option. But we got there and settled in.

The birthday girls mom let Malachi in on a big secret that there was a full sized chicken in one of the boxes. Apparently the 6 year old had been asking for one for her birthday so they boxed it up for her to open. Malachi was grinning with anticipation while she opened her presents and the boxed up chicken did not disappoint. As soon as the box opened the chicken sprung out, grazing children in the head as it “flew” frantically around the room. Of course every child in the room began screaming in sheer terror as it looked for a place to land, eventually settling on the head of an older woman in the crowd. Malachi thought the whole scene was the best thing he had heard in a long time and couldn’t stop giggling.

I took this video a few minutes later- I think he was hoping that the next package would be another exciting chicken.

Malachi went to school three days this week, which made him one happy little boy. We saw one of his teachers in town this week and he was so excited to see her outside of the school setting.

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The weather here has been beautiful and the boys have been enjoying coming out to the soccer games this week! I have a new set up in the back of the van where Levi can crawl around and Malachi can sit in his special bean bag seat. My mom comes to supervise them and we park them right next to the field! It has been working wonderfully for now.

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I have a whole lot of nonsense to blog about tonight, and in no particular order so bear with me.

My first thought tonight was about the importance of choosing contentment. I know I talk about this a lot, but it is so very vital in the life of a Christian. There are so many moments in my day that I feel a mourning moment creeping into my soul as I think how things “should have been”. Truthfully, things like the birthday party this week are hard for me as I am surrounded by kids Malachi’s age all doing things Malachi “should” be doing. That lump in my throat starts to form as I watch them effortlessly climb and jump.

But then my pity party radar goes off and I take my eyes off the children and look at my Malachi, grinning ear to ear listening and waiting for the chicken in the box. The life that he knows is full of joy, and I have to remember to be grateful for quality of life Malachi does have. And if Malachi is content, then it only makes sense that I choose contentment as well.

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But contentment is a heart issue. It is something that only God can do as He had to transform your mind and heart. Contentment alone is easy when things are going well. But true contentment in less than ideal circumstances is indeed a gift from God that can only be manufactured by Him.

This Wednesday we started a new Bible study with the kids in our youth group and used this verse as our springboard:

Hebrews 11:13-16

13 All these people were still living by faith when they died. They did not receive the things promised; they only saw them and welcomed them from a distance, admitting that they were foreigners and strangers on earth. 14 People who say such things show that they are looking for a country of their own. 15 If they had been thinking of the country they had left, they would have had opportunity to return. 16 Instead, they were longing for a better country—a heavenly one. Therefore God is not ashamed to be called their God, for he has prepared a city for them.

Hebrews 11 is commonly known as the Faith Hall of Fame as it lists so many people acknowledged for their extraordinary faith. Reading through their stories is inspiring and we tend to stop at verse 13. But these verses are just as important for us to remember!

It mentions that even until the moment they died, they were still living by faith. But even more noteworthy is that they acknowledged that they were strangers on earth, looking for a country of their own. The more God works in the Carroll family the more I see the beauty and peace that comes in knowing that this is a temporary place for my family.

I find myself longing for a better country…a heavenly one. A place with perfect legs, perfect brains, and perfect vocal cords. A place without exhaustion and caffeine addictions.

But there is a reason that each of us have been placed on the earth. Do we recognize the significance of that mission? Do we see the opportunities God gives to us to share our faith with others? Do we look to be the hands of Jesus for others?

Are we treating this life like it is a temporary pilgrimage on our way to a heavenly home? Do our priorities in life and the things we focus our time towards reflect our recognition that this life is temporary? Or do we cling to the idea that this world should be about us?

I have been challenged lately by God to “pour myself out”. I laugh as I type this because if I shared a typical Carroll week with you would be blown away by the number of things we pack into a week. But God continues to ask us to do more. So we pour and we pour, and then we watch as God replenishes and uses the pouring moments to strengthen our own faith.

He keeps reminding me that this is not my home. But until that day comes I am called to give, give, and then give some more. And to do so without expectation of return or reward. Simply because that is what God asks of us.

My thought challenge for the week…are you pouring your life into others? In what ways does your life make a kingdom impact? Or are you more concerned with making your time on earth a comfortable one full of luxuries?

Are you trying to make this earthly pilgrimage a reflection of the heavenly life you desire?

Let me challenge you to pray about what you have been placed on this earth to do. What people has God allowed your path to cross with for a very specific reason.

I am literally going cross-eyed with exhaustion tonight but want to write more…I guess I will have to save those thoughts for next week!

God bless,

Leah

Gettin’ Away

Oh my what a week we have had!

Let’s start with the boring medical info. Monday night was the dreaded sleep study. I begrudgingly checked us in at 6:00pm and the wires were in place by 7:30.

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I counted the wires alone and there were exactly 50 glued to his head, face, and body. He also had two bands on his torso and chest. Levi was not happy during the gluing and wrapping process.

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This time around was different than his previous studies as we were trying to figure out what to turn his oxygen up to in order for him to sleep comfortably. He is safe at a lower flow but doesn’t stay in a deep sleep very long, so they wanted to try cranking him up. They started at 1/2 liter and the nurse did not turn him up throughout the night, which is a good sign.

That is the tricky thing about sleep studies- you have no idea if it is going well or not. All of the monitoring equipment is hidden from view except for the carbon dioxide output machine which was at a safe level all night. We will get results April 11 when we meet with his Chattanooga pulmonologist. From there we will schedule his next throat scope (called a microlaryngoscopy and bronchoscopy) in Cincinnati.

Levi slept pretty soundly; MUCH better than the last study. The test ends at 4:30am and they come in, wake you up, and take all the wires off. It is a rough way to wake up but boy was he happy when all of them were finally off. It took three long baths to get the glue out of his hair!

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Malachi ended up staying sick through Monday but since Levi didn’t seem to be coming down with anything we kept his therapy appointment on Monday. Tuesday both boys had feeding therapy. Wednesday both had GI appointments and Malachi had horse therapy.

I officially changed my first g-tube alone, and hated every moment of it haha. Oddly enough I am easily grossed out by medical things. This life makes me suck it up and fight through it but some things still give me a heebie jeebies. Changing Malachi’s tummy tube was no exception.

With all the medical appointments out of the way for the week and Jake on spring break we attempted our first non-medical getaway! As you already know, traveling with the boys and their gear is very challenging. I went back and forth all week trying to decide whether it was worth the trouble but breaks like this don’t come often so I finally pulled the trigger and booked a condo in Pigeon Forge.

We have to have a full kitchen with a fridge and freezer to accommodate medications, formulas, ice packs for feeding bags, and a sink for washing/sanitizing. We prefer ground floor in case of emergency and handicap accessible is always a plus.

Levi requires a large tank of oxygen per night (3 feet tall) and 1.5 small tanks per day. He uses an IV pole at night for his feed bag, his feeding pump, and a pulse oximeter to monitor his breathing and heart rate at night. Between both boys we administer 9 medications each day, all requiring syringes that have to be washed after each use. Then there are the bottles, feeding pump bags, formulas for each boy, diapers, tapes, g-tube dressings, and back up EVERYTHING. We have to think of every worse case scenario and prep for it, as most medical things we use can’t be purchased at just any drug store.

This time around we brought a 25 foot cannula for the hotel room so we would be able to move more than 5 feet from the tank. We also took that to the pool so Levi could swim with his oxygen on (more on that in a minute).

After I booked the hotel we started talking to Malachi about our big adventure and he was wide eyed with excitement. When the time came for us to officially leave he was wild! The first stop was to a dinner show called the Hatfields and McCoys. We had told Malachi a little bit about the show but we didn’t know what to expect.

Malachi LOVED every second of that show. They shot guns, had people clogging (dancing with loud shoes), dynamite, and his favorite- dogs jumping into a pool. He doesn’t see well so I made sure to narrate every scene. His imagination was on fire and he acted out whatever he was hearing. At one point two characters were fighting and Malachi intently listened, swinging his little arms like he was in the fight too. Seeing his excitement was heart warming.

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Levi screamed his head off in sheer terror for the first 30 minutes, wondering why we brought him to such a crazy place. Then after he settled down he watched the show intently.

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The next day we grabbed some lunch and went back to the hotel for a swim.

Malachi was shaking with excitement as we prepped for the pool. Levi had never been in a pool before so we weren’t sure what to expect. Thankfully he loved it!

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Malachi didn’t want to sit still for a picture and kept trying to swim away. This is his determined face. He loves the independence that swimming gives him and doesn’t want to stop for silly mom pictures.

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Look at those semi-straight feet! Progress!

Someone asked this week about swimming and their g-tubes, which is a great question so I thought I would answer it here for anyone else who might be interested. Most of the rules for g-tubes are contingent on the stomas, which is a fancy name for the actual hole that the device goes into…kind of like a pierced ear. We have to keep this area dry and clean to prevent infection or skin breakdown. Right now both boys have beautiful stomas with no skin issues (praise the Lord!) so we felt a little more comfortable attempting a public pool, although we will not do this often.

Lakes, rivers, and other bacteria ridden places are a no-go but properly cared for public pools (no public hot tubs) are okay if the stoma is okay. We asked about how often the chlorine levels are checked and felt that this place worked hard to maintain their pool, giving us a little more peace of mind. The stomach is a non-sterile environment anyway full of bacteria so it is a little more acceptable than say a surgery site.

Speaking of germs, in my neurotic Leah way I took my rubber gloves and hospital grade wipes and spent a solid thirty minutes sanitizing the germs out of our rental! Always a must!

We headed back to the room for naps, then attempted a late night comedy show with juggling, dog tricks, and all sorts of other fun things. We made it to the intermission before Levi melted down so we headed back to the hotel for meds and bed.

This is Malachi’s “listening intently” face.

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Levi did not like sleeping in a new environment and woke up in a panic several times a night. It was pretty pitiful to see the terror on his face.

Malachi takes weeks to recover from any respiratory illness as he doesn’t know how to cough and clear his throat. He wakes up coughing at least two or three times each night still and has to throw up to clear his throat. It is pitiful to see and upsets him every time. I am hoping this week he will be able to sleep more soundly.

We left his chair in the car one evening and had to improvise a bit, much to his amusement.

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Saturday morning we packed up and headed out, stopping by the Jurassic Jungle Boat Ride on the way home. It is a 7 minute boat ride through a pitch dark cave with animated life-like dinosaurs that jump out at you. We knew that would be a grave mistake with Levi so mommy and Malachi went and I narrated the dinosaurs for him. Because it was dark he was able to see a bit better than normal, but just listening to them was a thrill for him. His favorite part was two t-rex dinos fighting and he will act it out for you if you ask him, roaring and swinging his arms like they did.

He still hates the sunlight and wouldn’t open his eyes for our picture.

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Overall it was such a great trip for our family. Giving the boys “normal” experiences like these is something we need to try to do more often. Malachi was such a 6 year old, unabashedly excited about each new leg of our adventure. He giggled more in those few days then he does in a typical week, and that alone makes it worthwhile.

Levi is in a difficult stage (for us) and is extra whiny. He also wants to be mobile, butt-scooting all over the place, which isn’t feasible in public. He has to be within eyesight of me at all times or he will scream until he can’t breathe. We think he is cutting his molars so we are holding on to hope that this is just a phase. Don’t let the cute face fool you!

 

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He has also been trying all kinds of new foods this week! We are so happy with the leaps and bounds he is making.

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Anytime we leave our comfort zone we are reminded of how blessed we are to live in a small town where everyone knows our quirky family. When we are in new environments we tend to turn more heads, and this trip there was a whole lot of staring going on everywhere we went. I can handle most casual looks, but the hard-core staring that lasts longer than 3 minutes makes me so uncomfortable. There are curious eyes, kind eyes, judgy eyes, and disgusted eyes. I can tell you the type without even looking directly at them, and this trip was a mix of all of the types. I don’t know if that part will ever get any easier.

On to the devotional thought part of the post. I hope this doesn’t come off at all as arrogant, so please read with the right tone in mind…

Since Malachi’s birth six years ago, God has been doing something new in my life and I have watched in amazement as He has used me in a new and unique way. The Holy Spirit prompts me to write, and when He does I simply sit back and let God do the talking through me. I know that I sound like a crazy religious nut right now, and I don’t even know if I can accurately put into words how God writes through me, but I can tell you that when I read the words the next day I acknowledge that they are not my own. I literally do not recognize them. They are simply a message from God, using my story and platform to show glimpses of God’s heart to others.

I can go blog by blog with you and tell you which parts were written by Leah and which parts were written by God. He doesn’t take over every week, but when He does it is evident and purposeful. There is a distinct feeling that happens each time, and when it is finished I have such a sweet spirit overcome me. I always know there is an intended audience in mind and knowing that they will hear a word from the Lord brings me so much joy.

When Malachi’s Chick-Fil-A post went viral in 2017 that was a God post. He prompted and I ignored for two days. And through that one post we have been able to speak to millions about the value of life in the eyes of God.

I always wonder who the post is for…and the majority of the time I never get to find out…it really is none of my business. But this week as I looked back at an older post on Facebook, one that I know was written by God, I realized that it was exactly what I needed to hear. He prompted me that day to stop everything and write- I remember Jake getting annoyed because I tossed both kids at him and headed to the closet to type haha. The words pierced my soul as I read them, almost as if I was reading them for the first time. I thought I would share them with you again just in case someone out there needed to hear them again as well.

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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.

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How cool is it that God placed something on my heart 8 months ago that He knew I would need to hear today?!?
This week my thought provoking verse has been from Isaiah 43:
“Do not fear, for I have redeemed you;
    I have summoned you by name; you are mine.
When you pass through the waters,
    I will be with you;
and when you pass through the rivers,
    they will not sweep over you.
When you walk through the fire,
    you will not be burned;
    the flames will not set you ablaze.”
This has been my much needed reminder that God has called me by name for this life. I like that He states that first and foremost.
Then He goes on to the not so pleasant parts. The parts about passing through the waters, rivers, and fires. These are the things we like to think should never happen to us as followers of Christ. We feel like we should be exempt from any discomfort from life or potential suffering. We sometimes see these trials and sticky situations we find ourselves in as some sort of punishment from God.
But God is quick to confirm at the beginning that we are not to fear and that we belong to Him. The waters will rise, the rivers will pick up speed, and the fires will blaze. And we will go through each of those things. But we will never be overcome by them because we belong to God. We are simply commanded not to fear.
Looking back I can fill a book with times I have been in that river, a swift current rising over the bottom of my chin and my feet grasping for solid footing in the dark river below me. I can look back and find time and time again when I struggled to breathe, in the midst of a fire surrounding me. The thick and smokey air nearly overcoming my rational thinking as I fight to find a way out of the darkness. These times come and these times shake me to my core.
But we are commanded by God to not fear. To continue to stand firm and believe that God will see us through. We like to forget that the God we serve can extinguish the fire with a single thought, or drain a river down to a wasteland with a whisper. We are called to a life of faith over fear. It is in those panic moments that I need to take on the boldness of Christ and stop giving the darkness around me power to bring fear.
I don’t know what you waters, rivers, and fires look like. But whatever they may be, know that God is calling you by name. Don’t choose to lose sight of Him in the darkness.
Much love,
Leah

When Germs Attack

Let’s start with some brotherly love. We have been teaching Levi Eskimo kisses where you rub noses together. Levi has been doing it to Malachi which is so precious to see. And Malachi loves it!

As you can guess from the title, the Carroll crew has been under attack with sickness. Last Sunday night I posted the blog and within the hour Levi was burning hot with fever. As soon as 8am rolled around I started making all the necessary phone calls to cancel his appointments for the day. Then we watched and waited.

Thankfully he sailed through the sickness in about two days and this one did not affect his respiratory rate at all. He was extra cranky, but that has been the name of our game for the last few weeks…he is an opinionated little boy. Jake texted me one day this week and asked how my day was going and this picture was my reply:

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He likes to follow me around these days screaming until I pick him up. Or going after the trash can. We are officially into baby proof mode. I came home and Jake had rearranged the kitchen a bit haha.

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Levi is working so hard at so many things these days and I am proud of his progress! We have to go into lock down when sickness hits and with more time in the house we were able to tackle more one on one focused tasks.

Focus and proper foot placement is everything!

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Here is a video showing the progress we are making with spoon feeds:

Levi is still not safe to take liquids by mouth since his vocal cords don’t close to protect his airway. When we first started trying foods by mouth Levi would gag if something barely touched his lips. We have been working to desensitize him over the last few months with feeding therapy and he is improving by leaps and bounds. This video progress is huge!

Today he cried when we wouldn’t share our lunch with him so we strapped him into his high chair and let him have a snack too.

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As you can see, he was pretty pleased.

Malachi managed to avoid Levi’s sickness and our week morphed back into normal by Thursday. We made it down to the hospital in Chattanooga for Levi’s final synagis medication shot for the season. Houdini Levi has been wiggling so much lately and we are having to say “no no” to him frequently. As you can see, he isn’t a fan.

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Friday morning Jake called from work to tell me he thought he was coming down with something. By 2:00 that afternoon Malachi was running a fever of 102.5 and crashed fast. He has been having a hard time keeping food down and throwing up several times a day and multiple times a night. Even on fever reducers his temp is staying high. We are trying desperately to keep Levi from getting whatever Jake and Malachi have!

Here are some photos of sweet Malachi prior to the start of his sickness. I just love him so much!!

He has been asking for his feeds through his tummy tube almost every feeding time this week, making us think that he has a sore throat.

We also went to our favorite local restaurant on Thursday night for my free birthday meal (celebrated the big 3-3 this week) and Malachi got so tickled listening to the chickens jump up into the tree to go to sleep. I pulled out the camera to catch his joy:

Thankfully Jake is on spring break this week, so continuing to stay on lock down will be much easier. Levi has a sleep study tomorrow night, which I am dreading with a passion. We have already re-scheduled this study multiple times due to sickness and the next procedure on his airway is dependent on getting this study done so I am ready to get it over with.

We did something ambitious and booked a hotel for Thursday and Friday night this week to go on a little getaway as a family. I am hoping we will all be sickness free enough to actually get to go. Pigeon Forge is a two hour drive from here and we thought that Malachi might enjoy going to some of the silly dinner shows. One of the ones I booked asked if Malachi would like a cow bell to ring during the show, which is an emphatic YES! More cow bell!

Our appointments are all in limbo this week as wait and see if these germs will go away. The boys each have physical therapies, feeding therapies, GI appointments, horse therapy, and Levi’s overnight sleep study.

I read two quotes this week that really struck a nerve with me and I have been reading them over and over again and processing the words.

“Some people could be given an entire field of roses and only see the thorns. Others could be given a single weed and only see the wildflower in it. Perception is a key component to gratitude. And gratitude is a key component to joy.” -Amy Weatherly

I have been thinking about the last sentence in that one about gratitude being the key component to joy. And the importance of gratitude in our lives is overwhelming.

The moment we start to think that we “deserve” things or that we are entitled to things we start to lose the joy that the simple feeling of gratitude can produce. Life throws us unexpected outcomes and disappointments, but when we get to the point where we can no longer find things to be grateful for then we are in a dark place.

I think the same thing is true about our walk with God. We must always remember the power of the grace He freely gives. And having a heart of humility and gratitude are so incredibly important.

The second quote hit me on a more personal level.

“I sat with my anger long enough, until she told me her real name was grief.”

Anger is something that I have struggled with over the last six years. I can grow so frustrated over such tiny things…especially the ones that are out of my control. It is almost embarrassing to think about the tiny things that make me mad.

As I read this quote I found myself nodding in agreement, acknowledging that grief drives so many of my ridiculously angry moments. This just isn’t how life was meant to be when I pictured it. I grieve every day over the dreams I had for my kids. And I grieve every hour over their suffering, wishing I could take it all away.

This morning in children’s church I showed the kids a sealed envelope and told them that even before they were born God wrote out a special plan just for their lives. I explained how God doesn’t show us what is on that plan until the time is just right.

I told them that when God wrote my plan he had on there that I would have a special son named Malachi in a bright green wheelchair and a little baby named Levi. Nothing is a surprise to God.

I also explained that there is a whole lot more on that plan that God hasn’t let me see yet, but faith means that I trust that God’s plan is way better than anything I could ever imagine. I just have to be patient and trust that God will reveal more and more of that plan to me when the time is right.

The kids processed my words and then one of the 5 year old boys said “But what if I want to see my envelope? I want to see it now not wait until later.” And my heart totally related to his in that moment.

Don’t we all want to see what is in the sealed envelope. We all would love a glimpse of what God has in store for us in the future. But if we got to peek at the envelope it would completely deplete the need for us to trust in an omnipotent God whose ways are higher than our own.

So I am working on trying to re-direct that grief from anger to faith in the unseen plan God has for my family.

Please pray for us this week, especially Monday evening for the sleep study. The last one was a challenge for sweet Levi and I can’t imagine this round will be any different. And pray for my emotional health as I can already feel the gates getting ready to burst. Inflicting pain and discomfort on my children is so challenging to process.

Much love,

Leah