Rivers & Lakes

Summer is almost here! When you are married to a teacher you get pretty excited about that last week of school, knowing you are about to get 24/7 help with the kids at home and at appointments. And maybe keeping an unnamed child out of the pantry and away from the powdered sugar bag. It was pretty easy to narrow down our list of suspects by a) following the trail and b) eliminating anyone from our list that can’t walk.

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Summer also means medical traveling season begins for our crew. We try to time all of our out of town medical visits for June, July, and December so Jake is able to come with me. We will travel to Nashville for appointments at the beginning of June. We also heard back from Cincinnati and we will have four days of appointments followed by a procedure at the end of July. They are eager to take a look at Levi’s vocal cords and assess the level of movement.

With the summer comes the hot temperatures! Malachi is very sensitive to heat and the part of his brain that manages temperature regulation is very damaged. Saturday was in the high 80s, which isn’t that bad but his body had adjusted to the cooler temperatures we have been having and just panicked. We got him home from his indoor soccer game and he was running a fever of 102. There is a noticeable difference between Malachi’s sick fevers and Malachi’s brain fevers and we knew this one wasn’t sickness related. We were able to bring it down over the course of 4 hours, but when we do this he usually continues to drop and becomes hypothermic so we have to watch him closely.

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Great news- the bear has not been back in over 5 nights! Usually that means he has moved on, so we have been thrilled. He didn’t even stop by for salmon night, which is his favorite night to swing by unannounced. We even got brave enough to go on a few walks this week!

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Levi has been getting more ambitious with eating and drinking, and it has been so fun to watch him discover new tastes. It is a very slow process as we are combating some serious oral sensitivity but he is making such big gains. I take a picture of each new food he eats to remind me when the feeding therapist asks each week.

For the first time ever he successfully got some water out of his sippy cup!

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He has also started telling me “no” with his head shake, which cracks us up. Here is a video:

We had so many appointments this week that Malachi was only able to go to school for a bit on Friday. He started to get emotional a few times while he was there but did much better than last week.

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He did get to go to a career fair at church on Wednesday evening and see a fire truck and a police car!

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Levi is still absolutely obsessed with big brother Malachi.The feelings are mutual.

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Any chance he gets he will scramble up onto Malachi’s lap and sit with him. This week he has been giving him lots of big, wet kisses. I filmed some for you to see:

Levi had his post-op visit with his eye doctor this week. I have decided that these are my least favorite appointments in our cycle right now. We drive nearly an hour there, they dilate his eyes, and sit in a crammed waiting area while the eyes dilate. They tell you it takes about 30 minutes. But inevitably we get stuck in that waiting room for over an hour. Then they take us to an exam room for our appointment which is literally two minutes long. Two minutes. This week’s appointment was just shy of 2 hours, and only two minutes of that was actual doctor time.

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I was doing my best to keep Levi entertained and Malachi content and fed, but my stress level was at its max. I was on the verge of tears by the time we actually went back to the exam room and on the way out of the building I lost it and began sobbing.

I couldn’t even pinpoint why I was so emotional…I think to summarize it best I just felt so “unseen”. We were just another name on a sheet of paper. No one cared that we had sat in a crammed waiting area for over an hour. No one cared that I had two complex kids to deal with during that time. No one cared that I had to use the restroom but had no way to get both of the kids and myself out of the office area and across the hall into the tiny public restroom. They all saw what I was dealing with, but no one cared.

They don’t have to care but I just wish we were in a world where their instincts were to care about their patients. Not just cycle them through their assembly line. Hopefully you know me well enough now to know that I do not expect special treatment in our world….I want this same caring treatment for ALL children, not just my own. If you are in the healthcare industry and reading this, please remember to treat your patients as more than just a number. Make sure your environment is not void of compassion. Look for the signs of a weary mother and offer a word or act of kindness. Look for a child struggling to stay calm in a place that prods and pokes and offer a smile. Don’t just look but see. 

Church has been challenging lately. Levi is too wild to stay in service and too clingy to go to the church nursery. I have been so discouraged as we get all geared up and I am stuck sitting on a bench in the lobby with a bored Levi. I can’t stand when people complain about things but don’t put any effort into actually fixing a broken process, so I spent the weekend setting up an area for for us to comfortably sit at during the service. Some men in the church even rigged up a speaker so we could hear the sermon in the lobby where we sit! As you can see in this picture, I can’t even walk three steps away from Levi before he loses his mind haha.

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We were also joined by some friends in the same boat.

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Random thoughts time…

On Friday afternoon I walked up to the side door at Malachi’s school to pick him up. Over the last few weeks a momma bird has been diligently preparing a nest and recently laid eggs. Each time I approach that door to the school she flies away, just missing my head so I have been cautious about not surprising her.

When I walked up to the door on Friday she didn’t budge. I looked up at her, giving her plenty of time to react and fly away, but she just looked right back at me. Her eyes were wide, her beak was open, and I could see stress in her face. This sounds so ridiculous, but I saw so much of myself in that momma bird in that moment.

I rang the doorbell to let them know I was there and then took several steps back to give her a break from her anxiety, but her faced never changed. As I stepped back I noticed that there was another bird on the nest as well (I am assuming daddy bird) and he was facing the opposite direction, both as still as could be.

As I looked again into the eyes of the momma bird I could tell that she wasn’t even recognizing my presence as a threat. There was something else going on. I took another step back and spotted it- I could see the distinct pattern of a snake a few inches from the bird’s nest.

My heart started to break for those birds, and my connection with them deepened to a whole new level.

They did everything right. They went and found the perfect pieces to build a beautiful nest. They prepared a spot high in the air to keep their little ones safe. They diligently flew back and forth to that nest each day, making sure that the environment they were preparing would be cozy for their babies.

They welcomed their beautiful eggs into the nest last week, doing everything parents should do to protect, nurture, and love their babies until they were born. And even though they did everything right, danger and possible death still lurked nearby.

Their eyes should have shone with joy and happiness. But instead they dared to not move a muscle. eyes glossed over in fear. They were willing to sacrifice their own bodies by staying on that nest to protect their babies from a known death. They were willing to make this sacrifice for children whom they had not even met yet. Because that is how deep love runs.

Jake and I have been sitting on the nest for 6 years. Our eggs have hatched, but unlike other kids, ours must stay in the nest. We have had moments where we don’t move a muscle, for fear if we let down our guard for even a second bad things will happen. There have been moments where the danger isn’t present and we relax those tense muscles long enough to breathe, but we dare not fly from that nest.

As you can imagine (with my soft heart), I can’t get those birds out of my mind. I see that panicked momma bird’s face when I close my eyes. I told the SRO officer about the snake but it had tucked itself into an unreachable spot by the time he got there to look and he said there was nothing that could be done. All weekend long I have been rooting for the birds, but googling has told me that I will likely find an empty nest tomorrow when we go to school.

The things I read on Google reassured me that this is all part of the circle of life. That snakes must eat too. And for some reason that sparked me into another rabbit trail that I can’t get out of my head…

My children were not meant to live. In another century, or even in another country today, both of my children wouldn’t have survived the day of their birth. I can’t imagine having to hold a newborn like Levi, struggling to breathe until he passed away. I can’t imagine not having access to a c-section and giving birth to a stillborn 1 pound 12 ounce Malachi.

I can’t imagine a world that doesn’t include my two sweet, uniquely “broken” children.

And I am so thankful that God has seen fit to let them leave their footprints on this earth.

It isn’t the life we imagined. I have that momma bird look on my face often, eyes frozen in resolute steadfastness to protect my babies. But I am thankful that God continues to remove the dangers that swirl around my children and threaten to take their lives.

Tonight I am thankful that even when others don’t see our struggle, God sees.

God always sees.

Isaiah 43:2a says “When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you.”

As I read this verse I couldn’t help but wonder why the writer said something so redundant. But the more I processed the words the more I recognized his purpose.

In life we will have lake moments and river moments. They each come with their own unique set of emotions.

In a lake moment, you are treading water and exhausted. The water rests on your neck, and the weight of that sensation is mentally difficult to fight. Your body begins to do things you didn’t know it would as panic sets in. The only thing you can seem to focus on is the water sitting just below your mouth.

In a river moment you have a destination in mind- the other side of the river. But between you and that destination is a path of slippery, uneven rocks that you can’t see. Each step you take you are trusting that your foot will land on something solid, which it doesn’t always find. Your body is tense with stress and mentally you are bankrupt as all of your energy is focused on simply taking that next unsteady step.

Both of these moments deplete you, but each in their own different way. I am sure at some moment if your life you can relate to a river moment, a lake moment, or like me you can relate to both on multiple occasions.

But back to that verse in Isaiah…in those river and lake moments God promises that He will be with us. He reassures us that the waters will never sweep over us. It is in those threatening moments in our lives that we realize how to call out to God and how to reach out in desperation, knowing that He will grab our hand and hang on until we find our footing or find the shoreline. He doesn’t always rescue us from the waters and carry us to dry land, but His hand is always extended and ready to help guide us step by step.

When was the last time you reached out for that hand, or even noticed it braced above you, ready and willing to help?

Thank you for praying for our buddy Jonathan last week. He is home right now but still healing slowly and could use continued prayers.

Please remember our boys as well, that God continues to work in a mighty healing way.

Much love,

Leah

 

 

 

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