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.
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…
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.
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.
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…
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.
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.
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…
- 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.
- I catch spiders and free them outside in an effort to spare their lives and feelings.
- 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.
One more photo for emphasis so you don’t judge me…
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.