Have you ever been in a situation and the perfect song comes to mind that suits the moment perfectly? Over the last few weeks we have had a lot of these pop into our heads. For example, when we are at the house and someone comes over I can’t help but hum “Welcome To The Jungle”. Or when we go out in public with both boys and all their gear in our heads we hear “They came in like a wrecking ball…”
While we are slowly mastering the art of managing both boys and their extensive needs in public, it is definitely still a challenge. But we are the Carrolls and apparently love a good challenge, as life has worked hard to show us, so we are trying to not let it interrupt our lives. Jake’s last day of school was this week and to celebrate we went to the local Mexican restaurant.
Let me side note here and tell you that these last two weeks I have reached a level of exhaustion that I have never known existed. For the last five years I have had to function on very little sleep, but adding in the mental work required to take care of both of these boys is wearing me out.
On this particular day I was feeling that exhaustion and actually contemplated sleeping in the car for the 6 minute drive to the restaurant. We tromped in, turning heads as we always do, and settled into a booth. I was secretly doing a happy dance inside as Jake sat down next to Levi- he is the more high maintenance one these days.
Before we even ordered Malachi set off into a 3 minute seizure which results in him filling his diaper. When these seizures hit we do our best to preserve his dignity as much as possible and hide the fact that he is seizing. We cover his eyes and try to keep him from clawing his face in the process. We got him through that one and shortly after we ordered he went straight into another 2 minute one. Jake and I contemplated leaving, but had already ordered food so we stayed. Malachi LOVES going out and we didn’t want him to feel like he was being punished for his brain’s choices.
Then it was Levi’s turn. Little Levi started screaming uncontrollably. We tried rocking him in his car seat, distracting with toys, and nothing was working. We were feeling the burning eyes of the other customers so Jake decided to get him out of the car seat and try holding him. While he calmed down a bit he was still pretty fussy so Jake bounced him in his hands until our food arrived.
As Jake was putting him back into the car seat I spotted it…Levi had apparently filled his diaper and all that “bouncing” had “relocated” it alllllll over Jake. Jake didn’t know this yet and grabbed his silverware like nothing had happened. We still had eyes on us since our child was losing his mind, so I mouthed to Jake to look at his shirt. He said “hand me the diaper bag so I can get the wipes” and as I went to grab it I realized that it had been left at home.
Yup. Here we were, trying our hardest to enjoy a normal night out and pretend to be a typical family. And in the course of 15 minutes, 3 out of the 4 of us smelled like poop. One boy was still screaming uncontrollably, the other was laughing at his maniac brother. And Jake was still just covered with poop. And then there was me- waving the white flag and asking for our check. We surrender! So we snuck out the door as sneakily as a poop covered dad, five year old in a wheelchair, screaming baby covered in poo with oxygen and a feeding pump, and a mom who hadn’t showered or slept for three days could possibly sneak.
These are the moments we have to choose to laugh at. I told Jake we were going to try a re-do dinner another night, and I am happy to report that the other attempt went wonderfully.
Speaking of chaos, our bear friend has been back four of the last six nights. We have officially named him Rumpke, as he loves to take our trash bags back to his den. We found his path and it goes right under my bedroom window so I opened the blinds, ready to catch him in the act. I laid down and within 30 minutes I heard a boom. I jumped up and ran to the window and there he was about 8 feet from me. We had walls and windows between us but seeing him that close and that huge made my blood run cold. I watched him open the trashcan and choose a bag and head back towards the tree line.
Jake sleeps in the guest bedroom (more on that later) so I ran over and woke him up and we took a spotlight out onto the back porch to see if we could spot him. By that time he was already out of sight but we could hear him thoroughly enjoying our trash. When the light got near him he scrambled up a tree and we couldn’t see him.
His front paws are a little smaller than my hand. But his back paws are much larger!
I told Jake to go upright the trash cans so I could hear him if he came back and after some major convincing he darted out and flipped them back up for me. At that point I was officially wide awake and knew he would be back so I sat by the window and waited. Malachi ended up waking up so I went and got him out of bed and we sat and waited together with Levi sleeping soundly behind us. Sure enough here comes Rumpke the bear, wandering up to the house. He got about 10 feet from the window so I thought I would try to scare him off and hit the window hard and loud with my fist. Instead of scurrying off he just turned and stared right at me.
Talk about FREAKY. So there I sat, staring face to face with the bear. I hit the window again and he took one step back but still wasn’t convinced to run. In a last ditch effort I hit the window hard several times in a row and he ran about 10 steps away and laid down flat. I think he thought he was hidden but he is dark as night so I could still see right where he was at.
At this point Malachi was crying, as he didn’t understand why I was beating the window and he totally feeds off of my emotions. I am confidence he sensed I was nervous. I ran across the hall and got Jake back up and we ran out on the back deck (don’t stress- it is 12 feet in the air and has no stairs- yes, we know bears can climb but I knew right where this one was “hiding”) and we shined the light right on him. He panicked and headed for the tree line and crouched down in three feet of grass. We could still see him clearly and kept the light on him, not quite sure what to do next. Then he stood up on his hind legs and stared at us. We stared back at him, neither of us quite knowing what to do next. He is about the height of Jake and seeing an animal that size is just crazy. After our 30 second stare off he ran into the woods and disappeared.
Our next plan is to set off the car alarm when he gets next to it, but I haven’t been able to catch him in the act since that night. Plan B will be a bird shot in the shotgun (in the air, not at him) and if that doesn’t work we will have to go to Plan C and have the local wildlife professionals trap him and release him in the mountains.
Malachi had his last day of school and his sweet teachers cried as I drove away. We were truly blessed to have such caring people for his first year at school. They gladly accepted the challenge of learning Malachi and I confidently believe that they love my son. They asked about meeting up with him this summer and possibly babysitting for us. Jake and I are coming up on our 10 year anniversary next week and we may just attempt a seizure free/poop free/screaming free dinner out. Maybe.
I have been trying to help Malachi understand the concept of summertime and how school is out for a few months. I am hoping having Jake home will help take his mind off of things.
Levi’s personality is changing daily it seems. He is hilarious. His stridor is still there but it is quieter than before. When he is awake he is holding strong with his oxygen saturation but when he is asleep he definitely still needs the support. He has torn his cannula off several nights this week and I can tell by his dip in his oxygen sats. He only dips down to 90-93 but that is still too low for my comfort.
He seriously never stops moving. I never knew babies could be so active! In this video Levi shows you how insanely flexible he is. He loves to put his feet in his mouth:
This week we held the soccer banquet for the high school boys. I sat with the kids while Jake presented awards and every time the audience would clap Levi would get scared and start crying. Malachi on the other hand would laugh hysterically. Every thirty seconds they would clap for another player that was recognized and the cycle would continue all over again. By the end he seemed to understand the concept a bit more but the learning process was definitely a journey haha.
Malachi is continuing to have some pretty nasty seizures throughout the day, but otherwise has had a pretty great week. Last night he slept in his bed for 7 hours straight! That is HUGE! We had friends from high school stay with us this weekend and the activity in the house must have just plum worn him out. We took them to the river where Malachi got to dip his toes into the very cold water. He also got to go to the playground and swing with daddy.
Today is a pretty special day as it marks the anniversary of the day we brought Malachi home from the hospital after 112 days! What a whirlwind of emotions that day proved to be.
I can’t believe how much he has changed over the last two years! Look at these pictures from two years ago:
And then here are some from this week:
And yes, he got to ride the horse while on his belly this week! And he absolutely loved it. And yes, he is still wearing those same clothes from two years ago haha.
Now that Jake is finished with school for the summer we are officially both back in the same bedroom at night! Being a special needs parent statistically increases the divorce rate (some sources say it is as high as 80%). Jake and I are very aware of this statistic and we are trying to guard our marriage from any unwanted attacks.
To be honest, I can absolutely see how having a child like Malachi can devastate a marriage. Our life is physically, emotionally, financially, and mentally exhausting. We are both the heaviest we have ever been, the most exhausted we have ever been, the most depleted we have ever been and we have no time or energy to remedy these things. But we know that the devil can sniff out weakness easily and uses it to step into our lives so we are guarded.
But even having him back in the bed seems like a huge victory. Yes, he still snores and yes, he somehow managed to steal a king sized comforter from me that first night but it is worth it! Friday night was the first night in the same bed since the night before Levi was born in November…process that…so crazy!
These last few weeks have been challenging for our county. The education system suffered some major cuts and the county had to eliminate 17 teachers in 5 schools. As the days went by we heard more details about where the cuts would happen and 3 of them were going to be from Jake’s school. Then we got word that 1 of those cuts would likely be a math teacher.
As we waited for the cuts to happen Jake and I talked about the possibility of him losing his job- and more importantly for our family, his insurance. Our initial reaction was panic and fear. We have watched our plans unravel over the last few years, but have always had a stable income and insurance source.
But then we started to really process the things that God has carried us through over the last five years. And when we remembered that His beautiful hand of protection is on our family, we were both covered in peace.
Last week I talked about a verse in Philippians 4 that has become a focal point for our family. This week I want to back up a few verses from that one and point you toward Philippians 4:4-7:
Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God,which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
The peace of God is such a special thing. It truly doesn’t make any sense. There are situations and circumstances in our lives that we could spend every waking minute focusing on. If your mind is anything like mind, it always settles on the “worst case scenario” making me a bundle of nerves.
But like this verse says, it is the peace of God that guards our hearts and minds. It overwhelms you when it hits you in a wonderful way.
So this week we are thankful for God and his beautiful gift of peace.
Jake was not let go this week. But if he had been, I am confident that God would have already mapped out a different path for us and gladly guided us down it. A relationship with God is such a comforting thing and I am so thankful for His hand in our lives.
May God overwhelm you with His peace this week in whatever unknown you may be facing.