The theme of this week has been sleep deprivation, which often leads to emotional roller coaster rides for mommy.
As we tackled appointments I tried to prep my heart for Levi’s trip to the eye doctor. I resoluted to not get emotional or angry, and to definitely not cry in the parking lot.
In the past these appointments have needlessly taken several hours. To avoid me trying to corral the boys in a tiny waiting room I now snag the first appointment at 8am. This means I have to be up by 5:00 to get everyone dressed, medicated, fed, and on the road but if it means we don’t have to sit in a waiting room for hours I will begrudgingly do it.
We got there early, dilated his eyes, and then we waited…and waited…and waited. The waiting part exhausts my emotions as we are in a small room with at least thirty other people, mostly kids and it seemed like all of them were coughing up nasty junk very close to my immunocompromised boys. We spent 1 hour and 45 minutes in the waiting area before we were called back to see the doctor.
He looked into Levi’s eyes and said “Hmm that’s unusual. That’s very abnormal.” And I could feel the emotional floodgate starting to waver. When a brain is deprived of oxygen the body starts to kill off other body systems to try to preserve the brain, particularly attacking muscles and nerves. It seems that Levi’s brain damage attacked his optic nerve as well, permanently destroying it.
The doctor explained that it is very likely that Levi will be blind in his left eye (if he isn’t already). The right optic nerve looks okay for now. There is nothing that we can do to fix the problem or reverse the damage.
As we left the appointment I sat in the parking lot and processed. I couldn’t spend too much time in my emotions as I had to head to our next appointment across town. I don’t know if you have ever had a traumatic situation in your life- a moment that you never want to remember as it brings a flood of painful emotions. I keep trying to push the reality of Levi’s brain damage away from my thoughts, but each time we find more “domino effect” issues I have to face that reality all over again.
I spend every week taking my boys to appointments and therapies, trying to find ways to help them cope with their brokenness. We try surgery after surgery to improve their lives. We cram our weeks full of therapies to help them learn coping mechanisms and function in spite of their brokenness.
Every single day I have to face the hard realities I try so desperately to avoid. It is a physically, mentally, and emotionally exhausting world. This week I have felt the weight of this life and allowed myself to mourn a bit.
But staying in that dark place isn’t good for my family so I have had to wipe off my feet from the eye doctor appointment and move forward. There is nothing we can do to change or affect the outcome so dwelling on it doesn’t make a whole lot of sense!
This week we have spent a lot of time snuggling, reading books, and desperately attempting “normal”. Malachi is currently obsessed with the book “The Wonky Donkey” and is in a movie watching mode. His favorites this week has been the Minions movie and the Lion King.
Levi is, well, Levi. This week he came to me in the kitchen with something in his hand to give me. I held my hand out to receive his gift, and he dropped a fistful of toilet water into my hand. I followed the wet trail to the bathroom to find that he had decided to “clean” the toilet with the toilet brush then apparently played with the water.
Malachi attempted school this week but they called me about an hour later and said he was crying. They asked him if he wanted mommy to come pick him up from school and he signed YES YES YES. I picked him up and he was completely back to normal when we got home. I think he just wanted to be with me for the day!
And for the record, those are Jake’s feet not mine haha!
We have been working on several things around the house to improve Malachi’s quality of life and we made some big steps this week! On Friday we received the checks from the grant company and officially ordered the heated swim spa for the boys. It takes 3-4 weeks to arrive so in the meantime we will be prepping the area and laying a concrete pad. Thankfully some friends from church have offered to help with this step.
We have a back deck area that is in the direct sunlight for most of the day, meaning Malachi couldn’t comfortably be out there. His eyes are so sensitive to light and he shuts down when the sun is on his face. This week we had a crew come and put a roof on it so we could take him out there for family time. We have a large bed swing to hang when it is completely finished.
We took him out there today for the first time and he was SO excited! We have been calling it “Malachi’s treehouse” and the suspense has been so cute to watch on his face as he has listened to the construction process.
Levi also approves.
I don’t know if it is the emotions of the week escalating my thoughts, but I am more determined than ever before to give Malachi the best life I can while he is here on earth. With the severity of his disabilities there is a host of things that could take him from this world in an instant. I never want to regret not doing enough to make him happy and comfortable. I want this life to be filled with joy for him.
Friday night was our youth groups annual lock-in at the trampoline park. The teens look forward to this event and always bring lots of friends, so we never really know exactly how many to prepare for. In between appointments I gathered the necessary supplies to survive the night: 30 pizzas, 320 waters, 240 canned sodas, 150 bags of chips, and a gross amount of Little Debbie snack cakes. Wal-mart pick up for the win!
The kids haven’t been sleeping well at all this week, and I have only been getting about 4 hours of broken sleep each night. Leading up to the all nighter that the lock in would require I prayed for strength to make it through.
Jake stayed home with the boys and I took the teens. I warned Jake that nights have been rough and he definitely got a taste of the madness of nighttime Malachi and Levi. When you get one to sleep the other wakes up and the vicious cycle repeats itself all night long.
Meanwhile at the lock in we ended up with over 80 teenagers and had a really fun time. God gave me the strength I asked him for to stay up all night and drive the bus safely home the next morning. I did a Bible study with the group about the importance of being the type of friend that leads someone closer to Christ rather than away. I used the story from the Bible about the four friends that carried the paralytic to Jesus, lowering him through a roof to get him in front of Christ for healing.
After the Bible study I had the kids take turns carrying their friends in bedsheets and re-enacting the story, using the trampolines to safely catch the ones that failed. Most of them ended up accidentally throwing or dropping their friends but it is always fun to get the Bible to come to life a bit for them. And it was highly entertaining for me to watch at 2am.
We are still playing catch up with our sleep, taking naps today in between prepping dishes for our Sunday night Bible study. Jake has the day off tomorrow and I only have two appointments with the boys so we will hopefully be able to nap in shifts. We are able to divide and conquer a bit when Jake doesn’t work in the mornings, each taking on a child for the night.
As we enter into a new week I can’t help but desperately hope that it brings better news than this past one did. We try very hard to stay positive and focus on the good reports, but lately there haven’t been many of those for either boy. I am praying for a week full of reminders that God holds us in the palm of His hand.
Matthew 11:28-30 “Come to me, all you who are weary and heavy burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”
It seems a little confusing to me to think about Jesus’ burden being light so I have really tried to process this verse and decide what it means and how it applies to me.
The yoke is a wooden device that goes around the neck of oxen as they plow the fields. When we choose to put our necks in Christ’s yoke we are choosing to live a life of submission to wherever He may lead us. We are trusting that the job He has for us to carry out is a purpose driven one. And when we are walking in the will of the Father, the yoke is easy and the burden is light….because we are removing ourselves and all of our sticky human emotions from the situation.
I think it is safe to say that this week has pushed me into the “weary and heavy burdened” category so this week I will be asking Christ again for his yoke. I will be asking for Him to take the worrying and the overthinking away from me and replace it with a trust in His will and direction for my life.
I am praying for rest for my soul.
Please pray for miracles for my boys. Pray that Levi’s optic nerve isn’t damaged severely enough to cause blindness. Pray for health for both boys as we navigate lots of waiting rooms. And pray for sleep. Lots and lots of sleep for all four of us!