Our little Levi is officially “a whole hand” as he says it. I told him that he could choose his birthday dinner and after lots of deliberation he said “I want a steak in a restaurant that I don’t have to share with anyone else!”
They not only brought him out his own tiny sirloin steak but also a dessert for all of us to share. And Malachi loved it too.
His other request for his birthday was to eat a turkey sandwich in dad and mom’s bed. His little grin as he lounged back against the pillows and took that first big bite was precious.
The fact that both of Levi’s birthday requests involved food reminds me of the many blessings and miracles we have been given in his life. So many kids with paralyzed vocal cords can’t eat, drink, speak, or breathe on their own. And our little warrior is verbally asking to eat a steak on his birthday…the exact birthday that is the marker for this difficult diagnosis to be considered permanent. That is a God moment for sure.
I love the simplicity of children and how even the smallest things are such a big deal. Levi had a wonderful birthday with fun surprises from friends, a new scooter from grandma and a birthday card from Grammy.
The boys both had a trip to the dentist this week, which is always an adventure. Levi’s medical PTSD flares like a bonfire and Malachi has never liked things touching his mouth so they keep everyone hopping. Did you know that seizure medications can cause some pretty intense issues with teeth? Malachi takes 3 anti-convulsant medications (so 6 doses a day) for his epilepsy and Levi takes two larger doses a day for his. Watching their teeth and addressing the issues, especially with Malachi being non-verbal, is a top priority.
You likely already know this, but Malachi had to have 15 of his 16 teeth surgically removed as a baby due to lack of enamel. He has had capped teeth for years and those are now getting pushed out of the way by incoming adult teeth. What wonderful growth and progress for us to see his real teeth again!
The boys also had their weekly therapy at the horse barn.
And lots of time at home to read books, catch up on laundry, paint, and play.
Tomorrow we head to the hospital for some appointments and then we are looking forward to a delightfully boring week with Jake off from work. We have started trying to decide what our family service project with be this year; I am feeling led to do something for a NICU family again but I am still praying for God’s leading. In order to fund our project each year we go around the house and “shop” for things we don’t need anymore that we can sell and donate the money towards our project. It is always a fun activity that the boys both seem to get into and helps keep them focused on looking to give to others the way that Christ did. So this week is purge week as we hunt for things around the house.
We are also working hard to fill all the nativity orders for the youth group. Check out the batch we finished this evening!
We still have a few more dozen to knock out, so we will be having some more work days here at the house to let the teens finish those. I am so proud of their hard work.
So another birthday in the Carroll house means another walk down memory lane, leading to some really hard moments for me. As I have said before, the day that they were each born was one of the best and yet most traumatic days of my life. Levi was born 6 weeks early, weighing just 4 pounds 8 ounces. The 7.5 months leading up to his birth I was followed very closely by doctors and continually told that while small, he was healthy and progressing well. We were at the doctor every Monday, Wednesday, and Friday for tests and monitoring as well as shots every morning and evening. And eventually I had another placental abruption that required another c-section under general anesthesia. Jake and I both had to miss the birth of both of our children.
We were given the opportunity to interact with Levi in his incubator for just 6 minutes before he was whisked away in an ambulance to a higher level NICU. And the pendulum flew from happy new mom to grieving mom. Levi spent his first three nights alone with his nurses before I was released and finally able to get to him.
If I am being perfectly honest with you, the mom guilt surrounding Levi’s birth is so incredibly thick. I recognize that there really weren’t many things that I could do differently but there are a few of them that my brain can’t release the guilt of. And birthdays trigger those in a profound way.
It took the specialists 14 days to figure out what Levi’s true diagnosis was. In the meantime he was treated like a preemie in the NICU, none of us fully understanding the magnitude of his true condition. He was on a ventilator and off a ventilator, on oxygen then trialed off oxygen, on CPAP and off CPAP. Round and round we went trying to monitor progress that in the end his diagnosis would have never allowed.
This video is a perfect example of the mom guilt I carry. Levi had been on CPAP for most of the day and they decided to trial him off of his oxygen. As I look at this video now I can see so many red flags of a child struggling. Yet there I am, completely aloof and singing to him as I tried to pretend like my baby was going to be just fine. I knew better. I knew his color was off, I knew those retractions were out of this world, and I didn’t intervene.
When I look back at this video the questions my mind wanders to the thought, “Is THIS the moment that he was under supported and his brain started to die off? Is THIS the moment that the oxygen deprivation attacked his optic nerve and this is the moment that is causing him to lose his vision in his eye? Is THIS the moment that caused his cerebral palsy? His epilepsy?”
I simply sat next to my son and sang Jesus Loves You, caught in a world of denial and longing for that eye contact from my newborn to assure me that he was going to be okay. But I remember deep within my soul I felt panicky, knowing that something was very wrong.
Did I do enough for my son? Did I advocate hard enough? Was I present enough physically, mentally, and emotionally?
The mom guilt is suffocatingly thick each time another birthday comes as I run through the what ifs.
I have been all over the Bible this week, spending time in Romans again.
“The mind governed by the flesh is death, but the mind governed by the Spirit is life and peace.” Romans 8:6
And reading this verse made me really contemplate who the governor of my mind is. The pretty answer is “God”, but is that an accurate answer in my life?
Our mind will be influenced by our flesh, but at what point does it cross over into us being governed by it? I would say that this week I allowed myself to drift away from the Lordship of Christ and lean in towards my flesh as I reflected on Levi’s brith. I allowed myself to be governed by it, concluding that there is something I could have done that would change the story that He is writing now.
God is the author of Levi’s story, and not a thing will happen (or has happened) to that child that is outside of the will of God.
A mind governed by the Spirit is life and peace.
My prayer this week is not only that I can keep my mind focused on the Spirit and its work in our life, but that I can do a better job spotting the subtle shifts that it tries to take towards the flesh.