I remember when I was in Jr. High, the school nurse lined up everyone and told us to bend over so she could run her hand over our spine. I honestly didn’t know what this was all about, until years later to find out they were checking us for scoliosis. A common procedure still done today at schools.
Jeremy has congenial scoliosis, which means at birth. Jeremy was born with mild scoliosis, a bone-growth study, skeletal survey all revealed that. We first started to notice progression shortly before he turned 2 years old and Jeremy was re-checked when he was almost 3 and progression was to a point we needed to do some intervention. Jeremy had low muscle tone, he was just starting to crawl when he was 2, starting to stand for short periods of time. I researched all I could on scoliosis, but when Dr. Cyrus told me that day I was numb, lost for words. We became familiar with the TSLO brace, aka scoliosis brace. I remember when Jeremy started to wear the brace, we went out to eat and the guy who checked us out in a very loud, concerned, expressive voice, said, “what is wrong with that baby’s back”. I calmed myself because I really wanted to come across the counter and say, you know dude it’s none of your business so breathe. In a calm voice I said, “he only has scoliosis, it’s a curvature of the spine and he's fine".
Jeremy started to stand upright when he was 3 and at the age of 5 started walking, which slowed down the progression. The reality is, being born with scoliosis, the progression that already had taken place his spine was going to grow that way. The growth spurt he hit last year it progressed rapidly and rotated inward. It was also reality that some sort of surgical intervention was going to be required for Jeremy's spine.
I would be lying if I said, “ I’m fine with being admitted to the University of Missouri Children’s Hospital”. I know they are more than equipped to deal with Jeremy and Dr. Dan is the surgeon we need to follow, for that decision I am absolutely 200% sure of and have great peace. I am scared and have been having high anxiety moments that I normally do not. I’m scared for my son, I’m scared that his spine is not going to tolerate halo traction or produce the results needed. I don’t want to set down with Dr. Dan at anytime during our stay and have a heart-to-heart talk about a complex, risky procedure and I don’t want to hear the words from Dr. Dan that Jeremy is not responding as he hoped. I have “up” and then “down” times and I work hard to not give into them down moments and turn it over to GOD, ask for peace about the entire situation. I truly get the point that no matter how much control I believe I have, it boils down to Lora: 0%, GOD: 100% control. My GOD, my creator, Jeremy's GOD, Jeremy's creator. He knows best and all.
I think back to that statement I made to a cashier 8 years ago, It’s only scoliosis, a curvature of the spine and he’s fine. The word scoliosis has sure placed a great deal of grief, frustration, stress into our lives. I have visited many families this past year who their children, “just have scoliosis and they are fine”, they make it until they are teenagers before surgery is required and some never require surgery. For, Jeremy, he doesn’t just have scoliosis, he comes with complex issues that don’t always produce the results that I would personally prefer. You can’t get a medical book or search on-line and find a chapter, “Jeremy Ray Roberts” because Jeremy continues to write his own book, word by word, sentence by sentence, chapter by chapter.
No comments:
Post a Comment