Transverse Myelitis

My brother called me and we talked about the doctor's theory that Jameson suffers from Transverse Myelitis. He went through something similar with his own daughter - my niece, Julia. He knows the terror of being faced with the possibility of losing a child. He gave me some good advice, and it's advice I've taken. He was disappointed that the doctor turned me to the internet to learn more of Jameson's condition. His advice to me was to stay off the internet. Most informational websites offer worst case scenarios, and textbook rhetoric. My son's diagnosis was assumed, simply because there was no test that conclusively confirmed it. More serious things were ruled out, but the strong possibility of TM remained.

The next few days are a blur. I spent the majority of the weekend numb, unable or unwilling to accept that not only could my son be paralyzed the rest of his life, but that I could lose him. I didn't know much about this illness and what I did know, terrified me. Nothing made sense to me. Going on with day to day obligations was difficult. I forgot how to do laundry. I stared at the sink full of dirty dishes, perplexed by them. Sunday, I realized I hadn't eaten since Thursday night.

Sleep eluded me. As I lay awake, I fought the visions that entered my imagination. When I closed my eyes, I saw my once active, athletic son crumbling to the floor as he tried to stand. I envisioned him in a wheelchair. I imagined having to make the call that, despite the doctors' best efforts... we'd lost him. It was far less frightening to just stay awake, than it was to try to sleep and see all the "what ifs" life had in store for my beautiful boy.

My heart raced and I was short of breath, as I sat waiting for the phone to ring. I remained glued to my computer, awaiting updates from my brother or ex-husband. When the phone did ring, I nearly died of  heart failure, fearing that this was "the call".

At the peak of this illness, Jameson had no feeling or movement in either of his legs. He was unable to urinate or have bowel movements, and couldn't sense when he needed to go. During his first MRI, the technician noticed that his bladder was full. He was asked, "Do you need to go to the bathroom?" Jameson answered no and mentioned that he hadn't gone since the night before - more than 24 hours prior. It was then that he was catheterized. The release of urine alleviated the stomach pain Jameson had been having. He was able to go, but still wasn't sensing when he was going.

The paralysis traveled up Jameson's spine, preventing him from sitting up on his own without slumping from side to side. His thoracic cavity was weakened, preventing him from coughing. Eating became a hazard for him. If he were to choke, he wouldn't be able to cough or gag to expel the food.

I continued to prepare myself for the worst. I cried easily and often. I said prayers and requested prayers from others. I'd never been a big "believer", but this was my son, and if there was a chance prayers would save him.... then pray I will.

Notes and comments of support flooded my inbox and Facebook wall. People I never so much as passed in the hallways of my high school, were asking their churches to pray for Jameson. People I only know from online made offers so generous, I get a lump in my throat just thinking about them. Local people offered to watch the boys so I could fly to Los Angeles to be with Jameson. I was discovering who my true friends were.