The following is an excerpt from “The Patient Experience with Transverse Myelitis: An Anthropological Perspective” by Sanford J. Siegel, PhD, President of SRNA. You can purchase a copy of Sandy’s book on Amazon.
By Paul Narducci
Jonathan was born in October 2002. This was the happiest day of our lives. After trying for years to have a child, God finally blessed us with a healthy baby boy. For me this was a dream come true. I always wanted a boy and since we thought this could possibly be our only child, I was very happy. We didn’t know what we were having until Jonny entered the world and I was a proud father. All of my thoughts about going fishing, playing football and hiking were all going to come true. This is likely what most dads dream about with their sons. Seven months later everything crashed and burned and our lives would never be the same. As for dreams, that’s exactly what they are… dreams.
The day care called and said something was wrong with Jonathan; his body was limp and he was crying. To make a long story short, we brought Jonathan to Yale Hospital and that’s when we realized things would never be the same again. They didn’t know what was wrong with Jonathan but quarantined us. We had to wear gowns and masks. He was hooked up to machines and we were really scared. In the back of your mind, you think maybe a day or two and we’ll be home; things will be normal again. It is amazing how your body copes with things; lying to yourself isn’t always a bad thing. Weeks went by and Jonathan was finally diagnosed with transverse myelitis. What the hell is that and how come nobody here knows what this is. I remember saying, “I’m at Yale and you guys don’t know what my son has.”
We spent three months at Yale and watched our son die in front of us; it was one of the most insane experiences I have ever gone through. It has been years since this happened and I’m writing this through my tears, the words are difficult and I remain in deep anger and pain. Living your life in fear is the worst thing ever. After Jonathan left Yale, we spent another nine months in The Hospital for Special Care. Through that year, Bonnie and I never left Jonny’s side. We slept on cots and in chairs. Our family stayed with Jonny when we eventually went back to work. Either his parents, his grandparents or his great grandmother was always with him. People always ask me how could you do it, and my response is always, how could we not. I believe that he is with us today because of all the prayers and because we are always with him.
There have been many times when it looked like he wasn’t going to live. It seemed like I was always alone with Jonny when this would happen. After spending about a year in both hospitals, we were finally able to go home. We were going to be a family.
Jonathan is 13 years old and in the 7th grade. He goes to public school. He is a wonderful young man. He loves watching movies, fishing and taking walks with his mother. Bonnie and I made it very clear that a wheelchair and ventilator would never change what we do, just how we would do it. I have taken my son fishing, hiking and we play sports; we just do it our way. I’m just fine with that. I thank God every day for not taking my son, because he is truly my life, my world, my everything. Jonny recently made the honor roll and was student of the month. He is truly an amazing young man with his mom’s looks and his dad’s personality. Jonathan has touched many people’s lives and has inspired all of us to be better. My son is a quadriplegic, vent dependent and fed through a stomach tube. I wouldn’t change a thing. I thank God every day for allowing me to have my son in my life.
A Fathers Love
Paul D. Narducci
Wanting to die seeing you this way. If I could only take your place and throw it all away. I want things back the way it was, if I could only find a way. Seeing you lying there fighting to stay with thoughts in my head drifting away. Wanting to die if you were taken away; telling myself this wasn’t the way. Taking life for granted, you see, in my own despair you’ll be. Hoping for life because death seemed to be so near for you and me. I’m confused and wanting to take your place asking why this happened. I don’t understand, this wasn’t our plan. I just want it all to go away. If you were to go, I’d be with you soon forever together and that’s the way it should be. I go, you go, we go!