I was brought up with the belief that I could anything. When I thought I could not, my Dad would give me “the talk.” “Sheila, are you American?” he would ask. “Yes daddy, I am.” “What are the last four letters of American, Sheila?” “I can.” The conversation would end. My parents did everything in their power to make me independent because they knew it was the best thing for me in the long run. It was not the easy choice for them or for me. I have to say I did not really understand how difficult this must have been for them until about five years ago.
I received a call from my childhood hospital, Shriners Hospital for Children. They asked if I was willing to speak to a family whose child has TAR Syndrome, the same disability I have. “Of course, I would be happy to talk with them,” I replied. At the time I had no idea how this family, who would later became friends, would change my life. Our first telephone conversation lasted at least two hours. This woman was only a few years older than I, had a two-year-old son with TAR Syndrome, and was trying to make sense of it all. The conversation brought up many memories, some painful and others cheerful. She wanted to know how I learned to be independent and what I had to go through to get there. After a few conversations we decided to meet.
Meeting them was very exciting. This would be the first time in my life that I would meet another person with my disability, TAR Syndrome. When they arrived and brought their son, Michael into my house, I looked at him and saw my life flash in front of my eyes. I felt sadness as I remembered the pain that I had gone through, and thought of the pain that was yet to come for him. But quickly that sadness changed to wonder and amazement. This two-year-old was scooting around on the floor just like I did as a child. As I watched him do things, I wanted to him help, but held back because I knew he had to learn.
A few months later we met at Shriners Hospital for Children to see what they could do to help him walk someday. I became frustrated because they did not give much hope. Shriners needed to do the same for Michael as they had done for me! It was after this meeting that I started to understand what my parent might have gone through when I was growing up.
I can not really say if it is worse to live through life’s challenges, or to watch another go through it. I do not think control exists with either situation, and both have their own success and failures. I think loneliness is there because no one else really knows what you are going through. I went 25 years before I met anyone with TAR Syndrome. My parents met an eighteen-year-old boy with TAR Syndrome which gave them some hope but not understanding.
At this point in my life I have come to believe that I am here in this life to be a teacher, a student and/or a lesson. At different points in time I have been each of these things to someone. And as I change and grow I will be continue in these roles. Life has not always been easy, but it has always been interesting. I do not remember a lot of my childhood because I have blocked out the pain. But I do know that I started off with fierce determination and that has not changed. Today I love myself for the person I am and live to inspire myself and others around me.
TAR Syndrome (Thrombocytopenia with Absent radius) is a rare genetic disorder which is characterized by the absence of the radius bone in the forearm, and a dramatically reduced platelet count. This syndrome may occur as a part of the 1q21.1 deletion syndrome. Symptoms of thrombocytopenia, or a lowered platelet count, leads to bruising and potentially life-threatening hemorrhage. Other common links between people with TAR seem to include heart problems, kidney problems, knee joint problems, frequently lactose intolerance and often thumb hypoplasia
