For the first 20 years of my life I knew of only three other people with TARs, I was told one boy was six months younger, the other boy was six months older and then there was the young man who was 18 years older than me. I have one memory of speaking with Andy, the young man, on the phone I remember him telling me that he drove a car and flew a plane. My parents had met him once at Shriner’s Hospital when I was only a few years old. The brief moments of connect that Andy had with my family and I had more impact then he may of ever known. First he gave my parents hope that I would become independent some day. He was also living proof that you could grow up with TARs and be healthy and happy. I also recently learned that his dressing sticks gave my parents the idea of creating my hook a.k.a. dress stick. Mine would develop into something much different but it gave me the independence that he had in his life. Our conversation on the phone made me realize that I was not alone in the world. Someone else was out there that understood what I was going through in my life. While in college I meet a woman with TARs for the first time and I learned that there was long arm TARs and short arm TARs. Unfortunately, our only common thread was TARs and did not become very close friends in the end.
A number of years later Shriner’s Hospital took me up on my offer that if there was anyway that I could help please call me. There was a family with a two-year old boy with short arm TARs and they wanted to talk with another with TARs or others who understood TARs a bit more than them. I told the hospital that I would be happy to talk with them please give them my number. I waited for their call. Our first call lasted hours. She had so many questions about how I had learned to do things, how my parent dealt with having a child with a disability, and what was my medical history was like. It was exciting to think that my own life experience could help this family in a real positive way. I realized later that I was the hope for this family that Andy had been for mine. We had a number of conversations after that and then we decided to meet.
Meeting young Michael was exciting and difficult all at the same time. When they all first arrived Michael was brought into my apartment and they ran back to car for a moment. I remember seeing him sitting there on the floor and for a brief moment my childhood flashed in front of my eyes I was sad for him because I knew what kinds of physical and emotional pain was yet to come. Quickly, every else was in the house and the fun began. I got to watch Michael do things in his own way which was amazing to watch. It gave me a peek into what my childhood may have been like from the other side. This new friendship gave me a new understanding to what my parent did for me and how hard it must have been for them. Over the last few years we have continued to be friends talking on the phone and visiting. Michael has had surgeries now that give him the hope of walking on his own some day.
The internet has been an amazing tools to interact with other people who have TARs. At this point in my life I have met, spoken to, and emailed many people with TARs and some of their family. My story is online and it has begun to give hope to more than one family. I have had the chance to met others and support them in their independence. That story is for another day.