My earliest recollection of what I want to be when I grow up is from second grade. Miss Hersh, who was very young and we all thought she was so pretty, had us write a story about what we wanted to be when we grow up. I wrote that I wanted to teach the deaf. I have no idea where that came from at the tender age of seven. Since then I changed my goal time after time. At one point I wanted to be Mary Richards, played by Mary Tyler Moore. She lived in a cool apartment, had a cool job at a radio station, and come to think of it she looked a bit like Miss Hersh. Some of my other goals were court reporter, artist, writer, secretary, baker, restaurant manager, wife, and mother. I’ve done four of those, and have one as a hobby (you’re reading the result of it right now!). What I’ve come to realize is that my ultimate goal has always been to be normal.
I guess I never felt normal. We lived in a tiny house in which besides my mother I was the only female among three brothers and a father. Then there’s the whole leap year birthday thing. I only ever knew two other people with that birthday, a boy named Dennis and a girl named Cindy who were both in my grade. Following two brass playing older brothers, I was expected to play brass also so I played the French horn, but my friends all played flutes or clarinets. None of that made me feel normal. I never took swim lessons, but all my friends did and I still don’t know how to swim. Don’t get me wrong, I had a happy childhood and young adulthood so I’m not complaining.
Fast forward to Hillary’s diagnosis when she was 4 months old. In the ensuing years I felt even less normal than ever before. It was as if someone had stripped me of my clothes, painted me fluorescent orange, put me on roller skates and pushed me into the middle of the rink. I knew nobody who had to deal with the issues I was dealing with, even when we went to parent support groups. Having the kid with the most disabilities and challenges is a lonely place to be. When other parents were lamenting the extended time before their child moved from crawling to walking, I was hoping that one day mine would hold her head up without support. What I began to understand, however, was that feelings are the same no matter what the challenge is. That is how I connected with other parents of children with special needs.
Now I understand that being normal isn’t what you do or what your circumstances are. Being normal is facing struggles, over coming obstacles, laughing, crying, talking, praying, yelling, whispering and having feelings. Normal is frustration, elation, and neutrality. So apparently I’ve finally grown up. I am unique, but I am normal.