Nina Demci: I’d rather be born with my disability than acquire it – Part 1

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I don’t remember exactly when I met Todd because I was never formally introduced. I just always knew who Todd was. He was always there. I never told Todd that I looked up to him because like myself he had an IQ within the normal range. Like Todd did, I had, and have to do things differently my body, but for a different reason — safety.

I was born with Osteogenesis Imperfecta {aka Brittle Bones(OI)}, and lived at Deaconess Hospital, which is now a part of MetroHealth, from the day I was born, March 2, 1970, until I went to live with the Gauchat family. His mom and dad, Dorothy and Bill (I refer to them as Mom G. and Pop-Pop), took me into their home, circa April 23, 1970, after I was discharged. My biological parents couldn’t cope with having a second child, back-to-back, with a disability. Since little was known or written about OI, the thought of keeping me at home was out of the question. Growing up with OI presented its own unique challenges. The biggest was not injuring myself and being as physically independent as possible. A few examples of things I did, which most kids do, that resulted in injuries are: hitting a Pampers box (7 years old); attempting to push my manual wheelchair (9 years old); or, trying to ride a Big Wheel (6 years old). These seemingly minor events ended with a broken bone.

Until my 20th birthday, I hated my birthday, as well as my older brother Joey’s, who also lived at the children’s home with me, because it meant my biological mother Irene she was coming to see us. So every damn birthday, his and mine, I’d pray she wouldn’t show. Alas, she did. She stressed me out to the point of biting everyone’s head off before she showed. I would get so stressed because she wanted me to love her like I loved Mom G. and Ree-Ree. I couldn’t because I didn’t know her the way I knew them. One time when I began to cry she told me, “I’ll take you out of here”. Thus, I stopped crying. I think this is when the cold sweats, shaking, and throwing up started when she did come to visit. The last time I threw up was in seventh grade.

For kindergarten and first grade, I was tutored at home (I’m referring to the children’s home.) by a woman named Pauline, whose last name I don’t remember, which means I probably never knew it, and Mrs. Ehman, respectively. At Todd’s sister Anita’s insistence, I was mainstreamed from second grade onward. It was my second grade teacher Mrs. Cogar’s first year teaching, and let me tell you I scared the crap out of her because not only did she have the usual teacher duties, she had to make sure I didn’t get hurt. The poor woman. I began second grade going three days a week for half a day, and at some point it changed to five days for half a day. By third grade I was going a full day as well as a full week. Even with broken bones, I was expected to, and did keep up with my work. So, I taught myself to write with my left hand.

When I was in fifth grade Avon Middle School wasn’t handicapped accessible, which wasn’t a problem, because fifth and sixth grade were on the first floor along with the cafeteria. So, I was able to eat lunch with my friends. Sadly things changed in seventh grade which was upstairs along with eighth grade. Once I was upstairs, that’s where I stayed until the end of the day. How did I get upstairs in a manual wheelchair you ask? Anita’s husband Dick had to pull it up the stairs and bump it down the stairs after school. Since I was up there the whole day, which included lunch, I had to eat in the LD classroom.

4 thoughts on “Nina Demci: I’d rather be born with my disability than acquire it – Part 1”

  1. What a well written story, Nina! I have seen you in many years, but I am so happy to read this essay!

    Like

  2. Hi Nina,
    this is a hello from Germany! I was a volunteer at the Wayside in 1980. I am friend of Mary Wirscham / Encinias.Great to read. Thanks. Your tuturs name was Pauline Degan, I visited her in Chicago.
    Are you interested in some fotos of yours? I would look thru´mine, love Christiane
    had been called Christine then

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  3. Write more, Nina!
    I love ur stories! The pix are priceless. I miss Ree-ree, Harry, and Mom G, and Uncle Todd! Love ya!

    Like

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