Osteogenesis Imperfecta (os-tea-yo-jen-es-sis im-per-fect-ah), or commonly known as OI, is probably a word you’ve never heard before and therefore, don’t have any idea what it means. Most people don’t and that’s probably because it’s not something a lot of people have. You can’t catch it and it’s something you’re born with. When someone does have it, most of the time they don’t even know it till years after they’re born.
The simplest way that I, and most others, can explain it is that it’s a brittle bone disorder or bones that break easily. Now, even if someone has it, their bones aren’t necessarily as fragile as someone else who has OI. This is because there are many different types of OI. In fact, there are eight. Now the first isn’t necessarily the worst or the least serious, they aren’t ordered by severity.
When my mom was still pregnant with me, they knew that something wasn’t right because it seemed that none of my long bones were growing. They didn’t know exactly what was till I was born. They didn’t even after I was born, telling my parents I had a severe form of dwarfism and that I wasn’t going to make it through the night.
You can imagine how hard it must of been on them and how happy they were when I did. They ran some tests and finally concluded that I had Osteogenesis Imperfecta and whatever form I have, is it’s severe for that type. I’m lucky though, that I don’t have Type II, the most severe type of OI because it’s also lethal. I believe that I have either Type III or Type V.
My first few weeks of life were spend in the hospital, being poked and prodded by doctors running test after test. My parents and grandfather came to the hospital every day. Eventually my parents got fed up and my dad told them he would bring me back every day if he needed to, but they were taking me home.
When I started elementary/primary school, I only weighed 14 pounds. Luckily though, I had an aide that was with me the entire time my first year or so of school to watch out for me and keep me safe. I’ve always had one up until the day I graduated, but they weren’t around constantly, mostly when classes changed.
A lot of people most likely wouldn’t want an adult following them around when they reached a certain age, but I didn’t care. I’ve always had one so I was just use to it and so it didn’t bother me, but they also became my friend. The first aide I had was with me from when I started school till grade nine. She was like my mom away from home, and I was upset when she could no longer be with me anymore.
When I started high school, they knew I was able to keep myself safe, knowing what was okay to do and not do. I learned how to avoid people and what to watch out for in crowds after years of going to the mall and dances with my friends. I had an aide, but because of my age, they were a friend to me and also to my friends. I was on my own most of the time though since my friends were always there if I needed them and watching out for me.
When I was younger, I was just like every other kid. I wanted to play outside with my friends. I knew I had to be careful and I was. I always would tell my friends they needed to be careful if they started horsing around near me. I don’t thing people realized that I was able to look after myself, that I didn’t want to break a bone more than they didn’t want me too.
I’ve broken more bones and had more surgeries than I can count on my fingers and toes. You would think after so many, I would be more use to it and it would make it easier each time it happens. I still crywhen we’re heading to the operating room and I still feel a little sorry for myself when I’m stuck in a cast. Although, I’ve learned how to deal with these things much better when they happen; ready to get up and tackle them head on.
I’ve been in a wheelchair basically all my life, but it doesn’t stop me from living like anyone else and doing things I want to do. Most of my really good friends don’t even notice my wheelchair when we’re together, I’m just me. They know I have boundaries of what is safe and what’s not, and as I’ve gotten older, things have been a lot easier. As a kid, you want to run around and play sports and I couldn’t do those things. I found other ways of occupying myself; playing Barbies or drawing and then eventually getting into the internet world.
I do get stared at sometimes in public places and I’ve had kids, or parents, come up to me asking why I was in a wheelchair. The staring bothers me, but only for the simple reason because it’s rude and if you want to know why I’m in it, then just ask me. I’m not offended by people asking me, where most probably would be. I’m open and I’d rather people knew if instead of just staring and watching me as I’m out with my friends or family, watching what I’m doing.
I know there is a reason that I have OI; what that reason is however, I’m not absolutely sure. Maybe it’s to help out other who have it to learn to deal with it? Something inside me says that I need to get it out there, have people learn about it. Maybe that’s why I’m writing this, hoping it will touch you in someway to see that we’re able to be strong and not let this bring us down, you should be able to be strong and not life bring you down either.
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