"One morning this summer when I was bored and new to the website Reddit, I decided to do an AMA, which means “ask me anything.” The AMA was about my life and growing up with something called Oseogenesis Imperfecta (also know as brittle bone disease) and about having broken around 400 bones in my 18 years of living.
I got some really good questions, and of course — since this is the Internet — some not so good ones as well, which I knew would happen. I answered as many questions as possible that day. The next day I spoke to an associate editor about sharing my story on HuffPost Teen. So here it is — my story about growing up in a world where sneezing could break a rib or spraying a can of Lysol can break an arm. No really, I have done both of those things.
In February 1994 I was born, and 36 hours after I was born, the doctors told my parents I had OI, or Osteogenesis Imperfecta, which is also called brittle bone disease. While my mother was pregnant with me, they knew there were “complications” with me as my growth was way behind, meaning I should have been bigger and my limbs should have been longer considering how far along my mom was in the pregnancy.
The doctors concluded I just had a form of dwarfism. They thought I would be short-statured but that nothing else would be physically wrong. Even though they only thought it was just dwarfism, the doctors asked my parents three separate times if they wanted to terminate, or abort, me. My parents — having faith and being Christians — declined without a second thought. Once the doctor told my parents I had OI, they said I wouldn’t live past 28 days because my lungs would grow bigger and my ribs would not, causing respiratory failure.
Thankfully, my ribs did grow and make room for my lungs to expand and contract. If your lungs can’t do that, it’s called respiratory failure, and you cannot breathe well or at all. But not everything went smoothly growing up with brittle bones. I wasn’t a “normal” baby who could play with any baby toy or crawl around wherever I wanted in the house. I couldn’t even be held like a normal infant. I had to be held and carried on a pillow. When they kissed my forehead, my forehead would dent in. I also didn’t move a lot like a normal baby. If I had, I would have fractured an arm, a leg or both.
My physical therapist taught me how to move and get stronger by blowing bubbles and having me reach for them. I also had physical therapy in the swimming pool. As you may know, when you’re in water, you are nearly weightless. That was a great thing for me — it allowed me to strengthen my muscles and keep my balance for sitting. I also walked in the pool. It is the only way I will ever be able to walk.
I had physical therapy until I was around 13 years old, and then my bone doctor said I no longer needed it, as I have good balance to sit up and enough strength in my arms and legs. I also got stronger by doing an IV called Pamidronate, which basically helps my bones stick together and stay strong. I will never have an average person’s bone strength, but the IV has helped tremendously. I have been on it for 12 years.
Growing up with Osteogenesis Imperfecta not only came with physical challenges, like preparing food or going to the bathroom on my own, but also some emotional ones as well. There’s a certian stigma to being in a wheelchair out in public. People usually react by staring at you, thinking you might be mentally challenged, or feeling sorry for you even when you are sitting there talking, laughing and smiling, and not even thinking twice about anything.
But going through these kind of emotional struggles, I was never alone. I have an amazing family and friends, including my mom, who is always there for me, and my cousin Tana, who is three years older then I am, and has been my best friend since I was born. When I was a baby they would tell her, “Don’t touch Drew,” but she would then walk right over to me and lightly touch me.
Ever since then we have been best friends. Then there is my brother — he is my best friend as well and always has my back. For instance, when I was little, there were some kids around his age and they kept laughing, mumbling and looking over at me. I didn’t think twice about it but my brother immediately came to my defense and followed them to see if they were making fun of me. To his relief, they weren’t.
My brother Cody has let me always “hang out” with him and his friends even though he is six years older than I am. Even to this day — I’m 18 and he’s 24 — he invites me over to his house to hang out with him and his wife and their friends all the time. Speaking of his wife, Paige is an awesome sister-in-law and is also one of my best friends.
Yes, I have a lot of best friends. So even though I was home-bound all through high school due to having a neck surgery and bad sinuses (unrelated to OI), I have a really good social life and I have my brother to thank mostly for that. High school is not easy when you’re handicapped, and I was so glad to graduate! Most people change when they become a freshman. I had two best friends in my grade then and both went their own ways. I felt abandoned by them.
By now you’re probably wondering, what breaks the most and the least? Well, what breaks the most lately are ribs, due to coughing and sneezing. I have never broken my pelvis or collarbone. The most bones I have had broken simultaneously is two at time, once two ribs, and another time an arm and a leg.
So there it is — just a little bit of what it is like to grow up, not only being in a wheelchair, but having bones that break very easily..."
Source: Drew Kirk, Growing Up Fragile, The Blog, HuffPost, September 12, 2012.
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