Our patients’ stories: A protective bubble of my own

by Boston Children's Hospital staff on July 21, 2011

Sandy Ho

I’ve always known my parents would forever see me as their baby. And being their little girl, I knew that it would be hard for them to watch me leave for college to live in a dorm, all by myself. I appreciate their concerns and love, but it didn’t change the fact that after high school I was ready to be on my own. As a kid with Osteogenesis Imperfecta (O.I.), a brittle bones condition, I could not wait to get out from their protective bubble, which I had lived inside of for 18 years.Growing up there were many milestones that I watched my friends and two unaffected brothers experience while I sat on the sidelines. Whether it was learning to walk, learning to ride a bike, taking karate lessons, going to sleep away camp, or getting a license  – it seemed that I had grown up constantly waiting for my turn. I’d be rich if I got a nickel for every time I heard, “Some day when you’re stronger you’ll be able to…” or “When your bones are stronger we won’t worry as much” and “You probably shouldn’t do that, it’s not safe for you.”

 

People affected with O.I. have fragile bones and may experience hundreds of fractures over the course of their lifetime. Since my bones are so fragile I rely on my power wheelchair to get around.  My fractures have happened for reasons ranging from a clumsy fall to coughing too hard. It can be nerve wracking, and there are days when I was surprised my parents didn’t sandwich me between two pillows and demand I stay in the house to keep me injury free. So when that long-awaited college acceptance letter came, I was more than ready to head off to my own dorm room.

Sandy graduates with good friend Jill Schreider

Because my medical condition can change without any warning I spent many years in school under the close watch of aides, teachers and school nurses (and of course, my parents.) Despite all those watchful eyes I still managed to get into a great deal of trouble at school. I knew people had my best interests in mind, but I always felt that an adult hovering around me was somewhat annoying. In middle and high school I would frequently zoom away from my aide, purposely losing myself in the throng of kids and backpacks just to get a few minutes to myself. Sure, arms may have been broken and shoulders jostled, but I loved every minute of being on my own. I felt a huge sense of relief whenever I “played recklessly” (as the adults in school would say). Those “reckless” moments were the times I felt like I could be myself and enjoy a taste of independence. So when it came to going away to college I could hardly wait to experience a life where that was the norm. I was excited and curious about what it would be like, how would I manage, and even a little afraid: would I really be able to do this?

One of the many forms that came with the acceptance letter was the Residence Life form, the one asking whether or not I would be a commuter or living on campus. There have been fewer arguments that I have fought harder for than convincing my parents I was ready to live at school. In the days leading up to their decision my parents hammered me with questions: “What if you needed to be taken in an ambulance? Will they know to send you to Children’s Hospital Boston and to contact Dr. Shapiro?” “What if you hurt yourself in the shower? There might not be anyone around!” “What if you break a bone? What if you got stuck in an elevator?” Eventually I told my parents that I could not “what if…” my life away; if I did that then all of the risks they had taken in raising me would have been for nothing.

Sandy and her brothers, Timmy and Andrew

At the time, I was seeing by Dr. Nedda Hobbs, associate director of complex care cervices (CCS) at Children’s. Dr. Hobbs had known me since I was in elementary school and saw me every year for my annual physicals. When my parents told her about their gazillion concerns regarding my wish to live on campus I remember that she was very calm the entire time. She was very encouraging of my independence and assured my parents that it was indeed possible for me to live at school, but there would be a lot of research and details to be worked out prior. She connected me to a case worker within the department who helped me and my parents connect with the college’s Disabilities Services for Students office. From there we arranged a home visit, countless meetings, many emails, and even more phone calls to connect the dots. Everything from what to do if I fractured, making certain that I could access everything in the dorm building, to a fire emergency plan was sorted out. All of my parents’ worst nightmare scenarios had a plan of action and got the parental stamp of approval. By the end of that summer the only thing that still had yet to be planned was how was I going to pack up all my stuff to move into an 8×12 feet sized box?!

That summer was more than five years ago but I will always remember the joy I felt when my entire family and the stacks of boxes were crammed into my first dorm room. My parents paced around (in what space they could find) and fussed over the small details like making sure my bed and fridge was at the right height, and none of the electrical cords would get caught in my wheelchair. As my family helped me set my room up I could tell how difficult yet proud they were in helping usher me into my first taste of independence. After what seemed like hours they finally left and I remember sitting in my dorm room in complete disbelief that I had actually accomplished getting to that point. I realized at that moment that independence isn’t so much about getting out of my parent’s house, but living in a protective bubble of my own design.

Check out more of Sandy’s writing at her own blog, called Perfectly imperfect.

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