At Boston Children’s Hospital we care a lot about independence. In fact, striving for a world where every child can grow up to be independent and free of pain or illness is the ultimate goal of everyone on our team.
The star of that television spot isn’t a paid actor. It’s Sandy Ho, a life-long patient of Boston Children’s Orthopedic Center and guest blogger for Thriving. Here’s an inspiring piece she wrote for us, describing how her care team at Boston Children’s helped her achieve independence, both as a child and young adult.
By 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, 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.”
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 think my parents would have felt safer if they just sandwiched me between two fluffy pillows and locked me in the house to keep me injury free.
And it wasn’t just my parents. Growing up I spent hours under the close watch of aides, teachers and school nurses. I knew they had my best interests in mind, but it was also hard feeling like I always had an adult hovering above me. When it came to going to college I could hardly wait to experience a life where independence 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?
Of course my folks had had questions of their own: “What if you need to be taken in an ambulance? Will they know to send you to Boston Children’s 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?”
I understood their worries, and experienced a few of them myself, but I told my parents that I couldn’t “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. Fortunately my team at Boston Children’s felt the same way.
At the time, I was seeing Dr. Nedda Hobbs, associate director of complex care cervices (CCS) at Boston 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 how scared they were to send me off to school she was very calm, but also confident that I could go. To help she connected me with a caseworker 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 foot box of a dorm room?!
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 that none of the room’s 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 real independence. After what seemed like hours they finally left and I remember sitting there in complete disbelief that I had actually managed to get to that point. I also realized at that moment that independence wasn’t so much about getting out of my parent’s protective bubble, but creating one of my own design.
Check out more of Sandy’s writing at her blog, Perfectly imperfect.