What My Sister Has Taught Me About Myself (written by, Ben Iannuzzi…guest blogger)
A couple of weeks ago, I had a few friend’s sleepover, when my sister barreled down the stairs yelling the loudest good morning she could muster. She was awake before all of them, and despite both my parents and me telling her not too, she couldn’t control her impulse to wake up all of my friends. We would try to distract her with breakfast and cool videos she loves, but it didn’t help she still woke them up. My sisters name is Sydney and she means well, she just wanted to see my friends and couldn’t understand that they were not ready to get up yet. Sydney is 12 years old and was born with a rare genetic syndrome called Smith Magenis Syndrome(SMS). A tiny piece of DNA is missing from Chromosome 17 and it causes my sister to struggle in every area of her life. She is not like other kids, she behaves like a 3-year-old, she has no impulse control, and can meltdown at anytime and anywhere. Even though I know she can’t control herself, I still find it hard not to get mad at her when she acts like this, especially in front of my friends.
I was 4 years old when Sydney was born and while I was too young to understand how different she was I did realize that whatever was going on with her always had to come first. As the years went on it became clear that the SMS was not going away and for a long time I struggled with how hard it was for my sister to do anything I asked her. While Sydney can be loving, funny, and really sweet, her erratic and embarrassing behaviors made me angry. When she was around I had very little control and it frustrated me. I found myself not enjoying her and becoming resentful that my needs always had to take a back seat.
When I was 13 I went to sleep away camp for the first time and loved everything about it. I can honestly say it was one of the best experiences of my life. Being away from home for those 4 weeks gave me a new perspective on things. I realized that my sister misses out on all of these experiences. She doesn’t get to do the things I get to do, she doesn’t get to have the friendships I get to have, and she doesn’t get to grow up in the same way I do. I came home that summer with a new appreciation for Sydney’s limitations. I realized that it can be so easy to get bogged down in all the bad parts of life which just wastes time and energy. If I let myself I could spend my whole life feeling bad about my sister, but I work hard to not do that. Instead I am learning to focus on all the good things that have come from having Sydney in our life.
My parents set this example early on when they formed the SMS Research Foundation. I was only 9 at the time so I didn’t really appreciate what they were doing. But now I do, and it has made a huge impact on my life. It has taught me how to be proactive in solving my problems instead of just complaining about them and it also taught me how I can make a difference in my sisters’ life. Last year I started my own fundraiser called Recycle For Research where I collect recyclables from people and the money we make from recycling we donate to the foundation to support SMS research. Instead of feeling resentful of her limitations I began to feel excited about making a difference. I then went on to present a bill that I worked on in my model congress club. The bill was to improve education for children with disabilities. I presented at the Yale conference and it passed!
Life with Sydney has not been easy. She will never stop trying to wake my friends up when they sleepover and she will always have a hard time listening but as the years go on my patience and empathy have improved. While I wish she didn’t have SMS, I have learned a lot from it and I have an appreciation for how lucky I am. My goal is to one day take over the Foundation with my brother and continue to make life better for her and for others that struggle with Special Needs. Sydney has been such an integral part of my life and I couldn’t imagine myself without her.