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Winter 2003 Table of Contents
Versión Español de este artículo (Spanish Version)

Gifts from my Sister

By Susannah Kenley, age 19, San Francisco
Reprinted with permission from reSources, Vol. 10, No. 14 (California Deaf-Blind Services).

Growing up as Laura's older sister hasn't always been easy, and without laughter I hardly think I could make it through. Tears and laughter, pain and happiness, embarrassment and pride, and thousands of other emotions have all been a part of the adventure of being an older sister to a sibling born with CHARGE Syndrome. Being born with CHARGE, Laura does not hear, is extremely vision impaired, and has heart defects. But besides all of that, Laura is a goofy teenager with lots of personality, strong likes and dislikes, a very smart and pranky sense of humor, and a little attitude to go along with her age of seventeen. Laura is an extremely complex girl. And living with her has been no less if not more complex than Laura herself. Laura has made me feel thousands of different ways. She has made me want to crawl under the table at a restaurant and hide from people staring, scream out in frustration, punch a wall, slam doors and cry. But Laura can also make me laugh like no one else can.

Just like any other relationship between family members, Laura and my relationship has gone through many phases, both good and bad. The one thing I can say for sure is that over the years, being Laura's sister has become a lot easier. I can't ever remember a time in my life when Laura was not my little sister; she was born when I was only two years old so she is a part of nearly all my childhood memories. I even went to preschool with Laura at the San Francisco Hearing and Speech center for a few years. I loved going to school there because I could not only hang out with my baby sister, but I learned how to sing kids' songs using sign language and hang out with kids like myself and like my sister. Although I was not aware of it then, being in an environment like that let me know that I was not alone and that there were other kids like me who were siblings of deaf children. Trips to PAAVI—an early intervention family training project—and Easter Seals to play were also wonderful experiences for the same reasons. Going to summer camps that focused on families of children with disabilities were always exciting places to play, relax, and also to spend time with people who were dealing with the same life experiences that I was. I will always be thankful for the opportunities my parents gave me to get involved in the deaf-blind community at such an early age. Spending lots of time with Laura when I was very young is probably the reason why the two of us have stayed so close over the years. Having fun with Laura when I was young set the tone for the type of relationship I have with her now. Laura's life is full of doctors, teachers, therapists and caretakers. Being involved in Laura's social life from the start has let me know that I do not have to be another doctor or teacher of Laura's, and it is okay for me to just be her sister and friend.

It is easy to feel responsible for a sibling with disabilities, especially if you are older than they are. My parents have helped me work through that by explaining that I am not now and never will be the only one responsible for Laura. Although I know I do need to help out with her, I also know that my parents are doing the best that they can to support Laura, even in case something should happen to either of them. Wills and future living situations and dreams for Laura have all been explained to me, so I have never been left worrying whether or not I will be spending my time as an adult caring for Laura. Communication about these real-life, real-world issues has made me feel comfortable about being Laura's sister in the future. Having Laura as my little sister has undoubtedly changed the way I look at myself and at the rest of the world. It has taught me how not to get embarrassed so easily, how to deal with the unexpected, and how to appreciate the little things in life (like the fact that dinner has not been thrown all over the kitchen for once, or that no one threw a fit in the middle of the shopping mall). But more than that, Laura has taught me that lots of people out there need help (myself often included). Because of Laura I have chosen Sociology as my area of study in college, and have spent spare time volunteering in California and Louisiana. But most importantly, because of Laura I am able to look at life in an extremely positive way and with a sense of humor, and although that may sound cliché it is the truth. Not many people can or ever will be able to appreciate life and its blessings the way that I can and my sister Laura is the person I have to thank for those gifts.


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