Reflections - Courtney, the older sister

As hard as it is - I try to respect my other children's privacy. I do not believe they resent having a sister with down syndrome, nor do I believe we devote more time to Alex. It has always been very important to me to split my time equally between my kids.

That said, I do not know if I am successful. I know Courtney and Tom never begrudge any time I spend with Alex, nor do they complain. But, I am not sure I know how they really feel.

However, when Courtney told me that she wrote about Alex for her college applications I became very curious. I asked her to share her application essays with me, but she did not. Once again I found myself respecting her privacy, and did not pursue it.

But, I did make a deal with myself. Courtney has wanted to go to the University of Pennsylvania ever since I can remember; my father went to Penn as did my grandfather, my aunt, my uncle and one of my sisters. When we went to visit the campus last year she fell in love, it has truly been her dream.

We learned last week that Courtney was accepted as an early decision candidate to the University of Pennsylvania. She will be attending the School of Engineering and Applied Science as a member of the class of 2014. We couldn’t be more proud and happy for Courtney.

This brings me to my deal with myself. I told myself if Courtney got into Penn, I would ask her again to share her essay. I believe a sibling’s position in a family with a child with special needs is so important. Perhaps just an important as the child with special needs. Having down syndrome does not affect just Alex - it affects John and I, and especially Courtney and Tom. We couldn’t be more proud and happy that Courtney is sharing her voice, as follows.

It is easier to rip a newspaper along the grains. There, the paper is uniform and the tear is clear. I had envisioned my life to be along the grain. I wanted to be the same as everyone else. My school, my clothes, and my music resembled everyone else's in my grade. My family, however, didn't.

In 1st grade I realized my sister was different. This meant that I was different through association. Alex will only ever be as smart as a middle school student- her standardized tests scores can attest to that. I have a sister who won’t be able to live on her own.

School was mine. I entered the decorated classroom and forgot my family at home. I had new friends and they were the social group of the grade. What eight-year-old kid doesn't want to be the center of attention? As far as anyone was concerned, I was just like everyone else.

But I really wasn’t. My sister called for me from across crowded hallways and across the congested playground every day. Eyes would turn to me, wondering how I was going to react. When I heard her, I turned the other way and didn’t respond. My cheeks would burn and I wondered what people were thinking. I wanted to get away from her and I couldn’t. She was always the next bedroom away.

Eventually, I stopped trying to live my life in the control seat. I stopped living my own life in general. People saw me through my sister, so that is what I became- Alex's sister. I sat in the corner while she was out talking to people and singing her off-key songs. I became what I thought people perceived me as. I was quiet and reserved, and I gave center stage to my sister.

I don’t remember exactly when I realized that I didn’t have to be second to her. Alex participates in a lot of activities for children with disabilities, one being therapeutic horseback riding. I spent a lot of time with my sister at her horseback riding sessions, where I watched her confidence grow and her fear become insignificant. She was a real person, and could handle herself well. Who was this girl that caused me so much grief? Did I make her up?

The newspaper was ripped, and there was no going back. I took another look at my life. I saw my sister as a girl who, yes, loves to be the center of attention, but at the same time grew as a real person. She wasn’t afraid to be herself around new people, or around friends. What I ran from in school wasn’t my sister, but it was the idea of a child with Down Syndrome, a child whose different. It was unnecessary energy that I put into hiding from her that I should have spent understanding my sister.

Every weekend, I watch Alex as she jumps out of the car before I turn off the engine. Watching her makes me warm even on the coldest winter days. I love my sister as a person, and through our differences, I’ve come to realize she has helped shape the person I am. My friends aren’t along the grain, they are far from it, and I love them for always being themselves. By keeping my world open to opportunity, I’ve stopping looking at how far I’ve deviated since elementary school and have come to realize how close my life is to the one I’ve always wanted.

Wow, Courtney, this is beautiful.