My sister Ashley has Angelman syndrome. I tell you this first because she and her disability have become so much a part of my own identity. Ashley is so special to me. Ashley went to all of my gymnastics competitions when we were kids, and she stood by my side as the Maid of Honor at my wedding. Ashley will always be the special part of me that makes me different.
When you are a family with a child who has special needs, you often don’t notice the things that make you different. It’s the only life that you have ever known. I don’t mean the obvious differences like parking in reserved spaces or pushing a wheelchair through the grocery store. The differences are in the actions that become second nature to us. I walk through the mall holding hands with my 32-year-old sister. It never crosses my mind that most grown sisters don’t hold hands in public. I laugh when Ashley makes bossy noises at the waiter when she thinks they may take her dinner plate before she is finished. I forget that the teenage waiter is terrified of Ashley’s hungry glare. I laugh because this is just the life I know. This is my “normal.”
Now that my brother and I are adults, I think the question my parents can’t quite move past is: Did our children without disabilities turn out “normal?” The short answer is no. We are different. Our life and our family have always been different. We were different than our grade school classmates who didn’t know what a seizure was, and we are different than families that go skiing or hiking on vacation because wheelchair accessibility doesn’t matter. But different isn’t bad.
I can’t help but wonder who I would be if I did not have a sister with a disability. It is clear that she has made a huge impact on my life. In so many ways, she has made me a better person. Ashley loves freely, and she has brought that out in me too. I care deeply about the people in my life. I don’t hesitate to say “I love you,” and I give hugs often. On the flip side, because of Ashley, I am terrible at sharing. When I was a kid, if I received a gift that was breakable or had pieces that could be a choking hazard, I was told to hide it and keep it out of Ashley’s hands.
Ashley has made me a great judge of character. All my life I have helped Ashley assess who feels comfortable around her and respects individuals with disabilities. I have a knack for identifying people with compassion and understanding. I have always been good at recognizing other people’s character, but at times, I have been challenged by my own. As a teenager, I struggled with substances and self-esteem in an attempt to say look at me, I’m special too. Having a sister with a disability has developed so much of what is good in me, but it has also brought on extra challenges and difficulties.
Over the last couple of years, I have lovingly shared with my parents the truth that no, I did not turn out “normal.” Having a sister with a disability has made me different. I love how when we watch a movie, we all squeeze together on the same couch because Ashley is obsessed with having us all close. While I love that Ashley feels comfort in our closeness, I also know that this is not how many families sit to watch a movie. Our life is completely different, and most days it doesn’t even cross our minds.
My sister and I are best friends. She is non-verbal, but her smile shares a secret that only a sister can decode. I know she is saying “I love you” with every kiss and hug.
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