(Guest post by Andy Flowe – Andy blogs at Go With the Flowe)
Eventually, I intend to write about the downsides of growing up with a sibling with special needs (although they usually turn out to be upsides as well, at least in the mind of this unapologetically idealistic college student). But first, I want to get a little corny. Every year, my family packs our bags and heads out to the annual Chromosome 18 conference. We’ve been to over 15 conferences, held everywhere from San Antonio (the home of the Chromosome 18 Registry) and Plymouth, Massachusetts to Anaheim, California and everywhere in between. We’ve turned it into our annual family vacation, and we all look forward to seeing our second family at the conference every summer.
The thing that I personally enjoy the most at the conferences has been all of the other siblings I’ve met. It’s really helpful to talk with others who have experienced the same struggles and joys of living with a sibling with special needs. We usually find a room away from the prying eyes and ears of parents and sibs, and swap stories, be they about how hilarious, sad, frustrating or just plain annoying our siblings can be. At the 2007 conference in Plymouth, I guiltily admitted to the other sibs that I had milked up the relationship I had with my sister for a recent college application essay. My admission was met by almost unanimous laughter from the older siblings, and when the laughter died down they all cheerfully admitted that they too, had played up the “I have a disabled sibling” card in their college applications. “But,” one friend assured me, “It’s okay, because its all true!” And I realized that despite how cheesy the essay sounded, it was, for the most part, true. So without further adieu, I present to you the corny, unedited version of the essay that got me into college four years ago. Enjoy:
My sister has been and always will be the single most important person in my life. Sammie is 20 years old and she supposedly “suffers” from Tetrasomy 18p, but I’d argue that she’s never suffered a day in her life. Tetrasomy 18p is a rare chromosomal abnormality that causes both behavioral and mental impediments, and Sammie is the happiest, most loving, generous, caring person I know. My mom recently asked me “When did you realize that Sammie was different?” I thought about it for a second, then I thought about it again, and I finally realized that I never thought that Sammie was different, she was just Sammie. There’s nobody like her in the world, and I could not be blessed with a better big sister. In middle school, my dad and I would get into shouting matches roughly once a week over some trivial thing and we’d have to stop and figure things out when we looked over to find Sammie bawling her eyes out, tortured by our fighting. My dad and I would each give her a hug and talk to her until she felt better, assuring her that we still loved each other. Whenever my mom or dad would come home with a new boyfriend or girlfriend, the standard of judgment was always Sammie. If Sammie liked my dad’s new girlfriend, then we all liked my dad’s new girlfriend. She was able to weed out the bad matches and my parents made several romantic decisions based on Sammie. At times, I was jealous that Sammie received more attention than me because of her disability, but I always found myself back in Sammie’s room with her arms around me assuring me that she would always love me. I was invincible within those arms.
I’d like to think my writing has grown a bit since writing this, and the corniness of it (especially the last line) totally makes me cringe, but I still stand by the substance of it. At the last few Chromosome 18 conferences, we’ve held a “Sibling Panel“, where a bunch of us siblings get up in front of parents and answer questions about what its like to live with a sibling with special needs. This past year, after the panel was over, a few parents came up to me to talk, and one told me “Gosh, Sammie is just so lucky to have a brother like you.” The compliment came as a surprise, and it was definitely flattering, but I found myself feeling a little disappointed that I hadn’t completely gotten my message across. If there is only one thing that I can teach others about growing up with a special needs sibling, it’s this: Sammie isn’t the lucky one, I am the lucky one, and there is absolutely no way I would be the person I was today if it wasn’t for her. She pushes me to be a better version of myself every single day, and all she asks for in return is some love. And I’d like to think that if everyone had a Sammie in their lives, the world would be a whole lot better place.
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