Belated WDSD

Dear reader, World Down Syndrome Day was on 3/21. It represents three copies of the 21st chromosome that individuals with Down syndrome carry. Just a few notes before I share its significance to my life:

– please use person first language instead of “Down syndrome person.” Down syndrome does not define the individual. It’d be like if I referred to myself as Left Handed Girl – being left handed and a girl are just two pieces to me.

– please do not use the “r-word” (retard or retarded). Someone may use it to share something is silly or weird, so you can see how that would make someone with Down syndrome feel silly or weird. It’s 2019, let’s be kind to one another.

-Not all individuals with Down syndrome are kids, cute, and happy all the time. I am not friends with people with Down syndrome for these reasons. I am friends with them because they are kind, funny, independent, and great conversation. I am not a special person for being friends with people with Down syndrome – I am simply a person who is lucky to have many friends, some of whom happen to carry an extra chromosome.

There, off my soapbox. Two of the dearest people in the world to me are my late Aunt Leanne and my friend Kaitlyn. Leanne was this quiet, stubborn soul who loved to spend her days drawing cats and watching shows with angels. While some members of my family struggled to connect with her, she and I had this gentle relationship. I’d tell her about my life, and she’d smile. Sometimes if I was really lucky, she’d share a small sliver of her life with me. She was nearly nonverbal by the end of her life. At that point she’d give me her hand and touch her forehead to mine. I’d heard stories that growing up she was a spunky, sweet, naughty little girl, and I think I got a bit of that spunk from her. I miss her every day and I am crying as I write this. Her disability never made our relationship feel different or strange. It made me feel deeply connected to someone who I trusted to love me, even if she couldn’t tell me.

I’ve known Kaitlyn since we were 18. We met at Penn State and our friendship has grown and strengthened over the years. She has a job and a boyfriend and too much sass to handle sometimes. But she and I check each other. She tells me when I’m being obnoxious and I tell her when to act her age. I love our friendship. With whom else can I be that unequivocally myself?

There are many other friends I could have mentioned here, and I picture their faces in my mind as I type this. I am one of the lucky few who interacts with people with Down syndrome on a daily basis, and I am proud to know them.

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