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How My Kids Find Connection to My Sister Who Had Down Syndrome

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“Tell me a story about aunt Kirsten,” my daughter, Anna, demanded this morning on our way to pre-K.

I looked at her in the rearview mirror, at her little crossed ankles, revealing mismatched socks between pink unicorn boots and pink stretchy pants, forever too short. She often declares things from her booster seat in the backseat of my minivan, in her crossed-leg, pursed-lip, queenly way. Anna is what people call a “spirited child.”

“Well, she was kind of a mischief maker, like someone else I know.” I said. Anna grinned. I racked my brain for stories that didn’t involve Kirsten causing some sort of mayhem, that wouldn’t inspire more poltergeist-like activity in my daughter. Kirsten was a similarly “spirited child,” and the first story that came to mind was the day she wandered off in a department store, to be found some 20 panicked-stricken minutes later, in the vestibule, sitting on a bench next to the public ashtray with a used cigarette dangling jauntily from her lips. I wouldn’t share that story with Anna, who earlier this week broke into my medicine cabinet and squeezed an entire bottle of Nair on the floor because she was “making a potion.” It’s her fault that my house smells like burning tile and that I now have a full, bushy mustache. Oh, well. It helps to stroke it when I’m deep in thought.

I’m joking. Sort of.

We had been discussing my sister, Kirsten (“Special K” to her friends), who died 20 years before Anna was born, because Anna has decided that Steven Spielberg’s 1982, “E.T.” is her favorite movie, and it was one of Kirsten’s favorites, too. I only recently introduced E.T. to my kids, because it took me a lot of years to be OK watching K’s favorite movies after she passed. I could still hear her in my head, acting them out in front of our TV, line-for-line, moving her dolls as proxy for the characters, in a kind of a “live Rocky Horror Picture Show experience” sort of way. Her other favorite movies included more treasures from the ‘70s and ‘80s, like “Harry and the Hendersons,” “Mac and Me,” and “Pete’s Dragon.” Also, Kirsten was on my mind today because it’s World Down Syndrome Day, and Kirsten had Down syndrome, or Trisomy 21. Thus, Anna’s mismatched socks. The schools all encouraged wearing mismatched socks to acknowledge and celebrate those with Down syndrome, and we happily complied.

Re-watching these movies that I’ve seen hundreds, maybe thousands of times, with my junior first-time viewers, has been less painful, and, in fact, a lot more fun than I thought it would be. First of all, they’re fantastic, Oscar-winning/nominated films (well, maybe not so much “Mac and Me,” but the others for sure). Kirsten had great taste. “E.T.” is perhaps a little dark and complex for a 5-year-old, but she seems to understand the important stuff; Elliott is a child whose family is going through a big change, and sometimes he feels ignored and alone. He found a best friend in the sweet, stranded alien, and the alien and he don’t share a lot of language, but they share feelings — literally, in a sci-fi emotional doppelgänger sort of way — in the tightness of their bond. They love and need each other, and their oddness and outsider status only make them support each other more. Plus, this movie is funny as hell. (I laugh out loud every time the mom first laughs, then scolds Elliot when he calls his older brother “penis breath.” That is maybe the most relatable moment of parenting put to film in all of history).

Second, there’s a common theme to these movies that only is apparent to me all these years later. They are about aliens and orphans who are gentle, loving and mischievous, and who enter like misfits, but find their place with friends who love them. My kids, and, I imagine, Kirsten, could relate to that feeling of being afraid and alone and needing a friend. They also can picture themselves being that friend, that small hero to someone in need.

Instead of kicking up my grief, watching these movies with my kids has been joyful. It feels like some sort of holy connection with my sister that my kids wouldn’t otherwise have had, them arriving decades after she died. They’ve heard stories about aunt Kirsten (not the one about the mall cigarette, but others) and seen some home videos filmed on enormous 80’s camcorders, but I think sharing these movies that she knew inside-and-out, and felt deep in her person, gives them a better understanding of who she was. They can laugh and cry at the same parts she did, or feel relief at the same moments she felt it, and it feels like I built them a bridge to help them cross time to each other.

So now, my daughter and my sister are connected through their shared love of “E.T.”…and their passion for causing trouble and making me feel out of sorts. I’m good with that.

Happy World Down Syndrome Day!

Image via Pixabay

Originally published: March 21, 2019
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