(I am republishing this post I wrote last year because today is World Down Syndrome Day so I thought it was fitting.)
I recently read a series in the New York Times all about having a baby with Down syndrome. They were really hard for me to read. Especially the piece written by the couple who ended up terminating the pregnancy because the husband didn’t want the child, although the wife did. That hit me like a shot to my gut, because when I was pregnant with Katherine, we had genetic testing done and the tests showed that she had an elevated risk for Down syndrome.
That was really hard.
I know how hard a life with Down syndrome is. That made it harder. But I also know how well my sister is doing, how happy her life is. That made it much much easier.
And ultimately of course, K Dub doesn’t have Down syndrome, but for us, it wouldn’t have mattered. For me, it wouldn’t have mattered. I was overcome then, as I am now, with a primal mom feeling. Regardless, they will pry my child from my cold dead hands, no matter what, and if we have any more children, I’m not having testing done, because it won’t matter. It doesn’t matter to me. I am as pro choice as they come, and still, as I said, they will pry MY child, any child of mine, from my cold dead hands.
But I am in a unique situation.
The thing I am always struck by when I read these articles – people don’t know what a baby or a kid or a person with Down syndrome is like. Are they imagining institutions and children who can’t talk or feed themselves?
I cannot speak to what it’s like to have a child with Down syndrome, to how it feels when people stare in public or tell you that your special angel was a gift from god. Even I don’t know what that’s like, because I have a sibling with Down syndrome, not a child. I would imagine all of those things – the things the rest of the world brings with it – are insanely hard.
But I can speak to what the life of an adult with Down syndrome is like, in a tiny corner of the world, and I am here to tell you that well, it’s a damn good life.
It’s really hard to describe Annie’s place, her life, without stating exactly where and what it is, but it’s a pretty amazing place. A sustainable farm, with cows and chickens and gardens and tomatoes and eggs and raw milk. Spotlessly clean. Warm, and bright, and with vases of fresh flowers from the yard on all the tables. Set in a little town that loves it and sustains it and learns from it.
Annie can knit scarves and she makes pictures from felting that you’d be proud to hang in your house, should you be able to get your hands on one. She goes out to dinner and to movies and reads books and sends email. She has a job at a local artisanal cheese maker. She cooks breakfast for her house every weekend, she collects eggs, she cleans out barns and she has a cow that she is in charge of milking, except right now that cow is pregnant and gets to take a rest. She yells at everyone else to hurry up on hikes. She makes apple cider and churns butter. She bakes muffins as presents. When she arrived she weighed over 200 pounds, and now she’s lost over 80. She has a boyfriend and best friends and people who care for her like she is their family, because she is. She is polite and well spoken, but she can also be a total pain in the ass, because she’s not an angel sent from god, she’s my sister, and we fight just like sisters fight, sometimes, but at the end of the day she goes home to her house, and I go home to mine, just as it should be, now that we are grown.
You should also know that my sister is one of my favorite people of all time. She makes me laugh every time I talk to her. I have never, not never ever, wished she was not here, and when I think of her, the word “burden” never comes to mind. I have often wished that she did not have Down syndrome, but I have never wished that I did not have her.
This is not meant to be a judgment or a contest, or a ranking of the correctness of the decisions of others. To each their own would be embroidered on a sampler and hung on my living room wall, if I knew how to, you know, embroider. It’s just me saying that nope, Annie’s not a burden. I am glad she is here. And I am absolutely certain she is glad to be here as well.
My mother believes this place has saved Annie’s life. I just think it’s given her one. And while is is expensive and it’s small and it’s not always perfect, it is one way. It exists. It isn’t, of course, everyone’s life, but it is someone’s life, and that someone is my sister.
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