Sarah Defies Gravity

what one little chromosome taught me about love, life, and defying gravity.

Reflections (or a lack thereof) on Down Syndrome after one year

I hardly think about Down Syndrome anymore.

The reason for this is twofold. The first is that there are bigger things on Sarah’s horizon right now, and those are things that are forefront in our minds, every minute of every day. It’s impossible not to think about those bigger things, because they mean everything. Being a kid with cancer is a lot more significant than being a kid with Down Syndrome right now, and of course my focus is on getting rid of the cancer, on making it go away, which is not something I think about Down Syndrome, even if I could take it away, I would keep it around.

But the other part of this reason is just that Down Syndrome is no longer significant. It’s no longer world changing or life altering, it just…is. It was so momentous at first, so big and scary, and for awhile when Sarah was little I was obsessed with Down Syndrome. When I looked into her eyes, I was looking Down Syndrome in the face. She wasn’t Sarah, she wasn’t my baby, she was Down Syndrome, stamped in big red letters across her sweet little face.

And then, slowly, that stamp began to fade and her personality began to shine through. Her jolly nature. Her attitude. Her stubbornness. The way she prefers Dadad to me. All of the little things that make her Sarah started to chip away at the big things that made her Down Syndrome, until I started to forget. Even the hurt of her abandonment began to fade away the more time I spent with her, the more that ugly stamp faded.

Soon I wasn’t thinking about Down Syndrome much at all. There are moments, of course. When I meet other babies her age and see them toddling around when she’s just begun to sit, when I hear them saying “ma ma” and “da da” when she’s still firmly in nonsense babble territory, when I see them clap and wave and blow kisses, while Sarah is still more interested in waving her arms around catching invisible fireflies, I feel a pang of sadness. The stamp blooms across her rosy cheeks. And then I push it back. Wipe it away. Consider the perspective Down Syndrome has given me, the new outlook, the openness to joy and the celebrations of every little moment, no matter how insignificant they may appear to the outside world.

Sometimes now, I forget about Down Syndrome. The stamp is gone now, not even a trace remains. I don’t feel anger or pain about it anymore, so it has no reason to mar her pretty face any longer. I have stopped prefacing all of my statements with “this might be different because Sarah has Down Syndrome, but…”. She is no longer Down Syndrome. She is simply Sarah. Sarah whose eyes light up when Dadad walks in the room, who flirts with all of her nurses and steals their hearts away, who tries to yank her NG tube out so that she can stuff it in her mouth (at least, given what she does with the excess tubing, this is what I assume she wants to do with it…), who is full of sass and an effervescent personality that can light up a whole room, who sometimes sits, perched in her Boppy throne, with a look of concentration and contemplation on her face so intense that you can’t help but wonder if she knows more than we think.

I still fight the good fight, of course. I advocate hard, shout from the rooftops that Down Syndrome is OKAY, that it’s nothing to be afraid of, that it’s downright fantastic! I still work hard to dispel the myths, the ignorant misconceptions that people hold dear. Because that’s important, for Sarah and for all of her friends. But Down Syndrome no longer consumes my life. It no longer controls me. It’s just a part of my life, like Game of Thrones or brushing my teeth or any of the millions of other things that make up our little world. And it’s a pretty wonderful part, at that.

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2 thoughts on “Reflections (or a lack thereof) on Down Syndrome after one year

  1. I’m always amazed by how little Down syndrome matters now, and you’ve put it so beautifully.

    I feel like I’ve stopped seeing the big red “Down syndrome” across Ellie’s face at the same time strangers are finally able to see it. And I absolutely don’t care.

    Hope your princess is doing well, she’s such a little fighter and I believe her diva-ness is working to her advantage.

  2. What a great post. And happy anniversary to you too!

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