Friday, April 29, 2011

About a girl

"Down syndrome."

Most of the time you hear about it when someone's gone for one of those 12 week nuchal translucency screening tests, or a 20 week amnio. Someone casually says they've gone to the doctor and have "ruled out Down syndome."

And it's in the news now and then. Stories about medical risks of a child with Down syndrome, statistics concerning the heart, thyroid, etc. Stories about new ways to find if your baby will have Down syndrome, and the procedures you can do to end such a pregnancy. And if you ask a doctor, they'll tell you about the possible health concerns.

Unless you are personally affected by a person with Down syndrome, this is what you know. The stereotypes, the news stories, the medical issues.

And then there are those of us who have a little child with Down syndrome living in our homes. A daughter or a son weaved into our worlds. A house that is not known by complications and risk factors but instead by the way that our child adds to the amazingness of our lives.

We were pregnant and learned "about Down syndrome." But for the past 4+ years our world has just been "about a girl." A beautiful girl who is just like any other little girl. Her extra chromosome doesn't make her less or different, any more than any child has similarities or differences. Her weakness is math, but you should see her learn complicated choreography that most adults can't conquer. Her speech isn't perfect, but she knows the words to more songs than I do. Some things may be hard for her, but I've never seen a person have a bigger smile on her face as she overcomes life's challenges.

Down syndrome is part of our world. But life, daily life, is about being in the kitchen with a little girl on a stool helping me cook each night for dinner, before hopping down to set the table - she knows exactly what we need - the number of forks, plates, glasses... It's about booking seats 6 rows from the stage on the aisle for Mamma Mia for her birthday, because she will go crazy singing along to the Abba songs (and it'll be the second time she's seen it on Broadway!). It's about using each experience to teach her and learning more from her in the process. It's about witnessing beautiful friendships that I'm kind of jealous of, because people are naturally drawn to my girl. It's about being overscheduled like any other child - swimming, soccer and hip hop dance being part of her normal weekly routine, in addition to preschool, play dates, and going down the tallest slide at the park. It's about braiding and styling her hair, while bribing her with gummy vitamins so she'll sit for a little bit, and then having her run to a mirror to tell me she's "pretty." It's about the "hug and kiss" that she demands from her parents, and the way she's so self-sufficient for a little girl, and that she was kind of happy to watch part of the royal wedding on tv - especially the little flower girls - and how she asked if she can be a princess too. I told her, of course you can.

My hope is that one day, Down syndrome is more associated with the people we've gotten to know that have this extra chromosome - who they are, what they do, how they're normal valued members of society - and not the medical conditions they might have or the learning disabilities. Personally, I get migraine headaches, had Lasik surgery to fix my poor eyesight, and had an ulcer in law school, but would hate for that to be all that the world knows about me.

Lilly is just a little girl and is genuinely the best daughter a mommy could ask for. She's fulfilled all of my dreams of what my child would be like, DS or not.


Becca said...

*Sigh* You said it so beautifully. I love our girls. :-)

Amy said...

I love all your posts, but I really love ones like this. You do say it beautifully.

When I went for my NT exam with Mira, I sat down to review my initial results with the actual doctor rather than the genetic counselors. He was a thousand years old and I wanted to punch him - every single thing was "And this test looks for Down Syndrome in this way and this one looks in this way and..." on and on about Down Syndrome as if it were the only thing they look for. He even attempted to offer me a few negatives and came off as not even really understanding the medical side of the disorder. Clearly not the human side.

I tried being subtle at first - I'm a speech therapist, I have worked with kids with DS, I have friends with kids with DS, etc. He just kept at it. Maybe even got worse, like clearly I would understand how bad it is. Finally I'd had it and said "I don't want to hear any more about Down Syndrome. You are testing for a lot of other very important disorders and I just want to prepare myself if my child has one. I am not afraid of Down Syndrome. I'm here to find out if my child has something that's incompatible with life."

I was so angry that he was taking in people who he knew had no risk factors thus far, preaching his DS hatred, and sending them out into the world with his prejudice. Never mind people who actually were at risk. I complained to my OB since he referred me there, and he pointed out that a couple with a diagnosis would get more info and see more people but he apologized). Fine, but this is their first interaction? And for others, this is their only interaction? Just awful. Thank God for people like you, Jon and Lilly.

Jenn (@mommy_grrl) said...

Lovely, lovely post.