Monday, February 18, 2013

Eye of the Beholder

I remember with that vivid clearness which comes from those defining moments in one's life my last visit with the fetal medicine doctor. November 1st. I was by myself as R has proved herself a bit too much in the office. At this point, I was 90% okay about having a baby with Down syndrome. Most days, I didn't even cry about it. The ultrasound tech was the "nice" one for which I was grateful. The other one always acted angry, and I wondered if she was disgusted by our decision to carry Jude to term. 

When she ushered me into the room, we joked around a bit about the drama always to be found in this kind of office. I laid down, pulled my shirt up, and pushed the maternity panels on my jeans way down past the smooth mountain of my stomach. We both chucked as Jude kicked in response to the cold gel and the pressing of the probe. I was tired. We had been up late for Halloween. We had also done the "big reveal" in announcing Jude's pending arrival but we had not told many about her diagnosis. I teared up as I always did to see little body inside me. The lazy push of her legs, and the way she always seemed to be sucking on her fingers. And then it got kind of strange, and the moment was thrown in a darkness that would hang over me for weeks to come. The tech switched the machine to give me a 3D view. The image on the screen was frankly hideous. The tech didn't give me much time to look before switching back to normal view. She fumbled with the probe and chattered about some inane things clearly tying to distract me from the image. I tried to push the picture out of my head but it pounded me "Was my baby going to be monstrous?"

(Jude NOT a monster well sometimes but in a lovely way)

It was a strange moment because I did not think people with Down syndrome looked monstrous. I was starting to see them as I do a lot of people...some were attractive to me and others were not. But in that flash of image, a fear that shock with the shallowness of it, a fear that made me ashamed of myself, surfaced and it was hard to shake.

Before you all hate on me, I think it's important to give a little background. I used to think I was not a beautiful woman myself. I am a master at picking out the one picture where I look good but there are so many that are just kind of scary. When people see my kids, they say things to me like "Your husband must be gorgeous."  And I was even asked once in a kind of skeptical manner "What do you think your husband sees in you?" I didn't want that for my children. I don't know if it's pride I felt when strangers would say "You have the most beautiful children I've ever seen' or more relief. One of the ways we all too often live through children is in not wanting them to relive our own lives. We place our own insecurities upon them and then try to shield them for the pain of those past hurts. Hurts that of course were never theirs to begin with.

And how I was going to protect a child that even I found monstrous? Of course she wasn't born monstrous at all. She's beautiful and perfect. Look at that face. But I know there are some awful people out there who will only read the Down syndrome that is imprinted upon her face as surely as her race is...



When I was a child, I was bullied a lot. We were poor and didn't dress as expensively as the other kids. Plus I was strange. Super hyper and weird acting. I spent most of my fourth grade year being beat up during every recess. It was totally connected to my looks. The strange kid who dressed like a freak. And as I got older it just got worst because then I got fat and pimply. I have painful memories of people throwing food at me in the cafeteria and yelling "Eat it up piggy." There was one boy in seventh grade who called me pizza face everyday for months.

I went through some bad relationships because I wanted someone to tell me that I was beautiful and would hook up with anyone who would say those words. I ended up with guys who didn't really like how I looked or wanted to change it. I dated one man who constantly told me I was fat until I was starving myself to just get thinner. I had fantasies of sand papering the zits off my face. In my insecurity, I was completely obsessed with what I looked liked. I didn't care about any other aspect of my personality. I went through a few periods where I did things to make myself look really odd like shaving my head, wearing outlandish goth clothes. I liked myself during those times because everyone thought I was ugly anyway but this time I had some power in that ugliness manifested itself. It was a time when I felt very in control of my looks and how people reacted to them. In some ways I felt I had stepped outside of cultural definitions of beauty. I had reclaimed a space in which I could find in my extreme difference beauty.

When I look in Glamour I don't see people with Down syndrome. For that matter there are not many people with disabilities period. Last night H said to me "Do you want that for Jude anyway or for any our kids?" And I realized I didn't. My kids are so strong, confident, funny, clever and yes beautiful but their beauty comes from all of the things I listed before beauty. I don't want them to the kind of beauty that sells cars or clothes. I want them to be the kind of beauty that comes in the form of light shining through the trees or the way that beauty comes unexpected in a photo of smashed pumpkins. I want my children to be beautiful because how they love. I want beauty of to define the acts of compassion they engage in. As opposed to being loved because they are beautiful, I hope that as I have, they come to be beautiful because they love. 


2 comments:

Ginger Stickney said...
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