Wednesday, July 24, 2013

In Defense of a Cure

Should we cure Down syndrome? It is a question posed by The Lejeune Foundation on Facebook today. They haven't taken a stand, but they did link to a blog post that listed 3 reasons we may not want to cure Down syndrome. It's a wonderful post full of the insights I also have regarding a cure, but I also think there are major arguments for wanting to develop a cure.

During Mariana's first year of life my mother brought up something she had seen about people with Ds getting plastic surgery to look "normal". (I know, whatever that means, right?) My mom was surprised that there would be any objections to such a proposal as long as the people getting the surgery had the capacity to make the decision. My reaction was not so kind. I love the way Mariana looks. I love her eyes and her cheeks and her nose. I love her ears and her belly that may never be slender. As John Paul II put it, her body makes visible the invisible and I love every inch.

When I took a step back I realized I was considering me and what I wanted. I'm not exactly the best at accepting change in people. When my mother had a front tooth that needed to be fixed, I felt a little sad that her smile had changed. What was "fixed" actually took what I liked about my mom's smile. (I've gotten over it and my mother's smile is once again in my good graces.) What if Mariana has the capacity to make the decision to change her appearance so that the world doesn't judge her on sight? Could I, as her mother, refuse to support that?  I don't have to live with her face! While the harsh judgement of others might hurt me, it is she they would be judging. (I still have no answer to that question of support. She's my baby, and she's perfect!)

Mariana is delayed. At 16.5 months she wants desperately to catch up with her siblings. She wants to walk, she wants to talk, she wants to be like the other kids. Her behavior is that of a youngest sibling who wants to "Do it myself." But she can't. She will, someday, but not at the rate of her siblings. Her decisions will always be questioned, her ability will always be evaluated. She will always be under the watchful eye of her family and her doctors. What if she doesn't want that? What if she wants a cure? I may have accepted her diagnosis with ease, but will she?

I realize that a cure for Down syndrome threatens to rob me of the child I know. This question really isn't about me or Scott or anyone other than Mariana. I don't know if she'll see a cure as a reason to hope, but I'm not going to decide for her that she can't have it. She's a person and she'll have her own dreams and her own vocation, and that might include finding a way to live without the effects of her extra chromosome. Can I deny her that?

There is another reason for hoping for a cure. It is that dreaded number of abortions that occur when there is a prenatal diagnosis. How many people are not with us because they were conceived with an extra chromosome? How many parents were convinced that Down syndrome was a sentence? What if there were a cure, and what if it were able to be administered prenatally? Who among us would rather a child's life be terminated because we are afraid a cure might mean our children will change if a cure is pursued.

Should we question the science? YES! I posted here about my questions regarding that. I absolutely think we need to check and recheck this breakthrough. I do not feel any less protective of Mariana than before, and I'm not suggesting we run straight into the lab and sign up for human trials. Scientific research is a process, and should never be hurried. I just do not support the idea that we shouldn't ask, "What if we can?" and I don't think we should be offended by those who ask it.

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