There are so many things people say that are irritating. I don't really love it when people say "Down's baby", "Down's kid", or "a Downs". Luckily, I haven't heard a lot of the other pejorative terms, at least in reference to Cora. I'm not quite sure how I will respond when I do. One of the things that bugs me the most are the generalizations I often hear medical professionals make, as though Cora has every single potential medical characteristic that can be present with Down syndrome. Or when a legitimate and treatable concern is written off as just part of having Down syndrome.
But these days the comment that gets me thinking and reacting the most is something else. Usually it's a comment made by an acquaintance, someone I'm on friendly terms with. It's usually said by someone who already appreciates Cora to some extent and that fact alone keeps me from being truly offended. Months ago I had to consciously learn to interpret intent, when comment after comment was getting under my skin. I had to teach myself to be patient with people who are learning, especially when that person loves Cora. Because God knows I have had to learn too.
The thing that really has been getting to me though is the
"I really admire you" kind of comments.
Recently, while chatting with an acquaintance I hadn't seen in almost a decade, she asked me if we knew that Cora had Down syndrome before she was born. I told her that no, we didn't know. She then went on to say, "Wow, I really admire you." In hindsight, I realize I stopped listening at that point. I began asking myself what that really means. Did she mean to say that she admires me because I didn't abandon my daughter? Because that's what I heard. And it felt ridiculous to me. Beyond ridiculous.
Amazingly, it's not always ridiculous, though. A friend of mine has told me that when her daughter with Ds was born in the hospital, she noticed a newborn in a room down the hall that never had family around. Before leaving to go home, they learned that the baby had been born with Down syndrome and had been left at the hospital by its parents. Shock and disbelief, right? In Eastern Europe today, orphanages are filled with children with Ds, as parents routinely give up their children with Ds. It wasn't long ago that in the U.S. many parents sent their children to
institutions at birth, advised by medical professionals that it was best
for them and for their children. Those parents were told to tell
family and friends that their child had died.
And as we all know, the termination rates for babies diagnosed in the womb is searingly, frighteningly, painfully high. So maybe the fact that I am raising my daughter does seem admirable to some. It just doesn't seem so to me.
The truth is that if you asked me before Cora was born whether I would consciously choose to have a child with Ds I probably would have said no. Most of the parents I know with children with Ds would probably say the same. For most of us, learning our children's diagnoses was painful and scary. But wonderfully, most of us have been up to the challenge and our lives are better as a result. All of the parents I know are making decisions for their children, raising their children in the best way they know how, determined to provide the best possible opportunities. I am just one of those parents, trying to do the best I can for my child, loving her fiercely.
Perhaps I need to start asking more questions when I get this kind of comment so I'm not left to interpret their inference,
rife with hidden judgments about the value of my child. Perhaps those people aren't really saying that they admire me for raising a child they would not want to raise. Maybe they are saying that they admire the choices I am making as I raise her, or they admire the way I write about our life with her. Perhaps they admire my point of view. And if they really do think that Cora's value is somehow less and that I am special because I am making something good out of a bad experience, maybe that's just another opportunity to educate and show them that it is her that makes me special.
The truth is that I am the lucky one. I have the privilege and the honor to spend my days with a child that is so full of life and light and love that sometimes all I can do is be awed. I get to be the one to soak up these moments and bask in her love. Oh those moments.... when she rests her little head on me for a sweet hug, or dips her face down to me, presenting herself for kisses. Heck, if I weren't me, I'd certainly be jealous of me.
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| Yeah, you know you wish you had your own Cora Bean, don't you? |
