Wednesday, June 6, 2012

Under My Skin- Blog Hopping!

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.

Yeah, you know you wish you had your own Cora Bean, don't you?


  1. I agree. Sometimes I think this comment is so loaded full of judgments of what my life must be like. Otherwise, why say it?

    I always wonder where this comment comes from... all I do is parent my kid the best way I know how, and believe me, I fail sometimes!

    Now if you want to tell me you admire me because my kid is stinkin' cute and you want to know how I did THAT, by all means, ask. :P

  2. "If I weren't me, I'd probably be jealous of me..." LOVE that!!! I'd be jealous of you, except I have my own at home, too. :-) :-) Yeah, interesting about that "admiration." I guess I always thought it to mean that they admire how strong I've been in the face of (seeming) adversity in having a child with a disability. Some people just can't imagine being able to handle it, even though we know they'd be just fine if they had to. I'd love to know what some of these people say when you press them for more, to see just what they *really* mean...

  3. this is fantastic. all of it.

  4. well said. Precious, beautiful Cora! Meredith Smith

  5. Oh I can understand what you mean by hearing that kind of sentiment! I want to say I'm not doing anything heroic ... I'm just raising my daughter! What is so noble about that?! I can't imagine giving birth to my child and being so disappointed in a diagnosis that I walk away from her in the hospital. I can't imagine going home without a baby to a house that is very prepared for a newborn, so sad :(

  6. I get the "you're an amazing mom" all the time. The truth is, I'm about as far from amazing as you can get. I really am just like any other mom out there, my child has a few different needs, that's all. But yes, I wonder too what people are thinking when they say those things. Most people would do the very same thing as us, if they are decent human beings. And I agree with you whole-heartedly, we are the lucky ones!

  7. Oooh fantastic post Leah!! I too despise the "you're so amazing" or, "you're so strong" lines...It makes me feel like people think it is a tremendous effort to love my child and I do a good job at pushing my way through it...blah.

    My kid is awesome and I am not "amazing" for loving him...I'm a Mom.

  8. well said! I admire you but its because you are awesome at writing about your thoughts and Cora is so completely adorable!

  9. One I heard recently was "she has special needs, right?" It wasn't meant as malicious, and in fact, I think was mostly a clarification question to actually hear what we said. But it felt weird anyway. I think sometimes, from the outside looking in, people are uncomfortable. They really want to know and hear about our experiences, but they don't know how to break in or "break the ice." So they stuff their big ol' foot right up into their mouth!

    I think the most important piece (for me) from this post was that I need to be patient with everyone, and most importantly be patient with those who love Cora. They really do want to know her; they just need our help ;--) nvm

  10. I too have been admired for being Ben's mom. But the truth is, Ben has been a much easier child than Colin. Yes, Ben has a busy schedule but he is an easy going kid. Colin, whom I love so much, is so stubborn! His new favorite sentence is, "I said no!!!!!!"

    I do have to say that I admire you for writing so eloquently on this topic:) I agree with everything you wrote!

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