Friday, August 13, 2010

Would you want a cure?

One of the forums I frequent had a “Question of the Day” for yesterday asking if we would want a “cure” for Down syndrome if it were available. This is a very common question that comes up in forums and conversations. Many bloggers have addressed it. (I may have, though I can’t remember for sure and can’t look back to check just now.)

I generally have the same answer. “No, thank you.” But I thought I’d share a bit more and reprint my response from the forum.

Not interested. No, thanks. Smile

I don't think I can know what part of Braska is due to her T21 and what isn't. And due to that, I wouldn't take it away.

[Here I quoted someone, but I don’t have permission to share that quote… it basically said that she feels that DS is only a tiny part of the child and that taking it away would not change their personality or who they are.]

I see it differently. I believe a lot of her personality and many of the things we love about her are THANKS to the DS. It's in every cell she has, so in my mind it can't possibly be uninvolved in making her who she is. I'm not in any way willing to risk her changing--her sweetness, her compliant nature, her ability to forgive immediately when wronged, her always-ready hugs and giggles. I know of no child, including her sister, who has this kind of nature (to this degree) who does NOT have DS, and for that reason, I'm not interested in taking that chromosome away.

When we had to deal with the heart issues, I hated it. The heart issues, not the DS. But even then, I wouldn't have changed HER just to avoid the heart surgery. She's had 47 chromosomes since the second she became a being...long before she had a brain or a heart or crooked pinky fingers. So it's more a part of her than the "symptoms" or manifestations, and I'm good with that.

Would I like to help her learn easier? Sure. Would I love it if she would magically eat tomorrow? Of course. But not enough to risk losing any bit of her.

I think she was created precisely like she is, so even when it's frustrating to deal with people, schools, and the world in general, I wouldn't dream of saying to God, "No thanks, I'd like this re-done, please."

She doesn't "happen" to have DS. I believe she was created exactly that way. For me. For my family. And I'll keep her just as she is!

It’s always interesting to hear how others feel about it. Though this is a small and very tight-knit forum, there are those who feel very differently about this. Clearly, we don’t have this option or a “cure”, so I don’t think it’s worth getting worked up about, but it is interesting to hear people’s perspectives on it. Feel free to share if you’d like.

6 comments:

  1. We had dinner with a couple who has an 11 yo with ds. They actually brought this topic up at dinner and said they would definitely take away the ds if they could. They felt like any family that didn't think that way was lying because of the struggles our kids may face.
    I didn't really know how to respond b/c Jason & I too think Alayna was God created, perfectly just they way she is and I wouldn't change a thing about her.
    Everyone has struggles and victories ds or not.

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  2. Well RK, I think you know my answer already but thought I'd comment anyway. I would definitely not chose a "cure" for Laynee's DS. It was the very essence of who she was. The challenges that a DS family faces, well that just aides in growing us a little more. It molds and shapes us into caring and compassionate individuals. The most offensive comment I have ever received since Laynee died is "at least she doesn't have DS anymore." I would give everything I own to have an extra chromosome in my home once more. So.....think I'd pass on the cure!!!

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  3. Making me go deep on a Friday night, are ya?

    I actually like (and use) the phrase "happens" to have DS. For me, that is a way of saying that she is many things (a girl, funny, cute, sensitive, etc.) oh, and she also has DS (which does not define her) but is a part of who she is. For me it is not a statement on whether or not she was designed exactly the way she is by our Creator, which I believe she was, or if it was by happenstance, which it was not.

    That aside, I have to nit pick. Take away DS? What a loaded question that we as parents hear all the time! Take away the many, MANY wonderful qualities that DS tends to bring, take away the changes we see in ourselves as parents and siblings of a child with special needs, take away appreciating things that really matter, take away the amazing world that we now have access to through other families who are blessed with a loved one with DS or other disability, take away a love that cannot be fully described? Heck no! Yet, it's not that simple, is it?

    Take away the pain she has already endured from health complications related to that extra chromosome, take away any pain she will feel in the future related to physical effects of DS, take away emotional pain that she or her siblings or I (if I'm being honest) may feel from a world that needs a lot of changing? Heck yes!

    In the end, we cannot take it away. She is Sophie and I love her exactly as she is.
    ---Jen

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  4. This is such a beautiful blog post. It really helps to understand the point of views from parents with a children who happen to have DS. This has totally inspired me as I work toward my degree is special education. Thank you so much for sharing.

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  5. Interesting post RK. I also find the idea that we would have the same child if we took away her medical and genetic issues difficult to wrap my head around.
    It is odd the way people phrase this, as Rochelle's friends did that people are lying if they say they would't change it.
    Of course I wish my child did not have medical and developmental issues but I don't wish to change her - I can't so the idea to me is just ridiculous.

    I love how you trust the idea that Braska was made perfect for you and your family. This is so beautiful and transcends the wishing discussion
    Lisa

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  6. I really don't know if it's hormones, extreme exhaustion, or what, but you just made me bawl like a baby. Beautifully written! Braska is such a little blessing and has blessed so many people, people she doesn't even know (me for example) simply by being her.

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