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.
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.