Friday, March 20, 2009

World Down Syndrome Day

March 21st, 3/21, is World Down Syndrome Day. It probably won't shock you that Down Syndrome Awareness is a cause near and dear to my heart. I feel called to share my experiences with Ellie with as many people as possible, to help dispel myths and fear of the unknown. You might have picked up on that.

But what I feel compelled to write about this year is the no man's land I feel myself caught in, where I am a part of the Trisomy 21 community, but I have some significant differences with many in that community. I feel . . . at odds.

First is the prenatal diagnosis thing. There seems to be consensus within the T21 community that prenatal testing is problematic and that the safe, affordable, new 1st trimester diagnostic test for DS is a Bad Thing. I'm all about availability of prenatal testing. Rah rah rah! But I do share the concerns of many withing the T21 community; we just differ on how we think we should address the problem.

Second is the issue of Treatment. Here is a greater difference, I believe, than those over prenatal testing and abortion. Here, I don't think we share goals or concerns at all and I feel a little alien.

Before Ellie was born, I met with her pediatrician, a woman who also has a daughter with Down syndrome, and I still remember many of the things she said to me. The conversation was immeasurably helpful to me at that time, and the doctor has been a huge source of support ever since.

One thing she said was that her daughter was only 2 weeks old - it was a surprise post-natal diagnosis - when she realized that she wouldn't change her if she could, wouldn't remove that tiny extra piece of DNA even if she could wave a magic wand and make all of her chromosomes typical.

Huh, I thought. I can't imagine feeling that way. I look forward to coming around to that!

I still haven't. I think that what makes Ellie uniquely Ellie is more than just her extra chromosome. And if I could make things easier for her, I would do it. If there were a safe and effective treatment that would help her brain process more efficiently, I'd offer it to her as soon as possible.

I love Ellie as she is. But I see the ways in which she gets hurt and discouraged. I see the ways that life is so much harder for Ellie than it is for other kids, including her sister. I see . . . how much harder we all have to work - but especially Ellie - to do everything.

I would take some of the pain from her, if I could. I would take some of the frustration from her, if I could. I would still love her, and I believe that she would still be herself. I also think that she'd be a happier kid. Treatment? Yeah, I support research into treatment.

Many parents don't, and I get that. I'm . . . on the outside, within the community but not of it, coming together at times but standing separate often. It's an interesting feeling.

I think it's kind of how my Ellie feels a lot of the time, actually.


Cate said...

I find the community stuff is really hard. Like there's an official party line and I'm not always on board. Like when someone says "our kids" -- I understand the sentiment, and yet, it bothers me.

Jessica said...

What a wonderfully beautful post, Sarahlynn. You know how I feel about Ellie and I can completely empathize with your sentiment. It isn't a rejection of who (or how) she is indicative of every mother's wish for their child.

Stushie said...

Beautiful post, Sarahlynn.

BTW, what did you think of the President's joke last night about the Special Olympics on Jay Leno? I thought it was sad to see such a leading figure for change make such a foolish and insensitive remark.

Anonymous said...

Wonderful post Sarahlynn.

Sarahlynn said...

Cate, me too!!! "Our kids" isn't really so different from "these kids" or "those kids," to my ears.

Thanks, Jessica. :)

Stushie, thank you! I'll go look for that clip on YouTube; we were out of town last week/end and I missed the show. Hmm.

Thanks, Rebecca!