Monday, February 23, 2009

Choosing Naia: A Review

This has been difficult for me to sit down and write. I've had it in a draft form for at least a week now.

It's not the book. Not the topic so much either. It's the timing.

I didn't have a prenatal diagnosis with Playette. Suspicions of her having an extra chromosome first came the morning after she was born. It was a shock to say the least, but, looking back, I'm grateful that was one thing I didn't have to be concerned about during my pregnancy. I asked about Ds throughout, but I was always "poo-poo'd" with the "You're too young to worry about something like that" talk.

Since having my daughter, I've met many people who received their child's diagnosis via prenatal testing. I did not participate in any prenatal testing past an initial blood test at my first prenantal appointment.

All I've ever learned about the topic of prenatal diagnoses, I've learned from others on message boards or phone calls. It's not my own story to tell.

Choosing Naia is a very good example of two parents telling their own story. It's done via a journalist who followed their journey, first through newspaper articles and then expanded into a heavily-researched, very thorough, full-length book.

First off, I liked the book. I really did. The edition I read has a photo on the front cover of the parents with Naia, celebrating her first birthday. So, honestly? I knew how it ended. There was a choice to be made and they, well, chose Naia. Regardless of knowing how it all ended, I didn't feel spoiled in the least.

The story begins around the time that they receive their "poor" prenatal testing results and ends when Naia is about 3 years old. It's engaging, educational, emotional, resourceful...pretty entertaining (for lack of a better word) for what comes across as non-fiction. Of course I'm sure my appreciation is greater given the circumstances of my life, but I'd like to think that it's just a good book. Period.

I received the book from Lisa, a fellow blogging mama with whom I enjoy sharing ideas, thoughts, and even literature. She first posted about the book back in December. I looked at that post last week and noticed my response in her comments section. I thought it was interesting enough to post here in part:
I understand what you're saying about being glad you (we) weren't presented with having to make a choice. I like to think that for parents of a child with Ds, whenever they found out is what was right for them. I say that because those I know who received a prenatal diagnosis say that they were glad for it so that they could research beforehand. I know me though and I would have been doing more moping than learning. Thank goodness everyone's not like me.
Looking back at that statement now, after having read the book, is interesting. Personally, I don't see the benefit of a prenatal diagnosis. There's only so much "research" you can do. I think the analyzing/depression/seeing your child as a diagnosis only far outweigh any benefit that could be incurred by contacting your local Early Intervention program in advance. I understand that parents can gain acceptance and be able to welcome their child differently, possibly more positively, having had plenty of time for the news of the diagnosis to settle. I get it. I really do.

But I also see that prenatal diagnoses lead to a 90% termination rate. So most parents are not "researching." They're moving on.

And as the parent of a child with Ds, that makes me uneasy. Uncomfortable. Sick to my stomach.

People don't want babies like mine.

Lisa posted about this after she finished the book.

My comment on that post:
I wonder the same thing...about what people around me have chosen to terminate after a prenatal diagnosis. 90% is a lot! They have to be around me somewhere, right?

I also don't sit well with the notion that folks who choose to terminate have a baby "that died." No. It's not the same. I've seen mothers who know their child is sick or won't survive birth and they continue to delivery, sometimes at full term. The former parents have no right to compare their journey to that of the latter parents. If you choose to terminate, so be it, but don't act like it was natural causes. That just fires me up because it's so dishonest and unfair.

You ever seen one of those "TMR" [Termination for Medical Reasons] forums? If you can handle it, you'll see women patting each other on the back and supporting one another through the "loss" of their children with Ds. It's terrible. If you're going to do it, own up. Don't act like a martyr.

Ugh. Now I'm mad.
It's not a pro-choice/pro-life debate. Really, it's not. Please don't confuse my transparency with my policial views.

It's about how I feel. A lot. And it's even more relevant now than ever. I've got all kinds of things going through my head these days. It has to do with friendships and support and how to be appropriately congratulatory when someone to whom you've offered both friendship and support receives the "good" news that their child won't turn out like yours.

To be continued...


Michelle said...

oooh, this has me all riled up, and not even in a pro-choice/pro-life way.

What really gets me, is that people make a choice, and then 'mourn' the loss of that child. They made that choice!! We lost our daughter, with no say in the matter, and we'll mourn her the rest of our lives - I'd give anything to be able to raise her with her siblings, even with her having Down syndrome. DS is so not scary, ya know??

I have a friend who had a failed adoption and told me how they were mourning the child they didn't get. They didn't get him, because they CHOSE NOT TO, since he MAY have had some health issues. That's just being an asshat.

Wow. Thanks for riling me up while I ate my lunch. Hahaha - maybe I'll stay away from Choosing Naia?

Lisa said...

I am so on the same page as you Chrystal. And as always, I really enjoy reading your take on things. I look forward to your review of "Jewel."

Crystal said...

There's an article in today's Washington Post that talks about testing for Ds: