Tuesday, December 23, 2008

Finished

I finished Choosing Naia. I have to say that it was a difficult read . . . not intellectually, but emotionally. The long, drawn-out struggle the couple had over whether to abort or continue the pregnancy after they found out their baby had Ds was painful to read.

And it's made me wonder: with the abortion rate so incredibly high in cases of prenatally diagnosed Ds, how many people am I actually acquainted with who have received a prenatal diagnosis of Ds and then aborted? How many people am I acquainted with who have this secret? And do they look at Finn and think "Thank goodness." Or, do they look at Finn and feel regret? Or maybe they are able to just completely separate it from themselves. I don't know.

When I first mentioned that I was reading this book here, Jen commented that she had read the book and was very disturbed by a passage about a couple who do choose abortion via early induction. The woman actually goes through labor and gives birth to a stillborn baby girl with Ds, and she talks and sings to the baby, takes photos, and they have a funeral. I, too, was very disturbed by this. Angry, even. They chose to abort, and yet they talked of their loss. What right did they have to mourn their little girl when they chose to never give her a chance at life, a chance to realize her potential, whatever that might be?

Towards the end of the book, there is a chapter devoted to talking about a young woman with Ds named Ashley Wolfe. She is very high functioning. She loves to read (Harry Potter books are a favorite), she lives in an apartment with two roommates, she has two part-time jobs. She carries on intelligent, thoughtful conversations with her parents. In one passage, her parents are discussing with her over dinner the abortion debate with regard to prenatally diagnosed cases of Ds. They tell her, "But there are other people with Down syndrome who are much more retarded than you." It was seriously bizarre to read this. And the fact that she is so high functioning actually creates its own issues for her and now has me wondering if hoping that Finn is as intelligent and capable and high functioning as possible is actually such a good thing. For Ashley, she apparently deals with a lot of loneliness because she's intellectually far ahead of most of her peers with Ds, but not quite able to keep up with her non-disabled peers. So she's in what her parents call a "gray area." Kind of a permanent social limbo. This saddened me deeply and has me wondering what the hell I should be wishing for and striving for for Finn.

All in all, it's a book worth reading, but I wouldn't categorize it as uplifting like Road Map to Holland. I finished the book in tears because it just brings up so many emotions.

8 comments:

Tara Marie said...

I had an experience two years ago......at Emma Sage's dance class. Each week at class, one of the Mothers would really 'look' at Emma Sage before and after class. She would talk to me and ask me questions. About halfway into the dance year, she told me 'I had a little girl with Down syndrome who died'. My heart paused in great saddness......as sadly I have had dear friends who have lost their precious child with Down syndrome to heart complications and cancer. So I listened to her talk.....she continued. I look at your daughter and I realize that my doctors lied to me. My body filled with tingly goose-bumps, as I knew exactly where she was going with her story. She terminated her little girl with Down syndrome at 23 weeks gestation. Based on her doctors telling her that her little girl would never walk, talk, would be a burden. She had allowed herself to believe them and made her choice. A choice that seemed to pain her greatly, especially seeing Emma Sage...walk, talk, dance and express the amazing joy she seems to do everyday.

I would hate to have that burden weigh on my heart.

I was like you, I found 'Choosing Naia' to be a difficult read for the same reasons you did.

Michelle said...

I'm pretty sure we met Ashley Wolfe at the NDSC convention in Boston this past July. I mean, how many actresses w/Ds can there be who are named Ashley Wolfe?! :) She was in a movie called Mr Blue Sky. Kayla sat in her lap and was "writing" on paper with Ashley and we were all having a nice conversation. She was a very nice young lady to meet. I've read that book too, not too long after Kayla was born...but I don't remember that part in the book...guess it was too long ago! That does seem like a strange conversation to have though.

Hector and Jennifer Varanini Sanchez said...

Thank you so much for sharing your thoughts about this book. I think I'm going to pass on this one. Not sure I could take it.
I'm delighted to see a link and more info on Ashley. I loved the article you linked. She seems amazing and one can only hope that she has surrounded herself with people that appreciate her and that she appreciates as well.

SunflowerMom said...

Thanks for the review of this book. It is one I haven't read ir felt like it was one I wanted to read. I feel so blessed to not have known prenatally. I feel confident in what I think I would of done had I known, but still glad I didn't have to "chose."

Maybe I will give this a read someitme.

starrlife said...

It is a hard book to read. I think that as parents with DS children we have the opportunity to be more aware, more tuned in and sometimes that can be a burden, as you point out. However, I personally prefer that parents who do seriously consider what is best for their children both before and after birth. If they make mistakes- all parents do- and all we can do is try to limp along in this imperfect world we all live in. I work in the midst of the unspeakable and constantly repeating trauma of abuse and so I know there are lots of not so great things that 'typical' or all children live thru. For me DS, in itself- the extra chromosome- is no where near the worst and that has helped me accept quite a bit. Choosing Naia is inspiring because of the activity of their choice and the thouroughness of their considerations can be heplful to see, for me anyhow.

Signe said...

As a fellow traveler on this road, I eagerly read your blog. Like you, i've also wondered if other women I know have aborted a baby with Ds. I kind of think so. I considered it for awhile, too and am just so glad I didn't.
It's hard to know what other people think when they see your son or my daughter, but i know that when I see them I see bright, shiny children; full of promise.

Darla said...

It should be illegal to abort a child who can live a happy and fulfilling life. I totally agree that someone shouldn't get pity for aborting their child. It seems insane.

Have you ever heard of Michael Jurogue Johnson? He's an amazing artist who also has down syndrome.

http://users.psln.com/sharing/Michael/mainMichael.html

Chrystal said...

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" forums? If 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.