It was awful.
Okay, just kidding :p I know some of the girls are checking today to see what I have to say about how it went last night, so that's my "gotcha."
Seriously, the discussion went very well. The only thing I guess I regret is that the discussion was way more about me and my situation than about the book - but that was my doing. This morning all I keep thinking is "Boy, I just never did shut my trap last night, did I?" But maybe given the situation, it was bound to have been that way. It's not that I regret sharing too much or anything (obviously I'm a pretty open book), I just wonder if anyone else got sick of hearing/talking about me and my family last night.
I liked that some of the girls were not afraid to ask me thoughtful questions about Finn and about DS in general. It tells me that maybe reading Road Map to Holland and following my situation has eliminated some of the stigma and fear of DS . . . or maybe these women are just accepting and broad-minded to begin with.
I was a little surprised that most of them said they would still do prenatal testing if they had another pregnancy in their future. Not that I think anyone shouldn't, or that I've tried to dissuade anyone from having prenatal screenings done, I was just a little surprised. I'm not even sure why. Everyone who was there seemed to have been surprised about the 90% termination rate for prenatally diagnosed cases of DS, and most of them seemed surprised that a lot of those terminations are doctor-driven.
So I guess everybody learned some things, which is good. All in all, though, it really was just a nice way to spend an evening - sitting around eating and drinking and talking about life and connecting with other women.
I would love to get their take on last night. So here's an appeal to my book club friends: if you were here last night, post a comment here (or send me an email that I can post) telling me your thoughts about the discussion.
Oh, and here are a couple pictures. I wish I would have gotten a photo of the table spread with food, but I didn't :( Among other goodies I had out was a yummy artichoke-jalepeno dip, the recipe for which I got from Jennifer Graf Groneberg herself :)
9 comments:
As a new parent of a child with Down syndrome, I see that as part of my new mission: to bring awareness about Down syndrome. I am often surprised that most people do not have an accurate understanding of this syndrome. Their understanding is limited to what is seen on TV or heard on the news or read on the internet (which is mostly the bad). From my experience of talking with people, it does sadden people when they find out the abortion rate for these children which I can honestly say - WHAT A WASTE! However, it is inaccurate to say that most of them are doctor-driven. I realize that you may have a disdain for physicians but there are some good Docs out there that do a lot of good for people.
I thought the discussion was really good. I don't think you should regret the focus of the discussion at all; I think it was great to have a chance to talk about your blog along with Jennifer's book. I do think you should write a book or column. Your writing is so engaging and honest.
Oh, how I wished I could have been there...
I'm sure it was wonderful. I think it was bound to happen that you'd bring your own experiences to the discussion, and in this case, you were (probably) the only one there who could speak directly to the story of being a mom to a child with DS.
I hope YOU had fun...and I agree! You should write your own book, too!
xo
I always think I talk too much too. I bet your friends didn't think you did, though...you're the resident authority on the topic, after all. It would be weird if you DIDN'T talk a lot.
What I want to know is, how did you make food and get ready for company with six kids in the house? I am clearly doing something wrong here. :)
You got me!
I didn't get the impression that you have a disdain for all doctors, by the way. Maybe I'm wrong. Please correct me if I am.
I interpret "doctor-driven" as meaning that many physicians, midwives, or anyone associated with providing a Ds diagnosis, tend to be overly negative and pushy and recommend termination, oftentimes assuming that is the route that all parents will take.
That book club looks like a lot of fun to me. If JGG ever comes, I wanna come too.
Now I want dip.
I had a prenatal diagnosis and the delivery of the diagnosis wasn't bad. She did ask me if I wanted to discuss my "options", but as soon as I said that there were no options, she was clearly relieved. We are working in our area to reach out to as many OBBYN's etc. to educate them on delivering the diagnosis.
I am glad that I knew ahead of time. It gave us a chance to absorb the news and prepare ourselves and our family/friends. When our little Bean was born, it wasn't akward, it was joyous. There are pros and cons of prenatal testing. The Brownback bill passed this summer should help get updated information into the doctor's hands as well as make sure that a balanced approach is taken in the delivery of the news.
I think that it is great that you used this book for your book club. Hmmmmm..... I might have to follow suit.
I enjoyed the book discussion and thought your amount of contribution was perfect!
About doctors delivering the diagnosis and giving options, it was interesting to me the other night while watching the show Private Practice that they had a pregnant woman diagnosed with "St. George's? - (I am not sure I have the name right, but it was supposed to be significant as to the disabilities it would impose on the child - round the clock care for life supposedly...) and they had the script such that the doctors were very supportive of her choice to keep the pregnancy but she was told that "about 50% of parents choose to keep the child and 50% choose to terminate" - so the rate was much lower than Down syndrome...anyway, it seemed on the one hand good that mainstream tv was addressing pregnancy testing and option issues with docs being supportive of the mother's choice but also the rates of termination seemed to be low-balled, hmmm...
Finally, in reply to Jen's comment - YES Lisa is AMAZING - the house is always clean, the kids great, etc. I know I always feel like I must be doing something wrong when I can't keep my 2 kids under control and my house clean!
How interesting to have a book discussion on such a personal subject. I just picked up Roadmap to Holland this weekend, but haven't started it. Sigh. I need to get back in to book group. I miss adult conversation! (of course, then I'd need time to read and that's another story.....)
They may meet someone and be able to recommend the book. I think what you've done is awesome.
I think the more people realize the potential that children with down syndrome have, the less children who would be aborted. No one wants to embark on something frightening.
I think some people would still want a prenatal diagnosis to have time to mentally/physically prepare.
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