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Re: Suitable topics for this forum / babies with down syndrome part 2

From: Judi (anonymous@obgyn.net)
Thu, 31 Oct 2002 10:39:58 -0600 (CST)

Hi Renee-- I didn't mean to be so aberbic in my posts, I just get touchy about this. I don't think there IS a way to convince people to think things through any more than they already are. Before having my son, I would have been the first person to tell anyone that I was not ready for a child with a serious disease. I'm pretty sure I would have chosen to terminate the pregnancy, with the full support of the docs and all family. What I mean is that only the experience of having the disabled or sick child is what can change people's minds-- for better or worse. I'm sure you meet a lot of families who rise to the challenge, but how many more don't? I think this is the hidden face of families living with disabilities, and one of the things that families are sooo reluctant to talk about-- that it's a blessing AND a curse. I can't bear to see having a disabled child candy-coated, because it just isn't the reality. The reality is that there are times you are about to crumble and other times when you feel so lucky to have this wonderful, non-cookie cutter child. But you can't force that on anyone or expect them to understand if they haven't had a personal experience with disabled or sick kids (which most people do not).

I am glad you're advocating for and working with disabled children, but doing it with pregnant women who are facing amnio testing/results or other tests that will change the course of their lives regardless of the results just adds to the guilt and stress already present. I don't think any woman on here, asking questions, is taking the decision lightly.

As for the timing of my son's disease onset, I feel lucky to have had 6 months of "normal". Some people never have that at all. Judi



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