During the campaign Ms. Palin sounded as though she deserved brownie points for herself like she had the corner on having a challenged child, there are millions of parents who have these wonderful gifts from God who work tirelessly with their children so they can have as much advantage as the average child, I never wanted applause or public aknowledgement most parents don’t. I never paraded my children around like it was all about me.

P.S. I was deeply saddened by the loss of Eunice Shriver a wonderful advocate for people who are challenged she will be missed by all whose lives she touched.

Please. This woman is a clown, at some point those of us who feel like we can relate with her because we both know the struggles that accompany raising a child with Down syndrome (the S isn’t capitalized Mrs. Palin, at least get that right before we start nominating you as protector of our children) will realize that it doesn’t necessarily translate to good political decision and knowledge.

Our experience with the “medical profession” in terms of how a multitude of doctors and nurses have treated our child has been overwhelmingly positive. Not once has someone in the medical profession even remotely suggested they felt pity for us or would have done things differently themselves, and we’ve seen a pretty diverse group of individuals in seeking treatment.

For info on clinics that specialize in assisting individuals with Down syndrome see :

http://www.ds-health.com/clinics.htm

I don’t disagree that there are many docs who give short shrift to a pregnancy with an expected “less than perfect” outcome. There are also, however, defects which can be treated prenatally, and I’m not for stopping the ability of science to deal with that. In fact, I’m all for it. I’m hoping for a day when early detection, for example, of spina bifida comes with hope that it can be treated before the child emerges from the womb with severe disabilities. It would have been great if my daughter’s heart and UT anomalies could have been helped much much earlier. (Indeed, my own mother was sent home from the hospital empty handed when it was believed that I had suffered anoxia at birth and would never develop normally – but that was nearly sixty years ago, and an ultrasound would have shown my transverse presentation, the position of the umbilicus, etc. and called for a C-section before the thirty some hours she lay in excruciating but pointless labor, and the 96-stitch episiotomy that left her cervix bisected.)

Sen. Kennedy’s efforts (with Brownback) to encourage a more honest and complete discussions about the prospect for children with DS gives me hope.

But Palin’s characterization of this bill is just more talking point hysteria. Here’s what one writer said this morning about “death panels” which certainly rang true in my own experience with end of life care:

“You have no idea what it’s like to be called into a sterile conference room with a hospital administrator you’ve never met before and be told that your mother’s insurance policy will only pay for 30 days in ICU. You can’t imagine what it’s like to be advised that you need to “make some decisions,” like whether your mother should be released “HTD” which is hospital parlance for “home to die,” or if you want to pay out of pocket to keep her in the ICU another week. And when you ask how much that would cost you are given a number so impossibly large that you realize there really are no decisions to make. The decision has been made for you. “Living will” or no, it doesn’t matter. The bank account and the insurance policy have trumped any legal document.

If this isn’t a “death panel” I don’t know what is. ”

http://sobeale.blogspot.com/2009/08/dont-talk-to-me-about-death-panels.html

If your experience is different, I’d love to hear about it.