Thursday, March 03, 2005
I’ve been terribly slack about updating this blog. So from now on, I will make an effort to update every work day, even if it’s only a line or two. Don’t expect anything on weekends – no internet at the house and I usually don’t even want to boot up the laptop, even to play Spider Solitaire (numbing heroin for the bored brain). (Let's be real, I need to be working on that book, right?)
I was troubled by an episode of CSI Las Vegas the other night. I’m not a huge fan, although I will watch it if Husband has it on. Marg Helgenberger’s character was working on the case of a child’s death. At first glance, it appeared that the father was negligent – left the baby sleeping in the car in 130+ degree heat and forgot about him. Just the kind of case that makes me fuming, hopping mad when it happens in real life. But the reality behind it was even worse, if you can imagine. Apparently, the couple had lost their first child to Tay-Sachs disease, and the new baby was showing symptoms of the same disorder. They couldn’t handle the slow, day-by-day disintegration and final loss of their child, so they decided that euthanasia was a better way to deal with the situation.
They didn’t wait for the test results to confirm the diagnosis from their pediatrician before they killed their baby. They gave the baby cough syrup to put him to sleep, then locked the car and walked away.
Turns out the baby had been exposed to pesticides from the mom’s gardening habit, and the symptoms of that exposure mimic Tay-Sachs. Probably would have cleared up on its own if Mom had washed her hands and stopped keeping the baby in the garden with her while she was working.
Several things bother me about this. I have a really hard time believing that any parent would kill their child to avoid their own pain and suffering while their child slowly deteriorates then dies. That’s what it was about – to spare themselves pain. It didn’t have anything to do with the baby’s suffering. The mom kept saying, “I can’t go through this again, I can’t do this again.” Ad nauseam. Never a word about how it would be for the child.
Last year you might remember me going on and on about Allie Scott, the baby who was diagnosed with AML. She was diagnosed at four months and passed away almost five months later. (Crap. Here come the waterworks and I can’t even cry because the Lab is full of people.) I still think about her a lot. I think about her mother and father and what they went through, and I think about that poor baby whose life was so difficult and painful, but who could still light up a room with her smile.
I remember how incredibly painful it was for them to decide to stop treatment for Allie and let her go (don't follow that link without a box of tissue.) And even if they had a second baby with AML, I believe they would still treasure every moment. I don’t think they would give up unless and until every option had been explored.
I’ve done some basic research and I know that Tay Sachs is a fatal degenerative disease of the nervous system, for which there is no cure at present. I can (unfortunately) imagine what it might be like to lose more of your child day by day and have no hope of ever seeing her smile or hearing her laugh again.
But I still can’t imagine giving up a single second of her existence, unless it was to spare her pain and suffering. I suppose what’s really troubling to me is that the writers of CSI seem to have really exploited the Tay Sachs condition primarily as a dramatic device, and didn’t do it with any kind of sensitivity or realism. If they had, maybe the program would have moved me. I mean, come on, this is me we’re talking about. I started watching Lost because I saw a pregnant woman. I cry at the end of Indiana Jones and Temple of Doom (a more-or-less pointless movie) now when all the children come back to their mothers. It doesn’t take much for me to get emotionally involved when there’s a child on the TV screen. But this just felt fake and manipulative to me. I wish I’d listened to Husband this time and not bothered watching.
A couple of folks have asked for Duckie updates. She’s doing great. She has a lingering cold with a lot of snot that doesn’t seem to want to go away, and some slight off-and-on discharge from her ears. (This will probably result in another visit to the not-so-personable Dr. Hawk.)
Yesterday I picked her up from day care earlier than usual, bracing myself for the normal screaming fit. She loves playing outside so much that trying to extract her from the slide can be something of a physical and emotional challenge. I’m glad that she’s so happy there – but those five minutes of fit-pitching can be kind of a drag.
When I opened the door to her room and peeked in, she saw me, grinned this big, toothy, drooling smile, and said, “Ma-mee!” She ran to me and threw her arms around my legs (the hugging craze has started and I love it). I didn’t even have to bribe her with Goldfish crackers to get her into the Jeep. She was in a great mood and we had a fairly calm, relaxing night together.
My friends in Columbia who are expecting their first child have scheduled their baby shower in April, and I’m looking forward to it. Maybe I’ll be the first to tell them all those things no one told me. Or maybe I’ll just hush up. If someone had told me all those things before I had Duckie, I probably wouldn’t have believed them anyway.
Shoo. Somebody probably told me all that stuff and I blocked it out.
Posted by andi at 11:19 AM