Tuesday, January 09, 2007

The Ashley Treatment

When I first heard this story, I believe the terminology I used was something like "What Fucking Idiots" Well, I'm here to say I was wrong. And please let me explain why.

I'm sure by now you've heard about this article about the little girl in Washington who's parents elected for her to have surgery to stunt her growth because she is severely brain damaged. Danielle had mentioned it to me briefly and we talked about it. My initial comment to Danielle was, "How horrible. How disgusting. But then again, a medical professional would not do something like this without validation." She agreed.

My initial reaction comes from recently learning that not too long ago (like in the 1920s) mentally retarded children were automatically sterilized by the government so that they could not reproduce and thus "create more mentally retarded children" to burden social services funded by our tax dollars. I'm not sure of the exact dates, but eventually someone fought the system and won. And after that, the government no longer had a say on what could and could not be done to an individual with a disability. They are to be treated as equals, and thus, their bodies and their reproductive organs are their own, regardless of their mental capacity. I learned all this at an Epilepsy Support Group meeting one night while listening to an attorney talk about disability discrimination. I was appalled to learn what was "automatically" done just a few years ago. When hearing about Ashley, the little girl in Washington, my immediate thought was about how this used to be something forced on someone with special needs and mental incapacities. And I do feel strongly, that my Jenelle's body is her own, and not mine to test, toy or play with.

I then found Ashley's parents' blog. And I read their story. And now I can admit that my gut reaction was wrong. I truly believe these parents have researched and studied their options. I truly agree that they are doing this not to decrease their burden as care givers, but to prolong the better quality of life for Ashley. I commend the bravery for making such rash decisions, and for sharing it with the world.

As you know, when Jenelle was 18 months, we took her to UCLA to have her tested to see if she was a candidate for brain surgery to stop her seizures. If she could have it, the surgery would have removed half her brain. Friends and family were aghast at the choice we had to make. Seriously, it is not an easy decision to decide to remove half your child's brain in hopes of giving them a normal, seizure free life. The first time I read about it, I wanted to vomit. But yet, when Jenelle's seizures remained uncontrolled, and we were facing the real possibility that any prolonged seizure could kill her, we were willing to do and try anything. Including removing half her brain. The decision was ultimately made for us when Jenelle was found to not be a candidate. Still, I wonder what people would think.

Jenelle and Ashley are very different. Jenelle is mobile, sitting up, and responsive. Ashley is bedridden and has shown little improvement. I dread the day I will no longer be able to lift Jenelle - yet I know that day is fast approaching. Jenelle is already 40 inches long, and 36 pounds. Height runs on both sides of the family, and I am the shortest woman in my family at 5'8" - most women in my family are 5'10" and 3 are over 6 feet tall. The signs are there that Jenelle will be tall someday. Should we give her the "Ashley Treatment?" I don't know, and I hope we don't. I've often felt it would be convenient to keep Jenelle on the pill when the time comes so we could try to avoid her periods. I've been told it is difficult to get these prescribed for mentally retarded children. At first I thought, "She is my child, why can't I?" but then I realized it was and is her body. As far as removing the uterus - I've read many medical reports showing the good things hormones and estrogen can do for the body. I honesty just don't know!

Although we walk in their shoes - our circumstances are different. I now realize it is not for me to judge any parent's decision about their child. We all do what's best and we all hope for the best. I just thought you should know initially I was wrong, and why I reacted the way I did.


Ivey Elizabeth Sirmans said...

This once again confirms that being a parent is the hardest job granted. Most decisions are thrown up in the air as to whether they are the right or wrong choices, time usually tells. However, most decisions are a little more arbitrary than yours, Ashley's parents or ours.

I can't imagine making the decision to have the brain surgery, but it took much courage to make it. I commend you. I only hope that I have a cheerleader like you on the sidelines when our day comes for those decisions.

Ben & Bennie said...

It was so good of you to visit our blog! Please come back soon. I plan on checking in on you and the beautiful Jenelle quite often. BTW, we've added y'all to our "Blog Buddies!"

Mete said...

Thank you so much for this post, especially admitting that your first reaction was very different from your opinion after reading the parents' story. It's natural to have a strong reaction to this story, but I believe there are so many other layers to consider before condemnning anyone. Parenting, especially special needs parenting, is such a tricky, difficult experience. Most of us are just trying to do the best we can.

I'm glad to hear Jenelle is doing so well, and I hope things continue in a happy path through 2007!