Unquiet Desperation

BBC NEWS | Americas | Treatment keeps girl child-sized: “Parents of a severely disabled girl in the US have revealed that they are keeping her child-sized in order to give her a better life.

The nine-year-old, named Ashley, has the mental ability of a three-month-old baby and cannot walk or talk.

Along with hormone doses to limit her growth, Ashley’s parents also opted for surgery to block breast growth and had her uterus and appendix removed.

They say the treatment will help to improve her quality of life.”

(Via BoingBoing.)

My reaction to reading this story was so mixed that I felt that I needed to share it with everyone.

Perhaps it is because I’m selfish, but each time Cathy has been pregnant, I have been terrified that the baby would have some form of severe birth defect. I wish I could say that the twisting in my gut when I see adult parents with a disabled child or adult child was purely sympathy, but I’ll admit there there is an element of horror in my reaction. Not at the kids themselves, but the situation…that these parents, who wanted nothing more in the world than a normal, healthy child received a child with serious issues that would shape the rest of their lives.

Perhaps I’m just selfish and shallow, but that scares the living hell out of me. The enormity of it. Knowing that your child will never mentally age. Will always be like this, frozen at this stage of development. In a way, it seems like there is no future there at all, only the repeat of the same day after day.

Admittedly, I have no idea what it is like. All I can see is what I construct in my head. So if any of you are parents of disabled children, please accept my apologies if I offend. And please, fell free to comment here…I’d appreciate an experienced perspective.

When I read this article, my first reaction was, “How dare they mess with this poor girl’s body? Isn’t it enough that she will always have the mental capacity of a three-month old?”

Then I thought about it a little more. And I thought about these parents’ point of view. As parents, we all want to do what is best for our kids. What would I do for my child given the situation?

Anything I could. Naturally.

I tracked down the family’s blog, where information have been posted about this. Before commenting, please head over and read it. However, here is one excerpt I found interesting:

A fundamental and universal misconception about the treatment is that it is intended to convenience the caregiver; rather, the central purpose is to improve Ashley’s quality of life. Ashley’s biggest challenges are discomfort and boredom; all other considerations in this discussion take a back seat to these central challenges. The “Ashley Treatment” goes right to the heart of these challenges and we strongly believe that it will mitigate them in a significant way and provide Ashley with lifelong benefits.

Unlike what most people thought, the decision to pursue the “Ashley Treatment” was not a difficult one. Ashley will be a lot more physically comfortable free of menstrual cramps, free of the discomfort associated with large and fully-developed breasts, and with a smaller, lighter body that is better suited to constant lying down and is easier to be moved around.

Ashley’s smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc. Typically, when awake, babies are in the same room as other family members, the sights and sounds of family life engaging the baby’s attention, entertaining the baby. Likewise, Ashley has all of a baby’s needs, including being entertained and engaged, and she calms at the sounds of family voices. Furthermore, given Ashley’s mental age a nine and a half year old body is more appropriate and more dignified than a fully grown female body.

I am still thinking all of this over, but my preliminary thought is that the parents are right to do this. In light of the situation, this might really be the best thing for this poor girl. If my child was in a similar situation, and this could truly help her quality of life, I believe I would probably do the same thing.

I am curious…what do you readers think about it?