Thursday, January 04, 2007


I don't know how I feel about this. (More info here.) I really don't.

You'd think there would be a simple response. "It's wrong!" "It's right!" But it is not that simple. Nothing about this kind of life is simple.

There are those that say it's ethically questionable. I can totally see that. Putting a child through unnecessary surgery? Messing with a body's right to grow up? Forcing them to be a "child" forever, even into adulthood? It's unnatural. In fact, it's immoral.


Ethan is already 50 pounds at practically-five-years-old. A SOLID, dead weight, 50 pounds. I can barely lift him now, and Jete has to do all major maneuvering. I can't give him a bath because I can't safely get him in and out of the tub.

Soon, he won't be able to have baths anymore. He loves baths. He loves being submerged in the warm water. Nothing relaxes his tight muscles like a warm bath. But a 75 pound (wet) child can not be safely transported in and out of a tub. He'll need to move to sponge baths. To roll-in showers where he is cleaned but not bathed. Showers that do not give him the feeling of floating; of being free.

And I'm pretty sure that, in a few months, I won't be able to hold him anymore.

Ethan is my baby. He is practically-five-years-old, but developmentally, he is a baby. He will never be more than six months old. He loves to be held. I love holding him. And I know I won't be able to do that ever again. I can sit beside him, or lay with him on his bed, but never again hold him in my lap and just cuddle him. He'll be so difficult to move that he'll mainly spend all of his time in his wheelchair or on his bed, physically separate from the rest of us.

Now. Tell me again what's moral and what's not. I dare you to.

Updated to add: This was featured last night on Nancy Grace. I'm normally irritated by this show in general, but I could barely sleep after watching it, I was so angry. No impartial information here; we all know what we're SUPPOSED to think after watching this show. It must be nice to be so perfect and self-righteous.


Liza said...

Wow. That is something I had never, ever considered. Thank you for the learnin'. Are you considering seeking a similar course of treatment for Ethan? My high-maintenance one IS a baby, and is cognitively intact, but if they were frozen in development age-time RIGHT NOW in the fifteen-month-old MOMMY MOMMY MOMMY MINE MOMMY MINE and yanking on the mic-key button during tantrums...if the child got to be the size of my five-year-old and was still doing that, I don't know how I'd manage. People who have never considered such things have no business saying what parents of special needs children should or shouldn't do in order to keep options open to their children that could close.

Terrible Palsy said...

I like you think that it is in the grey zone. I'm not sure whether I would make the same decisions in the same situation. Thankfully, I will never know. But what I do know is that I have no right to judge the parents. they obviously love their daughter very much.

Kelly said...

You beat me to this one....

Chris read me the article on it last night, and we BOTH felt like the negative spin on it was totally uncalled for. They were acting like people with ADD kids would do the same thing! That it would cause a "slippery slope".

I applaud the doctor who looked at this individual case and made the decision to HELP this family. Can I say I would do it if Michaela were SEVERELY disabled (as opposed to moderately on her bad days).....


We already know that we're going to put her on the pill to keep her from having her period. Our doctors support this decision. A child of her mental capacity does not need to be dealing with that (and neither do we!).

But to alter her permanently is a bigger deal than just medicating her. I'm not positive what I would do. Yet, I think it selfish and self-righteous of people OUT of the situation to demonize these parents for trying to keep their situation manageable. The little girl will never know it, never need it, and will only benefit from NOT having to be institutionalized when she's too big to care for.

It's an individual MEDICAL decision for an individual family. And it makes me mad that the media is negative about it.

Stapeliad said...

I don't think that anybody who isn't taking care of the Pillow Angels has any business commenting on what is right for them or not.

Reading Ashley's situation, I applaud the parents for doing what they need to do in order to preserve the quality of life for *everyone* involved. I don't see anything unethical or even questionable about her treatment.

Carrie said...

I was hoping you'd write about this. It really bothered me to read the story, mostly I think because it is so bad that anyone would have to be in the position to make these decisions. I'm not sure I agree with what they did, but I think I can understand it.

I found a brief post by another parent of a severely disabled child here who sees it differently.

Anonymous said...

Thank you for sharing your perspective. It's very powerful.


xrotorgirl said...

I really enjoyed your post. As a parent of a S&P kid, this issue has really resonated with me. I found myself pulled in an ongoing discussion pertaining to this issue here:
I took the liberty of posting your link. It just amazes me how opinionated people can be when they don't have a clue what they are talking about! Anyway, it's interesting reading.

Becca said...

Mete - can you not get some bathtime-related assistive tech. for Ethan?

My mate P, 80lbs with Ethan-type impairments, used a Bea cradle lift (low-tech and not too expensive) until recently and now has an uppy-downy bath which she uses in conjunction with a hoist.

I use either a bath with a lifting seat or a roll-in shower with a supportive chair in it - the latter, for preference, ever since a close friend referred to a warm bath as 'bacteria soup'. Nice.

Ben & Bennie said...

Wow! 3 new blog buddies in 24 hours! I'll have much more reading to do.

Mete, you already know my position which is same as yours. My son is about 40 pounds (7 years) and both me and my wife already have back problems.

It would've been nice to have Nancy Hick Grace to have some parents of exceptional kids on her panel. Instead she pretty much crucified Ashley's folks along with her already decisive panel of "experts."

Thanks for stopping by our blog. I'll be adding your site to our favorites and will return often. I'm anxious to read about your family's jouney.

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