More Gray. And Maybe a Few Other Colors.

Even gray comes in different colors.

I haven't been able to get Ashley's story out of my head since I first heard about it last week. I keep mulling it over, thinking and rethinking it, wondering what I would have done in the same situation. Because of course, even though my son is similar to Ashley, I'm not in the same situation. No one is. Just as no other parent is facing exactly what we are facing with Ethan.

I'm fascinated by the hundreds of comments I've read on message boards and blogs. There's no denying that Ashley's story has resonated with people. Which, no matter how you feel about the story itself, is a good thing. People are discussing the care of disabled as a major headline. For a few minutes, parents of severely disabled children are the experts. They are being sought out for their opinions and experiences. To share their child's stories. People are acknowledging how lacking our nation's support system is, and demanding changes so no other parents have to turn to such drastic measures again.

And frankly, I think it's about damn time.

For the most part, the only people who think about the disabled are their parents and families. I'll be honest - until Ethan was born, I never once thought about how people manage to care for a disabled child. I honestly assumed that anyone who was disabled, especially children, automatically qualified for money from the government. That you got Social Security benefits, assistance for in-home nursing care, and free health insurance.

Yes. I was that ignorant.

The truth is, disabled children do not exist in the government's eyes until their 18th birthdays. Until that point, they are considered the parents' full responsibility. There are no additional benefits or support available unless their parents are extremely poor or until the child turns 18. And even then, there isn't much worth calling "support". Extremely limited funds. Few available daycares so parents can work full-time. Limited public facilities that make true mainstreaming possible. I don't think the average person realizes this until it hits them personally. But maybe, through some of these conversations, they're starting to learn now.

However, while I'm hopeful Ashley's story may effect awareness, I got a bit discouraged when I realized the only blogs I saw discussing this story were medical blogs and parents of special needs children. It has not spread much farther than that. (Granted, I do not read every blog that exists. And I did find this one entry at Wonderland - Finslippy's second home - but it seems to be in the minority.)

My family members heard of the story, but hadn't listened closely and weren't really sure what it was about. Coworkers never talked about it at all. When I brought it up in conversation one day, none of them had even heard of Ashley. They had however, heard and chatted about Howard Stern's recent raise, the blizzards in Denver, and the new plans for Iraq. This just reinforced my belief that Ashley will be a passing interest, taken over in a week or two by a new "headline grabber". Only time will tell.

In the meantime, I encourage all of you to read about this story. To think about it, and more importantly, talk about it. Even if you think you've made up your mind, you might want to seek out an opposing opinion, just to get another point of view. There are many good thoughts out there that I think are worth reading - even those I may disagree with. If you're looking for more insight, check these out:

• Carrie passed along this entry from Disability Studies, Temple U in the comments.
• Dream Mom has tackled this topic twice so far; Part I and Part II.
• Ben and Bennie added their two cents in a few different entries as well.
• The Gimp Parade has several great posts, plus many links to other discussions about Ashley.

As Dream Mom says: "You Could Be Next". What many people don't consider is that we all have the chance of becoming disabled one day, or having someone close to us become disabled. This topic does not just affect "those kids" or people who care for them. It affects every human being. We are all equally fragile.

***

I wanted to respond directly to some of the questions that were posed in my last entry:

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

Simple answer: "Yes". Real answer: "Yes. With lots of money."

Our bathroom is the size of a small closet. There is no way we could comfortably get a lift in there to use. Besides, the door is so narrow that we couldn't wheel him in or out of the room anyway, so he'd have to be manually moved from the lift back to his chair in the other room. We'd have to purchase the lift itself (relatively expensive) and do major renovations to make our tiny bathroom work. And none of this would be covered by insurance, because of course bathing is NOT a medical necessity. At least in the eyes of insurance companies.

Right now, our current system works, using the bath seat we purchased (out of pocket) last year. We know there will come a day when this won't work anymore, and we have a plan in place to deal with that. Frankly, we are outgrowing our current home in more ways than this, and we hope to move in the next few years. Even if we don't, we would plan to build a new bedroom/bathroom area to support Ethan and his needs down the road. At that date, we'd look into the lift vs. roll-in shower solutions.

But honestly, my point in Gray was not to focus on how difficult it is for us to bathe Ethan. Rather, it was to say that Ethan is losing more and more of things he enjoys as he gets larger. His mind is that of an infant, and as all infants do, he loves to be held, to be carried, and to splash freely in the bathtub. But as he grows and gets bigger, I watch him losing out on those things that he enjoys so much.

Yes, we can find alternate solutions. There are ways to adapt, and we employ some of them today. But it still makes me sad that he is losing these few pleasures he has. I honestly believe he was more able to enjoy life at the size he was two or three years ago than he is now. And it will only get harder. Our holding, carrying, (and Jete's rough-housing with him) has grown very limited as his size increased. One of the only ways we can communicate with him is through touch. While I can sit beside him, and hug him, and hold his hand, I still feel he is becoming more and more isolated from us.

I just wanted those who quickly called these parents selfish and evil to think about that for a moment. Think about your child as a baby, and think of never being able to hold them or dance with them or bounce them on your knee. Think about being forced to move them only from their bed to their stroller (or wheelchair) and back again. Think about how that makes your child feel to not have that additional contact. When I thought about my own situation, I could relate to some of their motivation, even if their actions were less relatable.

***

Liza asked - Are you considering seeking a similar course of treatment for Ethan?

No. We aren't.

Obviously, my situation is very different. First and foremost, Ethan is a boy. We will face different challenges as he goes through puberty than if he were a girl. If he were, I still don't think we would take such drastic measures. He's been through so many surgeries and medications, I can't imagine adding more to them right now.

That said, if he were a girl I would probably make decisions as issues came up. If "she" had problems or discomfort with menstruation, I would have no issues with using medications to handle or stop that. If "she" developed a large chest, I'd have to see how comfortable that was with the stroller and stander and look into possible reduction (which several adult women in my family have opted for). I would not be opposed to making my child more comfortable, in the least invasive methods possible.

I don't believe the surgeries Ashley had were that extreme. But if it was something posed for my child, I might have issues with the permanancy of them, and the fact that they were pursued with no real proof that they would help. Yet, there are many who believe these surgeries were not only wrong, they were "barbaric". Some of them would oppose even the lesser measures I might take. They don't believe you should intefere with a healthy body's "natural" processes. Personally, I believe that borders on an argument against any medical intervention.

Of course, I come from a different place. We put our three year old son through a 10 hour surgery, cutting and reforming his bones, slicing into the tendons in his groin and legs, trapping him in a full body cast for three months. All for something that might happen. His hips were displacing, and he might get arthritis in those joints someday. Then again, he might not. We knew that from the beginning. Someone - a purist, perhaps - might say that surgery was unnecessary. Barbaric, even. It's all a matter of perspective.

***

In a week of thinking, reading and analyzing this story, I'm still not sure exactly how I feel. Many things the parents did and said bothered me. The term "pillow angel" strikes an uncomfortable chord. I don't like the fact that the photos on their blog give privacy to everyone in the family except Ashley. And I find the arguments that they did this in part to prevent sexual assault weak, especially considering how many pedophiles are out there.

However, I do believe they love Ashley. I do believe they had her best interests at heart. And I do believe they had the full backing of medical and ethical experts. I do not believe they "mutilated" her as some are claiming, nor do I believe they are abusers or criminals as others say. And so, I find myself defending them.

But really, I feel as though I'm defending myself. I'm defending the right of a parent who knows and loves their child to be able to act in their best interests. After all, we are Ethan's voice. We are the only ones who know him at his core - his needs, what makes him happy, what causes him distress. It frightens me that someday, because a stranger disagrees with us, we may lose the right to decide what is best for him. Ethan's voice would be silenced.

***

Today is Ethan's birthday. He turned five. In five years, he has been through so much, and I'm sure the future holds much more. Sometimes I think we're up to the challenges, but other days I'm not so sure. I worry about the future. Will he stay healthy? Will we stay healthy? Will we continue to be able to care for him? Will our insurance woes get worse? Will he need more surgeries? Will he be in pain? Will he be happy?

We can't answer those questions. We can only do our best to make today the best it could be for Ethan. I think of Ashley's parents, and I can't help but believe they are trying to do the same for their daughter.

I wish there were more easy answers. I wish no one had to make decisions like this for their children. I wish things weren't so damn complicated. I wish the colors on the horizon always held more blue, and less gray.

Gray

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.

Maybe.

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.