Pillow Angel Parents Defend Choices

[AFPheonix]

And if they die unexpectedly? What then? She still would probably have to be institutionalized.

I do not fault her parents one bit. Sure, MAYBE technology will advance to where they can fix her, but I suspect that treatment for her condition will probably tend towards prevention rather than "curing" those who are already disabled.
It's the same argument that I disagree with strongly when it comes to assisted suicide for terminal patients. Sure, MAYBE some brainiac somewhere will come up with some wonder cure, but is it likely? No. Prevent suffering where we can when we can with the tools we have. Her parents did just that.

As for Depo, not everyone does well on that med. Should she be needlessly medicated when a simple surgery would do? Especially a surgery that will keep her from dealing with monthly cramps and discomfort? She's not going to understand why she'd be bleeding every 28 days, and I doubt she'd understand why she's getting an admittedly painful shot every 3 months. (thick oil, I know I was sore for several days after, and I move around more than she).
Sure, it's definitely convenient for her parents, but it's convenient for her too. She'll be more easily moved around, she'll have more opportunities to go out and visit the outside than she would if she was too large to shift.

[Pedersen]

Her life expectancy is not the same as an able-bodied person's. Ashley's parents are very likely to outlive her. While her disabilities are not fatal or terminal in any way by themselves, the average life expectancy of a person with a condition like hers is much shorter than the overall human average. One hopes that they would provide for her in their will should they pass before her, though.

And now who's playing the odds? "very likely to outlive" "average life expectancy" "overall human average"

These phrases indicate a willingness to play with the odds when it impacts somebody else's life (unless Ashley is your sister, cousin, or daughter, it very much is someone else's life you're gambling with. Oh, and the whole world would be quite shocked if you were to be Ashley herself, so that's why I didn't list her as a possibility for who you might be).

A few points of note: Care for someone who is totally disabled is a financial sink hole. People go bankrupt trying to do it. Not to say it can't be done, but Ashley's parents are very likely to have very little in the bank at any one time (more playing with the odds on my part, but I'll admit it, and stake my claim on "erring on the side of caution" along with it).

Ashley is, obviously, totally disabled. The odds you're playing rely on Ashley dying before her parents do. By erring on the side of caution (again), I state that there is every reason to expect her to outlive her parents. Yes, averages dictate she won't, but averages are often very far removed from the extremes they are averaging.

Put these two pieces together, and it's entirely possible that Ashley's parents want to provide for her in their will as an emergency measure, but are going to be unable to do so. Which puts us back in the bad spot:

Ashley has a very real chance of being institutionalized (yes, this is milder than my statement earlier, but that's a concession to the fact that there's also a real chance she dies before that point is reached).

I ask again: What then?

I'll answer one other question that I know is out there: Did her parents do the right thing? I don't know. And the part that bothers me the most is that I'm not sure I'd do anything different if I were them. Should I condemn them for doing this? And if so, would I have to condemn myself as well for admitting that I can understand why they would do it?

[Seshat]

Those who've made the point that 'pillow angel' sounds like they're dehumanising her: you're absolutely right. And it makes it sound creepy.


However, I'm with Pedersen. In a similar situation, I'd likely do the same thing. Or at least seriously consider it as one of my options.

Parents make tough choices for their children all the time. Some of those choices are irreversible. The parents of disabled children are more likely to have to make tough, irreversible decisions for their kids than the parents of fully able kids.

Society sometimes chooses to say that particular choices need to be made with the oversight of an independent party - a judge, a doctor, a social worker. I think in this case, we need that independent party.

Let the doctors decide which cases it might be appropriate to make this choice with. Then have someone - a doctor, a social worker, a nurse - compile the available options, and lay them out in front of the parents.

I think this is one of the situations where parents should decide, with the assistance of the medical community and their ethical advisor of choice.

However I think society is going to need to create clear guidelines about the conditions we'll allow it under. Whether this means we have a child welfare judge who assesses cases and permits/vetos the procedure, or the medical-ethics boards determine that it can only to be done to children who fail these tests, or what - I don't know. But I do know that it needs to be restricted to people who will benefit, not suffer, from the procedure.

[Boozy]

Those who've made the point that 'pillow angel' sounds like they're dehumanising her: you're absolutely right. And it makes it sound creepy.

I realize how it may sound, but dehumanizing her couldn't have been the intent. I can't believe that two parents who conceived, gave birth to, and cared for their daughter for ten years don't see her as a very real person. It seems a little pedantic to focus that much on this one statement.

[Lace Neil Singer]

Agreed. I'm trying to see this case in a neutral way, as I know that there's no way I could care for a disabled child. Even a fully abled child would be impossible, as stated in other threads. I'm sure these parents love their daughter very much, as evident by the fact that rather than put her in a home the second she was born; like a lot of people would have done, they chose to care for her at home.

Let's be blunt here. The chances of Ashley being cured ever are probably around one in a million. She is never going to go to school, get a job, get married, have kids. She'll need to be cared for for the rest of her life, however long or short that is. Therefore, I see nothing wrong with her parents' natural wish to keep their daughter at home with them for as long as possible. Seeing as Ashley has the mentality of a baby, she has no need for a reproductive system and won't understand why she's bleeding once a month, so why force her to keep it just on principle?

Also, as has been said before, a completely disabled adult would take huge amounts of care and lifting; the parents wouldn't be capable of lifting an adult the same or even bigger size than they are. Plus, again as had been said, the parents could die in a car accident tomorrow, or even become ill themselves and need respite care. It's sad, but there are a lot of abuse cases in care homes; I can't blame these people for wanting to ensure that no pervert can take advantage of their vulnerable daughter; or in a best case scenario, that Ashley is not left lying in bed for hours on end, developing bed sores and could even bear the brunt of a frustrated worker's temper.

Finally, none of us can ever know what this situation truly feels like, til we've been there ourselves so there is no point in condemning these parents when they've already proven how much they love their daughter by keeping her with them rather than just putting her in care the very moment they found out about her disabilities. That is what's best for them; by the way, I wouldn't condemn someone who chose to give up their child rather than care for them, as long as they did so for the child's sake and not just so they could say, go out on the piss all the time.

[DesignFox]

I realize how it may sound, but dehumanizing her couldn't have been the intent. I can't believe that two parents who conceived, gave birth to, and cared for their daughter for ten years don't see her as a very real person. It seems a little pedantic to focus that much on this one statement.

I agree. I think it's the parent's term of endearment.

Even if Ashley needs to be propped up on a pillow, or strapped to a wheelchair, she is still her parent's angel.

What parents don't have a pet name for their kids?

My neighbor's call their daughter "Bunny". When I was younger, Dad called me "Boo."

I don't see much of a difference there.

Shit, my one friend growing up- they used to call his brother "Little Monster." (he was a "terrible 2")

[Seshat]

Okay. My apologies. I can see that I may have been completely wrong, regarding the 'pillow angel' term. I'm not there, I'm not them, I don't know.

[RecoveringKinkoid]

I found the posts from the other caregivers to handicapped children to be very eye opening and heartbreaking.

I imagine these people will do anything in their power to see that their child is cared for. Right or wrong, clearly, these are desperate people doing what they feel they have to do.

I can't judge them, either.

[Seshat]

My blind friend's children are both disabled. One will be independent, eventually. The other never will be.

Caring for a disabled child is a never-ending sequence of heartbreaking choices.