I don’t see any reason here not to trust the parents. They are in a position absolutely none of us would want to be in, and if the decision is tough for outsiders, I can only imagine how long and hard they thought about it. There doesn’t seem any reason not to trust them there, as they seem to be devoted to the child. It’s an all too common fear from what I hear amongst parents of children who will never be able to care for themselves - what happens when the parent gets too old to provide that care.
These parents haven’t run away from their child. They are attempting to ensure that for the longest possible time they can give her the best care they can. It seems that there is no downside for the girl here.
The initial reaction to this story, for me, was revulsion to the idea of interrupting the growth curve for this child but upon further thought, I agree that her parents’ choices are in their daughter’s best interests. No one would want more for their daughter to develop as other girls grow and develop than they, but that will not happen. They have taken the active steps to insure her safety, health and comfort as far as they can.
It drooled, shat and pissed in an oversize pram until about the age of 30, when it mercifully died. It was nominally a she, and called Patty, but I doubt it knew that.
It also managed to destroy the lives of its ‘loving’ parents, who finally could not cope and gave it up to an ‘institution’ where I suspect that a sensible nurse applied the pillow treatment.
If they had destroyed that encephelate as soon as its condition was obvious, then two lives would not have been blighted.
I would cull all defective children, if they are non sentient then they are not humans, and if they are sentient then it is cruel to keep them alive.
And yes, I should have been culled - being a genetic defect is not pleasant - and it is a damn site worse when you look like an Alpha male.
I know. I’m still thinking about this and see both sides of the ethical argument, and yet I still am gridlocked and can’t find resolution in either one. sigh
I’m leaning towards being grateful that I have never had to deal with caring for a disabled child. I can’t imagine the stress and heartache. It’s hard enough caring for several completely healthy, able-bodied children. I can’t imagine having to make choices like the ones her parents are making.
Still - it’s eating at me and no amount of my favorite heavy metal turned up way loud in the car is making it go away.
WTF!!! :mad: Yes, caring for a profoundly mentally disabled kid is hard…but SHEESH!!! Most profoundly mentally disabled kids can interact and have something resembeling a life. They are just at infant level in interaction.
Yes, there are some extremely profoundly affected kids,(kids who are in a PVS) but most of those probaly either are end stage victims of progressive conditions like that disease from Lorenzo’s Oil,(adrenoleukodystrophy) or they were in severe accidents.
Very few profoundly mentally affected kids who were born that way. are PVS.
As a matter of fact, most MR folks are MILDLY mr. Like they are more slow learners. I mean SHEESH…MR functioning is up to sixth grade academic functioning…that’s pretty high! Besides, they tend not to act as stupid as a lot of other supposedly “normal IQ” people.
Seriously…you obviously don’t have a lot of experiance with disabled people…or the variety in syndromes and the wide range of functioning.
Yes, there’re severe cases…but just b/c a person has a severe disabilty or another kind of disabilty, doesn’t mean that they aren’t human or they don’t have a life worth living!
As for support…I would a) destigmatize the insistution. Some people are just so medically fragile and MR, (and a lot of the profoundly MR folks ARE very medically fragile) that living at a home, where trained people can work with them, can help decrease the stress of having a profoundly disabled person.
I mean taking care of a profoundly disabled kid can be a job on its OWN.
The parents should have the option of other people taking care of their kids!
Then I thought, why are they keeping her alive at all? For their pleasure or hers? Couldn’t be hers, she’s a vegetable.
Why don’t they just cut off her limbs, if she can’t use them? It would make her easier to carry (one of the reasons given for keeping her weight down). She would eat less, saving food costs.
It starts getting pretty morbid once you start down this slippery-slope road.
I know I’ll be blasted for saying this, but a life as a perpetual infant is not one worth living. Sure, such a child may respond to stimuli but so does a rat, and at least rats are able to feed themselves.
My mom’s cousin has a daughter who is severely brain-damaged because doctors didn’t realize that she had hydrocephalus and spina bifida until it was much too late. He and his wife won the malpractice suit for something like 3 million, but didn’t want to go after the doctor’s personal assets, so this has resulted in them caring for their daughter themselves give how high her medical costs are. They have been doing so for the past twenty-five years.
She doesn’t walk, and my mom’s cousin insists on carrying her when she needs to be moved. He’s had three hernia operations, and has a bad back. I worry about him since he’s in his late forties and this is bound to take even more of a toll on his health he ages.
As damaged as she is, she loves her daddy. All it takes to get her face to light up is him speaking to her. He’s one of the few people who can coax her into talking. She’s far happier than I believe she would be had she been instutionalized, and I worry about her outliving him, since that is probably what would become of her.
These things in mind, I don’t feel as though the parents have done the wrong thing. I wish caring for her was easier on my relatives. I also have to wonder if more parents in this situation would keep their children at home like the cousin has if they had the options that that girl’s parents had.
How come? And some profoundly MR kids are able to feed themselves. Not all are, eternal three month old babies. I have to say, that those kids tend to be VERY medically fragile. They are also at huge risk for dying early. I don’t beleive in euthansania, (except for VERY extreme cases) but at the same time…it’s hard to say what should be done. No intensive medical care? Just pallatative care?
So hard…
The process of growing up inherently involves eliminating certain possible activities that the parents can do with the child. Though this particular case involved a severely disabled child, it sets a dangerous precedent. After all, who doesn’t believe that childhood is a happier overall state than adulthood? Being human means abandoning the state of childhood innocence at a certain age and passing into adulthood.
But the “process of growing up” is much more than simple physical change. I thought the issue here was that this child will never grow up. She will always be an infant, but the question is what happens to her body.
In response to the media activity on the story, Ashley’s website was updated as of today, so I’ll link to it again. The salient points are decribed in precise detail.
The family has thought this out quite well, consulted with expert doctors, and with a medical ethics committee before starting this treatment. They have done their best to give their daughter the best life possible under the awful constraints of her disability. I’m amazed by their devotion and strength in being able to clearly do a controversial procedure to benefit their daughter in getting adequate care. Again, read the whole linked article; they’ve thought it out very clearly, with best interests of their daughter.
The term “Pillow Angel” was a bit much for me , too, but when I looked at the photos on the website, I tossed that judgement out. Their daughter was born to them, with such a bad hand dealt, and they are loving and caring for her in more intricate ways than most of us have to deal with. The photos show a sweet-faced child, and they’ve done the best to stand by that sweet face, though most people would have given up. That sort of commitment and unconditional love is so rare. I don’t even know how to truly glimpse into their world and it’s duties, but the small part I understand is what separates “a freakshow” from an whole-hearted attempt at giving someone the best chance possible.
whoah, hold your horses. YOU (and all of us) were born less than a rat. It took years of diapers and drool to make you able to type on a computer. Yeah, I know you are going to say that yours was a temporary “normal” condition but now we are talking matters of degree and not of form and those folks have as much right as us to draw the line of what is acceptable where they see it fit.
I have a suspicion that you, like I, were rescued from childhood.
My uncle who was 14 years older than my father, and his astute wife, abducted me at the age of 13, and taught me tolerance and also intolerance. It had some spectacular effects on education.
I was not the first, and I give them credit for rescuing detritis and turning it into pretty effective materiel.
Philip Larkin - This Be The Verse
They fuck you up, your mum and dad.
They may not mean to, but they do.
They fill you with the faults they had
And add some extra, just for you.
But they were fucked up in their turn
By fools in old-style hats and coats,
Who half the time were soppy-stern
And half at one another’s throats.
Man hands on misery to man.
It deepens like a coastal shelf.
Get out as early as you can,
And don’t have any kids yourself.
But, I believe that one has a duty to de-fuck others.
It took me a long time to accept the fact that its okay to terminate the life of a fetus. I’ll be damned if I let this go any further and accept that it is okay to terminate the life of a 3 month old baby. Sure, its unusual for someone to be permanently disabled to the extent that they’ll be a permanent infant, but if you think that is a problem for the baby and your opinion has merit, then I would suggest that all parents are cruel to put a human being through infancy.
This child is 3 months old mentally. To the best of my recollection you can have a mutually satisfying relationship with a 3 month old infant. To put a more positive spin on the value of maintaining her life, there will be no probability at all that she will succumb to anti-social behaviour.
Not being smart is not a crime. Not being intelligent enough to participate in this message board is not a crime.
I applaud these parents. I’m sure they will have a mutually satisfying relationship with their baby.
