[lelly]

Have you guys heard about <a href="http://www.cnn.com/2008/HEALTH/conditions/03/12/pillow.angel/index.html?iref=hpmostpop" target="_blank">this</a> story?<br><br>
I am sure that caring for a child with significant disabilities is an enormous challenge, and I feel much compassion for families in this position. But I am shocked that this kind of solution is not only offered but taken. . .under any circumstances.<br><br>
What do you think of this?

 

[QuixoticNotions]

I read about that quite a while ago-- maybe when the decision first got press?? Regardless, I'm not positive I'm entirely against it... it seems like it might make life easier on the kid, not just the caregivers. Then, I don't know all the information on this.. that's just my gut reaction.

 

[sierra]

Its a very hard call to make. I dont think that you can fully understand what it takes to care for a disabled person until you do it.<br><br>
I have to wonder if the choice was, to either send her away and let someone else care for her because her parents would be physically unable to, or to have that procedure done, and keep her at home, with her family, who love her and will give her much better care then anyone else will.<br><br>
That said, there are other options out there. Lots of agencies do provide in home services just for this situation.<br><br>
I cant judge those parents for the choice they made.<br><br>
It would be nice if bsmiz would check in with her thoughts on it.

 

[refinnej10]

Way back a year or so ago this was discussed. At the time the parents had a website in which they discussed why they did what they did. I recall that I came away believing that what they were doing was what they thought was the right thing for their daughter (and they did anguish over the decision). And I also read nothing but love and compassion coming from them about their daughter.<br><br>
I think it's an overall crappy situation. You have a daughter who is profoundly handicapped/brain damaged and will never get any better. She won't understand why she's having cramps, she won't understand what a period even is. She'll never know what her boobs are - whether they grow or not. So... what harm was done to her, really? On the other hand, where do you draw the line? Do you chop of her legs since she'll never walk?

 

[clb]

I don't think we can judge til we walk a mile in their shoes.<br><br><br>
Parenting isn't the same for a child with a lifelong disability and the inability to self-care on any real level. I don't know if this was the right decision, but I'm certain it wasn't the wrong one.

 

[ym]

Ashley's parents didn't get to vote on their daughter's condition when she was born, but they seem to have embraced their daughter and are dedicated to caring for her. With the mental capacity of a 6 month old, I respect the choices they made for Ashley; a hysterectomy, no breasts and a small frame for life. They will have to care for their daughter for the rest of their lives; carrying her, holding her, feeding her, etc. Keeping her small will make it much easier for them to care for her for much more of their own lives, but it still wont be easy. Eliminating menstrual cycles and all of the complications that come with it seems merciful to me.

 

[Mrtambalynman]

I remember reading about this a while back. I too have difficulty second guessing thier choice.

 

[sierra]

I honestly think if I was faced with the same situation, I would very likely do the same thing.<br><br>
(I have been very involved with the other side of this situation, so know what the options and services are like. )

 

[bikegirl72]

There was a child like this on Law and Order SVU in the episode on the stolen and destroyed eggs in a fertility clinic. In the episode the parents of the child decided to have their daughter's eggs havested so the mother could carry her grandchildren if she wanted to.<br><br>
IDK I don't know what it's like to take care of a disabled person but I'm sure this was a decision that the parents felt would give their daughter the best quality of life.

 

[clb]

I further think anyone who criticizes their methods had better be signing up for relief caretaker duty and meal-bringing. Seriously.

 

[therambler]

didn't the Nazis do this kind of thing.

 

[corrade]

I don't see how the Parents could do otherwise in their role. Their child would never have much self-determination. They totally did something awesome for their awesome kid. There's a line to be drawn here somewhere by somebody though, for somebody else.

 

[diablita]

They did all sorts of things. They tied pregnant women's ankles together during the birthing process to see what would happen and ... actually I'm not even able to type some other examples of the "tests" they performed on their captors.<br><br>
You can just read a little bit about the atrocities that were carried out <a href="http://en.wikipedia.org/wiki/Nazi_human_experimentation" target="_blank">here</a> .<br><br>
I cannot judge these parents, and certainly don't envy them. I wouldn't equate Mengele's experiments to their decision at all.

 

[sierra]

clb,,, that would be a great start... but let me clarify a bit.<br><br>
Relief caretaker and occasional meal-bringing wouldnt work. Its needs to be fulltime, live in, housekeeper and caretaker, with only about 4 hours off a month. THEN they MIGHT have a clue about what its like. Although, they wouldnt have the emotional side of it, so it would still be much easier.<br><br>
Off my soapbox now.

 

[sierra]

I didnt mean to kill it with my strong opinions. <img alt="sad.gif" src="http://files.kickrunners.com/smilies/sad.gif">

 

[diablita]

I don't think you did, sierra. It sounds like you have a bit of knowledge here. <img alt="sad.gif" src="http://files.kickrunners.com/smilies/sad.gif">

 

[sierra]

Yes, I do, but its not sad. Worked in the residential arm of the DD field for 23 years.<br><br>
So yeah, I have some strong opinions about it all. <img alt="smile.gif" src="http://files.kickrunners.com/smilies/smile.gif">

 

[clb]

<br>
No no, you're quite right. I just got tired of being the mean ol' bitch. Glad you picked up the slack for me. <img alt="biggrin.gif" src="http://files.kickrunners.com/smilies/biggrin.gif">

 

[sierra]

Glad to be of service! <img alt="biggrin.gif" src="http://files.kickrunners.com/smilies/biggrin.gif">

 

[merigayle]

I believe the parents made the choice they thought was in their child's best interest. I did catch the follow up story yesterday online. I believe the original procedures took place over 4 years ago? I was actually quite shocked at the outcome of the publicity of this case. The hospital admitted wrongdoing and the doctor who preformed the hysterectomy commited suicide, according to the article i read. everything i have read about the case, i walk away thinking these parents love their child and are incredible care takers and want to be her caretaker for her entire life. Its sad that these parents get so much flack when other parents can just drop their kids off at a home and forget about them.