[tri-wings] Re: Barb

Demi,
I have suggested that when parents decide that they want to give their unborn 
baby a chance.....given the situation once they are born, that it might help if 
it is recommended that such parents spend some time volunteering for respite 
care or spend time at a home for kids with development issues. This would help 
to convince the staff that the parents are fully cognizant of the challenges 
that lay ahead and that they are making a fully informed decision. 

There was no interest in this suggestion.

I have heard of stories where people want life saving treatment and then they 
stop visiting the baby over time. Let's face it, it is not easy. It is 
demanding and consuming but the rewards are very great. Most people don't 
understand.

Have you ever heard of Jean Vanier? He developed homes for people with  serious 
developmental delays. They are all over the world. Jean Vanier believes that 
the God lives within these people in a special way and those who take the time 
to know and love them see that. Once I met a very religious professor and he 
told me that he used to go to a home for an hour once or twice a week and he 
would just hold the hand for that hour of a man who lay out on a stretcher. He 
couldn't do much.  When he told me that, I took a breath with the plan to say 
something like, "You are very kind to do that" but before I got it out, he 
said, "he did so much for me." I realized that I wasn't getting it. It is not 
so much what we do for these special lives, it is what they do for us when we 
love and care for them. 

What a terrible world it would be when others make decisions for us about who 
is worthy of living and who is not. 

On the one hand, what happened to Annie is neither here nor there. We do not 
know if she would still be alive and I am sure that many people (especially at 
the hospital) think we are making a big deal about nothing. On the other hand, 
the covert removal of our rights, and the denial of our ability to provide 
input or even be aware of our daughter's plan of treatment is very significant 
in terms of the implications. 

I often wonder what it would be like back in the old days if a mother make a 
big deal about her child being sterilized without consent because she had 
developmental disabilities. Imagine if that mother said, "Do you know where 
this lack of consent and unilateral judgment could lead? On the one hand, 
people would have looked at her daughter and wondered what kind of a mother she 
would make,and dismissed the mother's concerns but on the other hand, in the 
bigger picture, we know that a mother who fought the issue would have been 
completely correct.

Funny how we have such strict sterilization laws and yet eugenics continues 
silently thru genetic testing. Who are we fooling?

I do believe that policies and protocols developed on the basis of  genetic 
test results only are completely discriminatory. It is no different than having 
such plans related to a person's age. The fact is that some 85 year olds are 
dead and some are running marathons. Everyone is unique 
and every family makes the decisions that are right for them.

Barb




> 
>  
> 

_________________________________________________________________


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

Other related posts: