> I have read with interest Joanne's and Yvonne's stories, and I hear the
anguish in
> your words when you describe the medical problems of your babies.  As an
adult
> with C.P., however, I can speak that life, even amidst the worst of
things,  has
> meaning. and I think before parents think about having a DNR on their
baby, they
> talk candidly to an adult with c.p.


MIcheal, Thanks for your thoughtful reply. This list has given me many
insights into the adult world of living wiht CP. At the time of Alex's
cardiac arrest I cared more that he lived than what disabilities he could
have. It was really selfishness on my part more than thinking of the big
picture. After things settled down I think I would have been more able to
listen to what you had to say about living with a disability.

Maybe Joey's problems were too much, and
> Yvonne did the right thing. Joanne also did the right thing by fighting
for Alex.
> We have no stones to throw here.

I know I shouldn't speak for Yvonne, especially as she does it so well for
herself, but I really don't think anyone should go away with the impression
that Yvonne didn't fight for Joey. I've "known" her on line from this and
other lists. I've followed the triplets story and I was also there when she
wrote to say Joey had died. SHe fought as long and as hard as a mother
could. She also had the knowledge and the courage and the wisdom to know
that Joey had reached the point where any further heroic measures would only
prolonged his death but gave him no further hope for life. We all reach that
point, just some sooner than others, just some easier than others.

It shouldn't make a differance but it often becomes the desciding factor on
where you live and what the medical establishment/insurance companies offer
a person. As Yvonne mentioned in the Latimer case, in  Canada people think
because the government is more than willing to pay for respite/medical care,
doesn't mean there is anyone there to provide it. It may sound strange to
say Alex has been born under a lucky star but from the day he was born the
hospital staff ( social workers) did everything in thier power to make sure
Alex recieved insurance coverage that would give him the best care possible.
They may have been doing it with the intention of making sure the hospital
got paid for it's services but ALex was still the benificanary.The same went
with his surgical procedures. I had to learn to advocate for Alex (I'm such
a little mouse) and that it was ok to switch to other doctors who saw ALex's
potential as I did. Can you imagine I waffled for a long time the first time
I fired a MD from ALex's care. Iwas scared I would hurt his feelings ( as
if!).However, even the wonderful team of professionals we now work with
first ask what insurance we have before they offer a treatment. It didn't
sound like the   Latimers had the options Alex has had. Maybe Joey didn't
either.
Joanne

>