Vent-users List: Re: .

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Ms. Skinner,
I don't know you, but I read your comments and felt compelled to =
respond.

>My little daughter is a C-1 to C-4 quad since a car accident in 1995 - =
she
>was only 4 when her life, her future, and her childhood was ripped from =
her.
>YES, she is still alive, she has a future...(wonder what kind)...and =
she is
>still a child (one that will never join in fun games, never sit in a =
"normal"
>classroom", one that will NEVER go to a prom, etc. one heck of a =
"childhood,
>right?) Perhaps it would be of SOME INTEREST to you and your University =
to
>see how small children and their parents feel about THAT.=20

First, in defense of Brent, I'm sure that Brent didn't mean anything by =
excluding parents as subjects for his research. You seem to take this =
awfully personally and I don't think that's being fair to Brent.

Second, I can't begin to understand the anguish you feel because of her =
injury, but I think it's premature to judge her quality of life. There =
is no reason why she can't be in a "normal" classroom with appropriate =
assistance. Your daughter's childhood will be different than most, but =
you can still make it a wonderful time for her.=20

>Being a C-6 to C-7 quad is a tough call - and I admire your spunk to =
make
>your doctorate, to keep on going, despite the obstacles. GREAT...KEEP
>GOING!!!!!
>Just...try to imagine a life as a C-1 quad....half machine/half human
>being...JUST TRY TO SEE FOR ONE SECOND THE WORLD FROM THIS
>PERSPECTIVE....C-1's in kids are rare...but they ARE HERE! PLEASE TRY =
TO
>REMEMBER THEM...THEY HAVE FAMILIES, LIVES, HOPES TOO...

I also use a ventilator, but I don't see myself as half-machine. Your =
daughter is still very much human and in time you will begin to see the =
extraneous equipment as part of her daily life. I just want to point =
out that this view of your daughter would be considered offensive by =
many on this list.

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>My little daughter is a C-1 to C-4 quad since a car accident in = 1995 -=20 she
>was only 4 when her life, her future, and her childhood was = ripped=20 from her.
>YES, she is still alive, she has a future...(wonder = what=20 kind)...and she is
>still a child (one that will never join in fun = games,=20 never sit in a "normal"
>classroom", one that will = NEVER go=20 to a prom, etc. one heck of a "childhood,
>right?) Perhaps it = would=20 be of SOME INTEREST to you and your University to
>see how small = children=20 and their parents feel about THAT.

First, in defense of Brent, I'm sure that Brent didn't mean = anything by=20 excluding parents as subjects for his research. You seem to take = this=20 awfully personally and I don't think that's being fair to Brent.

Second, I can't begin to understand the anguish you feel because of = her=20 injury, but I think it's premature to judge her quality of life. There = is no=20 reason why she can't be in a "normal" classroom with = appropriate=20 assistance. Your daughter's childhood will be different than most, = but you=20 can still make it a wonderful time for her.

>Being a C-6 to = C-7 quad=20 is a tough call - and I admire your spunk to make
>your doctorate, = to keep=20 on going, despite the obstacles.=20 GREAT...KEEP
>GOING!!!!!
>Just...try to imagine a life as a = C-1=20 quad....half machine/half human
>being...JUST TRY TO SEE FOR ONE = SECOND=20 THE WORLD FROM THIS
>PERSPECTIVE....C-1's in kids are rare...but = they ARE=20 HERE! PLEASE TRY TO
>REMEMBER THEM...THEY HAVE FAMILIES, LIVES, = HOPES=20 TOO...

I also use a ventilator, but I don't = see myself=20 as half-machine. Your daughter is still very much human and in = time you=20 will begin to see the extraneous equipment as part of her daily = life. I=20 just want to point out that this view of your daughter would be = considered=20 offensive by many on this list.