[tri-med] Re: FayeRe: Do tri 13/18 kids experience joy?

Barb, the saddest thing is that if asked before hand if I was willing to
take a child with T-18 I probably would have said, "No thanks, I'll just
take the normal one.  Today 11 years and 10 months later, my life with
Morghan is much richer than it would have been with the "normal" child.
There are worries and experiences with Morghan that I would not have
with a "normal" child but, and that is a big but, there are worries
(drugs, teen pregnancy, car accidents etc) and experiences I would have
with a normal child that I will not have with Morghan.  When my friends'
kids hit the teen "I know it all and my parents are really dumb" years,
I will not know if Morghan thinks that as she does not speak.  You get
my picture.  

My point about the doctor speaking without first had knowledge is that
most of the doctors our children will meet have never met a child with
T-18 or 13 or T anything, so they can not know how one does or does not
interact, they have no idea that Morghan will crawl over to you and pull
herself up than walk you to her chair so you can give her some food or
just get you to pick her up so you can hold her because she has decided
to share her sweetness with you at that particular moment. 

We have a friend that is an OB/GYN when he heard about Morghan he was
surprised that we had heart surgery.  He attended a party for a mutual
friend when Morghan was about 6 months old because he heard we and she
would be there.  My friend told us that he had counseled families for
years to terminate "Morghan type pregnancies" and after seeing Morghan
and us and that we were happy he was ashamed of himself, ashamed that he
had counseled not from experience but from a text book.   That says it
all.

Sorry to have run on, you tell this is my "soap box".

Faye
-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx]
On Behalf Of Barbara Farlow
Sent: 08/27/2008 11:13 AM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: FayeRe: Do tri 13/18 kids experience joy?

HI Faye,
I agree, but that is the problem. This is a seasoned and experienced
neonatologist who has been directing parents on choices to make for
decades. 

One of the administrators at the hospital that we had our troubles at
told us that in one internal meeting pertaining to our situation, one of
our daughter's physicians, asked, "But who would want a child like that
anyways?"  Now I understand why. 

Our very aggressive government-run genetic screening/testing/termination
network uses teaching materials for physicians that show a severely
afflicted (likely stillborn) infant with trisomy 13 alongside a picture
of a cyclops as if to make the comparison of two monsters side by side.
(I am happy to forward the picture to anyone upon request)

Those who stand to profit by a reduction in medical costs that are
realized by the elimination of some kinds of kids, encourage the belief
that genetic kids are like non-sentient monsters with no worth
whatsoever. 

So, how do we make the truth be known?

Barb



> Subject: [tri-med] Re: Do tri 13/18 kids experience joy?
> Date: Wed, 27 Aug 2008 10:13:11 -0500
> From: fkaufman@xxxxxxxxxxxxxx
> To: tri-med@xxxxxxxxxxxxx
> 
> The doctor obviously spoke with out first hand knowledge!
> 
> -----Original Message-----
> From: tri-med-bounce@xxxxxxxxxxxxx
[mailto:tri-med-bounce@xxxxxxxxxxxxx]
> On Behalf Of Barbara Farlow
> Sent: 08/26/2008 8:10 PM
> To: tri med lists; triwings
> Subject: [tri-med] Do tri 13/18 kids experience joy?
> 
> Hello friends in trisomy,
> In communication recently with an experienced neonatologist, I was
quite
> surprised to read that he believed that children with tri 13/18 were
not
> worth saving because they were "not sentient", which means that they
are
> not capable of experiencing joy or interacting with their
surroundings. 
> 
> Wow. This is certainly not what I saw when I did research before my
> daughter was born. Sure, it is a tough road, with a lot of sacrifice.
> But as for not experiencing joy....
> 
> I sent him some videos; a child with tri 13 and mieko videos (I made
> special mention of the one aptly named, "giggles")
> I seriously wonder if loving parents see something as clear as day
that
> physicians and the medical system are blind to. 
> 
> Does anyone have any comments about this? 
> 
> By the way, the ironman just finished his 11th race to increase
> awareness. He is getting more and more press each time. It is pretty
> exciting. 
> 
> www.ironmanforkids.com
> 
> Barb  (mom to Annie)
> 
> _________________________________________________________________
> 
> 
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
> 
> 
> 
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
> 

_________________________________________________________________


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



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

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