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

So true!  So completely true.  And your comment about counseling based on
text books, and not real life?  Perfect.
Every once in a while I look at Caroline and get this overwhelming feeling
of love for her.  Of course, I love all my kiddos like crazy, but it is
different with Caroline.  She is so pure and so sweet and so happy
(usually).   I often just think - after over 6 years with her, I can't
imagine life without her.  Yes, things can get hard and tough and I can
start feeling very sorry for myself.  But then again, I am not sure I would
really want anything any different.  My life has changed drastically because
of her, but I am often very glad it did!

Irene

On Wed, Aug 27, 2008 at 1:28 PM, Kaufman, Faye <fkaufman@xxxxxxxxxxxxxx>wrote:

> 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
>
>


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

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