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

Wow that sounds like our live in a nut shell.  I wouldn't trade any of it for 
all the money in the world.  I would like to disappear once in awhile, but not 
for long just to get myself back together.
Tracy mom to Cody (Trisomy 9p)

-------------- Original message -------------- 
From: Irene <67.irene@xxxxxxxxx> 

> 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 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 
> 

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

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