[tri-med] Re: conference video - was Do tri 13/18 kids experience joy?

What a great idea! I would buy a DVD as my computer is not the best 
way for me to download stuff from overseas, it keeps stopping and 
starting and is so frustrating.

At 06:04 AM 28/08/2008, you wrote:
>Why can't the lectures, etc, at the SOFT conferences be taped/video'd for
>those of us who cannot go?
>In this great age of technology, if some one could tape the conference, it
>would be nice to send copies to the drs who *are openminded, (the others are
>hopeless) or posted them (I'll do that)!  Send me a VHS, DVD, CD, 8mm...
>whatever you have... Claire wouldn't mind giving up some space on her site
>and others could link to it if they wanted... does such video exist?
>
>Going to CO was just too much of an expense for us this year - including
>time off work - and the same for many other families, but to see this stuff
>on my pc would really be beneficial to my family and many many others.  It
>would also motivate folks to go to the conference when it is closer to where
>they live... and give input and get feedback in person.
>
>Debbie, mom to Claire(T18)
>
>On Wed, Aug 27, 2008 at 1:39 AM, <dncingqwn@xxxxxxx> wrote:
>
> > this is just one of the reasons that i would encourage anyone to try to get
> > their doctors to attend even a small part of a SOFT conference or something
> > similar. everywhere you turn around you find a bright shining 
> personality. i
> > can remember sitting in the lobby in denver one night. saskia was 
> on the end
> > flirting with any man that would walk by and look at her. any one of the
> > women tried to talk to her she just gave the look like?"excuse me, i'm
> > busy." and went back to smiling and reaching for the nearby 
> men.?morghan was
> > pretending, as usual, that she wanted nothing to do with either 
> me or kaiya.
> > (one of these days she's going to give me a hug i just know it!) 
> but she was
> > perfectly content to sit and cuddle with her mom or debbie.?kaiya was
> > hamming it up for anyone that would talk to her. and little ava was asleep.
> > kaiya looked over at ava all snuggled up, let out a big yell, and then kept
> > looking at ava sleeping. she let out a couple more yells until ava finally
> > woke up, cry
> >  ing because the mean loud kid scared her. kaiya gave one of her evil
> > little smirks, started giggling, and then went back to hamming it up for
> > everyone else. all of these kids are extremely interactive. i could go on
> > all day with stories about different kids... it's ridiculous that doctors
> > feel they have the right to treat families so carelessly. these are our
> > children, and while the doctor may have a difference in opinion in reguards
> > to care, it does not give him the right to disrespect our families by
> > treating one of the members as if they are worthless. it took kaiya's ped a
> > long time before he addressed her specifically. he would come into the room
> > and talk to me, and hardly look at her it seemed. she would be grabbing his
> > hands, his stethoscope, his jacket, anything to get his attention - and he
> > just didn't look at her. one day he tried to look into her mouth with a
> > tongue depressor. she clamped her little mouth shut as soon as she saw the
> > darn thing. he finally looked a
> >  t her. and i think he was amazed at what he saw. he even said someth
> > ing like, "she's a lot smarter than she gets credit for." i wanted to shout
> > DING DING DING! you win the prize! way to pay attention and realize that
> > there is a kid under that diagnosis! now when he walks into the 
> room he says
> > hi to HER and talks to her for awhile before talking to me. of course now
> > he's asking her things like, "what did your mom do to you this time?"...but
> > that's a whole nother story :)
> >
> > i don't know if i'm making excuses for them, because i refuse to believe
> > that anyone could be so heartless, but i think that all doctors 
> need to hold
> > themselves back sometimes. especially the ones dealing with children. it
> > would be so easy to get attached to all of their patients i'm 
> sure, but then
> > how would they go home and sleep at night. i was watching one of the baby
> > shows on TLC the other day and a woman that had lost twin boys said
> > something that struck a chord with me. she said, "nobody ever 
> told us before
> > we got pregnant that babies can die." when i heard her say that, it struck
> > me immediately that that was probably what my biggest problem was. i went
> > into the pregnancy with the assumption that i would have a healthy baby at
> > the end of it. there was no reason not to think that way. there was no
> > reason for a doctor to tell me "hey, just so you know...some 
> babies die." so
> > it comes down to tact, and the ability to empathize with a patient without
> > making their issues your
> >  own. they don't have tact101 in medical school, and maybe they should. i
> > wish there was some way to help these doctors understand, and 
> some will, but
> > most won't....and it's a good thing we have this listserv to vent about
> > their ridiculous behavior.
> >
> > and i would definitely love to know if there was a copy of dom's speech
> > available. i was there, and it was really really moving. i would love to be
> > able to share that with my family, kaiya's teachers, and people that work
> > with her.
> >
> > kelly - mom to akaiya t18
> >
> >
> > -----Original Message-----
> > From: Barbara Farlow <b_farlow@xxxxxxxxxxx>
> > To: tri med lists <tri-med@xxxxxxxxxxxxx>; triwings <
> > tri-wings@xxxxxxxxxxxxx>
> > Sent: Tue, 26 Aug 2008 8:09 pm
> > 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
> >
> >
>
>
>--
>
>When babies look beyond you and giggle, maybe they're seeing angels.
>~Quoted in The Angels' Little Instruction Book by Eileen Elias Freeman, 1994
>
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>
>
>
>
>--
>No virus found in this incoming message.
>Checked by AVG.
>Version: 7.5.524 / Virus Database: 270.6.9/1636 - Release Date: 
>26/08/2008 7:09 PM

Jocelyn, wife to Frank, loving Nanna to Tess with Trisomy 18, age 11 
years, and four other beautiful grandchildren,
  living in New South Wales, Australia
. 

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

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