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

Conference doesn't really have "lecture" they are more interactive, but
it is a good idea.  I will mention it to Barb.
Faye

-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx]
On Behalf Of Debbie
Sent: 08/27/2008 3:05 PM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: conference video - was Do tri 13/18 kids
experience joy?

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



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

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