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

Ok, now I am really disappointed to have missed conference!  Andrew was
absolutely charmed by Saskia at the SLC conference in 2002(?)  And I
would've loved to see Dom's speech in person!  Oh well, next time
maybe...but I don't know if we will be able to get all the way to Virginia
from Idaho...


Jennifer Vanderbeek
Meridian, ID
Mom to Arwen, 10; Elanor (T18), 8; caregiver to Joe (CP), 29, and wife to
Andrew

Visity Elanor's Caringbridge site at:

http://www.caringbridge.org/visit/elanoranne 




-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx] On
Behalf Of dncingqwn@xxxxxxx
Sent: Tuesday, August 26, 2008 11:39 PM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: Do tri 13/18 kids experience joy?

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


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

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