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

Hi Barb -
I was just remembering yesterday when Noah was in the hospital and the a
PICU nurse asked my sister whether he cried or did anything!  Boy, did we
jump to attention and from that point on showed every one of his nurses the
videos of him goo-ing, smiling and 'talking' back to me!  I immediately sent
someone home to get printed pictures of him healthy & happy that we taped to
his door.  I will always advise people to take a picture of their loved one
to the hospital and make sure caregivers know the person in the bed (maybe
in pain or sick) is NOT the whole person!  The nurses loved seeing who Noah
really was!
The doctors were of course another story.  We had excellent care but they
seemed disinterested when we tried to talk to them about the boy before the
time they were seeing him.  We did have maybe two doctors that took some
interest.  It is their work I suppose that forces them to be unemotional but
that that is so far out of MY reality, I want to shake
them! :)  Seeing western medicine in full swing with Noah in critical
condition was part marvelous and part totally discouraging.  The ability to
manage problems - marvelous.  The short-sightedness of only managing
symptoms and not looking at the whole picture, the whole body as a unit -
truly disappointing.

We just saw our neonatalogist at church Sunday and I wanted to go up and ask
him if he knew we had 8, almost 9, wonderful and challenging months with
Noah!  He was the one who insisted he would not survive a week.  He got out
of the sanctuary before I could!  HA!

In case you want to enjoy my sweet boy (and my silliness as Mommy) or share
another miracle, here's one of my favorite videos.
http://www.youtube.com/watch?v=oxzxa7eImUE

Melissa
Loving Mom to Noah (9/20/07-6/14/08)
full t18 & spina bifida




On Tue, Aug 26, 2008 at 9:09 PM, Barbara Farlow <b_farlow@xxxxxxxxxxx>wrote:

> 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....
>
> Barb  (mom to Annie)
>
>
>


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

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