[tri-med] what to say/not to say

Wow, this is a whole new topic of discussion coming off the baby Faith
subject line.

 For me it was the "You were specially chosen".  Like THAT made me feel any
better!!!! Or "You never get more than you can handle". That was a crock of
crap too. Notice the depression, divorces, constant fears, at one time or
another we simply DON'T handle it.........you just deal with things the best
way you can. And my Mom crying everytime she came to the hospital really
helped me out a lot. NOT. I dreaded her visits and having to be strong for
everyone else who was saddened and terror stricken by our "non-typical" and
we don't know why baby. Nobody knew how to handle the anti-hallmark moment.
I'd wait till night to sob and cry in the shower.

HOWEVER, I realize that when people give the platitudes it's because they
want to say SOMETHING to try and make you feel better and they just don't
know what else to say. And some people, when they are stressed and hurting
take great offense at what are intended as words of comfort. I thank my
lucky stars the people care enough about us to try and offer words of wisdom
or comfort. And some are more inclined to aggressively than others. Those
folks are generally "the fixers".....the ones who feel the need to try and
fix others problems.

There are those who seem to try and push us in a direction we aren't
currently going. That's not a help but what they see as "the best" way to go
may reflect their own feelings and fears. MOST of those folks don't mean
harm although I think some do.

I know that since being part of this list I now say things differently upon
deaths or serious illnesses. And when this discussion has cropped up on the
list before it's become clear that many others are the same way also.

Michelle mom to Alex (15,partial trisomy 14 mosaic) and Molly (11)
MichiganUSA



----- Original Message -----
From: "Harris Rachel L Civ WRALC/FMH" <Rachel.Harris@xxxxxxxxxxxxx>
> You know this reminded me of when people say ---it doesn't matter if it is
a
> girl or boy ---we just want a healthy baby ---WELL --SO --if you do not
have
> that healthy baby ---are you going to send it back or what--trade it in
> ---you know you can not just place an order for the baby ---if so we
> definitely would NOT have ordered trisomy as the dish---BUT we have
it --and
> we are all living with it.
> -----Original Message-----
> From: Wendy Hagen [mailto:wendyhagen@xxxxxxxxx]
>
> Oh, I don't think they are rude. They mean well. I guess they just don't
> think about it. I am sure learning a lot about what to say and what not to
> say to people that are going through a difficult time.
> Wendy

> >>>>>>> .So many people say,"Oh at least you know about her condition
> > beforehand. At
> > least you can prepare for it. At least you were not expecting a healthy
> > child and then at birth you find out she is not." Don't you love the "at
> > leasts"? I find this uncertainty and decision making process so
difficult
> > -especially when my husband and I disagree. I don't want to give up on
he=
> r,
> > but I also don't want to be unrealistic & I don't want her to suffer
only=
>  t=3D
> > o
> > die in the midst of it.<<<<<<
> >=20
> >=20
> > {{{{{{{{{{Wendy}}}}}}}}}
> >=20
> >=20
> > don't you just "love" people who are so rude.......
> >=20
> > Don't fight with dragons for you are crunchy and good with ketchup!
> >=20
> > Susan mom to Rebecca t18m  11 years old! and Mark  10 ADD/LD
> > hardyboys@xxxxxxxxx
> >=20
> > http://www.geocities.com/rainbowkaz/hardy2001.htm
> >=20
> > Ontario, Canada
> >=20
> >=20
> >=20
> >                 Building ___ooOOoo__ Rainbows
> >                      www.trisomyonline.org
> >                 Families Helping Families On-line
> >=20
>
>                   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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