[tri-med] Re: Platitudes you hate

----- Original Message ----- 
From: "Karen" <karens@xxxxxxxxxxxxxxxx>
annee wrote:
>>>having never
>> experienced a trisomy child, what platitude would be appropriate for
>> someone  like
>> me to say (if platitudes are acceptable at all). ie, what can/should I 
>> say
>> to
>> you?

Karen wrote:
> It makes absolute sense. And I have to reiterate what Fawna said - what
> upsets one person can be a comfort to another.

That's part of what makes it so TRICKY!

And the same can be said for those whose children die, what comforts one 
royally ticks off another.

> There are however some "do's"
> Always refer to the child by name - it is not an it / he/ she / bub and
> absolutely never ever the "trisomy" kid - it is a very loved child and
> he/she has a name.

Untill you mentioned it I'd forgotten about that......in the hospital after 
Alex was born and we knew something was 'wrong', people kept refering to 
'him'.
I was in the nursery and somebody said 'baby boy Waite' and I started crying 
saying "his name is Alexander".
The nurse caring for him got a card out, wrote his name on it and placed it 
on the plexyglass. I was SO happy about that, and what a simple thing to do!

> . Most of us get completely irrational
> at times when we are first learning to deal with this and the lumpy 
> potatoes
> ARE a big deal today, right now.

What many people just don't understand is the extreme stress and duress 
people are under when there is something very, very wrong with their baby. 
There's not much else that can rock your world like something happening to 
your child.
And for the Moms who have just given birth and are dealing with all the 
'usual' postpartum stuff.......

> > And the worst thing I have ever seen done - Never ever ever send a 
> > sympathy
> card on the birth of a child. Tasteless, tactless and yes lets be honest - 
>  > inhuman.

NO WAY!!!!!!!!!!!!
I'm sure someone meant well but wow...........

Karen, you wrote a WONDERFUL post.

Michelle mom to Alex (20, partial trisomy 14 mosaic) and Molly (17)
MichiganUSA 


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

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