[tri-med] Re: Platitudes you hate

----- Original Message ----- 
From: <Annee122884
>I just graduated from
> Indiana Wesleyan Univ. with my BSc in Nursing, if I may brag a bit :) 
> Since I
> haven't written in a while,

Congratulations!!! Picture of cap and gown please.....

>>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?

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

I have found the best approach is to say something to the effect "I am sorry 
that you are having to deal with this diagnosis. If I can help in anyway, to 
listen, to help you get information, to understand something or just to have 
a cup of coffee and NOT talk about it you only have to ask" And MEAN it. 
Next shift sneak in a treat for the mum :-)

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.

Help them to see the "typical" baby things - reassure them that more than 
anything their special child needs a cuddle, warm blanket and love just like 
any other child. Help them to see their child as that, their child. He / she 
still has mums eyes, dads ears and aunt Bessies smile. (not a ptosis, 
rosebud mouth and low set ears) You can, especially after the first 
devestating news, start to look at the "trisomy" rather than the 
individual - heck I did that even when I didnt have a diagnosis, just that 
something was wrong. I think the absolutely best trisomy feature of Alex's 
when he was a baby was his hand posturing - yeah I know its a T-18 thing but 
that characteristic hand posturing is also the American sign for "I love 
you" - it warmed my heart no end to know that he was born signing that he 
loved me. I love the person who pointed that out to me and this house is now 
filled with cookie cutters and brooches etc symbolising that sign.

LISTEN, LISTEN and LISTEN again. Parents will need to ask the same questions 
a zillion times, try not to get impatient. They can also get demanding - 
accept it and don't judge them for it. 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.

And above all let them talk and talk and talk about whatever they want to. 
Don't be afraid to let them say what is on their minds and don't blow things 
out of proportion. "I want to die" doesnt necessarily mean they want to kill 
themselves - sometimes its just a figure of speech and a way of expressing 
that things are just overwhelming. (I know you also cant ignore it - just 
take it in total context)

Do be an emotional barometer / barrier - sometimes the family can get too 
many visitors (or none). Do step in when needed and give the mum an out if 
she needs / wants one.

Do go in about 10 minutes after the doctor has left in case they have been 
left upset or not understanding what the doctor said. And do call the doctor 
back if they need it.

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.

Life consists not in holding good cards but in playing those you hold well.
                                            -- Josh Billings

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (12 years, T-18 Mosaic)
http://members.optushome.com.au/karens




 

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

Other related posts: