How are you

January 13, 1999

Mike

I know this probably isn't what you want to hear, but I found that by

being honest when people said " How's the baby " , I turned people away.

Yes, people cared the first month or so when it was unexpected that she

was in the ICU and having surgeries and so forth. But after 8 months,

when she was still having more surgeries, fighting for her life, rushed

to the ER, (you know the drill), people couldn't handle the truth, so

they deserted me.

I have since learned to say " She's doing wonderful. She's so amazing.

Thanks for asking. " My TRUE friends and those who REALLY care reveal

themselves by asking " Is she really? " or " What's been going on? " and

then I give the REAL explanation, but still keeping it upbeat and

positive. Usually people don't ask " But you said she's doing

wonderful. " Those who do, I tell them, well, that is wonderful for her,

it's relative. And I also explain that most people are saddened by the

truth, they understand. RESULTS: I have had so many people compliment

me on my upbeat attitude and how much they admire me. It doesn't turn

people away. It leaves me feeling more positive--i.e. if I say things

are wonderful enough, eventually even I start to believe it--honestly!

I also found that many people by asking " How is she " are really asking

" Is she OK " and want and NEED to be told " Yes she's OK " whether she's OK

or not. It only upsets them to say " No she's not doing well, right

now. " Also people ask " Is she GOING to be OK? " It's best to say " Yea,

she'll be fine, (I may just need to change what my view of OK is). "

If you need to talk to someone how your child is REALLY doing--do it

either on this listserv (that's what it's for), join a local support

group for dad's/families with special needs families, or see a counselor

(preferably one that specializes in helping families deal with special

needs children--see your local ARC chapter or children's hospital for a

referral).

Sorry to lecture and to ramble on, but that's what my experience has

taught me...anyone else?

Jeanne mom to Caitlyn cHaRgEr age 3 1/2yrs

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