Hi Joy,


> >Trish--I think all of us focus on those traits we feel are our
> >weaknesses---Sarah doesn't see CP as a problem--although after meeting
> Amber
> >she said she was lucky because "she can walk, but still is special
because
> >she has CP". She spent most of our trip to Washington taking in how
people
> >did things, how different their handicaps were.. and came away feeling
she
> >was in the middle. She said while some people could walk, it was hard for
> >them, some had to take lots of medicine, and some didn't even know why
they
> >had these problems!

        I am glad Sarah has such a healthy attitude - Guess you are doing
lots of good stuff. I think in public education we have a bit to go but many
ways all the awareness programs in schools help. I am not sure exactly when
the tide changed a bit  but today the atmosphere is much better than when I
started out with Amber 13 years ago. And light years ahead of when I went to
school - my best friend in 7th grade was a thaliamide baby and I remember
the other kids being afriad of her and her strange looking arms - they would
play with her so I just started on of those circle games grabbed her hand
and just did it. I am glad Sarah learned at lot at NORD thru people
watching. She and Amber seemed to enjoy each other. I think its important
for them to learn about other handicaps, what we learn as kids sticks with
us.

> >She also discovered how her mother plans for her needs ( straws, diapers
> >etc. ) making it easier--as some others were just winging it and had
> >problems..she always worries about having her needs meet..now seems more
> >aware of how to plan...I don't think she will have depression issues as
she
> >is so accepting and takes so much in her stride-- although sdhe is so
> >dependent on me I wonder how she will ever live on her own.....

   Joy, Sarah is still very young and you provide so much care becasue you
can - and this is great - Amber has had to learn to be more self -sufficient
becasue I can't be there or becasue of circumstances. She hadn't even turned
7 when her Dad walked. I held up - thru his leaving and thru being laid off
3 months later - but I broke down and cried when I lost our home becasue my
parents where afriad I wouldn't pay the rent - so they put me out and I had
no idea of how I was going to find a place to live with no husband or job -
I cried all the way home and when we pulled in the driveway - Amber said
Mommy - I think you need a nice bath and to go to bed. She led me in the
house - ran a bath, helped get me in the tub, then wrapped me up in a towel
and tucked me in bed - pulled a stuffed bunny off my headboard and tucked it
in my arm and then snuggled up next to me - becasue she thought maybe I
shouldn't be alone. She takes care of when I am sick - towards the end of
chemo last time I was so worn out - I just wanted to stay there laying  on
the bathroom floor and die - and she peeled me up and tucked me in bed,
little hands brushing my hair out of face - so mommy like. For the last
three - she has been getting herself off to school, she has missed the
school only twice, - when I don't have anyone to sit with her she goes and
sits patiently at my jobs - reading, coloring, doing her homework. Last
night she was at Hecht's with me till closing - no complaints. She used to
go to Service when I worked there - in fact they would put her to work
selling MDA Shamrocks - and she was happy to do it becasue it would help
some child a lot worse off maybe even dieing.  I have gotten flak for raving
about my child but she is angel - The Song that come to mind to describe her
is her favorite group N'SYNC 's God Must Have Taken a Little More Time With
You. and to describe how I feel about her - the lines from Wind Beneath My
Wings
DID YOU EVER KNOW THAT YOU'RE MY HERO,
AND EV'RYTHING I'D LIKE TO BE,
I CAN FLY HIGHER THAN AN EAGLE,
'CAUSE YOU ARE THE WIND BENEATH MY WINGS,

IT MIGHT HAVE APPEARED TO GO UNNOTICED,
THAT I'VE GOT IT ALL HERE IN MY HEART,
I WANT YOU TO KNOW THE TRUTH,
I WOULD BE NOTHING WITHOUT YOU,

YOU ARE THE WIND BENEATH MY WINGS!

         So many times I feel like I am robbing her of her childhood and
apologize becasue she has a lunatic mother and absent father and just hugs
me and corrects me with  - Lunatic father and stressed out mother - I love
you Mom.  Sarah will get there - let her take her time. Let her enjoy being
carefree - it only for a short while. This is gift you can give her. I know
I worry about what will happen to Amber when I die - I have done the best I
can to set stuff up - Betty gets her, she has a college fund and I have 2
life insurace policies, the house can be sold, I have a 401k, and of course
my pension and social security for now - my parents are wealthy and have
only her to leave their money to - so her future is secure. Its kind of
ironic - She would actually have a much better life than she can have with
me alive. But we are going to make it!!

> >
> >as to the mirror- look more often at that pretty woman!   joy

          Thanks - I will try.

                            Hugs to you and Sarah
                                  Trisha