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By Emily Perl
Kingsley
I am often asked
to describe the experience of raising a child with a disability
-- to try to help people who have not shared that unique experience to
understand it, to imagine how it would feel. It's like this...
When you're
going to have a baby, it's like planning a fabulous vacation trip to
Italy. You buy a bunch of guide books and make your wonderful plans...
the Coliseum, the Sistine Chapel, Gondolas. You may learn some handy
phrases in Italian. It's all very exciting. After several months of
eager anticipation, the day finally arrives. You pack your bags and off
you go.
Several hours
later, the plane lands. The stewardess comes in and says, "Welcome to
Holland!" "Holland?" you say. "What do you mean, Holland? I signed
up for Italy. I'm supposed to be in Italy. All my life I've
dreamed of going to Italy." But there's been a change in the flight
plan. They've landed in Holland and there you must stay. The important
thing is that they haven't taken you to a horrible, disgusting, filthy
place full of pestilence, famine, and disease.
It's just a
different place. So, you must go out and buy new guidebooks. And you
must learn a whole new language. And you will meet a whole new group of
people you would never have met. It's just a different place. It's
slower paced than Italy, less flashy than Italy. But after you've
been there for a while and you catch your breath, you look around.
You begin to notice that Holland has windmills. Holland has tulips. And
Holland even has Rembrandts. But everyone you know is busy coming and
going from Italy, and they're all bragging about what a wonderful time
they had there.
And for the rest
of your life you will say, " Yes, that's where I was supposed to go.
That's what I had planned." And the pain of that experience will
never, ever, ever, go away. The loss of that dream is a very
significant loss. But if you spend your life mourning the fact that you
didn't get to Italy, you may never be free to enjoy the very special,
the very lovely things about Holland.

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