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.
