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 guidebooks
and make your wonderful plans: the Coliseum, Michelangelo's
David, the gondolas in Venice. You may learn some handy
phrases in Italian. It's all very exciting.
After 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 and you
begin to notice that Holland has windmills ? and Holland
has tulips. 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 will never, ever, ever, ever go away,
because the loss of that dream is a very, very significant
loss.
But if you spend your life mourning the fact that you didn't
get to Italy, you many never be free to enjoy the very special,
the very lovely things about Holland.