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 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,
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 flight attendant 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 has 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 you begin to notice that
Holland has windmills, Holland has tulips, Holland 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 you’re 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 go away, because 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 lovely things about Holland.