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

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 Michelangelo David. The gondolas
in Venice. You may learn some handy phrases in Italian. It’s all very

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 guide books. 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

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 may never be free to enjoy the very special, the very
lovely things … about Holland.


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