"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 are going to have a baby, it's like planning a fabulous vacation to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michaelangelo 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 being in Italy."

"But there has been a change in the flight plan. They have 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 famine and disease. It's just a different place.

"So you must go out and buy new guide books and must learn a whole new language. And you will meet a whole new group of people who you would never have met.

"It's slower paced than Italy, less flashy than Italy. But after you have been there for a while and you catch your breath you look around and you begin to notice that Holland has windmills, Holland has tulips. Holland even has Rembrandt's.

"But everyone you know is 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 go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."