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I am often asked to describe the experience of raising a child with a disability - to help people who have not shared this 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 - to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. Michelangelo 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 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 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 will never, 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 go to Italy, you may never be free to enjoy the very special, the very lovely things. About Holland.
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