I am often asked to describe the unique experience of raising a child with a disablility---to try to help people who have not shared the experience to understand it, and 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 your wonderful plans. The Coliseum. Michelangelo's David. The Gondolas in Venice. You may even 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 announces, "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. You've landed in Holland and here you must stay. The important thing is that you haven't been taken to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place.
So, what do you do? You must go out and buy new guidebooks. You must learn a whole new language. You will meet a whole new group of people you would never have met. It's just a different place. It has a slower-pace, and is less flashy than Italy. But after you've been there for a while and you catch your breath, you look around and begin to notice that Holland has windmills. 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 go away, because the loss of that dream is a very significant loss.
But if you spend the rest of 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.
---Emily Perl Kinsley