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, try 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 guidebooks and made your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some hardy 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 wanted to go 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 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 have never met.

It’s just a different place. It is 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 notice Holland has windmills, Holland has tulips, Holland even has Rembrandt.

But everyone you know is busy coming and going to 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.”

The pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss. But as 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.

Written By: Emily Pearl Kingsley