I am often asked to describe the experience of raising a child with a disability — to try to help people who have not shared the 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 trip — to Dubai . You buy a bunch of guidebooks and make your wonderful plans. The Burj Khalifa . Malls “Dancing fountains “. You may learn some handy phrases in Arabic . 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 comes and says, “Welcome to Goa .” “Goa !” you say. “What do you mean, Goa ? I signed up for Dubai ! I’m supposed to be in Dubai . All my life I’ve dreamed of going to Dubai .” But there’s been a change in the flight plan. They’ve landed in Goa , 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 guidebooks. 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 Dubai , less flashy than Dubai . But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Goa has beaches , Goa has fields, Goa even has waterfalls .
But everyone you know is busy coming and going from Dubai , 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 that you didn’t get to Dubai , you may never be free to enjoy the very special, the very lovely things about Goa.