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're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. Michelangelo's 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! 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 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 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."
The pain of that will never, ever, ever, 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 Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
"I was never sure why this poem bothered me so much. It's a beautiful story written by a parent who has a child with Down Syndrome. Then I realized why I wasn't comforted by this poem. When you have a child with emotional problems, life is always "up in the air" circling the airport. Rarely can one enjoy 'the very lovely things about Holland.' The plane never really lands!"
Barbara Huff (Keynote address at the Children's Mental Health Conference - Miami, Florida; 1992)