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. Well, it’s like this…
When you are 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. The 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 flight attendant 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 has 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 awhile 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 is where I was supposed to go. That’s what I planned.”
And the pain of that 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 Italy, you may never be free to enjoy the special, the very lovely things…about Holland.
Source: Emily Perie Kingsley From a Reprint in “Family Resource Committee” Newsletter