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 wonderful plans. The Coliseum. The Michelangelo David. The gondolas of 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! I’m supposed to be in 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 filty place full of pestilence famine and disease. It’s just a different place.
It’s just a different place. It’s slower-paced than Italy less flashy than Italy. But after you’ve been there 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 Rembrandt’s.
But everyone you know is 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 ever ever go away… Because the loss of that dream is a very very significant loss.