I am often asked to describe the experience of raising a child with a disability – to try to help 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 trip–to Italy. You buy a bunch of guidebooks and make your wonderful plans. You are going to see 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! I´m supposed to be in Italy. All my life I´ve dreamed of going to Italy.
But there is a change in the flight plan. They´ve landed in Holland and you must stay. The important thing is that they haven´t taken you to a horrible, disgusting, filthy place of 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. You will meet a whole new group of people you never would have met.
It´s just a different place. It´s slower placed than Italy, less flashy than Italy. But after you´ve been there for a while, you catch your breath and look around, you begin to notice that Holland has windmills, Holland has tulips and Holland even has Rembrandts.
But everyone you know is coming and going from Italy and they´re bragging about what a wonderful time they had there. For the rest of your life you will say, "Yes, that is where I was supposed to go! That is what I had planned!"
And the pain of that may never, 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 Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
Excerpt from "Kids Like These" written by E. Kingsley, illustrates a mother´s philosophy with regards to the birth of her child, born with a disability.