Holland and Italy: Parenting a Special Needs Child
An American friend of mine posted this story on Facebook the other day. When she was pregnant, she and her husband learned that the child would have multiple disabilities; they decided not to go for an abortion. Now 18 years have passed and the boy is disabled in many ways—he will never be able to be without constant care.
Welcome to Holland. 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—imagine how it would feel. It is like this...
When you’re going to have a baby, it is like planning a fabulous vacation trip: to Italy. You buy a bunch of guidebooks and make your wonderful plans; The Coliseum. The Michelangelo David, The Gondolas of Venice. You may learn some handy phrases in Italian. It is all very exciting.
After months of anticipation, the day finally arrives. You pack your bag 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 am supposed to be in Italy. All my life I have dreamed of going to Italy! But there has been a change in flight plan, they have landed in Holland, and there you must stay. The important thing is that they have not taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It is just a different place.
So, you must go out and buy new guidebooks. And you must learn a new language. And you will meet a whole new group of people you would never have met before. It is just a different place. It’s slower paced than Italy. It’s less flashy than Italy. But after you have been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, and Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy and they are 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 where I had planned.”
And the pain of that will 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 go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.#
Ulli Kotanko is a physician in NYC who became blind in medical school.