©1987 by Emily Perl Kingsley. All rights reserved. Article printed with permission of the author.
I am often asked to describe the experience of raising a child with 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. 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 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, 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."
And 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.
Emily Perl Kingsley
is the mother of a child with Down Syndrome, Jason.
Over the years she has done
much to improve the ways in which people with disabilities are portrayed
in the media. She worked as a writer for SESAME STREET, receiving many
Emmy Awards and was instrumental in integrating mentally and physically
disabled children and adults into the format of SESAME STREET. Her works
with the National Down Syndrome Congress, National Media Council on Disability,
as well as numerous publications have earned a multitude of humanitarian
awards and special recognition for herself and her family.
WELCOME TO HOLLAND is her inspirational
essay which has been reprinted in many languages and in many forms all
over the world. Dear Abby runs this piece every October to commemorate
National Down Syndrome Awareness Month and it has been reprinted in CHICKEN
SOUP FOR THE MOTHER’S SOUL. It has been used as the theme for several
disability conferences, was worked into a patchwork quilt and is the subject
of a series of oil paintings. It was recently set to music as a choral
piece by composer Terrence Minogue and was performed at a concert in Sacramento,
California.
For the full biography of Ms.
Kingsley click here.