I first came across Emily Perl Kingsley's famous article in the Chicken Soup of the Soul -- Children with Special Needs edition. This was the opening essay. It brought me to tears the first time I read it. And despite having read it for probably the hundredth time, it still bring tears to my eyes. I can openly talk about our son Kevin, the challenges he went through, the triumphs he has made, the inevitable future. But not without having tears well up my eyes, no matter what.
Because Emily Perl Kingsley is right. There is a raw pain, hidden very much deep within that will never, ever, ever go away. But it also brought special meaning - a reason for being, in our lives. And in the grand scheme of things, the wisdom behind the reason is more important than the pain.
Welcome to Holland by Emily Perl Kingsley
c1987 by Emily Perl Kingsley. All rights reserved
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 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.
About the Author
Emily Perl Kingsley is a writer who joined the Sesame Street team in 1970 and has been writing for the show ever since. Her son Jason Kingsley was born with Down Syndrome in 1974. At the time of his birth, it was commonly believed that children with Down Syndrome could never learn to walk or talk. Kingsley's work as a writer and activist for children with special needs helped change this perception. Her experiences with Jason inspired her to include people with disabilities into the Sesame Street cast, including an actress who uses a wheelchair, Tarah Schaeffer, and even Jason himself. Jason's story was the topic of an hour-long NBC television special in 1977, titled "This Is My Son," and with co-author Mitchell Levitz, Jason wrote the book "Count Us In: Growing Up With Down Syndrome."
Because Emily Perl Kingsley is right. There is a raw pain, hidden very much deep within that will never, ever, ever go away. But it also brought special meaning - a reason for being, in our lives. And in the grand scheme of things, the wisdom behind the reason is more important than the pain.
Welcome to Holland by Emily Perl Kingsley
c1987 by Emily Perl Kingsley. All rights reserved
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 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.
About the Author
Emily Perl Kingsley is a writer who joined the Sesame Street team in 1970 and has been writing for the show ever since. Her son Jason Kingsley was born with Down Syndrome in 1974. At the time of his birth, it was commonly believed that children with Down Syndrome could never learn to walk or talk. Kingsley's work as a writer and activist for children with special needs helped change this perception. Her experiences with Jason inspired her to include people with disabilities into the Sesame Street cast, including an actress who uses a wheelchair, Tarah Schaeffer, and even Jason himself. Jason's story was the topic of an hour-long NBC television special in 1977, titled "This Is My Son," and with co-author Mitchell Levitz, Jason wrote the book "Count Us In: Growing Up With Down Syndrome."
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