Back in 1974, a writer named Emily Perl Kingsley had a baby boy she named Jason who was diagnosed with Down Syndrome. Years later, the writer for Sesame Street wrote an essay called Welcome to Holland about living with a child with that diagnosis. This essay has become a classic, and it may help those of us who face any life-altering reality we didn’t see coming – like a serious cardiac diagnosis.
Here’s what Emily wrote:
“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 Sistine Chapel, gondolas. You may learn some handy phrases in Italian. It’s all very exciting! After several 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!”
“And you say:
“Holland? 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 now go out and buy new guidebooks. 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.
“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’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 experience will never, ever, ever, go away. 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 appreciate Holland.”
© 1987 Emily Perl Kingsley
Q: What does Emily’s essay Welcome To Holland mean to you?
NOTE FROM CAROLYN: I wrote much more about adjusting to becoming a patient in my book, “A Woman’s Guide to Living with Heart Disease” . You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from Johns Hopkins University Press (and use the code HTWN to save 30% off the list price when you order).