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).
See also:
The New Country Called Heart Disease
In Praise of Solitude After a Heart Attack
How We Adapt After a Heart Attack May Depend on What We Believe This Diagnosis Means
l
Heart Sisters 
When your life changes you never even get to find out what Italy would have looked like. Being in Holland changes your life so profoundly, but after you learn the language and find your way around you can have a very good life in Holland, and maybe even visit Paris.
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So true, Annette. When your life changes suddenly, you can even forget entirely that you were ever headed to Italy!
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Thx for including this wonderful essay here for us. I never would have come across it otherwise. It’s so true for all types of unexpected realities that surprise us in life whether they be disabilities or chronic disease or sudden loss or failed expectations, anything we now have to learn to live with from now on. THANK YOU!
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Thanks QB – I love Emily’s words too. Very applicable to LIFE!
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In 1999 we landed in Holland, however for the first year we thought we were in Italy.
Our son, now 13, is autistic and has ADHD. When we first started noticing signs of his disabilities (around 13 months) we felt overwhelmed and alone. With no map or tour guide we stumbled through the dark streets and eventually found our way.
Our way isn’t without challenges, stress, guilt, hope & happiness, it is just our way or shall I say his way.
A few years ago we finally visited Italy (figuratively and literally) and I have to say it was wonderful.
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What a wonderful analogy, Marlene. I was just reading today about something called The Paris Syndrome, an actual range of psychiatric symptoms identified among tourists whose fantasies about seeing Paris for the first time cannot possibly match the reality. As expectant mothers, our fantasies about our babies never include having to live with disability. “Not what I signed up for!” as we used to say when I worked in hospice/palliative care. Thanks so much for sharing your perspective here – glad you finally got to Italy! 😉
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Carolyn,
You remind me of a time I actually said something similar when a passenger was disgruntled that there was a woman on the flight deck. “What, we’re not in Montreal?! Oh, I am so bad at reading a map!!”
Apropos Holland- I believe my ticket was for Italy but I am in the slums of Rio right now with no way out. This too shall pass, and soon, I hope.
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Hi JetGirl – I think the penny finally just dropped as I was typing your name: are you a pilot?
Love your Montreal comeback! And I hope your layover in Rio ends soon – or you’ll at least get to enjoy the lovely view from Christo Redentor . . .
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A friend of mine and her family recently sold their house and belongings to live their fantasy life in France. They had dreamed of this for a long time. They took a risk for which I admire them so much, and they finally found a place to rent. It wasn’t easy accepted in France, they used only their savings, they were not allowed to work, things went wrong every day. I too was waiting for that rainbow moment when everything worked out. Until, the place they were renting was completely flooded up to their stomachs. After all their dreams, their guts, they are now desperately trying to come “home” to the States.
A life lesson for us all, keep in neutral or cautiously optimistic, we don’t know what life will throw us at any minute. Be open and swim with the waves. Life is like that. We have no other choice.
With love,
Laurie aka Peachy Keen Junior
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So true, PKJ. We really do not know what life will bring next. On the other hand, I have friends who did as your friends did after they retired, and are indeed now living their own “fantasy life” in France. C’est la vie, n’est-ce pas? At least your friends did what so many of us are not brave enough to even try (follow that dream!) – I hope they get to that realization one day once they are safely back home.
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