In 1974, Emily Perl Kinsley, a writer on Sesame Street and a bonafide F.O.E. (Friend of Elmo), gave birth to a son with Down Syndrome. Like most parents, in an era where the Oregon Court of Appeals upheld the sterilization of a seventeen-year-old cognitively impaired girl, Emily’s doctor assumed that she would institutionalize Jason immediately. He gave her medication to dry up her breast milk. Instead, Emily (and her husband) took Jason home, found other families with Down Syndrome children, and even featured Jason on episodes of Sesame Street.
Emily, living every three-year-old’s dream
A decade later, Emily found herself at the bedside of a woman who had unexpectedly had a baby with Downs. She gave the woman a pep talk, likening becoming a parent of a disabled child to getting on a plane to Italy but ending up in Holland. She wrote it out, probably in the middle of the night or whenever she got her “me time,” and “Welcome to Holland” was included in the end credits of the 1987 CBS Movie-of-the-Week “Kids Like These,” written by Emily, about a family who does not institutionalize their child with Downs. Since then, it has been widely upheld as the serenity prayer of disability parenting:
Welcome To Holland by Emily Perl Kingsley
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 guidebooks 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 flight attendant 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.
©1987 by Emily Perl Kingsley. All rights reserved.
Emily and her son Jason, who is now in his 40’s
Many parents have shared that these words have, quite literally, saved their lives. Some have criticized “Welcome to Holland” for painting a rosy picture of what can be a very painful situation. Kristen Groseclose, the mother of a child with Smith-Kingsmore Snydrome, a rare genetic disorder that causes a variety of neurological complications, writes:
“If we are going through a period of calm … I’m smelling the tulips, choked up by their beauty and thrilled to be in Holland instead of Italy. If I’m feeling scared and lost however, this essay mocks me with its seeming flippancy... Jack battling random scary health issues that he can’t verbalize does not equate to our family just moving to a different yet equally attractive European locale.”
Emily Perl Kinsley has pointed out that she only meant to speak about what it’s like to have a child with Downs, and that the experiences of parents with disabilities are vastly different. I, for one (that one not being a parent of a disabled child, at least not yet), see the pain quite clearly in Emily’s words, though I think she does, for better or worse, call for that pain not to turn into suffering.
I return to “Welcome to Holland” every year, when I speak to my general-education-teachers-in-training about the parent experience. And I’ve thought about it a lot in the garbage fire that is 2020, when I reflect, daily, on how far my reality is from the plans and expectations I had. Everyone is different, but many parents of disabled kiddos who I’ve spoken with or read about tell tales of joy, yes, but also desperation and isolation. I’ve been feeling those feelings pretty hard these last months, because, as I frequently tell my four-year-old, “I am only one person! And being a mommy is really hard sometimes! And for the love of god, eat your Mac and Cheese, it is the exact same kind you ate yesterday and there is no logical reason for you to insist that it ‘smells yucky'!”
Holland is too kind - parenting in 2020 is more like the ill-conceived day trip from Prague to Dresden my brother and I once took in college. We were looking for history (and a short train ride), and what we found instead was a city that no one wanted to be in, that had 60-year-old gaping holes everywhere, and in which one coffee shop worker looked at us with bewilderment, and a little disgust, when we asked what he liked about living there. Everyone in Dresden assured us that it was a shit hole. And it mostly, objectively, was. But I’ll never forget my trip there, how we laughed until our stomachs hurt when we discovered that the old palace full of artifacts we eventually found, was, in fact, a steaming pile of replicas.
This year of parenting may be the slice of Holland, or Dresden, that many of us had never expected. Some of us were always living there, but the silver-linings have just gotten slimmer. Kristen Groseclose, the mother who wants us to feel our pain as deeply and truly as we feel our joy, writes:
“Being comfortable with ambiguity, and holding joy and sorrow at the same time helps us develop an emotional resiliency that allows us to be the parents we need to be.”
Amen, sister. And she shares another quote that she finds more fitting to the life of parenting a disabled child. This one is by 17th century poet (and samurai, may we all be so lucky to have “and samurai” follow our names) Mizuta Masahide:
"Barn's burnt down -- now I can see the moon."
And of course, it speaks to the ways that all unmeasurable crises bring us beauty even as they split us open, devastate what we’ve built and imagined for ourselves. Even a bombed-out city is a place where you can spend a lovely afternoon.
Do You Want More?!!!??!
-Read an interview with Emily Perl Kingsley
-Watch Jason and Ernie make funny faces on an episode of Sesame Street
-Learn about Julia, Sesame Street’s autistic character
Welcome to Holland, 2020.
You are, somehow, as always, in my heart and in my head. And samurai.
What a great article and reminder during this hard time!