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Mothering a Disabled Child

I’m the mother of a person with a disability…actually, a more accurate description would be chronic medical condition. It doesn’t really matter, though; the effects of Daryl’s condition do constitute disability, and he and I and his sister identify with a lot of the perspectives put forth by the Disability Community. He was my first child, and I was told he had hydrocephalus (click here to learn more) the day after I gave birth. I was 19 years old and totally psyched about having a baby; the way my doctor presented the news, all doom and gloom, sent my world crashing.
Perfectly Normal
My memoir, available at Amazon.com

When I first read “Welcome to Holland,” reprinted below, I cried for a long time: it perfectly describes my feelings and experiences. Reading it again some 20 years later, it still makes me cry. It’s the best piece of writing I’ve yet to come across that communicates my motherhood experience to others.

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Daryl, now 41 years old

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. Michelangelo’s 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 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 . . . and you begin to notice that Holland has windmills . . . and Holland has tulips. Hol- land 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. Reprinted by permission of the author.

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One response »

  1. Thanks for sharing………….that WAS beautiful

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