Steven and Sean on the Polar Bear Cam
Steven and Sean on the Polar Bear Cam

Thursday, March 18, 2004

Cycle 3, Day +7: Welcome to Holland

By Emily Perl Kingsley, mother of a child with Down's syndrome

©1987 by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author.

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.

Well, I guess we're in Holland.

Or, maybe not quite Holland, but similar. It's not that Holland is so bad, but there's always that fear in the background that we might be told we have to leave on short notice for somewhere else that's not as nice as Holland.

But, I guess that's what faith is all about.

A dear man sent that to me, the father of another boy, also named Steven, who completed the same trial that Steven is on last January. Steven von Spreckelson is about to graduate from high school, his website is here: I met him in person at St. Jude the day after Sean and I arrived in Memphis. Steven's father has been a great source of encouragement to me when times are hard.

Steven was feeling much better today. He ate, no fever, so we are back at Target House tonight, his blood was OK so no transfusions today, the transfusion will be on Friday, platelets and maybe red blood as well.

- Kathleen

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