"NO!" and Holland

WELCOME TO HOLLAND

byEmily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

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.

I read this story before I ever had kids. My mom is a special ed teacher and had shared this story with me because she thought it was so beautifully written. When I first heard it, I agreed with her. Then, years later, we had a daughter and even later we learned she was deaf. The whole process of having her diagnosed was like a strange episode of the Twilight Zone, and to be honest, I can't exactly remember everything. I think it's called post-traumatic stress syndrome or something, I don't know.

But I do know when she was diagnosed, we were given a booklet on having a disabled child and where to turn for services. I'm sure it had a very nice title, but I just remember calling it the "You Have A Disabled Kid 101" binder. I hated that binder. And in the very front of that binder was the Welcome to Holland story. I can recall clearly opening the front cover and seeing that horrible, stupid, enter-an-expletive-here story and suddenly hating it. Because it was painfully accurate. I was in Holland. And at that point, I was pissed. I hated the stupid piece of paper that seemed to be mocking me, knowing how I felt without knowing me, and telling me that at some point I was going to be ok with what was happening.

Now, I can look back at this story, and I love. It is perfectly written. It's exactly how I feel. Yes, it still hurts that I didn't get my perfect, "normal" little girl like everyone else got. I still get bitter pangs of jealousy when my friends recount the funny things their children say, when my child is barely putting two words together after years of hard work on my part. But I'm starting to see a lot of good things, too.

Lexie has started saying "no". I know that's a normal 'first word', and most people wouldn't be that excited about it, but every time she says "no", I love it!! It's not just a label, she's not just repeating back a phrase she's been taught like a trained animal. When she says "no", she's actually expressing a feeling, telling me a desire. When I ask her if she wants something and she says "no", it's an actual conversation!!! That's the biggest thing; I can't tell you how many times I've cried over not being about to have a two-way conversation with my child. I know that her "no" is just the beginning of this. The first time I heard her say "no", I almost cried, except we were in Lexie's classroom with her teacher and that would have been embarrassing.

I guess I just wanted to share this amazing story. For anyone who has ever wondered what it's like to have this experience, that's it. It's nice for me to be able to look back and see that I'm coming around to living in Holland.