Monday, January 26, 2009


By:Emily 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 know some of you have seen this but I wanted to share it with those that have not. It's such a good way to look at situations when our plans don't go quite the way we thought they would but if we change the way we look at things and accept them for what they are, we may see a whole different world.


  1. Hi Adrienne,
    I absolutely love your blog and hope it's ok if I start following your journey. I have "seen" you on the BBC boards and just think you are doing SO great with everything!
    We didn't have a prenatal dx with Dylan, (who is now 7 months old!) but found out shortly after his birth about his Down syndrome. Over the next month or so, I would say we probably received at least 5 copies of this poem in the mail from friends and family!! It's a wonderful poem, for sure. I remember reading it for the first time in the NICU and thinking...hmm...maybe this won't be so bad after all.
    Anyway...Im so glad I found your blog and am looking forward to reading more!
    Take care,

  2. I'm in Holland too! It's beautiful here isn't it?


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