Monday, October 19, 2009


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 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.

This poem was written by the mother of a child with Down syndrome. I read it for the first time when Brennan was a couple of weeks old and felt that it put into words exactly what I was feeling. Suddenly, I was in a place that I wasn't expecting to go and quite honestly didn't want to be. I held out hope that, with time, I would find and enjoy the very special and lovely things about Holland. But now, I don't actually feel like I'm in Holland. I feel like I'm still in Italy - but instead of going to Rome and Venice - the cities where most tourists go, I get to go to Portofina and Vercelli - which are just as beautiful, but with fewer visitors. I'm a mother of four fantastic kids and happy to be exactly where I am.


Rachel Smith said...

That was so wonderfully put. We too can go to Italy, just like everyone else! Thanks for putting another perspective on this poem:)

Hector and Jennifer Varanini Sanchez said...

LOVE it Sharon! So right on. I feel the same way. We ARE in Italy and it's fabulous and it's off the beaten path and I'm thrilled to be visiting.

Emily said...

I love that! One of my favorites! I am totally happy where I'm at too! Couldn't have picked a better place!

Shauna Yule Brasseur said...

Oh, Sharon. You are just the best.

I love you,