Wednesday, January 4, 2012

Italy & Holland

One of our close relatives, A & D, got a print out of an amazing write-up for us to read shortly after Samaira was born. I have read it over and over again, just to feel the relief that I was not alone in feeling the way I did. Siddhu and I sort of started talking in these terms after reading it. I feel bad about feeling this way because it talks about the feelings of disappointment, shock and disbelief that parents go through on learning about their child's disability. As bad as I feel about it though, I have to admit that every single word written here is true - something that the two of us, and all the parents in a similar situation go through. I guess it is a part of the process.

I figured it is worth (re)documenting this write-up. So here it is:
©1987 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 Colosseum. 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.

It is obviously a very parents-centric view of this journey. At some point, very very soon, though - I will start thinking in terms of Samaira's journey - her joy, her satisfaction, her pain, her struggles, her failures, her dreams, her wishes, her success, her achievements, her victory, her pride, her life.

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