Wednesday, August 14, 2013

Partly Sunny With a Chance of Hopeful Weepies

I found this the other day. It made me stop because it is kind of like this, finding out I'm a carrier for Fragile X was like expecting to have a certain life, expecting a certain type of pregnancy, expecting certain kinds of kids and finding out I am somewhere else altogether. Not somewhere bad or horrible but somewhere VERY different than what I had planned or expected. So it is a loss. It might also be a gain and a purpose. My friend Dionna told me that maybe this would be my calling after I process my own feelings about this [she suggested this after hearing me rant and rave about how mad as hell I am that we don't know very much as a populous about Fragile X and that not every state automatically tests for this like it does for other things like Cystic Fibrosis, Muscular Dystrophy, and Down's Syndrome]. Maybe she's right. For now though, this explains my head and heart pretty well.


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."

Thanks to the archives at for this poem. It helped, a lot.


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