Friday, April 23, 2010
WELCOME TO HOLLAND
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.
Friday, April 16, 2010
...and so, as it turned out, he had a wonderful day playing outside, eating pizza and playing Duck Duck Goose.
On the way home from school mommy asked "did you make any new friends." He said, "no I didn't make friends, I meet friends." I think he wanted to make it clear to mommy that he can't "make" friends.
A little later he said, "I sure love preschool, thank you mommy for letting me go to preschool." I suppose sometimes our kiddos just need a little tearful persuasion.
Sunday, April 11, 2010
When we talk to Eli it makes him smile.
Life really isn't about what we can do, it is more about who we are.
Eli is a very sweet and pleasant boy that loves people.
It really doesn't matter that he can't really talk, or walk or even hold up his head. Those are things that make life more acceptable, but would Eli be happier if he could walk?
I heard a story of a family with a little girl similar to Eli. The family tried everything to help her get better, but the dad said something very profound. He said we are doing all these treatments for us, it is not for her, she is happy.
I want Eli to get better, but I have to think why?
I want him to get better because it would be easier if he could hold up his own head. It would be so fun to see him walk. I would love to hear him say mommy, but ya know what.
He is Happy and I Know it, Because His Face Surely Shows It.