A dear friend of mine, who has a chronic illness herself, sent me this. It resonated with me so much, that I wanted to share it here on my blog:
by 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 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.”
[Note: Author Emily Perl Kingsley wrote "Welcome to Holland" in 1987. She has been a writer for Sesame Street since its earliest years. When her son, Jason, was born with Down syndrome in 1974, Emily and her husband Charles became activists, educating the public and developing resources to help Jason and other kids with special needs fulfill their potential. When asked why she thinks "Welcome to Holland" has had such resonance for so many people, she replied: “It's about a lost dream, any lost dream. Any change from the original plan. It says that it's okay to continue to feel the pain of the loss; that it's legitimate pain. It says that you're entitled to be disappointed, which then allows you to go on and enjoy what you did get.”]
As I walk through the tulips, I gaze in wonder at the precious beauty that is my daughter. A baby who has been dealing with this adversity before she could even walk, or got her first tooth. She has already been an inspiration to me. Who knows how many others will hear her story and be changed by it?
In Holland, we see things that are heartbreaking...
Do things that other people think are strange...
And do things we never thought we'd ever have to do.
There are bad days in Holland...
Really bad days.
But there are good days too.
In fact, Holland can be a beautiful place to be.