Anna has been on my mind constantly these past few weeks. We think she may have another syndrome on top of her original diagnosis of Gorlin Syndrome, and we're waiting for her test results to come back. Any day now. (It's been 'any day now' for a week, which makes it frustrating.)
If she does have this new thing, I'll share more. (I've found that there's a fine line when you have a blog. How much should I share? Will my sharing help others? If the answer is yes, I try to share as much as possible with you.)
I've wanted to write more about my journey with Anna, but it just hasn't been the right time. I've written posts in my head for weeks, and then days later I'm so glad that I waited. I was just about to go to bed a few minutes ago, when God told me to write. So, here I am. I don't have much to share right now, but Welcome to Holland is a good place to start. This poem is well-known in the special needs community, although it obviously is applicable to pretty much every life situation where our expectations differ from our realities.
c1987 by Emily Perl Kingsley. All rights reserved
Welcome to Holland
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.