Monday, November 12th, 2007

A note from my Mommy:

Sometimes, it is easy to get wrapped up in all of Peyton's medical issues. There is constant coordination with the nursing & DME companies, the various specialists caring for her and the agencies and insurance companies that pay for all of it! Last week I spent several hours on the phone with Delta to discuss how to travel with all of the machines she needs on a daily basis. Despite all of that, more and more I think of myself as just a mommy - not a mommy who has a baby with disabilities. I found this essay the other day and thought it did a good job explaining better than I could what it has been like for me. In the beginning it was so easy to focus on the "problems" that I failed to see all the wondeful things about Peyton. Now, I look at her and instead of seeing her fused finger or her trach, I see her beautiful smile and the dimple that is just like mine. There are many times I forget that she is not a "normal" baby because in so many ways she is. So for those of you who get to go to Italy send me back a post card because I'm having a wonderful time in Holland and I plan on staying awhile.

Welcome To Holland 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 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."