I wanted to post this story I received from a friend in Texas who also has a little girl with SMA. It truly expresses my feelings and I thought I would share it with you so you could get a small glimpse of our lives and feelings. *Get your Kleenex ready!
Author: Emily Pearl Kingsley
"I am often asked to describe the experience of raising a child with a disability--to try and help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
Welcome to Holland
When you're having a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may even 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 have dreamed of Italy!"
But there has been a change in flight plan. They've landed in Holland and that is where you must stay.
The important thing is that they haven't taken you to a horrible, disgusting place full of pestilence, famine, disease and filth. It's just a different place.
So you must go and buy a new guide book. And you must learn a whole new language. And you meet a whole new group of people you would have never met.
It's just a different place. It's slower paced 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, Holland has tulips. Holland even has Rembrandt's.
But everyone you know is busy coming and going from Italy and they're all bragging about what a wonderful time they've 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."
The pain of that will never, ever go away, because the loss of that dream is a significant loss. But if you spend your life mourning the fact that you didn't get to go to Italy, You may never be free to enjoy the very special, the very lovely things about Holland. Their demands are small, but their love is enormous. These are the windmills, tulips, and the Rembrandt's of Holland. You won't find them in Italy."
I am very grateful for the blessing I have of being in "Holland". It has been one of the greatest experiences of my life, as difficult as it has been it has been worth every minute!!!
