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 guidebooks 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 some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy a new guidebook. 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, 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." The pain of that will never, ever, go away, because the loss of that dream is a 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.
Written by Emily Perl Kingsley
And it really is so true. Okay, so I really did have to mourn the 'loss' of the baby I thought I was going to have (a boy. His name was going to be Noah. I was convinced), a baby who was 'perfect' and had nothing wrong with them. That was my Italy. But instead, I ended up in Holland. With a little girl, Everleigh. 10 fingers, 10 toes, 2 eyes and ears etc. She's got all the bits and pieces she's supposed to. AND, she has a little bit extra. That third copy of the 21st chromosome. You know what? I was so upset that I ended up in Holland when I was expecting Italy, that I never stopped until recently to realize that there is nothing wrong with Holland. There are similarities, there are differences. But the most important part is that they are both geographical locations. That is the most important similarity of all.
Everleigh may not be "typical". She has 47 chromosomes instead of 46. She may have to work a little harder to achieve the same milestones that other kids do. But she'll get there. And really, what difference does the journey matter when the end result is the same?