When we tell people of Orion's heart condition we get all sorts of responses. Some people say sorry, some people say you can't tell he had two heart surgeries, some people call us brave, and some people ask how we are able to do it. It is very hard to describe to people what its like to raise a child with special needs. Raising a child like this is all we know. Both of us have never experienced raising a new child. Tawny was 400 miles away for the first year of her nephew Vincent's life. Bo was only 11 years old when his youngest brother Eddie was born. To us what we know of raising a child is hospital visits, close monitoring of his feeding, breathing, medications every 4 hours, and constant worry only slightly relieved by echocardiograms. All this "extra stuff," we imagine is not far from raising a "normal" child. We are very happy with Orion and all the "special" things we have to do for him—we wouldn't trade it for the world. It's all normal for us, because this is all we know, but raising Orion is like nothing we expected. Here is a very good excerpt Tawny found online while doing research on cardiac babies.
************* copied from tawny's myspace blog **************
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 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 trip— to Italy. You buy a bunch of guidebooks and make your wonderful plan: 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 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 guidebooks. 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 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, 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."