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 your'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, Michaelangelo's David, the gondolas of 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!"
The stewardess replies, "There's been a change in the flight plan. We've landed in Holland and it is here 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 is just a different place. So, you must go and buy new guidebooks. You must learn a whole new language. You will meet a whole new group of people you would never had met. It is just a different place. It is slower-paced than Italy, less flashy than Italy, but after you have been there while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrants. 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 is 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 go to Italy, you may never be free to enjoy the
very special, the very lovely things about Holland.