I am often asked to describe
the experience of raising a child with a disability - to try to help people who have not
shared the 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. Michelangelo's
"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 flight attendant comes and says,
"Welcome to Holland."
"Holland?!" you
say. "What do you mean, Holland? I signed up for Italy! I'm suppose
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 of pestilence, famine and
disease. It's just a different place.
So you must go out and buy
new guidebooks. 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 a slower paced than Italy, less flashy than Italy. but after
you've been there for q 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 and going from Italy, and they're all bragging about what a wonderful time they had
there. And for the rest of your like, you will say, "Yes, that's where I was
suppose to go. That's what I had planned.
And 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
in mourning the fact you didn't go to Italy, you may never be free to enjoy the very
special, the very lovely things about Holland.