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
Michalangelo 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 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 a horrible,
disgusting, filthy place full of pestilence, famine and disease. It's
just a different place. So you 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 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 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 will never be free
to enjoy the very special, very lovely things about Holland.
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