I am so happy and grateful to have a mentally and physically healthy child but I must admit that I have frequently thought how my life would have been if she had a disability. Because there is no more painful condition than of a parent who watches the child struggling for life and acceptance. In a judgemental and often ignorant society, we have to remember that we are all different and to be human means more than to exist.
In 1974, writer and activist Emily Perl Kingsley had a son with Down syndrome and she was advised to institutionalize him as he was “an idiot, a handicapped”. She refused to give up her child and together with her husband tried everything they could to offer him a normal life and help him develop the skills he needed to function socially and meaningfully.
A few years later, she shared her experience of having a child with special needs in an essay that soon became very popular and was again and again used to reinforce faith to other families that had children with impairments or infirmity.
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 guide books 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 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 guide books. 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….and 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.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very 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.
© Emily Perl Kingsley