When my son (who has has CP and
CVI) was about a year old, I brought him into our local Verizon store to get our cable box replaced. At the time, Dylan was still having a very difficult time dealing with new places. He would often curl up in on himself so he could close out the outside world he found so overwhelming. We called it "doing the armadillo".
The person who waited on me smiled at both myself & Dylan in a kind & knowing way. We quickly began talking about our children (which is unusual for me as I am a very private person) and I learned that she had a special needs child with a rare & devastating condition. I found myself telling her not only all about Dylan, but also how I was feeling. I had friends with children the same age as my son & I expressed the difficulty I was having relating to them and the lives they were living with their "average" children. I told her I felt like I was living on a completely different planet than my friends & their children. She smiled & told me "No, honey, you are just living in Holland." She told me to hang on a second so she could explain. She quickly printed out a sheet of paper for me & this is what was it said:
WELCOME TO HOLLAND
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
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.
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I am still so grateful to that incredibly kind woman who recognized a lost & confused newcomer to Holland & welcomed her to a beautiful world she no longer felt alone in.
