How do you explain to someone what it’s like to get a diagnosis and come to terms with the fact that your child isn’t going to be like other children? That your child is not considered neurotypical?
Through the years I’ve tried to express the feelings, the challenges, the fear but I never felt like I quite captured it. Years ago, a friend shared with me a poem by American author and social activist Emily Perl Kingsley. She wrote this in 1987 based on her own experiences with her son Jason, who was born with Down Syndrome. While it doesn’t explain everything, I’ve always felt it was a pretty good snapshot of what it’s like to be on this journey.
Welcome to Holland
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 lie 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 for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”
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.
by, Emily Perl Kingsley
This may not be the journey that I had planned or expected, but I do love my guide.