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 awhile and you catch your breath, you look around... 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 - Writer for Sesame Street and mother of a son with Downs Syndrome.
Astounding how people can have different circumstances happen in their lives, yet feel the exact way about a situation.
Being a single mother of a child with Cerebral Palsy that has multiple needs forces me to realize that I DO live in Holland and therefore I won't have the same kind of future as my family and friends that are in Italy. While my peers worry about what college their children will go to and if their children will marry, I worry about who will look after Juwann when I'm gone? And while they worry about paying for their children buy their first car or help pay for their wedding, I worry about securing enough money in a savings account for my son to live off of when he gets older. And while they are worrying about what sports to put them in, I am just praying for my son to stay healthy and pain free as long as he can...
You know when you feel in your heart that something was just meant to happen... well I stumbled upon this book called The Four Walls of my Freedom by Donna Thomson and man did I ever have one of those moments! Not only did I get this wonderful quote from Emily Perl Kingsley above, but I'm learning to think differently about life in general. Donna is an extraordinary woman and author who has built a second career as a disability activist. And through her story, I feel like I am reading my own. Although reading this book has sent my emotions on a roller coaster ride, I cannot express how much I have learned from reading this book already and I'm only half way through it! She has not only opened my eyes to the possible future for my son but gives great resources that can aid me with this.
I may never know what Italy is like but I truly do love my Holland!
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