There are so many things that we wanted to experience with our little boy, so many things we dreamed of and hoped for from conception. As the anticipation of Cooper's arrival drew near, our visions became more tangible. Thoughts of laughter, climbing trees, playing tag, building pillow forts, catching bugs and splashing in the rain. I could just see David and Cooper throwing a ball in the front yard, or taking in a baseball game. It was all very Normal Rockwell and wonderful.
The dreams of our growing family have held fast and may have even strengthened knowing what we had already overcome. Of course there are sleepless nights and awkward moments, but overall bliss. When it became evident Cooper wasn't reaching milestones, of course we worried, and devestated after receiving a fatal diagnosis. Our plane had changed course without our consent and was completely out of our control. In this day and age, yes, there are still diseases which have no cure?! We have numbered days with our son, a narrow crack in time to fill with experiences which will soon become memories. Cooper will not ever be able to build a pillow fort, but I can build it complete with strings of Christmas lights, and we can lay in it together. A realization hand in hand with the acceptance which allows us the enjoy the time we have, and a new family motto of living life to the fullest.
©1987 by Emily Perl Kingsley
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.
