I still feel so blessed at being granted a front row seat to the Ben show. I know as he follows his path out of our theater he'll gain new fans and critics of his dramas and comedies. He'll have new directors and managers in unforeseen roles. I wish him moving monologues, a cast of supportive friends, and maybe one day a brave and beautiful leading lady. I wish him adventuresome scenes, bombastic final acts, and glowing reviews. I wish him more.
* Welcome to Holland is a poem well known to parents of children with special needs. I'd just like to add that having one kid in Holland and two in Italy requires extra finesse and there are cultural casualties, but that's a post for another midnight.
WELCOME TO HOLLAND
byc1987 by Emily Perl Kingsley. All rights reserved
Emily Perl Kingsley.
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.
God Moment added evening of May 3rd: I wasn't able to go to Mass with the family in the morning because I was teaching Sunday School, and then Jason got called in so I couldn't go to the eleven, so I found myself sitting down in church this evening to the realization that it was the 6 o clock hour on the 3rd of May, the moment when Ben pulled his Lazarus impression thirteen years ago. Whenever we pass that spot on the planet in its orbit, I get weepy. So I was boo hooing my way through Eucharist, kicking myself for sitting in an exposed pew where I couldn't hide from my tears, when the second communion song began. It was the hymn Jason and I have sung to Ben at each and every hospitalization, a tradition we began the night of May 3rd, "Seek Ye First." Ask and it shall be given unto you, seek and ye shall find, knock and the door shall be opened unto you. Man must not live by bread alone, but by every word that proceeds from the mouth of God. I know all these things to be true.