Tuesday, April 21, 2009
I took Jessica to Holland for 3 days to see the flowers. She hates change, I guess you can see that on her face. What you don't see is how proud she was that she stepped out of her comfort zone. She pulled me towards the flowers, and even tried to pick one for me. It's so hard for her to go to a new place, but it's also good for her. She is not a flower among many common flowers, she is a rare beauty. She is an extraordinary beauty!
Welcome to Holland
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.
Emily Perl Kingsley 1987
Thursday, April 02, 2009
Every day is autism day for us. I forgot that today was International autism day. I wish there was no need for such a day. I wish the kids were all healthy. But today I kissed my girl, and I loved her just as much as I always do. She reminds me life is a gift. Her smile is a gift. Her laugh is a gift. I may never have a conversation with Jessica this side of heaven, but I'm willing to wait. I can not imagine any sound in heaven being half as sweet as the voices of the children who spent their days in silence. It will be a time for me to be silent...I wouldn't want to miss a single word.