Sunday, April 26, 2009
Such beautiful babies.
The cell rang and "the babies" both simultaneously startled. (Okay, the babies are 8 and 5, but I’ll always think of them as my babies…Just keeping it real....) I glanced in the rear view and smiled back at them, lifting my hand in a goofy wave.
The arch of my hand, the trajectory of the back and forth motion … it was somehow familiar.
A warm feeling swept over me.
It was my dad’s wave. The arch of the hand was his. I could see him in his button-fly 501’s and his flip flops, waving that stupid wave. My eyes welled and I gazed upward. It felt good to catch a glimpse of him. He’s been gone so very long.
That’s how old he was when I stood in the cemetery in San Jose. He had turned forty just the week before. He’d been diagnosed with brain cancer eleven years earlier. The doctors at Stanford had worked hard to keep him with us over the last decade. Hospice had finally stepped in.
And now, I focused as hard as I could at the wood grain of his casket.
It was oak.
And he was in there. My handsome, eccentric, engineer dad in his best suit. Looking so perfect. He had just been playing jazz chords on his treasured baby grand the week before. And now this sturdy oak casket was about to be lowered into the California ground.
I swallowed hard, trying to conquer the lump in my throat.
I looked up at the blue sky and breathed in. His mail was still in the mailbox. His car parked in the garage. But somehow I was supposed to convince myself that he wasn’t coming home.
Almost twenty years later, I named my son Jack. After my dad, of course. His legacy. And of course that Jack, much like his grandfather, has led me down the path of love and joy and unanticipated fear and worry.
I’ve memorized moments with him too.
I vividly remember staring at his bassinet stationed by my hospital bed, wondering what this little boy would teach me. The pediatrician walking into my hospital room the following day, closing the door behind him and clearing his throat.
"Ms. Ursitti, we need to talk..."
His mouth spoke words I couldn't quite digest. Cardiologist.. Testing. Possible transfer.
And so I remember spending that first week shuffling up and down hospital corridors, c-section staples aching, going to the special care nursery to nurse him. Sitting in bed with him when he was just three weeks old, watching him smile at his sister. The unanticipated moment a couple of years later the neurologist scrawled the word “autism” in Sharpie across his medical record.
The best memories, of course, are the joyful ones. The moment he said “mom.” The moment he spontaneously stuck a chicken nugget in his mouth and actually ate it. The first juicy kiss he planted on my cheek just a couple of months back. The laughter. And there's been so much.
Still, it’s been a tough road for him. Like his grandfather, he’s spent a lot of time in rectangular examining rooms with fluorescent lighting. We’ve done the MRI’s, read the lab results, hoped and prayed. The white coats, for the most part, have been kind to us. But they can’t even begin to tell us the biology of his autism. They do the best they can, based on the information they have.
And I wish for more.
I wonder how long it will take for us to learn the biology. Science seems to move at the slowest of paces, lumbering along without any sense of urgency.
Just this past week I read an article in the New York Times that reported the death rate for cancer, adjusted for the size and age of the population, dropped only 5 percent from 1950 to 2005. And that is after Richard Nixon waged “war on cancer” and billions of dollars have been invested in cancer research.
Two decades since that beautiful day in San Jose when I stared at that damned casket. Little progress.
Is it hopeless? Is the complex group of diseases we call cancer something we will never figure out? And is the complex neurological disorder called autism that somehow mildly affects some, while devastating the well-being of others, something we will never be able to quantify somehow?
Call me crazy, but I say not by a long shot. Human beings prevail and progress. It’s part of our makeup. We must find the answers. We have to know.
So hope remains eternal. And this week, a much-needed glimmer came my way.
When I first heard about the Cures Acceleration Network, I thought about the oak grain and the smell of that Sharpie. I thought about the worry that clouds the future, no matter how hard I try to pretend it will all be okay.
I feel validated to know that I’m not the only one who worries about the speed of science.
And the needs of those who suffer.
Who deserve to live.
And play jazz chords
And to know their grandchildren.
Who deserve to speak.
And eat chicken nuggets.
And to know their grandparents.
Who deserve a life with fewer white coats and fluorescent lights... and more blue skies.
Who need some help, not later but now.
Call me a dreamer... It’s the ultimate compliment.
If you're a dreamer too, please visit http://www.specterforthecure.com/.
Saturday, April 11, 2009
She's eight, but she has a lot on her mind, that one...
Dear Barack Obama,
When you said the thing about the Special Olympics, it really hurt my family. My little brother, Jack, has autism and we felt like you made a joke out of him. He's a great person. Sure, he has autism. But he's the same as anyone else in the world. I think he's the best little brother in the whole world and he shouldn't be made fun of.
I am in third grade and my little brother gets notices about kindergarten but he can't go to my school. A lot of people in public make fun of him, and it makes me feel bad. My brother doesn't even seem to understand that people think that he's dumb or stupid. He is practically normal, but it's just something in his brain that makes him different.
Really, he's not dumb or stupid at all, but he is unique.
Now a lot of people think it's okay to make fun of people with special needs. But I think that people with special needs are strong, because they have a hard time learning. But they're trying their best.
We are stamping and sealing and sending this on. Special needs siblings have so much to say.
To read more about perspectives from siblings of kids with autism check out the new book from Ouisie Shapiro called Autism and Me. I'm so proud to say that Amy contributed to this beautiful book. I think I'll be sending a copy of it along with Amy's letter to the President.