Ethan had XP, xeroderma pigmentosum, an incredibly rare inherited disease that left him extremely sensitive to the sun's ultraviolet rays. In the world, there were only a thousand known cases of XP. If you had it, you had it from birth, and you had it forever.
Shelby had first noticed something was wrong when Ethan was six weeks old, but it took a year of testing before he was diagnosed with XP. Ultraviolet light, the doctors explained, causes damage to human DNA. Most people can automatically repair that damage...but XP patients can't. Eventually the damage affects cell division, which leads to cancer. Ethan, they said, might live to reach his teens.
But Shelby figured if sunlight was going to kill her son, all she needed to do was to make it infinitely dark. She stayed in days. She read Ethan bedtime books by candlelight. She covered the windows of her house with towels and curtains that her husband would rip down every night when he came home from work. "No one," he'd said, "is allergic to the goddamned sun."
By the time they were divorced, Shelby had learned about light. She knew that there was more to fear than just the outdoors. Grocery stores and doctors' offices had fluorescent fixtures, which were ultraviolet. Sunblock became as common as hand cream, applied inside the house as well as out. Ethan had twenty-two hats, and he donned them with the same casual routine that other children put on their underwear.
Tonight he was wearing one that said i'm with stupid. The brim was curled tight as a snail, a shape Ethan cultivated by hooking the lip of the hat beneath the adjustable band in the back. When Shelby saw the caps being stored that way, she thought of swans tucking their heads beneath a wing; of the tiny bound feet of the Chinese.
She finished cleaning up the kitchen and then settled herself with a book on the edge of the driveway. Her long, dark hair was braided into submission, thick as a fist, and she was still hot -- how on earth could Ethan race around like that? He ran his skateboard up a homemade wooden ramp and did an Ollie kickflip. "Mom! Mom? Did you see that? It was just like Tony Hawk."
"I know it," Shelby agreed.
"So don't you think that it would be totally sweet if we -- "
"We are not going to build a half-pipe in the driveway, Ethan."
"But -- "
"Jeez. Whatever." And he was gone again in a rumble of wheels.
Inside, Shelby smiled. She loved the attitude that seemed to be creeping into Ethan's personality, like a puppeteer throwing words into his mouth. She loved the way he turned on Late Night with Conan O'Brien when he thought she was somewhere else in the house, to try to catch all the innuendoes. It made him...well, so normal. If not for the fact that the moon was riding shotgun overhead, and that Ethan's face was so pale the veins beneath his skin glowed like roads she knew by heart -- if not for these small things, Shelby could almost believe her world was just like any other single mother's.
Ethan executed a shifty pivot, and then a Casper big spin. There was a time, Shelby realized, when she couldn't have distinguished a helipop from a G-turn. There was also a time Shelby would have looked at Ethan and herself and felt pity. But Shelby could hardly remember what her existence had been like before this illness was flung over them like a fishing net; and truth be told, any life she'd lived before Ethan could not have been much of a life at all.
He skidded to a stop in front of her. "I'm starving."
"You just ate!"
Ethan blinked at her, as if that were any kind of excuse. Shelby sighed. "You can go in and have a snack if you want, but it's looking pink already."
Ethan turned toward the sunrise, a claw hooked over the horizon. "Let me watch from out here," he begged. "Just once."
From Second Glance by Jodi Picoult. Copyright Jodi Picoult 2003. All rights reserved. No part of this book may be reproduced in any form without written permission from the publisher, Simon & Schuster Adult Publishing Group.
The Kopp Sisters Return!
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