What We Saw at Night - By Jacquelyn Mitchard Page 0,7

of us knew—nobody in his family had been afflicted. But half of the year-round citizens of Iron Harbor worked at the Clinic. The Tabors also owned a lot of other places in town, including the canoe and SCUBA rental places, some buildings, and the three restaurants that aren’t Gitchee Pizza. Gideon wouldn’t give in, although they tried to buy him out. He said he wanted to leave Gitchee Pizza to his son, even though he doesn’t have a son and he’s been married four times.

Sometimes, I had to ask myself why, though … why this whole community has grown up around the Tabor Clinic. These families are trying to buy time, basically. Time for what? Time to be with their kids, which used to strike me as selfish if the kid was suffering. Time for the kids to have a life, which is fine, I guess, until they get old enough to know what XP really means.

People talk about “genetic engineering” and “stem cell research” and “DNA repair” like it’ll be available next week at Walmart. But even if God or the government doesn’t forbid it, that stuff takes more time than we have. It takes longer than one short lifetime. Like, ordinarily, people would say to a girl my age: You have your whole life ahead of you. Sure, you have to grow up in Nowheresville, but someday, you’ll remember the huge storms and the loon’s lonesome moans and you’ll be happy you had that girlhood. And that would all be fine except the odds are, this fairy tale doesn’t apply to me. This is my girlhood and my everything-hood. You can’t blame us for wanting to carpe that diem if our diems are numbered.

I went back and forth on this subject. Sometimes, I thought I would be better off if I’d never been born. Sometimes, I thought I would hang on long enough for somebody to find a biological switch that could turn this thing off. There were some adults with XP in Iron Harbor, sure. But not too many. And we didn’t see them much. Juliet and Rob and I were among the older patients.

When my mood was especially black, I’d think of Dennis Ackerman. He was one of my tutors—super cute and the nicest guy. He taught me math and science three nights a week. He tutored other kids who couldn’t go to regular school, too, the ones on chemotherapy or recovering from mono or what have you. But having XP himself, he had a soft spot for us.

Four years ago, at the age of twenty-five, he’d decided he’d had enough.

That morning, my mom came into my room and woke me out of a sound sleep. The look on her face was so awful, in the truest sense, as though she’d seen a vision. I was sure my little sister had been diagnosed with some awful disease, too, or that Juliet, who was still skiing competitively as a freestyle jumper, was paralyzed. In a flat voice, Mom told me that Mr. Ackerman’s mother had found him dead in his car that morning. He had shut the garage and stuffed rags in all the cracks and just let the car run until he fell asleep. I asked if he’d left a note. My mom said he had, and it said that he knew this was a lousy thing to do to his mother and his “kids,” but he couldn’t stand the wait anymore.

I more or less understood that, too. But thanks to Juliet, I had long ago vowed never to go that route.

MY FRIDAY APPOINTMENT got off to a lousier start than usual because I forgot my umbrella. Mom and I fought the whole way to the clinic. She wanted me to be more serious about my illness. I figured I was as serious as I could get about something beyond my control. With my mom being a nurse, though, she was pretty vigilant. She was over-protective. Let’s be frank: she was crazy. She would have had me bubble-wrapped if she could have.

I was so absorbed in thought about our upcoming expedition that nigh,t I just spaced on the umbrella. It wasn’t raining, of course: I needed an umbrella the size of a palm tree even when the sky was clouded over, which was pretty often in Iron Harbor.

My mom had gone out early for a run with her best friend, Gina Ricci. In addition to being my godmother, Gina was also a nurse who specialized in