Midnight Sun(10)

“Oh my God, my notebook!” I gasp, my heart racing into full panic mode. “I think I left it at the station. Every song I’ve ever written is in there! Can you go get it?”

“I would, but my parakeet died, and I have to sit shiva for him…”

I smack her on the thigh. “Seriously. Please.”

She laughs. “Of course. I’ll pick it up this afternoon.”



Once Morgan takes off, I go back to wallowing in regrets of what might have been. Damn you, Charlie Reed. If only you’d been a total disappointment, I wouldn’t care what an ass I made out of myself in front of you last night.

Unfortunately, you were even more awesome than I’d imagined.





6

Two disconcerting things happen later that day. First, I catch my dad sneaking back into the house after going to see my XP doctor without me. Again. This is not the first time it’s happened.

“Dad!” I yell, rubbing my eyes and sitting up in bed when I hear his sneaky, creaky footsteps on the landing outside my bedroom. The clock reads six PM. The appointment with my XP doctor was at four. We were supposed to go together. WTF?

“Did you turn my alarm off?”

He hangs his head. “You just looked so peaceful sleeping there, and I thought you were probably overtired from playing at the station last night, so I made the executive decision to let you sleep in…”

“More like you can’t deal with me going out in the day, ever, even though we know how to take the appropriate precautions,” I say, raising an eyebrow and giving him an accusatory look. “Not to mention you hate when Dr. Fleming tells it to me straight.”

He gives me a helpless little shrug. “She’s such a pessimist! You don’t need to hear negative messages, not when everything is going so well in your life.”

What life? I think. But that’s the kind of thing I would never say to my dad.

I pat the edge of my bed. He stares at it a bit, then reluctantly sits down. He looks like a little kid who got caught with his hand in the cookie jar.

“So what did she say?” I demand.

“Nothing, really. Wanted to know if there were any changes in your motor function or if you’d been exposed to the sun. Of course I said no.”

I roll my wrist at him, like, I know there’s more, now out with it. “What about the study at the University of Washington?”

A big smile plants itself on my dad’s face. “It’s coming along! Anytime now!”

I know what this means, if only because it’s happened so many times before. People aren’t exactly flocking to fund research for a disease that affects only one in a million people. This drug trial most likely already ran out of money and therefore won’t even reach phase two, which is when I’d have an opportunity to apply to be part of it. Or if by some miracle the study actually receives more funding, it would be even more of a miracle if I got chosen to participate in it. The futility of living with a disease no one cares—or even knows—about makes me want to scream. But that would be even more futile. It’s an endless cycle of futility I’m dealing with here.

“Don’t worry, I’m not holding my breath,” I tell my dad. And then, because I want to knock that fake smile off his face, I say, “I’m sure Dr. Fleming also reminded you that any sun exposure at all will be the death of me and that kids with my kind of XP rarely live past twenty, am I right?”

Dad’s face falls. “Of course not,” he protests. “And if she did, I certainly wouldn’t listen. Maybe you have a disease that affects one in a million, Katie, but you really are one in a million. None of those statistics apply to you. We’re going to beat this thing. Together.”

“Right,” I say. But nothing ever changes when it comes to XP. There’s not even a ray of hope. No new treatments. Just “stay out of the sun until the disease somehow finally gets you.” I’m a prisoner of my genetic code, which sucks totally and completely.

“Katie, promise me you won’t ever give up hope,” he says, his voice cracking with emotion.

I look up and see Dad struggling to keep his composure. I wish we could actually talk about how little time I statistically have left and everything I want to accomplish during it. Come up with a game plan for quality of life, knowing that quantity is something we don’t have much control over. But he just doesn’t seem capable of it. I wonder, not for the first time, how my mom would’ve handled all of this. Since she died a few months before I was diagnosed, I’ll never know, which means I’ll always wonder. Would she have been better at facing the facts?

I don’t like to think about it either. My expiration date, that is. Or what dying might be like. But I do sometimes. Of course I do. Usually late at night, when it’s darker than dark and I’m the only one awake—in my house, on my block, in the city—I wonder if death is somehow similar and just as lonely. Like, just you, in the dark, awake and aware. I sincerely hope not, because that would be unnecessarily cruel. Like living my same life all over again, only for all of eternity.

So I force a smile on my face instead, and say, “You know I’d never do that, Dad. We’re fighters. I’m not going anywhere.”

He tries to smile back at me, but the color is still drained from his face, so I add, “Come on. You couldn’t get rid of me if you tried.”