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This book was five years in the making, so there are a lot of people to thank. Thank you to Jolene for reading this book about a billion times. Thanks to the support of my family and friends. My editors Cassie and Wendy for making this thing shine.
Thank you to Rachel for believing in this story and supporting me through my first trek through the submission trenches. Thank you to all the guidance and support from Sharon, whose brutal honesty and genuine straight talk always makes me feel like the luckiest writer ever.
Finally and most importantly, thank you to Gina at the Children’s Cardiomyopathy Foundation for taking the time to answer all my questions and provide resources. This book would never have made it out there without your invaluable help and patience. That’s why half of the profits of this book in 2018 will go to their foundation that helps support family’s and search for a cure.
Friday, April 19 • 2:36 PM
Evan
Vibrant light glitters behind my closed eyelids like a meteor shower as I run my fingers from the old scar on my breastbone to the fresh incision under my collarbone. My t-shirt snags the gauze tape, and I wince in pain.
A soft clucking sound directs my focus to my mother, sitting in the corner of the small sterile room at the Children’s Hospital of Philadelphia. Her thin lips are together in sternness, but I see through her concerned stare. A familiar insincerity swims through her deep brown eyes. She doesn’t want to be here. Not alone. Not with me.
Mom catches my gaze and taps her collar.
“Evan, darling.” Mom’s eyes flick back down to her magazine, and I drop my hand from the t-shirt emblazoned with the logo of my favorite band. “Stop touching it.”
It is the four-inch long incision along my collarbone where my Implanted Cardioverter Defibrillator was implanted two days ago—or ICD if you don’t want to waste twenty minutes saying the whole thing. The device makes sure I don’t die if I have another heart attack, but there’s also a pacemaker built in for a more everyday sort of reminder for my heart that it’s supposed to beat, like my old track coach clapping his hands every time I run by (Com’on, Com’on, Com’on, Jordans, we don’t have all day here. Get that blood moving).
I don’t have time to remind Mom she really didn’t need to fly in from Iowa just to cluck her tongue at me when the door opens and a young male nurse enters.
“Hey, Evan,” the nurse says, plucking gloves out of a plastic box on the wall and sliding them onto his hands. “I’m Lane. We’re going to check a few things before the doctor comes in, ‘kay?”
He has a typical nurse voice—the tone that says he’s used to talking to kids but trying not to talk down to me because I'm seventeen. But as my eyes do a pass over of his blue scrubs, tall lean frame and dark features, he does not look like a typical nurse, and the more I stare at him the more my cheeks flush.
“I need you to breathe in deep for me, Evan. Nice and slow and steady,” my nurse says as he slides his hand up the back of my too-loose Lemming Garden t-shirt, pressing the cold stethoscope under my shoulder blade. An odd ripple of goosebumps travels out from the cold metal.
“That band is playing at the Aftershock tonight,” he says, nodding to my shirt, and I grin, sucking in a long breath.
“I know,” I say with a small shrug. In truth, I know everything about Lemming Garden. They are my reason for being. I plan to be at that concert.
Lane leans closer and shifts the stethoscope higher, his fingers right above the clasp of my bra, and my breathing shallows. I forget about the band as his lips count my heartbeats, and I swallow the foreign jump in my stomach. Little stars explode through my vision, like every time my blood tries to move too fast, and I let out a slow calculated breath.
“Whoa.” He chuckles, and my cheeks heat up further. “Slow and steady. Emphasis on the steady.”
My mom, who has been patiently reading her garbage magazine about “fat” celebrities and the men who cheat on them, springs out of her chair. She’s sitting by my side before I let out my next long breath.
“Is she okay?” Mom’s expensive foundation does a great job of masking her frown lines as her eyebrows come together. The expression is one I’m familiar with—half worried, half stoic, like she’s preparing for me to drop dead. This is totally possible given my condition, but I don’t think she’s worried about that as much as she doesn’t want me to die while she’s around. I’ve heard my parents fight about my uncertain future more than once (I’m sure half the neighborhood heard it by the little round mouthed pity shrugs I got from random people). I used to be tormented by my mortality, but the brain is an amazing thing, and at some undefinable point in my life I couldn’t think about it for one second more. Like a shooting star, it just poof... disappeared.
“What’s wrong, Evan? Are you dizzy? Should I call your father?” Mom glances over her shoulder a thousand times. Her gaze flicks around, and her thumb taps blindly on her cell phone. I wonder what possessed my dad to leave her here with me, even if it was for ten minutes to go get coffee.
I breathe out in annoyance and catch the little knowing smile on Lane’s lips. Please, Sweet Jesus, don’t say anything to my mother.
The last time Mom and I talked about boys, it was right after my twelfth birthday and my first period. Mom wrung her hands in her lap. That’s really all I remember because I couldn’t stop staring at them. Eventually, I stood up and walked away without ever saying a word. She never brought it up again. Granted, soon after that I went into cardiac arrest, so we had bigger family issues than my virginity.
“It takes a little while for the ICD’s wires to implant properly in her heart. You should start seeing a steady improvement in her arrhythmia in a few weeks. The doctor mentioned all this in the post op, right?"
Mom tucks waves of hair behind diamond-studded ears and shakes her head. Her eyes are glazed, making it clear she doesn’t know what he’s talking about.
Not only did the doctor explain in excruciating detail how the ICD pacemaker will work to regulate my slow heartrate and buy me some time in a crisis, he also made sure I understood (complete with the tilted head stare down popular among adults of authority) that this device tucked beneath my skin is not a fix. It is merely a tool to help me extend the life of this heart before I will inevitably have to get a new one. Mom missed that part, too. She always misses that part.
“I wasn’t here for the procedure. I flew in late, I mean, I had—” Mom stutters. “Her father usually handles these things.”
“The recovery on this procedure is usually fast, and she’s been monitored closely for the last forty-eight hours with no complications. A couple days of rest and she’ll be back to her regular life. Your daughter is a strong woman, Mrs. Jordans,” Lane adds.
Both Mom and I tense up at the fact that he called her Mrs. Mom hasn’t been a Mrs. anything in years. Not since I was diagnosed. Not since she walked out on us for a guy ten years younger than her named Robbie who “understood what she was going through.”
“Yes, but your father said the nurses let you sleep in this morning. You’re supposed to take your medication at seven-thirty. Why he didn’t wake you himself is just...” Mom’s squeaky, flustered voice falls out in a jumble of words, and I reach out my open palm toward her.
“Mom. I’m fine.” I mean it to sound comforting, but it’s laced with the exasperation I so often feel whenever she’s around. She insists on coming to all of my appointments but refuses to learn the specifics of my condition. She can’t bail on our family because she doesn’t want to deal with the hard parts, and then blame Dad when something goes wrong.
The door opens, and like he’s my psychic savior, Dad enters to rescue me with two huge paper cups of steaming tea. Following Dad is my ever-present best friend, Nat, who immediately blows my cover by zeroing in on the nurse. Her thick, dark eyebrows shoot straight up as her mouth opens in a gawking, gap-toothed grin. She mumbles a few words in Spanish that are wholly inappropriate given the fact that my dad is standing right next to her. She’s lucky I love her more than I love my own flesh and blood sister.
“Hey Jordans, why is your face so red?” Nat wiggles her brows as the nurse tilts my head to the left to check my Carotid artery.
His expression stays solid and unreadable, but he’s a cute male-nurse in a children’s hospital; I guarantee he’s used to this—seventeen-year-old virgins with chronic heart conditions wondering what it would be like. It’s not like I obsess about it, but every once-in-awhile in the natural course of my life, the thought comes up. Hard as I may try, it’s difficult not to wonder...to not be a slave to biology.
“Why are you still here?” I mutter to my best friend as she flops in the chair, fluffing her messy bun of dark hair and picking up Mom's magazine. The nurse laughs to himself as he fits the blood pressure cuff over my arm.
“Because you love me,” she says digging through her huge fake leather purse, slowly revealing an envelope and my chest tighten. “And because you need me. You wouldn’t know what you’d ever do without me.” Her grin grows, and I’m sure my blood pressure is spiking. She found tickets to the Lemming Garden concert. Like she promised she would. My face is stretched in this crazy smile, and I forget everything. I forget the ICD. I forget my hot nurse. I forget that my parents hate each other and my life sucks.
I tune out everything except my best friend in the whole world as she slyly takes out two shiny tickets. We may not agree on boyfriends, but we both definitely believe that music is life, and our favorite band is playing tonight. Nat didn’t think it was a good idea at first, but it was pretty easy to convince her I felt good enough. When people hear the word Cardiomyopathy (and actually know what it means) their first thought is one step from death in a hospital bed. Sure that happens, but there are people who live their whole lives with it and only take a few pills and don’t do any crazy sports. It’s not like I’m made of glass; it’s more like I’m on a timer and no one is sure how much time is left before shit goes south.
I am a supernova.
Nat rubs the tickets together like they’re money.
I laugh out loud, and in the excitement I’m hit with a wave of dizziness, my body wobbling.
“Easy, Evan,” Lane says, steadying me with a hand on my back.
Natalie’s dark eyes widen, and she shoves the tickets back into her bag, mouthing, “Sorry.”
“I’m okay,” I assure Lane and my now hovering father. I forgot Dad was even in the room.
“You shouldn’t have let her sleep in this morning, Chris.” Mom’s tone startles us all, but Dad’s shoulders are instantly tense. The staff let me sleep in, not Dad. Mom knows that, but she has that look in her eye she gets when she wants to fight. Dad’s attention is no longer on me, and mine no longer on those concert tickets. I shoot Natalie a desperate glance. One I give her a lot. The one that says save me, you are the only sane person in my life (which is saying a lot because Natalie is far from sane).
“She was seeing spots earlier, too.” Mom puts her hands on her hips. “The nurse was checking her lungs, her eyes went all weird like they do, and she said she took her meds late this morning. You can’t leave me alone here if you aren’t taking care of her.”
Of course this is about her.
“She’s fine, Mr. J.” Nat shifts in her chair, her loud voice, while bored sounding, takes over the entire room. She’s going to save me. “Evan just thinks her nurse is hot. It’s no big deal.”
"Oh. My. God," I say, flopping back onto the hospital bed with the blood pressure cuff still around my arm. When I get home, I’m finding a new best friend. My head hangs upside down, a little off the edge of the thin mattress, and immediately I see spots.
I attempt to cover my face with my forearm, forgetting the incision under my collarbone. Pain explodes out from the stitched skin, but I suck the hurt back into my chest before it escapes my lips.
"Shit," I mutter when the pain won't go away. The edge of my vision turns to shadows. "Shit, shit, shit."
I try to roll over, to breathe slower, but instead of slowing the air, I hold it. My heart slams as my body gives off adrenaline to deal with the pain. My vision blurs further, and the dizziness takes over, shadowing my world in a thick hazy blackness. Like a starless night.
2:57 PM
When I fade back in, Dad is sitting next to me, rubbing my back. Lane helps Dad shift me in the hospital bed so I'm comfortable, and he begins to check all my signs and signals again. He only seems slightly irritated that he has to repeat his checklist.
“I’m fine,” I say, but my throat is dry. Sometimes when I pass out I make these noises that Nat says sounds like a cross between a pig snort and a muskrat with its foot caught in a trap. I have no idea what that sounds like (and I’d guess that she doesn’t either). All I know is that my body isn’t getting enough oxygen, and when I come to, it feels like I inhaled a sandbox.
Dad hands me the hot tea he brought, and I take a sip, letting the warmth spread through my chest and wet my pasty mouth. He squeezes the fingers of my free hand, glancing over at Mom. She’s retreated to the back of the room, a lot paler than she should. Fainting is not a new thing for me. Even when I was little I had, what is politely called, a delicate stomach.
“Maybe I should cancel my appointments. Then I could fly home with you tomorrow instead,” Dad says with that wobble of doubt that burns through me like a meteor. It’s the voice that says, ‘I don’t want to do it, but you give me no choice, Evan’ and I can’t stand that voice. When my mom acts like I’ve ruined her life by getting sick, I get mad, but when Dad does it, I can’t handle that expression. I feel like maybe I did it on purpose, even though that makes zero sense. You can’t tell your heart to break.
“No, Dad. I’m fine. I should know better than to move like that. I have to get used to this thing.” I pat my collarbone and wince at the pain where the doctor cut open my skin and stuck in the machine that beats my heart. I have no idea if I’m coming across as calm and confident, but I hope so. Dad cannot stay in the city with us tonight. It will ruin everything we’ve planned. He has to believe I’m definitely well on the way to recovery.
3:12 PM
Dad stands awkwardly in front of the hotel, talking to Mom and trying to sound civil. The air isn’t cold, but it may as well be eternally winter when those two are in the same place. I can hear the ice in Dad’s voice when he speaks. He still hates her for leaving, for leaving him with me. He blames her. She blames him.
“They’ll be fine, Chris.” Mom’s hands on her thin hips tighten with every word. “It’s one night. The doctor said she can’t travel until tomorrow. He said—”
“I know what he said, Janine. I was there.” Dad puts his hand between them and then pinches his nose with his fingers. Ouch. Even I can see that was a dig.
“Well, stop treating me like I have no clue what I’m doing.” Mom’s voice is high pitched, like it usually is when she talks to Dad. His eyes snap up to hers in a flash of anger, but he doesn’t say anything. He never says anything.
We stand in limbo for a long time, the cars rushing by on the street making me more and more tense with every passing whoosh. I want to be inside now, my parents on opposite sides of a very thick wall and not staring each other down. Nat loops her arm through mine.
“We’ll be totally fine, Mr. J.” Nat’s voice floats over the artificial sounds of the city, and my parents look over as if they suddenly remembered I’m standing right here. “My mom gave me her laptop and her Netflix password, and there are, like, twelve seasons of Supernatural to watch.”
I bump her hip with mine. “We’ll be sweatpants-and-glasses perfect, Dad.”
Dad’s face softens, but he rubs his tired eyes, squinting into the sun. I let go of Nat to wrap my arms around his waist and inhale his Dad smell—comfort and safety. He places his hand on the back of my head in his signature one-armed hug, kissing my hair. “I know. I just wish I didn’t have to fly back today. It’d be nice to get to spend time with you. Hang out or whatever it is you do.”
“It’s okay, Dad. You can’t keep cancelling on your patients. I totally get it.” I put the most genuine smile on my face but have no clue how it comes off. I hope he doesn’t see through me. But saying I don't want you to stay because I’m sneaking out to go to a concert and you're too good of a parent for me to get away with it probably won’t get me far either.
“Okay, but listen to your mother, and no hot tubbing. Keep an eye on your heart rate. Make sure you set your phone. I’ll call in the morning to remind you to take your medication. Do you have your pill box?” Dad talks as I lightly push his chest toward the cab, my body bent a little and arms completely outstretched, as if I were getting a truck out of a snowbank.
“Dad...” I say. “Go. Seriously.”
Dad opens the cab door, getting in. “Evan?” he calls after me, and my eyebrows go up.
“Yeah?”
“I love you,” he says in a way that brings me closer to snapping than anything else ever does. Dad says he loves me like it’s the last time he’ll ever say it. I feel the words float from him in a protective force field, wrapping me up and squeezing tighter and tighter. I can’t stand to hear him say it like that, and I still can’t say it back. If I say it, it might come true, so I always answer the same way.
“It’s my glue,” I say automatically. I told him once under a heavy dose of morphine that his love was like the glue that held my heart together, and as long as he loved me, I'd be okay. It's dumb, but it stuck.
Nat links her arm through mine. Dad lets go of my hand, worry touches his features. He glances at Mom, and I see him changing his mind, forcing me to close the cab door on him, smacking the window. I mouth, “I’m fine” before he drives away, but my stomach rolls around as he drives away.
“Hey space cadet, you coming?” Mom tries to be funny, but like her parenting skills, she’s not a natural. Nat and I follow her into the stuccoed franchise hotel that screams middle class trying to pass off as rich. She checks us in and hands me my small wheeled suitcase.
“You’ll meet us for dinner,” she says. I don’t want to hang out with her and her beef-cake boyfriend. “It wasn’t a question, Evan. We’ll be having dinner in the restaurant at five. After that we’ll be going to a ballet at the Philadelphia Conservatory of Dance. I trust the two of you will be fine. A relaxing night in the hotel with that nature show...”
“Supernatural, Mom.” My heart beats a little faster now that we’re talking about tonight. “And yeah, a lazy night.”
A sinister grin cracks Nat’s face as she quickly glances up at the fancy faux-chandelier above us, and my mind is flooded with images of our night in Philly. Of those tickets that I’m sure Nat had to threaten people to get ahold of. I’m glad Mom has the worst Mom instincts in the history of Moms. I elbow Nat and clear my throat.
“Totally lazy,” she adds.
Mom shifts her gaze between us, her Botox eyebrows not betraying the thoughts that play behind her eyes. For a second, I think she’s onto us, but she settles into a satisfied smile. “Good. We’ll meet at five then, and don’t be late, we need to leave for the ballet at about six. I’m going to go get a massage; it's been a long day.” She spins and clacks away on her high heels, wheeling her designer suitcase along behind her as if she were the most important person in the universe.
Nat chuckles. “I love your Mom, Jordans, but man is she dense. I thought we were busted.”
I look over to my friend, her larger than life eyes are full of mischief. Mom totally should have picked up on her guilty expression. Mom’s not dumb; she’s selfish. There’s a big difference, but both can make you oblivious.
“Me too.” We make our way to the elevator at the end of the hall.
“You think she’ll catch on at dinner?” Nat leans forward and presses the up button, her eyebrows furrowed in thought.
“Nat, this is my mom we’re talking about...Just start talking about her, and you’ll be fine.”
The elevator dings, and I flatten my palm to my chest. My other hand grips tighter to the handle of my suitcase.
“I can’t believe we’re sneaking out,” I say as the doors slide open, and I feel like freedom pours through me with thoughts of a parentless night in the city.
Nat groans, shifting her suitcase from hand to hand.
“I can’t believe we have to wait three more whole hours to ditch this place! Lemming Garden, EJ. Lemming-frickin-garden.”
I squeal as we enter the elevator and immediately grab for her bag. I’m almost frenzied now that we’re alone. “Let me see them.”
Nat reaches into her bag for the two long tickets stamped with a logo that says, The Aftershock. She wiggles her eyebrows, and I feel like I could kiss her. I have so many expectations that are tied to these tickets, yet at the same time I have no idea. Anything could happen. This must be what freedom feels like—high hopes and deep mysteries.
In this second, I don’t care about anything else that’s ever happened to me as I run my fingers over the smooth, shiny black letters that say Admit One.