Ryan pleads exhaustion and I help him back to his room. Refusing to go back to my room, I hunt for space in the Home. I end up in the game room and spend the rest of the afternoon playing video games that Mom won’t let inside our house.
Without something else for me to focus on, the fear of surgery surges back to life, dogging my steps, pelting me with a steady stream of panic.
Trust people. I pull out my phone and open up to my conversation with Jack. But I don’t want to ruin the surprise, so I flip open to my conversation with Brooke.
Ellie
What time is Jack performing?
Her response comes before I can slip my phone back in my pocket.
Brooke
YOU’RE COMING!?!?
3PM
TELL MEEEEEEEE
Well, now there’s no good way to get out of this. Trust people.
Okay, here goes.…
Ellie
Maaaaaaaybe
So it’s not an outpouring of my darkest fears, but it’s more than I would have given her a week ago. In a rush, I lock my phone and slip it in my pocket.
This is gonna be all right.
I take the elevator back to my floor—not willing to risk the stairs and set my lungs off. I can’t give Mom any reason to think I’m not well enough to go to Morelands. In the kitchen, families move around one another, fixing dinner. Ryan sits at a counter and smiles when I start making tea.
“Are you following me?” he asks.
“You caught me,” I say, and we both laugh. “Just trying to rest up before tomorrow.”
“I can’t believe Luis got doctor approval for this.”
“Don’t tell me you’re backing out now?” Luis has provided detailed instructions that can be rivaled only by Caitlin’s. I wouldn’t put it past Luis to drag us kicking and screaming to the bus. Plus, big cancer or little cancer—it’s still cancer. You do the thing.
Ping! My phone goes off and I see it’s a message from Caitlin.
Caitlin
Did you tell your mom yet?
Ellie
Yes.
I lie. What’s the harm … Caitlin won’t—
Caitlin
Liar.
Eleanor
I will pull the plug.
Ellie
What kind of proof do you want?
Caitlin
Don’t worry, I’ll know.
I grimace.
“What?” Ryan asks.
I fill him in on the whole Caitlin thing. Strange how much I enjoy just telling him things.
“If you get out of this, I want out of this.”
“What is so wrong with going?”
Before he can answer, a woman who I guess is his mom steps in. She has the same thick black hair that’s cut in waves to frame her face and wide-set eyes as her son. “Ryan, who’s this?”
We exchange glances. It’s one thing for our friends to know, but parents? That’s some dangerous, maybe-this-is-permanent territory. His mom waits for someone to speak.
“I’m Ellie,” I finally say when it’s clear Ryan isn’t going to step up.
“Nice to see Ryan making friends, would you like to join us?” She motions to the heavy, well-used dining table. I look to Ryan for a clue—does he want me to stay?
“If you don’t have plans,” he says with a shrug.
“Sure,” I say. Hospital friendships are short-lived, might as well enjoy it while it lasts.
“Ellie?” Mom calls, and comes into the kitchen. Our moms square off.
I fumble my way through introductions, but Mom turns on her hospital charm. The one that she uses to con nurses into extra visiting time and all the Popsicles I can eat. I bite the inside of my lip to keep from smiling. Sometimes she’s cool.
“Please join us,” Mrs. Kim says. “I’d love to meet the friend Ryan has been talking about.”
I raise my eyebrows at Ryan as our mothers carry dishes to the table and mouth, Friend?
He just shoots me a get over yourself look. And I laugh.
We settle in around the table and I’m struck by the thought that my parents never did this with Jack’s parents. I mean, sure, they knew each other, were teens in the same grade and Evanston isn’t what you’d call a “big city”; most parents know one another on sight. But sharing a meal—never.
Maybe that’s something we can do when I’m back? Do I want to do that? The last thing I need is for any future breakup to ruin more things for my mom—even a hypothetical friendship killed by a breakup that’s definitely not happening.
“Have you been coming here a while?” Mrs. Kim’s question pulls me back into the parental conversation.
Ryan looks like he wants to tape her mouth shut. I guess someone picked up some hospital etiquette. I’m so proud.
“Since she was six weeks old.”
Mrs. Kim’s eyebrows shoot up. No one really expects that answer. “That long?”
“It never seems that long, but yeah, several years, forty surgeries or so, and a few blog posts…” And Mom is off on the story of Ellie’s life. I am here just to add nods or small anecdotes when necessary. This is how it always goes. Mom knows more about my medical life than my fleet of doctors. I’ve committed her spiel to memory, and I just wish she’d let me tell it. She has such ownership of my story—and I suppose for years she was the only keeper of it.
Something taps my foot and I look up. Ryan’s staring at me across the table. An unspoken question peers out from his eyes. I shake my head. It’s nothing. Some things you just have to accept as a kid with major medical problems, and that something is your parent playing fast and loose with your life.
“So we’re friends now?” I ask to distract him.
He pokes at his food. “I mean, aren’t we?”
“Oh yeah. I mean, sure.” Not the answer I was expecting.
“Just for now—because your rules.”
“Right.” I tap my fork on the edge of my plate, his answers not sitting well with me.
“His cousin also had an autoimmune issue, that’s why we came here,” his mom adds as I float back into the parental conversation.
Ryan’s hand tightens on his spoon. I think he might actually snap it in two. Parents never realize that sometimes we want to keep our oddities to ourselves.
“Oh really?”
“Hmm, took her forever to get a diagnosis, always in and out of the hospital. But once they figured it out, she’s been able to control the flare-ups.”
Mom and I fall silent. I turn my fork around. Family history. Must be nice for things to be solved like that. Poof, and you can have answers. Some of Mom’s earliest blogs wrestled with this exact issue. Who’s to blame? And if there’s no one, then somehow it must be her fault. As much as I hate her blog, I’ve read every entry. They were a road map of when my disability stopped being mine and became our family’s, like some kind of noxious butter.
“Is Ryan going on the trip to Morelands?” Mom asks. They’ve carried on the conversation.
He looks up from his soup, caught off guard. I guess he has some explaining to do to Luis. “I haven’t heard anything about this. Tell me more,” Mrs. Kim asks. Her voice has that mom-neutral edge—the one that makes sure teens everywhere know they messed up. Mom network. They are never going to let anything go down in secret.
“Oh, Luis is gonna be pissed,” I say, looking at Ryan and grinning.
His mom looks lost, but she focuses on Ryan. “I was going to tell you,” Ryan says.
“It’s a trip for our friend Luis—a goodbye tumor party,” I say. Mom takes over, and with all the real details.
“I’m letting Ellie go because her friend Caitlin is. I wouldn’t let her go alone.”
Well, at least that’s one hurdle down.
“Do you feel up to it?” is all his mom replies. What a loaded question, but at least his mother is giving Ryan a choice. “You should call your friends—I’m sure they’d love to come see you.”
“They all have games this weekend.” Anger laced with regret shapes every word. I want to reach out and tell him that it’s okay, that I know what he’s going through. Watching the rest of the world get on without you, doing the things you love while you’re stuck in this limbo of a place, is a real mind fuck.
“I think you should go,” his mom says with some finality. So maybe his mom does control his life.
There are of course conditions, most of which I know already. Emergency number plugged into phones, medicine taken, if we feel the least bit bad call and they will collect us.
In the end I’m excited, because I’m one step closer to a bit of freedom and Ryan looks like he’s going to go all Joker on me.
“And you have something to tell your mom … unless you want Caitlin to pull the plug,” he says low enough for only me to hear. Just when you think a boy is on your side.
“I thought you were on my mom’s side.”
“Maybe I’m just on your team.”
He holds my gaze and I am at a loss for a comeback.
We help the Kims clean up, and Ryan gives me a pointed look when Mom and I leave. Now or never.
We get ready for bed mostly in silence, Mom talking a bit about the next day and what to look out for at Morelands. My phone pings with more texts from Caitlin. Mom stands at the foot of our bed. Behind her, the computer glows. I tuck my knees into my chest and want to bury my head there, but I don’t look away.
For Jack.
“What?”
Deep breath, I tell myself. She loves you. A small voice says, Maybe too much. “Can I—I want…”
“Ellie, what is it?” Mom peels back the blankets and starts to fluff the pillows. She doesn’t see that there’s anything wrong. That I’m not living on a tightrope. This is just a normal night for her.
Spit it out.
“I want you to stop posting about me online.” My voice is small and far away, but somewhere in there it holds the weight of a stone.
Her brow furrows. “Those people are our community. They’ve been there for us through everything. They know what it is to have VACTERLs.”
I chew on my bottom lip. Mom talks about VATERs Like Water like it’s a part of her.
“I just don’t want you to talk about … about my surgeries and stuff. It’s just a lot and I want … I want some privacy. I want to be my own person.”
“Ellie…” And I believe the emotion in her voice. That she heard me. There’s hurt, and it feels so close to the voice she used to talk to me in when I was just her daughter and not her daughter and her problem.
Tears catch in my throat, tangling up with a coughing fit that’s been threatening my lungs. Hospitals tear us all apart. Mom was the one who brought me here—because it was the best, and it probably did save my life. But now look where we are. Mom sits on the bed next to me and I hide my face in my knees, unable to look at her.
“Ellie, look at me.” Her words are gentle, and when she repeats them they strengthen—firm but full of love. They tear at me. What am I doing? Still, I think of Jack reading Mom’s words—what must he think of me?
“What’s wrong?”
“You just make me sound like I’m still a kid. An infant that you need to take care of. I just want it to stop.”
“Oh Ellie,” she says, and hugs me. Her weight is comforting, but her words are stones and I fear they may leave bruises. “I didn’t know this was how you felt.” She kisses the top of my head. “I promise, no more posting about you online.”
And just like that, a load is lifted. I look up at my mom, breathing easy because this wasn’t as hard as I thought it would be. She’s going to change.
“Thank you,” I say.
That night I can barely sleep, but this time it’s not the coughing that keeps me up or anything to do with my body. I sneak out of bed, grab my hoodie, and head for the family room.