Chapter 16 Lucy
LUCY
{Over twelve years ago}
Young Lucy. Two months later.
“Did Tom have a good birthday?” I asked, pushing the question past the lump in my throat.
Mom nodded slowly but didn’t speak. She leaned against the wall, arms crossed, purse handle secure in the crook of one elbow. I still didn’t understand why staff made them meticulously change and prep to visit me, yet mom always came in armed with her bag.
“Did… did he have a theme or anything?” I probed, hoping for tiny morsels. Tidbits of my sibling’s life, so I might pretend I was part of his childhood.
Mom rolled her shoulders a little, then sighed. After the sound, she looked a bit ashamed. The smile she slapped on next before answering was almost worse than her obvious irritation at my questions.
“We did a sports theme. Basketball and soccer decorations. The cake looked like a football field. We rented an air hockey table. That sort of thing.” She made it sound so mundane, like it wasn’t a big deal to have a real birthday party.
Did I ever have a birthday like that before getting sick?
If I had, I must have been too little at the time to remember.
“And his friends came? I bet Tom has a lot of friends.” My voice was almost wistful; I couldn’t help it.
“His teammates came and a handful of other school friends.” Mom’s smile faltered.
Was she imagining what kind of birthday I might have if I was a ‘normal’ child?
That’s what I was doing. There were rainbow decorations dotting every surface in our house, fringe curtains across each doorway, a sea of balloons swimming across the ceiling.
Maybe I’d wear a party hat and have a sash announcing that I was the birthday girl.
And I’d wear those things for an entire week, riding high on sickeningly sweet cake and the utter joy of being born.
“That sounds nice,” I finally said after an extended silence. I glanced over at Dad, who hadn’t said a single word since arriving.
Dad paced the small room, stopping occasionally to examine the equipment or peer at my chart.
He'd always been a man of action—a construction foreman used to solving problems with his hands, so when I became something he couldn’t fix with tools and grit, his entire sense of self shifted.
My illness had rendered him helpless, and he didn't wear helplessness well.
With determined steps, he suddenly moved to the foot of my bed and grabbed my ongoing chart from the slim holder.
“Different antibiotic the past few days," he mumbled under his breath as he read, stumbling over long prescription names and doctor’s jargon. Every diagnosis, every hospital transfer, every infection scare, he’d tried to stay on top of things, yet he was always behind the times.
As soon as he researched and figured out a new issue with me, another would pop up.
I shrugged. “White blood cells were a little high. No big deal.”
“And your CRP too,” he added, brow scrunched as he scanned the rest of the recent chart notes.
“What’s that again?” Mom asked, voice sort of faraway. When I glanced over at her, I saw a telltale, glazed-over expression on her face. It betrayed her deeper thoughts—mentally she was far, far away from this hospital room and physically she didn’t want to be here.
“C-reactive protein,” I answered before my dad could, “we’ve only heard it about a million and one times over the years.”
“Right,” mom nodded, standing a little straighter away from the wall and trying to focus on the world around her. “Of course I knew that, I’m just tired today. Your brother had back-to-back games yesterday and—”
“Has he had games every day for the last eight weeks?” I spit out, bitterness flooding through me as if it had mingled with my blood and was being actively pumped through veins by my shrinking heart. “I’m amazed you fit me into your schedule.”
I really didn’t mean for my voice to sound so cold. I really didn’t mean to hurt her feelings. Yet, when guilt flashed through my mom’s eyes, I felt the tiniest morsel of satisfaction. Why did I want to be mean today? Why did I want to say even uglier things?
Dad came to mom’s rescue, taking a step towards me.
“Your mother is under immense pressure right now. She’s got your brother to take care of, her new job, the house has to be packed up for the move.
On top of all that, she’s been on the phone nonstop with this hospital and insurance trying to get things covered for you. ”
A new job? The move? I didn’t know about any of that…
But I didn’t ask for details. I just felt angry.
“I didn’t ask for her to do that,” I grumbled, knowing I was being unfair and cruel and childish. But if they thought they were tired of it all, what about me? I was the one poked, prodded, caged. They could at least leave here and live an actual life—a life I knew very little about apparently.
My words triggered an immediate response—both parents subtly shifted away from my bed.
Mom slid against the wall a few feet further from me, closer to the exit.
Her hand moved unconsciously to adjust her mask.
Dad glanced at her, his face pained, and then he checked his watch.
I wondered if he was deciding if they’d visited long enough, and if it was reasonable for them to leave already.
In the past, I could pretend not to notice the little signs that they were uncomfortable around me. In the past, I could ignore the little comments that compared my situation to my brother’s.
I was sick. He was healthy. I drowned in melancholy. He existed in joy, always laughing. I was trapped by IVs and diagnoses. He was freer than I could understand, even in my wildest daydreams.
I was difficult.
My brother was so very easy.
Blinking slowly, taking mental snapshots of my parents, I saw mom glance at the door and dad drop his arms limply to his sides. Mom was in flight mode. Dad had no fight left.
My chest ached.
A tickling in my throat preceded a bout of coughing.
I knew it was coming but could do nothing to stop it.
I reached for the glass of room temp water on my hospital tray.
I sipped it as hacking began to shake my body.
The water dribbled and sprayed as I tried to keep drinking.
The attack lasted for a solid ten minutes.
By the time I could properly breathe again, my earlier venom was long gone.
Mom and dad had moved closer to my bed. Mom’s hand rested awkwardly on my back between my pronounced shoulder blades.
Dad was standing at the foot of the bed, staring.
He’d run his hands through his hair more than once while I’d been indisposed; it was a mess now, sticking out at all angles.
The tension in the room was thick, suffocating almost. I tried to cut through it with the first topic that came to mind. “Nurse Dee said she'd bring me extra pudding cups after my scan today," I blurted out, trying to fill the awkward silence. "She thinks chocolate is medicinal."
Above their masks, my parents’ eyes did not warm at my words.
“Is Nurse Dee new?” Mom finally asked, her voice low and muffled.
“She’s been here a while,” I responded, voice barely above a whisper.
“Oh,” mom said simply.
Dad said nothing.
The silence began to spread again.
“I got the highest grade on my last English test,” I said quickly, hoping this subject would go over better than the last.
“That’s good, Lucy.” Dad nodded slowly. “I’m glad you have that to keep you occupied.”
School wasn’t the right choice.
Because all three of us doubted I’d live long enough for good grades and graduation to matter.
“So…” mom’s voice trailed off, then she rallied, pushing word after word out from her mouth with obvious effort, “School is going well then? You still like that… that one teacher?”
She couldn’t remember Mister Donaldson. Which was fine. It wasn’t a big deal. Parents forget these kinds of details all the time. I bet she couldn’t remember all my brother’s teachers either.
“Yeah, he doesn’t bore me to tears.”
“Math can be boring,” she nodded.
I didn’t correct her. I didn’t say it was history.
“I’m pretty good at math,” I managed to hide the brittleness in my voice, “my teacher asked me to explain something to the class last week. I even qualified for a competition in Salt Lake City, but being a certified bubble girl makes that a no-go.” I laughed a little, trying to lighten the mood.
Dad checked his watch again. Mom shuffled her papers. Neither laughed with me.
I looked for a new subject. Something good, something to ease the tension. But the mention of a move circled back, pecking at my brain.
Before I could ask, a rap of knuckles on the door preceded the Omega disease specialist. He stuck his head in first, offering a smile. “Mind if a few students join today, Lucy?”
I shook my head and he shuffled into my room, a gaggle of bright-faced would-be doctors behind him.
“Ah, your family is here. Perfect. I was going to call tomorrow. I’ve been hoping you’d visit so we could talk in person. I’m set to go back to my home hospital soon.”
What the doctor didn’t say was he’d been treating me for almost two months, and in that entire time, my parents hadn’t visited.
“Yes, we’re so grateful you’ve been here to help our Lucy,” mom said quickly, “I’m sorry we couldn’t get here sooner to meet you.”
“Yes, well. Sometimes news isn’t well-suited for a phone call.” The doctor scanned my parents’ faces, then looked down at me. Sympathy shone in his gaze, and I got the distinct impression I wasn’t the first young patient to have absentee parents.
His words registered then: ‘sometimes news isn’t well-suited for a phone call’.
My heart skipped a beat.
Dad stiffened.
Mom’s face paled.
Like me, they waited for the fresh bad news to hit.
Whatever the doctor was about to say, he smiled wider as if looking like the happiest man on Earth would soften the blow.
Would his words be the ones that finally broke my parents?
My makeshift calendar bloomed inside my brain.
The fewer visits from my parents. The way mom’s clothes hung looser on her frame and how wide swaths of gray had invaded Dad's temples seemingly overnight.
The doctor’s words streamed out, but they sounded like the adults in that old cartoon, the one with the boy in his yellow striped shirt with the few sparse hairs atop his head.
Charlie something. Medical jargon. Life expectancy if I continued to respond to new treatments with varied failure and success.
The doctor spoke endlessly, and the students devoured every syllable.
It was performative, sincere care slipping away as I became little more than a specimen.
Zoning out in these kinds of moments was self-preservation.
Despite his voice sounding garbled and strangely-pitched, I did make out a single word—transfer.
I should be used to this endless cycle.
Initially optimistic doctors trying everything in their arsenal to make me better.
Their inevitable descent into resignation.
Crestfallen parents as they absorb more disappointment.
Finally, the termination point before it started all over again. Another facility. Better doctors, more equipped to handle me. Fresh promises soon to be broken.
A nauseating wave of grief and anxiety washed over me. I didn’t want to be the new sick kid on the ward again.
Yet, then I heard… ‘bright’ and ‘house’. Maybe things were looking up? Maybe I could go home? A bright future. A warm house. Hugs from my brother every day. He probably wouldn’t even recognize me now.
The doctor paused, turning to his students. My brain buzzed, but my parents’ voices cut through the din.
"Maybe we should consider the state program," Mom whispered.
"You can’t be serious," Dad hissed back.
“I want her to get the care she needs without destroying us in the process!”
Was the state program some new type of financial aid? That would be good… I was old enough to understand how much money I stole from them, simply by being alive.
My illness consumed everything. My parents’ happiness and money and emotional stability. I was this noxious black hole, sat at the center of their world, sucking everything into my blackness. Nothing escaped my destruction.
“Let me know what you decide,” the doctor’s voice filled the room again. “The sooner the better, beds fill up at Brightfield quickly. She may not get this chance again.”
Brightfield…
Not my own house.
“We’ll consider it carefully,” Dad said slowly.
“And give you an answer by the weekend,” Mom added on quickly, almost enthusiastically.
The doctor said goodbye after patting me on the shoulder and saying something that I’m sure he imagined was uplifting. “As long as you’re alive, tomorrow becomes today.”
The Omega disease specialist was no poet.
The room went quiet as the door closed behind the last student.
I thought I might drown in the waves of silence.
“You guys are moving?” I asked.
“We are,” Dad’s tone was careful when he answered.
“It’s nearer to Tom’s school,” Mom explained. “Smaller, but nice. The mortgage is less and—”
Dad gave mom a withering look which made her stop speaking. It was too late though; Mom had said enough to make me understand that the move wasn’t exactly a choice.
“At least you won’t have to fight with Mister Gary about the fence anymore,” I forced a smile, but when a memory hit, the grin became genuine. “Remember when he painted the whole thing lime green overnight just to make you mad, Dad?”
“I certainly do,” Dad chuckled. “I painted it bright pink two days later.”
For a moment, my parents’ faces softened, remembering a life beyond hospital rooms and medical bills.
It seemed like a lifetime ago—when I visited hospitals instead of living in them.
Dad launched into a story about a family of raccoons who recently decided the old shed was their new home, his hands animating as he described the mayhem.
Mom laughed, a genuine sound I hadn't heard in months.
In that moment, I could almost pretend we were normal—just a family sharing stories on a rainy afternoon. Almost.