Chapter One
Not Today, Universe
“We aren’t sure what her life expectancy is.”
Imagine your life if those were the words the doctors spoke after months of testing led them to your definitive diagnosis. Imagine living your life with a diagnosis so rare that every single provider was left scratching their heads while trying to figure out how to treat you.
On the outside, I looked normal. On the inside, my body was struggling to function properly. I was diagnosed with a rare genetic mutation when I was a few months old. My mother left the hospital with what she thought was a newborn with some mild breathing issues.
Our small town hospital never should have sent me home. They didn’t have the capabilities to provide complex medical care. It wasn’t until I started turning a dusky gray when my mother would try to feed me that they realized something was seriously wrong.
I was rushed to a nearby city that had one of the best children’s hospitals in the country. It was a massive research center and it was the place that I spent almost the entire first year of my life.
A majority of the smooth muscles in my body were affected by the rare genetic mutation. It severely impacted my lungs and intestines more than any of my other organs. The heart also tends to be affected with my diagnosis, but only as the disease process progresses.
Unfortunately, the handful of children who had a similar diagnosis to mine had all passed away from cardiac issues before reaching adulthood. That seemed to be the last leg of the disease. After the heart was involved, it was essentially game over.
I was fortunate enough to not have any major cardiac involvement… yet.
“Luna!” My mother called from downstairs, her voice floating up into my bedroom. Tank, my Italian Mastiff, lifted his head off my lap and looked to the door. “It’s almost time to leave for school!”
A sigh slipped from my lips as I closed the pastel purple notebook in front of me, tucking my pen into the spiral binding. Since I spent the last few months of my senior year of high school in and out of the hospital with respiratory infections, I had been doing a majority of my school work virtually. I wasn’t really looking forward to going back in person for the last three weeks. I was always known as one of the sick kids, the ones that everyone constantly looked at with some hint of pity in their eyes.
All I had ever wanted was to be treated normally.
Rising from the chair at the small wooden desk in my bedroom, I walked over to my closet to get dressed. I had awoken early this morning and ran through my mental checklist. My mother had taught me over the years to manage my own home medical care at home and for that I was grateful. I spent the earlier years of my life with a home nurse and it felt like my privacy was always being invaded. My alarm on my phone chimed, alerting me with one of the numerous notifications I had set.
I no longer had a need for the central line in my chest, but they kept it there in case of an emergency. There was always talk of one day hopefully being able to remove that tube, along with my tracheostomy tube, but no one knew if I would ever see that day.
I have had a tracheostomy tube since I was a month old. It was one of the first surgeries that I had as a baby, when they realized that my airway was completely collapsing on itself. It was one of the main things that had kept me alive this long and continued to do so every day of my life.
Grabbing a syringe, I twisted it into the small balloon that is attached to the trach tube and deflated it before securing a small speaking valve onto the end of my trach. I was able to talk without the one way valve on, but my doctor preferred that I use it as it doesn’t allow for air to pass through the tube, so I was forced to breathe normally.
Even though I was born with the lungs of a 90 year old person with a severe case of COPD, some of my lung tissue had regenerated from the years of advanced medical care. I only had to use the ventilator now while I was sleeping or if I was sick. It was a tad annoying, but by the end of every day, my body tended to reach a point of exhaustion.
After running through my list, I rechecked my outfit for the day in the mirror. My dark brown hair was as straight as a board, but I pulled it back in a French braid, leaving a few pieces framing my face. My porcelain colored skin stood out in contrast to my dark hair and my deep blue eyes looked like the darkest depths of the ocean.
Today was a good day and there was actually a pink tint to my cheeks. Instead of looking deathly, I only looked mildly sickly. Tilting my head back, I looked up at the ceiling and raised my middle finger in the air. Nice try, Universe. You can take me another day.
Readjusting the bottom hems of my shorts, I stared at the way my clothes hung on my thin frame. There was a little more definition to my body than there once was. Two years ago, I was fortunate enough to receive an intestinal transplant at the best children’s hospital in the country after being in intestinal failure for many years.
No one knew the shelf life of my new intestinal tract, but I wasn’t about to take it for granted. For the first time in my life, I was actually holding a steady weight and gaining normal pounds instead of constantly losing them. After giving myself another glance, I abandoned my bedroom and made my way down to the kitchen where my mother was waiting. Tank followed along after me, as he was always attached to my hip.
“Good morning, sunshine,” my mother smiled at me over her cup of coffee. “Good morning, Tank,” she greeted my dog as he walked in beside me. Her dark blue eyes looked tired, but they always have. I don’t know that I’ve ever seen my mother looking refreshed and not overstressed. “Sit down and eat. I made your favorite.”
I glanced down at the table, noting a pile of French toast sitting in the center on a plate. Memories instantly washed over my mind from my seventh birthday. The doctor’s approved that I could start trying solid foods right before my birthday. That morning my mother asked me what I wanted to have for breakfast and I randomly asked for French toast—something that I never had the pleasure of trying before, but always watched everyone else thoroughly enjoy.
That morning, she took me out, just the two of us and got me exactly what I asked for. After drowning the pieces of toast in maple syrup, I took two of the smallest bites possible. My mother cried tears of happiness that day, you would think that I won an Olympic gold medal. It was a memory that had stuck with me since then and my mother always made me French toast when she thought I might need a pick me up.
A sad smile crept onto my face. She made enough to feed an army, but sadly, it was just the two of us who were home most of the time. Both of my brother’s were in college, so I was the last kid left. And my father—bless his soul—worked his ass off as a diesel mechanic to pay for whatever medical bills insurance wouldn’t cover.
Unfortunately, for my mother and I, that meant he spent long hours in the shop and was rarely ever home. We made things work, though. My mother was my rock and the constant in my life. She was the glue that held all of us together and I would literally be dead without her.
Taking my seat at the table, I speared a piece of toast with my fork and slapped it onto my plate. After putting on some butter, I poured some syrup onto it before cutting it into pieces. My mother watched me carefully as I took a small bite and chewed it slowly. Even though I had been eating for a few years now, I was always careful with the way I consumed my meals.
The last thing that I needed was to choke on a piece of food.
“Are you ready for your first day back?” My mother questioned me with hesitation. She had been the one excited for me to attend in person the last three weeks. Me on the other hand—I was content just finishing the year at home.
Shrugging, I swallowed my piece of French toast before meeting her gaze. “Not really. It’s not like my friends haven’t visited me while I was home. It’s kind of pointless for me to go back now.”
“Nonsense,” my mother waved her hand dismissively. “If you really don’t want to go, I won’t push you to, but I think it would be good for you. You’ll be graduating in three weeks. You have prom next weekend. This is the last few times you’ll be seeing a lot of these people.”
An exasperated sigh slipped from my lips. “I’m alright with that. My real friends are the only ones that I care to see.”
Melanie and Salem were my two closest girlfriends. They checked in on me and visited every chance that they could. We barely had any classes together this year, so I don’t see them as often as my mother thinks while at school.
Suddenly a horn beeps from out front, promptly causing me to jump from my seat. “There’s Oliver,” I told my mother, offering her a smile before pushing another piece of French toast into my mouth. “Gotta get to school.”
“Make sure that you check in with Joyce at the nurses office when you first get there.”
I walked over to the front door, grabbing the multitude of bags that I was required to carry with me. “Yes, mother, I know.” My backpack, medical supply bag, back up ventilator and a suction machine. I had practically become a pack-mule since I could carry my own things.
The medical bag was heavy, as it included literally everything I needed in case of an emergency and my mother watched me with sadness in her eyes. I hated the look that she was giving me right now and it wasn’t a second later before she was scrambling to her feet to help me with the door.
As she pulled it open, my best friend and neighbor, Oliver, was standing outside waiting with a huge grin on his face. His sage green eyes shined back and the sun poking through the clouds illuminated his inky black hair.
“Let me carry some of that,” he offered, grabbing the ventilator and medical bag from me before I had the chance to refuse. That was Oliver Hart for you. The perfect gentleman who was always there to have my back. “Hey Tank,” he greeted Tank as he stood beside me with his tail wagging. Oliver was one of his favorite people too.
Oliver Hart was my partner in crime. His family moved in next door when we were both three years old. After our parents met, we had our first play date and we haven’t been separated since. He has been by my side through every surgery, medical procedure and hospital stay. If you name it, Oliver Hart has been through it with me.
“You are so sweet, Ollie,” my mother beamed at him, completely charmed by him like the rest of the universe. I mean, how could you not be? With those plump lips and perfect smile. That chiseled jawline and sharp features. Oliver looked like he was sculpted by the most skilled artist of all time.
“My mother says the same exact thing, Mrs. Truly,” he smiled back at her, hoisting my bags over his shoulder.
“Well, your mother sure did raise a fine young man.”
Oliver chuckled, taking a bow in front of her while somehow still holding my things for me.
“We should probably be going,” I interjected, smiling sweetly at two of them. “Don’t want to be late for my first day back.”
“Of course not,” Ollie nodded. “Have a great day, Mrs. Truly.”
My mother stepped up to me, giving me a hug and a kiss on the cheek before sending me on my way. It killed her every time that I was out of her sight and I understood her fear. Medical issues or not—you never knew when it was the last time you were going to see someone.
“Bye Tank,” I told my dog as I bent down and gave him a hug. Since I had a nurse at the school who was there just for me, I didn’t feel it was necessary to bring in my service dog. He was a little bit of an inconvenience there and I already drew enough attention to myself without him, but I felt bad every day I left. Tank looked up at me with his sad brown eyes and I knew he wasn’t happy to be left behind.
I followed after Oliver to his black Subaru STI and paused behind him as he opened the backseat. His muscles flexed through his heather gray t-shirt as he put my things in before turning to me for my backpack. After handing it to him, I took my seat in the passenger’s side before he walked over and got in behind the steering wheel.
“I’m glad you decided to come, even if there’s only a few weeks left,” he offered quietly as he pushed in the clutch and released the hand brake before shifting seamlessly into first gear.
I glanced over at him as we pulled away from my house and out onto the street. “You can thank my mom.”
“Well, I’ll have to make sure to do that when I see her this afternoon,” he replied, flashing his perfectly straight teeth at me. He directed his gaze back to the road as he took a left turn onto Main Street. “Are you excited for prom this weekend?”
A groan slipped from my lips as I tilted my head back against the headrest of the seat and closed my eyes. “I can’t believe you talked me into it,” I admitted as I lifted my head back up to look at him. “Are you sure there’s no one else you’d rather go with? I know that there were a bunch of girls hoping you would ask them.”
Oliver looked over at me and the different shades of green danced in his eyes from the sunlight. “There’s only one girl that I would want to go with and she’s sitting right beside me.” He paused and winked as he held out his pink to me. “Always and forever, Luna Truly.”
My breath hitched, catching in my throat and I fought the urge to rip off my speaking valve to breathe easier. As if I hadn’t already struggled to learn the art of breathing, when he said things like that, it made my lungs struggle even harder to get the oxygen that they needed.
I hooked my pinky with his. “Always and forever,” I murmured back to him.
You see, Oliver Hart was my best friend and my partner in crime.
But he was also the one that my damaged heart belonged to.
Even if the feelings would never be reciprocated.