When I was younger, I never wanted to go to bed. Clad in warm pajamas with red trucks and blue ships, I’d quiver my lips and approach my parents with the most pitiful doggy eyes I could make.
My father never gave in. He’d scowl at me and grunt “Into bed mister!” But afterwards he’d go up to my room and read me a bedtime story. Noisy Little Truck, Big Little Bus…the list trickled on. I loved hearing his gruff voice soften as he acted out voices - squeaky ones, gentle ones and even scary ones.
My mother never let me stay up either. She’d just laugh and ruffle my head, carrying me to my room. With a kiss goodnight, she’d tuck me snugly in and give me my favourite cuddly toy, Jack the Beaver, before turning off the lights so I could see my glow in the dark stars.
I loved my parents. My father’s spiced tea in the air, my mother’s roasted coffee. The way they would swing me so I could feel like I was flying and always have them catch me when I started falling. The way my father would kiss my knee after I fell with a whispered “Strong boys cry too,” and my mother would knit together a soft green quilt for me to wrap around myself when I was coughing and wheezing.
I was 7 when I was diagnosed. A pale little 7-year-old with a head poking out from under a soft green quilt, tired of coughing and wheezing, tired of the bloody mucus I produced.
Bronchiectasis. An uncommon condition for children but I got it. Unidentifiable cause. I hadn’t gotten any severe respiratory tract infections, my immune system was average, my lungs had developed properly and I hadn’t inherited any disease from my parents.
I knew because I had padded to my parents’ room after they put me to bed, wanting to sleep with them that night. I heard them talking, whispered fragments of a conversation that I didn’t really understand. “It isn’t..fault, Charles. You heard..doctor..no genetic disease..”
My father had cried that night. Large ugly tears that he choked down. My strong brave father who never cried. I never told them that I went to their room. It felt too private, like I was seeing something that should be hidden to protect the rest of my innocent childhood naivety. I simply went back to my room and clutched Jack and cried into his soft fur because if my father was crying that meant this was bad enough that I should cry too. Strong boys cried anyways, I knew that.
At first it was simply antibiotics. Then I had to receive it through a face mask that directed the mist into my airways. And I was given an inhaler, carefully looked over by teachers. I was the “weird” kid and the “sick” kid who was always absent. I was the kid who people were friendly with but never friends with because they didn’t want to catch my disease even though I told them it wasn’t contagious and because they didn’t want someone who coughed out buckets of green slimy mucus.
Afterwards I had these exercises to clear my airway like breathing exercises and percussion, a fun game where I did silly actions and my parents tapped me like a drum. It was boring at first but my father simply got me to do it while he read to me and then I never minded afterwards. We spent more time outdoors as well which I didn’t mind, jumping and running.
I noticed more vegetables on my plate but I thought it was because I was a big boy and big boys ate their vegetables. That was what my mother told me. I noticed we drank more water but I never minded because I liked water. It was refreshing and cool and soothed my sore throat.
Things didn’t change. I still didn’t want to go to bed, I still made woeful doggy eyes and quivered my lips. My father still read me bedtime stories and drank his tea and kissed my knee when I fell. My mother still kissed me goodnight and gulped down coffee and knit me quilts in my ever changing favourite colours. They still let me fly and caught me when it felt like I was falling.
But my condition worsened. And after the third time I had been to the hospital in a month, the doctor gently suggested that my parents should start getting ready for the worst.
I didn’t understand much. Only that my father and mother started acting weird and I had to do a whole other round of tests and scans that were uncomfortable but never painful. Not even the needles that I didn’t dare to look at but didn’t actually hurt. The nurse praised me as the bravest child she knew.
I lie on the uncomfortable bed that crinkles with plastic sheets. An IV drip feeds me fluids and minerals as a plastic mask is currently helping me to breathe. I glance outside. The sky is dark with dozens of twinkling stars that my glow in the dark ones had never managed to imitate. Red cars and blue buses honk and screech. I had never outgrown my love of vehicles, not even as a 12-year-old.
I am going to die. I know that with a certainty that is frightening. But in the many years I have spent coughing and wheezing and wrapping myself up in warm quilts, I knew I wouldn’t survive if it didn’t get better. And I am not getting better.
My father squeezes my hand tight, rough grip a gentle caress, brown skin a startling contrast to my cold pale fingers. I smile weakly in his general direction, my lips quivering.
What I would give to be back as a small child, snuggling as my father read me bedtime stories and my mother trucked me in.
What I would give to be a normal child who complains about school and has crushes and cycles to get ice cream with his friends.
What I would give to grow up and marry and have children of my own. To give my parents grandchildren. To laugh when they try to get out of going to bed and ruffle their head and read them stories and tuck them in. To kiss them everyday and tell them that I love them.
Something I have learned is that no matter how old you are, you never want to go to bed. You want to stay up like an adult and feel big. And somehow, the hours you spend outside never feel like enough.
Life is too short.
My mother comes into the room. She strokes my hair gently and kisses me goodnight before tucking me into the bed. She wraps a soft green quilt that has been patched time after time around me and hands me Jack.
I close my eyes and the lights turn off.