View Cover
The Golden Hour
The sun is a flower that blooms for just one hour.
— Ray Bradbury, "All Summer in a Day"
In elementary school, I watch the film version of Ray Bradbury's short story "All Summer in a Day." We are several classes gathered into the library, huddled around one of the shared television and VCR sets. We sit with our legs crossed, hands neatly in our laps, necks craned up toward the artificial blue light. Our faces take on an eerie glow from the lit screen.
In one of the scenes, a young girl is locked in a room. Her knees are pulled into her chest and she's sobbing. This is the saddest thing I have ever seen. The sun was taken from her.
#
I nursed Elyse as an infant and into toddlerhood, sitting in the rocking chair in her nursery. A patch of sunlight filtered through the blinds and landed on my arm. The beams of light held dancing motes of dust suspended mid-air. Cradled in my arms, nestled against my flesh, Elyse often submitted to sleep. A tower of children's board books stood beside us on the dark IKEA nightstand, as well as a circus-themed music box that operated with a crank, a gift from Elyse's grandparents. The music box played the tune "Für Elise," composed by Beethoven, who himself was disabled. For Elyse. Elyse's song.
#
Bradbury's story is set on Venus in a dystopian future where the sun emerges once every seven years, and for only one golden hour. We follow a group of school children who are forever trapped indoors, who spend time daily under sun lamps. The skies are perpetually grey and rainy. Most of the children have never seen the sun and of those who have, none of them remember what it's like, with the exception of one new student, Margot. Margot arrived from Earth only five years earlier and the other children are jealous of her. Only Margot remembers the sensation of the sun. Collectively, the children count down the weeks, days, hours until the sun's appearance, but it is Margot who is most excited. Moments before the sun's arrival, the teacher steps out. A bully tricks Margot into believing the sun isn't coming, and in that created confusion, he and the other children push Margot into a utility closet and lock the door. A moment later, the sky lightens, the teacher returns to summon her students, who run outside in ecstasy, and they forget Margot completely. Margot's muffled screams and bangs on the locked door go unheard. She is abandoned, left behind.
#
Day after day, Elyse in my lap, I played her tune. I guided her fingers to the crank and helped her turn the dial, but her fingers would alight, splay outward, as though the handle were hot to the touch. Grasping was beyond her skill set. I wanted badly for her to use the music box the way it was meant to be used. Her chubby hands pushed the toy up into her face, and she brought the crank to her mouth. The only sound was the clang of the music box dropping to the floor. I wanted desperately to hear her song, the way it should be played.
I cradled Elyse in my arms. Playtime and storytime had ended. The sun descended in one fell swoop into the earth. The slack weight of Elyse's being pressed against my breast. With one deft finger, I broke her latch; one tear of milk ran from the corner of her wet mouth. I transported her limp body to the soft cotton mattress of her crib, laid a blanket over her torso. Her hands were cupped by her face like half moons, wispy hair curled around the backs of her ears. I smoothed two fingers along the creases of her forehead. The motion soothed her. Then I bent over the crib railing to kiss her plump cheek, careful not to wake her.
She remained a baby much longer than most babies, which I both appreciated and loathed. The contradictory feelings were like nostalgia for a past that never was, hope for a future that would not be.
#
In the original short story "All Summer in a Day," as readers we are with the narrator and the school children outside, witnessing their jubilation at the sun's return, the rapid growth of the flowers, the planet awakening. We don't experience Margot's perspective. But in the film version, we see Margot sitting on the floor, scrunching her knees into her chest, sobbing, holding herself. A crack in the door filters in a shaft of light that eventually fades away, and we know, as Margot does, that she has missed the sun. The sun was taken from her.
I will never forget viewing this scene as a child, the shaft of sunlight withdrawing and the sense of injustice burning in my chest. I felt that child's agony as viscerally as if it were my own. That scene represented two of the saddest things I could imagine: to be excluded and to miss out on the sun.
#
Waiting for Elyse to reach a developmental milestone is like seven years of waiting for the sun to emerge. When the moment comes, the effect is a ray of sunshine in an otherwise grey world. The golden hour is pure celebration, light. The experience isn't the same with my other children, inhabitants of Earth. They are expected to reach milestones. I celebrate them, too, of course I do, but it isn't the same. As neurotypical children, they bask in summer light all season long, as every child should, while, societally, Elyse shivers in winter's eternal darkness. With her, I must live all of summer in a day.
#
I attended a training session with fifteen other parents, the majority of them moms, who had kids with Down syndrome. The goal of our weekend was to be educated in how best to support new parents who've received a prenatal diagnosis of Down syndrome.
"Did you know about the diagnosis before or after birth?" the facilitator asked us. "How did you feel when you found out?"
We threw words onto the chart paper. Grief. Sadness. Loss. Surprise. Anger. The list was overwhelmingly negative. I sat there feeling critical of the instructor, who had a twenty-something-year-old son with Down syndrome. Did she say "Down's kids"? I hated when people did this, as if John Langdon Down were the father of my child. I was overly sensitive to the vernacular, to my insistence on person-first language, an individual with Down syndrome. I sat there feeling righteous — we knew beforehand. The facilitator nodded in agreement to the listed feelings we came up with: yes, these are all normal reactions and feelings to have in response to receiving a Down syndrome diagnosis.
I raised my hand.
"But isn't that part of why we're here?" I argued. "To hopefully change societal reactions to having a baby born with Down syndrome? To give these parents hope? It's not all bad."
The others looked at me with sad smiles. Some had been crying. The facilitator held my gaze a beat.
I went home that night and nursed Elyse, then passed her off to Dan for storytime. I sat on my bed in our room across the hall, legs crossed, and wrote in my journal. I wrote in long, angry strokes against the page, outraged at how people with Down syndrome were treated and regarded. Without my noticing, an eerie blue light crept into the room through the blinds and beamed through the window directly in front of me, colouring the walls and filling the room with sadness. I stopped writing to examine the light that bathed my lap.
Scattered notes of "Für Elise" floated in through the doorway.
Eventually I stood, walked to the window to look for the cause, and saw only the morose face of the full, shining moon. I was overcome with a heaviness and cloaked in melancholy I hadn't felt since receiving Elyse's prenatal diagnosis. After her birth, I refused to allow any sorrow to seep into my periphery. Two things could not be true at once: I couldn't both love my daughter and be sad that she had Down syndrome, so I chose love.
I collapsed onto the bed. And once I began to cry, a barrage of tears arrived, an endless flow, and I was sobbing, sobbing beneath the blue light. I cried until the blue faded and the sky deepened to dark night.
The facilitator told us the story of when her oldest son got his driver's licence. She felt a sense of pride and accomplishment for her eldest, but also a sense of loss that her younger son with Down syndrome would likely never have the same experience. She labelled this feeling "chronic grief." Grief was born with the initial diagnosis, and this grief resurfaced at will when the parent was reminded of the ways their child was different or missing out. When the facilitator explained this story, I wanted to throw a brick through the window behind me. Why was she telling us these things? Why did the narrative have to remain so overwhelmingly negative?
I have encountered many success stories over the years: adults with Down syndrome who are married, have earned degrees, drive cars, hold down steady jobs, and speak up for themselves. I have my own success stories as a proud parent. Elyse learned to breastfeed after being tube fed for the first two weeks of her life. She could identify the letters of the alphabet before her clever big sister. She surfed in Hawaii with sea turtles and learned a second language. These success stories do not negate the real medical and societal challenges — discrimination, communication, low expectations, ableism — some of which she and our family face every day. The daily challenges exist, and so too do the days when the blue light seeps in and the world feels heavy.
I maintain that "chronic grief" is a depressing description, one that offers a bleak outlook, though it may be accurate and true to lived experience. Just because we don't like or agree with something doesn't mean that it isn't true. Chronic grief does not, however, help me to live and accept the present moment with my daughter.