The sun goes down The stars come out And all that counts Is here and now My universe Will never be the same I’m glad you came
Steve Mac, The Wanted
My sock drawer is stuffed to overflowing: Everyday athletic socks, fuzzy slipper socks, a few dressy pair of trouser socks. But my special collection consists of crazy, colorful knee socks and on March 21st I’ll have plenty to choose from in honor of World Down Syndrome Day.
Trisomy 21 is the technical term for Down Syndrome. Chromosomes made up of DNA exist in every human cell, typically 46 chromosomes or 23 sets of two. In the case of DS, an abnormality occurs, resulting in an extra chromosome, 47 in all. The extra, third chromosome is on 21st set. 3-21. Hence, March 21st was officially declared the day the world would recognize these extraordinary individuals.
“I took a deep breath and listened to the old brag of my heart. I am, I am, I am.”
There’s a stillness that descends on the hospital late at night, softening the harshness of bright lights and the sterility of hard floors. Sounds are muted and voices hushed. Sydney is the only patient in the sleep lab tonight located at the end of a long, empty corridor. It’s dark in her room but for a night light and the glowing dots of the medical devices hooked up to her. I shift uncomfortably in the reclining chair next to her bed and wonder how I’ll make it until morning when it occurs to me that my father-in-law spent more nights this way than I can count during the fourteen months of my mother-in-law’s battle with cancer. It also occurs to me that the last time I sat in the dark next to a hospital bed was with him, the night before she died.
When I was young, I married my best friend. It’s a cliché easy to dismiss as sentimental until it happens to you. In my husband, I found my home. Now, ensconced in midlife and traversing the terrain of family life, inherent with its joys and sorrows, I’m filled with deepening gratitude for his presence and a love that grows stronger — and simpler — with time.
A scene from the movie Valentine’s Day illustrates the enigma of mature love. After they’ve had a devastating rift, Shirley McClaine says passionately to her husband of fifty years, Hector Elizondo, “I know I let you down. And maybe you don’t think I deserve your forgiveness, but you’re going to give it to me anyway. Because when you love someone, you love all of them — that’s the job. The things that you find lovable and the things that you don’t find lovable.” His anger quickly melts. As he takes her in his arms, he whispers: “Shhhh. I understand. I’ll never leave you.”
The older I get, the more I’m drawn homeward. When the weather turns cold, my craving for soup on the stove, a fire in the hearth, and time to knit begs to be slaked. Chilly temps find me cruising arts and crafts stores, feasting on colors and textures of yarn, imagining new projects. Winter sends me digging for my stash.
On hands and knees with the bedspread flipped up, driven by this seasonal hunger, I drag out from under my bed baskets and totes of knitting supplies, including fifty years of my mother’s accumulation I inherited after she died. Unlike my messy stockpile, hers is meticulously organized: stitch holders, markers, and gauge rulers, and dozens of pairs of needles—aluminum, plastic, wooden, double point, circular—all collated by size and neatly labeled. Her handwriting mark the pages of dog-eared pattern books dated back to the 1950s. Unused skeins of expensive alpaca wool leave me to wonder at her unfulfilled intentions.
It’s a gorgeous spring day on our 22 acres outside Fulton, a brocade of rolling green set against a periwinkle sky. It’s where I come to breathe. Today all four kids, their families, plus my dad and sister visiting from out of state are here to celebrate. Four generations together, a rare treat. I’m relishing every idyllic minute. The afternoon, spent fishing, exploring, hiking, and picnicking, is nearly over before I remember the photo.
“Hey, you guys!” I say, calling everyone in. “Let’s get a picture under the big tree.”
The night is a pleasant 68 degrees, but heat emanates from the bright stadium lights, and I’m damp beneath my Rock Bridge High School T-shirt. My boots clink on the aluminum steps as I climb past the student section and up the bleachers. A few people in the stands wave and others call out “Good luck!” I slide into the seat my husband, Steven saved for me while I helped our daughter, Sydney, execute the night’s events.
“She’s ready,” I say, glancing at the scoreboard. A minute thirty left in the half. Steven pats my leg.
The words are sharp, a staccato litany of frustrations ricocheting around the room. They’re mine, directed at my misbehaving teenager. Adrenaline shoots through my veins. Careful, I think, sucking in a breath, holding it. The silence echoes loudly. In my head, the diatribe continues.
Shhhh, a gentle voice says. Stop now.
My youngest stands in her pjs, ten feet away in the darkened kitchen. Backlit by the hall light, she’s small for fourteen, but contrition renders her smaller. The fire has gone out in her eyes.
In the hush of the hotel room I hear cars rushing by on the busy interstate. Above the hum of the fan, a far-off siren rises and recedes. It’s late. My teenage daughters make their cozy bed on the pullout in the other room. Their noisy whispers taper to silence then morph into the breathy sounds of sleep. Cocooned in the quiet, I listen to the rise and fall.
My husband and I detach for the moment, suspended between their sleep and ours. We recline on crisp white sheets, he with his phone, and me, my laptop. Time seems to stop, or perhaps I’m just willing it to. Shutting off his phone, my husband rolls over and reaches for the lamp. “Goodnight, honey,” he says. “Don’t stay up too late.”
In the dark, a glow emanates from my computer screen. I remove my reading glasses and rub my temples. I can’t give in. Not yet. Facing down the night, I try to stretch the hours until morning when my 31-year-old daughter will undergo a double mastectomy.
It’s late December, only days to Christmas. The kids are out of school and it’s dark already at 4:30 pm. All the lights burn in the kitchen where my husband is busy making sugar cookies with our girls. Flour dusts the counters and floors. A delicious aroma fills the house. I’ve got work emails to tackle, but I’m doing it reclined on the couch while listening to Christmas music. iTunes shuffles our collection of eclectic albums, creating the playlist that plays pleasantly in the background. Until the opening phrase of Happy Xmas catches my ear.
“And so this is Christmas, and what have you done? Another year over and a new one just begun.”
The unmistakable timbre of John Lennon’s voice causes me to pause. I close my eyes to listen. Such a familiar, comforting melody.
And when she shall die, Take her and cut her out in little stars, And she will make the face of heaven so fine That all the world will be in love with night And pay no worship to the sun.
William Shakespeare, Romeo and Juliet
And now it’s happened: I’ve lost my mother. She laid down her broken body—soft and comforting still, but no longer up to the task of moving her through the days — and died. She laid down her weary head, the short-circuiting neurons in her brain finally quiet, and slept.
In her own bed, under her lovely floral quilt, she drifted away and left physical concerns behind in the vessel housing them. Her breathing stretched, the silence between each ragged inhalation hung with anticipation. Her pounding heart slowed and faded to a quiver, like the fluttering wings of a little bird, until it beat no more. My sister quoted Shakespeare: “To-morrow, and to-morrow, and to-morrow, creeps in this petty pace from day to day.” For Mom, the pace has ceased its forward motion; there are no more tomorrows. And in retrospect, the petty becomes hallowed. “Out, out brief candle! Life’s but a walking shadow . . .”
I knew it was coming, or rather, that she was going. For months, I mourned her absence even in her presence, trying to absorb everything and indelibly imprint her image on my memory. The days, finite and measured, poured like sand through the hourglass as I watched them go. I knew I would lose my mother, but I didn’t know it would bring me to my knees.
I didn’t know how heavy grief could be, that I’d drag myself under its weight from my bed each morning, pulled into motion only by the slipstream of routine. Even then, fatigue would leave me to endure the hours until I could curl up again, alone. I didn’t know the world would be too loud and too bright and too fast, its audacity for going on as if the cosmos hadn’t shifted unforgivable. I didn’t know I’d hide from my neighbors or seek solace nightly in wine or toss and turn restlessly in my sleep, dreaming of something just out of my grasp. I didn’t know it would feel like depression.
I didn’t know it would hit this hard, losing my 71-year-old mother to multiple sclerosis. I didn’t think I was entitled to the same bereavement as my friend who lost her 21-year-old son, full of potential, to a heroine overdose; or my friend, whose 5-year-old grandson was taken by a brain tumor before his life had even begun; or my sister, whose husband died of kidney cancer when he was 47, leaving a young son fatherless. Because Mom had been ill for decades and because I’d planned for the end of her life, because she’d become increasingly distraught and difficult, because she suffered, because she was at peace and ready, because I believe her death to be merely a transition—for all these reasons I thought my sorrow would be tempered. I know now, it matters not if the death is tragic or abrupt or expected, if the life has been long or interrupted; grief pierces and reverberates through all who have loved and lost.
I didn’t know it would lodge in my body, that I’d tamp down and swallow my emotions. That staying busy would be a coping mechanism. That avoiding reminders and seeking distractions would keep me functionally numb, but one handwritten note could unravel my hold. I didn’t know it would be a physical urge, this need to cry, and when unleashed, the intensity would crash over me in waves, plunging me under and washing me to shore only when the tide went out. I didn’t know I’d be a private mourner, that I’d get through the memorial with only a few tears, but in the dark of night, in my husband’s arms, I’d finally weep unabashedly, like a child.
I didn’t know people could show such tenderness, that when I returned home I’d find my friends had cleaned my house and left plants and flowers and cards and nourishing food. I didn’t know their generosity would humble me profoundly, that every thought and prayer, every gesture, every act of service would soften the pain and blur the edges.
I didn’t know I could miss my sisters so terribly, the airport goodbyes a severing. I didn’t know we would merge into the embodiment of the best of our mother, that separation would feel unnatural, impossible even. I knew the sacred experience of nurturing the exodus of our mother’s spirit from this world would bring us closer; I didn’t know escorting her body under a full moon to the teaching hospital where she would donate her brain for research would be just as holy.
I knew we’d draw comfort from each other, but I didn’t know heaving sobs punctuated by belly laughs could be so cathartic, that the somber ceremony of scattering her ashes at the ocean’s edge on a cold, overcast day could suddenly turn uproariously funny when one sister, attempting a dramatic toss into the wind, tripped and fell into the freezing surf. I didn’t know we would celebrate our mother’s magnificent life with champagne toasts, crying as we sang along to Helen Reddy and Anne Murray and Karen Carpenter.
I knew we were strong women, that working hard was inextricably woven into who she raised us to be. But, I didn’t know we could clean out her apartment in 3½ days, a whole life summarized in the boxes we carted to my sister’s garage. I didn’t know evidence of Mom’s bravery and integrity would manifest in the intimate task of settling her affairs; not only proof of her creative, tenacious resilience—the hallmark of her personality, but also, signs of her mental decline no one could see.
I knew she was loved by many, not only friends, but those to whom she bonded with fierce loyalty, her chosen family. I didn’t know I’d dread the task of calling each one to deliver the news, that the words would stick in my throat. I didn’t know that their lives would also be bereft without her and I’d be compelled to comfort them, even as my own heart was breaking.
I knew the daily texts would stop, that I wouldn’t hear her voice exclaiming, “Hi, honey!” on the other end of the phone, that when she came to visit it was the last time. I didn’t know when I logged into her account and shut off her electricity the sudden realization of its permanence would take my breath away. I didn’t know I’d question if I should have done more and agonize over whether I’d been enough. I didn’t know I’d ache for her forgiveness.
I knew she’d stay close, that we would feel her; I didn’t know she would come to me when I was exhausted and spent, in the dream-like trance of half-sleep, and spread comfort like warmth through my chest, or when I was quiet and contemplative, in a cool breeze, gently caressing my face and answering my question, “Is that you, Mom?”
I didn’t know the previous contentment with my pretty little life would now feel like complacency; that restless whispers would become clamoring discontent, catapulting me into change and insisting I choose a different path. I didn’t know this transformation was not hers alone; it was mine as well. I know now I’ll never be the same, but therein lies the gift: the pain that shattered my carefully crafted day-to-day, leaving me to ponder my purpose and revisit the very meaning of my existence, has allowed me to create the reality I was born to live.
I know now losing my mother hurts like hell; her absence incarnate is like a light gone out and it will be dark for a while. But in the darkness, I awaken. Holding hands with divinity, I glimpse that I, too am divine. My loss is not diminished by this blissful epiphany, and surprisingly, I’m glad. I don’t want its sharpness blunted. I welcome the overflowing experience, brutal one moment and glorious the next. I did not know, I could not know I would cherish my grief, a grief made exquisite because I loved her so. As I love her now. As I will forever more. This I always knew.
Lisa Pullen Kent is a writer, yoga teacher, musician, and passionate lover of people. She writes on parenting, marriage and the sacredness of the ordinary in everyday life. Lisa splits her time between Columbia, Missouri, where she lives with her adult daughter who has Down syndrome and Steedman, Missouri, where she lives with her husband on their farm in the country.