Category Archives: Letting Go

Cancer in a COVID World

There are moments when the veil seems
almost to lift, and we understand what
the earth is meant to mean to us — the
trees in their docility, the hills in
their patience, the flowers and the
vines in their wild, sweet vitality.
Then the Word is within us, and the
Book is put away.

Mary Oliver, The Veil

They called her Barbie, an apt moniker for her given name. A real-live Barbie doll, she was tall, gorgeous, voluptuous, blonde. But she also carried herself with the elegance of a Barbara. Moviestar glamour. Dressed to the nines and turning heads. She made you feel important when she bestowed her attention on you. She was all yours. Her eyes held an almost mischievous twinkle, while her gorgeous, wide-mouthed smile lifted on one side only. Her laugh was sensuous, subtle.

Dad emailed on Monday. ​

“Good morning, kids. Our dear Barbie passed through the veil last night about 9:15 pm Seattle time. She never woke up again since she went to sleep Thursday evening. It was a very blessed and peaceful passing. No more pain and trauma to her little body.”

There are five of them, my dad and his siblings, stair stepping, like a single slinky, one child pouring into the next: girl-boy-boy-girl-girl. Trisha, Bill, Maynard—my father, then Barbara, and Pammy, the youngest. Maybe it was their humble beginnings, growing up with working class parents in a small mountain town, poor, but happy. Maybe it was my grandparents’ tough love or the necessity of relying on family, but whatever the reason, my father and his sibs are tight. Throughout life’s adversities, into their 70s and 80s now, they’ve remained best friends and one another’s fiercest champions. They have faced and conquered everything together.

Until pancreatic cancer.

The last time I saw her was six months ago when I flew up for Grandma’s funeral. Six months and a lifetime ago—before the coronavirus pandemic. The matriarch of our clan lived until she was nearly 104; those are some great genes I’ve inherited. At times immortality seemed a real possibility. I hadn’t seen Aunt Barbara since diagnosis, but there were photos. Plus I know how this disease ravages and torments. Reassurances from my family, however, emphasized Barbara’s resilience. Her spirits were fully intact, her faith strong, her smile as radiant as ever. 

Chic in a pale silk pantsuit and leather ankle boots, she wore a floor-length fur draped over her shoulders to ward off the chill. Still strikingly beautiful, cancer had chiseled her porcelain features into a sharp likeness, a sculpture of herself, without rounded curves. The gauntness in her face pained me, but when I wrapped my arms around her fragile bird bones, I felt the wracking of her body reverberate through mine, and the tears I would not show her collected under my closed lids. ​


I pictured a photo of Barbara, circa 1970-something snapped as she posed seductively next to a white Jaguar parked on the beach in Southern California. The blue sky merged with blue ocean. Her Breck girl hair whipped in the wind. With savvy sophistication, she embodied the beauty I aspired to in my little girl hero-worship.   

We spent days circled up on sectionals, recliners, and pulled-up kitchen chairs. Hours of conversation, catching up on years worth of life, reminiscing about the past. Barbara was there for much of it, though sometimes, succumbing to exhaustion, she’d curl up on a stretch of couch, unwilling to miss anything. Her husband, Richard would unfold a soft blanket and tuck it around her edges, pat her gently while continuing the conversation. Even if she drifted in and out, she was still there, dammit.

She was still there.

 I noticed with amusement through the waning of the hours that she wasn’t the only one who dozed. At some point or another, every one of my elders nodded off. With arms folded, chin dropped to chest or sitting erect and perfectly still, eyes closed. With opportunity, a head might loll back, the mouth open slightly. Upon waking, the process of re-orienting played across their faces. The catnaps obviously granted these septa- and octo-genarians a second wind, for their stamina far outpaced mine. 

Wiped out by 10:00 pm on my last night, I retreated to the quiet darkness of Aunt Trisha’s bedroom. Intending only to rest my eyes, I crashed hard despite the cascading laughter coming through the walls. Blearily I roused when light flooded the room through a crack in the door. 

I jumped up, seeing it was Barbara.

“You’re not leaving, are you?”

“No,” she whispered. “Just getting my coat. Go back to sleep.”

“But, don’t go without saying goodbye,” I said urgently, emphatically. “I’ll get up. I want to see you before you go.”

She eased the door shut with a soft click and I laid my head back down, fighting to stay alert. I kept my focus half-cocked toward the door, intuiting how like her it would be to slip out quietly so as not to wake me. I later emerged to find everyone still chatting leisurely around the dining table, except for Barbara. Richard had taken her home.

Time was up.

Tomorrow morning I’d leave for the airport and I knew I would not be back to say goodbye. Considering it had taken me years to make it up to Seattle from my Midwestern home, the crushing knowledge landed: I would not see her again in this lifetime.

Not in person, at least. She did appear in a small window on my computer screen. The lock-down birthed a weekly Monday family Zoom, a calamitous Brady Bunch-style cacophony of technical gymnastics that proved to be quite entertaining. Close-ups of foreheads, noses, and blank walls, interference and background noise, competing conversations both on and off the digital airwaves.

“Can you hear me?”

“We can’t hear you. You have to click unmute!”

“I can’t see anybody.”

“Can you see me?”

“I can see you!”

“Who said that?”

A scan of the familiar, beloved faces revealed our shared genetics. Dad and Uncle Bill, ruggedly handsome, channeled my beloved Grandpa, Shorty he was called, gone some 22 years. I compared my sisters faces with my cousins, finding the same eyes, cheekbones, smiles. Across the generations, across the country, we gathered in this virtual space, in real time, in a way we never could in a physical sense. We compared notes about work, school, developments from state to state, how we were all coping. We scheduled around Barbara’s chemotherapy treatments and she attended as many as she could, bantering along with the rest of us.

Between one Zoom and the next, she was admitted to the hospital in horrible pain. The tumors overtaking her digestive system had obstructed nutrients and were beginning to prohibit organ function. She’d been there before—deathly ill, touch and go, but she’d always rebounded. This time there would be no rallying. 

Even knowing the eventuality, it is never palatable. It is never acceptable.

But here it was.

Barbara found Richard, the love of her life, when she was nearly 50, when she’d seen enough of the world to know what she wanted. A devoted, adoring couple, they built a rich, beautiful life, though 25 years was not nearly long enough. They fully intended to ride out any challenge as they always did. Now, they were being told there was nothing left to try. Palliative care and end of life decisions had to be made and as excruciatingly difficult as that was, navigating it through a global pandemic held heartbreaking ramifications.

Visits were allowed, but only Richard and Pammy. The other sibs were too high risk themselves, and in my father’s case, too far away. Restrictions and time limits applied. My first thoughts were stories of nurses who, acting as proxy, held the hands of dying patients when their loved ones couldn’t be with them. In my mind is burned the stark image of an elderly husband outside the window of his wife’s hospital room, desperate to comfort her through the glass separating them. I’d heard of FaceTime death vigils, FaceTime confessions, FaceTime farewells.

Through my personal losses, I’ve learned the most brilliant epiphany of approaching death is the invitation to embrace life fully. The mundane becomes holy. The simple act of breathing, a gift. To love and be loved, a sacrament. 

For Barbie, and Richard, and everyone who loved her, the most significant blessing came when she got to come home. She would not be isolated in a sterile hospital.

She would not be alone at the end of her life.

Once settled, on one last morning of lucidity, she was showered with texts and emails and videos and songs from her large family. She talked with her siblings and gave them the goodbyes they desperately needed. 

On the small screen of a phone held close to her face, my dad told his little sister how much he loved her, then asked tenderly, “Barbie, are you afraid?”

“Oh, nooooo,” she cooed peacefully.

It was permission. If she could walk into the next world without fear, her family could let her go. 

She died on Sunday night. On Monday afternoon, our next Zoom began with the usual fits and starts as folks logged on, checked their mics, adjusted camera angels. Simultaneous greetings and conversations zig-zagged across the gallery. The geometric family tree took shape as new people blinked into existence in their individual cubicles. There were jokes about how Richard’s love of Jack-in-the-Box tacos required a detour on the way home from the hospital, followed by the question, “Jack-in-the-Box has tacos?” followed by incredulous laughter. There was good-natured ribbing from Richard to Pammy about in-laws who get into their fridge and overstay their welcome. 

Then we got down to the hard stuff. 

“What can we do for you?” everyone asked Richard.

“I can’t believe it,“ he said. 

“It doesn’t seem real,” Pammy sobbed despondently. She’d lost her best friend.

With minimal detail, they told us how once home from the hospital, they’d never left Barbara’s side. When she took her last breath, they were there. They said she passed three days nearly to the minute after slipping into unconsciousness.

“I’m so proud of her,” Richard said and rubbed the stubble of his unshaven chin.

His understated grief not only triggered my own, but the empathy I felt for him brought me to the ugly cry. I covered my mouth with my hand and let the tears come. Lately, my emotions are scrubbed up raw. Tender, like new skin. My nerve endings fire all the time. I feel everything without a buffer, as if there are no more desensitizing layers laid down with busy, distracted, numbing activity.

The pandemic has stripped me clean. 

This, too, might be a gift, though it hardly seems so when it hurts this badly. Everything shines with meaning now. Grief begs me to take it in and absorb the simple, extraordinary presence of love, wherever and however it shows up.

The funeral will be live-streamed via teleconferencing software, much like our family Zooms. Music, prayers, memories will be shared. A eulogy. A slideshow. Through the window of our computer screens we’ll view the service from our living rooms. We’ll reach out for comfort through the interwebs. We’ll mourn together while we’re apart which seems nearly poetic in its brutality. We cannot be together, even to commemorate our beloved’s life, yet nothing can keep us apart. The connection is stronger and resonates beyond any tangible barrier. It cannot be severed by cancer or COVID or even death.

At the end of his email to me and my seven siblings, Dad wrote, “Life is so short. Forgive each other. My parents are gone, a younger sibling is gone. Our lives will be over in a moment. Be thankful for every day that God gives you breath.”

In these moments I’m comforted, when I see beyond the veil. Brief, fleeting moments of unobscured truth. Nothing can separate us, for we are never apart. Not here, not now. Not ever. 

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Filed under Aging, Cancer, COVID-19, Family, Grandparents, Grief, Letting Go, Loss, Pandemic, Siblings

View From A Quarantine

Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That’s how the light gets in

Leonard Cohen

“Be careful what you wish for,” my mother used to say.

“You just might get it.” A wise woman, whose words I often disregarded when she was alive, her advice has been on my mind a lot lately. 

Time, as we experience it on this plane–as we have all agreed, is linear. A steadily-paced constant. Yet I know I’m not alone in the perception of its acceleration. In recent years I’ve felt more and more like a hamster on its wheel, running frenetically in a perpetual, never-ending race. My days consisted of  rushing to commitments, appointments, and activities packed into an impossibly tight schedule and coordinating the inherent overlapping and conflicting logistics of the same. Fueled by a bottomless to-do list, my go-mode was switched to “over-drive” nearly 24/7. 

Until March 15th, that is. Before that fateful date, I ran myself ragged trying to keep up, all the while complaining about being too busy. 

“I don’t have time. There’s never enough time!” 

The words chanted in my head on repeat, serving as the mantra that simultaneously reflected and solidified my reality. The words streaming on a loop were sent upward, a prayer, intended or not, pleading Please, slow me down.”

And then, the pandemic stopped life in its tracks. 

Our family chose social isolation earlier than the rest of Columbia because of our most vulnerable member, 20-year-old Sydney. People with Down syndrome are more susceptible to a variety of health concerns, among them, respiratory issues. When she was two, we nearly lost her. Hospitalized with pneumonia that quickly spread to both lungs, she remained in the PICU for a month, unable to come off a ventilator. Her prognosis was bleak until suddenly . . . it wasn’t. The doctors persisted, her treatment worked, and her little body fought its way back from the brink. Once she turned around, recovery was astonishingly quick.

Steven and I have no desire to revisit that perilous situation, hence our vigilance in quarantining. On Saturday, March 14, I taught my last group fitness class. We pulled Xander out of high school and Sydney out of her day program and part-time job. Steven continued to work from his office at home. The personal losses for each of us weighed heavy. Gone was my job of 13 years at Wilson’s Fitness, the job I love, working with and for people I adore. My kids saw their daily routines and future plans vanish into nothing. My husband bore up under the mounting pressure of economic crisis and the rippling effects crashing through the markets. ​Now every day brings more uncertainty with little reassurance to hang onto.

We watched as postponements and cancellations rolled over our community, throughout the country and the entire world. We felt every closure, shut-down, lay-off, and furlough. The great, ceaseless churning machine of the world  seemed to just . . . stop. 

At least within the sphere of my reach. 

I’m well aware that for others, life has shifted gears into an alternate reality, even more fast-paced. Those who keep our life-sustaining systems up and running, roles that were undoubtedly taken for granted before, warrant hero status now in the after.  Workers who make sure the lights still come on and the water runs and the garbage is picked up and the grocery shelves are stocked and goods are transported and packages are delivered and food is prepared. And particularly workers in healthcare who take care of the most vulnerable among us, who step up to practice medicine in a way no schooling could have prepared them for. The display of humanity at its best inspires me with overwhelming gratitude.

Peering out my quarantine window, I see evidence of the helpers that Fred Rogers’ mother told him to watch for and they are everywhere. It is a daunting task; we must work together if we are to get through this. But there is hope in the big picture.

The village is intact.

In reverse, looking in through the window that frames our little familial microcosm, one might observe a broad spectrum of behavior on any given day. We grapple with attempts to stay calm and present in the un-knowing of what’s ahead. Any bets on consistency are off. Some days acceptance seems effortless. Frequently, those are the days we skip the news and allow life to unfold naturally. Other days, restlessness sends us careening off the walls, ricocheting without intentional direction. The next day might find us squinting at the digital windows of Zoom to catch a glimpse of the outside world at large, each pane filled with the sight of familiar faces. Those are the days our hearts get a much-needed recharge. Then there are those intermittent down days when, without warning, a tsunami of grief rises up to pull us under.

”Is this our new normal?” we find ourselves wondering, though we know it can’t go on forever. For now, though, we have nowhere to be except right where we are and that has never happened. I recognize it for the miracle that it is. But on Day eleventy-seven of our release from the confines of routine, I’m starting to feel a little adrift.

It’s not that we haven’t explored the opportunities of open-ended free time. Just as many others, we’ve been impressively productive and participated in trending quaran-time activities: cleaning out every closet, drawer, and hoarding nightmare in the house, preparing gourmet recipes and wholesome meals, working out constantly, practicing spirituality, journaling, painting, remodeling, gardening. Bursts of energy enable us to tackle long-neglected projects and finally check off those to-do lists with great satisfaction.

But not every day. 

Coping with this pandemic requires more than creative solutions. Responding to this unique situation will result in more than one-size-fits-all emotion. More like a whole wardrobe in each day. For several days I’ll feel sunshiny and full of promise, then clouds unexpectedly gather, the blues set in and I wander the house, unable to concentrate, trying without success to follow the game plan I’ve laid out for the day.

It’s not just self-pity that sends my heartstrings reverberating. I watch through the windows of my laptop and iPhone and TV screen struggles framed on social media, stories of friends, loved ones, and strangers, too. They may be different than my own, but the impact is universal.

Parents in quarantine have less time, not more, wrangling children while working from home, feeding them 25 times a day and trying to provide some sort of normalcy to allay the fear that it’s “the end of the world as we know it.”

I see my friends who parent kids with special needs and find themselves overwhelmed with providing stimulation, support, therapy, and interaction without benefit of the interventions they rely on. And the strength of single parents is already herculean. Now they are taxed to unbearable levels, living out an even more literal version of “Do I have to do everything myself?”

 I watch us all worry about jobs and small businesses that may or may not make it through, about shrinking incomes, about the economy as a whole. We worry about our healthcare system, if there will be adequate supplies and equipment. We pray for those witness to suffering and death, exhausted and spent, who put their own health on the line to care for others. We pray for those navigating cancer, heart disease, diabetes, and other chronic conditions. And we pray for all those who are ill and dying. Especially at the end.

Especially when they are alone.

We’re watching a global crisis playing out in real time, in real life. A seismic shift of proportions this epic cannot be underestimated for its earth-changing aftershocks. I cast my thoughts forward to envision this new world and can’t quite come up with it. Where we’re going, I don’t know, but I do know there is only one way to get there. With compassion for ourselves and others; my mom taught me that. It’s the legacy she left me with.

 “I have one principle I hold tight to,” she said.

“Always be kind.”

“And always, always be kind to yourself.” 

We are not psychotic, it just feels like it right now. There is no right or wrong way to get through this; we’ve never done it before. Surviving comes first. But the fix for a broken world? That comes when her inhabitants emerge into a new paradigm to move beyond surviving to thriving, when new perspectives birth new possibilities. Then, the view through the quarantine window reveals its most poignant gift with brilliant clarity: in healing ourselves, we heal the world.

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Filed under Family, Gratitude, Grief, Letting Go, Motherhood, Pandemic, Self-Care

Just Breathe

Re-posted from March 6, 2014

“I took a deep breath and listened to the old brag of my heart.
I am, I am, I am.”

Sylvia Plath

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 are 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 she’s hooked up to. I shift uncomfortably in the reclining chair next to her bed and wonder how I’ll make it until morning. 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.

But here and now, Sydney is well. We’re only here one night, for a sleep study. Multi-colored wires trailing from the electrodes glued to her head are gathered in a rainbow ponytail and plugged into a large unit sitting on the bed next to her pillow. A smaller unit is strapped to her chest emitting various cords that coil and disappear under the blankets, connected to her legs and other body parts. The tubing for the cannula in her nose and a sensor that protrudes over her mouth like a tiny microphone tucks behind her ears and tightens under her chin. More sensors are taped to her face at her cheeks, temples and chin. It’s an alarming sight if you don’t know what you’re looking at.

My girl knows the drill, though, having undergone sleep studies in the past, the last when she was seven. She put up very little resistance then. Now, as a fourteen-year-old, she may have protested a little more, but overall, she succumbed to the awkward and uncomfortable preparation for the test without complaint, this ever-accommodating child. While I can’t imagine being able to drift off while rigged up like this, Sydney is sleeping the peaceful sleep of the innocent as cameras and monitors record her CO2 and oxygen levels, her heart rhythm and other vitals, as well as her gross motor movements. She’s my good sleeper, always going down easy and sleeping through the night.

Sydney at seven

Her first sleep study was when she was just a week old. Sydney came exactly on her due date and though we had no suspicions of Down syndrome, her birth wasn’t without incident. Labor came hard and fast, but since she was my third, I stubbornly paced at home awhile and insisted on taking a bath and shaving my legs before I let Steven convince me to make the 30 minute drive to the hospital. I guess I pushed it too far because once there, frenetic activity ensued and nothing much went according to the beautiful birth plan I’d created, including the epidural I requested. In between painful contractions I noticed a conversation between nurse and doctor and sensed some concern. When a neonatologist showed up, I knew something wasn’t right. In my delirium I heard talk of meconium. Before I could make sense of it, she was here and I caught a brief glimpse as the doctor handed her to a nurse who whisked her quickly away to a warmer. She seemed blue and for a few terrifying moments it was silent. There were no cries from my newborn, no talking from the medical personnel huddled around my daughter, and no words from my husband.

“Was she blue?  She looked blue to me. Didn’t she look blue to you?  Is she breathing?!” My questions came at him, one after the next.

Face hidden behind the surgical mask, Steven’s eyes conveyed thinly veiled panic as they widened and followed our baby across the room in response to my questions.

I later learned she was under fetal stress, meconium was present and they didn’t want her to breathe before her lungs were suctioned to be sure she wouldn’t aspirate. It seemed interminable, but after a few moments, she took her first breath and pinked up. Relief flooded my body as I reached for my baby with a primal instinct. A kind neonatal nurse, Leann (I’ll never forget her), brought Sydney to me, but gently told me she had to go to the neo-natal intensive care unit.

“We’re not what you expect,” she’d said as she patiently eased my baby from my reluctant grasp.

Sydney spent 14 days in the NICU. About halfway through Steven noticed her stop breathing intermittently. He watched her intently for hours as she lay in her isolette connected to a pulse ox, heart monitor, central line, oxygen, IVs and various tubes and wires. He saw her little chest rise and fall, then pause. Nothing. Stillness. Several seconds would pass before she took another breath.  Because of her daddy’s vigilance, Sydney was found to have sleep apnea and she went home on a monitor.

In newborns sleep apnea is an underdeveloped neurological issue in which the brain fails to signal the body to breathe. The monitor is a safeguard, set to alarm when no breathing is registered for an interval of 20 seconds. Adhesive electrodes stuck to the bare skin of Sydney’s chest were attached to lead wires that plugged into a bulky metal box. Not to be disconnected except during bathing, we lugged that thing everywhere for nine months.

Inconvenient?  Sure, but the reassurance was worth it. I had always checked my babies’ breathing when they slept, feeling for the whispers of air moving in and out of their tiny nostrils. Sometimes they were so still I’d wonder, “Are they alive?” and nudge them, relieved only when they moved grudgingly in response. With Sydney, the monitor was my 24/7 electronic sentry, always on duty.

Once off the monitor, we didn’t worry about her central nervous system regulating her breathing, but we did look for obstructive sleep apnea—not uncommon with Down syndrome—where a variety of factors contribute to air flow blockage. Like tonsils. Sydney’s are enormous and though not chronically infected, they nearly close off her throat when she sleeps. Recently, snoring, gagging, and even lapses in her breathing warranted another sleep study.

“Why do I have to stay at the hospital, Mom?” she asked me earlier today as we packed her pillow and blanket along with her iPad.

“The doctor wants to watch you sleep. So we can see you breathing.”

Now, I look at my slumbering little teenage daughter across the darkened room. When she fills her lungs, I can see her breathing. When she snores, I can hear her breathing.  But I can’t actually see her breath, the air that moves in and out of her body. How fragile this invisible, delicate stream, and yet, how powerful. The physical exchange of oxygen for carbon dioxide is miraculous in and of itself. We are purified and nourished in every moment, taking in what we need, releasing what we do not. But more than the mere breath itself, there’s a universal energy that flows like a river through the landscape of the body and through all creation, connecting us with everything that breathes, the very force that animates the inanimate.

In all wisdom traditions of the world, the breath is sacred. In Sanskrit, prana, the original life source. In Native American culture, the Divine Breath, the divine spirit in all living things. In Christianity, God’s breath of life, breathed into man’s nostrils by the Divine. In Buddhism and Taoism, Mindful Breath, the path to enlightenment. In Hebrew, the Nephesh or soul, an animated, breathing, conscious and living being. In Sufism, breath is the source which keeps body and mind alive, body and mind connected.

Our constant companion from birth to death, breath is there . . .  until it is not.

I witnessed Sydney take her first breath and come fully into this world as a living being. I also witnessed my mother-in-law take her last breath and quietly ease out of the physical world. The thought fills me with a rush of profound awe and deep gratitude. Life is incredibly valuable. A gift in every moment. Every breath.

“Just breathe, Lisa,” I think, closing my eyes and turning my focus inward.

{Inhale}

{Exhale}

{Inhale}

{Exhale}

My mind quiets and I am bathed in stillness. It is here I come to commune with the sacred. Here, I connect to the source which unites all life. It is here, I find everything I need.

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Filed under Childbirth, Down syndrome, Family, Gratitude, Letting Go, Loss, Motherhood, Parenting, Special Needs

Love in the Stitches

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 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 labeled. Dog-eared pattern books date back to the 1950s. Her handwriting marks their pages. Expensive skeins of alpaca wool, unused, leave me to wonder at her plans.

I was eight when she taught me to knit, my first undertaking, a self-portrait: painstaking and earnest. My stitches were tight, my fingertips sore from pushing and prying the work tenaciously hugging the needles. Though rife with mistakes, the baby booties provided my first taste of accomplishment. Booty, that is; I never finished the pair. My mother lost the pregnancy when her fourth child, a boy, was still born. We didn’t talk about it much and it wasn’t until I was a mother of four myself that I realized the magnitude of her loss. I wish I’d asked her about it when I had the chance.

The last thing she made me was a pair of fingerless angora gloves featuring intricate latticework. With skills far surpassing my own, she remained ever my teacher, sharing new techniques like a sweater pattern with knit-in pockets, a gorgeous moss-stitched cardigan she made for her mother (a knitter, as well), who was newly widowed and alone. When my Grammy died, the sweater passed to me. I gave it to my daughter who wrapped herself up during breast cancer in three generations of maternal safeguarding.

With my derriere in the air, I reach past balls of leftover yarn to find what I’ve been searching for: a not-quite-finished, nearly-forgotten afghan I started decades ago. Comprised of individual squares with unique patterns of cable twists, tweeds, and herringbone, it is, in effect, a knitted patchwork quilt.

Threading the yarn through my fingers, I deftly cast on, sliding the right needle behind, wrapping the yarn and pulling the stitch through. Reading the pattern, I begin to knit. K4, YO, SSK, (K1, K2 tog, YO, SSK) 6 times, K3. As natural as breathing, the rhythm is soothing. My hands know the way. Like my mother’s: lightly spotted with age, blue veins under thin skin, taut tendons like a puppeteer’s strings making the fingers dance. When I knit, my mother is close. More than that, when I knit, I become my mother. I’m comforted by her presence.

I lay out the completed blocks. Placing right sides together, (unconsciously holding the darning needle in my teeth as she did), I whip stitch piece after piece together until a flowing blanket is formed, a mosaic of complexity. Like a lifetime, the whole is comprised of many parts; seasons of joy and pain, of blessings and loss, merged into a single work of art.

I stand back and take it in, gratified by having fashioned something so lovely. Aware, too, that the doing of it fulfills me as much as the finished product itself. Yet, I’m most rewarded in the giving. Creating a beautiful object that brings joy to others is immensely satisfying. An intimate expression of love, the creation carries the giver’s very essence. This afghan will keep my family warm now and long after I’m gone. My mother knew this. And she taught me well.

Published November 29, 2018 in COMO Living Magazine

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Filed under Aging, Family, Grief, Letting Go, Loss, Motherhood

Depth of Field

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.”

“Mom, I’ve got my good camera in the car,” my son says. I’ll go get it.”

Of the four kids, Jeremy is my only boy. He’s back in school at 31, Wichita State, in the grueling physician’s assistant program. I watch him stride away, six feet and 220 lbs., the KeltyKid carrier strapped to his back swaying as the blonde head of his two-year-old son gently bobs up and down. Behind me, his four-year-old son plays near the base of the sprawling old oak, chasing a tiny black Chihuahua (one of three granddogs) who runs circles around him.

Jeremy returns with the camera. Negotiating the cargo on his back, he bends to place it on a tree stump. I stoop to check the shot and as he adjusts the depth of field, the image sharpens into focus. In my mind’s eye the range of images from near to far begin to merge. Can it be? The blue-eyed boy before me with round cheeks and a broad smile is not my own toddler, but my grandson.

“Ready?” Jeremy shouts. I move quickly to my husband’s side and slip under his arm. My sister scoops up the dog, Dad hugs his teenage granddaughter, and my oldest coaxes her nephew into her lap. Jeremy bolts, his cowboy boots dancing across the ground and his baby boy bouncing along for the ride, grinning open-mouthed. We all laugh and Jeremy slides in next to his wife, just as the shutter clicks, capturing the moment forever.

Life isn’t perfect, but this moment is exquisite. An increasingly familiar emotion surfaces: the deep satisfaction of watching my children blossom into adults tinged with sadness that it’s happening so quickly. My father, white-haired for decades, must feel the same when he looks at me. Though my son towers over me, I clearly see the infant, born with hair forecasting an irrepressible personality. Jeremy chased life, careening off the walls and ricocheting into the next adventure, embellishing his exploits with contagious laughter. Underneath his boisterous joie de vivre breathed the most gentle soul and tender heart, full of compassion and as big and wide as his smile.

They say you’re not just raising your son; you’re raising someone else’s husband and father. My son was a good boy who grew into a good man. I blinked and he was a husband and father. Now he’s raising the next generation. My hair is graying, like my father’s. I’ll blink again and it will be white. But for today, I’m keeping my eyes wide open.

Published July 26, 2018: COMO Living Magazine, Seasons

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Filed under Adolescence, Aging, Babies, Family, Grandparents, Growing Up, Letting Go, Memories, Parenting, Siblings

Coming Home

Ethan and Sydney at the magic moment

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.

“But are you?” he says with raised eyebrows and a smile.

From our perch, I see her on the sideline with the rest of the homecoming court. Stunning in a full-length navy dress and silver pumps — from the children’s department, she wears a white sash like the nine other lovely, accomplished candidates. Suddenly she punches an arm forward and stomps her foot.

What is she doing?” I say. “Oh, no. Is that the whip? Or is it the nae nae?” I prepare to bolt down to the field, but Ethan, her escort is on it. He takes her hand and gently tucks it into his elbow.

This sweet young man, handsome in his brand-new suit, is a fellow cheerleader, but more, he’s her friend. Throughout the years there have been many — Katey and Raegan and Lindsey and Jordan, the kids who’ve seen Sydney first and her disability second.

“Thank God for Ethan,” I say to my husband as we both keep our eyes trained on our daughter below. “Come on Syd, keep it together,” I whisper nervously.

Jordan, Sydney, and Ethan

When Sydney was born with Down syndrome, we had no idea what to expect. She was a cherubic baby with coppery red hair, an adorable button nose and sparkling blue eyes. She loved people and music and food. Not much has changed in 18 years, except now, rather than suspect, we know what a gift she is. Sensitive and compassionate, Sydney regards herself and others without judgment. She accepts everyone just as they are, though the reciprocal has not always been the case.

We’ve made inclusion with her developing peers a priority, which has often meant that I go along to parties and field trips and dances, I sleep in a cabin of seventh grade girls at science camp, and learn the routine for cheer tryouts to teach to her. As I’ve observed the kids in their natural habitat, I’ve seen the bravado that masks their insecurities. The pretense actually reveals an awkward and touching innocence. They’re all searching for their place in the world by measuring themselves against one another. They all want to be accepted. Sydney is no different, she’s just more transparent.

I remember the day she said to me, “Mom, somehow I’m a little different,” with a look of resignation so full of knowing I wanted to wrap her in my arms and never let her go. But to champion her true potential, I’ve had to do just that: Let Go. Again and again and again, tempering my instinct to protect her. I’ve tried instead to empower her, to love herself, to ​​be herself, even if it risks rejection.

Last night, I fell asleep on the couch, exhausted by the activities of homecoming week. My phone buzzed, startling me awake. Sydney, alone in her room, texted me, as is her practice, with her deepest thoughts and feelings.

I feel very emotional 😭 and I’m literally FREAKING Out

I’m so proud of you, honey. It’s a big day tomorrow!

Thanks mom I am praying for you 🙏🏻 thanks for all your supports and needs you deserve to have an awesome award 🥇goes to you I mean it you did it you helped me through times and lots of supporting so thank you mom you are great I love you so much ❤️

Mothering a child with special needs brings the same unbearably exquisite moments coupled with the same painful heartaches, the same sleepless nights, and the same anxiety.

I love you, too. You are fabulous. 😘️

Thanks mom I love you more than cheese 🧀

And mothering this one always brings a smile to my face.

The time has arrived and the crowd quiets as the announcer begins introducing candidates alphabetically. Sydney’s last name puts her at the 50-yard line.

“And now, the 2017 Homecoming Queen is . . . ” The words echo across the football field in a pregnant pause.

“Sydney Kent!”

We’re on our feet as the crowd erupts. The students roar. Sydney’s big sister squeals. Her dad beams. Ethan picks up our girl and swings her around, a genuine princess moment. The crown placed on her head slips down over her eyes and she’s rushed by screaming cheerleaders, who claim her as their own.

RBHS Varsity Cheer Squad 2017-2018

Awestruck, a deep quiet holds me still. I find it profoundly symbolic; as she’s experiencing this ultimate gesture of acceptance, I’m far away, watching. Sydney is on her own. A surge of hope for our collective future swells within me and my heart fills with gratitude for this community and these students. With their vote, these beautiful kids said: “We see you. You belong with us.” And that message doesn’t just change her, it changes them. It changes all of us.

My friend in the row below turns around and jubilantly places both hands on my face, saying “Oh, my gosh, Lisa! You better get down there!” My reverie is broken; everything shifts into fast forward as I make my way down the stairs, laughing through my tears.

Published March, 28 2018 in COMO Living Magazine

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Filed under Adolescence, Aging, Down syndrome, Family, Gratitude, Growing Up, Letting Go, Motherhood, Parenting, Special Needs

A Good Enough Mother

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.

“Go to bed,” I say in resignation. “Think about what I said.” I turn away, exhausted. Tirade over.

In the living room, my husband sits, a witness. Abruptly, I’m awash with self-loathing. I lower myself onto the couch and draw bare feet under me.

“She makes me so mad!”

He listens to my rumination of dance steps well rehearsed: I sacrifice, the kids exploit, I explode, they atone; forgiveness rounds out our choreography. Except for myself. I never quite forgive myself. Drained of my own fire, I see my daughter morph from provocateur to vulnerable teen; she’s done nothing her three siblings haven’t before.

“I need to go to her.” Unfolding my legs, I head across the house to her room. I find her sitting up in bed. She’s been crying, hard. Her nose is stopped up. She’s breathing through her mouth and discarded Kleenexes litter the blankets. Her suffering torments me, but recrimination keeps me rooted at the door. She’s earned her remorse, as I’ve earned mine.

“So,” I begin, but there are no words, just an unbreachable chasm. I hesitate and nearly retreat, when the same gentle voice says: She needs her mother. Unlocked, I take the few steps to her bed, draw the covers back, and climb in. She comes into my arms, lays her head on my chest, and erupts in fresh sobs.

I stroke her hair. My lips brush her temple. “I’m sorry, honey,” I whisper. “I love you.”

“I’m sorry, too,” she says, shoulders shaking. Choking, she sits up. Tears and snot mingle on her face. She swipes her nose across the sleeve of her T-shirt. Suddenly, she’s my precocious toddler, difficult even then, when I was no less flawed myself. A pang of longing rips through me. Did I love her enough? Was I a good enough mother? My mind jumps forward; she’s a young woman and I’m remembering this moment, wondering of my angst-ridden fourteen-year-old: Did I love her enough? Was I a good enough mother?

Time, fleeting, malleable, shifts backward, forward, and lands in the present. I hug my girl tighter, but still, I feel her slipping from my grasp. Motherhood is a wild ride careening this way and that without much to hold on to. Instinctually, we clutch at passing moments, only to find fistfuls of air. We berate ourselves for imperfection, withhold compassion, and crave a forgiveness we alone can grant. When she is grown, will it have been enough? I can’t know, but here and now, sharpened by pain, soothed by absolution, and bathed in benevolence, I could not love her more. And that might be enough.

Published on November 30, 2017: COMO Living Magazine

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Filed under ADHD, Adolescence, Aging, Babies, Family, Growing Up, Letting Go, Motherhood, Parenting

Swallowed in Sorrow

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.

Her phone call after the biopsy replays frequently in my mind; my unsuspecting hello met with silence, then panic. “Mom! It’s CAN-cer!”, the strangled words followed by wails of anguish. Her crying was no different from the terror-filled cries at 2:00 am that sent me bolting to her crib, or the sharp, cascading screams recognizable from across a crowded playground, or the wracking sobs of a heartbroken teen, doubled over in my lap. This timeless trigger awakens my primal need to protect. But I can’t fight this.

After diagnosis, my crying jags came at 4:00 am when the world was motionless and moonlit. My fingers grasped for something to hold onto and came away with handfuls of air, like the strands of hair spooling from my daughter’s head after chemo, un-rooted. When genetic testing proved positive, sadness galvanized into anger. Cancer may take her hair, but it will grow back. Her breasts will not. The loss is palpable, maiming. “Take mine!” I screamed into the wind. “I’m old.”

As mothers, we champion our children’s cause. We’re strong, safe and rooted. If we can’t fix it, we walk with them, holding their pain. It’s never a question; we just show up. And tomorrow, I will. But tonight I am swallowed in sorrow. Tonight I long to lean on my own mother, but she died a year ago. At times like these I’d call Mom and she’d be up, her circadian rhythm peaking at midnight. She’d walk me through the long night, holding my pain. She’d show up now if she could.

I close my laptop, extinguishing its phosphorescence. Regardless of my angst, I need to rest. Burrowing under the covers, the soft light of the moon caresses my face. I close my eyes and ache, like a child, for my mom. Suddenly, quietly, she’s here. My jaw unclenches. I breathe out. An almost imperceptible weight lowers onto the bed. I feel her hand smooth my brow, fingering a curl and pushing it back. Swaddled in peace, I surrender, and drift into sleep.

Published May 30, 2017: COMO Living Magazine

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Filed under Aging, Babies, Breast Cancer, Cancer, Family, Grief, Letting Go, Motherhood

And So This Is Christmas … Let The Grief In

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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. All my albums — traditional, classical, contemporary, instrumental, pop — are on shuffle and iTunes is creating our playlist. The music stays pleasantly in the background of my awareness until I hear the opening phrase of Happy Xmas.

“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 my work. I close my eyes and listen to the familiar, comforting melody.

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Exquisite Grief

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.

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