Tag Archives: Cancer

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. 

12 Comments

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

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.

Leave a Comment

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

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

Leave a Comment

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

The Light Between Us

Image by StockSnap from Pixabay

One love, one blood, one life.
You got to do what you should.
One life with each other, Sisters and Brothers.
One life, but we’re not the same.
We get to carry each other, carry each other.

One, U2

She doesn’t even know them. Not personally, anyway. Connected by three degrees of separation, she’s a friend of a neighbor of the family, this mom, dad and two sons, leading ordinary lives until a few weeks ago when their world was up-ended when the youngest brother received a shocking diagnosis: Stage 4 Medulloblastoma. She doesn’t know them, but no matter. She, too, is a mother, and that’s enough. Today she’ll shave her head for an 8-year-old boy she’s never met.

Movie-star gorgeous, sitting tall and poised, her hands shake in her lap.  She is prepared to be rendered hair-less. Bald. A statement of undeniable solidarity. Long, silky tresses gathered into ponytails sprout from her head, Medusa-like. Her gift is a double offering as the endowment of the hair itself will go to Locks of Love to make wigs for children who have lost theirs. Children like Aiden.

The lights on stage are bright. She squints, looking out over the darkened room. The typical late night crowd of the live music venue has been replaced this Saturday morning with people of all ages. The place is packed. With barely enough room to move, little ones are carried and bigger children are pulled by the hand through clumps of people as their parents edge past to congregate up front. Food vendors and silent auction items line the walls. The community has shown up. They intend and expect to give their support. What they don’t expect is how much they will receive in exchange.

Suspense hangs in the air as the clock ticks down to show time. In the spotlight, three more women–mothers, all of them–sit on folding chairs, draped in plastic capes snapped at the back of their necks. One lives next-door to the family, grown close as neighbors will, by the proximity of their shared lives over the span of years. A drink in the driveway after work, a rant of parenting frustrations, a new gardening idea, a remodeling project. A sick child. Dark brown wavy hair hangs past her shoulders and bangs frame her pretty face.  Brushing a tear from the corner of her eye, she blinks her long eye lashes; extensions that, along with big earrings, will soon accessorize her new look.

The next woman’s hair, thick and black, has been divided into segments, also going to Locks of Love. She smiles broadly, exuberance radiating from her face. Aiden and her young son are best friends and the families neighbors. The boys went to school, camped and rode scooters together until recently. Until the news.

It started with headaches that worsened. Doctor appointments revealed nothing conclusive, but Aiden’s parents persisted. Asking questions, insisting on more investigation, tests and more tests were performed and finally, a 2 ½ inch tumor resting on his brain stem was discovered along with other masses in his brain and tumors on his spine. Not what anyone wants to hear, the family had their answer: a rare and aggressive form of cancer. And with it a surreal new reality filled with surgery, hospitalizations, drugs, finding the best treatment options available, and relocating far from home to get it.

Mom and Dad are Skyping with Aiden today from his hospital room.  Technical difficulties threaten to thwart success and the disappointment is palpable when the connection drops.  After a few more tries, suddenly, there is Aiden, larger than life, yet with a vulnerability that makes him appear small no matter how much of the wall is covered by his projected image. Cheers go up from the throng when this little boy comes into view. His parents lean into the camera and smile their gratitude. The shavees blow kisses and shout their hellos. And with the family’s presence, preparations are finally complete. It can begin.

Excitement buzzes through the audience as people whisper their amazement to one another.

“They’re so brave.” 

“I could never do it.” 

“Can you imagine what they’re going through?”

Referring to the other mothers, these things can also be said of Aiden and his parents. In the air, something magical emerges, an alchemy of love beyond description, and it is the last woman on stage who has made it happen.  Neither a neighbor or a stranger, this mother is an acquaintance, a friend of a neighbor, who socialized with the family casually at barbecues and birthday parties. For years she knew that one day she’d make this choice, for many reasons and many people, not the least of whom is her own mother who died with no hair on her head after enduring not one, but two bouts with two different types of cancer. And the cruelest truth is this: the second cancer was caused by the curing of the first. This woman is colorful from her sassy chin-length brunette mane streaked with red and purple, to her shining eyes and dimples etched deeply into her round cheeks. She radiates joie de vivre even when her voice quivers with emotion during her welcome speech.

Initially, she envisioned a dare; a fun, gutsy campaign culminating in a bold public display that would garner cash, cold and hard, for the family in need. “How much would you pay,” she queried, “to see me shave my head?” When the other three added their momentum, issuing their challenge, a movement was born.

“What are you willing to give to this family if we are willing to cut off all our hair?”

Who wouldn’t admire them enough to donate money, based on their chutzpah alone? No doubt, funds will be raised, but more than money, the rallying of a community around one family garners energy. Efforts expanded as more and more people volunteered, good people who wanted to do something meaningful.  Besides these four, at the end of the day, dozens of others, women and men, mothers and fathers and uncles, even Aiden’s classmates—both girls and boys—will have stepped up and joined the ranks of the hairless to say, “We’re with you.”

On stage, they reach out, hand to hand, forming a linked chain, shaking and laughing and blinking back tears. There’s no turning back. The time is now.  And as this realization takes hold, the noisy, celebratory atmosphere is charged with a profound undercurrent of intensity and an overtone of the sacred. Enrapt, people find themselves strangely moved to tears. For some, a strong and unexpected reaction. These mothers are brave; it is no small thing what they do. It takes guts, but also inspires awe and reverence. Do they know how brave they are?  Possibly, but they would tell you that their courage pales in comparison to the bravery being asked of one small child.

He could be any of theirs, this darling boy with liquid brown eyes and a smile to melt a mother’s heart, who likes snow and ice cream and Dr. Pepper, this typical second-grader who loves his family and his dogs and his pet hamster. A vibrant, happy kid who wants nothing more than to play with his friends–and the chance to grow up. This boy, he is all of theirs.

With a hairdresser for each, the shearing commences simultaneously. Razors are set to scalps. Quick, deft strokes reveal rows of bared skin. Whoops rise up from the house as sheaths of hair fall to the floor and ponytails are severed like dismembered limbs. The impact is powerful. Tears run, unheeded now, down faces, falling to the floor with the locks of hair. This has become far more than a benefit. It is a sacrament. The degrees of separation between neighbors and friends and acquaintances, even strangers, merge and blend until no division exists and all are encompassed by a tangible sense of belonging.

Newly shorn, the women huddle, arm-in-arm. Exhilarated by the fulfillment of their conquest, they laugh through their tears. In disbelief they can’t resist reaching out to rub each other’s heads, now lightened, the weight of all their hair, gone. And the translucent image of Aiden and his parents is cast across the stage, over all of them, and reflected back to those watching. Lighter than air, love lifts the heaviest of burdens and illuminates the soul.  Stripped down, love bares the beautiful, naked truth: no one is ever alone.

Leave a Comment

Filed under Babies, Enlightenment, Gratitude, Motherhood

Making Tear Soup

Tear Soup“Are you going to Colorado tomorrow, Mom?”

Sydney stands in front of the refrigerator and asks the question for the third time this morning.

“No, honey.  Two weeks, remember?  In two weeks.”

I gently nudge her out of the way to open the door and place the milk jug on the top shelf.

“Two weeks. Yes.” She repeats to herself. “So, not tomorrow?” she asks, stepping towards me.

“Nope.  Not tomorrow,” I say, bending around her to put the oatmeal in the cupboard.

“Where’s Dad?” she asks, following me to the sink where I rinse breakfast bowls, our conversation a déjà vu of earlier when I ladled the hot cereal into these same bowls.

“Dad’s at PaPa’s, remember?”

“At PaPa’s?”

Sydney typically wants reiteration of our comings and goings—repeating the schedule outloud makes her feel secure—but lately, she’s been needing extra reassurance that her Dad and I will be around.  Lately . . .  since her grandmother died of leukemia.

“Yes, at PaPa’s house. They’re watching movies and having dinner,” I answer, placing the dishes in the dishwasher.

“Having dinner?”  She echoes.

“Mm-hmmm,” I reply, looking below the sink for the dishwasher detergent.

Sydney clears her throat, then coughs into her elbow.

“Um, Mom?  Is Dad coming home tonight?”

I take a deep breath.  Patience, Lisa.

“No, remember?  Dad’s staying the night to keep PaPa company so he’s not sad and alone.”  I pour soap into the dispenser, shut the lid and press the start button.

“Because MeMe’s dead, right?” she adds.

There it is.  I wipe my hands on a dish towel and come close, bending down to look at her.

“Right, honey. MeMe is dead.”

Her eyebrows shoot up and her eyes open wide.  She pushes her glasses up on the bridge of her nose, sniffs, and tucks the hair behind her ears.  But she doesn’t cry.  She hasn’t cried.

Children grieve differently than adults, and differently from each other. Refamiliarizing myself with the work of Dr. Elizabeth Kübler-Ross, who in 1969 first proposed the five stages of griefdenial, anger, bargaining, depression and acceptance, reminds me that the phases can be in any sequence, intermittent or overlapping, or even skipped altogether. As a parent, I need to help my children with their grief work as well as tend to my own.

Both girls have been a bit stoic—they can’t possibly understand that their lives have changed irrevocably—though I expect when Thanksgiving and Christmas and their birthdays come around, MeMe’s absence will trigger a new level of realization.  And especially with Sydney, I wonder how much she can conceptualize about the permanence of death.  They both loved their grandmother and will undoubtedly miss her, but it’s been concerning to me they don’t seem more upset.

A package from a dear friend arrived like a long distance hug. Tear Soup: A Recipe for Healing After Loss, written by Pat Schweibert is a consoling story of Grandy who, after suffering a big loss sets out to make tear soup from scratch. Haley and I cuddled up on my bed and read how Grandy chose her largest pot to make her soup because she would need plenty of room for all the feelings and tears to stew in over time.

“. . .  she slowly stirred all her precious and not so precious memories into the pot. Grandy winced when she took a sip of the broth.  All she could taste was salt from her teardrops.  It tasted bitter, but she knew this was where she had to start.”

As I read this sweet but profound metaphor, my own tears began to flow.  Haley had voiced sadness, but hadn’t cried yet.

“I want to cry but I can’t.  I feel like my emotions are locked up in a drawer and I can’t find the key,” she confessed precociously.

Page after page, the book poetically and artfully validated the human experience of bereavement.  Paragraph by paragraph, the words described our unique, acute experience of losing MeMe, and as we read, Haley found her tears.  “Tear Soup is helping us cry,” she said, laying her head on my chest, letting her tears fall on my shirt.  Together, we made tear soup of our own.

As I’m putting the girls to bed that night, Haley says, “Mommy, I miss MeMe.”

Matter-of-factly, Sydney says, “We have the same name: Sydney Kay Kent, Linda Kay Kent.”

“Yes, Sydney,” I say.  “You are named after her.”

Haley asks,  “Why aren’t you sad, Sydney?” her chin quivering.

Sydney answered calmly, “Well, I feel a little bit sad.  I heard Mom cry and I heard Dad cry and PaPa.  But I heard MeMe say, ‘I love you.’  And . . . I danced for her.”

Which was true.  After two hours of greeting friends at the visitation, Sydney had kicked off her shoes and pirouetted across the room to “Wind Beneath my Wings,” closing her eyes and moving expressively to the music in front of the podium which held vases of overflowing yellow daisies, a framed picture of Mom and a small wooden box holding her ashes, beautifully hand-crafted with a ceramic angel atop it and a plaque that read:

“Linda Kay Kent,

June 25, 1944  –  September 7, 2013”

Haley’s eyes squeeze shut against her now-copious tears as she says to her sister, “Don’t you know you’ll never see MeMe again?”

I sigh thinking, no, she doesn’t know.  Sydney doesn’t understand and might not ever.

But then Sydney says this: “Mom, every morning I wait for the bus. I feel her.  MeMe’s in the wind.”

Elusive as it seems, she’s onto something.  Maybe Syd is keeping her MeMe close in subtle ways that we can’t quite grasp, sensing her presence with a calm knowing; sensing her everywhere.  Maybe she doesn’t feel the same sense of loss because for her, MeMe isn’t completely gone.

Wrapping my arms around both my daughters, I reach for the same reassurance; for myself and for them.  Although I miss her, I take comfort in the thought that if I look, I can yet find her; in the wind through the trees, in the birds as they soar, and in the sun’s glorious rays that break through the clouds.  If I listen I can hear her voice and her laugh and feel her live on in my heart.

Our tear soup will be brewing for a long time.  The loss is painful, the memories are sharp and bittersweet, but the love shared is bigger than all of it.  We’re going to be alright.

Leave a Comment

Filed under Down syndrome, Family, Grandparents, Grief, Letting Go, Loss, Memories, Motherhood, Special Needs

The Only Way Out is Through

ray-of-light-through-storm-clouds

After

Grief lives in our house.  Among the furniture, between the windows and the walls, it sits; thick and unmoving.  Grief rides, heavy, on my chest. I can’t get a good, deep breath these days.  It weighs down my husband’s shoulders and molds his features.  Grief seeps into our nights of restless sleep and dreams of forgetting, of waking, and then remembering.

We lie on our bed listening to the falling rain.  Wet, fat drops pelt the windowpane, punctuating the silence.  He curls up behind me, concave where I am round; our bodies fit together, pieces of a puzzle.  In the stillness, the edges between us dissolve. I fade into him, absorbing his substance. A crack of thunder sounds. I inhale sharply to pull the air into my lungs.  He draws a deep breath in through an open mouth, his chest heaving.  With a sigh, it rushes out.  Together we breathe our mourning.  There is comfort in our solidarity and we close our eyes to accept the brief respite.

It occurs to me that my father-in-law will never hold his wife this way again.

Before

If anyone could cure cancer with sheer will and devotion, it would be him.  He will not leave her side.  He sits, he stands, he paces.  He drinks coffee and more coffee.  He questions the doctors and the nurses and the therapists.  He hopes against all odds.  He isn’t ready.

He sleeps in a recliner pulled up next to the hospital bed.  He covers her hand with his and they talk in the dead of night, recounting their fifty years of shared memories. He helps her try to hang on and when it becomes clear she cannot, she helps him try to let go.

Until a year ago the only loved ones I’d lost were my grandparents who had lived full lives, into their 80’s.  I still miss them dearly and lament their passing.  But tragic death, to those young and taken too soon, by illness or accident had not yet entered my experience.  Within a span of a few months loss hit hard, lodging painfully in my sternum: three deaths; my friend from childhood, my brother’s son, my sister’s husband.  And now, my husband’s mother.

I can’t bear it, but somehow I must.  Staying present to witness, this is the gift I can give my family by marriage.  I am wife, I am daughter-in-law, I am sister-in-law, but my own crisis is significant.  I am losing a mother, too.

I was twenty-eight when I met her.  Newly divorced and unable to travel to my own family far away, I faced my first Christmas without my young children.  My closest girlfriend insisted on taking me home to the bosom of her Midwestern family.  Depression had me in its clutches.  Morose and self-absorbed, I tried to decline.  I wanted to retreat from the world at large and immerse myself in desolation, but, she wouldn’t have it and dragged me across the country to Missouri.

I’d never been anywhere east of Colorado and all I knew were the clichés I’d heard.  Friendly, kind and generous, the stereotypes of folks from the heartland held true, but more than that, these people radiated joy that spread to all within reach; misery didn’t stand a chance when infected with their sunny optimism.  In a noisy house full of activity, my senses were barraged; the smell of delicious food, the comfort of homey Christmas decorations throughout rooms of quaint antiques, the resonance of children’s voices playing and adults laughing and talking all at the same time.  My mother-in-law-to-be welcomed me to her home, without conditions, without judgment, and simply loved me for being myself.  I’d landed in a Norman Rockwell painting and it felt like being wrapped in a warm blanket after coming in from the cold.

I was teased for my big hair and tie-dyed shirt and Arizona ‘accent.’  I gave as good as I got, imitating my future father-in-law’s Missouri dialect, “Well, now, you gotta take and go on past the ray-road tracks, that-a-way you’ll run right into that rest-runt.  I tell you what, have they got great Eye-talian food.  Jim-in-ey!”

We gathered around the large table as plates of turkey and ham and stuffing and potatoes were passed.  I listened to stories from the past, each memory more outrageous, each teller louder than the last, laughter erupting between the words that flew back and forth.  We played board games until midnight and imbibed in PaPa’s famous punch, a delicious concoction of fruit juice, soda and what I’m fairly certain was an entire bottle of Southern Comfort®. And on Christmas morning, when presents were doled out, I was handed more than one with my name on the tag.  Gifts bought just for me.  And not just any gifts; how this woman knew exactly what I would love I’ll never know.  The startling gesture touched me deeply.  Can you fall in love with someone instantly?  How about a whole family?  They had me at “Welcome to Missouruh.”

My connection to her continued through the darkest time of my life.  I felt doubly blessed to have my own mother to soothe my heartache and another mother figure who healed unknowingly, simply by being herself.  More visits and conversations allowed me to observe her ways; her smiling consistency and unflinching positive outlook, her effervescent energy.  I came to know her well.  And as they say, to know her, is to love her.

Three years later, as much a surprise to me as to everyone else, I discovered the love of my life right there in this family.  Her only son, the brother of my best friend, proposed to me and I became a legal in-law, but I was already hers.  I grew in devotion to her like Ruth to Naomi.  She loved my children, not just the Kent babies that came later, but those she inherited, scooping them up and adding them to her brood like they’d been there all along, too.  We were family.

Over more than twenty years and across hundreds of miles we shared happy, contented times, and the inevitable tough times brought us closer still.  But, this?  This is beyond tough.   The worst has happened; Mom is the heart of this family and losing her is unthinkable.

When the call comes it is unexpected and triggers a panic we try, and fail, to suppress.

Steven’s younger sister says, “You need to come.  Now.”

With palpable urgency we throw things in suitcases and cancel appointments and take the girls out of school, making the interminable drive to St. Louis at 80 mph.  Reeling from shock, we don’t speak, but in our racing thoughts, we reach for anything to steady the lurching shift that’s thrown the world out of sync. Mom was okay just last week.  They sent her home to recover from an arduous stem cell transplant, and even if she had a ways to go, she was definitely on the mend.   But, now we know; the transplant didn’t work.  Her body didn’t respond the way we’d hoped.  For fourteen months the cancer attacked her viciously, resisting treatment after treatment.  And now, how unfair, how goddamned cruel, that after all she’s endured—transfusions and surgeries, hospitalizations and procedures that should have granted, if not a cure, then at least more time—after all of it, she’s left with this abrupt, horrifying end.  It wasn’t supposed to happen like this.  She is only 69.

The reality hits when we reach the hospital: she is going where none of us can follow.  Nearly everyone has made it and Mom is surrounded by the ones who love her most; all three of her kids—middle-aged now with kids of their own and even grandkids, her brother and sister, six of her eight grandchildren, and friends who have seen decades. Disbelief rocks us as we grope for meaning in this brutal certainty.

She’s compelled by prescience and though exhausted, will not rest until she has seen everyone, the wrenching goodbyes a sacred ritual.

Special permission is granted to our young daughters to visit.  She touches and kisses her grandchildren and with heroic effort, between wheezing breaths, she helps them understand what’s happening.

“Remember when MeMe said everyone has a time?  Well, it looks like it’s MeMe’s time.”

Her frail voice breaks and she pauses.

“But it will be okay.  Somehow it will be okay.”

They bend over, careful to avoid her central line and oxygen cannula, for the last hug they will ever get from her.  After they’ve left, she weeps, utterly bereft and inconsolable.

Her girlfriend of more than forty years braces for their final farewell, putting a smile on her face before she walks through the door.

“Hey, gal.  Whatcha doin’?”

“Well,” Mom says, barely audible.  “Looks like I’m kicking it over.”

Bantering constantly, regardless of the situation; that’s what they do.  It’s how they say, “I don’t know what I would have done without you this year,” and “I don’t know what I’m going to do without you for the rest of my life.”  They part not with ‘goodbye,’ but ‘see you later,’ and it’s not until she’s down the hall and around the corner that her beloved friend finally lets go and sobs into waiting arms.

It’s my turn.  I need to see her; I need her to know how I feel, but what words can possibly convey everything she means to me?  For Good from the Broadway show Wicked plays in my mind along with the memory of sitting next to her at a live production–my birthday present to her–lyrical voices resonating in the astounding acoustics of the Fox Theatre. If I could, I would sing to her,

I’ve heard it said

That people come into our lives for a reason

Bringing something we must learn, and we are led

To those who help us most to grow

If we let them

And we help them in return

It well may be, that we will never meet again

In this lifetime

So let me say before we part, so much of me is made from what

I learned from you

You’ll be with me like a handprint on my heart

Because I knew you . . .  I’ve been changed for good

Instead, I sit by her bed as she lies sleeping.  Suddenly, she opens her eyes and sees me.  All that’s between us shimmers in the air.  “I love you, Lisa Kent,” she says intensely.  The blessing washes over me.  She knows.  “I love you, Linda Kent,” I answer with tears in my voice.  She knows.

After her goodbyes, the process begins in earnest.  As pneumonia rages, her heart races and her breathing becomes labored—torturous even, as her body fights for each inhalation. A sip of water to moisten her parched mouth, balm to soften her cracked lips, a cloth to cool her fevered head can only ease her suffering briefly.

“Rest now, Mom,” her oldest daughter says.  “Just go to sleep.  We’ll be right here.”

But in between fretful sleeping and waking, she struggles to tell us one more thing. Though she can barely form the words, she manages to utter, “I want us to be a family.”

Worried that without her we will drift apart and let conflict come between us, she is intent that we respect her wishes.

“I want you to love each other and be happy.”

“We will, Mom,” we say in unison.  “We will.”

“Promise?” she pleads.  She cannot let go until she knows we will take care of each other.

“Promise.”

The nurses move around us now as we keep vigil.  Confined to a hospital room, a waiting room and a hotel room, perspective shifts radically and the minutes and hours lose meaning.  Has it been three days or a week? A surreal bending of space and time becomes our existence; there is no longer a world outside this place.

My husband won’t leave. By her bedside, he quietly holds her hand as she sleeps fitfully, though it’s excruciating for him to watch his mother suffer so.  She stirs and asks, in a panic. “Where is Steven?”

In a soft voice he reassures her, “I’m right here, Mom.”  He strokes her cheek with the back of his hand and she relaxes.

Each time she wakes and finds herself trapped in a body wrecked by disease her anxiety mounts.  She is ready and wants to go.  Having made peace with her fate, she needs this to be over.  Mom is leaps and bounds ahead of us in letting go.

The sedatives and pain meds help calm her and the separation begins; she drifts somewhere between here and . . .  not here.  She’s no longer talking.  She’s retreating.   Dad sits on the edge of the bed, facing her, and leans in close.

“You are the love of my life,” he whispers.  “You’ve fought so hard.”

Bringing her hand to his lips he bows his head.  Sobs wrack his body. “Wait for me, I’ll be there soon.”

I can’t bear it.  I turn away from the intensely private moment, my hand covering my mouth.  My eyes search out and find those of my own husband and we both look to his two sisters.  A swelling tide of anguish sweeps us under.

It is morning and her youngest daughter moves the bulky hospital bed, away from the wall with its monitors and machines, and angles it toward the window and the rays of the rising sun.  Peaceful music plays in the background and tranquility eases in amid the tension.

With her last bit of strength, she struggles to lift her eyelids. One shaking hand lifts off the bed a few inches before dropping.  Opening to small slits, her eyes are cloudy and seemingly unfocused, yet as we watch, it appears she is seeing the faces in the room.  Throughout the morning, she moves her hand and tracks with her eyes, lighting on each one of us; an electrical connection pings back and forth, speaking the unspoken.  She is here.  But she is going.  Soon.

It is very quiet when it happens.  Dad has left, kissing her forehead before he goes. “I’ll be right back.  See you in a minute.”

Her ragged breathing slows, and each breath lengthens a fraction.  We continue our watch, each occupied; together, but apart.  Sitting in a chair, I rest my head in my hand and start to sleep, to dream.  For hours, for days, her fight to breathe has become increasingly urgent.  The loud, rhythmic sound churns; the biological instinct for self-preservation.  Then, without prelude, silence.  Something pulls my awareness back and I hear the absence of her breathing.  I wake up and look at her.

She takes another breath.  Then nothing.  Awareness descends on us all synchronously and we spring to encircle her.

Another breath, easier this time.   A pause.   A softer breath, almost a sigh.  A longer pause.  Then another breath .  .  .  that becomes  .  .  .   her last.

“You were the best mother I could ever ask for.  I love you so much,”  Steven cries.

“You held me when I came into the world and I will hold you as you leave,” his sister sobs as she cradles Mom in her arms.

Her heart slows and eventually stops.  Then lightly, she lifts from her body and elegantly glides away.

 After

An ephemeral gap in the storm appears suddenly, allowing brilliant light to bleed through the wooden blinds and warm my face for a moment before dark clouds converge, a pall returning. I roll over to look at my husband.  Eyes closed, he is motionless; yet within, I can feel disquiet stirring; vibrations of pain course through his body.  Sadness hangs in the air.  His mother has died.  Where did she go?  I can’t find her and it frightens me.  She is gone, slipping the surly bonds of earth despite our desperate longing.  She is not suffering.  She’s with the angels now. Yet the cavernous void her absence leaves can’t be quantified.

I cup his face and smooth his brow.  He opens his eyes to look at me, and I see . . .  her.   In his eyes.  He’s always had his mother’s eyes.  I see her in his cheekbones.  And in his smile.  He has her generous nature and tender heart, too.  And brilliant mind and love of cooking.  He came from her.

My spirit soars with this epiphany.  And my babies; they came from their father.  Like Russian stacking dolls, they too, are part of her; shaped by her influence, molded by her image.  In them, she lives on; everything she was, everywhere she was from.

She was from small towns and familiar neighbors and grandma next door.  From gas at 21 cents a gallon and no indoor bathroom and a washing machine hooked up on the back porch.  She was from the chill on a fall morning in Kansas as leaves blew along cracked sidewalks and from laundry on the line, drying in the warm spring sunshine.  From playing board games inside on snowy days and riding bikes outside until dark.

She was from an absent father and an unstable mother.  From a younger brother and sister to look after and from growing up too quickly.  From babysitting at ten and Tasty Freeze at thirteen with a $.75 minimum wage.  From a dance club out of town in an old warehouse and cherry vodka.  From Jan and Dean and Ricky Nelson.

From an office job at Pittsburg State and a handsome fraternity boy from the university.  From young love they said would never last.  From a little white house and domesticated bliss and round babies that bounced on her knee.  She was from washing dishes and washing out diapers.  From friends who became family and raised each other’s kids, who made their own fun on a Saturday night when money was tight.

From the Kool-aid house where everyone wanted to hang out and the mom everyone wished was theirs.  She was from “I’m gonna come down there and spank some butts!” and “Get outta that, dinner’s almost ready,” and “Be home by midnight and don’t drink and drive.”  She was from “You can be whatever you want to be,” and “I’m so proud of you.”  She was from motherhood.

She was from crockpots and homemade macaroni and cheese and chocolate cake and Christmas braid.  From birthdays and Easters and Valentine’s Days cards with cash inside.  From shopping year-round and finding the perfect gift for the perfect person.  She was from boundless generosity.

She was from cross-stitched samplers and Precious Moments figurines and Longaberger baskets.  From Christmas trees in the living room and in the family room and in the kitchen and in the bedroom, decorated with ornaments that aged with her children, each marked with the date and holding the memory of that time.  She was from Santas; on the hutch, the shelf, the table and the stairs.  Old World Santas, black Santas, country Santas and ceramic Santas. She was from Santa himself coming in at the back door, bringing presents to the little ones on Christmas Eve.  She was from trash bags of torn and crumpled wrapping paper and delicious aromas and bellies too stuffed to move.

She was from a house bursting with laughter and life and noise, from her dream of a large family come true.   From shouts of “MeMe!” followed by torpedo hugs around the waist.  From special weekends and movies in the living room and Barbies and arts and crafts and baking cookies. She was from beautiful hands and gentle touches and soft hugs.   From open arms for everyone who crossed her threshold.  She was from acceptance and judging no one.

She was from hard work and dedication.  From eye-glasses and fittings and appointments and patients and co-workers who loved her, from knowing everyone in town.  She was from rising before the sun and falling asleep in front of the TV.

She was from retirement and Grandparent’s Day at elementary school and dance recitals and choir concerts and softball games.  She was from best friends and vacations in the Smoky Mountains and Tybee Island and Santa Fe.  From two couples traveling the country and shopping at the Lake.  From coffee on Saturday mornings and growing old together.

She was from perfume and Pandora charms and Land’s End sweaters and scarves from L.L. Bean.  From new recipes and new bedspreads and new rugs.  From gardens and bird-feeders.  She was from Mid-West Living and O Magazine.  From bookshelves and bookshelves of books.  From Kindles and laptops.  She was from photos on Facebook and photos hung on every inch of every wall.

She was from her entire adult life as wife to her husband, for better or for worse, in sickness and in health.  From forgiveness and steady calm in stormy seas.  She was from dignity and grace and long-suffering.

She was from pink ball caps skewed to the side and Relay for Life and incredible courage in the fight of her life, for her life.  From comforting others even at the end of her own journey.   She was from “Everything’s going to be all right,” and “I love you so much,” and “I’m ready to go.”   She was from pure love.*

Memories and impressions of Mom flood my senses.  The sting of death remains, but I can’t lose her; she’s here.  My breath rushes in and I fill with the Essence of Her Presence.  I exhale  . . . and I begin to weep.  My husband’s arms lock around me quick and tight.  He will hold me as long as I need him to.  As long as it takes.

Grief lives in our house, but so does joy.  The world without her will never be the same, but the sun will come up and the days will go by.  The children will keep growing, and a new life will join the family when our grandson is born in a few months.  We will laugh and celebrate and dream.  And when remembrance overwhelms us, we will cry and rail and grieve again.  There is no escape; we loved her, therefore we are powerless to circumvent mourning.  I can’t bear it, but somehow I will.  By leaning into the grief and feeling it in my bones, by going about living our robust lives and by knowing that the two are not mutually exclusive.

Mom wants us to be happy; she told us that in her dying wishes.  She loved the song, You’ll Be in My Heart, by Phil Collins from the movie, Tarzan, which serendipitously came out the year her granddaughter, Sydney was born with Down syndrome.  The lyrics speak of the protective and nurturing nature of a mother—and if there is anything she was born to be, it was a mother.  I think Mom wants us to know she’s still here, loving us, mothering us and if we listen, if we look, we will always find her.

You’ll be in my heart

Always, I’ll be with you

Just look over your shoulder

Just look over your shoulder

Just look over your shoulder

I’ll be there always”

I love you, Mom.

*Format taken from the poem Where I’m From by George Ella Lyons.

16 Comments

Filed under Aging, Enlightenment, Family, Grandparents, Grief, Letting Go, Loss, Motherhood, Siblings

Give and Take

 

handssoft

You are my love and my life.

You are my inspiration.

Just you and me.

Simple and free.

Baby, you’re everything I’ve ever dreamed of.

 Just You And Me by Chicago

 

“Al, I need ice.”

With a white Styrofoam cup in hand, he bends over and carefully spoons ice chips into her mouth, her lips parched and quivering.  A few pieces drop off the plastic utensil onto her collarbone, the skin exposed where the hospital gown has slipped off a bony shoulder.

“You’re not very good at this,” she says weakly. Her breathing is labored and shallow.  The effort of reaching for the ice and talking at the same time is too much and she lays her head back on the pillow, exhausted.

“Well, whatcha gonna do?” He replies good-naturedly.  “I am all you’ve got.”

Quiet for a few moments, eyes closed and very still, she appears to have fallen asleep. But then, my mother-in-law’s eyes open and she answers irritably, “I’m getting somebody else.  You’re fired.”

But, it’s the cancer talking. And the chemo and the side effects and infections that have devastated her body and threatened to defeat her spirit.

As my husband’s father gently wipes away the melted ice, he smiles and croons, “Oh, I’m fired, am I?  Okay, babe.  But I get to interview my replacement.”

For 50 years they’ve faced life side by side.  For better or for worse.  In sickness and in health. Strong when the other is weak, optimistic when the other is sad, calm when the other is upset.  She is devoted to him and he adores her.  Two souls intertwined; theirs is the ultimate love story.

Young lovers can’t begin to imagine what awaits them; that the family born out of their passion will test their resolve and challenge their allegiance, forcing them to redefine love as they know it.

Years ago, when we were young, I married my best friend.  It’s a cliché sung about in love songs and easily dismissed, at least until it applies to you.  However prosaic it may sound, my husband is my partner, in all things.  He is my co-parent in raising our children, he is my intellectual equal, my companion and comforter and confidante.  The love of my life.  He is my home.

Nonetheless, navigating the constant demands of family life takes a heroic commitment and requires a willingness to place another’s needs above one’s own at times, trusting that it will balance out.  Never static, the relationship is fluid, the dynamics ever-changing, and it’s precisely this ebb and flow through seasons of abundance and seasons of bleakness that secures the longevity of a marriage.

Steven and I have been doing this parenting gig for a long time and the truth is we’re tired and we sometimes take it out on each other.  It’s a known fact that parenting children with special needs can contribute to higher divorce rates, though interestingly one study found that in families who had children with Down syndrome the divorce rate was actually lower than in families with other birth defects or no identified disability.  Predictors of divorce among parents of kids with ADHD, however, showed the divorce rate was nearly twice that of the general population before the child’s age of eight.

So, statistically speaking, Haley’s special needs add more marital stress than Sydney’s. I would concur.  Haley brings an energy to our family that is amazing and astounding, but also overwhelming.

Frequently my mind will spiral into panic when tallying what needs to be done, when, how and by whom until I’m convinced that I am doing everything.  Resentment poisons my thoughts and I can’t see clearly.

“Are you okay?”  Steven asks.  “You seem crabby.”

“I’m fine,” I mutter, crabby that he called me crabby.

And when my husband’s frustration mounts, his accumulating stress has nowhere to go but outward.  His patience is depleted; he is not pleasant to be around.  “Leave Daddy alone,” I tell the girls, giving him a wide berth.

Inevitably in marriage, storms hit.  Some hard.  Rain falls heavy and saturating until we can no longer buoy the other up.  A drowning person cannot save another drowning person.  Misunderstandings, unspoken expectations and harsh words flood and we are in danger of being swept apart by the current.

But gratitude is the ballast that holds fast, and forgiveness the rope that leads us safely back to each other, hand over hand.

At the end of long days I reach for my tall husband as he walks into the kitchen and wrap my arms around his waist.  It takes only ten seconds to feel the bands around my chest begin to loosen.  He rubs my back.  I close my eyes and breathe.

Then, I feel Haley dive between us, using her body as a wedge to leverage us apart, making a parent sandwich of herself.

“Group hug!” she yells, her voice ringing through the kitchen.

And . . . the moment is over.

Yet within this chaos of everyday life, our love solidifies into an unbreakable, brilliant diamond; under pressure, the mundane is transformed into the extraordinary.

I watch him from across the room when we’re enjoying the company of friends: the expressions I know so intimately; the way his lips curve up at the corners, showing his gums when he smiles; his eyebrows, animated when he talks, and the dimples that mesmerized me when we first met, still flash when he laughs.  Not as young now, but our life is written on his beautiful face.

He stands with one foot on the low rung of a stool, his legs long in slim jeans, sporting a graphic t-shirt and trendy glasses, holding a craft beer in one hand and gesturing with the other as he converses.

I fall in love all over again, but harder.  I see not only an attractive man, but a man who fixes my computer, and makes me laugh, and runs through the mud in a Viking helmet with me.  I see a father who camps in the backyard with his girls, and teaches them about fish and birds and nature, who strokes their cheeks tenderly with the back of his hand when he puts them to bed; a father who endures long hours, sacrificing his own leisure so he can pay insurance premiums, mortgages and college tuition, who generously provides the good things in life for his family, who gives and gives and gives and gives.

I hear not only his voice, but the clang of a lug wrench on concrete as he replaces the brakes on my car, the rhythm of the washing machine as he does 52 loads of laundry, carefully separating my Lululemon to hang-dry.  I hear the soft click of the bedroom door as he tiptoes away on a Sunday morning, letting me sleep.

He feels me staring and turns.  “I’ve got you,” I say without speaking when our eyes meet.  “I’ve got you,” he answers.

Ours is an ultimate love story.  Tested and true, redefining love as we knew it.

Like my parents-in-law.

Love is sleeping on a roll-away bed in a hospital room, an arm’s length from his wife.  Love is fighting the battle of a lifetime, with unending courage so she can stay longer with her husband.

“I was supposed to have more time,” she sighs.

“You’re not dying today,” he answers.  “Not today.”

Leave a Comment

Filed under Aging, Family, Loss, Marriage, Parenting

The Essence of Her Presence

mother daughter

She walks in beauty, like the night

Of cloudless climes and starry skies . . .

Lord Byron (George Gordon)

When I was 13 I sketched my mother’s profile in church.  Regal, she sat with her chin tilted upward, receiving enlightenment from the pulpit, her features arranged serenely.  Thick, auburn hair hung past her shoulders.  The long feathered bangs of 1976 framed her face.  To me she was breathtaking.    She was the sum of her parts and more; soft hands that soothed, full lips that pressed to a fevered forehead, arms that embraced, a gentle voice that lulled away hurt.

Today the pencil drawing, its edges burnt and the pulp decoupaged onto wood, hangs in her apartment, my adoration for her captured; a living thing.  From floor to ceiling, photographs of her children line the walls.  She wraps us around her like armor to do battle with her longtime companion, multiple sclerosis.  From 2,000 miles away I resonate her pain.  I mourn her loss, little by little.  Attacking itself, her body betrays; her mind, too, keeping its secrets and misplacing her memories.

Continue reading

1 Comment

Filed under Aging, Enlightenment, Grandparents, Letting Go, Loss, Motherhood, Parenting, Self-Care

In the Love Place

And so lying underneath those stormy skies
She’d say, oh, I know the sun must set to rise.

Paradise by Coldplay

~For Richard, Heidi and Gabriel~

It was Sunday afternoon. The weekend that seemed to stretch out enticingly before me on Friday was, for all intents and purposes, over. I sat on the couch, mindlessly surfing Facebook, playing Angry Birds. I had the ‘Sunday blues,’ that restless dissatisfaction that strikes around 5:00 p.m. when the realization that a weekend filled with relaxation and leisure is just not going to materialize. This happens frequently. My days get filled with grocery shopping, running kids to activities, projects at home, work issues, and other mundane tasks. My fun time gets relegated to Saturday night after the kids go to bed and I pass out halfway through a movie.

I felt a shift coming in the weather foretold by the pounding headache that stormed my skull. Sitting alone I looked out the window at the gathering clouds and malaise settled over me as I thought with a sigh how the girls would be home shortly. I’d have to get up from this couch to start the nighttime routine: wrangle up dinner, corral kids into the shower and herd them to bed. I’d go through Friday folders (Sunday night folders, let’s be real) and look ahead to everyone’s schedules, gearing up for another busy week.

But that was all before I got the news that my brother-in-law had died. Just 45 minutes earlier, while I was lamenting the end of the weekend, he’d taken his last breath and given up the battle he’d waged to the finish. Though he and my sister were separated, in the end, their differences didn’t matter. The strife and tension between them healed spontaneously on his journey from this plane to the next. When cancer took over his body, she took him into her home. She tended to his dying and in the process found forgiveness. Her focus was on creating lasting memories for her son, their son.  He is seven, my nephew, much too young to lose his father. And his father, much too young to lose his life.

Richard suffered in pain and struggled for every breath. He had not come peacefully to his death. The denial tortured both he and Heidi. When his agitation became too great, the meds gave relief and he drifted in a morphine-induced fog. My sister lay down with her husband, pressing her body to his, her mouth to his ear. 

Continue reading

Leave a Comment

Filed under Family, Letting Go, Loss, Marriage, Siblings, Sisterhood, Special Needs