Tag Archives: dying

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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And So This Is Christmas … Let The Grief In

Image by Pixabay

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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Eulogy To My Mother

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 garish sun.

William Shakespeare

Wallow High School Senior Photo 1961

Patricia Ann Lyman Pullen-Jones, a 1943 New Year’s Eve baby, was from Bozeman, Montana. And Wallow, Oregon. And Monmouth and Salem and Coquille, Oregon. And Fort Collins, Colorado and Fort Meade, Maryland and Davis, California. From Phoenix, Arizona and Thousand Oaks, California, and for a short time, Taos, New Mexico. For the past 17 years, she was from her beloved Portland, Oregon.   She was from moving more times than anyone could count, except perhaps the faithful who, by her side, lifted mattresses and refrigerators and filing cabinets onto U-Hauls trucks. Pat was from making a home wherever she went; from a plethora of house plants suspended in macramé slings, sunflower artwork, ‘Bloom Where You Are Planted’ needlepoint, and The Desiderata with its burned edges, decoupaged onto a scalloped walnut plaque that hung in every living room in every house in every city. She was from a cat on her lap and a book in her hand.

Patsy was inescapably from her family: her mother, Katherine Ivannie Moore; her father, John Williamson Lyman, her big brother, J.W., who died at ten when she was only four years old, from her sister, younger by two years, Katherine Gwen and her baby sister, Doris Jane. She was from small towns and Rainbow Girls, and the newspaper her father owned (and where she worked); from a high-brow, journalistic lineage; from writers, from poets, from intelligence. She was from class.

Patricia was from skipping a grade and attending St. Paul School for Girls in Walla Walla, Washington, and from returning home to Wallowa High School and the friends she’d grown up with. From ballet and piano and theatre and baton-twirling and reporting for the school paper. From sewing her own prom dresses and covering her shoes with satin to match. She was from talent.

She was from marrying her high school sweetheart who called her Trisha, and following him across the country as he became an officer in the army, from putting him through veterinary school. And after 11 years, painful divorce. From single motherhood and singing her babies to sleep and kissing their fevered foreheads. From teaching them responsibility and manners and the names of wildflowers. She was from mama bear and don’t-mess-with-my-kid and you-and-me-against-the-world. From second chances and late-in-life babies who waited until the right time to come.

She was from three marriages and four children; Lisa Charmaine, Stephen Maynard, Heidi Ann and Sarah Elizabeth; from ten grandchildren, Melissa and Jeremy Buehner, Sydney and Haley Kent, Charles, Bronson, Isabella and Joseph Pullen, Gabriel Rabbat and Holden Collins, and one and a half great-grandchildren, Ashton and baby boy (or girl) Buehner yet to born, and with whom she dances now, whispering, “I’m your Grammy.”

Patricia was from tradition. From ham and twice-baked potatoes and peas and cheese on Christmas, from jello molds and casseroles, from lace tablecloths and felt wall-hangings. From putting in the Thanksgiving turkey and going to a movie with her kids while it roasted. She was from knitting needles and spinning her own wool; from handmade slippers and sweaters and hats and gloves. From oral traditions and stories and poetry. From re-finishing furniture and re-wiring electrical circuits and re-building computers. She was from re-cycling before re-cycling was en vogue. From flushing the transmission, replacing the starter, and installing the windshield-wiper motor on her car. From cabinets full of tools; from YouTube tutorials.

She was from Nordstrom style on a Goodwill budget and holding her chin up and pulling herself up by her bootstraps. She was from fortitude and determination and stick-to-it-iveness and elbow grease. She was from mind-your-own-business and what-goes-around-comes-around and create-your-own-reality.

She was from kisses on the lips and hugs that consumed, from frequent I love you’s and a mother’s intuition. From mothering the motherless, filling the void of their need and taking them as her own adopted children. She was from mother-love big enough to extend to her nephew, Njuguna and nieces, Randee and Cierra, acting as fierce protector and advocate, and never letting go. From making sure they stayed safe and connected, that they felt important and most of all, loved.

She was from teaching: her children, her students, her friends, and everyone around her. From standing with those who could not stand on their own. From liberal politics and feeding the hungry and sending money she didn’t have to women in war-torn and developing countries.

Pat was from loving everyone she met, and all those she met, falling head over heels in love with her. From loud, open-mouthed laughs and saying what’s on her mind and not caring what anyone thinks and swearing a blue streak. From cups of ice filled with Jim Beam and Diet Dr. Pepper, with no lid. She was from spills, and spilling over.

She was from classical music and a quiet life and simplifying. She was from tech savvy and Facebook and the internet. And texts made indecipherable by autocorrect. From many connections with many people, in her physical space and in cyber space. From loving the ones around her, and missing the ones who were not.

Pat was from MS, from nerves worn thin and the world too loud, from skin too sensitive and a heart too full, primed for love, and always broken wide open. From a cane that sat in the corner she refused to use. She was from living and dying on her own terms.

Where she was from is clear to anyone who loved her, and she will be missed immeasurably, but now, it’s about where she’s going. A place of light, brilliant and radiant, as vast as the ocean, as tall as the mountains. She’s returned to the ‘one-ness’ as she often said. She’s not left us, she is merely in non-physical form and in her death, in her own transcendence, she brings healing to her family; spontaneous, exhilarating, joyful healing that washes clean the wounds of human experience, leaving only love.

Love of a purity and magnitude beyond words. Love that is larger than we can comprehend. Love that she herself has become, encompassing and holding us in her embrace. We feel her in the breeze across our face. We feel her in the birds that swoop and soar. We feel her in the full moon as she rises over the blue planet. And if we are lucky, we see her in our dreams.

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

The blue planet with her mountains
Now as always be my territory.
The blue planet with her rivers
Now and always be my hunting ground.
The blue planet with her cities
Now and always be my home ground.
The blue planet with all my goals
Now and always be my victory!


The Grandmother of Time, a Woman’s Book of Celebrations, Spells and Sacred Objects by Zsuzsanna E. Budapest

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In Her Image

Sometimes I feel like a motherless child
Sometimes I feel like a motherless child
Sometimes I feel like a motherless child
A long way from home

African-American Spiritual

Katie Lyman
Age 20, circa 1933

I’m going to lose my mother. It’s an inevitability I never used to think about. My grandmother, Katie lost her mother in 1920 when she was only seven years old. She was the second of five children and the oldest daughter. Separated by scarcely more than a year, the first three were born before her parents divorced. Her mother remarried and after a four-year gap, two more babies were born in quick succession. Katie’s stepfather moved the young family from the city to a rural farm in Wyoming when the littlest were two and one and her mother, Loretta, was eight months pregnant.

My Grammy wrote in her memoirs, “I remember snatches of my mother. It seemed she never sat down at the table because she was always waiting on we kids and Papa.” From my 21st century vantage point, I can only imagine how exhausting and laborious this 24-year-old mother’s life was, raising five small children on the prairie, without modern conveniences, while pregnant. Again. Before they were settled in the new homestead, Loretta’s sixth child was stillborn. Flooding prevented the doctor from reaching her, though we can’t know whether it would have made any difference. She became very ill in the days following but managed to send a letter to her mother, Tennie, saying the baby had died but she ‘supposed she’d be all right.’ Without the convenience of modern technology, that letter didn’t arrive until 2 weeks later, and on the same day as a different letter which carried the news that her daughter had died.

In Katie’s words, “. . . [they] took her to town in a spring wagon with a bed made in it. It was the last time I saw her alive. She said, ‘Goodbye kids. I’ll be back in a day or two.’ I had such an empty feeling. I went behind a tree and cried.”

I was 18 when I left home for the first time to attend college and I missed my mother, Patricia, deeply. A vocal music major, I sang with an elite a cappella choir. Every day at 1:00 pm we rehearsed, our voices painting tonal landscapes in which I lost myself. The eight-part harmonies of “Sometimes I Feel Like A Motherless Child,” wrapped around me as the haunting melody, in a minor key, wept with visceral sorrow, expressing the universal loss; a child without its mother. I was reminded of my grandmother and how she was set adrift so young, alone in the world without an anchor to keep her safely harbored. I wondered, what happens to a girl when her mother dies before she’s become a woman herself. How does she know who to become? And who will show her who she already is? A mother shapes her daughter by simply being. Not nature verses nurture; the unfolding lies in both.

There is something profound in the biological connection between a mother and her daughter that transcends the quality of their relationship or the amount of time spent together. The genetic design that serves as a blueprint for the subsequent generation exists despite circumstance. Daughters can sculpt themselves, choosing how they manifest their best potential, but DNA maps their identity; the double helix provides the framework on which they build themselves. We emerge from those who come before us, carrying their pedigree within; there is no escaping our lineage.

At times, I’ll admit, this is the very thing I’ve rejected—the sameness. When face-to-face with the likeness, I balk and break away, accentuating my difference: I am my-SELF, not a copy of my mother and aunts and grandmother. And yet, at other times, I embrace my tribe with pride and solidarity; the familiarity claims me and I cannot deny my own belonging.

My life unfolded with similar patterns to my mother and grandmother. My grandmother was the eldest daughter. My mother was the eldest daughter. I am the eldest daughter. My grandmother had three daughters and one son, and her youngest, a daughter, was born when she was 40. My mother has three daughters and one son. Her youngest was a daughter, born when she was 40. I have three daughters and one son, and my youngest, a daughter, was born when I was 40. And we have more than numbers in common. We come from strong women; pioneer stock with do-it-yourself independence. We come from mental illness and trauma and divorce. We come from creativity, talent and passion, fiery tempers to match. We come from tender hearts and soft bodies and soothing hands.

I am my mother. I am not my mother. I want to be like my mother. I want to be nothing like my mother. All are true. And one truth remains superlative, no matter how old, we need our mothers; as babes and teenagers, as young mothers ourselves, as aging adults. To be nurtured and comforted, to be cherished and reassured; these are needs we do not grow out of. The simple presence of one’s mother on the planet provides the possibility of a light in the darkness. And regardless of conflict or resolution, intimacy or estrangement, issues past or present, in the end, forgiveness clears the space for only love to remain.

When Katie neared the end of her life she said to her daughter, “When I can’t live alone, will you come and get me?” And Patricia–my mother–did.  Instrumental in the sacred metamorphosis, she gently ushering her mother out of the world, just as her mother did, bringing her into the world.

It’s nearing the end of my mother’s life and the loss has already begun; the grief is nudging me, whispering. A mother’s first instinct is to shield her child from pain, but she cannot shield them from the pain of her own death, try as she might. I’m going to lose my mother, and soon, yet I feel the stirrings of my ancestry lending me strength. I sense the circle of grandmothers bringing me peace. Tennie, mother of Loretta; Loretta, mother of Katie; Katie, mother of Patricia; Patricia, mother of Lisa; we are linked, one to the next, and an unspoken knowledge pulses between us: a mother cannot be lost. She is connected to her children forever. Wherever we go, we carry our mothers with us and we are never far from home.

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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.

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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.

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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.”

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Filed under Aging, Family, Loss, Marriage, Parenting

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. 

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