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.”

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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.

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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.

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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.

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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.

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

The Only Way Out is Through

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.

Image by FelixMittermeier from Pixabay

We lie on our bed listening to the falling rain. Wet, fat drops pelt the windowpane and punctuate 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 stay 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 had 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 decor and quaint antiques, the resonance of children’s voices playing and adults laughing and talking all at the same time. My future mother-in-law welcomed me to her home, without conditions, without judgment. She simply loved me for being myself, a self she barely knew, but loved because her daughter loved me. 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 wild hair and tie-dyed shirt and Arizona ‘accent.’ I gave as good as I got, though, 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, boistesrous 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 for me. And not just any gifts. How this woman knew exactly what I would love I will 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 me 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. “Whither thou goest, I will go.” She loved my children, and not just the Kent babies that came later, but those she inherited,my big kids, 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 sister, my best friend, Traci says, “You need to come.  Now.”

With palpable urgency we throw things in suitcases, 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 when they sent her home to recover from an arduous stem cell transplant. 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 did not respond the way we’d hoped. For fourteen months the cancer attacked her viciously, resisting treatment after treatment, sometimes with near-fatal reactions. How unfair, how goddamned cruel, that now, after all she’s endured—transfusions, surgeries, hospitalizations, procedures that should have granted, if not a cure, at least more time, how devastating that she is left with this abrupt, horrifying end. She is only 69. As she said, “I was supposed to have more time.”

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

Compelled by prescience, though exhausted, she will not rest until everyone has been seen, the wrenching goodbyes a sacred ritual.

Special permission is granted to our young daughters to visit and when they enter shyly, she touches and kisses her them. With heroic effort, between wheezing breaths, she helps them understand what’s happening.

“Remember when MeMe said everyone has a time?  It wasn’t time before but, well, it looks like it’s MeMe’s time now.” Her frail voice breaks and she pauses. “But it will be okay. Somehow it will be okay.”

They bend over her, careful to avoid the central line and oxygen cannula, for the last hug they will have. And after they’ve left, she weeps for the first and only time, utterly bereft, inconsolable.

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

“Hey, gal.  Whatcha doin’?” she says in a casual tone.

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

Bantering constantly, regardless of the situation, that is 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 ya later.’ It’s not until Mom’s beloved friend is down the hall and around the corner that she finally lets go, collapsing into her husband’s waiting arms.

I’ve waited my turn, respectful of the pecking order. But I need to see her. I need her to know how I feel, but there are no words to convey everything she means to me.  For Good from Wicked plays in my mind along with the memory of sitting next to her at a live production of the Broadway musical—my birthday present to her—as lyrical voices resonated in the acoustical glory of the Fox Theatre. If I dared, 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 quietly by her bed, willing my love into her awareness 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. “I love you, Linda Kent.” Tears are in my voice.  She knows. She ​knows.

Her goodbyes complete, the dying process begins in earnest. As pneumonia rages, her heart races and her breathing becomes torturous as her body fights for each inhalation. A sip of water to a parched mouth, soothing balm to cracked lips, a cloth to a fevered head, these only ease her suffering briefly.

“Rest now, Mom,” her oldest daughter, Lori 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. Barely able to form the words, she manages to utter, “I want us to stay a family.”

She’s worried that without her we will drift apart, let conflict come between us. She is adamant, and rightly so that we respect her wishes.

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

“We will, Mom,” we say in unison. 

“Promise?” she pleads. She must know we will take care of each other before she can let go.

“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. She stirs and asks in a panic. “Where is Steven?” though her hand is still encircled in his, their long fingers cut from the same pattern.

“I’m right here, Mom.” He strokes her cheek with the back of his hand. Reassured, she relaxes back into the pillows.

As the hours drag on, each time she wakes, finding herself trapped in a body wrecked by disease, her anxiety mounts. “Unplug me,” she says, though she is not on life support. With courageous acceptance, Mom is ready to go, leaps and bounds ahead of us.

Soon, the sedatives and pain meds help calm her as the separation begins. She drifts somewhere between here and . . .  not here. She’s stopped talking, retreating. ​

Dad sits on the edge of the bed and leans in close. “You are the love of my life,” he whispers. “You’ve fought so hard.” He brings her hand to his lips, bowing his head.  Sobs wrack his body. “Wait for me, I’ll be there soon.”

I cannot bear it and turn away from the intensely private moment. My hand covers my mouth and my eyes search for my husband’s. We look to his two sisters and an unspoken message travels between; we surrender to the swelling tide of anguish.

The next morning, Traci pushes the bulky hospital bed and the attached monitors and machines away from the wall and angles it toward the window. The rising sun streams in. Peaceful music plays quietly. Tranquility eases the tension for a blessed moment.

With her last bit of strength, she lifts her heavy eyelids a fraction. With incredible will, she lifts a shaky hand off the bed a mere few inches before dropping it. Through the small slits, her eyes are cloudy and seem unfocused. Yet as we watch, we swear her gaze moves slowly from face to face, tracking, lingering on each one of us. An electrical connection pings back and forth. She is here. But she is going. Soon.

It happens in a whisper. Dad and Lori have left, telling her they’re just going to grab some lunch. Kissing her forehead, he says, “I’ll be right back. See you in a minute.”

Steven, Traci and I, continue our watch in silence, together, but apart. Sitting in a chair, I rest my head in my hand and start to sleep, to dream.  For days now, her fight to breathe has become increasingly urgent.  The loud, rhythmic sound churns, a biological instinct for self-preservation. It’s become the background noise, a soundtrack to dying. As I drift further, something pulls my awareness back, as if I’ve been tapped on the shoulder. The lack of the repetitive churning sound slowly enters my consciousness. Then, abruptly, I wake up. Watching, I see her take a quieter breath. Then nothing. Awareness descends synchronously on us all and we spring to the bedside.

We wait and there’s another breath, easier this time.  A pause.  A softer breath, almost a sigh. A longer pause. Then another breath .  .  .  that becomes  .  .  .   her last.

Traci sobs and cradles her mother in her arms. Steven lays his cheek next to hers. I run for the nurse and hear my husband cry, “You were the best mother I could ever ask for.  I love you so much.” Down the hall I hear Traci wail like a child.“You held me when I came into the world and I will hold you as you leave.”

The nurse confirms it is happening and removes the oxygen mask. His hand on her chest, my husband feels her heart stop. We all feel it when she lightly, elegantly lifts from her body and 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 face my husband.  Eyes closed, he is motionless, yet within, I can feel his disquiet. I sense the vibrations of pain coursing through his body. His mother has died. And 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 for her to stay. I know she no longer suffers. I believe she’s with the angels now, yet the cavernous void in her absence can’t be quantified.

I cup his cheek and smooth his brow. He opens his eyes to look at me and I see . . .  her eyes. He has 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. I’m acutely aware how he came from her.

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

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 hung on the line to dry in the 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 working at Tasty Freeze at thirteen for $.75 an hour.  From a dance club out of town in an old warehouse and cherry vodka and 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 with the mom they 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 first and everything else second.

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 (played by PaPa) coming in through the back door on Christmas Eve with presents for the little ones. 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, best friends, traveling the country and shopping at the Lake. From coffee on Saturday mornings and growing old together.

She was from signature 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 wall.

She was from spending 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 to cover her balding head and Relay for Life and incredible courage in the fight 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 my mother-in-law flood my senses. The sting of death remains, but losing her is impossible: she’s here. My breath rushes in and I’m filled with the Essence of Her Presence. I exhale  . . . then begin to weep. My husband’s arms lock around me quick and tight. Even in his own grief, he understands the depth of mine. He will hold me 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 as we more to come as we remain a family. 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 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 our daughter, Sydney, was born with Down syndrome. The lyrics speak of the protective and nurturing nature of a maternal figure. I think she wants us to know she’s still here, loving us, mothering us. And I believe if we listen, if we just look over our shoulders, 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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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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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.

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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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