Tag Archives: illness

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

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

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

In the Love Place

sunset clouds

And so lying underneath those stormy skies

She’d say, “oh, ohohohoh 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 and playing Angry Birds.  I had what we call the ‘Sunday blues;’ that restless dissatisfaction that strikes around 5:00 p.m. along with the realization that my vision of a weekend filled with relaxation and leisure . . .  well, it’s just not gonna materialize.  This happens frequently.  My days get filled with grocery shopping, running kids to activities, projects at home, work issues, and other mundane tasks and my fun gets relegated to Saturday night after the kids go to bed, but by then I’m so beat I pass out halfway through a movie.

I felt a coming shift in the weather foretold by a pounding headache that stormed my skull.  Sitting alone I looked out the window at the gathering clouds. Malaise settled in 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?) 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 had taken his last breath and given up the battle he’d waged to the finish.  He and my sister were separated, but 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 and tended to his dying.  In the process she found forgiveness and focused 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.

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