The Way Home

Image by Gerd Altmann from Pixabay

I went to church this morning—on my couch. A dutiful daughter, I spent the first half of my life in religious prostration, and then I left. But detachment from dogma meant disconnect from community and I wandered, people-less into my middle-age. In recent years, I sometimes sat, shyly, noncommittally, on the back row of a new church I discovered, an un-church. The Unitarian Universalists. 

The UU church, nurturing spirit and service, brings a solace of words and music and familiar faces to my living room via Zoom on this second Sunday of social distancing. Congregants come like moths to the chalice flame. Greetings scroll up from the chat box as joiners bask in the warmth of shared hearts and minds, if not bodies.

Sensitive to surrounding energy, I’m challenged at the best of times to recognize what is mine and what is not. I get that from my mother, I suppose, an empath who could not witness a child harshly disciplined in the grocery store without weeping. My body picks up stray vibrations like a musical instrument and amplifies emotions I cannot name. In this time of global crisis, the volume is deafening. 

Reverend Molly reads poetry. The words are gentle hands untying the knots that bind my chest, loosening the resolve I wear as armor. Awareness of my unawareness blooms; I’ve been holding my breath and I didn’t even know it. With room to expand, distress spirals up toward the open air and I am crying. Copious tears trace their way slowly over my cheekbones and drip off my jaw.

I cannot stop, but even if I could, I would not. This grief is my prayer. 

On day 8 our family has cut our losses, nursed our disappointments, regrouped, and hunkered down for the duration. Cancellations and interrupted routines require precarious adjustment. Intimately, we hover protectively over our own. Sydney, 20, with Down syndrome, who suffered a near fatal pneumonia when she was 2 is particularly at risk. Melissa, 35, is 3 years out from breast cancer, including the full-on assault of chemo. I worry that her immune system is not fully recovered. And Jeremy, 33, is a physician’s assistant, on the front lines, testing and treating by day, returning home to his wife and 3 babies at night. I wonder if his PPE will last and if it can protect him from harm. 

Our fears are mitigated by gratitude for good fortune and blessings abundant: the opportunity to work from home, continued income, food, and shelter, and togetherness. All shall be well for us. What I feel today is bigger than myself.

The overwhelming scope of collective human experience rises in my throat like a coyote’s mournful cry in the night.

I have become those who are ill and those whose very lives are forfeit. I am their loved ones who rail at the injustice of their loss. I am those whose businesses are failing, finances lost, futures uncertain. I am everyone who is alone and afraid. Boundaries and borders blur. I am more than the inhabitant of this one small life. I am everyone.

How can it be true that this intensity is not mine? I think perhaps it belongs to me more than ever.

For in it, I sense a seismic shift; the world will simply not be the same on the other side of this. And what hangs in the balance, could this be the answer we’ve been praying for? Might it be the transcendence we’ve searched for? The salvation of humankind? 

There’s meaning here, an invitation. As the centrifugal force pinning us to our lives suddenly stops, radical change isn’t only possible, it is inevitable. It feels like a reckoning, a nudge as we lurch and tilt toward a tipping point, hanging on by our fingernails, poised to cascade over the edge into a cavernous unknown. But in freefall, we grasp and clutch with fear only to find it is in the letting go that we are safe. And finally, fully alive.

Spirit of hope, help me.
I can’t seem to find my way back to your realm.
I’ve been wandering in labyrinths, running into dead ends,
facing down monsters, losing my way.
Ariadne’s thread only tangles my feet and leaves my fingers raw.

Spirit of hope, ground me.
I’ve lost my bearings on what’s real, who I am, how I got here, why it matters.
Unreality makes a poor compass.
I remember to look up lest I get caught off guard,
but such preparations mean little to a soul suffering vertigo.

Spirit of hope, steady me.
Maybe the only way forward is to stay still.
Perhaps if I rest my bones exactly where I am instead of
scrabbling for purchase, searching for loopholes, willing myself on,
perhaps the dust will settle enough for a path to reappear,
a path that needn’t be tended or beautiful, just barely discernible.

Spirit of hope, guide me.
You dwell in the turn around between inhale and exhale,
a moment of trust that pulls me into the future.
I’ve been looking for something more grand, more obvious,
more compelling.
Help me recognize the promise and the flickering signs of life,
of love, of hope.
Help me remember that my body already knows the way home.

Lindasusan Ulrich

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Filed under Breast Cancer, Down syndrome, Family, Gratitude, Grief, Loss, Motherhood, Pandemic, Stress

Cancer in a COVID World

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

Mary Oliver, The Veil

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

Dad emailed on Monday. ​

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

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

Until pancreatic cancer.

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

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


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

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

She was still there.

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

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

I jumped up, seeing it was Barbara.

“You’re not leaving, are you?”

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

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

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

Time was up.

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

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

“Can you hear me?”

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

“I can’t see anybody.”

“Can you see me?”

“I can see you!”

“Who said that?”

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

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

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

But here it was.

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

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

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

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

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

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

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

“Oh, nooooo,” she cooed peacefully.

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

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

Then we got down to the hard stuff. 

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

“I can’t believe it,“ he said. 

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

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

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

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

The pandemic has stripped me clean. 

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

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

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

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

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

View From A Quarantine

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

Leonard Cohen

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

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

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

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

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

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

And then, the pandemic stopped life in its tracks. 

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

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

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

At least within the sphere of my reach. 

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

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

The village is intact.

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

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

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

But not every day. 

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

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

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

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

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

Especially when they are alone.

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

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

“Always be kind.”

“And always, always be kind to yourself.” 

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

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

Resurgence of Hope

You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
and the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting
over and over announcing your place
in the family of things.

Mary Oliver, Wild Geese

I read once that Canadian geese are monogamous, that most couples stay together all their lives. Considering the brutality of life in this wild world, I find that to be an inspiring example of devotion, applicable to the human condition, particularly in our postmodern reality.  

My husband and I have, on day 13 of the COVID-19 quarantine, brought our two goslings out to the country for a change of scenery. This is our fourth spring out at the farm. Well, that’s what we call it. Although we raise no livestock nor harvest any crops, my husband and I christened the 22 acres we bought in the rolling countryside of Steedman, Missouri “the farm.” 

It was Steven’s idea, owning property, a dream of his for years. I’m not sure what shifted from casually keeping an eye out for good deals to hunting in earnest for a prize parcel. Maybe the fact our youngest would be heading to high school or the approach of his 50th birthday, but his vision became a quest. 

Property moved quickly and several times choice lots were sold before he could make his move, so I wasn’t surprised when he called me one Sunday from an open house.

“I think this is it, but I have to make an offer now.”

“I trust you,” I said, and meant it.

Still, a purchase that large, sight unseen left me a bit unsettled. It was his dream, I reassured myself; it didn’t matter much what I thought. I knew my husband worried about pleasing me, so I was determined to reserve judgment. We wound around a rural two-lane highway for miles before turning off the asphalt onto a gravel county road. We passed the stares of grazing cattle and a herd of goats that ran for the fence. After a mile or so, Steven rounded a corner and drove up the hill to park the truck in front of a green metal house and carport which sat overlooking a grassy meadow. The view showcased an open field sloping down to a small pond flanked by walnuts and maples and oaks. Spreading out from the clearing, thickets of woods covered the swells and ravines of the terrain. In the heart of winter, the trees were bare and the forest floor, a bed of leaves. I’d adjusted my expectations, but I could not have possibly known it would feel like coming home.

That first spring, the place greened up like Jumanji as Missouri is wont to do when a sunny day follows drenching March rains. Weekends found us driving out to work on the cabin, making it livable with paint and flooring and furniture. We slept with the windows open, the cool breeze carrying in nocturnal sounds of the wildlife that seemed unperturbed by our presence. 

A pair of geese made their home near the pond, and judging by their protective behavior, closely guarded their future family. One night we were awoken by horrible, guttural shrieks. The primal quality of the squalor struck my heart before my mind was able to identify its origins. I heard ferocious terror, the sound of survival in the endlessly shrill honking. Come morning our fears turned prophetic. A predator had invaded the nest and our geese were gone. We were left wondering if the parents had been injured or even killed in the attack, but we knew for certain, there would be no babies. 

The second year Steven built a nesting box out in the pond, safe and elevated away from prowling raccoons and foxes and skunks and out of reach of foraging turtles and snakes and muskrats. But the geese missed our offer of a safe haven and rebuilt their nest in the same long grasses on the bank of the pond. That year, our anxious anticipation of babies was suspended by the sudden absence of the parents and abandoned, broken eggshells.  

Last year, we watched, hopeful the couple would discover the stilted rubber tub, but it remained empty. Neither did they return to the pond. No geese, no eggs, no tragedy. But my disappointment felt like loss. Sadness filled the void where their presence had been the two years before.

This year, busy travel schedules, illness, and weather have kept us away. Additionally, amidst global crisis, we’ve submitted to the confinement that saw our 25th wedding anniversary come and go, any plans postponed indefinitely. But in truth, the lack of overt gestures and social pronouncements pales compared to the surprising gift of this pandemic: time together.

We’ve come out to the farm with our brood to hunker down, but also to expand into our wide open spaces. We play games and solve puzzles and cook food and watch movies. We have conversations and we take walks.

As Steven and I set off this morning, he stops me short. 

“Shhhh, look!” he says, pointing down the hill to the lull of meadow between road and pond.

I squint, shielding my eyes as I make out the silhouettes of two geese. The male stands guard, stock still. In profile, his head is raised, his long neck extended. He is a sentry. The female bends over, feeding in the grass. I bring binoculars to my eyes, adjusting the dial until the image swims into focus. Two fluffy balls hop near the mother’s feet. Goslings. 

“We’ve got babies!” I say excitedly to Steven, handing him the binoculars. “They’ve got to be the same geese, right?”

Lest we doubt these geese are ‘ours’ and mistake the sight for a mere coincidence, the father, sensing our watch, suddenly ushers his little family toward the safety of home. Mama noses the little ones along, scooping them up from behind with her bill as they bob and trot fuzzily through the grass. Daddy brings up the rear and disappears into the marsh at precisely the same place as the years before, where previously the nest lay empty.  

Tears well in my eyes, a daily occurrence it seems lately. I experience a cocktail of emotions: the resurgence of hope after loss, a resilience borne of grief, holding steadfast in the face of uncertainty. The dignity of the natural world teaches me a simple lesson: Life will go on. My mate and I will follow our instinctual path. We will protect and provide for our family.

We’ll be all right, I think as I take my husband’s hand and walk down the road into the morning sun. 

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Filed under Babies, Family, Gratitude, Grief, Loss, Marriage, Motherhood, Pandemic

Rockin’ The Socks for World Down Syndrome Day

Repost from March 21, 2016

The sun goes down
The stars come out
And all that counts
Is here and now
My universe
Will never be the same
I’m glad you came

Steve Mac, The Wanted

My sock drawer is stuffed to overflowing: Everyday athletic socks, fuzzy slipper socks, a few dressy pair of trouser socks. But my special collection consists of crazy, colorful knee socks and on March 21st I’ll have plenty to choose from in honor of World Down Syndrome Day.

Trisomy 21 is the technical term for Down Syndrome. Chromosomes made up of DNA exist in every human cell, typically 46 chromosomes or 23 sets of two. In the case of DS, an abnormality occurs, resulting in an extra chromosome, 47 in all. The extra, third chromosome is on 21st set. 3-21. Hence, March 21st was officially declared the day the world would recognize these extraordinary individuals.

From Australia to Zambia, the unique talents and abilities of people with Down Syndrome are celebrated. The invitation is extended all around the globe to rally behind the #lotsofsocks campaign. To get people talking and asking questions, the organizers of WDSD recommend wearing, “not just any socks, but brightly colored socks, mismatched socks, long socks, printed socks, one sock. Maybe even three socks, one for each chromosome.”

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Just Breathe

Re-posted from March 6, 2014

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

Sylvia Plath

There’s a stillness that descends on the hospital late at night, softening the harshness of bright lights and the sterility of hard floors. Sounds are muted and voices are hushed. Sydney is the only patient in the sleep lab tonight located at the end of a long, empty corridor. It’s dark in her room but for a night light and the glowing dots of the medical devices she’s hooked up to. I shift uncomfortably in the reclining chair next to her bed and wonder how I’ll make it until morning. It occurs to me that my father-in-law spent more nights this way than I can count during the fourteen months of my mother-in-law’s battle with cancer. It also occurs to me that the last time I sat in the dark next to a hospital bed was with him, the night before she died.

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

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

Sydney at seven

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

{Inhale}

{Exhale}

{Inhale}

{Exhale}

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

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

To Be Loved: The Greatest Gift

When I was young, I married my best friend, a cliché dismissed as sentimental until it happens to you. In my husband, I found my home. Now, ensconced in midlife and traversing the terrain of family life, inherent with its joys and sorrows, I’m filled with deepening gratitude for his presence and a love that grows stronger — and simpler — with time.

A scene from the movie “Valentine’s Day” illustrates the enigma of mature love. Shirley McClaine says passionately to her husband of 50 years, Hector Elizondo, after a devastating rift: “I know I let you down. And maybe you don’t think I deserve your forgiveness, but you’re going to give it to me anyway. Because when you love someone, you love all of them — that’s the job. The things that you find lovable and the things that you don’t find lovable.” He quiets her pleading and whispers: “Shhhh. I understand. I’ll never leave you.”

This truth struck a chord. The springtime of love, while authentic, is not sustainable, and when the veneer wears off, we’re left naked and exposed. Love the compulsive idiosyncrasies, the annoying habits, the abrasive characteristics? The graying hair and sagging skin, the morning breath, bed head, and restless legs, the flatulence and cellulite and soft bellies? Love these things, too? Yes. Especially these.

Deserving or not, I know my husband loves me. And it’s not his abundant declarations that tell me so; it’s the gifts. From the start, Steven showered me with gourmet dinners, roses, lingerie, a gorgeous engagement ring, and a perfect proposal. He decorated the house with hundreds of hand-cut paper hearts. He wrote poetry. He saved me the Biscoff cookies from his flights. He also paid off my student loan, supported my mother financially, and raised my young children as his own. Consummately generous, it’s his nature to give. Of his time, his efforts, his resources.

For nearly 25 years, he’s lived his love with daily gifts, making coffee in the morning, brushing the small of my back as he walks past, letting me sleep in on Sundays, surprising me with my favorite wine. He replaces my brakes, manages the taxes, and does the laundry. He senses my moods and makes me laugh. He feeds me.

Yet, of all his gifts, the most profoundly affirming is his desire for my happiness; he acknowledges my dreams and helps me to realize them. No strings attached.

This year we spent Christmas at our little cabin in the woods. Out the front window is a pastoral view of the meadow sloping downhill to a pond. At the water’s edge sits a gazebo Steven constructed for me to write in. I unwrap a homemade gift certificate entitled “Writer’s Retreat” and glance from his eyes to the window then back to a photo of the gazebo. Beneath it is printed, “You seldom have the opportunity to enjoy time for you, for writing, for breathing, and I want to help facilitate that. Please take a weekend for yourself, at the farm. Leave on a Friday, come back on Sunday. I’ll take care of the kids. I’ll plan your food, buy your groceries, and pack your car to send you on your way. Merry Christmas, honey. I love you.”

Through tears I look to my beloved’s face where the map of our lives is written. With this gift, my best friend speaks a love language that says, “I know you.” And to be loved like that — it’s the greatest gift of all.

Published March 28, 2019 in COMO Living Magazine

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Filed under Aging, Christmas, Marriage, Motherhood

Love in the Stitches

The older I get, the more I’m drawn homeward. When the weather turns cold, my craving for soup on the stove, a fire in the hearth, and time to knit begs to be slaked. Chilly temps find me cruising arts and crafts stores, feasting on colors and textures of yarn, imagining new projects. Winter sends me digging for my stash.

On hands and knees with the bedspread flipped up, driven by this seasonal hunger, I drag out baskets and totes of knitting supplies, including fifty years of my mother’s accumulation I inherited after she died. Unlike my messy stockpile, hers is meticulously organized: stitch holders, markers, and gauge rulers, and dozens of pairs of needles—aluminum, plastic, wooden, double point, circular—all collated by size and labeled. Dog-eared pattern books date back to the 1950s. Her handwriting marks their pages. Expensive skeins of alpaca wool, unused, leave me to wonder at her plans.

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

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

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

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

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

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

Published November 29, 2018 in COMO Living Magazine

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

Depth of Field

It’s a gorgeous spring day on our 22 acres outside Fulton, a brocade of rolling green set against a periwinkle sky. It’s where I come to breathe. Today all four kids, their families, plus my dad and sister visiting from out of state are here to celebrate. Four generations together, a rare treat. I’m relishing every idyllic minute. The afternoon, spent fishing, exploring, hiking, and picnicking, is nearly over before I remember the photo.

“Hey, you guys!” I say, calling everyone in. “Let’s get a picture under the big tree.”

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

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

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

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

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

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

Published July 26, 2018: COMO Living Magazine, Seasons

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

Coming Home

Ethan and Sydney at the magic moment

The night is a pleasant 68 degrees, but heat emanates from the bright stadium lights, and I’m damp beneath my Rock Bridge High School T-shirt. My boots clink on the aluminum steps as I climb past the student section and up the bleachers. A few people in the stands wave and others call out “Good luck!” I slide into the seat my husband, Steven saved for me while I helped our daughter, Sydney, execute the night’s events. ​​

“She’s ready,” I say, glancing at the scoreboard. A minute thirty left in the half. Steven pats my leg.

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

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

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

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

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

Jordan, Sydney, and Ethan

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

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

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

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

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

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

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

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

I love you, too. You are fabulous. 😘️

Thanks mom I love you more than cheese 🧀

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

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

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

“Sydney Kent!”

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

RBHS Varsity Cheer Squad 2017-2018

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

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

Published March, 28 2018 in COMO Living Magazine

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