Category Archives: Parenting

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.”

Wilson’s Fitness BODYCOMBAT class
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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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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

A Good Enough Mother

The words are sharp, a staccato litany of frustrations ricocheting around the room. They’re mine, directed at my misbehaving teenager. Adrenaline shoots through my veins. Careful, I think, sucking in a breath, holding it. The silence echoes loudly. In my head, the diatribe continues.

Shhhh, a gentle voice says. Stop now.

My youngest stands in her pjs, ten feet away in the darkened kitchen. Backlit by the hall light, she’s small for fourteen, but contrition renders her smaller. The fire has gone out in her eyes.

“Go to bed,” I say in resignation. “Think about what I said.” I turn away, exhausted. Tirade over.

In the living room, my husband sits, a witness. Abruptly, I’m awash with self-loathing. I lower myself onto the couch and draw bare feet under me.

“She makes me so mad!”

He listens to my rumination of dance steps well rehearsed: I sacrifice, the kids exploit, I explode, they atone; forgiveness rounds out our choreography. Except for myself. I never quite forgive myself. Drained of my own fire, I see my daughter morph from provocateur to vulnerable teen; she’s done nothing her three siblings haven’t before.

“I need to go to her.” Unfolding my legs, I head across the house to her room. I find her sitting up in bed. She’s been crying, hard. Her nose is stopped up. She’s breathing through her mouth and discarded Kleenexes litter the blankets. Her suffering torments me, but recrimination keeps me rooted at the door. She’s earned her remorse, as I’ve earned mine.

“So,” I begin, but there are no words, just an unbreachable chasm. I hesitate and nearly retreat, when the same gentle voice says: She needs her mother. Unlocked, I take the few steps to her bed, draw the covers back, and climb in. She comes into my arms, lays her head on my chest, and erupts in fresh sobs.

I stroke her hair. My lips brush her temple. “I’m sorry, honey,” I whisper. “I love you.”

“I’m sorry, too,” she says, shoulders shaking. Choking, she sits up. Tears and snot mingle on her face. She swipes her nose across the sleeve of her T-shirt. Suddenly, she’s my precocious toddler, difficult even then, when I was no less flawed myself. A pang of longing rips through me. Did I love her enough? Was I a good enough mother? My mind jumps forward; she’s a young woman and I’m remembering this moment, wondering of my angst-ridden fourteen-year-old: Did I love her enough? Was I a good enough mother?

Time, fleeting, malleable, shifts backward, forward, and lands in the present. I hug my girl tighter, but still, I feel her slipping from my grasp. Motherhood is a wild ride careening this way and that without much to hold on to. Instinctually, we clutch at passing moments, only to find fistfuls of air. We berate ourselves for imperfection, withhold compassion, and crave a forgiveness we alone can grant. When she is grown, will it have been enough? I can’t know, but here and now, sharpened by pain, soothed by absolution, and bathed in benevolence, I could not love her more. And that might be enough.

Published on November 30, 2017: COMO Living Magazine

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Filed under ADHD, Adolescence, Aging, Babies, Family, Growing Up, Letting Go, Motherhood, Parenting

Eulogy To My Mother

When she shall die,
Take her and cut her out in little stars,
And she will make the face of heaven so fine
That all the world will be in love with night
And pay no worship to the garish sun.

William Shakespeare

Wallow High School Senior Photo 1961

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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In Her Image

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

African-American Spiritual

Katie Lyman
Age 20, circa 1933

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

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

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

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

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

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

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

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

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

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

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Confessions Of A Reluctant Stage Mom

“I’d like to go to brunch,” I say, loading my athletic shoes into my gym bag. A suitcase sits open on the floor. My husband carefully lays out his dry cleaning on the bed for yet another business trip. I circle him, gathering my notes and music for yet another class. Leaning out of our bedroom door, I holler across the house to the girls. “Leaving in five minutes! Get your stuff together.”

After I teach we’ve got to go straight to yet another of their activities. I turn back to Steven.

“You know,” I continue, toggling between conversations at rapid speed, “like other middle-aged couples do on Sundays. Spontaneously. By them-SELVES.”

Sydney, still in her PJs, walks around the corner.

“What are you doing? Get dressed!” I moan.

Exasperated, I give her a gentle shove in the direction of her clothing laid out in the living room. Over my shoulder, I whine, “You. Me. Mimosas. Is that too much to ask?”

We are not a middle-aged couple who brunch because those people’s children have grown and flown, and two of our four are still at home, dependent on us for food, shelter and filling out forms. Besides school and Mom and Dad’s “day” jobs, orchestra, choir and cheer practices, and visits to the doctor, dentist and orthodontist fill our jam-packed schedules. Making it work takes a savvy mix of Type-A organizational skills and go-with-the-flow flexibility. Even with a smartphone and Haley’s photographic memory, some things disappear from my radar. (Serves me right, I ‘spose — back in the days when I kept my calendar in my head, I tsk-tsked plenty at the moms who spaced appointments. Tip from my older, wiser self: Go ahead, judge, but it will bite you in the bum.)

Like many families, our baseline level of rush-and-go hovers consistently at “Hurry up, we’re late!” and “Do you have your violin?” and “Remember, I’m picking you up. Do NOT ride the bus!” Under duress, the barometer pushes into the red with “How can you not know where your poms are, you just HAD them?!” and “What did I do with my keys? I swear I just had them.” Mom’s taxi puts down a lot of miles with three to four trips out and back every day. The driving is one thing, but it’s the level of involvement that costs. If I can drop at the curb, energy output is minimal. That’s usually Haley. But, if I have to go in, engage and even TALK to people, the meter starts ticking. And that’s usually Sydney.

When she was born with Down syndrome, I had a vague notion of the extra support she’d need, but I couldn’t know just what it would demand. For her to succeed, especially in environments composed of her typically developing peers, she can’t go it alone: Mom gotsta go with. Birthday parties at Chuck E. Cheese’s and Going Bonkers? Playdates at friends’ homes? Picnics at the pool, festivals at the park and field trips to the zoo? After-school clubs and karaoke nights? I’ve been to all of them, a few particularly memorable highlights resulting in the blogs, “It’s About The Dance” and “Kids Can Save The World, or Lisa Goes To Science Camp.”

But, I am no heroic mother. Trust me, quite the contrary. On the nights that don’t end until 10 p.m. because after cheer practice, there’s still Sydney’s hair to curl for show choir dress rehearsal — dividing the heavy and wet sections and rolling them into sponge curlers while she cries — on those nights, I find it difficult to disguise the tired, impatient little man inside me. You know the one: Mr. Incredible’s boss, Gilbert Huph? “I’m not happy. NOT. HAPPY.”

It’s not that I resent it so much as I resist it; the pull of her special needs and what that requires of me. Plenty of times I’d rather be anywhere else than a high-school basketball game. But, not going is not an option. I won’t deprive her of the opportunities for fun and growth my other children have/had. Building relationships and making memories is what high school is all about. For that reason, I happily do what I must for my daughter, even when I’m decidedly not happy doing it.

Case in point: the show choir concert. Sydney’ high school performing-arts program has a reputation that doesn’t disappoint. Even the novice freshman choir takes its commitment seriously with clear expectations from the start. Tonight I have curled, styled and sprayed her hair into submission — an emotional ordeal for the both of us — and superglued French-tipped fingernails to her tiny nail beds. Lastly, I’m putting makeup, including foundation, eye shadow, eyeliner and mascara, on my daughter’s porcelain skin; my daughter who prefers natural beauty and balks at this intrusion. I hold the back of her head to line her lower eyelid and tell her for the 25th time to look UP, feeling my patience wane as she lifts her chin even higher, but keeps her eyes down.

“LOOK up. Your eyes, Syd!”

Sydney feels my impatience too, and her eyes well up.

I pull her close, blotting her tears quickly with a Kleenex, and tell her I’m sorry I’ve hurt her feelings, but she’s going to ruin her makeup!

“It’s OK, Mom. I’m fine,” she says, mustering her courage. I finish the job, getting us out the door and to call only a few minutes late.

While other moms find their seats, I’m backstage looking for the dressing room. Teeming with half-dressed girls leaning into mirrors, yelling across the room, laughing and talking and singing, it’s chaotic and adrenaline-charged. Sydney, sensitive to sensory input and a bit overwhelmed, follows me closely as we weave through bodies in search of her costume. I’m directed to a satin dress, covered in sparkling gems, with barely-there spaghetti straps, hanging in a plastic bag with her name on it. There are Spanx and tights and size 1 character shoes with a 2-inch heel, too. We retreat to a corner and I help slide her little toes into pantyhose and her little feet into the dance shoes. I zip up her dress and spin her around. Altered for her smaller frame, the dress fits perfectly. I clip the finishing touch–dangling rhinestone earrings–onto her ear lobes and step back. I’m blown away by this stunning, lovely young lady. She is talented and able, and no less so for needing my help putting on her undies and buckling her shoes.

Sydney can take it from here, so I give her a squeeze and go join my family, collapsing into the seat with relief just in time. The band strikes up the opening number and the freshman choir spills onto the stage, mounting the risers and belting out an upbeat number that instantly delights the audience. Energetic and vibrant, they move across the stage, in and out of clever formations, dancing and kicking and twirling. Fists pumping and hands clapping, it’s “Glee” in real life. And there in the middle, looking just like the other girls, if a miniature-sized version, is Sydney, grooving along and singing her heart out. She knows the words. She knows all moves. She knows no fear.

It comes to me in a rush, all at once, knocking the wind out of me: the realization of just how capable she is. She can DO this. She IS doing this! A sob rises in my throat and I stifle it with my palm. I look over at my husband who is already looking at me. Boundless pride pulses between us; shared in a way that is ours alone as her parents. In silent celebration, we clasp hands and I let my tears come.

The vocals swell and the big finish approaches. At the dramatic ending, in perfect timing, Sydney shoots her arm to the ceiling, jazz hand extended, and throws her head back. She and the rest of the choir hold the pose through the applause. Magic fills the auditorium. I’m flooded with gratitude for these sweet kids who have accepted Sydney as one of their own, for all the teachers and paras and adults who invest in her and continue to draw out her strengths, and for the man by my side, who resonates devotion; the powerful love that transcends any limitation, including busy-ness and weariness. He knows it’s worth whatever it takes to see Sydney, as normal as any other kid, following her dreams.

It’s even worth skipping brunch.

 

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

Enough

I actually did it. For once I followed through on a threat. I’ve battled my children for years — no, decades — over the condition of their bedrooms. When the eldest two were teens, I all but conceded the fight. Their dark, damp rooms devolved into giant petri dishes, emanating mysteriously mingled odors. Clothes covered the floor, and dishes littered every surface; drinking glasses half-full and film-covered, cereal bowls congealed with the remnants of sugary milk, plates smeared with dried-on leftovers. Trash and treasures alike were shoved into nooks or carelessly strewn about, unprotected, revealing a laissez-faire attitude toward expensive teenaged paraphernalia: Game Boys, skateboards, headphones, stacks of loose CDs. The horrific messes frustrated me, but my kids taking everything for granted, that disheartened me. The situation resolved — when they moved out.

I can’t wait that long with the second batch. I’m old and basically one apoplectic fit away from a heart attack. I vowed things would be different and set out with two basic tactics: 1) Stay on top of it; get organized and maintain order, and 2) Teach them to be respectful; expect responsibility and reward compliance.

Mmm-hmm. Yeah.

I organized the play room with color-coded tubs on corresponding shelves. I arranged drawers, cabinets and cubbies. I used LABELS. “A place for everything and everything in its place,” I intoned, and for whole hours at a time their rooms looked like a Pottery Barn catalog — such a sweet sensation! But there was no way I could keep up the relentless policing and cajoling and reinforcing. Even with control issues, I was no match for the destructive force of my children. When I let down, even a little, it all went to hell in a hand basket; the little monsters annihilated my beautifully orchestrated design. Their energy was tornadic — toys, games, books and dolls were flung everywhere. And all those tiny pieces — broken crayons, Barbie shoes, key chains, pennies, paper clips, empty wrappers from Halloween candy and crunched-up chips smuggled in and hidden under the bed. The wreckage sent me into my own tailspin.

 

Prolonging the inevitable, I’d shut the door and walk away. I did not want to see it. Eventually I’d muster the strength and supervise the restoration of order by the demolition crew themselves. And by “supervise” I mean losing patience with their lackluster, apathetic efforts and cleaning it all up myself as they stood by, repentant and cowed into silence by my ranting.

“Look at all this stuff! It’s too much. Seriously, if you girls cannot change, you are destined to become hoarders. You’ll live alone!”

This cycle has repeated itself ten-thousand times, but the last time was different. I was different. I had enough.

“That’s IT. I am DONE! I’m NEVER doing this again. The next time you leave your things all over your room, they will BE. GONE. I MEAN it. I’ll come in here with GARBAGE bags!”

They didn’t believe me, but it was no idle threat; I followed through. Well, Steven did. My husband seemed to think I’d back-pedal, so he waited until I was at work to do the deed.  I came home to 12 heavy-duty black bags sitting in the garage where I park my car. And an empty play room. Epic in scale, their messes flat wore me out, but it was what those messes said about my kids that truly bothered me. It said they don’t appreciate what they have, that they are used to getting what they want; they’ve certainly gotten anything they’ve ever needed. And they don’t value it or the hard work and money it took to purchase their luxuries. As a parent, it’s a hard truth to face: having more than enough has not made them grateful, it’s made them greedy. And I’m to blame.

When we were in high school, my brother, sister and I lived with our single mother in a double-wide trailer. Parked on farmland in southeastern Idaho, we hunkered down for subzero winters and dug ourselves out of snow that began in October and stayed until April. To fight off the brutal cold, we fed a wood stove throughout the night and burrowed into heated waterbeds. My brother and I drove our one car to school after we dropped off our mom at work. Our clothes came from K-Mart, our furniture from thrift stores and when we worked potato harvest, our wages went to the household rather than in our pockets. I got good at pretending I wasn’t hungry on Friday nights at McDonald’s with my friends.

When I became a mother, I wanted my children to have what I didn’t, but in filling that void, maybe I denied them the opportunity to develop something I did have, in spades: a work ethic and sense of responsibility, an appreciation for material things and what it takes to earn them. Gratitude. Perspective. In hindsight, while they were tough, those experiences made me who I am today.

At Christmas, especially, when the anticipation of presents dominate my young daughters’ thoughts, when the reason for the season is buried under retail consumerism and drowned out by advertisements of aisles and aisles of bright, shiny treats, I grapple with how to adjust their attitudes. I long for them to recognize their bounty and share it freely with those in need. At heart, they’re not selfish. Sydney is so sensitive to other people’s feelings and generous. She has literally tried to give people the shirt off her back — or the iPod in her hand. And Haley, who has a special love for little ones, latches on to anything about sick kids. She filled out a donation slip for St. Jude Children’s Hospital and tucked $15 of her own money inside, asking me to mail it for her. My girls are kind and compassionate; they just need a chance to express it. And I need to lead the way.

Where to start? The world is full of hunger and pain and loss — the need so great. What could we do that would make a difference? The answer is simple: Whatever you can give, give. Whatever you can do, do. Mother Teresa said, “If you can’t feed a hundred people, then feed just one.”

In Columbia, you don’t have to look far to find ways to give. Organizations such as The Food Bank for Central and Northeast Missouri, Rainbow House, Coyote HillTrue North and Harvest House are among many worthy causes working tirelessly to serve humanity. Technology makes it possible to impact lives globally as well as locally. One mom I know coordinates an annual packing party for Operation Christmas Child, sponsored by Samaritan’s Purse, an international relief organization. This year, I took the girls. On a Friday night, we gathered to fill shoeboxes with school supplies and hygiene items, socks and hats and flashlights. And toys, of course: dolls, trucks and stuffed animals; things that will surely become prized possessions rather than yet another plaything to be taken for granted. Packing the boxes full, Sydney and Haley topped them off with handwritten letters and their school pictures to add a personal touch and sent them winging their way around the world to be received by children who might not have access to clean water or health care, let alone presents on Christmas Day.

By giving their hearts, my girls realized it’s not about the stuff, and in fact, excessive stuff gets in the way. Material things are not what bring us happiness. Connection, service, love: These are the gifts I want to give my daughters, and the knowledge that they can make a difference themselves, right here at home and across the universe.

So far, it’s sticking. Greed is giving way to benevolence. We’ll keep it up, finding opportunities to reach out. It is far better to give than receive, and they know that now.

The bags containing evidence of their overabundance sat in the garage for a few weeks, giving them plenty of time to think and allowing them to discern what they cherish, what they appreciate and what they can let go of. And in the process, they learned how good it feels to have, not too much, but enough.

 
 

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Becoming

I love teenagers. I do. Everything about them: the awkward, the self-conscious, even the angry bits. I’m especially intrigued by the way they shed their childhood like a skin and emerge a newer, older version of themselves. I even kind of love parenting teenagers. I know–it sounds nuts, but I feel I hit my stride as a mom when my kids hit double digits.

My babies slathered me with sloppy, open-mouthed kisses and clung to me like monkeys with their dimpled fingers; their miniature selves extensions of my body, not quite separate. Pressing them, sweet smelling and downy to my chest, was intoxicating. It comforted me as much as them. But there was the sleep-deprivation and the crying and the poop. So much poop. Not my fave.

My toddlers left sticky handprints on the walls, dropping crumbs in their wake and careening clumsily through our days, insisting loudly, “No, I do it!” Mini-tyrants, they asserted their independence and in conquering their world, dominated mine. Adorable to grandmotherly types who no longer dealt with blow out tantrums and whole gallons of spilt milk. Pass.

My preschoolers asked thousands of questions starting with “Why . . . ?” Insatiably curious, they chased sensory input with the sole purpose of soaking up knowledge . . . and destroying my house. Their constant motion and boundless energy siphoned me dry. Plus, the requisite mommy activities filled me with dread: crafting was code for a special sort of hell surrounded by Elmer’s glue, paper plates, and a million tiny beads. Not my best skill set.

In elementary school, baby-fat gave way to long legs as my kids morphed into capable young people with new skills and talents. They lived large and played hard and the noise threshold hovered around ear shattering, leaving me slightly deaf and functionally catatonic. No thanks.

By pre-pubescence, mysterious internal stirrings accompanied outward signs of impending change. On the cusp of a developmental leap, my children remained child-ish, but their sense of savvy and street smarts emerged. Thinking for themselves and testing limits, their personalities started taking shape and I enjoyed their unique brand of humor and conversation. All in all, a delightful stage, except for the hygiene: showers, toothpaste and clean underwear — not even on their radar. Getting closer.

With full-on adolescence, things got much more complicated; the physical work of parenting shifted dramatically to mental stress and strain. I expected the hormonal mood swings, the acne, the shocking growth spurts and voice changes, but I did not foresee that while their bodies mimicked adulthood and their psyches masked a false bravado, their brains — and hearts — remained immature and thus vulnerable. They were babies in grownup bodies, but I loved being with them. My goal was to keep them talking. I believed that communication was key to navigating the rough waters of parent-teen relationships and in my book, we succeeded. They felt safe enough to come to me with anything. Well, ‘aaaal-most anything.’ This according to my husband.

Don’t get me wrong, it was no nirvana, and I will state for the record, sometimes it was God-awful. I was certain we’d be swept under by those rapids, but we made it. And over the years, the intensity has faded — ironically, not unlike labor pains — and what lingers are gratifying memories of my older children becoming the smart, funny, compassionate and talented individuals they are today. With the age difference in our kids, it’s two down, two to go.

Now Sydney, 15, the older of the second batch, traverses the current. At schedule pick-up walking the halls of the high school, crowded with teenagers a full head taller than my petite daughter, I follow behind, watching her stride confidently down the corridor. I feel an acute sense of poignancy so sharp it’s almost painful: my girl, who happens to have Down syndrome, is a freshman.

While it’s true that many people with intellectual disabilities will retain child-like qualities, they do mature mentally, physically and emotionally. Sydney initially resisted the changes to her body. “I don’t want to become a woman!” she cried. But with the onset of her cycle, she’s embracing her new place among the women in our family and wants to share the news. With her trademark lack of self-consciousness and social decorum, she makes random comments — in public, no less. “I’m wearing a new bra!” and “Me and Mom are growing boobs. We’re boob twins.”

Sydney is intuitively aware of her disability and how she fits into social manueverings. As a cheerleader, she has an opportunity to ‘belong,’ but her success depends on me going to practice with her. I learn the routines and then teach them to her; practicing over and over and over. I’ve not always been cheer-ful about doing it. More than once I thought it was too much, for both of us. However, I also know she’s competent — she can do it, I’ve seen her! Despite the sighing and the tears, it’s worth it to see her achieve, on her own merit. Besides, she looks darling in her uniform.

Raising kids requires discernment about when to protect and when to prod, when to hold back and when to let go. With special needs kids, it’s easy to err on the side of caution and unintentionally block their progress. Sometimes we just need to get out of the way.

Like hatchling chicks, adolescents gain strength by breaking through their shells, earning a resilience they’ll need to live on their own. In many ways Sydney is a normal 15-year-old who loves YouTube and shopping and Taylor Swift and pizza parties. A teenager who rolls her eyes and says, “Mom, you’re ‘bare-assing me!” Who wants a phone and her own room. And a boy friend.

Being a mom to teenagers is the ultimate exercise in frustration, but I kinda love it. Sydney has begun the trek to independence and her sister, our last, is not far behind.

A few nights ago, Haley, age 11, came out of her room sobbing, during the scarce quiet time between the girls’ bedtime and our own. From my seat on the couch I watched her make a beeline to my husband, Steven, who stood in the kitchen. She wrapped her arms around his waist and buried her face in his belly.

“What’s the matter, love?” Daddy asked. “Did you have a bad dream?”

She cried and mumbled something incoherently.

“Sweetie, I can’t understand you,” he said, bending over and untangling her from his torso.

Pulling her head back and wiping her nose on his shirt, she took a deep breath and wailed, “I’m crying but I don’t … know … why!” and collapsed into fresh sobs.

He rubbed her back sympathetically, but looked to me helplessly, raising his eyebrows and shrugging his shoulders as if to say, “Um, what do I do with this?”

“Come here,” I said soothingly and stretched my arm out. She settled into my lap, curling into my body as I stroked her hair. “Chickadee, I know exactly how you feel.”

Some things, we don’t grow out of.

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Filed under Adolescence, Aging, Babies, Down syndrome, Family, Gratitude, Growing Up, Memories, Motherhood, Parenting, Special Needs