Tag Archives: motherhood

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.

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

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.

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Filed under Babies, Childbirth, Down syndrome, Family, Gratitude, Growing Up, Motherhood, Parenting, Special Needs

Just Breathe

Re-posted from March 6, 2014

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

Sylvia Plath

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

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

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 from under my bed 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.

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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.

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

Swallowed in Sorrow

In the hush of the hotel room I hear cars rushing by on the busy interstate. Above the hum of the fan, a far-off siren rises and recedes. It’s late. My teenage daughters make their cozy bed on the pullout in the other room. Their noisy whispers taper to silence then morph into the breathy sounds of sleep. Cocooned in the quiet, I listen to the rise and fall.

My husband and I detach for the moment, suspended between their sleep and ours. We recline on crisp white sheets, he with his phone, and me, my laptop. Time seems to stop, or perhaps I’m just willing it to. Shutting off his phone, my husband rolls over and reaches for the lamp. “Goodnight, honey,” he says. “Don’t stay up too late.”

In the dark, a glow emanates from my computer screen. I remove my reading glasses and rub my temples. I can’t give in. Not yet. Facing down the night, I try to stretch the hours until morning when my 31-year-old daughter will undergo a double mastectomy.

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Exquisite Grief

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

William Shakespeare, Romeo and Juliet

And now it’s happened: I’ve lost my mother. She laid down her broken body—soft and comforting still, but no longer up to the task of moving her through the days — and died. She laid down her weary head, the short-circuiting neurons in her brain finally quiet, and slept.

In her own bed, under her lovely floral quilt, she drifted away and left physical concerns behind in the vessel housing them. Her breathing stretched, the silence between each ragged inhalation hung with anticipation. Her pounding heart slowed and faded to a quiver, like the fluttering wings of a little bird, until it beat no more. My sister quoted Shakespeare: “To-morrow, and to-morrow, and to-morrow, creeps in this petty pace from day to day.” For Mom, the pace has ceased its forward motion; there are no more tomorrows. And in retrospect, the petty becomes hallowed. “Out, out brief candle! Life’s but a walking shadow . . .”

I knew it was coming, or rather, that she was going. For months, I mourned her absence even in her presence, trying to absorb everything and indelibly imprint her image on my memory. The days, finite and measured, poured like sand through the hourglass as I watched them go. I knew I would lose my mother, but I didn’t know it would bring me to my knees.

I didn’t know how heavy grief could be, that I’d drag myself under its weight from my bed each morning, pulled into motion only by the slipstream of routine. Even then, fatigue would leave me to endure the hours until I could curl up again, alone. I didn’t know the world would be too loud and too bright and too fast, its audacity for going on as if the cosmos hadn’t shifted unforgivable. I didn’t know I’d hide from my neighbors or seek solace nightly in wine or toss and turn restlessly in my sleep, dreaming of something just out of my grasp. I didn’t know it would feel like depression.

I didn’t know it would hit this hard, losing my 71-year-old mother to multiple sclerosis. I didn’t think I was entitled to the same bereavement as my friend who lost her 21-year-old son, full of potential, to a heroine overdose; or my friend, whose 5-year-old grandson was taken by a brain tumor before his life had even begun; or my sister, whose husband died of kidney cancer when he was 47, leaving a young son fatherless. Because Mom had been ill for decades and because I’d planned for the end of her life, because she’d become increasingly distraught and difficult, because she suffered, because she was at peace and ready, because I believe her death to be merely a transition—for all these reasons I thought my sorrow would be tempered. I know now, it matters not if the death is tragic or abrupt or expected, if the life has been long or interrupted; grief pierces and reverberates through all who have loved and lost.

I didn’t know it would lodge in my body, that I’d tamp down and swallow my emotions. That staying busy would be a coping mechanism. That avoiding reminders and seeking distractions would keep me functionally numb, but one handwritten note could unravel my hold. I didn’t know it would be a physical urge, this need to cry, and when unleashed, the intensity would crash over me in waves, plunging me under and washing me to shore only when the tide went out. I didn’t know I’d be a private mourner, that I’d get through the memorial with only a few tears, but in the dark of night, in my husband’s arms, I’d finally weep unabashedly, like a child.

I didn’t know people could show such tenderness, that when I returned home I’d find my friends had cleaned my house and left plants and flowers and cards and nourishing food. I didn’t know their generosity would humble me profoundly, that every thought and prayer, every gesture, every act of service would soften the pain and blur the edges.

I didn’t know I could miss my sisters so terribly, the airport goodbyes a severing. I didn’t know we would merge into the embodiment of the best of our mother, that separation would feel unnatural, impossible even. I knew the sacred experience of nurturing the exodus of our mother’s spirit from this world would bring us closer; I didn’t know escorting her body under a full moon to the teaching hospital where she would donate her brain for research would be just as holy.

I knew we’d draw comfort from each other, but I didn’t know heaving sobs punctuated by belly laughs could be so cathartic, that the somber ceremony of scattering her ashes at the ocean’s edge on a cold, overcast day could suddenly turn uproariously funny when one sister, attempting a dramatic toss into the wind, tripped and fell into the freezing surf. I didn’t know we would celebrate our mother’s magnificent life with champagne toasts, crying as we sang along to Helen Reddy and Anne Murray and Karen Carpenter.

I knew we were strong women, that working hard was inextricably woven into who she raised us to be. But, I didn’t know we could clean out her apartment in 3½ days, a whole life summarized in the boxes we carted to my sister’s garage. I didn’t know evidence of Mom’s bravery and integrity would manifest in the intimate task of settling her affairs; not only proof of her creative, tenacious resilience—the hallmark of her personality, but also, signs of her mental decline no one could see.

I knew she was loved by many, not only friends, but those to whom she bonded with fierce loyalty, her chosen family. I didn’t know I’d dread the task of calling each one to deliver the news, that the words would stick in my throat. I didn’t know that their lives would also be bereft without her and I’d be compelled to comfort them, even as my own heart was breaking.

I knew the daily texts would stop, that I wouldn’t hear her voice exclaiming, “Hi, honey!” on the other end of the phone, that when she came to visit it was the last time. I didn’t know when I logged into her account and shut off her electricity the sudden realization of its permanence would take my breath away. I didn’t know I’d question if I should have done more and agonize over whether I’d been enough. I didn’t know I’d ache for her forgiveness.

I knew she’d stay close, that we would feel her; I didn’t know she would come to me when I was exhausted and spent, in the dream-like trance of half-sleep, and spread comfort like warmth through my chest, or when I was quiet and contemplative, in a cool breeze, gently caressing my face and answering my question, “Is that you, Mom?”

I didn’t know the previous contentment with my pretty little life would now feel like complacency; that restless whispers would become clamoring discontent, catapulting me into change and insisting I choose a different path. I didn’t know this transformation was not hers alone; it was mine as well. I know now I’ll never be the same, but therein lies the gift: the pain that shattered my carefully crafted day-to-day, leaving me to ponder my purpose and revisit the very meaning of my existence, has allowed me to create the reality I was born to live.

I know now losing my mother hurts like hell; her absence incarnate is like a light gone out and it will be dark for a while. But in the darkness, I awaken. Holding hands with divinity, I glimpse that I, too am divine. My loss is not diminished by this blissful epiphany, and surprisingly, I’m glad. I don’t want its sharpness blunted. I welcome the overflowing experience, brutal one moment and glorious the next. I did not know, I could not know I would cherish my grief, a grief made exquisite because I loved her so. As I love her now. As I will forever more. This I always knew.

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Eulogy To My Mother

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

William Shakespeare

Wallow High School Senior Photo 1961

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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In Her Image

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

African-American Spiritual

Katie Lyman
Age 20, circa 1933

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

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

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

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

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

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

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

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

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

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

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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