Category Archives: Gratitude

Not So Long Ago and Not So Far Away

Binge watching TV, a pastime for which I previously had little time, and a guilty pleasure I’m loathe to acknowledge, has opened a portal for me during the pandemic, a passageway to another world. Once Upon a Time has been my alternate realm (except for the period I resided within the universe of Schitt’s Creek—almost completely comprised of two adjoining motel rooms–where I voraciously gobbled up all six seasons, the final episode leaving me a sobbing mess in disbelief that it ever was allowed to end).

Steve, Grampy, and me–1967

Contemplative by nature, the isolation of this COVID year has forced constant and not always welcome introspection. Magnetically drawn to the tales of Storybooke, the fictional town inhabited by intersecting celebrities of the make-believe power set (and not just characters from the Brothers Grimm, mind you, but also those of C.S. Lewis, L. Frank Baum, and the numerous Disney creators of Mulan, Jasmine, and Anna and Elsa), I’ve been intrigued by my own intrigue. I have always loved stories, but why such attraction to these fairy tales and their creative twists? Magic, true love, mystical powers, light in the dark, good versus evil, the epic tales contain the stuff of classic yarns. A harmless escape into fantasy, I decided it was. A much needed exit from the chaos of this reality into the multiverse of the Enchanted Forest. A rising hero, a vanquished villain, a happy ending, the clear cinematic themes provided structure. Closure. There’s something satisfying in watching the formulaic saga repeat itself: Innocents, the undeserving victims of circumstance are trapped under a curse cast by a malevolent force seeking to retain brutal control by exerting their powers. Dire straits intensify until certain doom awaits and all hope is lost. Or is it? Because in that precise moment the miracles occur, triumph at the last moment by an unforeseeable savior. A potion, a spell, a token. True love’s kiss. No matter how dark, light always prevails. Love wins the day.

There’s something satisfying in the formulaic saga.

I thought perhaps I’ve been charmed by the childish simplicity. Real life isn’t so black and white. Upon a closer look, however, I saw that neither is life in that pretend place. When peeling back the layers of vile atrocity, no matter how black the heart, no scoundrel began their sojourn as such. Pain, abandonment, betrayal–​these drive the bad guy’s blood lust for revenge and destruction. Moral devastation amplifies their rage aimed at those who have what is desired but remains out of reach. ​​And even the good guys sometimes succumb to hopelessness or jealousy. They, too, can lose their way, pouring gasoline on the fire in their fight for justice, learning that the end cannot justify the means. I think even children can tease out the truths embedded in these stories. Especially children.

Mom, J.W., Gwen–1948

Maybe my deep dive into the fairytale world isn’t just escapism. Maybe it’s a way for me to process what I’m seeing around me: the age-old struggle of humankind for equity, collectively caught in a violent tug-of-war, “others,” perceived as enemies, dominated and killed. The battle for the soul of humanity is still happening today. For all the advances of technology, in the Information Age, we’re not much different than in the Dark Ages, when kings hoarded wealth and peasants starved. When the elite few sustained their power by climbing on the backs of the working masses. 

Even children can tease out the truths in these stories.

I feel in my bones, though, the longing to evolve, to purge ourselves of ugliness and petty, selfish greed, to emerge outside the rigidity of our own thinking into a collaborative, peaceful co-existence. But how do we get from here to there? I suppose the answer lies within each heart and mind. In every choice. As we co-create the world around us, moment by moment, this synergy of choice operates on free will. And like the characters in Storybrooke, we all possess both lightness and darkness. At any given intersection, the possibility exists to take a different fork in the road.

Even then, happy endings aren’t static. They don’t last forever–that was never the point. As perfect as they might feel, our happily-ever-afters burn bright only for a season. Life is transient. For better or worse. In sickness and in health. The afterlife notwithstanding, the physical limitations of our kingdom on earth offer the inevitable exchange of heartache for the gift of having loved in real time. For every summer, there is a winter. The leaves turn. The snow falls and signals the chapter’s end. And life waits patiently, dormantly, until it renews itself in spring and a new chapter begins.   

Our happily-ever-afters burn bright only for a season.

My Auntie Gwen reached the apex of her winter last week and arrived at the end of her story. She was ready, she told me, at peace. “I’m so looking forward to seeing my mom,” she said. ”And Jesus.”

Grampy, Dee, Grammy, Mom, Steve, me, Gwen, Heidi–1973

Aunt Gwen is the third of four siblings now gone. My mother, Pat, died five years ago, and their older brother, J.W., back in 1948 when he was only 10. My Grammy and Grampy, Katie and John, died in 1998 and 1990 respectively. Only Auntie Dee remains earthbound. For now. The family history is written in letters and journals and essays. It’s preserved in my DNA. It lives in my memories, passed down from generation to generation in oral traditions like the one that begins, “Once upon a time, not so long ago and not so far away, there lived a Little Old Man and a Little Old Woman and their Little Dog Turpy in a Little Old House by the field where the hemp stalks grew.” I clutch at a past that’s slipping away to die with those who lived it. Perhaps this is why I am compelled to take up the pen and tell their stories.

Gwen and me–1967

Katherine Gwen Lyman was born in Bozeman, Montana on May 14, 1946 and grew up in Wallowa, Oregon. After earning a Bachelor’s degree in Social Welfare and a Master’s in Special Education and School Counseling, she spent her career as a beloved teacher of students with disabilities. An avid vegetarian and lover of birds and wildlife and flowers, she was never without a feline companion. Auntie Gwen was my first musical influence, pulling me into her lap to sing as she played the piano. I watched her fingers trill on her delicate flute, amazed and enthralled at the beauty of her embouchure.

This is why I am compelled to tell their stories.

Guha and Gwen–1977

She was a free spirit, a true bohemian, with long, sleek hair and John Lennon glasses, favoring embroidered tunics and leather sandals. With no make up, no fingernail polish, and no shaved underarms, she seemed exotic to my church girl sensibilities, just wild enough. Once Mom drove us south from Phoenix to Tucson to vist her adobe cottage in the middle of the desert. When she didn’t answer we went around to the back to peer in a curtain-less window. And there she was, sitting in Sukhasana (cross-legged) on her meditation cushion, eyes closed, face serene. Completely nude.

Gwen and Joel–1986

We visited her when she lived in Eugene and Seattle and San Francisco, though not in Hilo, Hawaii where she married a gentle bearded man named Guha. They both wore long, native leis, a symbol of their love, over white muslin. His easy-going ways tempered her high energy, and they lived their bliss for a time before parting ways. Later, she lopped off her hair in an asymmetrical cut that became her signature style, short enough to showcase the long beaded earrings she’d made herself. There would only be one more love, though they never wed. Joel, another beautiful man, this one with olive skin and dark curls brushed with silver, was mellow and generous. Another uncle to cherish. But again, only for a time.

Gwen and Sarah–1985

Auntie Gwen lived alone after that, but she was rarely lonely, filling her time with friends and family and travel with her widowed mother. She adored her nieces and nephews and loved watching us grow up. She endured her share of physical challenges, an aneurysm that left her without the sense of smell, breast cancer, knee surgery, chronic back pain. But these ailments never dampened her joie de vivre. She was a true optimist with an effervescent smile that lifted right up into her twinkling eyes as if to say, “Isn’t it great, this life we’re living?”

She told me my mother always accused her of being a “Pollyanna,” the caricature imbued with excessive cheerfulness and based on the heroine in a book of the same name, authored by Eleanor Porter in 1913. Pollyanna was brought to life on the big screen in 1960, with Hayley Mills playing the irrepressibly sunny orphan. A nearly life-sized doll with a dimpled grin and blond curls, wearing a gingham dress and MaryJanes was launched on the retail market to coincide with the Disney film. Either my mom or Gwen owned one because we found it, sitting upright in a corner, green eyes staring, when cleaning out my Grammy’s house after she died. My bet is on Auntie Gwen.

“Isn’t it great, this life we’re living?”

In her own defense she’d said, “What’s wrong with that? I like seeing the up side of things.” I admit, I myself am slightly suspicious of those with unyielding positivity. But of all her eccentric idiosyncrasies, because of (or maybe even in spite of) an inherently strong personality—a trademark feature of all the women in my family, I find Auntie Gwen’s rejection of gloom admirable. Something I will always seek to emulate. After all, it was her steady stream of buoyancy that kept her afloat her whole life. 

Gwen, Heidi, me, Sarah–2021

She died comfortably and peacefully in her home on Friday, January 8, 2021, surrounded by love, my brother holding one hand and her dear friend, the other. My sisters and I held her in our hearts from miles and miles away. Our goodbye, like too much of this past year, was remote. On Zoom. Auntie Gwen promised if we would hang bells, she would ring them. With quivering chins and welling eyes, we promised to hang them and watch for the sound of her eternal optimism, an omen of her tangible presence and a spark of magic in our ordinary days. And a reminder that “not so long ago and not so far away” a new story has begun. 

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View From A Quarantine

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

Leonard Cohen

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

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

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

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

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Resurgence of Hope

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

Mary Oliver, Wild Geese

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

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

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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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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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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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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.

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

And So This Is Christmas … Let The Grief In

Image by Pixabay

It’s late December, only days to Christmas. The kids are out of school and it’s dark already at 4:30 pm. All the lights burn in the kitchen where my husband is busy making sugar cookies with our girls. Flour dusts the counters and floors. A delicious aroma fills the house. I’ve got work emails to tackle, but I’m doing it reclined on the couch while listening to Christmas music. All my albums — traditional, classical, contemporary, instrumental, pop — are on shuffle and iTunes is creating our playlist. The music stays pleasantly in the background of my awareness until I hear the opening phrase of Happy Xmas.

“And so this is Christmas, and what have you done? Another year over and a new one just begun.”

The unmistakable timbre of John Lennon’s voice causes me to pause my work. I close my eyes and listen to the familiar, comforting melody.

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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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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