Category Archives: Gratitude

Resurgence of Hope

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

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

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

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

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

“I trust you,” I said, and meant it.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Way Home

Image by Gerd Altmann from Pixabay

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Lindasusan Ulrich

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

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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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.

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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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

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 garish sun.

William Shakespeare, Romeo and Juliet

IMG_0593

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

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

Big Rocks

I ran out of time. For a year I intended to write about turning 50 – a contemplative, insightful piece extoling the wisdom gained from living for half a century, but in a few days I’ll be 51.  Gone the way of shoulder pads and stirrup pants, like it or not, the time has passed.

I ran out of time though I’ve tried diligently to slow down my life and clear some space. Simplify, downsize, prioritize; these are my buzz words.  Progress is evident, although the perfect balance wherein I fulfill my roles of mother, wife, daughter, sister, friend and instructor, and manage to shave under my arms occasionally . . . this eludes me still.

The other night, my father-in-law, glancing at my Google calendar on my iPhone, its colorful blocks stacked atop, beside and overlapping each other like a patchwork quilt, looked from the screen to my face and said, “You’re too busy.”

This, I know.  How to change it, I do not.

“What can I cut, Dad?” I asked, a little desperate, a little exasperated.

Life seems to be speeding up, or perhaps it’s that more life is crammed into a single day.  I know my parents’ generation raised their families in a slower time. Compare a rotary phone on the wall, its handset tethered by a 10 foot spiral cord, to a smart phone, handheld and able to, at virtually any time, any place, connect to limitless information . . . and limitless other smart phones.  Technology adds convenience, but these instant connections, particularly in the form of text messages, demand instant responses, & idk if we r betr 4 it.

During the last week of school my moderately frenetic pace kicked up to severely frantic.  With routines out of whack, extra activities to manage and preparations for the upcoming summer vacation (‘vacation’ is truly a misnomer), the needle on my stress gauge pushed into the red.

With Type-A drive I tackled numerous projects at once, the way I know best – with sleep deprivation and coffee.  The goal; to knock out as many items as quickly as possible.  My monkey-mind chanted an endless to-do list like a scrolling marquee across the back of my mind.  I was running out of time.

In the midst of it all, Sydney had, as a result of a sleep study and the subsequent diagnosis of obstructive sleep apnea (common in kids with Down syndrome), a tonsillectomy, and was spending the week recovering at home. Before surgery, she charmed the staff with her smiles and snappy come-backs, but afterward, my brave girl was miserable and understandably, a bit grumpy.  We stuck to an alternating 3 hour dosing of Tylenol and Motrin to keep the pain at bay.  Armed with popsicles and ice cream and soup and mashed potatoes, we told her she could watch as much Disney Channel as she liked.

Since Sydney’s my easy-going kid, stoic with a high tolerance for discomfort and doesn’t complain often, I figured it would be, for the most part, business as usual.  Steven and I arranged our schedules to trade off being home, but I anticipated that while she rested I’d be able to toggle between making milkshakes and sending emails.

Uh, yeah.  No.

She didn’t really rest.  In fact, she was rest-less, never settling for more than 30 minutes at a time.  She couldn’t focus on TV, it hurt too much to eat (even ice cream), and she had no interest in her iPad.  She wanted to talk.  To me.

“Um, excuse me, Mom?”  Sydney asked from the table.  “Why my voice is low?”

I answered from my computer without looking.  “It’s from your tonsils, remember?”

I’d just blended a smoothie to chase a round of medicine, hoping for a few free minutes to compose an email.   “Don’t worry.  It won’t last.”

“Why can’t I go to school?” she asked.

“Hmmmm?” I replied, fingers flying over the keys. “School?”

“Why am I not at school?”  She repeated.

I could picture her face though my back was to her; eyes opened wide behind purple wire-frames, eyebrows arched high, her mouth frozen in the shape of the last vowel sound she made.  She’d asked this question every day, several times a day, for the last week.

“You know why.  You tell me, why you aren’t you in school?”  I said trying to be patient, though I felt anything but.

“Because I had my tonsils out?” she asked, acting unsure.

But she knew.  I’d noticed her strategy of waiting for me to pick up my phone, then immediately starting in with obvious questions to which she knew the answer.  The more I needed to concentrate, the more effort she made to divert my attention.  And the more she kept me from working, the more annoying it became.  In front of me, my iMac displayed the afternoon’s tasks; open Word documents, several tabs on the web browser, iTunes with my playlists for teaching, an unfinished email to Sydney’s teacher.  And my calendar.  Always my calendar.

Behind me, my daughter waited for an answer.

Realizing it had been several seconds, I turned and looked directly into her eyes. “Yes, honey,” I said firmly, “because you had your tonsils out.”

Her days were long, her throat hurt and she was lonely.  My compassion stirred when she said, “I just miss my friends, Mom.”

“I know, sweetie.  I’m sorry.” I got up and walked to her, resigned to the conversation for the moment.

“Good job! You drank your whole smoothie!”  I said with over-the-top enthusiasm as I took the empty cup to the kitchen sink.

She soaked up the praise with a smile and a shy little shrug.

“I know you miss your friends, but you’ll see them at yearbook signing, remember?”

She perked visibly at the mention. “Oh, yeah!  Yearbook signing. On Thursday, right?”

“Yep.  On Thursday.”

She sat without speaking as I rinsed dishes and loaded them into the dishwasher.  Though I heard my daughter’s angst, my monkey-mind chattered louder, calculating what was due when.  I was running out of time.

“Mom needs to get some work done now, Syd.  Okay?”

She was quiet.

“How about a pudding?”

She nodded.

“Do you want anything else?” I asked.  “I can put on a movie.”

“No, I’m fine,” Sydney said, matter-of-factly.

I registered her disappointment, but I was up against a deadline and the detailed work required focus.  I sat down once again and the clacking of the keyboard filled the silence.  For 15 seconds.

“Mom? Excuse me.”

Like clockwork.

“Wow,” I said, taking a deep breath.   Patience, Lisa.  “You sure are talking a lot today.  Doesn’t that hurt your throat?”

“No-oo!” she answered emphatically.  “I just . . . , I just have tonsil breath,” she stammered, referring to the unfortunate halitosis following a tonsillectomy.

Her voice, from behind, carried recognition; she knew what she was doing, but couldn’t stop herself.  I didn’t catch the rest of what she said; I was reading the three texts I’d just received. My adrenaline rose as my shoulders tensed up to my ears.  And my monkey-mind chanted away.  Running. Out. Of. Time.

“I know I’m talking a lot,” Sydney admitted.

Tapped, no restraint remaining, I interjected, “And . . .  you’re driving me CRA-zy.”

An offhand remark, casual, yet careless, it stung with more bite than was intended.  But I didn’t know that yet.  I went on with my work for a minute before a subtle energy permeated my unraveling focus.  I felt more than heard something and turned around.

Grimacing with silent sobs, Sydney bent over her pudding, shoving bite after bite in her mouth until it overflowed.  She inhaled sharply and coughed.  Snot billowed from her nose until her face was a mass of chocolatey mucus.

“Oh, honey!”  I jumped up and grabbed a Kleenex, wiping her nose and mouth quickly.   “Swallow,” I said, holding the straw of her water jug to her mouth.  “Breathe,” I directed.  She cleared her throat repeatedly then took a shaky breath as she tried to calm herself.

When she could talk, she said softly, “I get it, Mom.”  Speaking with a wisdom I forget she is capable of, her words held the implication that she did indeed understand how swamped I was and that she was doing her best not to need too much from me.

“I know we have a busy schedule?” she continued, shrugging and turning one palm up as if to say, ‘it is what it is,’ “but,” her small voice quivered, “you’re going to the gym and . . . ,” she paused, “And . . .  and . . . and I just really . . . “

I waited, my attention fully–and finally–and my daughter.

” . . .  miss you.”  The last two words came out high-pitched and barely audible.

Her chin trembled. She tucked her head down and reaching her index finger underneath her glasses, and wiped fresh tears from her eyes.  Lifting her head with a slow inhalation, she looked to see if I was watching, then choked out the words, “but, I . . . just . . . NEED . . .  you!”   And with that, she abandoned her fight to hold back the tide of her emotions.

Remorse hit me like a wave.  My heart broke open wide. The tightness in my chest loosened and slid away as I gathered her in my arms.  She buried her gooey face in my belly and we both cried.

In the past I would have castigated myself for being a bad mother, but as an older parent, my compassion extends to myself as well.  With maturity comes the recognition that when I’m drained by overdoing, I lack what she needs from me; it’s just not there. I can’t make it materialize.  Conclusion: In order to take care of Sydney, I need to take care of myself.

The overdoing has to stop.  This I know.  How I to change it, I have not known.  But perhaps the analogy of sand, pebbles and rocks in a glass jar illustrates how.  My time – a finite amount – is represented by the glass jar; the sand, pebbles and rocks are all the many, many things that fill that time, ranging from smallest to biggest.  Fill the jar starting with the sand and only a few big rocks will fit.  But reverse the order and miraculously, everything slips into place.  It becomes clear to me: if the big rocks are gonna fit, they must go in first.

My fatal flaw? Everything has been a big rock; I’ve missed the distinction between size and texture and value.  But now I know it just ain’t so.  Obviously, Sydney is a bona fide big rock along with my other children and my husband.  But, what about me?   Is it possible to forgo some sand and pebbles to make room for a big rock of my own?  I don’t know whose permission I’ve been waiting for.  Who’s jar is it, anyway?  In my 50th year, these shifting perceptions and realigning priorities influence my choices more than external expectations.  The voice I’m attuning to now comes from within – not without – myself.

My friend, Jackie once told me, special-needs mom to special-needs mom: “There is just no way to get it all done, so I have to let some things, the less important things slip.”  Since it is my jar, I get to decide what’s more, and less, important.  If worry about the big rocks, the rest can slip.  No more running out of time for what really matters.

I untangled from Sydney and pulled back to look at her puffy, reddened eyes.  I sighed, smoothing her hair back from her face.  Such a precious girl.  My daughter.

“Do you want to watch a movie?” I asked.

She looked crestfallen.  I’m sure she was thinking, ‘Mom is shoving me off again.’

I added, “With me?” and a smile lit up her face as we headed to the couch.

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Filed under Adolescence, Down syndrome, Enlightenment, Family, Gratitude, Letting Go, Motherhood, Parenting, Self-Care, Special Needs, Stress