Tag Archives: Daughter

Just Breathe

Re-posted from March 6, 2014

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

Sylvia Plath

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

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

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

Sydney at seven

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

{Inhale}

{Exhale}

{Inhale}

{Exhale}

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

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

Swallowed in Sorrow

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

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

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

Her phone call after the biopsy replays frequently in my mind; my unsuspecting hello met with silence, then panic. “Mom! It’s CAN-cer!”, the strangled words followed by wails of anguish. Her crying was no different from the terror-filled cries at 2:00 am that sent me bolting to her crib, or the sharp, cascading screams recognizable from across a crowded playground, or the wracking sobs of a heartbroken teen, doubled over in my lap. This timeless trigger awakens my primal need to protect. But I can’t fight this.

After diagnosis, my crying jags came at 4:00 am when the world was motionless and moonlit. My fingers grasped for something to hold onto and came away with handfuls of air, like the strands of hair spooling from my daughter’s head after chemo, un-rooted. When genetic testing proved positive, sadness galvanized into anger. Cancer may take her hair, but it will grow back. Her breasts will not. The loss is palpable, maiming. “Take mine!” I screamed into the wind. “I’m old.”

As mothers, we champion our children’s cause. We’re strong, safe and rooted. If we can’t fix it, we walk with them, holding their pain. It’s never a question; we just show up. And tomorrow, I will. But tonight I am swallowed in sorrow. Tonight I long to lean on my own mother, but she died a year ago. At times like these I’d call Mom and she’d be up, her circadian rhythm peaking at midnight. She’d walk me through the long night, holding my pain. She’d show up now if she could.

I close my laptop, extinguishing its phosphorescence. Regardless of my angst, I need to rest. Burrowing under the covers, the soft light of the moon caresses my face. I close my eyes and ache, like a child, for my mom. Suddenly, quietly, she’s here. My jaw unclenches. I breathe out. An almost imperceptible weight lowers onto the bed. I feel her hand smooth my brow, fingering a curl and pushing it back. Swaddled in peace, I surrender, and drift into sleep.

Published May 30, 2017: COMO Living Magazine

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Filed under Aging, Babies, Breast Cancer, Cancer, Family, Grief, Letting Go, Motherhood

Eulogy To My Mother

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

William Shakespeare

Wallow High School Senior Photo 1961

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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Filed under Aging, Family, Grandparents, Grief, Growing Up, Letting Go, Loss, Memories, Motherhood, Parenting

In Her Image

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

African-American Spiritual

Katie Lyman
Age 20, circa 1933

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

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

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

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

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

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

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

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

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

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

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Filed under Aging, Family, Growing Up, Letting Go, Motherhood, Parenting

Confessions Of A Reluctant Stage Mom

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

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

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

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

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

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

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

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

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

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

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

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

“LOOK up. Your eyes, Syd!”

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

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

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

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

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

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

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

It’s even worth skipping brunch.

 

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

Enough

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

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

Mmm-hmm. Yeah.

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

 
 

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Becoming

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

She cried and mumbled something incoherently.

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

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

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

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

Some things, we don’t grow out of.

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

And Miles To Go Before I Sleep

It’s morning and I awake, not to an alarm, but to bright sunlight streaming through a crack in my door. Cradled maternally by my mattress, I’ve slept so hard the sheets have left deep creases on my skin. My consciousness attempts the swim  through layers of fog; “What day is it?”  “Where, exactly, am I?” With great effort, I roll over and squint, reading the digital numbers on the bedside clock: 8:29 a.m. The house is quiet; no one’s up yet.  And I remember: there is nowhere we have to be! Two months into summer vacation and today is our first free day — no camp, no summer school, no nothin’. I sink back under the delicious covers. In a few minutes Sydney and Haley will be ransacking the kitchen, eating peanut butter out of a jar and reheating chicken nuggets for breakfast. But I don’t care.

I love my bed and I’m not ashamed to admit it. Just the thought of my comfy pillow-top soothes my strung-out mind. This bed knows the contour of my body and calls to me seductively, “Lisa, come lie down.” And I do, whenever possible. Late afternoons, especially, once I am horizontal, I’m gone. People who nap are lazy, I used to think. Back then I was judgmental and more than a little pious. Back then I had yet to become a mother.

Almost 30 years later, I can’t remember the last time I felt rested. Child-rearing and chronic fatigue go hand in hand like hot wings and heartburn. As a new mom, sleep-deprivation on the level of Chinese water torture started when my first adorable but very loud newborn arrived and immediately took all nocturnal activities hostage. My initial resistance to being jolted out of an altered state turned to incredulity when I started to realize  I would be sleep-walking through life long after 3:00 a.m. feedings ceased. The epiphany was driven home after it was too late, after I chose to have more kids at an ‘advanced maternal age,’ thus clinching the deal: I’ll rest when I’m dead.

Facing this reality is much like processing grief; it comes in five stages: denial, anger, bargaining, depression and, finally, defeat. I mean, acceptance. The stages aren’t always in that order and some resurface frequently. Like bargaining. Especially bargaining. We all know one should never negotiate with terrorists, even if they’re tiny.

But in our defense, they’ve worn my husband and I down over the decades, reducing us to desperate acts committed in exhaustion-induced delirium. “Will you lie down with me?” they ask.  And we cave, letting them snuggle up as we read a story, fighting to keep our eyes open, but four hours later we wake with a start, fully clothed and drooling.  Or worse, we let them into our bed. But that, my friends, is a trap. All angelic with the gossamer eyelashes and the delicate skin, they curl up close, their soft breathing rhythmic and hypnotic. They lure us in and lull us to sleep in the sweetest of embraces. Bliss descends. For about 5 minutes.

What follows can’t really be called sleep; collapsing into a coma only to be startled awake by a sharp knee in the shin or a sudden slap across the face. Through the night, they migrate across the bed’s surface. Rooting like baby pigs, they thrash and turn, never still for more than a few moments. Heat-seeking, their little feet reach for the nearest body part. The broad expanse of Daddy’s back makes a good target, right between the shoulder blades. By morning, the bed resembles a war zone, the blankets wadded and twisted or in a heap on the floor.

The family bed is a myth. It’s actually more like musical beds. At some point the willingness to do anything for a good night’s sleep overtakes good judgment. Dad often is exiled from his own bed. Gone in search of a place to land, he ends up downstairs in the guest bed, or on the couch, or in a bunk bed, wedged up against the wall, his 6’3” frame contorting to fit — or not — the twin mattress with twin-sized blanket and not-so-clean twin sheet that slides over the protective plastic liner.

My poor husband is a character from Dr. Seuss’ “One Fish, Two Fish, Red Fish, Blue Fish.”

“Who am I? My name is Ned. I do not like my little bed. This is not good. This is not right. My feet stick out of bed all night.”

He’s been displaced so often the girls refer to the master bed as “Mommy’s bed” and frequently hit me up to fill the vacancy.

“Can I sleep with you tonight?”

“No, Daddy is sleeping with me. In his bed.”

I should be grateful that only 50 percent of my children are difficult sleepers; in each of the two sets, there is one good sleeper. Of the first batch, Melissa was the one, sleeping like a dream and waking up happy and contented. Jeremy, not so much. He was never easy; putting up the good fight at bedtime and waking hyper or cranky. He ran on two speeds: turbo-charged or out. Constant ear infections caused him to wail in pain for hours, always in the middle of the night. I remember rocking him, both of us drifting off just as the sun came up. He never learned how to get to sleep by himself and for years, though he’d start out in his own bed, morning would find him on the floor next to my side of the bed.  I stepped on him more than once.

With this second round of kiddos, Sydney’s the piece of cake. The cliché that kids with Down syndrome are good sleepers is true. As a baby she would lean out of my arms and reach toward her crib at nap time. As a teenager she says, “I’m tired. I’m ready for bed, Mom,” and down she goes. Mornings start with a hug and a shy smile and flow from there. Easy.

Haley couldn’t be more opposite. Bedtime drags on interminably: She’s thirsty, her head (throat, foot, bottom) hurts, she doesn’t have the right pillow, she’s too hot, too cold, her nose is stuffed up. She can’t sleep. She can’t stop thinking. She’s excited, she’s sad, she’s needy. “Mommy, I want you,” she says, reaching her arms out, fingers clutching. “I haven’t spent any time with you!” Steven calls her a little tick.

But see, I need to count on my children being unconscious for some amount of time during each 24-hour cycle.  With a child like Haley, there is no such respite. She comes stealthily into our room, appearing suddenly at my bedside, her hand like a woodpecker tapping my shoulder. “I had a bad dream,” she whispers loudly. Or sometimes she just climbs in over us; jostling the whole bed and wiggling her way to the middle. A few times she walked in and  flipped on the overhead light.

Though our older children eventually grew out of sleep disturbances, my weariness remained; the cause merely shifted. Teething and nightmares and the sudden onset of stomach flu at 1 a.m. morphed into loud music and late-night phone conversations and the unbidden images of worst-case scenarios 30 minutes past curfew. Anxiety and stress and overwhelm continued to plague my dreams as they became adults and headed into the wide world. Now, they’re having babies of their own; more  worry  to steal my sleep. There’s no going back; parenting is a long-term gig.

Coffee is my salvation in the morning and a glass of wine in the evening, a reward for making it through the day, helps me unwind. But the cycle sometimes leads to insomnia, the most maddening affliction – when the children are finally sleeping, I lie wide awake, completely and utterly spent, yet unable to let go. And if I’m perfectly honest, there is, as well, the self-induced lack of sleep; the time I carve out of my repose, because, by damn, I must have some to myself! I set my alarm for 4:00 a.m. to teach a 5:30 a.m. class, sacrificing the extra Zs so I can meditate and prepare, unhurried and in peace. I stay up late, until 2:00 or 3:00 a.m. to write, because the house is quiet then and I am, at last, alone.

The other day I ran across my old journals from the mid to late-80s. Steven pulled down a few dusty boxes from the attic and as I paged through entries written by my much younger self, I was intrigued, as if observing someone else’s life. The narrative was passionate with a tendency for the dramatic and the words that emerged repeatedly were, “tired,” “exhausted,” “overwhelmed.” If I could, I would say to that young woman, “Honey, you’re going to be tired for a while – it comes with the job – but you’ll be all right. Take really good care of yourself; it’s crucial if you are to go the distance. Rest when you can. Take naps (it’s not lazy). And remember the love. It will see you through. Sometimes, you’ll just be tired. And that’s okay. It will all be worth it. Trust me.”

I’m still tired. I fall asleep at rock concerts, stop lights and in front of the TV; I nod off at movies, kids’ concerts and even weddings; I pass out while reading before bed, my book slipping out of my hands, reading glasses still on, mouth open. I half-wake to my husband as he tenderly takes my book and glasses, and placing a kiss on my cheek, turns off the light.

I’m still tired, but not all the time. I start most days feeling energetic and hopeful, though the demands of our busy family leave me running on empty by afternoon.  It’s just the way of it. This is my life; the one I chose and the one I love. Haley said it best: “In the morning you’re ‘Happy Mommy.’ In the evening you’re ‘Tired Mommy’ because we accidentally exhaust you.”

The little (and big) people I’ve birthed don’t mean to wear me out, they just need me. Which is an amazing feeling. I’m the Mom. And if it only takes a nap to turn me from Tired Mommy to Happy Mommy, fetch me my pillow.

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Filed under Aging, Babies, Childbirth, Down syndrome, Family, Motherhood, Parenting, Self-Care, 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

Through Grammy’s Eyes: A Birth Story

Every birth has a story, ripe for the telling, though the tale varies with the perspective of the teller. The closest view belongs to the mother; it is her body, after all, that houses the new life, she who evicts her burgeoning occupant. Spin the lens 180º and it is the father’s story. Once removed from the action, he nonetheless has the most direct view. Broaden the angle, overlay a generational déjà vu, and it becomes the grandmother’s story. She observes, like the father, from the outside, but she feels, like the mother, from the inside. She is the non-impartial witness.

This birth story, told through the grandmother’s eyes, is mine.

After teaching my yoga class this morning, I find I have several voicemails from my son, Jeremy, whose wife is rapidly approaching her due date. I’ve been waiting for this call, prepared to drop everything and go for the birth of their first child; my first grandchild. And now it’s time.

As I pack with shaking hands, I think how short a time ago it was that I hastily threw clothes in a suitcase in hopes of making it to a hospital in time. To say goodbye to my dying mother-in-law. The circle of life plays out; simple, but profound. One life ends and another begins.

It’s 5 p.m. before I get on the road, with nearly 500 miles to cover. For at least a few hours, the Bluetooth in my car feeds me the comfort of my mother’s voice from far away as we reminisce about Jeremy’s birth 27 years earlier, at which she was present. We share incredulity over our advancing roles: from mother to grandmother, from grandmother to great.

And the rest of the night, speeding along the highway, I’m alone in the dark with my thoughts. A grandbaby? Surreal. This grandbaby? Miraculous.

Early in the pregnancy, Jeremy texted me an ultrasound image of a little peanut, following moments later with a phone call.

“Look at that BABY!” I squealed.

Early on, Jeremy sent us an ultrasound image – a little peanut – following moments later with a phone call.  My exuberance was met with silence on the other end.  I waited as my son found his voice.  He choked out the words, “Mom, there might be something wrong with the baby.”

My exuberance was met with silence on the other end.

When my son found his voice, he choked out the words, “Mom, there might be something wrong with the baby.”

From miles away my heart broke. The pregnancy could terminate at any time, they were told, and if it did go to term, there was a high probability of chromosomal abnormalities. Testing would yield more information, but ultimately, there would be no definitive answers until the baby grew. Or didn’t.

We waited. We hoped and prayed.

 

Through the second trimester, much to our relief, evidence of the congenital defect diminished. Further testing ruled out Trisomy 13, 18, and 21. And confirmed it was a boy. They named him Ashton.

As delivery drew closer, it appeared he was in the clear. Except for one small thing: the slight possibility of a heart defect. The parents weren’t worried, but I remained guarded. Perhaps it was because, although I’d had extra perinatal testing with my daughter, Sydney, including 3D anatomical ultrasounds, she was born with Down syndrome.  Or maybe it was just my maternal urge to shield them from unforeseen heartache.

Tonight, though, I’m jazzed like a kid on Christmas Eve and all I can think about is getting there before the baby does. At 12:30 a.m., armed with snacks and an overnight bag, I weave through the deserted teaching hospital to the labor and delivery suite. My son stands by his wife’s bed, though he’s beginning to wear thin after a 12-hour paramedic shift. Going on 36 hours with no sleep is not the ideal time for their big event. Carly greets me with a beautiful smile. She’s been laboring for nine hours and I wonder if she has a high tolerance for pain. Or a gift for masking it. Or both, I decide.

I unload and settle in. Her contractions rise and fall on the monitor, as does her blood pressure. Jeremy contorts his body onto a small couch and instantly he’s asleep. I sit with Carly. She pauses to breathe through the peaks, closing her eyes and lowering her head, enduring each one with a composure I’m sure I never had.

Jeremy wakes and I trade him places. I drift in and out, then wake. Together we wait. We talk, rest, wait some more. And so it goes through the night until the nurse tells us dilation has stalled after 12 hours. Pitocin is prescribed. Carly declines an epidural and my admiration grows as I watch her endure four increasing doses of the drug.

After 15 hours of labor, the last three, un-medicated Pit labor, the pain begins to gnaw at her resolve. I recognize her agitation and resonate her agony.

Mothers-in-law walk a tightrope between intrusion and indifference. 

I had a wonderful example. In my new role, I want to strike the perfect balance; involved, but not over-bearing, available, but at arms-length. And in childbirth especially, I defer the rightful maternal province at Carly’s side to her own mother.

But now, in the harrowing depths of transition, there is just me. Jeremy, at a loss, looks helplessly on. I move next to her head and stroke her hair, murmuring softly in her ear. Does she want me here? I don’t know, but in this moment, I will mother her. And she lets me. As I console her, she becomes my daughter and my voice soothes her pain.

I had no epidural when Jeremy was born and every wrenching seizure ripped through my writhing body. With eyes wild and panicked, I looked not to my husband for help, but to my mother. She rubbed my shaking legs and whispered words that lifted me above the pain to an other-worldly place, allowing my body to do what it was designed for. And each time I slammed back down into the sharpness she eased me up again.

I try to bring the same transcendence to Carly. By her side as she rides each wave, cresting and crashing, I feel her surrender to the suffering. But as her contractions climb, so does her blood pressure, and her cervix remains unchanged. It’s just before dawn and the medication has failed to produce results. As her stamina wanes, discouragement creeps in, and though it isn’t in her birth plan, she agrees to an epidural.

To everyone’s relief, her pain subsides and she is able to dilate. It’s finally time to push.

Out in the world, the sun is rising. Inside these walls, the day shift arrives. Medical students ready the room, bringing in equipment and supplies. I tell the kids I’ll wait outside so they can have privacy, but they answer at the same time, “Please stay.”

Their young, amiable doctor strolls in. “Let’s try to have a baby,” he says.

‘Try?’ I think, warily. He tells us a neonatology team will be on hand when Ashton is born. Another red flag; the baby’s heart?

The room is crowded and I pull back, keeping an eye on the monitors. Contractions are close, and with each one mom’s blood pressure goes up and baby’s heart rate goes down. The easy-going doctor informs them that meconium is present which means the baby could be a little stressed. Casually stationing himself between Carly’s legs he tells her to go ahead and push.

Jeremy doesn’t pick up on the vibe and says excitedly, “Mom, get the camera!” But I hesitate. None of the students are moving. The doc hasn’t fully gowned. There aren’t any lights or sterile drapes on Carly. Something’s not right. Time takes on a rubbery quality yet everything happens very fast. I’m aware of the descending red numbers of the baby’s heart rate; of Carly, determined, with unwavering trust in her doctor. And of my son, steady, but for just a second, frozen. I step up and urge him to support Carly’s back. Straining with all her strength, she pushes until long after her breath is gone. She pushes so hard her face turns dark purple and my concern skyrockets. Collapsing back onto the pillow, she gathers herself and surges forward again, exerting her whole body to expel the life within. Heroically, she fights to birth her baby.

And watching, I fight tears as my love for her grows exponentially in moments; I have never seen anyone so brave. I fight tears as I’m overcome with pride for my son; he’s become a man before my eyes.

I fight tears, too, because I know this is not going well.

I watch the doctor watch the monitors. Scanning his face and body language, I observe calmness in his demeanor, but sense the undercurrent of his apprehension. After several pushes, he stops Carly and tells her, with no urgency in his voice, the baby isn’t descending. He’s sunny side up and not tolerating the compression of labor. His heart rate is dropping below 100 with every push, which may be an indication of a heart issue. And Carly’s BP is continuing to spike. For these reasons he’s recommending a C-section, just to be safe.

Carly serenely accepts yet again what she did not plan. More disappointed than frightened, she agrees, though her consent is a formality; to his credit, this young surgeon has kept the critical nature of the situation from alarming mom and dad.

Abruptly, med students scatter and nurses converge. Phone calls are made, oxygen is placed over Carly’s nose and mouth, the brakes on her bed are kicked up and the whole apparatus, IVs and all, are wheeled away to surgery, leaving Jeremy and I looking after.

Just my son and me in the empty room now. He retreats to the bathroom and I reel, thinking not only of the baby, but of Carly and the stories I’ve heard of bleeding, strokes and mothers dying in childbirth. I need to shake this. I need to be strong for my son.

He comes from the doorway, my 6’0″, 200 lb. boy, and gathers me in his big arms, burying his head. “I don’t know what I’d do if you weren’t here, Mom. I’m so scared.”

 

He sobs into my neck like he did when he was 5-years-old.

“But I’ve got to be strong for Carly,” he says, wiping his eyes with his sleeve.

When he gives voice to my own thoughts we weep together. We’re interrupted by a nurse who has come to take him to the OR.

He shakily dons paper scrubs, and in his rush, shoves his leg inside the pants with his shoe still on. His foot is stuck. He loses his balance. I reach to steady him and bending awkwardly, I attempt to dislodge his shoe. It’s a little ridiculous. And very tender.

He still needs me, but life demands that he stand on his own.

Now it’s just me. The room seems very big. Time bends again as I wait. An hour? 15 minutes? I can’t tell. But then, my son is here, reassuring me quickly that everything went well; baby boy is here and mommy is doing fine. Relief washes over me and abruptly, I am bone-tired.

Jeremy tells me he got there just in time to witness his son emerge and take his first breath. Carly, drugged and woozy, saw her newborn briefly as he held Ashton next to her face, but the family bonding was cut short when the nurses whisked the baby to the NICU and the awaiting neonatology team. Yet again, my daughter-in-law had to let go of what she dreamed: no laying her newborn on her chest, skin-to-skin, no examining him from tiny toes to downy head, no photos of her husband holding their son in his first minutes of life.

After surgery, she returns to the room — without her infant — and is told she needs magnesium for preeclampsia; her blood pressure isn’t coming down. Meaning, she’ll be bed-ridden and it will be 24 hours before she can see her son.

“Nothing is going the way we planned,” she says wearily, and my heart squeezes for her. I want to tell her I’ve learned that little in life ever does.

But I’ve also learned it’s what we don’t plan that bring us the greatest joy.

 

On the second day of his life, after his mama holds him, I meet my grandson. The NICU nurse lifts the IV lines and wires as Jeremy gently lays the little bundle in my arms. I gaze lovingly at the child of my child. I kiss his feather-soft head and inhale the scent of his skin. He curls his whole hand around my pinky finger, squeezing until his knuckles whiten.

‘I’ve got you, sweetie,’ I whisper.

Truthfully, he’s got me. Already wrapped around his little finger.

A quiet, yet momentous change is occurring, like the flutter of a butterfly’s wings halfway around the world. Life is no longer the same; I can feel it. For me, for my son. For all of us.

Every birth has many stories, diverging in places depending on the vantage point of the teller. But they all return to the moment when a new life enters the world and nothing is ever the same.

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Filed under Babies, Childbirth, Enlightenment, Family, Grandparents, Marriage, Motherhood, Parenting