*Reading given at the Unitarian Universalist Church of Columbia, online, August 9, 2020
“Always have enough courage to trust love one more time and always one more time.”
Maya Angelou
In what do I place my trust? This profound, existential question is, for an inherently trusting person, difficult to quantify. Before the pandemic, I trusted my alarm to go off, my car to start, and my phone to keep me on task. I trusted there would be money in the bank, food in the fridge, and job security for my partner and myself. From the sturdiness of my home and the safety of my Midwestern burg, I trusted the sun to rise and set on another ordinary day.
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. iTunes shuffles our collection of eclectic albums, creating the playlist that plays pleasantly in the background. Until the opening phrase of Happy Xmas catches my ear.
“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. I close my eyes to listen. Such a familiar, comforting melody.
“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.
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.”
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 vantage point. 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 yoga class in my home of Columbia, Missouri this morning, I notice several voicemails from my son, Jeremy, whose wife is rapidly approaching her due date. I’ve been waiting for his call, prepared to drop everything and head to Oklahoma City for the birth of their first child; my first grandchild.
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, then, to say goodbye to my dying mother-in-law. The circle of life, profound in its simplicity, plays out. 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.
The rest of the night, speeding along the highway, alone in the dark with my thoughts. A grandbaby? Surreal. This grandbaby? Miraculous.
Early in the pregnancy, Jeremy texted me a black and white ultrasound image of a little bean and followed moments later with a phone call.
“Look at that baby!” I squealed upon pickin up.
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.”
My heart broke from miles away. They were told the pregnancy could terminate at any time. 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 waited some more.
Through the second trimester, much to our relief, evidence of the congenital defect diminished. Further testing ruled out Trisomy 13, 18, and 21 and revealed the baby 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. His parents weren’t worried, but I remained guarded. Perhaps because I knew prenatal tests weren’t always conclusive–my third, “later-in life” child was born with Down syndrome. Or maybe it was my maternal urge to shield them from the shock of an unforeseen diagnosis. 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 shift as a paramedic. Approaching 36 hours with no sleep, he is not in the best shape for their big event. Carly greets me with a beatific smile. Unfazed, she’s been laboring for nine hours. I wonder if she has a high tolerance for pain or a gift for masking it. Both, I decide.
After unloading, I settle in to watch the monitor as Carly’s contractions, and more concerning, her blood pressure, rise and fall. Jeremy contorts his body onto a small couch. Instantly he’s asleep. Just the two of us now, I sit with my daughter-in-law. We chat and she pauses to breathe through the peaks, closing her eyes and lowering her head, enduring each one with a composure I’m quite sure I never had.
Jeremy wakes and I trade him places. I drift in and out, then wake. Together we wait. We talk, we rest. We wait more. And so it goes through the night until the nurse tells us that after 12 hours dilation has stalled and Pitocin has been 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, unmedicated Pit labor, the pain begins to gnaw at her resolve. I recognize her agitation and resonate with her agony, remembering well the desire to leave my body and escape the pain.
Mothers-in-law walk a tightrope between intrusion and indifference.
As I had a wonderful example, I aim to strike the perfect balance in my new role. 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 Carly’s 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 in her vulnerability she lets me.
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 who rubbed my shaking legs and whispered words that lifted me above the pain to another 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 even still, 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, when her pain subsides, she is able to dilate fully. And finally, it’s 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.
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 very eyes.
I fight tears 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 in the empty room looking after them.
He retreats to the bathroom and I reel, thinking not only of the baby, but of Carly and the stories I’ve heard of hemorrhaging, strokes, and mothers dying in childbirth. I shake my head to ward off these images. I need to be strong for my son.
He moves 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 it releases my tears and 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 and he loses his balance. I reach to steady him and, bending down awkwardly, I attempt to dislodge his man-sized shoe. It’s a little ridiculous. And very tender.
He still needs me, even as 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 suddenly, 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, no skin-to-skin contact, 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. 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 life, after his mama holds him, I meet my grandson. The NICU nurse lifts the myriad IV lines and wires as Jeremy gently lays the little bundle in my arms. He’ll be here for some time and I couldn’t be more grateful for the excellent reputation of the Oklahoma Children’s Hospital. After a diagnosis of aortic coarctation, Ashton will undergo surgery on his newborn heart, the size of a walnut. While we wait, his very life will be held in the skilled hands of the pediatric cardiac surgeon.
Now, 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, though 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 perspective of the teller. But they all return to the moment when a new life enters the world and nothing is ever the same again.
One love, one blood, one life. You got to do what you should. One life with each other, Sisters and Brothers. One life, but we’re not the same. We get to carry each other, carry each other.
One, U2
She doesn’t even know them. Not personally, anyway. Connected by three degrees of separation, she’s a friend of a neighbor of the family, this mom, dad and two sons, leading ordinary lives until a few weeks ago when their world was up-ended when the youngest brother received a shocking diagnosis: Stage 4 Medulloblastoma. She doesn’t know them, but no matter. She, too, is a mother, and that’s enough. Today she’ll shave her head for an 8-year-old boy she’s never met.
Movie-star gorgeous, sitting tall and poised, her hands shake in her lap. She is prepared to be rendered hair-less. Bald. A statement of undeniable solidarity. Long, silky tresses gathered into ponytails sprout from her head, Medusa-like. Her gift is a double offering as the endowment of the hair itself will go to Locks of Love to make wigs for children who have lost theirs. Children like Aiden.
The lights on stage are bright. She squints, looking out over the darkened room. The typical late night crowd of the live music venue has been replaced this Saturday morning with people of all ages. The place is packed. With barely enough room to move, little ones are carried and bigger children are pulled by the hand through clumps of people as their parents edge past to congregate up front. Food vendors and silent auction items line the walls. The community has shown up. They intend and expect to give their support. What they don’t expect is how much they will receive in exchange.
Suspense hangs in the air as the clock ticks down to show time. In the spotlight, three more women–mothers, all of them–sit on folding chairs, draped in plastic capes snapped at the back of their necks. One lives next-door to the family, grown close as neighbors will, by the proximity of their shared lives over the span of years. A drink in the driveway after work, a rant of parenting frustrations, a new gardening idea, a remodeling project. A sick child. Dark brown wavy hair hangs past her shoulders and bangs frame her pretty face. Brushing a tear from the corner of her eye, she blinks her long eye lashes; extensions that, along with big earrings, will soon accessorize her new look.
The next woman’s hair, thick and black, has been divided into segments, also going to Locks of Love. She smiles broadly, exuberance radiating from her face. Aiden and her young son are best friends and the families neighbors. The boys went to school, camped and rode scooters together until recently. Until the news.
It started with headaches that worsened. Doctor appointments revealed nothing conclusive, but Aiden’s parents persisted. Asking questions, insisting on more investigation, tests and more tests were performed and finally, a 2 ½ inch tumor resting on his brain stem was discovered along with other masses in his brain and tumors on his spine. Not what anyone wants to hear, the family had their answer: a rare and aggressive form of cancer. And with it a surreal new reality filled with surgery, hospitalizations, drugs, finding the best treatment options available, and relocating far from home to get it.
Mom and Dad are Skyping with Aiden today from his hospital room. Technical difficulties threaten to thwart success and the disappointment is palpable when the connection drops. After a few more tries, suddenly, there is Aiden, larger than life, yet with a vulnerability that makes him appear small no matter how much of the wall is covered by his projected image. Cheers go up from the throng when this little boy comes into view. His parents lean into the camera and smile their gratitude. The shavees blow kisses and shout their hellos. And with the family’s presence, preparations are finally complete. It can begin.
Excitement buzzes through the audience as people whisper their amazement to one another.
“They’re so brave.”
“I could never do it.”
“Can you imagine what they’re going through?”
Referring to the other mothers, these things can also be said of Aiden and his parents. In the air, something magical emerges, an alchemy of love beyond description, and it is the last woman on stage who has made it happen. Neither a neighbor or a stranger, this mother is an acquaintance, a friend of a neighbor, who socialized with the family casually at barbecues and birthday parties. For years she knew that one day she’d make this choice, for many reasons and many people, not the least of whom is her own mother who died with no hair on her head after enduring not one, but two bouts with two different types of cancer. And the cruelest truth is this: the second cancer was caused by the curing of the first. This woman is colorful from her sassy chin-length brunette mane streaked with red and purple, to her shining eyes and dimples etched deeply into her round cheeks. She radiates joie de vivre even when her voice quivers with emotion during her welcome speech.
Initially, she envisioned a dare; a fun, gutsy campaign culminating in a bold public display that would garner cash, cold and hard, for the family in need. “How much would you pay,” she queried, “to see me shave my head?” When the other three added their momentum, issuing their challenge, a movement was born.
“What are you willing to give to this family if we are willing to cut off all our hair?”
Who wouldn’t admire them enough to donate money, based on their chutzpah alone? No doubt, funds will be raised, but more than money, the rallying of a community around one family garners energy. Efforts expanded as more and more people volunteered, good people who wanted to do something meaningful. Besides these four, at the end of the day, dozens of others, women and men, mothers and fathers and uncles, even Aiden’s classmates—both girls and boys—will have stepped up and joined the ranks of the hairless to say, “We’re with you.”
On stage, they reach out, hand to hand, forming a linked chain, shaking and laughing and blinking back tears. There’s no turning back. The time is now. And as this realization takes hold, the noisy, celebratory atmosphere is charged with a profound undercurrent of intensity and an overtone of the sacred. Enrapt, people find themselves strangely moved to tears. For some, a strong and unexpected reaction. These mothers are brave; it is no small thing what they do. It takes guts, but also inspires awe and reverence. Do they know how brave they are? Possibly, but they would tell you that their courage pales in comparison to the bravery being asked of one small child.
He could be any of theirs, this darling boy with liquid brown eyes and a smile to melt a mother’s heart, who likes snow and ice cream and Dr. Pepper, this typical second-grader who loves his family and his dogs and his pet hamster. A vibrant, happy kid who wants nothing more than to play with his friends–and the chance to grow up. This boy, he is all of theirs.
With a hairdresser for each, the shearing commences simultaneously. Razors are set to scalps. Quick, deft strokes reveal rows of bared skin. Whoops rise up from the house as sheaths of hair fall to the floor and ponytails are severed like dismembered limbs. The impact is powerful. Tears run, unheeded now, down faces, falling to the floor with the locks of hair. This has become far more than a benefit. It is a sacrament. The degrees of separation between neighbors and friends and acquaintances, even strangers, merge and blend until no division exists and all are encompassed by a tangible sense of belonging.
Newly shorn, the women huddle, arm-in-arm. Exhilarated by the fulfillment of their conquest, they laugh through their tears. In disbelief they can’t resist reaching out to rub each other’s heads, now lightened, the weight of all their hair, gone. And the translucent image of Aiden and his parents is cast across the stage, over all of them, and reflected back to those watching. Lighter than air, love lifts the heaviest of burdens and illuminates the soul. Stripped down, love bares the beautiful, naked truth: no one is ever alone.
I saw a blurb about this project on January 1, 2014. Gratitude is pretty trendy right now, but when fully experienced, it can’t be denied that miraculous transformations are possible. In early 2008 Hailey Bartholomew, a photographer and film-maker, a wife and mother of two from Australia, embarked on a year-long commitment of taking one Polaroid a day, its subject something she felt grateful for. It began as a visual journal, intended to fight the depression she was feeling, but the impact on her life turned out to be far more significant than she could have imagined.
“The discipline of having to look for the good things that happened every day changed her life in so many ways. Hailey found not only her marriage, spiritual life and health improved, but this project accidentally, wondrously spread and affected the lives of many others.” Check it out here.
2014 feels like a big year, for me and for a lot of people I love. We’re on the verge of big transitions and living in a whole new way. When I saw this project, I thought, “Why NOT? I can do this. If I start today, in one year I’ll have 365 photos that not only chronicle the abundance I enjoy daily, but hone in on what’s really important, giving me a powerful collage to frame my perspective. While my photography is certainly amateur, the value is in the process and I envision my focus shifting as the days and weeks go by; seeing things in a new light, or maybe seeing things I never noticed before. Thank you for allowing me to share it with you; yet another thing to be grateful for.
So, one picture a day from my phone; the sacredness of the ordinary. For a whole year. Let’s see what happens.
Giving thanks for abundance is greater than abundance itself. ~ Rumi
I love Thanksgiving. It’s Christmas without the endless to-do list. Don’t get me wrong, I’m all about the tree-decorating, light-hanging, mall-shopping, card-sending, present-wrapping, stocking-stuffing frenzy, it’s just I’m usually in a coma by the time the work is done. Visions of sugarplums dancing in my head are often overwhelmed by exhaustion. But, gathering for one day with family and friends, pausing the frenetic doing to simply give thanks for our cornucopia of blessings? Nothing could be better.
I grew up in the Mormon Church. Sunday mornings found my family sitting on long wooden pews in the midst of a large congregation. My favorite part of church by far was the music. Raised by musicians, I’ve been singing since I could talk. From an early age lifting my voice in a joyful noise has been a wholly (holy), transformative experience.
Although I no longer subscribe to the religion of my youth, the songs from childhood still sing to me. Hymns in 4/4 time evoke the visceral memory of breathing in the Old Spice emanating from my father’s freshly-shaven jaw, his neck encircled by a white collared shirt and tie. No matter the season he wore a full suit. I’d lean my head against his strong shoulder, the fabric rough on my cheek, his solidity my fortress. In that place, I was rooted. A lifetime later, the melodies trigger deeply embedded emotions, both poignant and comforting.
Thankful for one more day
One hymn in particular plays in my mind this time of year. A rousing favorite, written at the turn of the century, Count Your Blessings is a lively tune that bounces along with words of advice to rival any ‘keep-your-chin-up’ Disney song sung by cute little animals. The message is emphasized by a dramatic ritardando (slowing) and fermata (hold) at the end: “name them one . . by . . one . . .” And brought home with a snappy happily ever after: “count your many blessings see what God hath done.” The simple but profound truth rings clear–hope is possible, even in the darkest of times, through gratitude.
The world is in pain. People are suffering on levels I have never known and most likely, never will. War rages the globe over. Innocents are killed, cities destroyed. Despair is rampant. Homelessness, poverty and domestic violence crush the human spirit. In my comparatively safe and prosperous life, lamenting hardships feels selfish and insensitive. Yet, adversity is a human experience, no matter our circumstance.
Hope is possible through gratitude
Viktor Frankl, author of Man’s Search for Meaning, said, “… a man’s suffering is similar to the behavior of gas. If a certain quantity of gas is pumped into an empty chamber, it will fill the chamber completely and evenly, no matter how big the chamber. Thus suffering completely fills the human soul and conscious mind, no matter whether the suffering is great or little. Therefore the “size” of human suffering is absolutely relative.”
It’s been four months since my mother died. I’ve been told the all firsts are difficult and that this Thanksgiving might be particularly hard for me. Mom didn’t have an easy life and towards the end of her 71 years, she experienced more pain than joy, more loss than fulfillment. But she taught me that being free of suffering isn’t the point. Life is a journey of contrasts: heartaches and frustration, contentment and bliss, and to be human is to feelall of it.
Viktor Frankl also said, “The meaning of life is to give life meaning.” Even as we suffer, finding what is good and right and redeeming – that is our salvation. Shining a light on our blessings warms the cold night and illuminates the dark.
To be human is to feel all of it
My mom started a family tradition around the Thanksgiving table. Holding hands, each person takes a turn to name what they’re grateful for. Both light-hearted and poignant, through laughter and tears, our abundance becomes brilliantly clear with each link in the chain.
Today, I count my blessings out loud. I hold hands with all the world and take my turn.
I’m thankful for the aroma of coffee that greets me, just roused from sleep. For the radiance of the full moon in a dark sky at 5:00 am, the world utterly still and hushed. For the clean bite of cold air drawn into my lungs and the vapor as I breathe out.
I’m thankful for my hands; their age spots, like a tree’s rings telling the story of years spent holding and touching. For feet that carry me, moving ever forward. For the rush of endorphins surging through my bloodstream during exercise, my heart a steady drum, beating the never-ending rhythm: I’m alive, I’m alive, I’m alive.
I count my blessings out loud
I’m thankful for my mind, my intellect, and the ability to reason. For my sense of humor and the personality that’s uniquely me. And for maturity and evolution, that I’ve traveled the roads bringing me where I am today.
I’m thankful for money enough to pay my bills. For water and electricity, for heat in the winter and air conditioning in the summer, for appliances and furniture and clothes. For insurance and medical care and pharmaceuticals. For technology that makes life easier and more fun. For reliable transportation that won’t leave me stranded. For a full tank of gas.
I’m thankful for connections that reach across distances: a Facebook message from my son, a sweet text from my daughter, a phone call from my best friend far away. For the love of my parents and brothers and sisters spread all over the country. For plane tickets. For cheesy peas and cinnamon rolls made from my mother’s recipes. For tradition.
I’m thankful for the million things money can’t buy, for a mother who loved me ferociously and without restraint, who remains a part of me I cannot separate, and whose lilting voice I hear in my head.
The meaning of life: to give life meaning
For my mother-in-law, gone two years now, and the memories of her unconditional love and acceptance that live on. For my grandson and his new brother coming very soon. For daughters-in-law and gay marriage. For divine love in the universe that I believe will prevail over conflict. Because it must.
I’m thankful for the companionship of my husband, the sudden belly laughs he provokes, and his arms that wrap me up, a fortress. For the sweet sound of my children’s voices, singing loudly from the back seat as I angle the rear-view mirror to glimpse their faces. For their clingy bed-time hugs as I tuck them in. For the words, “I love you, Mama.”
I’m thankful for the glorious sun as I turn my face up, eyes closed, to catch its rays. For our home–the place we go out from and come back to–for the sustenance we find in that shelter, our needs met and nourished. For a meal waiting at the end of a long day, for the contentment of belonging to each other.
Love will prevail over conflict
I’m thankful for my pillow and the bed that cradles my body, formed by the years I’ve slept there, my husband by my side. For the warmth of his calf as my heat-seeking foot finds him. For his arm that instinctively draws me close.
As I go to sleep, I’m thankful for one more day to draw breath.
In the cafetorium, I watched her audition as she executed the moves and called out the words just liked we’d practiced. She was a bit timid, her eyes sliding to the other girls, following their moves with a slight delay. But she did it! Trying out was all I expected; the outcome didn’t matter. It was the experience of taking a risk and working with a team that counted. I was delighted by her enthusiasm and incredibly proud of her courage. But it didn’t end there; while she didn’t meet the technical requirements, the coach still offered her a spot — as an honorary cheerleader. She was thrilled.
I filled out the paperwork, entered the practice schedule on my calendar and wrote the checks. I didn’t mind forking over $100 plus for gear — frankly, I would have paid whatever it took — but we ran into problems when ordering Sydney’s uniform. Communication, timing and various circumstances combined for an unfortunate result: There would be no team uniform for Sydney. It was suggested she could cheer in shorts and a school T-shirt.
I said no. How could I do that to her? Wearing a uniform is the mark of belonging. I couldn’t put her in front of the whole school in completely different attire. It would defeat the purpose of having her on the team.
My heart sank. She would be so disappointed.
The song “One of These Things” has been on Sesame Street from 1969 through today. The catchy and familiar tune — I’ll bet you’re singing it in your head right now — innocently illustrates the qualification and grouping of objects, teaching a basic lesson in sorting. I’m certain it wasn’t intended to represent the segregation or alienation of people because nowhere is diversity celebrated more than on this endearing and enduring television show where monsters and humans of all colors and sizes populate the community, and kids with special needs are a regular part of the mix. Inclusion was in their script long before it was in the vernacular.
However, I can’t help hearing those lyrics in the context of my daughter when certain situations arise, situations in which it seems painfully obvious she just doesn’t belong. Maybe my sensitivity is heightened because of the perception that disability equals different, and different isn’t always desirable, particularly in junior high school.
Maybe it’s because she’s smart enough to know she’s different, but doesn’t quite know what to do with that knowledge. Most people — kids and grown-ups alike — want to be included. We all have a basic human need to belong. And my budding young woman of a daughter, wanting to fit in, is all too often seen as a crab among starfish. The fact is, much about her is the same as her typically developing peers; her body is changing rapidly, her hormones are in full swing, she’s tired and moody and a little rebellious, she succumbs to academic stress and social anxiety. It’s a confusing time for any kid, let alone a teen who is intellectually challenged. Expecting her to recognize and articulate her feelings is too much pressure. It’s unfair.
“I don’t want to become a woman, Mom,” she says to me, trying to untangle her bra straps. “And I don’t like zits.”
On another day she says, “I’m too big for that car seat,” and climbs over her younger sister’s booster and into the back seat of the van, where she slumps down after buckling herself in. “Can you please turn it up?” she asks, singing along with Zendaya on Radio Disney.
Sydney has been in a tug-of-war with herself the last few years: She wants to grow up, she doesn’t want to grow up. She wants to be independent, she wants to be taken care of. Back and forth. Her internal struggle manifests frequently enough that when my cell phone rings during week days, I brace myself for the probability that it’s the school. “What now?” I think wearily as I catch the call before it goes to voicemail. Attention-seeking behaviors, non-compliance, minor defiance are the usual issues, but recently, Sydney had a pretty big meltdown; uncharacteristic of her and with no observable trigger.
I wasn’t surprised she couldn’t tell us why, but I didn’t doubt for a moment it was no random explosion. While we scratched our heads and wondered what could have caused such an outburst, it really wasn’t that hard to see. On top of her normal adolescent travails, her world was rocked by the loss of MeMe, her beloved grandma who died of cancer mere weeks earlier. Though she can’t grasp the permanence of death, she senses the pain of separation and feels the void absence has left. She worries people will go away and never come back. At a tipping point, Sydney found herself completely overwhelmed emotionally and, unable to cope with it, she lost control. I can’t say I haven’t done the same.
Good people go into education; good people who care and want to make a difference in kids’ lives. Special educators are extra-good folks. Coming from a family of teachers — my sister, my brother, my mother and my aunt taught high school special education, and my grandmother started her career in a one-room schoolhouse — I’ve seen firsthand the impact they can make. I’ve also seen the frustration of good people limited by flawed administration and bound by a convergence of circumstances; budget restrictions or staff shortages or conflicting methodologies. And I’ve seen a handful of people, definitely a minority, who should consider another line of work.
What parent doesn’t want his or her children to have positive experiences in school? To be responsible? To do their best while exploring their talents and abilities? And likewise, who doesn’t hope for excellence in her children’s educational opportunities? We want nothing less for Sydney, but it doesn’t come easy. We have to work for it. That’s our job.
Steven and I learned to navigate the system. We’ve learned about her rights and about Wright’s Law. We’ve learned the alphabet of acronyms: IDEA, Individuals with Disabilities Education Act; FAPE, Free Appropriate Public Education; LRE, Least Restrictive Environment; and IEP, Individualized Education Plan. We’ve learned to do our research and work with her support team, determining how best to serve Sydney and meet her needs. We’ve learned that buzzwords about trending educational models for interaction between children with special needs and their non-disabled peers — words like “mainstreaming” and “integration” and “inclusion” — are often just so much rhetoric, and that giving kids the tools to traverse the world with confidence is less about bureaucracy and more about those individuals who set a course for the stars and teach their students to go after their dreams.
We’ve learned that sometimes things go smoothly, even brilliantly. And sometimes … they don’t. We’ve learned that when it comes to advocating for our kid, we can get a little worked up, but after all, she’s our kid. From the start, Sydney’s dad and I made the decision to open up a world of possibilities to her, regardless of diagnosis and despite what limits others might see when they see Down syndrome instead of a child. We decided to empower her to embrace as much as she could, becoming whatever she could, without pre-determining what she would and wouldn’t be able to do. A large part of that commitment requires guiding her through a minefield of her own making as she learns how to behave, how to cope, how to grow up. It means sticking by her and championing her true potential, even when she slips, and even when the world sees the apparent differences and not the beautiful sameness.
After her incident, she wrote in an apology letter: “I’m definitly trying to do my best . . . . I’m so sorry for the way I overeacted. A little bit. Well a lot. I’ve never did this before. And I’m terrbley sorry.” She signed at the bottom, “Love: Sydney Kay Kent.”
I read the words she’d penciled on white lined paper in her childish but legible handwriting, some scribbled out and others inserted and thought, “Oh, baby girl, I’m the one who’s sorry. I’m sorry for seeing you, if only briefly, as ‘not like the others.’ I’m sorry for losing sight of who you really are and what you are capable of.”
With renewed focus, I went home on a mission. My girl was not going to cheer in shorts, but neither was she going to miss the opportunity to participate with her peers in this classic social ritual. There had to be a way to duplicate the cheerleading uniform. I got online and searched through hundreds of styles, ruling out the closest matches because of the time required for custom orders. Finally I found a stock uniform that was comparable.
With expedited shipping, it got here before the first game. It isn’t identical, but with the same colors and a similar pattern it is close. She might not be just like the others, but she will fit in. She will belong.
Check out this savvy young woman, Megan Bomgaars, another cheerleader who happens to have Down syndrome. She has a spirited message for teachers: Don’t limit me.
Lisa Pullen Kent is a writer, yoga teacher, musician, and passionate lover of people. She writes on parenting, marriage and the sacredness of the ordinary in everyday life. Lisa splits her time between Columbia, Missouri, where she lives with her adult daughter who has Down syndrome and Steedman, Missouri, where she lives with her husband on their farm in the country.
