Category Archives: Growing Up

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

The Long Haul

Photo by Randee McClung

I’m washing up in a restroom at the Oklahoma City airport and for a moment I can’t place my location: hospital? hotel? restaurant? Elegant water faucets and gleaming granite countertops add to my sense of disorientation. I don’t even recognize my own hands. Looking down at the palms rubbing together, the lather foaming, I watch with detachment as water rinses the suds away to reveal age spots and scars. The shrieking of a turbine dryer cuts the air and I’m fascinated and horrified in equal measure by the effects of high-velocity air on crinkly, tissue-paper skin as it undulates against bird bones, exposing skeletal phalanges and large blue veins, tendons as taut as violin strings. These can’t be my hands.

But they are, as are the 50 years it took them to become this weathered. As is this face that looks back at me from the mirror, eyes reddened and tired, cheeks gaunt — succulent youthful flesh gone, hair a bit frizzy. I lean in closer and smooth my makeup. I reapply my lip-gloss and pat down a few errant curls.

“You’re a grandmother,” I think, scrutinizing my reflection.

Two weeks and two days ago my first grandchild was born; the son of my only son. Jeremy and his wife Carly live 7½ hours south of us. This is my second trip down. The first, an urgent drive prompted by the onset of labor was a magical drive through the night, alone with my thoughts. I wasn’t sure I’d make it, but, as it turned out, life threw the kids a few curve balls. From a long and difficult labor to an emergency C-section to a baby in the NICU, nothing went according to plan. They were thrust into an unforeseen reality both frightening and uncertain.

When it became clear the baby wasn’t going home any time soon, I stayed. It wasn’t even a choice; there was nowhere else I could be. My husband, Steven shouldered the domestic load, my colleagues covered at work, and my busy life went on without me.

After ten long days Ashton was diagnosed with a heart defect that required an immediate operation. I went home for a few days to regroup and came back for the surgery. This time, with Steven traveling on business, I took my daughters who still live at home, Sydney, 14, and Haley, 10, out of school and brought them along. On that momentous day, they sat with us in the waiting room. Headphones on, they munched on Cheez-Its and Slim Jims while I kept my hands busy knitting a baby blanket. Thoughts of the pediatric cardiothoracic surgeon operating on a tiny newborn’s heart the size of a walnut raced around my mind. I tried instead to concentrate on the prayers uttered by many to guide those skillful hands.

Time stretched then folded in on itself; surreal, interminable. Then suddenly, the gowned doctor was there and we exhaled in learning Ashton tolerated the delicate procedure beautifully. A full recovery was expected; the new family would be on their way home soon.

Heady with relief, celebratory even, we’ve come to the airport now to pick up my husband; his absence has been felt. With some logistical creativity — a bit of planes, trains and automobiles — we maneuver to get everyone where they need to be. And in the midst, our typical routine churns along demanding attention. A perpetual balancing act, it’s been the norm for a very long time. Making the choice to spread our children out over 18 years has resulted in a parenting marathon.

We have friends in the trenches of young parenthood; their lives filled with diapers, sleepless nights and temper tantrums. Friends running from soccer games to piano lessons, who help with homework and college applications. We meet them at orchestra concerts and cheer practice and neighborhood BBQs.

We have friends in empty nests; their children gone to college or moving away to embark on careers. Friends welcoming new members into their family as their kids get married and have babies of their own. We swap stories about in-laws, the cost of weddings, and the phenomena of boomerang kids.

We don’t, however, have many friends who’re in both, and who consequently experience what I call CPF: chronic parenting fatigue.

Our oldest, Melissa, was a senior in high school when we were pregnant with our youngest, a fact which repulsed her.

“Ew!” she said, “You’re going to be old parents.”

And she was right. We’re kind of old already and we’re not done yet. I often wonder what will be left of us when all the kids are gone? Who will we be by the time we get there? We are not the same people we once were, not the same couple. The idea that marriage is both strengthened by the challenges of family life and crushed under its weight seems a paradox, but it is profoundly true. Steven and I have never stopped loving one another, but this is not to say we always like each other. Stress and exhaustion make us irritable and sometimes we’re just not nice. Everyone else gets the best of us and all that remains for our beloved is the dregs: we are robbed of the person we love most.

Those are the times I miss my sweetheart. I miss the belly laughs his sharp wit never fails to provoke. I miss his pride in my accomplishments, his comfort when I’m melancholy. I miss the pleasure of his company; gourmet dinners and stimulating conversation. I miss the end of the day when our minds unwind and our bodies entangle; when we make space for each other’s innermost thoughts. I miss spontaneous weekend getaways and leisurely lovemaking. I miss his everyday kisses.

Without these things we’re great business partners, roommates and co-parents, but we aren’t the friends and lovers we started out being. Without this spark of intimacy, our day-to-day is reduced to an endless to-do list wearing us down. And out. As Garth sang, we’re “much too young to feel this damned old.” Stepping out of our responsibilities and indulging our love affair is the only way we’re going to see this through.

It’s beautiful to watch our son and daughter-in-law lean together when life necessitates they surrender control; when patience and the ability to set aside their own needs is called for. Faced with this daunting new role, I wonder if our son knows his parents grapple with the same demands and sometimes teeter on the edge themselves. I doubt he knows what’s ahead in the long haul, but I do know the richness will be far greater than he could ever imagine.

I hitch my purse to my shoulder and take one last look in the mirror.

“Not too bad for a grandma,” I surmise and turn to walk out.

Leaving the restroom my eyes cast forward down the long shiny corridor to the baggage claim where the kids have been waiting for Steven. And then I see him. I drink him in like water in the desert.

He bends over to hug Haley. Sydney throws herself over his back. Jeremy and Carly cluster around him. Everyone is talking at once and I walk toward them, unnoticed. My husband looks up over the top of Haley’s head and our eyes meet. I can’t help but smile as my feet lead me steadily to the arms I can feel around me before I get there. Weaving my way through the commotion, I come in closer and stand on my tiptoes.

“Hey, Granddad,” I whisper, brushing my lips against the 5-o’clock shadow on his jaw. “Let’s go see our baby.”

In that moment I love every chaotic, ecstatic, dynamic morsel that makes up our life and it is all wrapped up in this man, inextricably woven into our journey together. He’s my one and only. Eventually, we’ll make it to a tropical paradise or at least to St. Louis for a weekend, but for now, this is all I need.

 
 
 
 
 
 
 
 
 
 

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Filed under Aging, Babies, Childbirth, Grandparents, Gratitude, Growing Up, Marriage, Motherhood, Parenting

Just Like That

Melissa

Aaaaaaand just like that, Christmas is over.  The preparation, the anticipation, the actualization; come and gone for another year.  My beautiful live tree adorned in sparkling red and gold is dead, morphed into an endearing Dr. Suess caricature; its pliant needles turned brittle and sharp, its majestic branches drooping sadly, ornaments lowered to the floor in resignation.

But, I’m in no hurry to take it down, even if it is a 10’ fire hazard.  I want to sit with it a few more days, turn on the lights and gaze at all the pretty decorations in my house; pretty things that hold pretty memories.  The presents have been opened.  The food has been devoured.  The kids have gone home. But the lights can wait to be wound around plastic spools, the garland to be coiled into plastic tubs and the tree to be hauled out to decompose. I’m not quite ready to let go.

All our children were here this year – the ‘little girls’ who still live under our roof, and the ‘big kids,’ who grew up and left years ago. Melissa and Jeremy were 9 and 7 when I married Steven and we celebrated our first Christmas as a new family.  They were 14 and 12 when Sydney was born, her diagnosis of Down syndrome an unexpected turn of events, and 18 and 16 when Haley came along, her very presence an unexpected turn of events.  As older sibs, they were a huge help, stepping up to the responsibilities of dealing with their younger sisters’ special needs.

And just like that they’re 28 and 26, bringing their significant others home, growing our family and adding more people to love.  Melissa lives, with her partner, Jey, here in Columbia, For now.  She didn’t always, and one day she will spread her wings to fly far and wide. But that day has not yet come.  Jeremy recently landed in Oklahoma City with his wife, Carly; albeit temporarily.  The 450-mile stretch that separates us now is a much smaller distance than the 1300-mile span it used to be.  I’m hanging on to every day that they’re close by.

Because of it, we don’t often get Christmases together.  It’s been four years since the last so I wanted to make this a big one and the preparations started early.

“Are you sure you want to spend that much on a tree?” my husband asked, checking the price tag on a gorgeous Balsam Fir.  He craned his neck to look up, “I’m not sure it’ll even fit.”

“Honey, the kids are coming home,” I reminded him. “I want it to be special.”

Of course he gets it; he shares my inclination to go all out.  It’s the same drive that lead him to the roof for 12 hours in 30 degrees, hanging brand-new LED lights, clip by clip as he inched along the gutters and peaks, only once sliding to the edge and nearly plummeting to the ground (thank God for the satellite dish).  Tons of work, more than a little frustration, but the result was magical and breathtaking.

The tree went up in the corner of the living room; a few inches lopped off the top left just enough room for a delicate illuminated star.   Fragrant evergreen scent, full of promise, permeated the house,  We trimmed the tree while listening to Pandora’s “Traditional Holiday” station and took turns identifying the crooners; Bing Crosby, Perry Como, Nat King Cole, Dean Martin.  We shopped; at the mall and at our computers. We wrapped and wrapped and wrapped.  We got out the good dishes.  We baked and we cleaned.  We stayed up late and got up early, exhaustion crowding excitement, knowing it would be worth the effort.

And then they were here.  Melissa and Jey came from their little house downtown, and Jeremy and Carly drove seven hours on the interstate, stopping regularly because my daughter-in-law is 33 weeks pregnant.  Their first, a boy, will arrive shortly before their third anniversary.  And just like that, my boy will become a father.  7 lbs. 1 oz. at birth, he now towers over me and swallows me in bear hugs.  I can picture him holding his tiny infant son in those arms, just as I held him.

Our time together didn’t disappoint; it was full and rewarding.  We told stories.  We played games.  We ate and then ate some more.  We watched ‘Home Alone,’ 1 and 2, the kids reciting the classic line in unison – “Merry Christmas, ya filthy animal.”   And ‘Christmas Vacation’ with Chevy Chase, the hilarious spoof of stereotypical holiday foibles; both funny and touching as we recognize ourselves in Clark Griswold, a hard-working family man determined to create the perfect holiday for his clan.  We love him for his indomitable spirit in the face of mounting obstacles and catastrophic property damage, and for his vulnerability that reveals itself in the midst of calamity.  Locked in the freezing attic, he bundles up in a woman’s fur coat then stumbles across a box of old film reels.  Before we know it, he’s projecting black and white movies onto a sheet, frustration and mayhem forgotten.  The juxtaposition of a grown man lost in childhood memories, wearing his mother’s turban while a sentimental tear slips down his cheek captures the complexities precisely.

We also watched our own home movies.

“Mom, look. I found some old videos,” Jeremy yelled from the guest room, emerging with a crate of VHS cassettes, my handwriting on the labels: ‘Melissa and Jeremy 1988.’

“Let’s watch ‘em!”  He said with his typical enthusiasm.

We dimmed the lights and gathered around the big screen. I loaded the tape into a borrowed VCR.  It disappeared, sucked inside with a click.  The play button lit up, images sprang to life on the screen and just like that, it was 25 years earlier.

A three-year-old girl in pink sponge rollers eats tortilla chips out of the bag on a couch with her best friend.  She wears panties and nothing else, watching King Kong from 1976 with Jessica Lange.  She says to her baby brother blocking the TV, “Germ-y, get out-uh-our way!” leaning around him, intent on the images in front of her.

She sits on the floor of a horse stall in her grandpa’s barn.  A new litter of puppies was born in the hay and a squirming puppy licks her face as she holds it.  Giggling she says, “He likes me!”

A toddler in diapers sports a blond mullet, the back long and curly.  He wears top-siders with no socks.  In the sunshine he climbs into his Little Tikes car and walks his feet ala Fred Flinstone to make it go.  Hands on the wheel, he steers his yellow and red cozy coupe down the sidewalk and off the curb, lodging it against a parked car.  He cries in a bitty voice, “Mama, I stuck!”

He holds his hands out to catch a ball and it hits him in the face, bouncing off.  Exploding with laughter, he runs to chase it then heaves it back with all his might.  Not quite in control, he jumps up and down then trips over his own feet, yelling, “My turn!  My turn!”

A young woman in mom jeans, the waistband hiked up under her armpits, bends to speak in a loving voice to her babies.  She wears her hair like Dorothy Hamill with a perm.  She has clear eyes and a soft face; she is self-conscious and uncomfortable in her own skin.

Time bent.  I couldn’t get my bearings as I glanced from the wide screen TV to the kids watching themselves, and to their partners watching their loved ones as children.  They’re all laughing and taking delight in the obvious evidence of personalities, even early on.

Melissa was thoughtful and a little shy; content. Her easy-going nature radiated visibly and she smiled easily and often.  She was innocent and sweet and unassuming.  Her motto was, life is great—I’m happy to be here.  She was pure, authentic.

Jeremy couldn’t sit still or stay quiet; his exuberance was uncontainable.  He lived large and loud, grabbing on to every moment and demanding attention.  Whatever he felt, he expressed.  His motto was life is great—what’s next?  He was eager, energetic.

Then just like that, my daughter is putting herself through college, returning to school with purpose, pursuing an advanced degree in psychology.  She’s an honor student with scholarships and awards, a leader, a camp counselor, a nanny, possessing rare qualities for working with children and teenagers.  Babies love her, children flock to her and adolescents confide in her.  She’s smart, caring and making a difference in the world.  She is pure and authentic.

And just like that, my son is saving lives in his profession as a paramedic.  He responds to people’s worst nightmares; accidents and overdoses and violence, guiding them through crises, ministering to body, but also to mind and spirit.  His medical skills combined with his compassion make him a calm force and a steady presence.  He’s a husband and provider and soon to be a parent.  He’s smart, caring and making a difference in the world; he is eager and energetic.

This is how I know it to be: life flies past in a moment.  And still, I take it for granted. Still, I assume there will be 25 more years until the realization hits; we don’t know what lies in the days ahead.  Just like that things do change.  And I am brought up short.  I’m in awe of the gift of my family.  My family, here, now, together.

We posed in front of the giant tree, me in the middle, surrounded by the ones I love the most:  Jeremy with his arm around his wife, Carly holding her beautiful belly and within it, our grandson; Melissa seated in front of her girlfriend, Jey, whose hands were placed gently on her shoulders; the little girls at our feet in their Christmas pjs, and Steven, my partner, my love, standing ever-present behind me.

Just like that it’s 2014.  I can’t stop or even slow down time, but I can hold on loosely—I’m not letting go.  I can take it all in and savor it and relish it.  And I guess I can go ahead and take the tree down.

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Filed under Adolescence, Aging, Babies, Childbirth, Christmas, Down syndrome, Family, Growing Up, Letting Go, Loss, Memories, Motherhood, Parenting, Siblings, Special Needs

Name Them One By One

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 feel all 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.

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Filed under Enlightenment, Family, Gratitude, Growing Up, Marriage, Motherhood, Thanksgiving

Square Peg

photoSydney tried out for the cheerleading squad.

“Let’s get a little bit rowdy, R-O-W-D-Y!”

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.

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Holding Space

Brother and sister,

together as friends,

Ready to face

whatever life sends.

Joy and laughter

or tears and strife.

Holding hands tightly

as we dance through life.

Suzie Huitt

Flying over New Mexico on my way to Phoenix, I peer through the airplane’s small window, taking in the vastness of the red rocks below. I’m going home to the desert. To the funeral of my brother’s son.

People in my life keep leaving. They move away or change. Or die. Sometimes they stop answering my calls. Abruptly, they’re just gone. I don’t know why this keeps taking me by surprise or why the blow to my heart doesn’t diminish with its recurrence. I’ve been collecting losses and abandonment along my path like souvenirs on a trip.  

I can’t seem to find my way through the loss. Pain, heavy and suffocating, has set up residence in my chest. Not long ago, one sister lost her husband to cancer. Around the same time, a close friend died from suicide. My heart–the organ that pumps my blood and the seat of my emotions–hurts from so much grief. And now, this precious boy, not yet 21, is gone. He was only eight years old the last time I saw my nephew. Maybe it was I who abandoned him.

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Kids Can Change the World or Lisa Goes to Science Camp

Screen Shot 2013-05-22 at 10.37.58 PM 3

We don’t even have to try,

It’s always a good time.

Owl City—Good Time

My memories of 7th grade provoke a visceral response.  Awkward and insecure, I sought acceptance through conformity, applying baby blue crème eye shadow thickly from a lipstick tube, battling my naturally curly hair into something resembling Farrah Fawcett’s, and walking the halls with fake nonchalance, clutching my Partridge Family Trapper Keeper to my chest.  None of it worked. I was unpopular and self-conscious. I think it was actually the worst year of my life. So recently, when the necessity arose to attend 7th grade science camp with Sydney, my thought was, “I wonder if there’s somewhere I can get alcohol within walking distance.” 

I went, not as a chaperone, but as 1:1 support for my special needs daughter; the school could not provide a 24-hour para for an extracurricular activity. If I didn’t go, she couldn’t go. Short of swapping bodies with my 13-year-old daughter, ala Freaky Friday, I lived the life of an early adolescent for three days.

“Are you excited, Syd?!” I asked, as if she hadn’t been telling everyone who’d listen.  Excited was probably not the word I’d use to describe my state of mind, but I steeled myself and climbed aboard the big yellow school bus packed with chattering, giggling girls, their cumulative noise already bouncing off the tin walls of the chassis.  Sydney and I squeezed past arms and legs spilling into the aisle until we reached an empty seat.  “Whoa, It’s hot in here,” I thought, as I clicked my window down, notch by notch.  I wrestled my bag into the seat on the wheel well and anticipated the 90 minute ride ahead. Talking to myself, I said, “You can do this–it’ll be good for the kids,” and with one look at Sydney, I knew there wasn’t a choice.  “Mom, take a picture of us and post it on Facebook,” she said, posing with her friends.

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Leap From the Nest

mama swan

Where are you going, my little one, little one,

Where are you going, my baby, my own?

Turn around and you’re two, turn around and you’re four,

Turn around and you’re a young girl going out of my door.

Turn Around by Malvina Reynolds and Alan Greene

Autumn is my favorite time of year and there’s nowhere the season is more provincial than in the Midwest.  A tangible chill in the morning air softens the heat of summer and signals a coming change.  Seemingly overnight, leaves begin to turn.  Variegated branches hint of color that will soon become rich orange, yellow and red, flaming briefly before falling to the ground and creating nature’s perfect playground for jumping children.  The farmer’s market yields a spread of eggplant, pumpkin, corn, squash and apples; not only a visual feast, but a culinary mother lode for comfort foods that fill the house with the tantalizing aromas of savory soups, roasted vegetables, freshly baked bread, and apple pie. Thrushes, sparrows and other song birds nest mid-migration, on their way to warmer climates. The days shorten and the pull of the Earth’s orbit around the sun is felt.  My own focus gravitates homeward; summer is over.  It’s time to go back to school.

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It’s About the Dance

dancing-in-the-sun

To watch us dance is to hear our heart speak ~ Hopi Tribal Saying

My daughter Sydney is turning 13.  Thirteen.  As in teen-ager.  When she was born with Down syndrome, we couldn’t have known that watching this beautiful creature grow from infancy to adolescence would be astonishing, but considering that ten years ago we nearly lost her to pneumonia, it becomes positively miraculous.  She would have remained forever a cherubic 2½ year old, arrested in toddlerhood, innocent and ­­unchanged.  It causes my chest to constrict painfully when I remember the weeks she spent in the Pediatric Intensive Care Unit, when I realize how close she came to dying.  But, to our great relief, she didn’t.  She stayed with us.  And she’s no longer a baby.  Through preschool and potty-training, through primary school and pre-pubescence, my long-legged, lanky daughter, emerged, poised on the cusp of puberty.  Ready or not, world, here she comes.

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Oh, the Places She’ll Go

 Congratulations!

Today is your day.

You’re off to Great Places!

You’re off and away!

Dr. Seuss

By the time Sydney was born I knew firsthand how quickly babies grow up. The journey away from their mothers and towards their own becoming begins with the first breath. I knew that my job as a mother was to guard my children’s safety while guiding them to autonomy; to teach them self-reliance and then . . .  let them go. Never again could I protect her as much as when I carried her within my body, umbilical cord intact. I knew my little one with Down syndrome would need extra protection; what I did not know was that she would need independence and self-assurance just as much. And she’d need me to teach her, then stand back and let her thrive.

I’ll never forget the first time I lost Sydney. One moment she was standing by my side, the next she was gone. Vanished. Panic doesn’t begin to describe the altered-state of vertigo a mother feels on losing sight of her toddler. I felt I wouldn’t breathe again until I found her.

Wandering is a common behavior for children with Down syndrome — I read that early on somewhere in the considerable pile of literature we’d amassed. But, I didn’t get it until it started happening though I definitely wouldn’t call what Sydney did wandering.  wan-der v. to go aimlessly, indirectly, or casually; meander. There was nothing aimless or casual about her meanderings; they were purposeful and confident.  e-lope v. to leave without permission or notification.  run away v. to depart quickly; take to flight; flee or escape. These are more accurate words to describe my daughter’s exploits, occurring with what came to be exasperating frequency.

She’s an escape artist

She was about 2 ½ when she mastered the art of a stealthy escape. Watching for an opening when my attention was diverted, she’d make her getaway, leaving me turning in circles, frantically, uttering “Where’s Sydney?” repeatedly. I lost her in the grocery store, in the mall among the clothes racks, in Walmart with its endless aisles. I lost her outdoors in crowds, at schools, at parks, at festivals and events. I lost her at parties. I’d find her off in someone’s master bedroom digging through their drawers (she even climbed in someone’s bed once), or getting into a cupboard in their laundry room.  Upon entering a new environment, my first priority was to secure the perimeter.

I even lost her at home. One spring Saturday when Sydney was nearly 4 and I was pregnant with her sister, Haley, the whole family busied themselves with preparations to sell our house and move. My husband, Steven was in our vast backyard, tending to an acre of walnut trees and gardens. Inside, boxes in various stages of packing lined the walls.The open doors let the cool air circulate; our high-schoolers, Melissa and Jeremy ran in and out.

I thought Steven had Sydney with him as he worked in the backyard, so when he came in the house alone, I said, “Where’s Sydney?”

“I don’t know,” he shrugged. “I thought you had her.”

I couldn’t breathe until I found her

My stomach dropped. “I don’t have her. I thought YOU had her!” I shot back at him.

A cursory search of the yard yielded no trace of her and with increasing urgency we spread the search in an ever-widening circle. I turned back to the house thinking maybe she’d snuck inside. I combed every room, closet, nook, under beds, calling her name.

Twenty minutes went by, a veritable lifetime. We called the local police and sent the kids and their friends in all directions to look. My perception of time warped and stalled out. It seemed interminable, yet I willed it to stop.  “Just WAIT!” I though, “until I find my child, safe and sound. Then the world can resume.”

I tried to shake the images that flooded my mind, but my gut churned, my heart raced and my throat locked down. I started hyperventilating as my fear overwhelmed reason.  Steven tried to calm me down; the likelihood of kidnapping was low in our small town, traffic was light — and slow ,and she couldn’t have gotten as far as the railroad tracks yet.  But anxiety crowded the edges of his composure, too.

After thirty minutes, I heard Melissa yell from the next-door neighbor’s house just 20 yards away the words I’d been desperate to hear for a half hour.

“I found her!”

Though relief flooded my system, the chemicals in my bloodstream shifted and nausea threatened. I quickly recovered and ran towards Melissa, calling as I went, “Where was she?”

“She was in the neighbor’s house.”

In small towns, people don’t always lock their doors and Sydney had headed across the road, up the back stairs and let herself in. While everyone was out looking, including the police chief, she was at our friends’ house, having a fine time by herself.

Her disappearing act continued, but once she discovered the enormous amount of attention her antics garnered, the ante was upped and she started bolting. Instead of surreptitiously gliding away, she’d make a quick break for it. She was smart and fast! For a child who’s cognitively impaired, she was nothing short of cunning. Despite having hypotonia (low muscle tone), she ran far enough and fast enough to evade capture unless a significant chase ensued. And so the game was on.

Laughing hysterically, hair flying in the wind, little legs pumping like pistons, and completely oblivious to danger, she looked over her shoulder to be sure we were pursuing. The more we followed, the faster she ran. The more she ran and we followed, the more the behavior was reinforced. And we didn’t have a choice; we couldn’t not run after her.

If I, her mother, couldn’t keep tabs on run-away bunny, how was I to send her out in the world and trust anyone else? She started school at only 3. The early childhood special education program, held in a local church, featured a playground in the back parking lot—with no fence. We warned, “She’s a flight risk. You’ve got to watch her constantly.” Within the first week, I got a phone call from a neighbor telling me Sydney had been found walking along the highway. The school didn’t even know she was missing. She has eluded watchful eyes at every school since, taking side trips down hallways, foraying into other classrooms and even out into the woods once during recess.

She managed to get away from babysitters during the rehearsal dinner for my sister’s wedding. Already uneasy to leave her, we cautioned the couple in charge–adults, a mom and dad themselves: “You have to watch her really closely.  She’s is an escape artist.” Sure enough, Sydney slipped out the side door of the guest house where we were staying, crossed the street, and through the grand entry into the hotel. No one saw her go and she wasn’t missed until one of the kids pointed out that she was gone.

We installed locks, gates and alarms but she continued to foil her captors. We ultimately used a harness and a leash in exceptionally risky situations. It was the only way I knew she was safe—if she was physically tied to me.

She needed me to let her thrive

The umbilical cord re-instated, my protective instincts were finally satisfied. As the terrifying challenge of holding onto her became our way of life, a pattern was formed: a habitual and unconscious sense of control I attempted to exert over the environment and my child’s relationship to it. I became so accustomed to reining her in and holding her close because of my own fear that I forgot to notice when she no longer needed it.

I never want my children to suffer and the desire to shield them from pain is as strong as my love for them is deep. But, I’ve had to ask myself when does sheltering my growing babies from life experiences no longer serve them in the journey they’ve undertaken? When does buffering the natural consequences of their own choices become detrimental to the instinctive objective they were born to; that of growing away from me? Wasn’t that the whole idea of having them in the first place?

Raising children means making the beautiful progression from the umbilical cord that sustains, to the leash that restrains, to the invisible tether that remains, connecting child to mother wherever they go in the world. Every day I take a deep breath and let go. Again. Then I  send them out into the world, into their world. They go because they feel the safety—it’s in the tether—and it can stretch as far as it needs to without breaking.

“Are you watching me, Mom?”

When Haley gets on the bus heading a mile away to elementary school—she presses her face to the window and blows me kisses. When Melissa gets in her car and drives hundreds of miles to her summer job in Colorado—she looks back in her rear-view mirror and waves. And when Jeremy walks down the jetway and boards a plane to Chile—he turns back to see if I’m still there.

“Are you watching me, Mom?” each one asks.

You bet I’m watching.

Sydney’s almost a teenager and has pretty much outgrown this phase of running off.  She frequently declines to even hold my hand as we’re walking through a parking lot.  The other day I went to pick her up early from middle school and as I waited I noticed a kid, alone, at the end of the long hallway. As this lone figure advanced and came into focus, I saw it was my daughter, walking down the hall, unaccompanied, with confidence in her stride, toting a backpack as big as herself and wearing a smile that said, “I’m ready.  Let’s go!”

You have brains in your head.

You have feet in your shoes.

You can steer yourself

Any direction you choose.

You’re on your own.

And you know what you know.

And YOU are the guy who’ll decide where to go.

Dr. Suess

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