Tag Archives: growing up

Elastigirl

Elastigirl

The interesting thing about being a mother is that everyone wants pets, but no one but me cleans the kitty litter.

– Meryl Streep

Haley is playing Jingle Bells on the piano.  It’s been less than a week since the girls schlepped their backpacks home stuffed with months of worksheets, book reports quizzes, science projects, a clay pinch-pot (penny holder? soap dish?), and a smashed cupcake from the last-day-of-school party.  There are no buses to catch this morning and at 8:00 a.m. they’re still in pj’s.  Sydney sits eating at the breakfast table, but her steady, methodical routine is disrupted by the percussive volume coming from the front room.

“Haley!”  I yell, “It’s June, for heaven’s sake.  Play something else.” Sending the piano stool spinning, she jumps off and comes sliding into the kitchen.

“I’ve got the Power!” she sings loudly, growling the word power and adding a kick and a punch for emphasis.

Dancing around and under my feet as I move from fridge to sink to coffee pot, she belts, “I’ve got the Power!  I’ve got the Power!  I’ve got the Power!  I’ve got the POWER!”

Ha-ley.  You’re annoying me.”  Sydney says quietly.  “Your .  .  .  singing.  You are, you are giving me .  .  .   a headache.”

“I’ve got the Power!  I’ve got the Power! I’ve got the Pow-ow-ow-ow-er!”  Haley scoots undeterred out of the room.  Sydney sighs, placing her palm on her forehead.

In preparation for summer fun with my girls, I cut back my hours at work.  My fantasies consisted of less routine and more freedom, less busy-ness and more togetherness, less time spent working and a whole lot more spent playing.  But that was before summer actually started.  I should know better by now.

Because, truth be told, I am a psychotic mommy; a June Cleaver meets Joan Crawford version of Dr. Jekyll and Mr. Hyde.  The fact that only my children are capable of triggering this instantaneous shape-shifting is oddly comforting and disturbing at the same time.

My youngest, in particular, with her brilliant mind and astounding zest for life, pushes my buttons, and is (coincidentally?), like me; multi-dimensional. Living with ADHD, she is challenged by impulsivity, inattention and hyperactivity. While Sydney needs time to process, room for flexibility and a slower pace, her sister needs constant stimulation, a high level of structure and detailed feedback.

Being with Haley is like living inside a pinball machine; a jarring barrage of sounds, words and thoughts.  Continually absorbing her environment, what she takes in, she remembers forever after.  When she was 5 she said, “I have a camera in my head,” a perfect way to describe her photographic memory. Her brain fires rapidly and her mouth interpolates a running narrative.

“How do you make your own fossil?”

“Is wood a plant?”

“Why do we say 9 ‘oh’ 4 instead of 9 ‘zero’ 4?”

“Who answers the questions that scientists can’t answer.”

Incessant talking, questioning, exploring and exclaiming; Haley is compressed energy.

Sydney tries to interject between the words, but it takes her longer to get her sentences out, “Um, Mom? Mom? Um, am I going to Camp Barnabas on June 17th?”

“Yes,” I answer for the 700th time, “you are.”

Sydney is needy for attention because her sister commands it all.

“Haley!  Stop!  Mom, I didn’t get to talk.  She’s talking across me.”

Managing the lives of not one, but two, children with special needs—diametrically opposing needs—has made me the crazy mom I am today.

But, I vow this summer will be different.   This summer I don’t want to get angry and turn green, ripping my clothing to shreds.  I need a plan.  When I’m putting away freshly folded laundry and I find mildewing towels on the bathroom floor piled on top of inside-out clothes, globs of toothpaste on the counter, and a specimen floating in an un-flushed toilet bowl and I feel a familiar chemical reaction, an adrenaline surge through my body, I need to Breeeeeeeathe.  I need to Stay. In. Control.

And, how can I make it different?  That is the million-dollar question.  Being with my kids 24/7 reminds me that there is only one time they drive me nuts, and that’s when I’m with them 24/7.

One strategy is to keep moving.  We are booked day after day and frequently into the nights.  My Google calendar is colorful with appointments and events and practices and play dates.  I can’t stop or even slow, because, at that moment, sensing weakness, they will circle for the kill.  My mind repeats, ‘just keep moving, just keep moving.’

Yesterday we made it to swim practice (almost on time), picked up milk, dish soap and a birthday present at the store, had a friend over to play and went to the library.  I managed to get dressed, but I think I may have forgotten to brush my teeth.

Realistically, I can’t keep up that pace and honestly, I don’t want to.  I crave down-time and I will get it, even if it’s forced on me by exhaustion.  They need down-time, too, so scheduling relaxation at the pool seems a perfect strategy.  The kids can swim and mommy can lie in the sun; it’s a win-win!  However, another mother has messed with my plans this year; Mother Nature.

It’s been a cold, rainy spring in Mid-Missouri but despite the temperatures and weather alerts for thunderstorms, floods, and even a tornado watch, swim team practice has been held.  The little troopers sit at the edge of the pool, shivering and hugging themselves; their lips blue, teeth chattering.  Yesterday the sun broke through the clouds for 5 glorious minutes, then, a crack of thunder, and down came the rain.  Again.

My last and best strategy is to simply let go.  Surrender.  Give in, but not give up. Flexibility is the mother’s F-word.  It feels like a relief to embrace that things won’t go as I’ve planned, and in fact, that’s not what I want anyhow.  There’s an elusive truth somewhere in the back of my mind—or heart—waiting to hand me the key to the best summer yet.   Like I said, I should know better by now and maybe I actually do.

As I renegotiate my expectations, time for myself mustn’t be excluded, because what I do know is this: ‘neglect my own needs repeatedly, mercilessly and I will crash and burn.’  Prioritizing time alone is worth any effort it takes and my spoiled princesses will learn that everything is not always about them; that their indulged desires need to be balanced with others’ needs.  And for me, space from my little darlings can be the difference between Super Mom or Mommy Dearest coming to stay; the difference between me surviving the summer or relishing it.  My house might not be clean, but I will be rested and happy and appreciating my children, who won’t ever be this young again.

“Mom, can I borrow your boxing wraps to make something?” Haley asks as I type an email.  Because of her tendency to rip through drawers and closets in search of some specific item, leaving destruction in her wake, she has been told and warned and threatened to ask before she commences digging.

“Okay,” I say, not looking up from my computer, “but only one pair.”

She starts to move, and I look at her over my reading glasses, “I will get them for you.”

Sheepishly, she says, “I already got them.”

She lifts her whole leg and sets her heel heavily on the coffee table, revealing a makeshift cast, my white wraps wound and Velcro-ed over her foot, around her ankle and all the way up to her knee.

“I broke my tibula and fibula.  Can you show me how to limp?”

Eventually, the sun has to come out, right?

Leave a Comment

Filed under ADHD, Down syndrome, Family, Letting Go, Motherhood, Parenting, Special Needs, Stress

Accouchement

My husband aIMG_1573nd I had dinner last week with another couple, friends of ours expecting their first child(ren), twins, and expecting them soon. As we joked about the wife’s swelling feet and widening girth, (and the good fortune that her husband is strong enough to hoist her off the couch), I notice beneath her overt anticipation of the blessed event(s), the covert exhaustion she was hiding. An unmasked expression crossed her pretty face, just for a moment. One that only a gestating woman in her last weeks would understand, one that said, “Please, God, let this be over. Right now.”

In sisterly solidarity I immediately flashed back to pregnancy, a state both magical and miserable, completely consuming; a transformative rite of passage. In the nanosecond it took to relive, the realization that I’d never actually be pregnant again descended on me with finality. I will never again grow a child inside my body and I’m not sure how I feel.

Coworkers, friends and family all seem to be doing it: multiplying and replenishing the earth. Pregnant women surround me, their ripening bodies nurturing the genesis of life where there was only potential. No matter that women have been giving birth since the dawn of time, each new miracle astounds me.

I won’t experience an unseen little stranger rolling underneath my rounded belly, pushing me from the inside (and in the case of my youngest, punching me), proclaiming their presence with every hiccup and jab to my ribs, staking claim to my heart long before their grand entrance. I won’t bring a brand new person into the world, someone who didn’t exist before, but without whom I’d be incomplete. That part of my life is over. Chapter closed.

It’s not about wanting another baby — twinges of longing for a tiny human, swaddled and sweet smelling have been replaced by relief over no more diapers or colic or projectile vomit. Plus, after a bit of waffling, the decision to be done was made after my third baby, though the fourth did not get the memo.

No, this is about discovering myself past childbearing age, about acknowledging my progression from maiden to mother to crone. What is this ambivalence, and why does it feel like loss? Possibly because fertility and youth are intertwined; I’m no longer fertile therefore no longer young? But perhaps it’s more about seeing the journey from birth to death as a one-way trip, and feeling time, like a strong gust of wind, pushing me forward.

The first time a child split me wide open, body and soul, I found purpose. Fragile, yet resilient, so new, yet so familiar, I held, in my arms, the answer to every question; the meaning of life itself. And each time I cupped a small rounded head and inhaled the intoxicating fragrance of newborn skin I was reborn. Changed. I simply do not know who I would have been had I not been a mother. The archetype has imprinted my identity so as to affect all other relationships; all paths taken and not taken.

Bearing evidence of birthing and breastfeeding four babies, my body has lost the elasticity to reshape itself. My psyche still grapples with maintaining a separate sense of self while giving my children my whole self, an inescapable urge. But, though I may disparage my life or wish briefly for something different, I know I wouldn’t trade the sacrifices made for the indulgences gained.

At 31, a divorced mom of two school-aged children, I remarried with hopes of a second chance at the happy family I’d always wanted. I dreamt of more babies to cradle. After a miscarriage, at 36, I gave birth to a beautiful baby girl with thick red hair, milky white skin, and Trisomy 21, Down syndrome. The initial shock of her diagnosis was surprisingly short-lived. Bringing gifts, her presence was cause for celebration. She taught me to slow down, breathe, and stop long enough to find stillness. She taught me the richness of a simple life. She taught me contentment. And her younger sister, despite the 99.9 percent effectiveness of birth control, was born when I turned 40. She teaches me… patience.

Mothering is nothing if not an exploit of extremes, and for every Hallmark moment there are 200 ‘Suck it up, you’re the Mom!’ moments. Like being eight months pregnant and worried sick over an absent teenager, hours past curfew, before cell phones. Like weeks of hospitalization with a two-year-old in critical condition. Like night terrors at 3 am with a delirious 7-year-old. Or apoplectic meltdowns in the supermarket and shoes thrown from the back of a minivan. Or Sesame Street and Teletubbies on video loop. Or pet salamanders and pet mice and pet birds, who still poop, even though they’re small. Like all things educational; relentless forms and meetings and bureaucracy, from kinder to college. Like sleep deprivation that lasts for years, and new appliances that last five minutes, and endless sticky messes.

Babies are akin to kittens; adorable at first, but quickly turning into cats. Adoration got me through midnight feedings, hysterical crying, and explosions out both ends. Devotion gets me through the rest: dirty dishes, dirty faces, dirty clothes and dirty rooms. Through broken bones and bruised hearts. Through whatever it takes to get my chicks from here to there, to their moment in the sun, when I, their biggest fan, cheer loudly, “You did it! I knew you could. I knew you would!”

I’m not a perfect mom. Far from it. I lose it on a regular basis (my sanity, my temper, my grip). My kids drive me right over the edge, but I love them with a ferocity bordering on psychotic. I don’t think I’m unique. Mother-love, the most powerful force in the universe, can save the world and I wouldn’t swap it for a stunning body or a hundred trips to Europe or a life of leisure, even on the days I swear I’m this close to selling my offspring to the highest bidder. On the days I need a reminder, I replay in my mind a particular night I put my youngest, the one who defied the odds, to bed. Not yet 2, she’d overheard me referring to her unexpected arrival on the planet as I often did by way of an affectionate nickname. Most likely, I’d had a rough day, since every day’s a challenge when you have toddlers. Presumably I wanted to get her down and escape to a glass of wine. As she nestled close for a kiss she said, “Mama? I you bonus baby, wight?”

Oh, yes. A bonus. Something extra. Much more than I bargained for, the challenges of motherhood were impossible to foresee, but equally unknowable were the profound rewards. And its infinite nature; a mother doesn’t stop mothering when her children are grown. In my mother-in-law’s soothing voice over the phone as she reassures her son, a middle-aged man, is the love of a mom for her little boy. Across the miles, in an email, my mother’s words carry a tender caress to me, her daughter, the mother of grown children herself.

There will be no more babies, at least not from my womb. Someday in the not-too-distant future, the babies of my babies will christen me Grammy or Nana or Gran. The thought is surreal, yet, enchanting. When the child of my child is placed in my arms, I will lean in close and press my cheek to that precious face, so new, yet so familiar. I will inhale the intoxicating fragrance of newborn skin and look into soulful eyes seeing generations past and future. And in the sacred hush I might hear heaven whisper, “This is the meaning of life.”

1 Comment

Filed under Aging, Babies, Childbirth, Family, Letting Go, Marriage, Motherhood, Parenting, Self-Care

Leap From the Nest

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.

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.

Continue reading

Leave a Comment

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

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.

Continue reading

1 Comment

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

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

2 Comments

Filed under Down syndrome, Growing Up, Letting Go, Motherhood, Parenting, Special Needs