Category Archives: Special Needs

Making Tear Soup

Tear Soup“Are you going to Colorado tomorrow, Mom?”

Sydney stands in front of the refrigerator and asks the question for the third time this morning.

“No, honey.  Two weeks, remember?  In two weeks.”

I gently nudge her out of the way to open the door and place the milk jug on the top shelf.

“Two weeks. Yes.” She repeats to herself. “So, not tomorrow?” she asks, stepping towards me.

“Nope.  Not tomorrow,” I say, bending around her to put the oatmeal in the cupboard.

“Where’s Dad?” she asks, following me to the sink where I rinse breakfast bowls, our conversation a déjà vu of earlier when I ladled the hot cereal into these same bowls.

“Dad’s at PaPa’s, remember?”

“At PaPa’s?”

Sydney typically wants reiteration of our comings and goings—repeating the schedule outloud makes her feel secure—but lately, she’s been needing extra reassurance that her Dad and I will be around.  Lately . . .  since her grandmother died of leukemia.

“Yes, at PaPa’s house. They’re watching movies and having dinner,” I answer, placing the dishes in the dishwasher.

“Having dinner?”  She echoes.

“Mm-hmmm,” I reply, looking below the sink for the dishwasher detergent.

Sydney clears her throat, then coughs into her elbow.

“Um, Mom?  Is Dad coming home tonight?”

I take a deep breath.  Patience, Lisa.

“No, remember?  Dad’s staying the night to keep PaPa company so he’s not sad and alone.”  I pour soap into the dispenser, shut the lid and press the start button.

“Because MeMe’s dead, right?” she adds.

There it is.  I wipe my hands on a dish towel and come close, bending down to look at her.

“Right, honey. MeMe is dead.”

Her eyebrows shoot up and her eyes open wide.  She pushes her glasses up on the bridge of her nose, sniffs, and tucks the hair behind her ears.  But she doesn’t cry.  She hasn’t cried.

Children grieve differently than adults, and differently from each other. Refamiliarizing myself with the work of Dr. Elizabeth Kübler-Ross, who in 1969 first proposed the five stages of griefdenial, anger, bargaining, depression and acceptance, reminds me that the phases can be in any sequence, intermittent or overlapping, or even skipped altogether. As a parent, I need to help my children with their grief work as well as tend to my own.

Both girls have been a bit stoic—they can’t possibly understand that their lives have changed irrevocably—though I expect when Thanksgiving and Christmas and their birthdays come around, MeMe’s absence will trigger a new level of realization.  And especially with Sydney, I wonder how much she can conceptualize about the permanence of death.  They both loved their grandmother and will undoubtedly miss her, but it’s been concerning to me they don’t seem more upset.

A package from a dear friend arrived like a long distance hug. Tear Soup: A Recipe for Healing After Loss, written by Pat Schweibert is a consoling story of Grandy who, after suffering a big loss sets out to make tear soup from scratch. Haley and I cuddled up on my bed and read how Grandy chose her largest pot to make her soup because she would need plenty of room for all the feelings and tears to stew in over time.

“. . .  she slowly stirred all her precious and not so precious memories into the pot. Grandy winced when she took a sip of the broth.  All she could taste was salt from her teardrops.  It tasted bitter, but she knew this was where she had to start.”

As I read this sweet but profound metaphor, my own tears began to flow.  Haley had voiced sadness, but hadn’t cried yet.

“I want to cry but I can’t.  I feel like my emotions are locked up in a drawer and I can’t find the key,” she confessed precociously.

Page after page, the book poetically and artfully validated the human experience of bereavement.  Paragraph by paragraph, the words described our unique, acute experience of losing MeMe, and as we read, Haley found her tears.  “Tear Soup is helping us cry,” she said, laying her head on my chest, letting her tears fall on my shirt.  Together, we made tear soup of our own.

As I’m putting the girls to bed that night, Haley says, “Mommy, I miss MeMe.”

Matter-of-factly, Sydney says, “We have the same name: Sydney Kay Kent, Linda Kay Kent.”

“Yes, Sydney,” I say.  “You are named after her.”

Haley asks,  “Why aren’t you sad, Sydney?” her chin quivering.

Sydney answered calmly, “Well, I feel a little bit sad.  I heard Mom cry and I heard Dad cry and PaPa.  But I heard MeMe say, ‘I love you.’  And . . . I danced for her.”

Which was true.  After two hours of greeting friends at the visitation, Sydney had kicked off her shoes and pirouetted across the room to “Wind Beneath my Wings,” closing her eyes and moving expressively to the music in front of the podium which held vases of overflowing yellow daisies, a framed picture of Mom and a small wooden box holding her ashes, beautifully hand-crafted with a ceramic angel atop it and a plaque that read:

“Linda Kay Kent,

June 25, 1944  –  September 7, 2013”

Haley’s eyes squeeze shut against her now-copious tears as she says to her sister, “Don’t you know you’ll never see MeMe again?”

I sigh thinking, no, she doesn’t know.  Sydney doesn’t understand and might not ever.

But then Sydney says this: “Mom, every morning I wait for the bus. I feel her.  MeMe’s in the wind.”

Elusive as it seems, she’s onto something.  Maybe Syd is keeping her MeMe close in subtle ways that we can’t quite grasp, sensing her presence with a calm knowing; sensing her everywhere.  Maybe she doesn’t feel the same sense of loss because for her, MeMe isn’t completely gone.

Wrapping my arms around both my daughters, I reach for the same reassurance; for myself and for them.  Although I miss her, I take comfort in the thought that if I look, I can yet find her; in the wind through the trees, in the birds as they soar, and in the sun’s glorious rays that break through the clouds.  If I listen I can hear her voice and her laugh and feel her live on in my heart.

Our tear soup will be brewing for a long time.  The loss is painful, the memories are sharp and bittersweet, but the love shared is bigger than all of it.  We’re going to be alright.

Leave a Comment

Filed under Down syndrome, Family, Grandparents, Grief, Letting Go, Loss, Memories, Motherhood, Special Needs

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

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.

Continue reading

1 Comment

Filed under Adolescence, Down syndrome, Growing Up, Memories, Motherhood, Parenting, R-Word, Special Needs

In the Love Place

And so lying underneath those stormy skies
She’d say, oh, I know the sun must set to rise.

Paradise by Coldplay

~For Richard, Heidi and Gabriel~

It was Sunday afternoon. The weekend that seemed to stretch out enticingly before me on Friday was, for all intents and purposes, over. I sat on the couch, mindlessly surfing Facebook, playing Angry Birds. I had the ‘Sunday blues,’ that restless dissatisfaction that strikes around 5:00 p.m. when the realization that a weekend filled with relaxation and leisure is just not going to materialize. This happens frequently. My days get filled with grocery shopping, running kids to activities, projects at home, work issues, and other mundane tasks. My fun time gets relegated to Saturday night after the kids go to bed and I pass out halfway through a movie.

I felt a shift coming in the weather foretold by the pounding headache that stormed my skull. Sitting alone I looked out the window at the gathering clouds and malaise settled over me as I thought with a sigh how the girls would be home shortly. I’d have to get up from this couch to start the nighttime routine: wrangle up dinner, corral kids into the shower and herd them to bed. I’d go through Friday folders (Sunday night folders, let’s be real) and look ahead to everyone’s schedules, gearing up for another busy week.

But that was all before I got the news that my brother-in-law had died. Just 45 minutes earlier, while I was lamenting the end of the weekend, he’d taken his last breath and given up the battle he’d waged to the finish. Though he and my sister were separated, in the end, their differences didn’t matter. The strife and tension between them healed spontaneously on his journey from this plane to the next. When cancer took over his body, she took him into her home. She tended to his dying and in the process found forgiveness. Her focus was on creating lasting memories for her son, their son.  He is seven, my nephew, much too young to lose his father. And his father, much too young to lose his life.

Richard suffered in pain and struggled for every breath. He had not come peacefully to his death. The denial tortured both he and Heidi. When his agitation became too great, the meds gave relief and he drifted in a morphine-induced fog. My sister lay down with her husband, pressing her body to his, her mouth to his ear. 

Continue reading

Leave a Comment

Filed under Family, Letting Go, Loss, Marriage, Siblings, Sisterhood, Special Needs

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.

Continue reading

Leave a Comment

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

Joyride

red convertibleThe secret of life is enjoying the passage of time.

Any fool can do it; there ain’t nothing to it.

Nobody knows how we got to the top of the hill.

But since we’re on our way down,

We might as well enjoy the ride.

Sliding down, gliding down, try not to try too hard.

It’s just a lovely ride.

James Taylor—The Secret ‘O Life

I don’t always recognize I’m headed for collapse until, speeding down the freeway at 100 mph, dashboard warnings flashing, I veer off the road to make an emergency stop. I’ve gotten so good at disregarding my maintenance lights, by the time I realize I’m in trouble, I’m already sputtering and careening; out of gas, overheated, or worse, out of control, crashing and taking out everyone around me.

When we moved from Missouri back to Austin, Texas in 2003, circumstances combined to create a fusion of indescribable stress that will go down in Kent family history as The-Time-Which-Must-Not-Be-Named.   Every member of our family was a hot mess; Haley, 5 weeks old, a textbook example of a colicky infant, emitted a type of banshee wailing that could literally wake the dead, and was silenced only when nursing (constantly) or sleeping (rarely).  Sydney, 4 years old, with modulating sensory integration issues, experienced overstimulation, auditorily and otherwise. She was confused and jealous.  Her ‘elopement’ was at an all-time high and, thanks to a very ambitious preschool teacher, potty training had begun in earnest (it took two years to fully train our sweetie and it wasn’t the potty that was so much the problem).  Let that image crystallize for a moment: Clingy, wailing infant on the boob and pooping-in-her-britches toddler on the run.

Continue reading

Leave a Comment

Filed under Down syndrome, Family, Grandparents, Motherhood, Parenting, Self-Care, Siblings, Special Needs, Stress

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

picture-for-heaven-blog-post

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 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.”

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. 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. 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

Joined at the Strands

braid

Sister, you been on my mind.

Sister, we’re two of a kind.

Oh, sister, I’m keepin’ my eye on you.

‘Miss Celie’s Blues’ from TheColor Purple.

My little sister thinks I hung the moon.  Even though I tortured her when we were young—literally—to this day she affords me hero-worship of which I am entirely undeserving.  And when she’s in pain, I still find myself wanting to make everything better though she’s across the country and not in the next room.  2,000 miles separate us now and our visits are too few, too far between. The reunions are bittersweet.  Even still, after a few days together well-worn patterns resurface.  I can be controlling and bossy.  She tends towards flighty and irresponsible. But we have the same nose. And thighs.  We laugh at the same jokes.  We share memories of times both good and not so good.  When we’re together we are children again and neither time nor distance can alter that connection.  Sisters; the love/hate bond of this relationship is like no other, making it one of the most sustaining to span a lifetime.

Continue reading

Leave a Comment

Filed under Babies, Childbirth, Down syndrome, Family, Parenting, Siblings, Sisterhood, Special Needs

Symphony in the Silence

tree notes moon

Simple, profound truths come in quiet moments.  They descend gently in the warmth of a setting sun.  For me, it’s an altered perception, a shift; when time stretches and slows, and epiphanies unfold in brilliant clarity.   My daughter, Sydney lives in those moments.

Life moves fast and some say time itself is speeding up.  The efficiency of our amazing technological advances allows for rapid, immediate digital interactions but rather than creating more space in our lives, it generates a frenetic, frenzied pace as we move faster and faster, trying to do more and more.  As a mom I’ve certainly succumbed to the pressure of technostress.  The conveniences intended to make my life easier actually increase the expectations I place on myself until I am perpetually, chronically, frantically busy.  I’m weary of hearing my own response to the question “How are you?” “So busy. Crazy busy! But great!”   And I mean it; I love my life, but too much doing, not enough being resulted in everything going out and not much coming back in.  Before I knew what had happened the joy I felt in living was shrouded by the responsibilities that living demanded.

Continue reading

Leave a Comment

Filed under Down syndrome, Family, Motherhood, Parenting, Siblings, Sisterhood, Special Needs