Tag Archives: special needs

Rockin’ The Socks for World Down Syndrome Day

Repost from March 21, 2016

The sun goes down
The stars come out
And all that counts
Is here and now
My universe
Will never be the same
I’m glad you came

Steve Mac, The Wanted

My sock drawer is stuffed to overflowing: Everyday athletic socks, fuzzy slipper socks, a few dressy pair of trouser socks. But my special collection consists of crazy, colorful knee socks and on March 21st I’ll have plenty to choose from in honor of World Down Syndrome Day.

Trisomy 21 is the technical term for Down Syndrome. Chromosomes made up of DNA exist in every human cell, typically 46 chromosomes or 23 sets of two. In the case of DS, an abnormality occurs, resulting in an extra chromosome, 47 in all. The extra, third chromosome is on 21st set. 3-21. Hence, March 21st was officially declared the day the world would recognize these extraordinary individuals.

From Australia to Zambia, the unique talents and abilities of people with Down Syndrome are celebrated. The invitation is extended all around the globe to rally behind the #lotsofsocks campaign. To get people talking and asking questions, the organizers of WDSD recommend wearing, “not just any socks, but brightly colored socks, mismatched socks, long socks, printed socks, one sock. Maybe even three socks, one for each chromosome.”

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Filed under Babies, Childbirth, Down syndrome, Family, Gratitude, Growing Up, Motherhood, Parenting, Special Needs

Just Breathe

Re-posted from March 6, 2014

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

Sylvia Plath

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

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

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

Sydney at seven

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

{Inhale}

{Exhale}

{Inhale}

{Exhale}

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

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Becoming

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

She cried and mumbled something incoherently.

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

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

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

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

Some things, we don’t grow out of.

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

And Miles To Go Before I Sleep

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

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

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

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

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

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

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

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

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

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

“Can I sleep with you tonight?”

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

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

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

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

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

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

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

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

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

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

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

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

Big Rocks

I ran out of time. For a year I intended to write about turning 50 – a contemplative, insightful piece extoling the wisdom gained from living for half a century, but in a few days I’ll be 51.  Gone the way of shoulder pads and stirrup pants, like it or not, the time has passed.

I ran out of time though I’ve tried diligently to slow down my life and clear some space. Simplify, downsize, prioritize; these are my buzz words.  Progress is evident, although the perfect balance wherein I fulfill my roles of mother, wife, daughter, sister, friend and instructor, and manage to shave under my arms occasionally . . . this eludes me still.

The other night, my father-in-law, glancing at my Google calendar on my iPhone, its colorful blocks stacked atop, beside and overlapping each other like a patchwork quilt, looked from the screen to my face and said, “You’re too busy.”

This, I know.  How to change it, I do not.

“What can I cut, Dad?” I asked, a little desperate, a little exasperated.

Life seems to be speeding up, or perhaps it’s that more life is crammed into a single day.  I know my parents’ generation raised their families in a slower time. Compare a rotary phone on the wall, its handset tethered by a 10 foot spiral cord, to a smart phone, handheld and able to, at virtually any time, any place, connect to limitless information . . . and limitless other smart phones.  Technology adds convenience, but these instant connections, particularly in the form of text messages, demand instant responses, & idk if we r betr 4 it.

During the last week of school my moderately frenetic pace kicked up to severely frantic.  With routines out of whack, extra activities to manage and preparations for the upcoming summer vacation (‘vacation’ is truly a misnomer), the needle on my stress gauge pushed into the red.

With Type-A drive I tackled numerous projects at once, the way I know best – with sleep deprivation and coffee.  The goal; to knock out as many items as quickly as possible.  My monkey-mind chanted an endless to-do list like a scrolling marquee across the back of my mind.  I was running out of time.

In the midst of it all, Sydney had, as a result of a sleep study and the subsequent diagnosis of obstructive sleep apnea (common in kids with Down syndrome), a tonsillectomy, and was spending the week recovering at home. Before surgery, she charmed the staff with her smiles and snappy come-backs, but afterward, my brave girl was miserable and understandably, a bit grumpy.  We stuck to an alternating 3 hour dosing of Tylenol and Motrin to keep the pain at bay.  Armed with popsicles and ice cream and soup and mashed potatoes, we told her she could watch as much Disney Channel as she liked.

Since Sydney’s my easy-going kid, stoic with a high tolerance for discomfort and doesn’t complain often, I figured it would be, for the most part, business as usual.  Steven and I arranged our schedules to trade off being home, but I anticipated that while she rested I’d be able to toggle between making milkshakes and sending emails.

Uh, yeah.  No.

She didn’t really rest.  In fact, she was rest-less, never settling for more than 30 minutes at a time.  She couldn’t focus on TV, it hurt too much to eat (even ice cream), and she had no interest in her iPad.  She wanted to talk.  To me.

“Um, excuse me, Mom?”  Sydney asked from the table.  “Why my voice is low?”

I answered from my computer without looking.  “It’s from your tonsils, remember?”

I’d just blended a smoothie to chase a round of medicine, hoping for a few free minutes to compose an email.   “Don’t worry.  It won’t last.”

“Why can’t I go to school?” she asked.

“Hmmmm?” I replied, fingers flying over the keys. “School?”

“Why am I not at school?”  She repeated.

I could picture her face though my back was to her; eyes opened wide behind purple wire-frames, eyebrows arched high, her mouth frozen in the shape of the last vowel sound she made.  She’d asked this question every day, several times a day, for the last week.

“You know why.  You tell me, why you aren’t you in school?”  I said trying to be patient, though I felt anything but.

“Because I had my tonsils out?” she asked, acting unsure.

But she knew.  I’d noticed her strategy of waiting for me to pick up my phone, then immediately starting in with obvious questions to which she knew the answer.  The more I needed to concentrate, the more effort she made to divert my attention.  And the more she kept me from working, the more annoying it became.  In front of me, my iMac displayed the afternoon’s tasks; open Word documents, several tabs on the web browser, iTunes with my playlists for teaching, an unfinished email to Sydney’s teacher.  And my calendar.  Always my calendar.

Behind me, my daughter waited for an answer.

Realizing it had been several seconds, I turned and looked directly into her eyes. “Yes, honey,” I said firmly, “because you had your tonsils out.”

Her days were long, her throat hurt and she was lonely.  My compassion stirred when she said, “I just miss my friends, Mom.”

“I know, sweetie.  I’m sorry.” I got up and walked to her, resigned to the conversation for the moment.

“Good job! You drank your whole smoothie!”  I said with over-the-top enthusiasm as I took the empty cup to the kitchen sink.

She soaked up the praise with a smile and a shy little shrug.

“I know you miss your friends, but you’ll see them at yearbook signing, remember?”

She perked visibly at the mention. “Oh, yeah!  Yearbook signing. On Thursday, right?”

“Yep.  On Thursday.”

She sat without speaking as I rinsed dishes and loaded them into the dishwasher.  Though I heard my daughter’s angst, my monkey-mind chattered louder, calculating what was due when.  I was running out of time.

“Mom needs to get some work done now, Syd.  Okay?”

She was quiet.

“How about a pudding?”

She nodded.

“Do you want anything else?” I asked.  “I can put on a movie.”

“No, I’m fine,” Sydney said, matter-of-factly.

I registered her disappointment, but I was up against a deadline and the detailed work required focus.  I sat down once again and the clacking of the keyboard filled the silence.  For 15 seconds.

“Mom? Excuse me.”

Like clockwork.

“Wow,” I said, taking a deep breath.   Patience, Lisa.  “You sure are talking a lot today.  Doesn’t that hurt your throat?”

“No-oo!” she answered emphatically.  “I just . . . , I just have tonsil breath,” she stammered, referring to the unfortunate halitosis following a tonsillectomy.

Her voice, from behind, carried recognition; she knew what she was doing, but couldn’t stop herself.  I didn’t catch the rest of what she said; I was reading the three texts I’d just received. My adrenaline rose as my shoulders tensed up to my ears.  And my monkey-mind chanted away.  Running. Out. Of. Time.

“I know I’m talking a lot,” Sydney admitted.

Tapped, no restraint remaining, I interjected, “And . . .  you’re driving me CRA-zy.”

An offhand remark, casual, yet careless, it stung with more bite than was intended.  But I didn’t know that yet.  I went on with my work for a minute before a subtle energy permeated my unraveling focus.  I felt more than heard something and turned around.

Grimacing with silent sobs, Sydney bent over her pudding, shoving bite after bite in her mouth until it overflowed.  She inhaled sharply and coughed.  Snot billowed from her nose until her face was a mass of chocolatey mucus.

“Oh, honey!”  I jumped up and grabbed a Kleenex, wiping her nose and mouth quickly.   “Swallow,” I said, holding the straw of her water jug to her mouth.  “Breathe,” I directed.  She cleared her throat repeatedly then took a shaky breath as she tried to calm herself.

When she could talk, she said softly, “I get it, Mom.”  Speaking with a wisdom I forget she is capable of, her words held the implication that she did indeed understand how swamped I was and that she was doing her best not to need too much from me.

“I know we have a busy schedule?” she continued, shrugging and turning one palm up as if to say, ‘it is what it is,’ “but,” her small voice quivered, “you’re going to the gym and . . . ,” she paused, “And . . .  and . . . and I just really . . . “

I waited, my attention fully–and finally–and my daughter.

” . . .  miss you.”  The last two words came out high-pitched and barely audible.

Her chin trembled. She tucked her head down and reaching her index finger underneath her glasses, and wiped fresh tears from her eyes.  Lifting her head with a slow inhalation, she looked to see if I was watching, then choked out the words, “but, I . . . just . . . NEED . . .  you!”   And with that, she abandoned her fight to hold back the tide of her emotions.

Remorse hit me like a wave.  My heart broke open wide. The tightness in my chest loosened and slid away as I gathered her in my arms.  She buried her gooey face in my belly and we both cried.

In the past I would have castigated myself for being a bad mother, but as an older parent, my compassion extends to myself as well.  With maturity comes the recognition that when I’m drained by overdoing, I lack what she needs from me; it’s just not there. I can’t make it materialize.  Conclusion: In order to take care of Sydney, I need to take care of myself.

The overdoing has to stop.  This I know.  How I to change it, I have not known.  But perhaps the analogy of sand, pebbles and rocks in a glass jar illustrates how.  My time – a finite amount – is represented by the glass jar; the sand, pebbles and rocks are all the many, many things that fill that time, ranging from smallest to biggest.  Fill the jar starting with the sand and only a few big rocks will fit.  But reverse the order and miraculously, everything slips into place.  It becomes clear to me: if the big rocks are gonna fit, they must go in first.

My fatal flaw? Everything has been a big rock; I’ve missed the distinction between size and texture and value.  But now I know it just ain’t so.  Obviously, Sydney is a bona fide big rock along with my other children and my husband.  But, what about me?   Is it possible to forgo some sand and pebbles to make room for a big rock of my own?  I don’t know whose permission I’ve been waiting for.  Who’s jar is it, anyway?  In my 50th year, these shifting perceptions and realigning priorities influence my choices more than external expectations.  The voice I’m attuning to now comes from within – not without – myself.

My friend, Jackie once told me, special-needs mom to special-needs mom: “There is just no way to get it all done, so I have to let some things, the less important things slip.”  Since it is my jar, I get to decide what’s more, and less, important.  If worry about the big rocks, the rest can slip.  No more running out of time for what really matters.

I untangled from Sydney and pulled back to look at her puffy, reddened eyes.  I sighed, smoothing her hair back from her face.  Such a precious girl.  My daughter.

“Do you want to watch a movie?” I asked.

She looked crestfallen.  I’m sure she was thinking, ‘Mom is shoving me off again.’

I added, “With me?” and a smile lit up her face as we headed to the couch.

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Filed under Adolescence, Down syndrome, Enlightenment, Family, Gratitude, Letting Go, Motherhood, Parenting, Self-Care, Special Needs, Stress

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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Filed under Adolescence, Down syndrome, Growing Up, Motherhood, Parenting, 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.

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

Object of Her Affection

Blowing Kisses

“I just have to tell you something.  I’m really liking boys without shirts on.” Sydney confided this secret to her long-time babysitter as they walked downtown close to campus where the streets buzz with college students and it’s not uncommon to see packs of male runners jogging past, sans shirts.  When one particular athlete winked in response to Sydney’s friendly wave, she blew kisses, with both hands.  ‘Right back atcha.’  Yeah, she’s cute.  And she knows it.

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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?

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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

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