Category 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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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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Coming Home

Ethan and Sydney at the magic moment

The night is a pleasant 68 degrees, but heat emanates from the bright stadium lights, and I’m damp beneath my Rock Bridge High School T-shirt. My boots clink on the aluminum steps as I climb past the student section and up the bleachers. A few people in the stands wave and others call out “Good luck!” I slide into the seat my husband, Steven saved for me while I helped our daughter, Sydney, execute the night’s events. ​​

“She’s ready,” I say, glancing at the scoreboard. A minute thirty left in the half. Steven pats my leg.

“But are you?” he says with raised eyebrows and a smile.

From our perch, I see her on the sideline with the rest of the homecoming court. Stunning in a full-length navy dress and silver pumps — from the children’s department, she wears a white sash like the nine other lovely, accomplished candidates. Suddenly she punches an arm forward and stomps her foot.

What is she doing?” I say. “Oh, no. Is that the whip? Or is it the nae nae?” I prepare to bolt down to the field, but Ethan, her escort is on it. He takes her hand and gently tucks it into his elbow.

This sweet young man, handsome in his brand-new suit, is a fellow cheerleader, but more, he’s her friend. Throughout the years there have been many — Katey and Raegan and Lindsey and Jordan, the kids who’ve seen Sydney first and her disability second.

“Thank God for Ethan,” I say to my husband as we both keep our eyes trained on our daughter below. “Come on Syd, keep it together,” I whisper nervously.

Jordan, Sydney, and Ethan

When Sydney was born with Down syndrome, we had no idea what to expect. She was a cherubic baby with coppery red hair, an adorable button nose and sparkling blue eyes. She loved people and music and food. Not much has changed in 18 years, except now, rather than suspect, we know what a gift she is. Sensitive and compassionate, Sydney regards herself and others without judgment. She accepts everyone just as they are, though the reciprocal has not always been the case.

We’ve made inclusion with her developing peers a priority, which has often meant that I go along to parties and field trips and dances, I sleep in a cabin of seventh grade girls at science camp, and learn the routine for cheer tryouts to teach to her. As I’ve observed the kids in their natural habitat, I’ve seen the bravado that masks their insecurities. The pretense actually reveals an awkward and touching innocence. They’re all searching for their place in the world by measuring themselves against one another. They all want to be accepted. Sydney is no different, she’s just more transparent.

I remember the day she said to me, “Mom, somehow I’m a little different,” with a look of resignation so full of knowing I wanted to wrap her in my arms and never let her go. But to champion her true potential, I’ve had to do just that: Let Go. Again and again and again, tempering my instinct to protect her. I’ve tried instead to empower her, to love herself, to ​​be herself, even if it risks rejection.

Last night, I fell asleep on the couch, exhausted by the activities of homecoming week. My phone buzzed, startling me awake. Sydney, alone in her room, texted me, as is her practice, with her deepest thoughts and feelings.

I feel very emotional 😭 and I’m literally FREAKING Out

I’m so proud of you, honey. It’s a big day tomorrow!

Thanks mom I am praying for you 🙏🏻 thanks for all your supports and needs you deserve to have an awesome award 🥇goes to you I mean it you did it you helped me through times and lots of supporting so thank you mom you are great I love you so much ❤️

Mothering a child with special needs brings the same unbearably exquisite moments coupled with the same painful heartaches, the same sleepless nights, and the same anxiety.

I love you, too. You are fabulous. 😘️

Thanks mom I love you more than cheese 🧀

And mothering this one always brings a smile to my face.

The time has arrived and the crowd quiets as the announcer begins introducing candidates alphabetically. Sydney’s last name puts her at the 50-yard line.

“And now, the 2017 Homecoming Queen is . . . ” The words echo across the football field in a pregnant pause.

“Sydney Kent!”

We’re on our feet as the crowd erupts. The students roar. Sydney’s big sister squeals. Her dad beams. Ethan picks up our girl and swings her around, a genuine princess moment. The crown placed on her head slips down over her eyes and she’s rushed by screaming cheerleaders, who claim her as their own.

RBHS Varsity Cheer Squad 2017-2018

Awestruck, a deep quiet holds me still. I find it profoundly symbolic; as she’s experiencing this ultimate gesture of acceptance, I’m far away, watching. Sydney is on her own. A surge of hope for our collective future swells within me and my heart fills with gratitude for this community and these students. With their vote, these beautiful kids said: “We see you. You belong with us.” And that message doesn’t just change her, it changes them. It changes all of us.

My friend in the row below turns around and jubilantly places both hands on my face, saying “Oh, my gosh, Lisa! You better get down there!” My reverie is broken; everything shifts into fast forward as I make my way down the stairs, laughing through my tears.

Published March, 28 2018 in COMO Living Magazine

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

Confessions Of A Reluctant Stage Mom

“I’d like to go to brunch,” I say, loading my athletic shoes into my gym bag. A suitcase sits open on the floor. My husband carefully lays out his dry cleaning on the bed for yet another business trip. I circle him, gathering my notes and music for yet another class. Leaning out of our bedroom door, I holler across the house to the girls. “Leaving in five minutes! Get your stuff together.”

After I teach we’ve got to go straight to yet another of their activities. I turn back to Steven.

“You know,” I continue, toggling between conversations at rapid speed, “like other middle-aged couples do on Sundays. Spontaneously. By them-SELVES.”

Sydney, still in her PJs, walks around the corner.

“What are you doing? Get dressed!” I moan.

Exasperated, I give her a gentle shove in the direction of her clothing laid out in the living room. Over my shoulder, I whine, “You. Me. Mimosas. Is that too much to ask?”

We are not a middle-aged couple who brunch because those people’s children have grown and flown, and two of our four are still at home, dependent on us for food, shelter and filling out forms. Besides school and Mom and Dad’s “day” jobs, orchestra, choir and cheer practices, and visits to the doctor, dentist and orthodontist fill our jam-packed schedules. Making it work takes a savvy mix of Type-A organizational skills and go-with-the-flow flexibility. Even with a smartphone and Haley’s photographic memory, some things disappear from my radar. (Serves me right, I ‘spose — back in the days when I kept my calendar in my head, I tsk-tsked plenty at the moms who spaced appointments. Tip from my older, wiser self: Go ahead, judge, but it will bite you in the bum.)

Like many families, our baseline level of rush-and-go hovers consistently at “Hurry up, we’re late!” and “Do you have your violin?” and “Remember, I’m picking you up. Do NOT ride the bus!” Under duress, the barometer pushes into the red with “How can you not know where your poms are, you just HAD them?!” and “What did I do with my keys? I swear I just had them.” Mom’s taxi puts down a lot of miles with three to four trips out and back every day. The driving is one thing, but it’s the level of involvement that costs. If I can drop at the curb, energy output is minimal. That’s usually Haley. But, if I have to go in, engage and even TALK to people, the meter starts ticking. And that’s usually Sydney.

When she was born with Down syndrome, I had a vague notion of the extra support she’d need, but I couldn’t know just what it would demand. For her to succeed, especially in environments composed of her typically developing peers, she can’t go it alone: Mom gotsta go with. Birthday parties at Chuck E. Cheese’s and Going Bonkers? Playdates at friends’ homes? Picnics at the pool, festivals at the park and field trips to the zoo? After-school clubs and karaoke nights? I’ve been to all of them, a few particularly memorable highlights resulting in the blogs, “It’s About The Dance” and “Kids Can Save The World, or Lisa Goes To Science Camp.”

But, I am no heroic mother. Trust me, quite the contrary. On the nights that don’t end until 10 p.m. because after cheer practice, there’s still Sydney’s hair to curl for show choir dress rehearsal — dividing the heavy and wet sections and rolling them into sponge curlers while she cries — on those nights, I find it difficult to disguise the tired, impatient little man inside me. You know the one: Mr. Incredible’s boss, Gilbert Huph? “I’m not happy. NOT. HAPPY.”

It’s not that I resent it so much as I resist it; the pull of her special needs and what that requires of me. Plenty of times I’d rather be anywhere else than a high-school basketball game. But, not going is not an option. I won’t deprive her of the opportunities for fun and growth my other children have/had. Building relationships and making memories is what high school is all about. For that reason, I happily do what I must for my daughter, even when I’m decidedly not happy doing it.

Case in point: the show choir concert. Sydney’ high school performing-arts program has a reputation that doesn’t disappoint. Even the novice freshman choir takes its commitment seriously with clear expectations from the start. Tonight I have curled, styled and sprayed her hair into submission — an emotional ordeal for the both of us — and superglued French-tipped fingernails to her tiny nail beds. Lastly, I’m putting makeup, including foundation, eye shadow, eyeliner and mascara, on my daughter’s porcelain skin; my daughter who prefers natural beauty and balks at this intrusion. I hold the back of her head to line her lower eyelid and tell her for the 25th time to look UP, feeling my patience wane as she lifts her chin even higher, but keeps her eyes down.

“LOOK up. Your eyes, Syd!”

Sydney feels my impatience too, and her eyes well up.

I pull her close, blotting her tears quickly with a Kleenex, and tell her I’m sorry I’ve hurt her feelings, but she’s going to ruin her makeup!

“It’s OK, Mom. I’m fine,” she says, mustering her courage. I finish the job, getting us out the door and to call only a few minutes late.

While other moms find their seats, I’m backstage looking for the dressing room. Teeming with half-dressed girls leaning into mirrors, yelling across the room, laughing and talking and singing, it’s chaotic and adrenaline-charged. Sydney, sensitive to sensory input and a bit overwhelmed, follows me closely as we weave through bodies in search of her costume. I’m directed to a satin dress, covered in sparkling gems, with barely-there spaghetti straps, hanging in a plastic bag with her name on it. There are Spanx and tights and size 1 character shoes with a 2-inch heel, too. We retreat to a corner and I help slide her little toes into pantyhose and her little feet into the dance shoes. I zip up her dress and spin her around. Altered for her smaller frame, the dress fits perfectly. I clip the finishing touch–dangling rhinestone earrings–onto her ear lobes and step back. I’m blown away by this stunning, lovely young lady. She is talented and able, and no less so for needing my help putting on her undies and buckling her shoes.

Sydney can take it from here, so I give her a squeeze and go join my family, collapsing into the seat with relief just in time. The band strikes up the opening number and the freshman choir spills onto the stage, mounting the risers and belting out an upbeat number that instantly delights the audience. Energetic and vibrant, they move across the stage, in and out of clever formations, dancing and kicking and twirling. Fists pumping and hands clapping, it’s “Glee” in real life. And there in the middle, looking just like the other girls, if a miniature-sized version, is Sydney, grooving along and singing her heart out. She knows the words. She knows all moves. She knows no fear.

It comes to me in a rush, all at once, knocking the wind out of me: the realization of just how capable she is. She can DO this. She IS doing this! A sob rises in my throat and I stifle it with my palm. I look over at my husband who is already looking at me. Boundless pride pulses between us; shared in a way that is ours alone as her parents. In silent celebration, we clasp hands and I let my tears come.

The vocals swell and the big finish approaches. At the dramatic ending, in perfect timing, Sydney shoots her arm to the ceiling, jazz hand extended, and throws her head back. She and the rest of the choir hold the pose through the applause. Magic fills the auditorium. I’m flooded with gratitude for these sweet kids who have accepted Sydney as one of their own, for all the teachers and paras and adults who invest in her and continue to draw out her strengths, and for the man by my side, who resonates devotion; the powerful love that transcends any limitation, including busy-ness and weariness. He knows it’s worth whatever it takes to see Sydney, as normal as any other kid, following her dreams.

It’s even worth skipping brunch.

 

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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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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

Snow Day

snow

I fall for it every time; I get sucked in as soon as the text buzzes on my cell phone, the email lands in my inbox, and the answering machine picks up the recording (no more need to check the scrolling list of school closings at the bottom of the TV screen): “Due to winter weather conditions, school will not be in session tomorrow.”

The kids yelp and run around in circles. “SNOW DAY!!”

Mentally I do a little happy dance as I fantasize about sleeping in and snuggling up. I envision making a big pot of soup and catching an old movie. I love the snow; it’s magical when it falls thickly and blankets the ground. I love it even more when I can stay home. Thoughts of relaxing with my family for an unexpected day in make me all warm and fuzzy.

However … the imagined cozy scene is short-lived. In the morning I’m quickly reminded of how things really go. Haley, my 5th grader, is literally bouncing off the walls; she careens into the kitchen after banging into the doorframe, slides across the tile floor in her socks and wipes out, smacking her elbow on a chair on her way down. She’s wounded and howling.

“Ow, ow, ow!  Ouch!!  That huuu-UUURT!”

But just a few seconds later she resumes her litany: “I’m awake, I’m awake, I’m awake, I’m awake. The sun is awake so I’m awake.”  The refrain continues with a rhythmic accent placed on WAKE.

Coming off of winter break, the girls have already been out of school for 2 weeks. This is our 17th day of togetherness, but who’s counting?

“It snowed, it snowed, it snowed, it snowed!” Haley twirls around singing, “Later on, we’ll conspire as we dream by the fire! In the meadow we can build a snooooooowwwman.” She stops abruptly. “Hey!  We can build a snowman!”

Suddenly she’s pulling her snowsuit over her fleece jammies and stuffing her bare feet in snow boots. “I’m gonna make a snow angel!” Her enthusiasm is boundless, but so is my exhaustion as I watch her dig through the winter gear, flinging coats and hats and gloves far and wide until she finds, at the very bottom, her scarf.

“You haven’t even had breakfast yet,” I say, realizing I haven’t even had coffee yet either. No wonder. “And you haven’t had your pill,” I add.  No wonder.

“Come here and just chill.” I call her back to the kitchen.

“I need to chill. I need to chill.” She closes her eyes and repeats the words, slowly this time, as if in meditation, “I need to chill. I need to chill.”

Her eyes snap open, her quest for serenity over. “I need to take a cheeeeeell pill, a cheeeeeell pill, a cheeeeeell pill.”

“Haley, you are a diva,” Sydney says, standing quietly in her bra and boy shorts, watching as her sister cavorts around the kitchen. Sydney is the antithesis of her sibling in personality. Four years older, Syd has Down syndrome which makes her pretty chill by nature.

Smiling, I hold out my hand to Haley. “Here’s your ‘chill’ pill,” I say, her daily Ritalin in my palm.

“No, it’s not,” she says.

“Yes, it is,” I answer.

“No, it’s not,” she quips.

“Yes, it actually is your ‘chill’ pill,” I say, gesturing emphatically with my palm. Why, exactly, am I engaging?

“No, it’s NOT!”  she laughs. “It’s my chill and grill pill.” Grabbing it from my palm, she gulps it down with a swig of milk and takes off again, running to the back door.  Looking through the glass she says, “Oooh! OOOOOOhhhhhh! Look at the snow! It’s ba-ba-ba-blowing. Look at the drifts, the way the wind moves it and the, . . hey, birdies!  Hello birdies!”

She does eventually get outside, dragging Sydney along with her, Sydney who hates the cold and hates the snow and hates being bundled up even more. Wrapping a scarf around her neck, I say, “Honey, it’s really cold out there, you have to cover your skin.” Sydney yanks it off in an uncharacteristic display of defiance, pulling her own hair in the process.

“Oookay,” I concede. “Let’s just zip you all the way up then.”

They waddle outside and around the back to a sweet little sledding track that runs between our house and the neighbor’s. We’re letting them go out by themselves this year, checking occasionally out the window. Assuming that if anyone is screaming or bleeding I’ll hear about it, I feel pretty comfortable taking advantage of the free time to talk on the phone while I take the Christmas tree down.

Removing bulbs of all sizes, I place them gently in their boxes. As I unwind the lights from the branches, my earphone feeds me my sister’s voice from Oregon. I pass by the window and see the girls together, having a blast. I can vaguely hear their shouts and laughter as they slide on plastic discs down the hill. I continue my conversation, thinking all is well suddenly, Steven comes stomping up from where he’s working downstairs–somewhere with a clear view of the back yard.

“Ha-ley!”

“What now?” I say to my husband.

“Do you need to go?” my sister asks.

“She’s got garden tools!” Steven growls, going around to the front, yelling out the door.

“Haley! Come up here and bring those with you. Right. Now!”

“What’s going on?” I ask him. Then I see. Haley is using large sharp metal tools as walking sticks—or pickaxes—to stab the snow and pull herself up the hill.  Sydney, watching from below, holds a sled and looks miserable.  She’s done.

Once inside, Sydney sheds her wet clothes in a heap by the front door and disappears. The sound of a laugh track from some Disney show or another emits through her closed door. She’s warm, she’s dry, and on a screen away from her sister. She’s happy.

Haley comes dragging in after returning everything to the garage. Dejected and sad, she says, “Sydney won’t play with me. There’s no one to play with!” For emphasis she adds, “Huummppph,” and tries to fold her arms, but her snow suit is too big.

“I’m bored!  Bored, bored, bored.”

Electronics to the rescue. The Kindle Fire Haley got from Santa this year provides amazing opportunities to download books like Robinson Crusoe and David Copperfield. She also plays Candy Crush and Mine Craft, but hey, they stimulate her mind, too, right? Sydney’s had an iPad for a few years now and uses the math and spelling apps, but left to her own devices, she’s either singing along to a music video or filming a DIY cable segment: “How To Make A Cheese Quesadilla.”

It’s true, we’re a high-tech family. We use phones, laptops, tablets and game devices daily. My sister just told me she’s limiting her son’s screen time. I know we should, too. But not today.

Sydney comes out of her bedroom in a daze and opens the fridge. She stands and stares. Then she reaches very slowly inside, her hand outstretched towards the egg carton.

“What are you doing?” I ask.

“I was just, um, just feeling like, um, I just love eggs?”

“Do you want something to eat?” I ask.

“Sure!” Sydney’s eyes glow.  Haley talks to fill the time. Sydney eats.

And now the kitchen is breached.  They swarm as the food comes out . . .  again.  The dishes pile up . . . again.  I’m bombarded. Both girls talking at once, telling me what they want, what they’re doing, what they want to do, what they’ve just read, what they’re going to read, what they want me to read.

Fragments, words, bits and pieces of sentences float around me. I have lost the ability to form complete thoughts and respond patiently and coherently to my children. Tuning them out has moved beyond a survival skill to a habit.

“Uh-huh.”

“Yeah.”

“What?”

“Right.”

“Really?  Wow.”

“That’s awesome.”

An image comes to my mind of the aliens in the movie, Mars Attacks.  Upon hearing Slim Whitman’s piercing yodel, they drop to their knees, clutching the clear globes that protect their huge, exposed gray matter. In agony, the creatures writhe on the ground until their pulsing brains explode and green goo coats the inside of their helmets.

Snow ice cream and blanket forts and frozen bubbles. Projects and puzzles and playmates. This is what they need from me and it’s what I just can’t (or won’t?) give them 100% of the time. Part of the reason is probably my age and the fact that I’m just plain wearing out on the mothering front, but it’s also because I’ve never actually loved getting down on the floor with my kids or going to the park or making crafts or baking cookies.  And though I’ve spent a fair amount of time feeling guilty over it, I’ve come to terms with it.  I know who I am . . .  and so do they. Why I was thinking that staying home, confined to my house with my bored, squabbling children was going to be fun, I can only guess.

“Look, look!  Mom! Come here, I want you to watch. You have to come here to see.”

Haley has moved to the hallway, incessantly filling the air with words. I glance up.

She’s lying on her back with her legs lifted. “See!  I can open and close the door with my FEET!”

“Can you close your mouth with your feet?” Steven, walking through the kitchen, drops the one-liner with perfect timing.

As I’m chuckling at my husband’s quick wit, my text tone sounds.

“Honey, your phone,” he says.

I pick it up, swipe and read:

“Due to winter weather conditions, school will not be in session tomorrow.”

“NOOOoooooo!”

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Filed under ADHD, Christmas, Family, Motherhood, Parenting, Sisterhood, Special Needs

Just Like That

Melissa

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

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

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

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

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

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

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

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

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

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

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

We also watched our own home movies.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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