Tag Archives: adolescence

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

Enough

I actually did it. For once I followed through on a threat. I’ve battled my children for years — no, decades — over the condition of their bedrooms. When the eldest two were teens, I all but conceded the fight. Their dark, damp rooms devolved into giant petri dishes, emanating mysteriously mingled odors. Clothes covered the floor, and dishes littered every surface; drinking glasses half-full and film-covered, cereal bowls congealed with the remnants of sugary milk, plates smeared with dried-on leftovers. Trash and treasures alike were shoved into nooks or carelessly strewn about, unprotected, revealing a laissez-faire attitude toward expensive teenaged paraphernalia: Game Boys, skateboards, headphones, stacks of loose CDs. The horrific messes frustrated me, but my kids taking everything for granted, that disheartened me. The situation resolved — when they moved out.

I can’t wait that long with the second batch. I’m old and basically one apoplectic fit away from a heart attack. I vowed things would be different and set out with two basic tactics: 1) Stay on top of it; get organized and maintain order, and 2) Teach them to be respectful; expect responsibility and reward compliance.

Mmm-hmm. Yeah.

I organized the play room with color-coded tubs on corresponding shelves. I arranged drawers, cabinets and cubbies. I used LABELS. “A place for everything and everything in its place,” I intoned, and for whole hours at a time their rooms looked like a Pottery Barn catalog — such a sweet sensation! But there was no way I could keep up the relentless policing and cajoling and reinforcing. Even with control issues, I was no match for the destructive force of my children. When I let down, even a little, it all went to hell in a hand basket; the little monsters annihilated my beautifully orchestrated design. Their energy was tornadic — toys, games, books and dolls were flung everywhere. And all those tiny pieces — broken crayons, Barbie shoes, key chains, pennies, paper clips, empty wrappers from Halloween candy and crunched-up chips smuggled in and hidden under the bed. The wreckage sent me into my own tailspin.

 

Prolonging the inevitable, I’d shut the door and walk away. I did not want to see it. Eventually I’d muster the strength and supervise the restoration of order by the demolition crew themselves. And by “supervise” I mean losing patience with their lackluster, apathetic efforts and cleaning it all up myself as they stood by, repentant and cowed into silence by my ranting.

“Look at all this stuff! It’s too much. Seriously, if you girls cannot change, you are destined to become hoarders. You’ll live alone!”

This cycle has repeated itself ten-thousand times, but the last time was different. I was different. I had enough.

“That’s IT. I am DONE! I’m NEVER doing this again. The next time you leave your things all over your room, they will BE. GONE. I MEAN it. I’ll come in here with GARBAGE bags!”

They didn’t believe me, but it was no idle threat; I followed through. Well, Steven did. My husband seemed to think I’d back-pedal, so he waited until I was at work to do the deed.  I came home to 12 heavy-duty black bags sitting in the garage where I park my car. And an empty play room. Epic in scale, their messes flat wore me out, but it was what those messes said about my kids that truly bothered me. It said they don’t appreciate what they have, that they are used to getting what they want; they’ve certainly gotten anything they’ve ever needed. And they don’t value it or the hard work and money it took to purchase their luxuries. As a parent, it’s a hard truth to face: having more than enough has not made them grateful, it’s made them greedy. And I’m to blame.

When we were in high school, my brother, sister and I lived with our single mother in a double-wide trailer. Parked on farmland in southeastern Idaho, we hunkered down for subzero winters and dug ourselves out of snow that began in October and stayed until April. To fight off the brutal cold, we fed a wood stove throughout the night and burrowed into heated waterbeds. My brother and I drove our one car to school after we dropped off our mom at work. Our clothes came from K-Mart, our furniture from thrift stores and when we worked potato harvest, our wages went to the household rather than in our pockets. I got good at pretending I wasn’t hungry on Friday nights at McDonald’s with my friends.

When I became a mother, I wanted my children to have what I didn’t, but in filling that void, maybe I denied them the opportunity to develop something I did have, in spades: a work ethic and sense of responsibility, an appreciation for material things and what it takes to earn them. Gratitude. Perspective. In hindsight, while they were tough, those experiences made me who I am today.

At Christmas, especially, when the anticipation of presents dominate my young daughters’ thoughts, when the reason for the season is buried under retail consumerism and drowned out by advertisements of aisles and aisles of bright, shiny treats, I grapple with how to adjust their attitudes. I long for them to recognize their bounty and share it freely with those in need. At heart, they’re not selfish. Sydney is so sensitive to other people’s feelings and generous. She has literally tried to give people the shirt off her back — or the iPod in her hand. And Haley, who has a special love for little ones, latches on to anything about sick kids. She filled out a donation slip for St. Jude Children’s Hospital and tucked $15 of her own money inside, asking me to mail it for her. My girls are kind and compassionate; they just need a chance to express it. And I need to lead the way.

Where to start? The world is full of hunger and pain and loss — the need so great. What could we do that would make a difference? The answer is simple: Whatever you can give, give. Whatever you can do, do. Mother Teresa said, “If you can’t feed a hundred people, then feed just one.”

In Columbia, you don’t have to look far to find ways to give. Organizations such as The Food Bank for Central and Northeast Missouri, Rainbow House, Coyote HillTrue North and Harvest House are among many worthy causes working tirelessly to serve humanity. Technology makes it possible to impact lives globally as well as locally. One mom I know coordinates an annual packing party for Operation Christmas Child, sponsored by Samaritan’s Purse, an international relief organization. This year, I took the girls. On a Friday night, we gathered to fill shoeboxes with school supplies and hygiene items, socks and hats and flashlights. And toys, of course: dolls, trucks and stuffed animals; things that will surely become prized possessions rather than yet another plaything to be taken for granted. Packing the boxes full, Sydney and Haley topped them off with handwritten letters and their school pictures to add a personal touch and sent them winging their way around the world to be received by children who might not have access to clean water or health care, let alone presents on Christmas Day.

By giving their hearts, my girls realized it’s not about the stuff, and in fact, excessive stuff gets in the way. Material things are not what bring us happiness. Connection, service, love: These are the gifts I want to give my daughters, and the knowledge that they can make a difference themselves, right here at home and across the universe.

So far, it’s sticking. Greed is giving way to benevolence. We’ll keep it up, finding opportunities to reach out. It is far better to give than receive, and they know that now.

The bags containing evidence of their overabundance sat in the garage for a few weeks, giving them plenty of time to think and allowing them to discern what they cherish, what they appreciate and what they can let go of. And in the process, they learned how good it feels to have, not too much, but enough.

 
 

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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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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

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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Kids Can Change the World or Lisa Goes to Science Camp

Screen Shot 2013-05-22 at 10.37.58 PM 3

We don’t even have to try,

It’s always a good time.

Owl City—Good Time

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

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

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

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Leap From the Nest

mama swan

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

Where are you going, my baby, my own?

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

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

Turn Around by Malvina Reynolds and Alan Greene

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

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