May 2, 2014 · 6:17 am

Let It Go

Before moving to Columbia, Missouri, spring break meant a week off school to hang around the house and catch up on projects. I soon learned this is not the case in the Midwest.  In CoMo, it’s ‘hasta la vista, baby,’ and everybody gets outta dodge. Headed to prime vacation destinations like Florida and Mexico (the country, not the city in Missourah, population 11,543), people lay out the big bucks.  And they take their kids with them.

For eight years I didn’t get it.  An Arizona girl transplanted to Texas, I never felt the need to migrate to warmer climates; I already lived there. But, by adopting the Show-Me state as my new home, I’ve been reacquainted with the seasons, and after this particular year – the year of the interminable winter in which the world descended into an icy kind of hell, a frozen apocalypse with subzero temperatures, biting winds, ice storms and snow day upon snow day upon snow day – I got it.

“I’m so cold!  I haven’t been warm in months,” I said to my friend Jane in Phoenix, who at that moment was sitting on her patio shaded by palm trees, enjoying a perfect 75 degrees. “I can’t wait to feel the sun on my face again.”

I pictured myself lying on soft sand, nearly lifeless, basking in the golden rays like a reptile sunning on a rock.

“You’re going to be gone how long?” she asked.

“Nine days.  Granted, it’s four long days of driving, but five full days of camping right across from the beach.  South Padre, baby.  Kicking back at the KOA!”

In my mind’s eye I can see us in our little home away from home: a green sturdy mat to cover the ground outside the trailer, an awning to create a cozy space lined with Little Japanese lanterns that cast a soft glow, music resonating from outdoor speakers. The girls riding their bikes. Steven at the grill, searing steaks, enjoying a beer.  Me, reclined in a comfy camping chair, feet up, wine glass in hand.

“All I’m going to do is relax.”  I said, “And, Steven’s taking his kayak so he can fish.  It’ll be so good for him.”

A nature lover, my husband is most at peace on a lake, river or ocean, casting his reel.  It’s his meditation, his sacred communion.

“And it’ll be good for you.”  Jane said.  “You guys both need this after everything you’ve been through.”

Stress is a buzzword that’s become cliché in our fast-paced culture, but ‘this’ year has been even more intense for us than normal.  A lot of travel, the girls’ medical and educational issues, my job, Steven’s job, our new grandbaby’s heart surgery . . .  well, nothing has been routine for awhile.

And then there’s Mom’s death.

“It’s been six months already,” I said, disbelief in my voice.

Our grief cycles as we learn to live without her; it’s been hard, but more and more the sadness is imbued with vitality and getting away to enjoy each other is a significant part of that healing process.

“So, we’re going,” I exclaimed.  “All the way to the coast!”

Jane celebrated with me over the phone, “I’m happy for you guys.  You really deserve this.”

Steven brought the RV out of hibernation, cleaning and repairing and stocking, and making sure his 4WD truck was tow-worthy.  Ever the über-boyscout, my mate impresses me with his thoroughness, making lists and spending hours following through with his plans which this time included detailed preparations for salt water fishing.  He loaded his kayak atop the roof of the Super Duty.  Protruding over the hood, the end rested on a carrier attached at the grill, forming a visor that framed our view as we headed south on a 1,200 mile trek in search of fun in the sun.

Everyone in their places, we drove; over 22 hours, but we made it, full of anticipation and ready for anything.  Anything, except what we got.

After all that, the weather did not hold up its end of the bargain.   In fact, the elements conspired to create the antithesis of perfect weather. Warm temperatures were nowhere to be found; we wore jeans instead of shorts and jackets rather than short sleeves.  At night every blanket was put to use until we broke down and turned on the heat.  All day, the sun hid, obliterated by cloud-cover, casting a gloomy pall.  Thunderstorms shook the trailer and gales of wind blew day and night, snatching the door out of our hands and slamming it against the side of the RV, whipping up everything in its path, even extinguishing the flame on the BBQ grill.  We retracted the awning and stayed inside.

We were not happy campers.

On the morning of the fourth day, I lay in bed listening to the sound of a downpour – rain dancing with tap shoes on the roof of the trailer – and had a conversation with the petulant teenager who lives inside me.

‘Let it go, Lisa.  You’re ruining your own vacation.’

‘But, this isn’t the vacation I ordered.  This is not the vacation I NEEDED!’

‘The girls are handling it better than you.’

They were such troopers.  Sydney’s ability to go with the flow has always amazed me.  And even Haley wasn’t complaining, finding other things to do.  But hanging out inside our RV wasn’t what we planned.

‘This weather sucks. This totally sucks.’

‘You’re still spending time together as a family.’

‘Three miles shy of Mexico, for the love of Mike!  We came all this way to get out of the cold.’

‘Lisa, shhhhhh.  Let it go.’

Cue music: the infamous melody from Frozen rang through my brain, “Let it go!  Let it go!”  a counter to my stubborn argument. Tenacity and perseverance have gotten me a long way, but this time, a white-knuckled grip on my expectations was not serving me well.

Later that day we passed the time browsing a few touristy gift shops with their shelves of souvenir shot glasses and cheap jewelry, bins of shells and painted starfish and rows of campy T-shirts and hats.

Haley hollered at me a few aisles over, “Mom, look!”

Rounding the corner, she held up a shirt, excited to show me the writing on the front.

“Read it!” she insisted, grinning ear to ear like a little Cheshire cat.

So I read.

God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

Yep.  That’s what it said.

Haley beamed at me as if she’d discovered the meaning of life (and maybe she had).  “I’ve never seen this on a shirt before.  Isn’t that cool?” she asked.

Pretty cool,” I said.

Um, hello?  A personal message from the universe, you think?  Let. It. Go.

I looked at the past few days through this lens.  I didn’t lounge lazily in the hammock like I wanted, but I did cuddle up with my girls to watch movies.  I didn’t play catch with Sydney using those little Velcro mitts, but we did play Candy Land and Go Fish, much to her delight.  Steven and Haley didn’t take their father-daughter fishing excursion (in fact, Dad’s kayak never even touched the water), but, on a nature walk they did find a fantastic creature called a sea hare.  And as a family, we ate delicious seafood at a very cute restaurant on the pier, (while wearing pirate hats), and visited Allison at the Sea Turtle Rescue and Rehabilitation Center, an old sea turtle with only one fin, who wears a prosthesis and stars in a documentary.

Then, on the last day, the clouds evaporated and the glorious sun shone bright, warming the air as the winds calmed.  The spring break paradise we’d been longing for suddenly materialized.  Gathering our gear post haste, we headed to the beach and I lay supine in the sun, eyes closed, drinking in the radiant heat, reptilian instincts satisfied.  Haley surfed on her boogie board, Sydney dug in the sand and Steven combed the beach.  Bittersweet.  We finally got a taste of what we came for.

“Mom, I don’t want to leave,” Haley said.  “The sun just came out.”

Sydney said, “But, I miss my friends.”

I understood the sentiments of both my girls.  Incredibly grateful for one gorgeous day, I was, nonetheless, disappointed that we didn’t have more.  But, I had finally let it go and was ready to go home.

I’m recovering now, adjusting to the discrepancy between what was hoped for and what was.  As I contemplate my resistance to (okay, my utter rejection of) accepting the things I could not change, I had to wonder why was I so terribly disheartened?  Life happens; C’est la vie and all that, right?  But, there was too much riding on the trip; it absolutely had be renewing and rejuvenating.  Desperate for rest, we knew it would be a long time before we could commit this kind of time, money and effort to another lengthy sabbatical.

The life lesson comes in not only leaning into the acceptance piece, but embracing the courage piece; the courage to change the things I can.  Moving forward, I can create time and space in my busy life for recreation before the need becomes critical.  I can infuse my daily routine with all the good things life has to offer, seizing opportunities for joy whenever they present themselves – who said I have to wait?   Using my hard-won wisdom, I can sort out the difference.  I can have . . .  Serenity Now!

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March 19, 2014 · 5:42 pm

The Light Between Us

Image by StockSnap from Pixabay

One love, one blood, one life.
You got to do what you should.
One life with each other, Sisters and Brothers.
One life, but we’re not the same.
We get to carry each other, carry each other.

One, U2

She doesn’t even know them. Not personally, anyway. Connected by three degrees of separation, she’s a friend of a neighbor of the family, this mom, dad and two sons, leading ordinary lives until a few weeks ago when their world was up-ended when the youngest brother received a shocking diagnosis: Stage 4 Medulloblastoma. She doesn’t know them, but no matter. She, too, is a mother, and that’s enough. Today she’ll shave her head for an 8-year-old boy she’s never met.

Movie-star gorgeous, sitting tall and poised, her hands shake in her lap.  She is prepared to be rendered hair-less. Bald. A statement of undeniable solidarity. Long, silky tresses gathered into ponytails sprout from her head, Medusa-like. Her gift is a double offering as the endowment of the hair itself will go to Locks of Love to make wigs for children who have lost theirs. Children like Aiden.

The lights on stage are bright. She squints, looking out over the darkened room. The typical late night crowd of the live music venue has been replaced this Saturday morning with people of all ages. The place is packed. With barely enough room to move, little ones are carried and bigger children are pulled by the hand through clumps of people as their parents edge past to congregate up front. Food vendors and silent auction items line the walls. The community has shown up. They intend and expect to give their support. What they don’t expect is how much they will receive in exchange.

Suspense hangs in the air as the clock ticks down to show time. In the spotlight, three more women–mothers, all of them–sit on folding chairs, draped in plastic capes snapped at the back of their necks. One lives next-door to the family, grown close as neighbors will, by the proximity of their shared lives over the span of years. A drink in the driveway after work, a rant of parenting frustrations, a new gardening idea, a remodeling project. A sick child. Dark brown wavy hair hangs past her shoulders and bangs frame her pretty face.  Brushing a tear from the corner of her eye, she blinks her long eye lashes; extensions that, along with big earrings, will soon accessorize her new look.

The next woman’s hair, thick and black, has been divided into segments, also going to Locks of Love. She smiles broadly, exuberance radiating from her face. Aiden and her young son are best friends and the families neighbors. The boys went to school, camped and rode scooters together until recently. Until the news.

It started with headaches that worsened. Doctor appointments revealed nothing conclusive, but Aiden’s parents persisted. Asking questions, insisting on more investigation, tests and more tests were performed and finally, a 2 ½ inch tumor resting on his brain stem was discovered along with other masses in his brain and tumors on his spine. Not what anyone wants to hear, the family had their answer: a rare and aggressive form of cancer. And with it a surreal new reality filled with surgery, hospitalizations, drugs, finding the best treatment options available, and relocating far from home to get it.

Mom and Dad are Skyping with Aiden today from his hospital room.  Technical difficulties threaten to thwart success and the disappointment is palpable when the connection drops.  After a few more tries, suddenly, there is Aiden, larger than life, yet with a vulnerability that makes him appear small no matter how much of the wall is covered by his projected image. Cheers go up from the throng when this little boy comes into view. His parents lean into the camera and smile their gratitude. The shavees blow kisses and shout their hellos. And with the family’s presence, preparations are finally complete. It can begin.

Excitement buzzes through the audience as people whisper their amazement to one another.

“They’re so brave.” 

“I could never do it.” 

“Can you imagine what they’re going through?”

Referring to the other mothers, these things can also be said of Aiden and his parents. In the air, something magical emerges, an alchemy of love beyond description, and it is the last woman on stage who has made it happen.  Neither a neighbor or a stranger, this mother is an acquaintance, a friend of a neighbor, who socialized with the family casually at barbecues and birthday parties. For years she knew that one day she’d make this choice, for many reasons and many people, not the least of whom is her own mother who died with no hair on her head after enduring not one, but two bouts with two different types of cancer. And the cruelest truth is this: the second cancer was caused by the curing of the first. This woman is colorful from her sassy chin-length brunette mane streaked with red and purple, to her shining eyes and dimples etched deeply into her round cheeks. She radiates joie de vivre even when her voice quivers with emotion during her welcome speech.

Initially, she envisioned a dare; a fun, gutsy campaign culminating in a bold public display that would garner cash, cold and hard, for the family in need. “How much would you pay,” she queried, “to see me shave my head?” When the other three added their momentum, issuing their challenge, a movement was born.

“What are you willing to give to this family if we are willing to cut off all our hair?”

Who wouldn’t admire them enough to donate money, based on their chutzpah alone? No doubt, funds will be raised, but more than money, the rallying of a community around one family garners energy. Efforts expanded as more and more people volunteered, good people who wanted to do something meaningful.  Besides these four, at the end of the day, dozens of others, women and men, mothers and fathers and uncles, even Aiden’s classmates—both girls and boys—will have stepped up and joined the ranks of the hairless to say, “We’re with you.”

On stage, they reach out, hand to hand, forming a linked chain, shaking and laughing and blinking back tears. There’s no turning back. The time is now.  And as this realization takes hold, the noisy, celebratory atmosphere is charged with a profound undercurrent of intensity and an overtone of the sacred. Enrapt, people find themselves strangely moved to tears. For some, a strong and unexpected reaction. These mothers are brave; it is no small thing what they do. It takes guts, but also inspires awe and reverence. Do they know how brave they are?  Possibly, but they would tell you that their courage pales in comparison to the bravery being asked of one small child.

He could be any of theirs, this darling boy with liquid brown eyes and a smile to melt a mother’s heart, who likes snow and ice cream and Dr. Pepper, this typical second-grader who loves his family and his dogs and his pet hamster. A vibrant, happy kid who wants nothing more than to play with his friends–and the chance to grow up. This boy, he is all of theirs.

With a hairdresser for each, the shearing commences simultaneously. Razors are set to scalps. Quick, deft strokes reveal rows of bared skin. Whoops rise up from the house as sheaths of hair fall to the floor and ponytails are severed like dismembered limbs. The impact is powerful. Tears run, unheeded now, down faces, falling to the floor with the locks of hair. This has become far more than a benefit. It is a sacrament. The degrees of separation between neighbors and friends and acquaintances, even strangers, merge and blend until no division exists and all are encompassed by a tangible sense of belonging.

Newly shorn, the women huddle, arm-in-arm. Exhilarated by the fulfillment of their conquest, they laugh through their tears. In disbelief they can’t resist reaching out to rub each other’s heads, now lightened, the weight of all their hair, gone. And the translucent image of Aiden and his parents is cast across the stage, over all of them, and reflected back to those watching. Lighter than air, love lifts the heaviest of burdens and illuminates the soul.  Stripped down, love bares the beautiful, naked truth: no one is ever alone.

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March 6, 2014 · 10:34 am

The Long Haul

Photo by Randee McClung

I’m washing up in a restroom at the Oklahoma City airport and for a moment I can’t place my location: hospital? hotel? restaurant? Elegant water faucets and gleaming granite countertops add to my sense of disorientation. I don’t even recognize my own hands. Looking down at the palms rubbing together, the lather foaming, I watch with detachment as water rinses the suds away to reveal age spots and scars. The shrieking of a turbine dryer cuts the air and I’m fascinated and horrified in equal measure by the effects of high-velocity air on crinkly, tissue-paper skin as it undulates against bird bones, exposing skeletal phalanges and large blue veins, tendons as taut as violin strings. These can’t be my hands.

But they are, as are the 50 years it took them to become this weathered. As is this face that looks back at me from the mirror, eyes reddened and tired, cheeks gaunt — succulent youthful flesh gone, hair a bit frizzy. I lean in closer and smooth my makeup. I reapply my lip-gloss and pat down a few errant curls.

“You’re a grandmother,” I think, scrutinizing my reflection.

Two weeks and two days ago my first grandchild was born; the son of my only son. Jeremy and his wife Carly live 7½ hours south of us. This is my second trip down. The first, an urgent drive prompted by the onset of labor was a magical drive through the night, alone with my thoughts. I wasn’t sure I’d make it, but, as it turned out, life threw the kids a few curve balls. From a long and difficult labor to an emergency C-section to a baby in the NICU, nothing went according to plan. They were thrust into an unforeseen reality both frightening and uncertain.

When it became clear the baby wasn’t going home any time soon, I stayed. It wasn’t even a choice; there was nowhere else I could be. My husband, Steven shouldered the domestic load, my colleagues covered at work, and my busy life went on without me.

After ten long days Ashton was diagnosed with a heart defect that required an immediate operation. I went home for a few days to regroup and came back for the surgery. This time, with Steven traveling on business, I took my daughters who still live at home, Sydney, 14, and Haley, 10, out of school and brought them along. On that momentous day, they sat with us in the waiting room. Headphones on, they munched on Cheez-Its and Slim Jims while I kept my hands busy knitting a baby blanket. Thoughts of the pediatric cardiothoracic surgeon operating on a tiny newborn’s heart the size of a walnut raced around my mind. I tried instead to concentrate on the prayers uttered by many to guide those skillful hands.

Time stretched then folded in on itself; surreal, interminable. Then suddenly, the gowned doctor was there and we exhaled in learning Ashton tolerated the delicate procedure beautifully. A full recovery was expected; the new family would be on their way home soon.

Heady with relief, celebratory even, we’ve come to the airport now to pick up my husband; his absence has been felt. With some logistical creativity — a bit of planes, trains and automobiles — we maneuver to get everyone where they need to be. And in the midst, our typical routine churns along demanding attention. A perpetual balancing act, it’s been the norm for a very long time. Making the choice to spread our children out over 18 years has resulted in a parenting marathon.

We have friends in the trenches of young parenthood; their lives filled with diapers, sleepless nights and temper tantrums. Friends running from soccer games to piano lessons, who help with homework and college applications. We meet them at orchestra concerts and cheer practice and neighborhood BBQs.

We have friends in empty nests; their children gone to college or moving away to embark on careers. Friends welcoming new members into their family as their kids get married and have babies of their own. We swap stories about in-laws, the cost of weddings, and the phenomena of boomerang kids.

We don’t, however, have many friends who’re in both, and who consequently experience what I call CPF: chronic parenting fatigue.

Our oldest, Melissa, was a senior in high school when we were pregnant with our youngest, a fact which repulsed her.

“Ew!” she said, “You’re going to be old parents.”

And she was right. We’re kind of old already and we’re not done yet. I often wonder what will be left of us when all the kids are gone? Who will we be by the time we get there? We are not the same people we once were, not the same couple. The idea that marriage is both strengthened by the challenges of family life and crushed under its weight seems a paradox, but it is profoundly true. Steven and I have never stopped loving one another, but this is not to say we always like each other. Stress and exhaustion make us irritable and sometimes we’re just not nice. Everyone else gets the best of us and all that remains for our beloved is the dregs: we are robbed of the person we love most.

Those are the times I miss my sweetheart. I miss the belly laughs his sharp wit never fails to provoke. I miss his pride in my accomplishments, his comfort when I’m melancholy. I miss the pleasure of his company; gourmet dinners and stimulating conversation. I miss the end of the day when our minds unwind and our bodies entangle; when we make space for each other’s innermost thoughts. I miss spontaneous weekend getaways and leisurely lovemaking. I miss his everyday kisses.

Without these things we’re great business partners, roommates and co-parents, but we aren’t the friends and lovers we started out being. Without this spark of intimacy, our day-to-day is reduced to an endless to-do list wearing us down. And out. As Garth sang, we’re “much too young to feel this damned old.” Stepping out of our responsibilities and indulging our love affair is the only way we’re going to see this through.

It’s beautiful to watch our son and daughter-in-law lean together when life necessitates they surrender control; when patience and the ability to set aside their own needs is called for. Faced with this daunting new role, I wonder if our son knows his parents grapple with the same demands and sometimes teeter on the edge themselves. I doubt he knows what’s ahead in the long haul, but I do know the richness will be far greater than he could ever imagine.

I hitch my purse to my shoulder and take one last look in the mirror.

“Not too bad for a grandma,” I surmise and turn to walk out.

Leaving the restroom my eyes cast forward down the long shiny corridor to the baggage claim where the kids have been waiting for Steven. And then I see him. I drink him in like water in the desert.

He bends over to hug Haley. Sydney throws herself over his back. Jeremy and Carly cluster around him. Everyone is talking at once and I walk toward them, unnoticed. My husband looks up over the top of Haley’s head and our eyes meet. I can’t help but smile as my feet lead me steadily to the arms I can feel around me before I get there. Weaving my way through the commotion, I come in closer and stand on my tiptoes.

“Hey, Granddad,” I whisper, brushing my lips against the 5-o’clock shadow on his jaw. “Let’s go see our baby.”

In that moment I love every chaotic, ecstatic, dynamic morsel that makes up our life and it is all wrapped up in this man, inextricably woven into our journey together. He’s my one and only. Eventually, we’ll make it to a tropical paradise or at least to St. Louis for a weekend, but for now, this is all I need.

 
 
 
 
 
 
 
 
 
 

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February 3, 2014 · 5:09 am

Lisa’s 365

365 grateful

I saw a blurb about this project on January 1, 2014.  Gratitude is pretty trendy right now, but when fully experienced, it can’t be denied that miraculous transformations are possible.  In early 2008 Hailey Bartholomew, a photographer and film-maker, a wife and mother of two from Australia, embarked on a year-long commitment of taking one Polaroid a day, its subject something she felt grateful for.  It began as a visual journal, intended to fight the depression she was feeling, but the impact on her life turned out to be far more significant than she could have imagined.

“The discipline of having to look for the good things that happened every day changed her life in so many ways. Hailey found not only her marriage, spiritual life and health improved, but this project accidentally, wondrously spread and affected the lives of many others.”  Check it out here.

2014 feels like a big year, for me and for a lot of people I love.  We’re on the verge of big transitions and living in a whole new way.  When I saw this project, I thought, “Why NOT?  I can do this. If I start today, in one year I’ll have 365 photos that not only chronicle the abundance I enjoy daily, but hone in on what’s really important, giving me a powerful collage to frame my perspective.  While my photography is certainly amateur, the value is in the process and I envision my focus shifting as the days and weeks go by; seeing things in a new light, or maybe seeing things I never noticed before.  Thank you for allowing me to share it with you; yet another thing to be grateful for.

So, one picture a day from my phone; the sacredness of the ordinary.  For a whole year.  Let’s see what happens.

January

February

March

April

May

June

July

August

September

October

November

December

 

 

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January 7, 2014 · 11:09 pm

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 until 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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January 4, 2014 · 9:40 pm

Just Like That

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.

Melissa

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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November 28, 2013 · 10:34 am

Name Them One By One

Giving thanks for abundance is greater than abundance itself.   ~ Rumi

I love Thanksgiving. It’s Christmas without the endless to-do list. Don’t get me wrong, I’m all about the tree-decorating, light-hanging, mall-shopping, card-sending, present-wrapping, stocking-stuffing frenzy, it’s just I’m usually in a coma by the time the work is done. Visions of sugarplums dancing in my head are often overwhelmed by exhaustion. But, gathering for one day with family and friends, pausing the frenetic doing to simply give thanks for our cornucopia of blessings? Nothing could be better.

I grew up in the Mormon Church. Sunday mornings found my family sitting on long wooden pews in the midst of a large congregation. My favorite part of church by far was the music. Raised by musicians, I’ve been singing since I could talk. From an early age lifting my voice in a joyful noise has been a wholly (holy), transformative experience.

Although I no longer subscribe to the religion of my youth, the songs from childhood still sing to me. Hymns in 4/4 time evoke the visceral memory of breathing in the Old Spice emanating from my father’s freshly-shaven jaw, his neck encircled by a white collared shirt and tie. No matter the season he wore a full suit. I’d lean my head against his strong shoulder, the fabric rough on my cheek, his solidity my fortress. In that place, I was rooted. A lifetime later, the melodies trigger deeply embedded emotions, both poignant and comforting.

Thankful for one more day

One hymn in particular plays in my mind this time of year. A rousing favorite, written at the turn of the century, Count Your Blessings is a lively tune that bounces along with words of advice to rival any ‘keep-your-chin-up’ Disney song sung by cute little animals. The message is emphasized by a dramatic ritardando (slowing) and fermata (hold) at the end: “name them one . . by . . one . . .” And brought home with a snappy happily ever after: “count your many blessings see what God hath done.” The simple but profound truth rings clear–hope is possible, even in the darkest of times, through gratitude.

The world is in pain. People are suffering on levels I have never known and most likely, never will. War rages the globe over. Innocents are killed, cities destroyed. Despair is rampant. Homelessness, poverty and domestic violence crush the human spirit. In my comparatively safe and prosperous life, lamenting hardships feels selfish and insensitive. Yet, adversity is a human experience, no matter our circumstance.

Hope is possible through gratitude

Viktor Frankl, author of Man’s Search for Meaning, said, “… a man’s suffering is similar to the behavior of gas. If a certain quantity of gas is pumped into an empty chamber, it will fill the chamber completely and evenly, no matter how big the chamber. Thus suffering completely fills the human soul and conscious mind, no matter whether the suffering is great or little. Therefore the “size” of human suffering is absolutely relative.”

It’s been four months since my mother died.  I’ve been told the all firsts are difficult and that this Thanksgiving might be particularly hard for me. Mom didn’t have an easy life and towards the end of her 71 years, she experienced more pain than joy, more loss than fulfillment. But she taught me that being free of suffering isn’t the point. Life is a journey of contrasts: heartaches and frustration, contentment and bliss, and to be human is to feel all of it.

Viktor Frankl also said, “The meaning of life is to give life meaning.” Even as we suffer, finding what is good and right and redeeming – that is our salvation. Shining a light on our blessings warms the cold night and illuminates the dark.

To be human is to feel all of it

My mom started a family tradition around the Thanksgiving table. Holding hands, each person takes a turn to name what they’re grateful for. Both light-hearted and poignant, through laughter and tears, our abundance becomes brilliantly clear with each link in the chain.

Today, I count my blessings out loud. I hold hands with all the world and take my turn.

I’m thankful for the aroma of coffee that greets me, just roused from sleep. For the radiance of the full moon in a dark sky at 5:00 am, the world utterly still and hushed. For the clean bite of cold air drawn into my lungs and the vapor as I breathe out.

I’m thankful for my hands; their age spots, like a tree’s rings telling the story of years spent holding and touching. For feet that carry me, moving ever forward. For the rush of endorphins surging through my bloodstream during exercise, my heart a steady drum, beating the never-ending rhythm: I’m alive, I’m alive, I’m alive.

I count my blessings out loud

I’m thankful for my mind, my intellect, and the ability to reason. For my sense of humor and the personality that’s uniquely me. And for maturity and evolution, that I’ve traveled the roads bringing me where I am today.

I’m thankful for money enough to pay my bills. For water and electricity, for heat in the winter and air conditioning in the summer, for appliances and furniture and clothes. For insurance and medical care and pharmaceuticals. For technology that makes life easier and more fun. For reliable transportation that won’t leave me stranded. For a full tank of gas.

I’m thankful for connections that reach across distances: a Facebook message from my son, a sweet text from my daughter, a phone call from my best friend far away. For the love of my parents and brothers and sisters spread all over the country. For plane tickets. For cheesy peas and cinnamon rolls made from my mother’s recipes. For tradition.

I’m thankful for the million things money can’t buy, for a mother who loved me ferociously and without restraint, who remains a part of me I cannot separate, and whose lilting voice I hear in my head.

The meaning of life: to give life meaning

For my mother-in-law, gone two years now, and the memories of her unconditional love and acceptance that live on. For my grandson and his new brother coming very soon. For daughters-in-law and gay marriage. For divine love in the universe that I believe will prevail over conflict. Because it must.

I’m thankful for the companionship of my husband, the sudden belly laughs he provokes, and his arms that wrap me up, a fortress. For the sweet sound of my children’s voices, singing loudly from the back seat as I angle the rear-view mirror to glimpse their faces. For their clingy bed-time hugs as I tuck them in. For the words, “I love you, Mama.”

I’m thankful for the glorious sun as I turn my face up, eyes closed, to catch its rays. For our home–the place we go out from and come back to–for the sustenance we find in that shelter, our needs met and nourished. For a meal waiting at the end of a long day, for the contentment of belonging to each other.

Love will prevail over conflict

I’m thankful for my pillow and the bed that cradles my body, formed by the years I’ve slept there, my husband by my side. For the warmth of his calf as my heat-seeking foot finds him. For his arm that instinctively draws me close.

As I go to sleep, I’m thankful for one more day to draw breath.

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· 10:34 am

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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· 10:34 am

Making Tear Soup

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

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

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

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

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

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

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

“Dad’s at PaPa’s, remember?”

“At PaPa’s?”

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

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

“Having dinner?”  She echoes.

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

Sydney clears her throat, then coughs into her elbow.

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

I take a deep breath.  Patience, Lisa.

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

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

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

“Right, honey. MeMe is dead.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Linda Kay Kent,

June 25, 1944  –  September 7, 2013”

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

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

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

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

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

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

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

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October 28, 2013 · 4:27 am

Be Inspired!

Sometimes I feel alone.  Silly, right?  In this big, busy world?  But, for whatever reason I do, at times, feel disconnected.  Or I get caught in the illusion that life is mundane and dreary.  My vision is obscured and I need something outside myself to bring me back; back to the magic of being alive, back to knowing that the magic is in all of us, crackling like electricity between all of us.

What is more magical than art?  Birthed of creativity, aesthetic expression–whether it be classic forms or trending, unique, never-before-seen genres of artistry–speaks straight to my heart and soul. Endless potential exists where technology and imagination collide, and in this information age, the internet gives broad access to that art; humans around the globe can reach out and connect.*  Strangers touching strangers!  It’s astounding, it’s mind-blowing, it’s power-ful.

I’ve put together a page called Inspiration, a random collection of things that have touched me, made me laugh out loud or had me crying in my cornflakes.  Things I’ve found unbearable; things I’ve found unbearably beautiful; things that bring me back to the magic.

Next time you’re feeling alone or maybe just empty, trolling Facebook or Pinterest or playing Candy Crush and it’s just not doing it for you, stop by and get inspired!

 

 

*If you have anything you’d love to share, send it to me and we can spread the magic.

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