Tag Archives: dementia

Rocking Chair Reflection

* This is the first in a three-part series.

I sit in the oak rocker, a green, crocheted afghan cushioning my back. It’s too hot now, this time of year, for the afghan to provide warmth. The warmth Mom needs is outside, only we, she is not outside.

As a matter of fact, it was Mom’s travel outside of her care home into the tranquil courtyard that was her undoing. The years I worked to train Mom’s muscle memory or retrain it when necessary, to remember she is free to wander outside. The many Springs whenever the temperature rose above 68 I coaxed her outside. To remind her of that first kiss of summer yet to come. The times I overworked her in PT to get her walking again, so she could easily stroll outside with no hall monitor again, once her taut little legs could handle the weight of her belly and the direction of her mind. The times she cussed me out.

And finally, it was Mom, free, outside, toddling along the sidewalk, possibly another resident in her path or possibly they were walking hand in hand or arm in arm without the other one aware, and one pull or push in the wrong direction.

Both fell. One landed in the mulch. Mom landed on the rocks. On her hip.

The hip fractured.

Then, a flurry of calls from the care home, and my pleas for the ER doctor to wait to prod Mom until I arrived so I could discharge her from hospital duty. “She is DNR/CC,” I say over and over. “DNR/CC,” I say again as I pass through hospital corridors on a Friday night, with plenty of other patients who should be the same.

Finally, transport arrives so we can leave again. So I can take Mom home. To her home, a place that’s been her home with people who love her in ways I can’t possibly comprehend.

In Mom’s room, her rocker is my stead, my captain’s perch, widow’s walk, the place where I wait and rock and imagine my mother rocking me in this chair, though I don’t know for certain how old the chair is. Perhaps it came along when my younger sisters were born. I sold off my baby rocking chair after I moved back from Oregon. Sadly, I wasn’t planning for more children. Had the rocker been a sleek model such as this, with curves in the right places, but not extra butt room, I might have kept mine.

And now, I rock and wait. Will Mom cry out when she twists her body? Will she wake up and smile and make my day? I collapse into the curve of this chair, as if absorbing and resting from the many miles Mom and I have traveled together while she has lived here. I tell Mark, “I don’t want to remember Mom like this.” Curled up, possibly in a pain that she cannot articulate. But honestly, the hours she and I have spent together have erased the hours in my younger years when my memory might recall a different Mom. Our time together in the past six years has been compressed into moments, the good ones, the hard ones, everything in between. If I string together all those moments, I might have a grand day, at least.

Mom and Annette - CheeringThe nurse was just in. She’s new. She mentioned the pictures of Mom and I hanging Arden, taken during a Cheering for Charity event. Mom was joyful that day and thus I was too. The photographer captured that joy. Of course, I recall how Mom loved my husbands, my little boy, the girls now mine, our trip to Italy. Those moments were important. But these times are different. These moments are extraordinary because they are simple, fleeting.

Ah, I’m a woman that’s been clear around the world in my rocking chair, and I tell you we all get surprises now and then. – Eudora Welty

As I sit and feed Mom, I imagine what I looked like, sick in bed, home from school on days when she stirred up my favorite “get better” concoction – an egg, beaten, with sugar and vanilla. It was an old Italian thing, she told me, and, a long while back, I found a book with a similar description. Some days, I still mix up the concoction for myself, for the memory, not for the ailment or relief.

I rock and rock and rock. Its only 11 a.m. How will I fill my next hours, when they were once filled with our strolls outside? Mom looks like Dr. Dre wearing Beats headphones, listening to Sinatra off my iPhone because I can’t stand the voice anymore off her CD player and I know his voice keeps her calm.

I made the decision today to move forward with hospice for Mom – for comfort care – instead of surgery for a fractured hip. It’s not end of life care, I repeat to siblings and friends. There is a difference. Will my mother’s life be shortened now that she fell? Perhaps not anymore than if she hadn’t. Will she be comfortable in the Cadillac of wheelchairs and hospital beds? Probably so. She was already napping plenty. Still, it’s hard to say no. No, to more surgery or medical intervention.

Her body is worn down from being worn down.

Mom is snoring now, like a jackhammer during the construction going on near my home. I am glad I am not at home today, because the sunny weather would have brought all sorts of construction trucks to the street and driven me insane.

Mom’s room is near the TV room. I hear Dorothy’s voice in the Wizard Oz. It’s the scene where Dorothy first encounters the wicked witch. I used to crouch behind the couch whenever I sat to watch the show as a youngster. Or wrap my arms around my mother – and shut my eyes.

And here she lies before me, sometimes snoring, sometimes wide-eyed. Mom’s not said much but offered a few smiles and stroked my hair. I know she knows I’m here.

“I’m here,” I remind her out loud. “We’ll get through this together.”

“We’re off the see the wizard,” the troupe’s tune drifts in from the other room. Someone just turned up the volume or fixed the TV to raise the volume higher.

We’ve always been on a yellow brick road to see the wizard, Mom and I. At times we have been each other’s Dorothy, or the good witches and bad. We’ve been the lion filled with fear, the scattered-brain scarecrow, and the tin man looking for love. Yes, even the lollipop kids.

And now we have arrived at a point in our journey when Toto tugs back the green curtain.

But Mom never needed the Wizard to pull the levers nor Glinda, the Good Witch, to magically transfer the slippers to her. She knows the way. I just have to listen to her, for once in my life, and let Mom make her way home.

I’ll be in the rocker, Mom, waiting.

 

* This is the first in a three-part series.

 

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I Want the Frim Fram Sauce: Carrying Mom’s Music

Standing in the bathroom, notes of classical music grating on my nerves, I brushed my teeth after a visit with my mother, swaying and humming to a different tune.

“I want the frim fram sauce with the Ausen fay /With chafafa on the side” 

My niece emulated Pink. My son obsessed over the Chainsmokers and my daughter, Cheryl, stalked The Mountain Goats. Friends Nic and Em insisted on queuing up Neutral Milk Hotel. Even my husband had his favorites, the latest a pianist from the CSO, Jeffrey Kahane, and he cranked the classical music loud as ever while I took a shower, immersed in the sounds of an Olympic skating competition.

IMG-6294For me, I chose the Classics. The music of my mother.

But my route to the standards wasn’t straight. It was more like learning the steps to the chromatic scales.

I belonged the generation whose fingers were forced to march through the rigors of Bach, Beethoven, and Brahms at the mercy of piano teachers who rapped knuckles with wooden rulers or lived alone in homes where broccoli burned on the stove.

And I did so at the beck and call of John W. Schaum piano books, beginning with the Pre-A Green Book.

Then, if luck or practice, or Mrs. Scutt or Mrs. Bacon had their way, I was invited to master the piano utilizing the lessons presented in the A – Red book.

images-1I was a quick learner, mostly because I wanted to advance fast enough to be through with old John and my lessons. I tickled my way through the beginner books and soon was assigned the red book. And each week, I might receive a check or check-plus on my level of skill in mastering the masters and move on to the C – Purple Book or D – Orange.

I also bored easily.

One day, I discovered my older sister, Laura, had acquired a new piano book from the Driscoll Music Store down on Broadway in Lorain. The book was a combination of Broadway and jazz favorites from the 1950s and 60s. I seethed. Laura had been assigned more contemporary songs to conquer. Laura was a lefty and I would not deny she had been gifted with a bit more artistically than I had. Still, what my older sister possessed, I wanted for myself.

I picked up the book, As Time Goes By, with a rose centered on its cover, flipped it open, and plunked out the melodies to A Time for Us, The Impossible Dream, Moon River, Autumn Leaves, Jean, Jean. Parsley, Sage, Rosemary and Thyme, and Misty. I memorized the words that accompanied the melodies. Because the lyrices were there to learn.

When my mother heard me play, she tossed her dust rag on the floor, joined me on the piano bench, and sang along. She would pop out a few notes, or the whole song if I let her. Nervous around Mom or anyone else, I fumbled over notes or apologized, saying, “Sorry, Mom. Let’s start over.” It was a maxim we shared, one that captured our relationship succinctly then, and now.

Mom rearranged the furniture often in our home on Lincoln Street. Over time, she had the piano wheeled from the sea-foam green, sunlit living room to the high-traffic family room. She assumed one of her children would play the piano more frequently.

I played less. I relished the feel of the vacant, sea-foam green living room, alone, with an audience only I could identify. And, I didn’t want my mother’s singing to remind me of my own mismatched voice and how I couldn’t reach the nuance of the lyrics she crooned.

I had grown up and moved on to other pursuits. After junior high, I allowed my skills to lapse.

The book lay crushed beneath the Schwaum collections, and flute and trumpet sheet music, in the bottom of the piano bench, untouched for years.

During my first marriage, I acquired a piano of my own from Aunt Lynne. I asked Mom’s permission to keep the piano book of standards. My fingers soon danced again over A Time for Us.

The piano was forced into storage when I moved to Oregon. I broke the piano out of storage when I moved back to Loveland and installed it, of all places, in the living room, where the bright sunlight of the early morning streamed into another green room, this one a warm khaki, and enticed me to play from that same classic book, rediscovered beneath other musical failings.

IMG-6292Twenty years later, I found myself at my mother’s dementia care home where extracurricular activities (everything is extracurricular after age 90) centered on popular music, movies, and books from my mother’s era.

Recently, I read a social media post predicting what genre of music will be playing, when baby boomers, or post-boomers, like myself, lived in community with others once more.

One commenter predicted Dylan. And I had to break the sad news. Dylan was already on the playlists. Not because of the onslaught of boomers, but because of a few early-age Alzheimer’s residents who deserved to hear their music.

During the most recent music event at Arden Courts, a group called Wild Honey was contracted to play. Several times, I noticed the base player watching me sing along while he plucked away at his strings. I retreated into myself, embarrassed. He probably wondered what kind of 50-year-old knew the lyrics to those songs, Our Love is Here to Stay, April in Paris, by heart and whispered them into her mother’s good ear? What kind of music life did she have?

I wanted to answer Kesha. Or some EDM superstar like Odesza. Or The National. They’re from Cincinnati. Yes, even Neutral Milk Hotel.

But the answer was, I had none. Other than that acoustic space inhabited by memories of my mother’s music.

My children know to fire up The Boss when my time comes. For now, I work my way through lengthy Ella Fitzgerald or Frank Sinatra discographies and sing a few Nina Simone songs with Helen, another resident.

I departed Arden Courts with a little earworm or two wiggling around in my head throughout the rest of the day.

Like a spy, my mother and her first loves somehow planted those notes.

They are the seeds of Mom’s life that I carry now, along with the frim fram sauce with the Ausen fay with chafafa on the side.

I don’t want fish cakes and rye bread
You heard what I said
Waiter, please serve mine fried
I want the frim fram sauce with the Ausen fay
With chafafa on the side

Now if you don’t have it just bring me a cheque for the water.

– Visit the Nat King Cole video.

 

 

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In Her (Virtual) Shoes

IMG-5963Rubbing hands in the drafty Roh’s Café, my fellow writers scribbled across blank pages, responding to a prompt related to Connor Oberst’s Desert Island Questionnaire song.

I wrote down shoes.

My answer is always shoes. A byproduct of the trade, leftover from the family’s days in the business.

I would abscond with the perfect pair of sensible, but fashionable shoes. Flip flops I could sew out of animal skins. Boots, too. But those fuchsia suede ankle booties? I would escape with them.

A new writer to our circle offered a vastly different response. Russell wrote, “I’ve been thinking about VR in geriatric care…..how you experience reality….how deep can someone be immersed.”

And there we sat, awed by the magical nature of writing prompts. Magical in that his words didn’t surprise me. I too had been thinking about virtual reality, in particular, Mom’s, after observing her earlier in the day. Stranded as she was on another shore, I imagine Mom would carry only memories to a deserted isle.

I had been researching VR in the dementia field for a while, ordering Google Cardboard goggles to play around with the notion. In digging around through various site visits, I discovered the way back. Actually, The Wayback.

In the dementia field, social workers believe triggering memories of joy in one’s life can translate to a sense of peace in the present moment. Many care homes and family members already use various props and pictures to do so. Virtual reality extends that practice.

According to The Wayback website, the project’s mission “will be a series of virtual reality films that faithfully recreate popular, positive moments from our collective past – taking the viewer back to a familiar time and immersing them fully for a few minutes using Virtual Reality.”

Based in England, where most dementia work has been breaking ground, the first Wayback film was developed around the Queen’s coronation in 1953. Exact scenes have been recreated and a viewer can explore the entire experience, complete with graphics and sounds, from various angles using VR technology.

Any viewer can watch this film via Youtube on a mobile phone, or through the use of Google Cardboard goggles.

According to one expert, Dr. David Shearer, an expert on Dementia Care Matters and host of a TV series, Dementiaville,”We are all made up of our emotional memories. As we experience dementia our world seems to shrink – holding on to who we were is a way to hold on to who we are now. Anything that offers the opportunity to connect and be reached is strongly welcomed.”

The overall aim of the project is to create a series of films from various decades that speak to the lifetimes of those experiencing dementia.

When Russell read his words in the café, my world of shoes and his of VR collided across the community table. Long after our writing circle departed for our warmer cars, I reached out to Russell and shared with him about The Wayback.

Russell responded, “WOW. That article encapsulates a lot of my curiosities and hopes about VR. The idea of reliving something to jog memories, etc. I have a more morbid fascination with it too — this idea of losing oneself in VR…what weird psychological issues could arise if someone who is wheelchair-bound or something spent 12 hours completely mobile in VR, then had to come back to their not-so-spry body in reality? Would it be overall beneficial for end of life care? Or would it be depressing to have the option of VR but with the requirement of coming back to your real body?”

In my head, I too often shuffled through other sensational salves for dementia, such as The Wayback or Russell’s notions of losing oneself.

Through the Youtube app, I had watched the Wayback film and a few frolicking dolphin clips all with the Google Cardboard. I grasped the fascination. And I struck upon an idea that expanded on the vision of The Wayback.

When my husband and I toured Havana, Cuba, our itinerary included a social program visit to the Art and Film Institute. We learned how a stop-motion film was made. It was a dreary, but pointed, film about domestic abuse and the film won several awards. A stop-motion film is created via the building of a set comprised of objects and characters, animating the objects and characters one frame at time, and moving and filming them again. It is a long, pain-staking process.

That process tied into The Wayback. And to Mom.

Could I reconstruct a life from scraps of my mother’s belongings? I possessed Mom’s Dumas cashmere coat and her black purse with gold clasp, some old broaches and Christmas tree earrings, several of her Christmas decorations. I also retained her crème ceramic bowl in which she mixed her cookie dough, her flour sifter that still has a speck of flour from 2010 on it, and her cook book collection that ranged from the Joy of Cooking to The New Zucchini Cookbook (she had two). To that end, in my pantry, I stored several of her metal cake molds. Who doesn’t remember Mom’s bunny cakes? She baked shaped cakes for all of us, mine without the coconut fur. She baked a cake every year for Davis, in shapes ranging from Scooby Doo to Bob the Tomato and Larry the Cucumber (Veggie Tales).

With Mom’s personal pictures and objects, could I recreate an hour out of a day in 1975, when my mother would relish the quiet while all were at school and she turned out cookies by the dozen?

Or a significant Christmas, one in which Dad engineered his trains to run beneath the ping pong table or hung the Christmas lights in a straight line, or all Mom’s kids were at her home, having schlepped their bags from the far corners of Ohio or Oregon. Or an evening with all the grandchildren present and superimposed.

Could I reconstruct the two-story colonial home on Lincoln Street, the home that filled Mom with pride? Would she wilt under the weight of the expectation of having to clean it? Through graphics, could I rebuild the ranch on Ridgeland Drive complete with flooded basement, where Mom always proclaimed, as a family, we were happier because we were closer together if happiness meant three girls housed in one bedroom? Would she wait at the back door with Swiss Miss hot chocolate, after we sledded down the hills of the sanitarium?

Through the charmed viewfinder, Mom would be encapsulated in the life she lived. Would she find comfort there? Could she return from that moment to the one right in front of her, where she does not recognize those around her, and still find joy? How long would that joy last? And what would three minutes of stop-motion animation be worth?

Playing that line of thinking out to its bitter end, would the project travel back further in time before Mom chose Dad, or chose marriage over work. Would she have chosen otherwise? Would this leave her with a pang of regret to transport into the present? Would that be considered mind manipulation and who then becomes the POA for a mother’s memory?

Imagine an app where I could view that film of Mom’s time, as personal as a pair of worn shoes, form fitting, evidence of her life and style choices, maybe a chipped heel in a nod to journeys taken. A film that responded to a memory Mom would have carried to a desert isle, more precious than a pair of shoes.

Say that you were stranded on a desert island…

Shoes would still be my answer only because I’d name the VR app InMyShoes. But I would skip the fuchsia booties, maybe kill a rabbit or snake and sew myself a pair of sandals. And replay over and over Mom’s memories stowed away on that sandy shore.

 

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Cheering on Lives

68718I entered Arden Courts, arms loaded with a box of cookies. High-pitched vocals echoed through the hallways and I cringed.

From down the hall, a familiar voice rang out. “Your mom’s down here.” It was Becky, the activities director.

I nodded her direction. “Ok. I’ll just put the cookies away (meaning out of sight of lurking cookie monsters) and come find Mom.” I shuddered to shake off the shrill, but pleasing, notes drifting alongside me as I coursed through the hallways.

I let one of the caregivers know about the cookies’ whereabouts and sauntered towards the community center. As I closed in, the singing voices sounded more like, well, cheerleaders. Wasn’t it way too early in the day and my coffee intake for cheerleading?

I approached the doorway, glancing around the room for signs of Mom. At first, my eyes skipped over my own mother because she was squirming in a wheelchair. Probably to move her more effectively for the music show.

I entered the room from the rear. Blood pulsed through my ears as they were again struck by the voices of the woman crooning and carousing with the crowd of residents who merengued with shakers and tambourines to the tunes. A chorus of residents hollered, “You’ve got the cutest little, baby face.”

For a spell, I watched this spectacle and Mom from back of the room. Like the bouncing ball over top of old songs on TV, Mom’s eyes followed the bopping women around a room cramped with wheelchairs and restless residents.

Finally, the two blonde-haired women and their accompanist, one female singer and one male, stopped to catch their breath.

“Hi, Mom,” I whispered in her ear. I kneeled down and lifted her hands to help shake the plastic maracas she held. I couldn’t tell Mom to do so, because, well, she wouldn’t.

Hints of Me and My Gal floated around the room. I couldn’t move, mesmerized by the women and their accompanists with such chipper manners and the thinnest layer of makeup to enhance the joy they exuded and extracted. The two lead singers’ faces gleamed while they danced around in blacks tights and a purple sleeveless athletic shirt. They also wore something else. Contagious smiles.

Becky leaned in to me. “They’re former Ben-Gals. Priscilla, and Julie helped, started this group and they’ll be coming the next few weeks.”

Another resident wandered off and a chair opened up next to Mom. Settled into an oversized- transport chair, Mom wasn’t likely to meander. Each time Julie or Priscilla patted Mom’s arm or passed her by while dancing to Ain’t She Sweet, Mom’s hazel eyes grew brighter. She lifted her eyebrows as if in disbelief.

Over the course of an hour, the women met Mom’s gaze or that of the other residents with an intensity I cannot replicate. One ran her hands along the sleeve of Mom’s bejeweled shirt and Mom caressed the performer’s glistening cheek in return.

During the next song, Priscilla stood before Mom, holding and swinging hands. She was the true founder of Cheering for Charity. Priscilla’s mother passed away in 2008 from Alzheimer’s complications and Priscilla founded the organization shortly thereafter, to bring more life into the world of those with dementia or living in other care homes.

Still locking arms with Mom, Priscilla spoke her words to me. “I see my mom everywhere.”

I nodded. Her work had become about her mother’s life. That mantra I understood.

The pianist played a few notes, prodding the audience towards the next tune. “Shine on, Harvest Moon,” she serenaded the residents and the velvety tones covered the room in warmth. Then, I Want A Girl (Just Like The Girl That Married Dear Old Dad) followed.

Peggy, a petite and ebullient resident, stood from her chair and tugged at Julie’s sleeve. “Do you want to see the gal that married dear old dad?” Her hands shook. From between two tattered cards carried in her purse (many women carried purses), she pulled out an old-fashioned, airbrushed photo of her mother.

“She’s beautiful. She looks just like you,” Julie directed back.

Peggy beamed. “Everyone says that.”

I bent over the photo. “What was your mother’s name?”

“Margaret. Just like me.” Her chubby cheeks grew round.

After the close of the event, Leah, the pianist, handed me a business card. Later, I sent the group an email in appreciation for their gift of goodwill: My mother is not one to follow directions, so she won’t shake a tambourine for instance, if you tell her to, but I discerned, from her smile, that she found your presence a light in the midst of her sometimes dark mind.

I meant it. Theirs had been the rare entertainment with exuberant voices, a hop in their steps, glowing smiles, and a compassionate touch.

Only an hour earlier, I had sat in the parking lot, hands glued to the my steering wheel, debating whether or not to listen to the president’s press conference about the mass shooting in Las Vegas. My heart clamped down to prevent the flow of news. I exited the car and trudged into Arden Courts.

When I departed 90 minutes later, I faced the bleakness again, this time with more strength. There had been a catharsis in those moments with the cheerleaders. I used that term with the utmost respect.

I had given up cheerleading in ninth grade to tryout for volleyball (it was a win-win for many folks). Throughout the morning performance of Cheering for Charity, I had maneuvered my thoughts away from Las Vegas and towards my junior high cheerleading days. Getting stuck grabbing a basketball net while another cheerleader walked out from beneath me, and our seventh grade history teacher who tried to helped me down. Skirts flipped up by the boys seated behind me in Spanish class. The fact I could never do the splits, not all the way.

Many ah-ha moments often washed over me whenever I left my mother. Pressing the ignition button with my index finger, I hummed to myself. “I’ll be loving you, always. Always.” I tried to mimic Julie’s sweet tone. The memory of the glow circling my mother’s face lit up the interior of my car.

That particular day, the women had not only cheered on Mom to find a way back to the youthful lightness of her days. The group had cheered on the ever-so-small movements in the midst of a horrific maelstrom occurring 2,000 miles away. For forty-five minutes, I too had forgotten my despondence and joined in the chorus of cheering on lives.

AJW, 10/3/17

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The Sacrament of Cookies

Cookies for Arden flashed on my calendar that Friday. It was time again for the weekly rite.

IMG-3186Arden is my mother’s home. Her care home. Mom has lived there for five years, just the past week. She lives amongst sixty-some residents who experience some form of dementia or memory altering condition. Mom has outlasted at least a third of the residents who succumbed to death, departed through lack of funds and or the need for a environment more suited to a particular condition. However, it is unlikely Mom will beat out Miss M., currently careening into her hundreds.

Five years was an eternity to evaluate the relationship I had to my mother’s disease. But the span offered me the gift of not only loving and caring for Mom, but of embracing other residents and caregivers.

It was on a different Friday, a year or so ago, the notion of “Cookies for Arden” was mixed, rolled, baked, frosted, and served.

I was departing the city for the weekend. The cookies were essentially a bribe to the caregivers to watch over Mom for the weekend (as if they didn’t already do that with such care).

Regina, an older caregiver, was delighted when I produced the sweet bounty of colorful tea cookies boxed up from Busken. Jillian, Mom’s most consistent caregiver, groaned. She had been trying to lose weight, despite chasing after the ever-active residents and her obligation to feed, clothe, and bath 15 women and men.

When I held out the box, Mom’s hand aimed for one on top. She grabbed several cookies, denting the swirled frosting on each.

Another resident, B., who was charming and cunning all in one instant, beckoned me towards her. “Hey, I’ll pay you if you bring me in a full box for myself.”

“And they better be Busken. Those Servatti cookies are Italian and they’re not made with the same butter as Busken.

B. had insulted a whole forest of my family trees and was clearly wrong in her presumption that Servatti cookies were made by Italians. The bakery was named after a cafe where the cookies were sold in Munster, Germany, in a location near the Church of St. Servatii, an Italian saint. And, the cookies were made by Germans. But B. also made a point. I, too, relished in the Busken cookies over Servatii’s.

Astounded by such reception, I erratically continued the tradition of bringing in the cookies. Always on a Friday, but not every week.

When I finally typed the entry Cookies for Arden in my calendar, I found that I routinely fulfilled my duties.

The same duty my mother once fulfilled on a September day, in 1994, for my marriage to Devin. My mother baked four of my favorite varieties of her Italian cookies. Pizzelles, rolled Italian cookies, nutroll, nut horns. She obsessively placed them in old May Company shirt boxes layered with waxed paper, and transported the goods from northern Ohio to Cincinnati in the back of Dad’s suburban. My entire family relayed the cargo across Fountain Square through Oktoberfest to our wedding reception at the Banker’s Club, ten stories above.

No image better signified Mom’s dedication to cookies as consecration than that of white department store boxes filled with cookies, bouncing along the heads of siblings towards the delicacies’ eventual consumption that night.

No matter where I am in the world – at home with the dog, in Washington Park, in Oregon or northern Ohio, if its Friday, Cookies for Arden pops up on my phone screen. And I smile.

On the most recent Friday, the cue flickered on my screen while I was in the midst of a neighborhood walk through West Price Hill.

“Yes, yes,” I spoke out loud to the phone. “I got it.”

Hours after my shower, I stopped at Busken Bakery, only to find the bakery cases emptied. I was stupefied. “Where are all the tea cookies, where are the sprinkled ones?”

The clerk offered me a morsel of relief. “Oh don’t worry. They’re in the back. We got wiped out today. It was back to school week.”

In a matter of minutes, the clerk loaded up a box with piles of red, blue, white and sprinkled mounds of butter. (I do wonder who decides on the color scheme each week).

When I arrived at Arden, the receptionist spotted the gold container with a plastic window into the world of delight. “It must be Friday.”

I lifted up the box with a broad grin on my face. “You bet.”

As I entered the kitchen of Mom’s hallway, many of the women were still seated around their breakfast table, including Mom.

“Hello, girls.” I announced. “I’ve got cookies.

Miss J., the other Miss J., lit up at the word, “cookie.”

I sauntered over to Miss R., relegated to a corner table filled with wooden abacus like toys, and she took a pink one. “Thank you,” she mumbled and her visage returned to a blank stare.

Miss M., known for crying without tears ( which may be a condition known as pseudobulbar), accepted a green one from me. However, not even cookies could stop someone from overcoming that condition.

Again, Miss B. proposed payment for the entire collection. I politely declined, though she was good for her word and the money.

FullSizeRender (60)Mom finally acknowledged my presence – and that of the cookies. She waved her hands in the air. “Hey, hey.”

I inched towards Mom and presented to her the box resplendent with rainbows. Mom fingered three of them, placed the first one wholly in her mouth, and clasped the other two, again crushing the swirl of icing between her fingers.

I stashed the remainder on top of the microwave, where all the staffers would know where to look for the prize. The hiding place was like the cookie drawer in our home on Lincoln Street. But Mom never stored her good cookies there, only the packaged ones. The good cookies were kept locked away in old Charles’ Chips cans, like the sacramental offering they were.

At the last minute, I swiped a cookie for myself, to join in the ceremony of cookies. It was the closest I came to receiving a blessing that morning.

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Organizing a Mind – Writing Our Lives as Caregivers Workshop

Writing Our Lives as Caregivers 8-2017 (1) (1)-page-001When my mother began her slow waltz with dementia, I was living in southern Ohio, dancing in new love and blending families. Mom still resided up north, near Cleveland. Each time I visited, I had witnessed various versions of a mom I didn’t recognize. Each time I drove back to Cincinnati, I was steeped in the shadows of what was soon becoming, or had already become, the darkening of her memory.

The story of how she got from there to here has been the subject of poems, blogs and novels. But the narrative of writing as a tool to forge a new relationship with my mother is a story that is boundless.

Not long after I accepted (maybe not really) Mom’s stage in life, I had been listening to a podcast about an Alzheimer’s writing circle, begun by a well-known psychologist, Dr. Alan Dienstag, and famous novelist/playwright, Don DeLillo. I was prompted to undertake the same.

One day, sipping coffee with Leigh, a good friend from Loveland, I mentioned the prospect. She dropped a hint into our conversation.” If you ever do that, let me know. I might have some time to help.”

Thus was born Found Voices, a writing circle for individuals with mild to moderate cognitive loss who lived at the Alois Alzheimer’s Center in Cincinnati, a facility renowned for their approach in caring for residents, and also renowned for their costs.

The program director not only welcomed my pilot program. She connected us to the executive director, who promptly paid us well for such work. Little did either know, at the time, I had proposed the program to alleviate guilt I was accumulating, while not traveling the miles to see Mom.

For three years, Leigh and I plotted and planned out themes for our circle: Flying and planes. Summer. School. Baseball. Home. Love.

The participants who were with us those three years became dear to us. Mary Lou, Willhemma, Betty. Dotti. We embraced their lives and their hearts. Whatever life those residents had left to give, they gave their all.

That work that propelled me forward to write about my own mother. (www.findyouinthesun.com) That work became the seed in a relationship with Pauletta Hansel, Cincinnati’s Poet Laureate, whose own mother experienced dementia. And the two of us arrived simultaneously at the intersection of art and life. We have decided to stay there a while.

Last summer and winter, through the Alzheimer’s Association of Greater Cincinnati, we offered sessions for caregivers to write and share their musings and mutterings about their loved one experiencing Alzheimer’s or dementia. Or to write and share about the struggle in their own lives, as they contemplate a future without their loved one or a future that might closely resemble that of their mother’s, like I often do.

The poem below was excerpted from Pauletta’s blog, from our summer workshop.

The Alzheimer’s Association of Cincinnati has been enthusiastic in their support of our work. We will offer three caregiver workshops, two in coordination with the Memories in the Making program, and one trial run with professional caregivers, because they too have stories to tell, especially when they sit in for a family who can’t or won’t.

FullSizeRender (34)I have made a life out of my mother’s life. Not her past one, or ones, though I don’t know if she has nine or not. But the life I made has been created from her present one. It’s not the life I planned for either of us. My mother was the extraordinary organizer. She would have never tolerated an unorganized mind. But she tolerates me. And in the interim, I help others organize their mind and their love.

FREE workshops August 12, October 21 & February 10th. Sessions begin at 9 a.m. Each session is hosted at a different venue. Check the website for details.

 

This poem is a weaving together of snippets of writing from the participants of Cincinnati Poet Laureate Pauletta Hansel’s workshop at the Alzheimer’s Association of Greater Cincinnati on July 16, 2016. Innumerable residents of Cincinnati are caring for loved ones with dementia —mothers, fathers, husbands, wives. Their experiences of tenderness and loss are all too often untold. Credit to Pauletta Hansel for the weaving. Read more.
For As Long As We Can: Writing our Lives as Caregivers

There is much more hurting than healing
in our lives right now.
An incredible sadness.
Robbed of all this time,
many years, with my mother.
I let go of the colorful gal I once knew;
now her words cut through me like a machete,
leave a hemorrhage like no other.
All this before I even sit down.
I want so desperately to believe
God has a miracle for my dad,
for my beautiful Gina, in beautiful Bermuda—
how I would love to take her again,
away from the tiny world she knows
—and the bitterness of that impossibility.

I hold to every word, to every syllable,
to every streak of black
remaining in Mom’s soft white hair.
I know I am still her baby girl.
I cling to my old memories.
I don’t want it to change, but it does.
But then, a conversation—mother and daughter.
Mom hunched her shoulders
and walked in a silly way, making me laugh.
She doesn’t need that jacket on,
but she’ll wear it anyway,
singing “76 Trombones” and I join in.
It takes her a moment to connect
my place in her room
with my place in her life.
I know she is in there.
She looked in my eyes; I let her love me.
Mom was back,
but not for long.
The touch of your hand—unnerving,
unbounded by time.
At Mirror Lake in Eden Park
the air had cleared,
the colors of sunset filled the western sky.
Tiny blue gills swirled alone in lazy Van Gogh circles.
Heads together, giggling like conspirators
and wishing for more.
I am still comforted by your touch.
Moments—come and gone—
that would not have been
had we not been present.
Engulfing moments unborn, unknown by us.
A salve to put on the wounds part—
the baggage of the day
and my beat-up body,
the parts that broke,
under the pressure of loneliness.
I breathe deep until the next time;
I sink into the car
and think about doing it again tomorrow.
The contrast—the leaving,
the spent memories so different,
so contrary, so final.
Or maybe not final,
maybe this too will change.
I hold her strength, yet I cannot find her.
The joy we had, the hope
and promise of things to come.
I want to believe.
I cling to these prayerful words:
Relax, you are safe.
I will be here for you—not forever,
but for as long as I can.

From participants in Writing Our Lives as Caregivers
with Pauletta Hansel, Cincinnati Poet Laureate, and Annette Januzzi Wick
Alzheimer’s Association of Greater Cincinnati

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What Is a Weekend…At a Memory Care Home?

IMG_2461I missed the Luau Party date on Arden Courts’ activities calendar. So, I was surprised when at Mom’s on a Tuesday to find a luau was to occur later, complete with sweet and sour meatballs, tiki cups, hula dancing and steel drums. Sadly, I could not partake. I wished Arden would have hosted the event on a Saturday or Sunday, despite the fact I had been inconsistent in my attendance on weekends.

Arden Courts was not responsible for my social life. I handled that fairly well. But they were responsible for Mom’s, and by proxy, that meant me too.

I prided myself in my near-perfect attendance for major events that occurred at Arden Courts. With a flexible schedule and even more flexible husband, I have attended Teddy Bear teas, senior proms, Valentine’s Day dances, chili cook-offs (a risky proposition) and Catholic holiday masses.

My schedule with Mom was somewhat regular, somewhat not, and somewhat dependent on the weather. I charted my time based on if I could urge her outside or not, and how long one of us could withstand the stinky heat. Then, when winter blew in, as if Mom’s disposition was not already thrown into disarray, doors locked and Mom and I were stuck staring at a sun that clearly quit its job in December, January and February.

When Mom first moved to Arden Courts, I diligently attended to her every other day. On weekends, I dropped in twice – most weekends were only two days long. Thus, I had tried out all the activities. I actually watched Cleveland Browns-Cincinnati Bengals football games, complete with popcorn, in the community room with Mom because it was less painful than to view the game with my husband and son, and their pithy Cleveland jokes running in the background.

Family members and friends struggled with ways to stay engaged with loved ones, but I didn’t. I loved singing with the Merry Moores because of their corny humor. I loved Chaplain Geoff and his booming voice. I relished in Friday mornings, because the activity was like Jazzercise, only from the seated position. I called it a Dance Party, but Arden Courts called it exercise. Mom never, NEVER, moved an inch if she didn’t want to, so swinging to Jerry Lee Lewis, just to get her heart rate up, was not going to happen. Still, I was there.

Later, I started missing days on the weekend. Then, I skipped a full weekend, but showed up Monday, Tuesday, Wednesday, out of guilt, obligation and the fact that I had missed out on activities like the luau or race car simulations or Irish dancing.

And I told myself, “Its OK. You’re working too.” I secretly confessed my sins to my rearview mirror, instead of waiting for the priest to arrive at Catholic mass at Arden.

I missed one Mother’s Day. Possibly Easter. A Fourth of July (read more about why that date was important). One Christmas Eve (Try taking out an 80 something-year-old in southern Ohio sleet and see if your loved one speaks to you again.)

Mom didn’t know one day from the next. She didn’t know if she missed hula-hoop class, for which she might be thankful. Or if she skipped communion, which the Eucharist tended to stick in her throat since she had been prescribed a soft mechanical diet.

But I knew. And I knew Mom had never missed a track meet of mine. She postponed cancer treatments to travel to Oregon when Davis was born. Mom gave up weeks to help during my first husband’s cancer diagnosis and in my next days as single mother.

She had a long record of showing up. “Wherever there was the need,” she said. That included toting six-dozen, neatly-boxed Italian cookies to Cincinnati for my first wedding reception, and a repeat of that Herculean effort for reception number two. She knew how to show up. And she filled that space with who she was.

These days, Mom and I have to get creative in how we filled time. Her hourglass rotated unceasingly, as if before the sands of time ran out, the glass automatically flipped when neither of us were looking.

download-2In those moments, time became seamless and nearly weightless, as a scene from Downton Abbey with Violet Crawley, Dowager Countess of Grantham, played in my mind, complete with British accent.

At the dinner table, Matthew Crawley is speaking about a job.

His father-in-law, Robert Crawley, Earl of Grantham, is incredulous. “You do know I mean to involve you in the running of the estate?”

“There are plenty of hours in the day,” Matthew responds. “And of course, I’ll have the weekend.”

The acerbic Viola interjects. “What…is a weekend?”

It was hard to lose hours with Mom, who couldn’t comprehend the dimensions of her space and time. But the sands of time kept rotating, and it was only silly humans who attached actual schedules to our time to love.

It was a Friday. It had been three days since my last visit. Mom was seated outside, in the shade. I tugged at her sleeve and kissed her on the cheek. “Hi, beautiful.”

FullSizeRender (33)Mom shot daggers at me with her hazel eyes, as if accusing me of skipping church on Sunday and daring me to produce a church bulletin with the current date.

Maybe she still knows what is a weekend after all.

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“Baby, You’re a Firework”

(https://findyouinthesun.com/2017/07/06/baby-youre-a-firework)

 

IMG_1680“I’m taking Mom on picnic.” I said to my husband, Mark, who wiped his eyes and blinked at the clock.

It was six a.m. on the Fourth of July.

“But I need your help,” I pleaded to him, plagued by a duty I couldn’t shirk.

Mark mumbled and rolled over until our fluffy dog whacked his tail around in his crate.

I had stopped escorting my mother out of her care home. On a previous escapade, our antics resembled an Abbott and Costello routine as I revolved Mom’s body into a seated position in the car. Our arms in a tangle, I held her at the waist while lifting her leg into the seat well. Mom stared at me with her watery eyes graying around the edges like the soft hair around her temples then fought back with her typical line of questioning. What car? This car? Why way? This way? Which way is this? 

Now, with my husband, Mark, and our daughter, Shannon, I drove Mom from her care home to a nearby community park. Like a tugboat, Mark and I escorted Mom out of the car and along a cracked asphalt path toward a picnic shelter with a roof drooping along the shady side. We were the only park guests other than a teenager who clutched a bulky picnic basket waiting for a dining companion.

As we approached the lineup of picnic tables, I harkened back to my mother’s Fourth of July cookouts.

When my mother insisted on eating outside no matter the humidity, we groaned. Soon, Aunt Joan arrived with baked beans and my siblings and I groaned again. Mom would grill my father about his barbecuing techniques, which always resulted in an added charcoal flavor to the meats and additional wait time. The kids were excused from a table blanketed in gold-checked cloths and instructed to play until called.

Mom’s meals always populated an extra picnic table with a buffet large enough to feed a team of twelve-year-olds. She topped off the spread with traditional angel food cake, frosted with Cool Whip and dotted with blueberries and strawberries to honor the stars and stripes—and her marriage.

Yes, my parent’s wedding anniversary fell on the Fourth of July. Legend had it, my father’s family shoe store closed during the holiday which made the date perfect for a marriage ceremony. As a youngster, I never recognized the Fourth of July as a special day for my parents. Their anniversary was overshadowed by the country’s birthday, neighborhood bike parades, never-ending softball games, and Italian sausage with fennel seeds cooked to a crisp.

As they aged, my parents celebrated by driving the winding road along Lake Erie to buy an ice cream cone at Toft’s Parlor. My mother loved to park with the car’s nose pointed toward the lake. Though Mom couldn’t swim, she was soothed by the endless waves of blue.

Before we sat down to our meager picnic, Shannon wiped the morning dew off the table with disposable wipes from Mom’s supplies. The air was now scented with baby powder and not fresh-cut grass. We unpacked slices of cucumbers, bags of Bing cherries and chocolate chip cookies, and Mom’s cherished peanut butter and jelly sandwich.

Mom singled out the chocolate-chip cookie first, and by habit, picked at whatever food item I deposited on my plate.

I regaled Shannon and Mark with stories about my hometown’s International Festival and parade where my siblings and I ate pierogies, baklava, and stromboli, all in the course of an hour. One year, my older sister, Laura, was crowned Italian Princess, and soon after, Ms. Congeniality.

Mark chewed through his allotted cookie. “How come you didn’t enter?”

I narrowed my gaze. “Who wants to compete with Miss Congeniality?” Besides, I was as far from a princess as any DC Comic character.

Mom nodded along as she consumed her second cookie and crushed the last cherry in her mouth. Her chin, splotched with cherry stain, dropped near the edge of the table and her elbows slipped off the glossy wood paint.

It was time to go.

We reversed course and returned Mom to her nest.

FullSizeRenderSettling her into an armchair with a tufted cushion in a warm corner in the sunroom, I tried to leave. But tears kept me rooted as if they were essential to watering my family tree.

Mom and I had been conjoined for five years. Five years without Dad. She and I had grown together in the way a married couple grew together except I returned to the outside world and she remained in her inner one.

I could finish Mom’s sentences by tone and not knowledge. If we were seated outside within the vicinity of the bird feeder, and dozens of wings flapped around us, Mom pointed to the birds and her voice rose. “Well, on there is something.” I would confirm there was not one, but three cardinals, and noted the addition of a yellow finch.

Mom relished in the lack of activity and stroked my arm. She embraced the summer days not for the rays but because she could touch skin. She slid her fingers up and down my legs, an act which might appear odd to an outsider. But Mom was only admiring the brown skin of her youth.

In five years’ time, I had loved my parents differently. Mom was alive and her breath lived in me. But there was some inexplicable tie that had nothing to do with mothering or daughtering because neither of us had accomplished much in those roles our last five years together, though we hadn’t lacked in trying.

I disengaged my fingers from the ageless beauty in front of me. But Mom grasped my tan arms as if she could feel the warm kisses the sun once planted on my skin.

I straightened up and cradled Mom’s head as she leaned into my soft tank dress and again wove her fingers through mine. My husband and daughter stood behind me and waited a while. I didn’t care. Mom and I had shuffled along too many corridors together for me to rush our goodbyes.

In a flash, I became a conduit for a presence I could not name. The Fourth of July burst through me and filled the moment with fireworks neither Mom nor I could see. But we felt them.

Yeah, we felt them.

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Still Life

Carolina Marches

My life with Mom was not always about Mom’s life.

The day after Memorial Day, she and I strolled outdoors while she was arguably distraught with the landscapers who had left a mess of mulch spread across the sidewalk while sprucing up the garden beds of Arden Courts.

She simultaneously scowled at the young men, while also brandishing her trademark, I’m so sweet, smile.

Then, her eyes locked in on the benches. She marched straight for one in the sun and sat down.

In a little while, Jack wheeled outside to join us. Jack was younger than Mom, was afflicted with Parkinson’s, but recalled Mom’s name and remembered I was her daughter.

We filled our minutes with talk about what constituted the perfect summer day, and also, how to be on the lookout for sunburn. He told a story about his mother, seated on boat for eight hours, who never once considered she might have needed sunscreen and, only later, screeched at the mere touch of her arm.

The activities director joined us, and produced earphones and iShuffles for both Jack and Mom. The implements were part of the Music and Memory program recently instituted at Arden Courts. Mom’s playlist was crammed full of Sinatra, while Jack’s contained Simon and Garfunkel, and there the age difference was apparent.

After the director departed, Jack realized his iShuffle wasn’t working, so he struck up a conversation with me again. Mom’s headphones had been connected to my iPhone, so I let her mind spin on to the tunes on my player while Jack and I conversed.

I must admit to the difficulty of sitting with someone with Parkinson’s. While Jack stumbled over his words, I wanted to jump in and finish his sentence, despite knowing that was wrong, and also frustrating for him. Numerous times, I held back, held my breath and waited for just the right word to come from his mouth and not mine.

FullSizeRender-102The sun’s intensity that morning had been too much for all to bear. I escorted Mom inside to the join the resident cat, and Jack came along, courtesy of the activities director.

As I tried to part ways with both Mom and Jack, Jack asked if I could stay a few more minutes. He had something he wanted to show me. I was already late and promised to track him down when I returned. In hindsight….there was always hindsight.

Jack had been an avid photographer when he was younger and less afflicted. Of all the reasons he offered for his passion, the last two stanzas of the poem stayed with me. Now, Jack and I were forever linked by art.

 

Still Life

He once shot photographs
of marshes in the Carolinas
– before the shaking
and stuttering –
when his hands were steady
and he could capture a still life
instead of leading one.

We are outside
on a sky blue day
breeze whispering in our ears
and the wheels of his chair
roll backwards
into a bed of irises
where the tires are stuck
in a triangular rut.

He asks, Please, help,
and for an instant
his life is immobile
caught in that moment
between harsh cold concrete
and soft landscape green.

Later, I show him a book,
The Art of Ages,
a photographic journey
in black and white
through the 20th century
of people and how they lived,
sometimes in filth,
sometimes in stealth.

I only photograph still life,
he repeats.

He wants his camera back,
won’t mess with a new, old Polaroid,
and wants his computer too.
Maybe his brother will bring it,
but not his son
who he sees every six months.

He wants to know
if I have photos of my mother
when she was younger,
as Mom’s head bobs into her chest
and she snores away
the perfect silence of a summer day.

Some, I tell him. I have some.

I keep mine altogether.
The words sputter from his mouth
as he pushes off toes
and his chair rolls
backwards in time.

I take photographs,
he stammers,
because I get to keep
the life I lived.

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Swipe Left and Right

IMG_0446I swiped left and right between the photos.

No, this was not on Tinder. This was in real life. Mine and hers.

Mood swings were at the top of my most despised moments with Mom. I didn’t hate my mother in that moment. I hated myself because I’ve yet to learn how to adjust to her fluctuations.

But in between those moments, was everything that was life and death.

When Mom was cranky or ornery, my first reaction was always UTI. Bladder infections were common occurrences in individuals experiencing dementia. The infections created moderate to severe changes in disposition. Thus, when Mom’s mood swerved and curved like an Indy race car driver, my first thought was UTI.

True confession. My very first thought is Mom is dehydrated. Then, UTI. And because a UTI left undiagnosed for too long could lead to complications, panic sets in. I track down the nurse, or a caregiver informs me the staff has already told the nurse. Then, we wait on a person whose incontinent. It’s really not an exciting time. One of the caregivers will take Mom to the toilet and turn on the running water, to encourage output, so to speak.

My mother would be horrified if she knew I wrote about and shared those challenges. But, I reasoned, she and Dad could have named any of their children POA. They chose the writer.

Back over Easter, I was leading Mom to the Easter egg hunt when we encountered the Easter Bunny. The bunny stopped long enough to hug Mom, but didn’t speak. Did the Easter bunny ever speak? Mom should have at least recalled that, I presumed. But alas, some memories did not cross the span of time and neurons.

The Easter Bunny’s muteness was NOT acceptable to Mom. Several times she yelled out, “C’mon. C’mon.”

Anyone could read those words on her lips, and in between the lines of her furrowed brow.

Eventually, the Easter Bunny disengaged its fingers from Mom’s, while I slid my fingers into the crusher’s hands. We traipsed down the hallway towards Easter Brunch.

The brunch passed without incident, mainly because I maintained strict oversight in allowing Mom access to the orange juice and extra chocolates. Confined to a corner near the window because of our tardiness and Mom’s desire for light, Mom spent much of her time watching the youngsters anxiously waiting for the hunt to start. One little guy told us all about being in second grade while boasting of towering over my five-foot frame. Mom muddled through with the occasional angry outburst because she couldn’t follow all the conversations.

When a seat opened up in the main room, I guided Mom to an open table where she had a better view of the children processing in and out, and out and in. Then, I grabbed the bunny ears and ladybug antennae and fiddled with each, placing one on Mom’s head (this is where I apologize to Mom), and one on my own head (this is where I apologize to my children).

And Mom lips parted, first in a slight grin, then like the Red Sea, ready to swallow up all the jellybeans and life before her. In the span of a half hour, she was content again.

I lived a thousand lives in between a good moment and a bad. Her voice, when at optimal yelling capacity, reminded me of days she didn’t separate far from her rubber spatula when discipline was needed.

Copy of DSCN1093 - softHer voice, when saying hello to new faces sprinkled with sunshine, rang through to my heart, resounding of ten days spent in Italy, when I took my parents twelve years ago. I had never seen my mother more radiant than in those moments in the square in Siena, mangiare al fresco, called out by a carabaniere, or holding court tableside with a carafe of vino della casa in Fiesole, above Firenze, with her Italian-American daughters at her beck and call.

In celebrating Eastertime with Mom, I experienced the rising and dying and rising again of Mom to beat another infection or crush a daughter’s disposition.

Lately, at Mom’s care home, several residents had died due to falls or the natural cycle. Despite having spent countless hours in this setting, I never knew how often one could contemplate the shaky nature of our existence.

We are all one fall away from the precipice, or one flight away from opening the skies. We are one moment away from sheer joy or complete madness.

I swiped left and right, and prayed we wouldn’t have to do this again until Santa Claus arrived AND that Mom would here to scold him too.

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