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Stella Joy, Part II: Every Precious Moment

Stella Joy, Part II: Every Precious Moment

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Published by torontostar
Stella's parents no longer see their daughter as a dying 2-year-old, but as a child who is navigating death. They are following her lead.
Stella's parents no longer see their daughter as a dying 2-year-old, but as a child who is navigating death. They are following her lead.

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Published by: torontostar on Jul 11, 2013
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Stella leans her temple against theforehead of a black goat that hasmounted the fence. That’s not quitetrue: her mother Mishi Methven ma-noeuvres the little girl’s head towardthe goat, since the tumour in Stella’sbrain stem has stolen her neck control.“He’s soft isn’t he?” Mishi says, brush-ing Stella’s shaky hand over the goat’sneck. The tumour has taken away herhands’ motor skills, too.“That is nice. Did you get a goat kiss?” Alight goes on in Stella’s eyes and the2-year-old smiles slowly, purposefully.It requires up to 43 muscles to show  joy through your lips, and she mustwork to turn on every one.The sparrows swoop over Stella onthis balmy grey morning in March.Eight months ago, she was diagnosedwith diffuse intrinsic pontine glioma(DIPG), a rare and lethal brain tumourthat strangles the body’s functions as itgrows.Doctors expected the tumour to ex-tinguish Stella within three months.Her light has dimmed, but it’s still on.The journey has been a difficult onefor her family, bringing them time andtime again to life’s dark edge. They haveheld three vigils now, with Stella slip-ping in and out of coma-like states. Lastweek, her palliative care doctor said hewas “extremely concerned” aboutleaving town given her state.This week, says Mishi, “he’s dumb-founded — he used that word.”Stella has bounced back again.The whole experience has forcedMishi and her wife, Aimee Bruner, toloosen their grip on the reins of theirown lives. After months of waiting fearfully for Stella to die, they’velearned to live each day they have leftwith her. They are what all of us aspireto be — full-heart, full-mind present.Her parents no longer see Stella as adying child. They see her as a child whois navigating death.They are following her lead.
Her parents no longer see their daughter as a dying 2-year-old, but as a child who is navigating death. Her light has dimmed, but is still on. They are following her lead, living each day in themoment. Even as the crises mount and subside, the anniversary of her diagnosis soon passes
continued on
Stella treasures her milk bottles, "bubbas" as she calls them, but an inoperable brain tumour means there are often times she is so ill that she refuses them.
Over the course of ayear, Stella’s family,friends and completestrangers worked togive the ailing toddleralifetime of experi-ence. Star journalistCatherine Porter wasthere every remark-able step. Her chron-icle of Stella’s journeyconcludes Monday. Itis also available atthestar.com and, indiary form, as a StarDispatches ebook.
Stella Joy, Part II
Every precious moment
StarStore, One Yonge St., Toronto ON M5E 1E6 Attention:
– OR – Order online at
Name.................................................................................................. Address.............................................................................................. Apt...................... City ...........................................Prov......................Postal Code.....................................Telephone..................................Credit card...................................................Expiry date....................
Make cheque or money order payable toStarStore, or order online at www.StarStore.ca.Please allow 2 weeks for delivery.
Published in 2009, this 10”x11” soft-back edition contains nearly 200 archival images offering a visual overviewof Toronto’s history, documenting attitudes and values expressed by City officials, from the 19th century to 2008.
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She has taken them back to RiverdaleFarm, announcing last night betweenspoonfuls of vanilla ice cream, “Peeee.Ewww.”There were lots of pauses and hardly any sound because the tumour isstrangling Stella’s voice, but after somedeductive thinking her mothersunderstood.Riverdale Farm is Stella’s favouriteplace in the world. Before she got sick,she loved to climb the fence and tellthe copper-coloured pigs they stank and should pee on the potty, like shewas learning to do.It’s the place she will remain. Stella’smoms have bought a plaque for heracross the road in the Toronto Necrop-olis Cemetery’s scattering garden, andher friends have planted a memorialtulip tree for her right outside thefarm’s gates.It will bloom every year for two bril-liant weeks around Stella’s birthday in April and turn the copper of her hair infall.More than any other place, Riverdalefarm holds the fullness of Stella — herexplosive joy and her heartbreaking tragedy.Stella’s eyes are closing by the timeher mothers carry her to the pig pen.Mishi strokes her hair. Aimee holdsher trembling foot. She won’t call thepigs today. Maybe another time. May-be not.“You are all tuckered out. What a niceway to go to sleep — on the farm,”Mishi says.“She wants to get whatever is left of her life,” she says of her daughter.“This week, she just wants to live. It’sreally nice.”Testament to her reclaimed hopeful-ness, Mishi is pregnant again, withsperm from the same donor who madeboth Stella and her little brother, 6-month-old Sam (carried by Mishi and Aimee respectively). After months of darkness, she haspushed back up to life’s craps table.
 We don’t like to thinabout it, but it’s there, an undeniabletruth. We might die slowly years fromnow. We might die instantly a minutefrom now.One hundred years ago, we all wouldhave seen death up close in our houses. Around 1900, life expectancy in North America was only 47 — more than 30years younger than today. Chanceswere very high of witnessing not only the death of your parents, but also of asister or brother. More than half thepeople who died in 1900 were childrenunder 14. Most of them were killed by an infectious disease such as tubercu-losis, typhoid fever or diphtheria.Back then, your cousin died at home,surrounded by his extended family.Then, they washed his body, dressedhim, laid him in a homemade coffin setin the front parlour for friends to visit.The tradition of the all-night, de-bauched wake, which often involveddancing with the body — really — con-tinued until the 1950s in Newfound-land.
IN1Continued on next page
‘She wants to get whatever is left of herlife. This week, she just wants to live’
Mishi walks withStella throughNecropolisCemetery, whereshe and Aimeehave bought aplaque in thescatteringgarden. It’sacross fromStella’s belovedRiverdale Farm.
Stella Joy, Part IIEvery precious moment
: TheDiagnosis
: EveryPreciousMoment
:Final Days
That’s according to Katherine Ashen-burgin her marvellous book,
The Mourner’s Dance
.“The death is really and truly part of the living that continues, and it all fallswithin the same house,” a womannamed Donna Burke tells Ashenburg.Death was as constant and familiar asChristmas.Today, medical advances have beatenback those infectious diseases andgreatly prolonged our lives. Most of usdie in old age now of heart disease orcancer. While 80 per cent of deaths in theUnited States occurred at home in1900, the reverse is true now: 80 percent of deaths occur in hospitals orold-age homes, according to
The Last  Dance: Encountering Death and Dying
,atextbook belonging to bereavementcounsellor and former pediatric oncol-ogy nurse Andrea Warnick, a closefriend of Stella’s family.Few of us have wakes anymore. Wesay goodbye to our loved ones in anoth-er institution — the funeral home.Culturally, we treat death as a failure. We forget our dead, unlike traditional African culture, which teaches theyoung to remember the names of theirancestors going back generations. Wedon’t have any national holidays likeMexico’s Day of the Dead, when fami-lies host all-night fiestas at their rela-tives’ gravesites. As a society, we’ve forgotten whatdying looks like. Warnick says this isthe basis of our fear of death.“The human body knows how to die. We’ve medicalized it so much, we’veforgotten that. It’s important for peopleto be around death more. The more weare exposed to death, the less anxiety over it we’ll have as a culture.” Aimee and Mishi have already brokencultural ground as a gay married cou-ple. They are doing it again by keeping Stella at home to die rather than shut-tling her from one hospital to anotherfor medical treatments. And while Stella is only 2, her dyinprocess strangely resembles that of anoctogenarian. DIPG is stripping her of one faculty after another. She can nolonger walk, her arms shake, she’s lostmuscle control of her neck. Althoughshe had just mastered the potty a few weeks after her diagnosis, she’s back towearing diapers. She’s on a cocktail of medications and has to be spoon-fedher meals. Her words are disappearing. And while she has moments of vibran-cy, she also has long lapses of semi-consciousness, when she stares blankly at the wall.Her parents often say she’d fit in at anursing home.
hot afternoon in lateMarch, when people in Toronto areparading around in T-shirts and san-dals, Stella’s friend Flora Hay Draudeisover for a play date.The two have been friends for most of their lives, since their mothers met at amoms’ group. Flora, so slight andblond, was the quiet and cautious onebefore. Our redhead was the loud, wildone.Now, their roles have reversed. Stella’s voice has all but left her.They’ve already had their finger- andtoenails painted four different coloursand now they are playing “Is anybody home?” in the little wooden playhouseStella’s grandfather Poppa built in herbackyard.They giggle side by side in the dark asMishi knocks on the door.“It’s my turn,” Flora announces, run-ning outside in her bare feet andknocking. “Shall we all go outside for awalk?”Stella hasn’t been able to walk forseven months. Mishi carries her out-side and gives both girls turns on theslide, holding Stella in a firm grasp forthe trip down.If Flora is confused by her friend’scondition, she doesn’t show it. Formonths now, her parents have mixedbooks such as
When Dinosaurs Die
intoher nightly routine. They talk regularly about Stella’s tumour and how soonher friend’s body won’t be here any-more and they will all be sad. Hermother, Karen Hay Draude, says she’samazed by how both girls have adapt-ed. While Stella’s pending death hasheightened her own insecurities, Florathinks it’s normal. And so does Stella.“Stella’s so brave because Flora is sobrave,” Mishi says as she guides Stelladown the slide As a rule, 2-year-olds are exhausting.Their play dates are a relentless paradeof activities. This one is no different.Mishi, her 4
-months-pregnant belly protruding, keeps up the pace.They charge downstairs to Stella’s oldplayroom to paint. Mishi sets down twopieces of paper, two brushes and somepaint on a miniature yellow table. Shesits down with Stella on her lap anddips one brush in green paint.Two weeks ago, Mishi made a discov-ery while trying to force a brush intoStella’s one functioning hand. Stellakept trying to bite the brush. At first,Mishi thought she was being naughty.Then she realized: Stella was offering adifferent solution. With her mouth, Stella moves thebrush back and forth across the paper.Flora looks over and bites her brush.“Flora is going to paint with hermouth, too, see Stella,” Mishi says,manually tilting up Stella’s forehead soshe can see Flora. “Isn’t that funny?”
It is Stella’s birthday. Sheturns 3 today.She sits on Aimee’s lap on the frontstoop in a splash of cold sunshine,feeding the birds. Her little brotherSam, now 6 months, sits happily in aplastic baby seat beside them. This istheir morning ritual. Aimee rips bread into pieces andtosses them onto the driveway. It’s hardto imagine a more urban setting, with aregiment of black garbage bins andnavy recycling bins lining the street.But sparrows appear: one, two, three,four, five, all hopping about the con-crete and the small yard. The crabappletree, its purple leaves adorned withEaster eggs, becomes a symphony of chirping. Aimee tilts Stella’s head up.“You see them, right?” Aimee says.She gets no answer. Stella’s pupils dartback and forth. The cranial nerve con-trolling our eyes’ lateral muscle origi-nates in the brain stem’s pons region,where Stella’s tumour is growing. As aresult, most children with DIPG devel-op double vision.“See them coming closer and closer?”Stella’s eyes light up and her lips part,revealing her row of neatly separatedwhite teeth.“Three years ago today, your momwas happy because she finally got theepidural,” Aimee says of Stella’s reluc-tant emergence from Mishi’s body.“She had to wait five hours for it.”The family didn’t celebrate Stella’ssecond birthday with a party. She wasso little, they figured she wouldn’tremember it. That was two monthsbefore she was diagnosed with DIPG,when they still had a lifetime of birth-days ahead.Since her diagnosis, Stella has cele-brated her birthday with a big party every few weeks. “Happy Birthday” haseclipsed
TheGolden Girls
theme song as her favourite tune.Last weekend, her mothers threw herahuge third birthday party in the poolat Variety Village. More than 60 peoplebobbed in the water, each taking a turnholding Stella.Later, most of them wept as they sang over her birthday cake.That day of the epidural was Mishi’s30th birthday. Today is Mishi’s birth-day, too. But she’s no longer celebrating it. Today is a day to charge through andforget.Holidays are triggers for Mishi. They are life’s yardsticks. She can’t reachthem without measuring where she’sbeen and where she is going. Ayear ago, Stella never watched birdsplacidly from anyone’s lap. She chargedafter them, laughing maniacally.Is Stella still that person, trappedinside her tomb-like body?Jean-Dominique Baubysuffered afate similar to that of Stella. At 43, theformer editor-in-chief of 
had asevere stroke that flooded his brainstem. The result was “locked-in syn-drome” — full paralysis of the body apart from the ability to swivel his neck and blink his left eye. He couldn’t movehis mouth, his tongue, his hands. Butlike Stella, his mind was untouched.He wrote a poetic memoir called
The Diving Bell and the Butterfly
by blinking that eye. The book, later turned into anaward-winning film, is both beautifuland painful to read. He describes theagony of not being able to talk, tastefood, turn the soccer game back onafter a nurse shuts the television off,reach out and ruffle his son’s hair. “My condition is monstrous, iniquitous,revolting, horrible,” he writes. He canno longer be funny. Blinking out lettersis too slow for wit. When his lover askshim on the phone if he is there, hestarts to wonder if he is anymore.
Continued from previous pageContinued on next page
Stellaclutches herhomemadeStella doll whilenapping on thecouch in lateMarch. Hertumour isstripping herof her faculties.
Stellagets a kissfrom Aimeewhile enjoyingawarm Mayafternoon.Her eyes havetroublefocusing andshe can nolonger sit upon her own.

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