The Twinkling of an Eye: A Mother's Journey

By Sue Brown

What's a mother to do when her high-achieving boy - adored by his close-knit family and private school community - turns bully overnight? How is she to know that his sudden headaches and vomiting are far more serious than all the doctors insist? 'The Twinkling of An Eye' ​is the true, life-affirming memoir of a mother's harrowing but heroic fight against her son's rare brain tumour. Brown tells her story with courage, humour and heart. Hers is a revealing, frank and deeply affecting story of the light that shines even in the darkest of places.

• Language: English
• Publisher: Human & Rousseau
• Release date: Jul 3, 2017
• ISBN: 9780798174800

Sue Brown

Sue Brown is a qualified physiotherapist who has worked at Groote Schuur and Vincent Pallotti Hospitals, in London for a time, and in private practice in Cape Town. Her journey with Craig changed her life completely. Currently, she volunteers at the St Luke’s Hospice in Cape Town.

Book preview

The

Twinkling

Of An

Eye

Sue Brown

A mother’s journey

Human & Rousseau

For Meg

Wise, beautiful, gentle daughter,

And the kindest big sister

a boy could have asked for.

FOREWORD

This is a beautifully told story of a mother’s love for and devotion to her child – how she had to eventually face up to, and find a way to cope with, the painful reality that she could no longer just ‘kiss and make better’. Yet, Sue has managed to merge the deep pain and sadness of her loss with humorous and moving stories that will make you smile, and certainly cry.

Sadly for me, I only met Craig once he had lost his ability to communicate verbally, but I saw the ‘the twinkling’ in his eye on several occasions: when something funny was said, or his friends popped by and told him about the antics they had been up to at school. His eyes spoke a thousand words of the love he had for his family and friends.

He was a young, spirited, fun-loving boy with incredible courage who taught us all many lessons during a short time.

Now Sue works tirelessly at St Luke’s Hospice in Kenilworth, Cape Town. She has worked in the bookshop, helped with fundraising, supported the patients in our daycare centre to create beautiful arts and crafts every week, and written many thank you letters on our behalf. She is a wonderful inspiration to the staff, our patients and their families. We all adore her. Thank you, Sue, for the work that you do, and the love that you spread where you go.

On a personal note, I would like to thank Sue, husband Neil and daughter Meg for granting me the privilege of caring for your precious Craig. Thank you for your warm welcome and acceptance, and for allowing me to walk this journey with you.

Your love and amazing courage through this difficult time was, and always will be, an inspiration to so many around you.

Sister Yvonne Jackman

St. Luke’s Hospice

Cape Town

AUTHOR’S NOTE

In my very personal mother’s rendition, our family, friends and many professional people have unwittingly become characters in Craig’s story. I apologise for instances where their memories of events, or conversations, may differ from mine.

In relating those events that left me hurting more than I already was, I have found myself recalling times in my personal life – and career as a physiotherapist – of which I am not proud. Times when, immature and insensitive, I was not the person another needed me to be.

I could as easily be the villain in their story. In the words of Irish writer C.S. Lewis, ‘Experience: that most brutal of teachers. But you learn, my God do you learn.’

I apologise for my mistakes, and trust that I have indeed learnt.

I wrote this story to record the extraordinary events of my thirteen-year-old son’s battle against his cancer. The frankness, wit and grit with which he guided us – the adults – along the unpredictable scale of extremes that life with a brain tumour is. The fervent living that only a boy intent on going ‘straight to the big time’ could match.

It was also written with an eternal debt of gratitude to the remarkable medical professionals who cared for Craig so impeccably, and with such respect.

Thank you for doing the hardest work with the greatest humanity.

My husband Neil, daughter Meg and I have been blessed with the many people who have walked this path with us. Whose love and care were greater than the fear and despair that threatened to overwhelm us.

There is indeed a light that shines in the very darkest places, and that the dark is unable to put out.

And, of course, thanks to Craig … my bold, bright boy – for all the joy that you brought to this world.

For living the story that this book tells.

PROLOGUE

‘Little man,’ I said, ‘tell me that it is only a bad dream, this affair of the snake, and the meeting place, and the star …’

– The Little Prince by Antoine de Saint-Exupéry

____________________________

Craig clatters, two steps at a time, down the wide wooden staircase of our big Victorian home. Slowing only briefly to take the corners, and all dressed in his khaki school uniform, punctuated by the dark-and-light blue stripes of the Bishops Preparatory School tie. His hastily tucked in shirt tails are already escaping from underneath his navy pullover.

The ten-to-eight chapel bell peals out across the clear, cold outside. Craig hops on one leg while pulling up the other long grey sock, stubbornly slipping down.

‘Quick Mom, I’m going to be late!’ his gravelly voice urges. He has shoved his homework folder and piano file into his outsized navy backpack: its transparent little window still reads, ‘Craig Brown, 6A.’ I breathe in his warm-from-bed boy smell, relishing that round, earnest face so close to me again.

The two of us half walk, half jog, to his nonstop, excited chatter. Looking right and left as we cross Stone Pine Avenue, then onto the dew-wet grass of the rugby fields, the mown cuttings clogging the soles of our shoes. The sun is just lighting up the top of Table Mountain, where some first-light mist clings.

I feel anxious as we near the classroom buildings. How will Craig’s now-teenaged friends react to finding him in their midst again? How can I possibly explain to the teachers that we were wrong in believing the worst – that our son was terminally ill two years ago, when suddenly here he stands, still just the same age … still twelve years old?

Then I remember we have an appointment with his neurosurgeon in the afternoon. He will hopefully be able to clear up all my confusion, I’m sure.

I imagine him ordering new brain scans that will show what actually became of those rampant tumours – too many to count – on those last nightmare scans … after which we stopped looking.

In this subterranean dream dawn, I find great comfort in this conceived proximity to my son. The dream’s perplexities cause me to struggle up, through heavy layers of sleep, to perforate the surface of a common new day. Our two cats are heat-seeking dead weights against me, resistant to being shifted as I adjust to my bearings to the inside of this smaller house, where we moved after Craig died. From where we no longer have to hear his school chapel bells toll each morning, a trumpet practice in the afternoon, or the bounce of tennis balls in the evening.

Soon Neil’s radio alarm will sound, and he will leave for his day’s work as a fund manager. I will wake our daughter, and drive her through the winding, tree-lined roads of Wynberg to Springfield Convent School in Cape Town’s southern suburbs. Where this achingly beautiful autumn morning will speak of the magnificent world still awaiting her.

And I will say, ‘Goodbye, love you,’ to her closing car door, with that longing to hover, to intercept all the heartache that life must still bring her way. That maternal need-to-protect so magnified (if that was ever possible) by my helpless observance of her brother’s brave reckoning with his own, impending death.

Craig’s absence in the car is a real, raw presence on the drive home, so I turn on the radio for some distraction. Owl City’s Adam Young, Craig’s favourite artist, is singing a new hit which he will never hear, about a shooting star shining. It hurts more than the quiet, so I snap it off, and tears smart.

At home Craig’s little dog ‘Russell’, named after the Jack Russel part of his mix, waits impatiently for a walk, which keeps me from seeking escape in a little more sleep. The city hums at the foot of Table Mountain as it gears up for the day’s routine and, when Russell and I return, our Virginia creeper is glowing with its own, scarlet light. And there are brightly painted pansy faces in the blue pot at the door. A friend pops in for tea, and I am reminded that my son was indeed greatly loved, and is still missed by countless others, too – that I am not alone.

My head tells me that all of our days are numbered; that we will all be where he is, one day. In an eternal form – impossible to comprehend, even dream, this side of death – where the pain of loss does not exist. But it is hope enough for a welling up of great thankfulness for this child, with whom I was entrusted for his thirteen years.

THE BOISTEROUS BOY IN THE CRYSTAL BALL

But Reepicheep here has an even higher hope. Everyone’s eyes turned to the Mouse. ‘As high as my spirit,’ it said. ‘Though perhaps as small as my stature.’

– The Voyage of the Dawn Treader by C.S. Lewis

____________________________

‘How are babies born, Mom?’ Craig’s gruff little question hovered, expectantly, inside the warm car. Safely strapped in, the 120-km coastal drive to Hermanus for lunch with friends had kept him still long enough to send his five-year-old mind into overdrive.

Neil, busy driving, had an amused little smile as I swivelled in my front seat to face Craig, launching into my best, impromptu account of his own birth. It was an induced labour in hospital, for which his father only just managed to call a nurse and doctor in time for Craig’s headlong delivery.

I sensed shy Meg squirm in anticipation of her little brother’s verdict, while he paused to absorb the facts. The spreading grin on his round face pre-empted the words: ‘That’s so cool, Mom! So it was just like, Bombs Away! ’

As we laughed, I remembered again the awe and gratitude with which I was overwhelmed that day of Craig’s arrival, as I had been on the day of his sister’s birth – so aware that the physical description of childbirth, although enough for my tiny son’s question, fell hopelessly short of conveying the first sight of my babies.

The sense of fleetingly experiencing the mystical, the divine, for there are no words.

I had been dedicated to my work as a physiotherapist for the decade before Meg’s birth, giving my all to my patients’ treatment.

By the time Craig, our second child, was born, I had transformed from one who never cooed over a pram, even worried that I might not feel the same about my own babies, to a woman immersed in full-time motherhood.

There had been concerns about Craig’s growth in utero.

‘Hmmm, growth retardation,’ the radiographer had muttered while doing our 32-week ultrasound scan – after which I religiously rested on my sides to maximise the blood flow through the placenta, until I could feel Craig’s strong movements inside me.

These were worrying days that only heightened our giddy relief at his safe, albeit hasty, delivery, and perfect health.

But his unsettled first night in the nursery led the sage nursing sister to predict: ‘You’re going to have a tough time with this child.’ Lulled into complacency by an idyllic first two years with peaches-and-cream Meg, I smugly dismissed her prophecy.

How difficult could this new baby possibly be? This nurse clearly had no idea what a calm and competent mother I was.

Neil had a demanding job, and had started studying towards a correspondence MBA degree.

He also had, very soon, a newly humbled wife – exhausted as weeks of colic turned into sleepless months. The illusion of the calm, coping mother of his children welcoming him home for dinner was reduced to the reality of a desperate, weepy and barely civil woman. His freedom to play the golf he loved was a distant memory – the closest he came to a course that year was the TV screen, while rocking his unhappy son.

Then one day, a week before his first birthday, Craig decided it was time to walk – showing off to Neil that evening his staggering steps, and his four baby teeth in a huge grin. He sufficiently tired to fall into his first full night of sleep, which meant that we could finally do the same, and life looked up for us all.

‘Oh dear,’ said Meg one day, of Craig’s menacing approach upon her teddies’ tea party, ‘I got a trouble!’ – typically summing up the determination with which he launched himself into toddlerhood. His pale-blue-turning-brown-blanky – its satin-ribbon edge unravelling from the rub of his little fingers – his beloved Barney and ever-present dummy became our critical rescue-and-recovery kit when his plans were thwarted.

I was mortified by my powerlessness to deal with his tantrums in public places, while Meg developed a beautiful way of disarming her tempestuous little brother when the frustrations of life got the better of him.

To Craig’s furious, ‘Meggy, I am going to cut you up and put you in a pie!’ she replied kindly: ‘Oh Craigy, you’ve just been reading too much Beatrix Potter!’

At the other end of his emotional spectrum was a disarming smile, mischievous twinkle in his eye and a no-holds-barred zest for friends and life. He ran to me at the preschool fete to press his gift of a lavender bag, purchased with ten precious tokens, hastily into my hand – leaving me aching as I stood in the sun and watched the back of his little blond head rushing off towards his friends.

I searched through a glut of annoyingly naïve books for help in parenting one so small – yet so astoundingly persistent. My son’s grey-green eyes sparkled with a self-belief, and a competitive streak incontestably his dad’s, but there remained the enigma that was uniquely this boy.

For what purpose had such life force been packed into this tiny child, who was diagnosed with hereditary growth delay at age seven? This little cuckoo chick, or so he felt, in my nest? Small or not, he would warn his friends that they had to be nice to him, because he might be bigger than them all one day.

He had great plans. He would lead a band, be the next Cristiano Ronaldo. Or he was going to make it ‘straight to the big time’ as a top lawyer. ‘I don’t want to work my way up … I already win all the arguments at home.’

Craig’s welcoming beam greeted any guests to our home, impatiently in wait with a barrage of stories to be told. Celebrations were counted down to, and relished.

On sunny afternoons, a friend to play, the air filled with laughter, the scent of over-ripe lemons whacked for a six with a cricket bat, and grass stains on boy’s knees. Calls of, ‘Come and watch, Mom!’ and, ‘We are hungry – but only for treats!’

Craig’s face read like an open barometer of emotions, leaving us in no doubt about his opinions. That charismatic beam would reflect in faces around him – but a cocked right eyebrow could develop into full-blown storm clouds of disapproval, sending all scurrying for cover. Strong feelings that once led to tantrums would mature into an impressive ability to speak up in defence of his friends.

At age ten, a black-and-white sense of justice led him to abstain when asked by a teacher to vote on a classmate’s punishment, insisting on explaining his reasoning in private after the lesson to the surprised ‘sir’.

Craig decided to play chess, ‘which grows brain cells’, rather than much-vaunted rugby, ‘which will damage them’