The Twinkling of an Eye. Sue Brown
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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