EYE
A MEMOIR OF
CAN
A CHILD’S SILENT
WRITE
SOUL EMERGING
JONATHAN BRYAN
EYE
A MEMOIR OF
CAN
A CHILD’S SILENT
WRITE
SOUL EMERGING
Published by Lagom
An imprint of Bonnier Publishing
3.08, The Plaza,
535 Kings Road,
Chelsea Harbour,
London, SW10 0SZ
www.bonnierpublishing.com
Hardback 9781911600787
eBook 9781911600794
All rights reserved. No part of the publication may be reproduced, stored in a retrieval system, transmitted or circulated in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without prior permission in writing of the publisher.
A CIP catalogue of this book is available from the British Library.
Designed by Envy Design
Text © Jonathan Bryan 2018
All poems © Jonathan Bryan 2018
Foreword © Michael Morpurgo 2018
Introduction and chapter 5 © Chantal Bryan 2018
Jonathan Bryan has asserted his moral right to be identified as the author of this Work in accordance with the Copyright, Designs and Patents Act 1988.
Every reasonable effort has been made to trace copyright holders of material reproduced in this book, but if any have been inadvertently overlooked the publishers would be glad to hear from them.
The author and publisher shall have no liability or responsibility to any person or entity regarding any loss, damage or injury incurred, or alleged to have incurred, directly or indirectly, by the information contained in this book.
A portion of the proceeds from the sale of this book will be donated to Jonathan Bryan’s charity Teach Us Too (www.teachustoo.org.uk).
For my sisters, Susannah and Jemima.
My story is made whole by yours.
Song of Voice
As adept fingers point
My silent soul emerges,
Like the dawn blackbird’s song
Suddenly breaking the black.
Music buried in the mind
Sings melodies divine,
Of ancient tales yet untold
Unfurled to men astound.
Whose beauty hears my voice?
What depths saddened my pathway?
Soaring eagles spread wings
I fly to my destiny.
CONTENTS
Foreword by Sir Michael Morpurgo
Introduction by Chantal Bryan
Chapter One
Song of Silence
Chapter Two
Hope in Illness Part 1
Chapter Three
Hope in Illness Part 2
Chapter Four
Song of Voice
Chapter Five by Chantal Bryan
A Family of Haikus
Chapter Six
Baking Beauty
Chapter Seven
Holidays
Chapter Eight
PMLD
Epilogue
Going Home
Pictures
FOREWORD
Some years ago I wrote a story I called Cool! In it I tried to imagine how it might be to be a child locked inside a world of his own, aware of the world outside, but utterly incapable of communicating with it. He lives alone with his thoughts, his feelings, hopes and his despair, longing to escape, to break out.
Little did I know that one day I would meet such a child, who remarkably, with the help and support and love of those around him, has found a way to break out of his prison of isolation, and has become a writer, a silent soul emerging from his chrysalis of solitude.
His name is Jonathan Bryan. He has revealed to us through his writing how it is to be him, inviting us to get to know him, reaching out to discover who we are too. Laboriously, choosing letter by letter, by the look of an eye, making word by word, his ideas and stories and poems take shape, and we discover a child, a writer, of great emotional and intellectual depth. We read of his intense passion for life, his mischievous sense of fun. He tells of his hopes and fears. His words tell us so much about our universal human resilience, our capacity for understanding, our longing to communicate.
Jonathan has opened the door for us into his world, and reached out his hand to us in his writing. When we take his hand as we read, he is not locked in any more. And neither are we. We join him in his journey, he joins us in ours. Not alone any more, Jonathan.
Michael Morpurgo
INTRODUCTION
BEFORE JONATHAN WAS BORN, CHRISTOPHER AND I HAD A FEELING THAT SOMETHING WAS WRONG. Exactly when it first started, I can’t remember, but we felt it deep inside; and once we had whispered it to each other, this feeling, rather than disappear, didn’t go away. Instead it became stronger and more solid, like the kernel hidden inside a fruit, buried and hard, but growing as the fruit grows around it. Sitting heavy within us, it shrouded our expectations and clouded any hopes for what lay ahead. It felt so real, so substantial, that we planned for it as a reality, never knowing what ‘it’ was.
While I was pregnant, Jonathan was perfectly healthy; the midwife put our feeling down to Christopher being a vicar who constantly hears unfortunate stories, and as the weeks progressed and I passed the point at which the baby would be viable, I longed for her to be right. We even dared to start preparing for the baby; but the feeling, the certainty that something was wrong, was still there.
With three weeks to go, we were beginning to hope we could doubt our fears, and on a cold, soggy January day we were on our way to meet my parents. With Christopher at the wheel, I sat in the front passenger seat daydreaming out of the window, looking forward not just to lunch out with my parents, but further – to the time when we would be a family of three. When we would need a car seat with us to carry our child; when we would be going to meet not just my parents, but the baby’s grandparents.
In front of us a car turned from the other side of the road. No time to stop. No time to brake. Only time to see in the millisecond before it happened that we were about to have an accident: a full-on collision into the side of the car that had blindly turned across our path. The effect was like hitting a wall. Smash, grind, bang, yelp. All the sounds of the car accident melded into one as the seat belt tightened across my chest and legs. Lunging for the door handle to let in some fresh air, panic flooded me as I cried, ‘I can’t breathe, I can’t breathe.’
Winded by the impact, stunned by our written-off car and scared for the baby inside me, I sat motionless as Christopher and my sister, who had been travelling with us, came to my side. Once the adrenalin wore off they were taken into a nearby garage to rest, while I chose to stay in the car, being comforted by a man from the garage, waiting for the ambulance to arrive. If I hadn’t been pregnant we all would have walked from the accident with minor injuries – my sister, Christopher, the driver of the other vehicle and me. But for the unseen traveller in our car that day, things were very different.
Swinging in the ambulance towards the hospital with Christopher, I placed my hand on my stomach, longing to feel the baby move within me, concentrating my hand on the stillness and convincing myself that staying calm was having an effect on the unborn child. After the initial shock from the impact, I experienced a strange sort of calm: maybe this was it? Everything we had been worrying about was some kind of premonition of a car accident. But was the baby still OK?
Once in the hospital a nurse placed a monitor on my stomach, and after a tense few moments she found a heartbeat. Maybe this was it? Wondering: would the baby now be induced, just to be on the safe side? Was this just an
unfortunate way to come into the world, all a bit of a shock; a slightly different ‘when I was born’ story to everyone else’s?
‘What will happen now?’ Having been the centre of some commotion, I was now attached to a monitor and left in a side room while Christopher was being checked over in A & E.
‘They’ll probably leave you until you are full term.’ The nurse seemed pretty sure, but added, hedging her bets, ‘Or they may deliver you today as a precaution.’
However, when she came back a few moments later to look at the monitor, her tone seemed to have changed. Clearly trying to keep her voice even, she pronounced, ‘I’m just going to get some doctors to look at this.’
Enter two doctors: both studying the tickertape paper monitoring the baby’s heartbeat from a belt around my stomach. Both with different medical opinions. Both now having a heated discussion about my fate, half in the room, half in the corridor. About our fate. From where I lay on the bed I strained to hear every word and work out what was going on, but all I now knew was that while the argument continued, I was being prepared for theatre. Surgical stockings, a paper to sign, and finally a scanner were brought in. The dispute was settled. Shown a black blob on the screen and with no time to process what ‘placental abruption’ actually meant, I was wheeled into theatre. The operation started before Christopher had even scrubbed up. Escorted in, facing the far wall, he was edged round the bed to my head. Maybe delivery by emergency caesarean section was what the strange feeling we had shared was all about?
‘Congratulations, you have a son.’ The doctor turned to Christopher.
And then I glimpsed him. Blue, slimy, limp, lifeless, silent. Nurses, who minutes before had been talking to the doctors about what they had watched on TV the night before, fell silent. The whole room seemed to be holding its breath. Waiting. Waiting for some response. Waiting for the cry of life. Glimpsing that still body placed onto the metal trolley next to me like a slab of meat at the butchers, I felt disjointed from what was going on. Like I was watching a nightmare unfold from the outside.
‘Come on,’ the nurse muttered under her breath to the body she was pummelling. Silence. More desperate effort. Eventually he let out a little cry, and although it was what we had waited for, to me it sounded more like a cry of anguish than a cry of life. Wrapped in a blanket and waved under me to kiss, the little bundle was whisked away to intensive care.
At every juncture during that first day I thought: so, maybe this is it? A car accident, an emergency delivery, a short spell in intensive care. The whole experience felt like a composer starting a piece in a minor key, building more texture and tone, but never managing to break out into the major key. At every turn we expected the storm to have passed and the sun to be bursting through the cloud. Instead, the emerging medical picture of Jonathan was getting darker and heavier.
‘This baby needs a name.’ The nurse in the special care baby unit was right. It had been well over a day since Baby Boy Bryan, 6lbs 13oz, had been born by emergency C-section following my car accident; and yet giving him a name as he struggled for life hadn’t been our first priority.
‘Jonathan.’ We were certain now. ‘We’ll call him Jonathan. It means God has given.’ But even as I pronounced it over the tiny helpless baby isolated within the clear windows of the cot, I was considering the other half of the verse. For as Christopher and I had knelt together against the hospital bed and spent ourselves in prayer for him, the verse that had come to mind was from the Bible, in which Job, once everything has been taken from him, says: ‘The Lord gives and the Lord takes away.’ Our gift was not given to us indefinitely.
For days I wasn’t able to touch my baby. Yearning to hold his warm body to mine, feel his breath, stroke his cheek, reconnect his flesh with mine, I was reduced to watching his tiny form through the reflection of the incubator, singing and talking to him through the ventilator holes. Above all we were praying that the tests would come back positive, indicating that his kidneys were working again, and we could go home.
Asking for help does not come easily to either Christopher or myself; we prefer to soldier on in our self-sufficient way, but one of the first gifts Jonathan gave us was learning that when we ask others for help it is not a sign of failure.
Once I was discharged from hospital and Jonathan remained in, I had so little time I was reduced to eating microwave meals day in, day out: the sort that smell gorgeous, fill you up while you’re eating them, and then leave you wanting more about ten minutes later. So we sent a message round our church, asking if people could provide a meal that I could warm up in the microwave.
Shortly afterwards I was on the phone to Christopher – long early evening phone calls were our way to keep in contact while he was working – when the doorbell rang repeatedly, followed by muffled voices. At the end of that half-hour phone call alone, we had enough meals for ten days – I had become the invisible guest at many a table!
As concern grew about Jonathan’s reflexes (or lack of them) and general floppiness, we were transferred by ambulance to Bristol’s neonatal unit. But amid all the anguish of that first week, driving behind the ambulance with a radiant sunset ahead of us, a feeling of peace swept over me.
A few days later that peace was shaken by one term: MRI. I never doubted that Jonathan was mentally ‘in there’, and now, as he looked out from the portholes of his incubator, my heart ached for the child who was so knowing, so loving, looking so alone.
In hospital you know how bad the news will be by how much effort is put into the room’s appearance. For the results of Jonathan’s MRI brain scan we were taken to a newly painted bright room with a soft, comfortable sofa, a beautiful seascape on the wall, a real pot plant on the table and an oversized box of tissues. This was going to be bad. Really bad.
‘There is global damage on both his white and grey matter. Your son is likely to have moderate to severe cerebral palsy.’
As the prognosis was delivered, we sat in stunned silence, struggling to imagine what life would be like for our son, our only child, our Jonathan. But the tissues on the table remained unused. Rather than question the physical implications of this diagnosis, we asked questions about the certainty and extent of his cognitive disabilities. Could the brain ever compensate for its loss? Would his potential intellectual ability be able to withstand the injuries they were showing us? So, later, after we had wept together in our own room, prayed together and wept some more, a second consultant was sent to see us. Maybe these parents hadn’t understood the gravity of the message; no one gets this news without instantly bursting into tears.
‘Your son is unlikely to be able to walk, skip, hop, talk, feed himself – even recognise you as his parents!’
This extended list didn’t burst the floodgates in front of the consultant either; rather, the little voice in my head was pedantically irritated by the idea that a child who couldn’t walk might be able to skip and hop. Besides, I felt such a deep connection with Jonathan, I couldn’t believe he didn’t already recognise us.
Perhaps in desperation that we still hadn’t understood what this MRI meant, a different consultant stopped Christopher in the small artificially lit corridor outside the ward, and uttered the words that would go on to haunt me.
‘This is the worst MRI scan the radiographer has ever seen of a child of this age,’ he said. ‘If it weren’t for the fact that he is breathing for himself, you would have the option of turning off the ventilator.’
But he wasn’t on a ventilator, and we knew that should he need to go on one again, as he almost certainly would, we wanted to have dedicated and entrusted our small, knowing child to God beforehand. Calling a bishop friend we gathered close family to pray for Jonathan as we sought guidance about how far to take his medical care. Crammed into a miniscule room at the hospital, we held a small ceremony around an open cot with Jonathan tucked under blankets looking out at us with big trusting eyes. This was so far removed from the baptism that I had imagined for him. There were n
o songs: just the soft intonation of the service; little jubilation, but plenty of tears. Everyone did the best they could – the nurses provided a special new blanket for him to be covered in, the bishop brought a candle and a small font from the Methodist chapel, I wore a new cardigan my cousin had sent me and the bishop’s wife provided a cake for afterwards. And Jonathan just kept looking out at us with his wide brown eyes. Knowing, loving, trusting.
Watching anyone suffer is horrible, but watching a small baby suffering is almost unbearable; everything in me as a mother was programmed to want to make him better. For a start, Jonathan couldn’t be fed properly due to his kidneys not working at all well. So I had to watch my starving baby boy smacking his lips together and chomping on a dummy, only to shout out in frustration that it didn’t deliver what he wanted; while I expressed bottle after bottle of milk to be put in the freezer. Even when he could be fed, it wasn’t my milk he was allowed, which could be harmful to his recovering kidneys, but a special formula safe for renal impairment. Instead, a feeding tube was sent up his nose and down into his stomach, passing the gag reflex and inducing a retch on the way, only to be randomly snagged and pulled out by his tiny fingers a few hours later, necessitating the whole procedure to be undertaken again.
Outwardly we could measure the liquid going in and out of his body, and weigh him every day, which told us how his kidneys were (or rather weren’t) processing fluid; but for all the other kidney functions, it was only really a blood test that could tell the doctors what was happening. So, we watched while once, sometimes twice a day his bloods were taken. This involved doubling his hand back into an unnatural position as doctors and nurses dripped out blood into vials to be sent away for testing. Needles used for drips would last at best a few days before needing to be replaced in a different part of his body. (In his time Jonathan has had drips in veins in his hands, arms, legs, feet and even his head.)
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