There is nothing romantic about an ambulance ride. Perched on top of Mummy, I balanced precariously, held in by only a small strap and Mummy’s strong arms, which were gripping me more out of necessity than for comfort. Jolting down the motorway I felt grateful my fits weren’t triggered by movement, as we rattled our way to the hospital.
Lurching around in Mummy’s arms as the ambulance went from one roundabout to another was made up for by the sirens announcing my arrival, and the glimpses of the traffic chaos I was unintentionally causing. Like a boat carving its way on a river, the ambulance left a trail of weirdly angled vehicles in its wake.
In comes field marshal Dr Dudley, and the enemy launched its largest surprise attack yet.
Memories of my time in the resuscitation room are disjointed: bright lights, voices, needles, monitors beeping. Once on the renal ward, familiarity helped my body breathe a sigh of relief.
Literally years of my life have been whiled away incarcerated within the confines of the renal ward’s white airless walls; but for all its prisonlike qualities, this for me is a sort of hospital homecoming, with friendly nurses’ faces, the fish still exploring their tank in the corner and consultants who have known me since I was a baby. For once you’ve joined the renal family, you never leave it.
Describing what it feels like to be as sick as I have been is almost impossible. Kidney failure sucks most of the joy out of life and the life out of joy, leaving a shell of existence. Like shafts of sunlight cast on the forest floor there were brief glimmers of enjoyment, but these were few and fleeting. Transplantation was that moment when the trees ended and the warmth of the sun finally penetrated my soul. That was when I was three, and my life was mostly transformed. Except now everything was hanging in the balance once again.
After being introduced to the palliative care consultant, it was made clear to Mummy and me that this admission had only one expected outcome.
CHAPTER THREE
Hope in Illness
Part 2
Found
Comforted
Cradled, covered
Life’s light illuminated
Stable rock, steadfast ground
Voice of peace, nourished by sound
Strong arms enfold, solid hope renewed
Anticipation of Home revived by love imbued
OVER TIME IT BECAME CLEAR THAT THE VISIT FROM THE PALLIATIVE CARE CONSULTANT WAS MORE ABOUT THE FUTURE THAN NOW. While Mummy insisted I was better and became a stuck record, asking every doctor who entered the room about going home, I knew this word ‘better’ was a relative word for me – it only meant I hadn’t died this time!
When we eventually left the ward I still had to be pushed in my wheelchair. I still had cerebral palsy. Despite my kidney transplant, I still had kidney failure. I still needed a force 9 gale of oxygen blowing up my nose. But nothing compared to the sense of freedom at being finally released from the confines of our hospital room.
Sometimes, when my body is relaxed and I really want to say something, a fully formed word comes out of me in a low monotone voice, surprising me and anyone with me. Rather than make a big fuss, which would instantly make my excited muscles contract and stop me saying any more, and to honour the speech for the communication it is, conversations are resumed. When I am very tired my mouth seems at its most relaxed, though forming words out of the sleepy babble can prove tricky. Audible speech is a rarity for me, and the times I have managed it have gone down in family lore. As we passed the ward doors my elation made me shout, ‘Go!’ Like the moment you stand on the edge of an open field on a windy day, Mummy shared the euphoria and broke into an irresistible run, pushing me in my wheelchair. Then, tired from the exertion after days of languishing in a hospital bed with me, she collapsed in laughter at the lift in between panting for breath. We were free!
At home, our return was met with a mixture of emotions. Running to meet me, Jemima lunged at my wheelchair, draping her small arms around me and plastering my chest with kisses.
‘I missed you Jon-Jon, I love you Jon-Jon.’ Her sweet voice filled me with joy.
Lying on the sofa, playing a game on the iPad, Susannah didn’t look up as we entered the room, apparently too engrossed to greet me. But underneath her indifferent stance, I know she loves having me at home as much as everyone else. For a start, I could see she was now losing the game and didn’t appear to have noticed; and although she still felt cross with me for being ill in the first place, and for stealing her mummy for a few days, her relief was palpable when she finally sidled up to give me a hug. And that brief hug was as precious to me as Jemima’s embrace.
Getting ‘better’ is the most tedious, slow and frustrating business. Once home, my hope was to see all my friends. Will would be wondering when I would be back, and my local friends would expect to see me out and about. I just wanted to continue life as if the last week hadn’t happened and I suspect Mummy felt the same, as she took me off my BiPAP mask for a whole day when we got back. Initially, this plan looked as if it was working. For the first time in over a week Mummy left me to go and watch Jemima in her nativity play. My little Jemima, star of the show, with no proud big brother to watch her. Missing out. I hate missing out.
When my sisters came back I mustered all my energy to play a game of Hungry Hippos with them, and then cuddled next to them as they watched TV. They still hadn’t realised I couldn’t see the screen when spasms made my head go back, but their company is all I craved.
However, my body is expert at rallying itself for a day – rising to the occasion, fulfilling its promises, performing to the crowd. But sustaining the momentum is hard work, and the next day we paid the price for our impatience.
Being in a BiPAP mask is like the loneliness of longing to be outside when you’re sitting at the empty classroom window watching your friends play; or the distance you might feel when at a museum watching people work behind a screen, completely engrossed in an activity that doesn’t include you. If it weren’t for the fact that BiPAP helps me breathe, I would hate it. Today I needed it. As it forced air in and out of my lungs I felt my body sigh with relief.
For now, I had a goal in mind. Whether my body liked it or not, I would get better to enjoy Christmas; and determination is a strong family trait, of which I inherited a double portion. There are a number of reasons Christmas is my favourite time of year. The first is a pragmatic one; my body doesn’t mind being cold but causes me a lot of stress when it gets too hot, so the winter climate is perfect. Secondly, it means Daddy-time – not the usual quarter of an hour snatched between bath time and his evening meetings, but real Daddy-time: long afternoons, fact-filled forays into books, the iPad and outings.
Then there is the real reason I love Christmas. Being part of my family nourishes me, but I am privileged to belong to more than just one family – I am also part of a family that is worldwide. Transcending age, gender, ability… disability: we encourage each other on the journey and my soul dances to the music of our fellowship and faith. Sometimes, heaven and earth seem so close, they almost touch each other, and, I believe, in the baby who was born that first Christmas they become one. This for me is the ‘magic’ of Christmas, and it’s not only for us children to enjoy. It affects people’s behaviour, making them jollier, more generous and gentler. Laughter: this is the main characteristic of Christmas Day. Laughter as my sisters literally jump up and down on the spot because Father Christmas has been. Laughter in church, sharing the peace. Laughter when a joyfully exhausted Daddy pops the champagne and family time begins.
When the clock struck midday that Christmas, it heralded not only the start of our usual family post-Christmas break, but also the beginning of a new family adventure. For the next three months Daddy was going to be off work on a sabbatical, but something more significant than extended ‘Daddy-time’ was about to happen to me. Daddy’s sabbatical was planned; my surprise was not.
CHAPTER FOUR
Song of Voice
As adept fi
ngers 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.
JANUARY BLUES ARE NEVER AN ISSUE IN OUR HOUSEHOLD AS WE PLUNGE FROM CHRISTMAS TO TWO BIRTHDAYS – JEMIMA’S, FOLLOWED BY MINE. Soon to be nine, my life settled into a new pattern of ‘normal’. For the first time in our family, we were discovering what many families would consider ordinary, as Daddy exchanged his Monday day off for a weekend. When you are used to snatching time with Daddy after a busy school day, a weekend is like eating a slice of sticky chocolate cake instead of a breadstick; and we were savouring every moment.
At home school every morning with Sarah and Mummy, I was planning a story about going on an adventure with my oldest friend Alexander. As babies Alexander and I met once a week, and then as toddlers at pre-school, and although I moved house when I was four, we kept in contact and still meet up in the holidays. When we meet it is as if we have never been apart; we just pick up where we left off. Now he was joining me in my imaginative story and amid the excitement there were eggs and enemies, as well as a useless crew. Annoyingly, my teacher Sarah was making me write a story map. In a bid to make this activity more ‘fun’, the plan was disguised as a mountain. Not a small hill, but a steep, craggy mountain struggling to be constrained within an A3 piece of paper. Every face of this edifice needed filling in with the tedious detail of each scene, while the story was bursting to be let out of the confines of my brain. For each word I wrote, a selection of options had been Blu-Tacked to a Perspex board; I needed to demonstrate I had read every word before settling my gaze on the one I wanted. Hundreds of small pieces of card, each featuring a single word, were kept in a large folder which was parked next to the desk, black and brooding like a dark cloud waiting to shower its words on the page. Scaling this mountain was painstakingly slow torture; choosing each word was so frustrating when the adventure was desperate to set sail.
During the week my story plan was making painful progress, making the weekend all the more full of escape. And this weekend was extra special because it was my Jemima’s birthday. Of the things I love in life, holidays and birthdays are near the top.
Every holiday we escape landlocked Wiltshire for the seaside, exchanging views of rolling fields hemmed in dark green for the wide, wild vistas of the ocean. This holiday was no different. On the beach, we were all overcome with the moment: the wide expanse of deserted sand, the ocean rollers beating the shore and dragging it back. Propelled in my chair, we broke into a jubilant run. With the sea air filling my worn-out lungs, and the cold January wind whipping my face, I felt the exhilaration of being alive. Alive to celebrate Jemima turning three. Alive to enjoy my family on another holiday. Alive to breathe in the beauty of creation. But my voice was locked inside my alive brain.
Travelling the narrow north Devon sunken lanes framed by van-high hedges, we crawled our way to a small secluded pub in a village by a bay. Cocooned inside the wood-panelled room, the fire emitting its warming glow, we shed our outer layers of coats, scarves, gloves, hats and jumpers until we were each surrounded by strata of clothing, littered around us like the discarded leaves of a cabbage. Looking around the table I gazed at the shiny windswept faces of those I love the most, and my heart was full of contented gratitude. But as the candles were stuck into Jemima’s pudding and we all sang for her, this moment was fringed with sadness that I couldn’t join my voice to the family chorus telling her how much we loved her.
When we came back from our holiday I returned to my story map, refreshed and with renewed energy and enthusiasm. To my delight Sarah said I could get on with my story. At last. Having spent interminable hours envisioning the opening scene, I could now, finally, put it onto paper. The process was still painstakingly slow. The clear board, which Mummy called my writing board, with pieces of coloured paper stuck on it was held in front of me, each colour denoting a different part of speech. Green for verbs, yellow for nouns, bright-blue for adverbs, grey for adjectives, brown for question words, lilac for prepositions, white for connectives and conjunctions and a little square with ‘abc’, which transported me to the spelling board. Once I had chosen a colour, Sarah and Mummy sprang into action, selecting words for me to choose from. Rifling through the folder, Sarah and Mummy muttered to each other.
‘Oh yes, that’s a great one.’
‘What about this word? Or do you think it’s too like that word?’
Conversations about words filled the air for minutes at a time while I waited. Finally, the ‘great word’, the ‘word like that word’ and the ‘try that one’ word, along with many others, were held in front of me – Blu-Tacked to the Perspex board, while Sarah pointed to each word in turn, making sure I had read them all before I fixed my gaze on the chosen one. Chosen from words selected for me. Not words I would necessarily write… if I could. Slow would be an understatement, as my story was meticulously pieced together; each word taking two Perspex boards (a writing board and a word board), a large file of possible words, hours of preparation, and Blu-Tack as a regular grocery item. And all the time, the precise word I wanted was invariably not there and I was reduced to asking them questions in my head. Frustration sometimes got the better of me, as I deleted the whole morning’s sentence with repeated looks at the delete sign. Irritation was thus shared with those supporting me. Unfortunately, frustration shared is not frustration halved; and with exasperation electrifying both sides of the board, we started again.
While in English I made sluggish progress, maths became my light relief; numbers and patterns had always attracted me, and now they combined in a lesson on prediction.
As a sheet of small circular stickers with pictures of cartoon faces on was waved in front of me, I was asked to predict the total number of stickers. Looking at the number board ahead of me, I stared at the 1 then the 8 before smiling, my signal to Sarah on the other side of the board that 18 was my answer. Pause. Mummy was now taking twice as long as me to count the stickers. Pause.
‘Did you know the total was 18, or did you make a lucky guess?’ said Mummy, looking at me in bewilderment.
‘How did you know the answer when you hadn’t had time to count them?’ asked Sarah.
It was her turn to be astounded. Confounded, even.
By the time Sarah and Mummy had gathered enough composure to show me a further three sheets of stickers, I just needed to glance at them to make sure they had the same pattern as the previous sheets, before looking at the 5 then the 4.
‘How are you doing this, Jonathan?’ Sarah and Mummy chorused, with a mixture of astonishment and pride.
I couldn’t tell them. I had no voice.
The following morning, eager to see if yesterday’s lesson was a fluke, Sarah and Mummy forwent their usual ritual of morning pleasantries, as Sarah produced from her bag some robot wrapping paper for me to look at. As usual, they gave me three seconds to take in the detail. Clearly there were nine robots in three lines, so 27 in all. Pause. Mummy was counting again.
‘There’s only 26. One of the robots in the middle line is missing,’ she said slowly.
Bother. I hate getting things wrong.
Strangely, this didn’t dampen their bewilderment; undeterred, they fetched the Lego bricks from the cupboard. First, one brick was fastened to the baseplate – it had four studs. Next, five bricks were added, and with nothing missing, I found the total number of studs easy to calculate. Rows of bricks mounted up in pleasing patterns, two rows of red, two rows of yellow; each time I accurately indicated the answer on my maths board. Finally, Mummy sniggered as she added a single line of three blue bricks. Nice try. Looking at the numbers in f
ront of me, I told her the answer was 60.
‘Nearly, Jonathan. The answer is… 62.’ There was a degree of satisfaction in Mummy’s voice. Finding out her son wasn’t a mathematical genius was obviously the cause of some relief.
‘Jonathan is right, Chantal. The answer is 60,’ Sarah whispered. After over a year of increasingly difficult addition and subtraction in home school maths lessons, this was a moment of enlightenment for them. As the colour drained from Mummy’s face, Sarah was sent to unearth Daddy from his sabbatical study.
While my mother has sat for hour upon hour of home school, my father’s main involvement has been the welcome interruptions of morning coffee. With the mindset of a scientist, he has also been my most sceptical supporter. All the time Mummy eulogised about what I was achieving, Daddy would be the voice of rational reasoning. As a result, he had observed me answering questions about books I had read, doing spelling tests with different carers holding my spelling board, and watched Mummy closing her eyes to prove she wasn’t moving my head.
Entering the room with disbelief etched in his smile, Daddy listened and scrutinised as the methodology was explained. With the baseboard in hand, he started rearranging the squares of Lego into random patterns, taking some off and adding others. The final product was presented to me for the customary three seconds… Tension hung in the concentration. Like an external examiner, Daddy declared time was up; sidling to behind the number board, he watched as I looked at the 5 then the 6. Pause.
Eye Can Write Page 5
