Meanwhile, all the time he was at pre-school we were waiting for the phone call that would change Jonathan’s life. When it finally came, ‘Oh my goodness’ was all I could say all morning. Our world was changing – even to look at, as during the night there had been heavy snowfall, covering the landscape.
When we told Jonathan the news, as we took him off his dialysis machine for the last time, he beamed at us. We had been telling him that he was waiting for a new kidney for well over a year, since he was two, and that this would be life-changing. Before we did anything else we prayed quietly for the anonymous family who had donated their loved one’s kidney. It felt right to acknowledge the unimaginable pain they would be going through now, and their incredible generosity in the midst of it.
Then we started getting ready. Our support network received the email that we had prepared for this moment, while I mechanically went through the checklist of what we would need for a hospital stay. Nervousness, apprehension and excitement convened in the pit of my stomach.
As we packed our bags, Jonathan seemed to be a bit confused; and as we drove to the hospital that morning, trying to get enough traction through the snow to get up the hill in the next town, he became more subdued. By the time we were meeting surgeons and he had been nil by mouth all day, he was looking worried. For while we had prepared him for the life-changing aspects of this day, we realised we had never really discussed how it would actually happen. Until then, it seems Jonathan thought that a kidney transplant was the sort of thing you opened in the post!
By now we had seen Jonathan in intensive care a number of times, but this time was so different. For a start, we had signed the piece of paper that had put him there, rather than his health deteriorating to a point where he was transferred from a ward. Mindful that our family’s renewed hope was dependent on another family’s loss, we continued to experience conflicting emotions. The speed with which the new kidney started working took us by surprise; at one stage Jonathan had two bags hooked to the side of the bed, one with nearly clear-coloured liquid from his native kidney, and one with urine-coloured liquid from his new kidney. The transformation in his body was happening before our eyes, and was also presented to us on paper. For four years we had become obsessed with Jonathan’s blood result numbers – what was his renal function like (creatinine)? How high was his urea level (usually excreted in urine)? Was he anaemic? Now, in his hand, Christopher had the numerical proof that Jonathan’s new kidney was working: his creatinine had dropped from over 450 to a normal 50. Tears streaming down his face, he muttered, ‘It’s so amazing.’
After his transplant, Jonathan struggled with pain and was readmitted to intensive care, but within a week he was the happiest we had known him. The debilitating sickness had stopped literally overnight; he had enjoyed his first bath with his sister, who was now eight months old (before this, his dialysis dressing couldn’t get wet), and he had enjoyed tastes of food high in potassium that were previously forbidden. Despite this new freedom, now we were home he started to cry whenever he was laid down. I had a sixth sense that he was struggling to breathe, but hoped I was mistaken.
Once his high temperature was confirmed, there was nothing for it but to go back to the children’s hospital. Being on very strong immuno-suppressant medication to prevent his body rejecting the foreign body part also meant that Jonathan was more susceptible to infections. The respiratory virus that he had contracted escalated fairly rapidly and within the week he found himself back in intensive care, by which time I had also picked up a strain of the same bug and was not allowed into the hospital until I’d been clear for 48 hours. If I hadn’t had Susannah to look after, the wait would have been unbearable, knowing Jonathan was getting increasingly ill in intensive care and not being there with him. Ringing his bedside three times a day, the receiver was pressed to his ear and I spoke words of encouragement to him, but he could never reply beyond a whimper. I felt torn in two.
During the 44th of my 48 hours away from the hospital I received a phone call saying that they would make an exception for me to enter the room where Jonathan was an inpatient, so that I could say goodbye to him before he was put on a ventilator. Jonathan’s lung function had deteriorated to a point where this was essential to try and save his life. No one knew, when I said that goodbye, whether it would be the last.
There have been many times when Jonathan has teetered on the edge. Once we started counting, but soon gave up as the admissions continued. This time it really could have gone either way: the procedure, putting a tube down into Jonathan’s lungs, was risky and delicate. Interrupting our loving farewells, the consultant had to act quickly, and set to work.
We watched as the consultant expertly inserted the tube into Jonathan’s mouth. The numbers on the monitors plummeted before our eyes, indicating that his heart rate and oxygen saturations were going through the floor. Aided by two doctors, the consultant requested instruments in a hushed, calm tone, and soon stabilised him.
‘That was extraordinary. I have never ventilated a child in a room where there is so much peace,’ said the consultant, as he finished work. He seemed genuinely struck by what had happened. We had felt it too – but we were not surprised. Having sat watching him we had both prayed; prayed for the consultant’s steady hands, prayed for Jonathan, prayed that he would feel no pain. We all felt a peace that passed all understanding.
Next morning, I returned to the ward to discover every intensive care consultant (intensivist) crammed into Jonathan’s room. Heart sinking, I knew this could only mean one thing.
‘Jonathan, I can’t believe you’re having a party and you haven’t invited me,’ I joked as I entered; for at times of profound concern, humour seems to be the coping mechanism that comes the easiest.
‘Your son is very ill,’ one of the consultants said soberly, putting the intense back into intensivist. ‘We have put him into an induced coma and increased the ventilator to the maximum of what it can achieve. It will now be a question of waiting to see whether he survives the next 24 hours.’
Getting into bed with Jonathan I hauled his inert, heavy body onto mine, and held him close; I sang to him, read to him, chatted to him. There was not a flicker of recognition, but the nurse said sometimes people can hear even when they are very heavily sedated, as Jonathan was. Most of all I cuddled his warm body. But I wasn’t ready to say goodbye to him.
‘You’ve got to give him permission to go, darling,’ Christopher softly ventured, later that morning. Deep in my heart I knew he was right, knew it wasn’t for me to cling on to Jonathan, knew he wasn’t mine to hold on to. Yet every part of me was screaming, ‘No, I’m not ready for this. He can’t go now.’
Drawing myself down to Jonathan’s soft ear, I whispered to him, ‘Jonathan, we love you. If you want to go, you can go, but if you want to stay we would love to spend more time with you.’
It was the hardest thing I have ever done.
Later I began to understand the impact those words had on him, on his future and on me.
He survived. Jonathan: that’s why we had given him the name, meaning ‘God has given’. God had given him to us once again.
Since that admission there have been more, occasionally with stays back in intensive care. Usually these trips precipitate conversations about Jonathan’s quality of life, for those are the times when his body is at its most ill. And his body doesn’t look well at the best of times.
If Jonathan’s life was defined by the illnesses he has, then I could understand the questions. But it isn’t. For us as a family, quality of life is defined by living life with those elements that mean the most to us – for Jonathan this is his faith, time with his family, time with his friends. We have always tried to be guided by him, and have tried to make decisions regarding his medical care that reflect our belief: we will not keep going just for the sake of it.
On more than one occasion we have been asked to evaluate his quality of life with consultants and healthcare professionals,
in a bid to draw up plans for different scenarios. None of this is easy. Navigating a path in our son’s best interests, where the view ahead of us has been obscured with unknowns, has not been straightforward. We try to reflect on his quality of life at these times, and also our belief that this life is not the end. These decisions are not taken alone. Trusted medical staff, who have travelled the journey with other families, have been a great source of knowledge, but our main source of strength comes from one who knows the future better than anyone.
Looking round the special school that Jonathan started attending when he was four, we met a boy with blond hair and alert, alive eyes; instinctively I felt that Jonathan would get on with Will. I was right. Will and Jonathan were yoked with the same label, PMLD, and became the best of friends. I also had an instinctively good feeling about the teacher who showed us around, and so it proved. The variety and entertaining fun she put into lessons during that first year made Jonathan spark into life.
After his first Christmas at special school, we were delighted and deeply grateful that our village primary school welcomed Jonathan for one afternoon a week to spend time with his able-bodied peers. It seemed that Jonathan’s education was sorted out – a special school, plus some social interaction in mainstream school. A great balance.
Yet, as reception turned into Year 1, and Year 1 turned into Year 2, there was a creeping sense of disappointment; for while Jonathan’s friends at primary school were engaged in more academic lessons, time at the special school seemed to be standing still, an educational stalemate – groundhog day! It felt to us that there was no progression of learning from one year to the next, and the inspirational teacher we had warmed to was now on long-term sick leave, although she did come in for part of that year and spent some time with Jonathan on a one-to-one basis.
On one such occasion she met me in school when I came to collect Jonathan to say that she had been showing him words that began with different letters of the alphabet.
‘When I showed him “Mummy” and “Daddy” he was consistent at looking at “Mummy” when I asked him which one began with “M”.’
The teacher’s excited report fell on rather underwhelmed ears. At the time I didn’t really think through the significance or consequence of these very early findings of hers, but was grateful nonetheless. But this became one piece of a message, a nudge in the right direction, which when confirmed by others was to change Jonathan’s educational pathway. Others included an educational specialist who visited us as part of the car crash claim.
After the accident I hadn’t wanted to pursue an insurance claim – I felt that it was a genuine accident, and I was keen to avoid the stress of going to court. But even at three months old, when Jonathan came out of hospital, it was obvious that his life was going to be very different as a result of this accident. What is more, we needed help. Help with disability equipment. Help with therapy. And above all help with caring.
But in large and complicated cases like Jonathan’s, insurance claims do not get settled overnight. Both sides of the case wanted to see how Jonathan’s life would pan out – how disabled he would be, and the impact these disabilities would have on him. So, throughout Jonathan’s early years we met experts on both sides of the case who would come to our house to visit him, and write specialist reports in their field based on their findings. Kidney experts. Housing experts. Physiotherapy experts. Occupational therapy experts. Even teeth experts. I was sent report after grisly report to read and comment on, often with a prognosis attached at the end – how long we could expect Jonathan to live.
By the time Jonathan was seven, he had a new sibling – Jemima, our youngest – and our family felt complete. Home life was very busy with three children, plus we were now fielding an inordinate number of visits from health professionals on the instructions of the court. Most of these reports made depressing reading, detailing Jonathan’s many physical disabilities and making miserable predictions about his future. But, one visit stood out as being different from the rest.
‘Have you ever tried to teach Jonathan his letters and numbers?’ our visitor asked, having spent some time watching Jonathan interact with us.
‘No one has ever asked me that before,’ I said. This was so different to the sad sighing, and the ‘Can he do anything for himself?’ questions that I had become used to.
Being an expert in education for children with the kind of communication issues that Jonathan faced, she had already realised that his eyes were going to be his key to accessing the curriculum.
On her second visit she brought some cards to show us – some had basic pencil line drawings on, others had words. She demonstrated to me how to show Jonathan the cards, teaching him what they said, before arranging them so that he had a choice to make. Sitting on the other side of the E-Tran (eye-transfer) frame (which I discovered was a very fancy word for a clear Perspex board with a hole cut out of the middle), she could see where Jonathan was looking. He was pointing with his eyes at one or other of the cards. Eye-pointing. If he was pointing with his eyes, that meant he could make choices, and if he could choose then he could begin to show us he understood.
So, between encouraging reports from Jonathan’s special school teacher and this specialist, the seeds of hope were sown. Hope that Jonathan had the capacity to learn, hope that although his body was very disabled, all was not lost when it came to his mental capacity.
During that summer we tried out an eye-gaze machine. Every time the specialist came with his equipment, he would leave frustrated. He could tell that Jonathan had the capacity to use his eyes to choose what to look at, because he could see his eyes moving; but each of the machines struggled to locate Jonathan’s iris and use it as a cursor. Each time, he would patiently explain to me the host of reasons why the eye-gaze machine might not work for Jonathan – his astigmatism, his muscle relaxant medication, the medication he was on to reduce excess saliva (both of which reduced the dilation of the pupils) – but he became determined to find something that would work. Finally, an older model seemed to work, but it was patchy, so that Jonathan could only have a few options on screen at any one time.
Meanwhile, the specialist teacher adapted a phonics (a method of teaching children how to read) programme she was writing for eye-gaze equipment for Jonathan. Using his eyes as a cursor, Jonathan could select different groups of letters by looking at them for a few seconds. Most days of the holiday I would sit with him, curtains drawn, as he tried out the machine with a basic phonics and words scheme. During those sessions a number of things became apparent: firstly, Jonathan was a highly motivated learner. Even with the sound of his sisters playing in the garden, he was happy to sit inside for half an hour a day and ‘work’. Secondly, even when the eye-gaze computer appeared to be working, it had obvious limitations. For example, Jonathan could control it with his eyes closed, which looked like an extraordinary trick, until we realised that the machine was ‘seeing’ the plastic tubing that led into his nose and delivered oxygen into his lungs, instead of his pupil. Taking this out wasn’t an option.
Very early on we discovered that someone would have to stand behind Jonathan and hold his head still so that the sensitive machine could read him, as Jonathan moves his head around quite a lot. We would have to hover alongside the machine checking it could ‘see’ Jonathan properly, often needing to move it and do the whole thing all over again.
Most significantly of all, although Jonathan seemed to have control over his eyes, the machine was still struggling to find what he was looking at. It would flick from one option to another, although Jonathan’s eyes often didn’t move. Due to his divergent squint (an eye that turns or diverges outwards) it takes some practice to work out which eye he is looking with. The machine was literally trying to work out which of his eyes it was going to follow. So we realised that the E-Tran frame was the better option for Jonathan, because we could clearly see what he was looking at from the other side of the board, and his carers quickly became adept at w
orking out which eye he was seeing through.
Like a jigsaw, everything was starting to fall into place. Jemima was less dependent on me and ready to attend baby and toddler groups, and I had enough carers to manage with all three children. Finally, we had found a way for Jonathan to access the national curriculum – through his eyes.
The final spur to teach him how to read and write was, ironically, delivered by the special school. Every morning between 9 and 9:30 (which I felt was when the best learning could be achieved, as Jonathan was fresh and ready for the day), he was supposed to sit in a semicircle around a teaching assistant strumming songs on a guitar while the teachers had a meeting. It was time for a change. We rearranged his schedule; instead, between 9 and 10:15am, we had Jonathan at home, teaching him basic letters and numbers. With helpful email advice from the professional who had first suggested we try this, and armed with various resources, I set about writing a plan for each day that would fully cover the literacy and numeracy national curriculum for the reception year.
At the special school, for this academic year Jonathan and his friend Will were together moved into a different class comprising children with learning difficulties, who were more physically able than they were. I hoped his learning at home would be matched by the learning at school, and he would develop.
During the first two weeks of the new regime, Jonathan seemed engaged and happy as we introduced different letters and started some basic whole word reading. Although after this his interest seemed to diminish; he appeared to be disengaging during our time together, and I was beginning to wonder whether the work I was setting was too ambitious. With these doubts forming in my mind, I rang for some support from the educationalist, and her reply surprised me.
Eye Can Write Page 3
