Weeks passed. Sometimes Jonathan would need surgery, and I found myself signing papers for operations on his tiny body; the most memorable was a tube for dialysis that is not manufactured to neonatal size going in through his stomach and coming out over his chest instead. For months Jonathan was incarcerated, unable to feel the fresh air on his face, hear birds sing, or see the first buds of spring; stuck instead in a stifling seasonless hospital. Used to the countryside, I found the concrete jungle of the centre of Bristol oppressive, and finding something to remind me of our home became part of my coping mechanism. So, most days I took a few hours out of hospital to walk trancelike in the city, passing people continuing with their lives as I struggled to make sense of the changing landscape in mine.
On one such occasion I was wandering aimlessly, asking God, why? Not why me, so much as why Jonathan? Why let a tiny baby whose body was so ill already endure such suffering? As the anger, the injustice, the pain was simmering within me, I saw in my mind’s eye a powerful image: Jesus hanging on the cross, with arms outstretched and pain etched into every part of him, the face of God behind. The words I heard were, ‘I know.’
Books and sermons on how to cope with suffering have never really helped me much, but that sudden image resonated strongly: I believe that God knows what it is to suffer, to watch a loved one suffering. I have sat on many occasions at Jonathan’s bedside, watching the monitors as he lies there, sometimes with drips in every limb; and I would have done anything to take away his pain, anything at all.
After this experience on a Bristol street, I continued to pray for Jonathan to be healed, but from then on I spoke to God not as someone to be persuaded, but as someone who knew – who felt it like I did, who felt it like Jonathan did.
One Sunday morning when Jonathan was a few months old, concern was growing over his oedematous body, swollen with fluid to double its normal size. For a child who had spent most of his life unable to be fed, Jonathan had developed ‘well-fed’ rings around his wrists and on his legs. But this wasn’t the podginess of a strong healthy baby; this was fluid his kidneys hadn’t been able to excrete. The dialysis tube had failed to work, and although the blood pressure machine hadn’t managed to get a reading on him for a few weeks, a different method had now shown it to be dangerously high. If Jonathan ever gets cataclysmically ill, it is always a Sunday; as a vicar this is the hardest day for Christopher to drop everything and come to hospital.
That day I remember sitting in the corner of Jonathan’s room with a cardiology consultant trying to explain to me that Jonathan was ‘very poorly’. Too new to the vagaries of hospital life to realise that this was a euphemism for critically ill, I was then ushered into a meeting with an intensive care consultant to discuss whether going back into the intensive care unit was ‘in Jonathan’s best interests’. Having read through his file, the results of the MRI scan and the predictions based on it, the consultant felt the risks of putting him on a ventilator were not justified by the prognosis.
‘Maybe this is the right time to call it a day,’ he ventured, speaking the words softly, presumably out of compassion for our situation.
I stared back at him. ‘Have you seen him?’ I said croakily, reeling from the enormity of the decision it seemed I was being asked to make. (No one had yet been able to make contact with Christopher.)
I led the consultant to the cot. On cue, Jonathan opened his big brown eyes and looked up at us both. Looking, knowing.
‘I see what you mean,’ the consultant muttered; to Jonathan, to me, to himself.
Being admitted to the intensive care unit that day was a joint decision eventually made by the consultants, Christopher and me, and mercifully Jonathan was to pull through… yet again.
When we finally arrived home after three months in hospitals, many people found it difficult to believe that there was anything wrong with Jonathan at all. The only clue to his illness was his nasogastric tube, coming out of his nose and stuck to the side of his cheek with multiple bits of tape. After all, no one expects a baby to hop, skip and jump. So, in a weird role reversal, I found myself trying to convince people that he was indeed disabled; for I knew that, whatever I thought about the MRI scan, the fact was that Jonathan was already missing milestones his peers had reached. He couldn’t roll, seemed to have very little control of his arms and legs, and his head was constantly facing one side, pulling his body with it.
In addition to this, Jonathan cried. Lots of people say that about their babies, don’t they? Almost as though there is some kudos in having the most difficult baby; a pecking order of adversity. Silently I would listen to stories of other people’s babies, knowing that Jonathan would trump all the stories I heard, but feeling no triumph in having the unhappiest baby I had ever known.
There were times when the crying was so extreme and intense that I felt Jonathan must have something seriously wrong with him – the spasms would course through his tiny body, often leaving him kicking out his legs and screaming out in pain. Surely pain like this was not normal? Didn’t it indicate a major problem? So, convinced that there was something the matter, I took him to his paediatric consultant, and to my relief Jonathan had a huge spasm on her examining bench. Relief that she had seen it, relief that it would get the diagnosis it needed and would stop.
‘This is the result of brain damage. We could try a tranquilliser and a muscle relaxant but there is nothing we can do about his crying. Most babies with this sort of brain trauma are like this for the first two years,’ she said.
Two years! In my anger and frustration, as I marched back through the hospital corridors, I yanked on the mobile cord hanging over Jonathan’s pram and spread the dulcet tones of ‘Twinkle, Twinkle, Little Star’ through the corridors. The incongruity was jarring.
But, while Jonathan’s body was struggling to cope with his brain damage, his mind was already showing signs of cognition. Christopher and I never doubted that Jonathan knew we were his parents; Jonathan even seemed to have worked out that when Christopher didn’t have the strange white collar in his shirt it meant he wasn’t working, and was more available for cuddles and playing. Whenever Christopher held him up close at home, Jonathan would concentrate all his energy on pulling the white piece of plastic out, and sometimes succeeded. Being a scientist by training, Christopher wasn’t easily persuaded when I told him that Jonathan’s mind was less damaged than his body; not until he had seen it and tested it for himself.
One day, when Jonathan was about nine months old, Christopher had him in the study on his lap, and I was called in from doing some chores.
‘Look at this.’ Christopher then proceeded to open Jonathan’s hand and do ‘round and round the garden’ on his palm. Before he moved up his arm, Jonathan was tensing, already letting out a chuckle. ‘He’s anticipating it, before it happens. This is significant.’
It wasn’t exactly part of the NHS milestone chart, but Jonathan was showing signs, like this one, that he could understand and make sense of the world around him.
But physically, Jonathan’s life was a struggle. Quite apart from the emerging picture of cerebral palsy, there was also the sickness resulting from kidney failure. Not half a day would pass without Jonathan being violently sick – we started mopping this up with little muslin squares, but quickly progressed to carrying absorbent white towels with us. After an hour of holding up a syringe full of liquid that slowly made its way into his tummy via his nasal tube, it was heartbreaking to watch it all come so dramatically out again, leaving him weak and tired, crying with the misery of it all.
Sifting through memories of Jonathan’s early life, I remember endless visits to hospital – for appointments, for treatment and for emergency admissions. With Jonathan’s overall health being poor, his condition could change very quickly from stable to needing urgent medical attention. On top of this, for nearly two years he travelled up and down the motorway to the hospital in Bristol for kidney dialysis. These trips happened two to three times a week; I usually
took him myself, but once a week he went with a nurse from a local charity.
One particular day stands out. It was doubly memorable as I was 36 weeks pregnant with our second child, Susannah.
It was one of the nurse’s days. I waved her and Jonathan off, then got on with household jobs and a much-needed rest. I hadn’t been home from shopping for long before my mobile rang.
‘Chantal, you need to get to the hospital – Jonathan’s collapsed on dialysis.’ Usually so upbeat, the nurse sounded quiet and shaken, with an urgent edge to her voice.
‘But he’s going to be OK?’ Jonathan had been ill but had rallied so many times, I assumed I would get the answer I expected.
‘I’m sorry, Chantal. Just come to the hospital.’
Standing frozen in the hallway, I attempted to recount this to Christopher, who was starting a meeting in our sitting room with someone I hadn’t met before. Whenever I get bad news, I always feel like someone has pulled a plug inside me; I feel the colour draining from my face until my legs weaken and buckle. Leaving our house to be locked up by the person who had just arrived for the meeting, Christopher ran back in to collect his wallet. We left behind the chaos of unfinished work, unpacked groceries and an unstarted cafetière of coffee for the uncertainty of hospital.
As Christopher drove, the hospital rang again. ‘Keep driving, but we are asking the police to intercept you and bring you to the hospital, as given the urgency Christopher may not be in the best state to drive.’
So now, with Christopher driving to Bristol, I was on the lookout for a police car while simultaneously trying to keep the hospital on the phone with a barrage of queries about Jonathan’s oxygen saturations. I needed to hear his vital statistics because I had worked out that while the hospital could tell me a precise number, I would know that he was still alive. At the point where the numbers stopped coming, there would be no longer any need to hurry; Jonathan’s fight would be over.
Just before we got onto the motorway I spotted a police car, and assuming this was the escort the hospital had promised, we flagged it down to a bus stop. But the policeman knew nothing about this crazy couple with the stressed-out driver and the heavily pregnant passenger insisting he drive them right away to Bristol, and was reluctant to do anything about it. I begged Christopher to continue driving, but by now his hands were shaking. We sat at the mercy of a phone call between the consultant and the policeman and waited for clearance.
Travelling at 140 miles an hour down the motorway in the back of a police car, it felt weirdly like all the other cars had stopped to let us pass. Junctions shot past the window. We were silent, holding onto our hope, praying, and even wondering whether this had happened now because we could only cope with one child.
Bursting into intensive care, we raced over to Jonathan’s bed, unsure of what would meet us. Jonathan opened his big wide eyes and smiled a hello to me, but when he saw Daddy he looked like the cat that got the cream – Daddy was here as well, and it wasn’t even his day off!
Although he was delighted to see us and we had managed to time our arrival with a brief relapse after the initial crisis, Jonathan was still critically ill; he needed to be ventilated and sedated while his body recovered from his very serious collapse.
While three-year-old Jonathan was in intensive care, I was becoming increasingly anxious about the baby in my tummy, who hadn’t moved for days. Before ringing the midwives, I had one last trick to try and initiate some movement. Lifting Jonathan carefully out of his bed, attached to multiple tubes and wires, I sat him on my knee and the baby visibly kicked under my clothing. Thus started a strong connection and bond between Jonathan and as-yet-unborn Susannah.
A few weeks later it was my turn to be in a hospital bed to give birth to our second baby. Susannah’s arrival into the world was far more straightforward and I couldn’t wait to introduce Jonathan to his new sister.
With Jonathan propped up by a pillow, I carried her tiny body from the cot and showed him the latest addition to our family. ‘Jonathan, this is Susannah.’
Looking down at her, a spasm of happiness shot through him. It was love at first sight.
When we brought Jonathan home from the intensive care unit, handwashing became our new obsession. Jonathan was on dialysis through his abdomen at home, and we had to be sterile to put him on and take him off the machine. With trips to Bristol reduced to routine appointments, we settled into a rhythm of being a family of four; having trips out, going to local baby and toddler groups, all the time knowing this could change at any moment.
For most of the first five years of Jonathan’s life I didn’t make many plans beyond the week I was in. In some ways this was quite liberating, as I often literally didn’t know what tomorrow would hold, so we lived for the moment. Nonetheless, it could also be immensely frustrating when the few plans we did have kept being altered to reflect changing circumstances. Mostly we took the decision that we would try and carry on regardless. So Christopher ended up hosting a surprise party for his mother, while I updated him step by step on the phone from Jonathan’s hospital bed about what I had planned. Holidays were booked at short notice, and cut short or cancelled at shorter notice.
Of all the things I have struggled not to envy in other people’s lives, it has been the ability to make plans and for the most part to inhabit each day as it has been planned. Meanwhile I lurched from one event to the next in a sleepless stupor, trying simultaneously to mop up the mess left behind and live in the uncertainty of the present. Learning that each day has enough trouble of its own has been a matter of trust, all the time knowing that there was one event – a kidney transplant – that could change Jonathan’s life forever, but never knowing when that might be.
As Jonathan’s body continued to miss developmental milestones, it became obvious that having the facial muscle control to form words was going to be almost impossible for him. Very occasionally he managed to say a word out loud, always delivered in a deep, expressionless voice: there was the time he said ‘Bye’ to his grandparents; when his godmother brought her boyfriend to meet us, Jonathan said ‘Gary’ (and we knew then they had to get married!); the time my parents sat next to Jonathan having just walked the length of a church behind a close friend’s coffin, and he turned to them and said, ‘Hi.’ These occurrences were so infrequent I could probably name every one.
For daily communication we used a variety of strategies. Thankfully Jonathan’s smile for ‘yes’ and frown for ‘no’ were clear, and if he had strong opinions on something we could often see it on his face. Using the ‘yes’ and ‘no’ we could give him a variety of options and pause between each one, waiting for him to smile ‘yes’ for the one he wanted. Similarly, if we held up two objects in front of him he would turn his eyes and often his head to the option he wanted – the book he wanted to have read to him, the dinosaur toy he wanted to play with.
There wasn’t a letter from experts or a day that I can remember when a non-verbal diagnosis was given to Jonathan, but like so many other things it got to the point where his friends were beginning to make more coherent noises, forming first words, experimenting with sounds. And Jonathan wasn’t. Professionals trooped through our lives as the amount of equipment Jonathan needed grew. One of the people to come and see us was the teacher for pupils with hearing impairment, because Jonathan hadn’t passed his neurological hearing test, and was thought by the professionals to be deaf. No one who knew Jonathan believed the diagnosis, but as a new mother I felt obliged to take her advice, and we enrolled onto a baby sign group. It was ridiculous really, because for a child with such severe cerebral palsy it was obvious that he wasn’t going to be co-ordinated enough to sign. For, while Jonathan could move all his limbs, he could not do this with repeated accuracy. It would take all his concentration and determination to move an arm or a leg broadly in the direction that he wanted, often with his body spasming the limb stiff, all the muscles pulled hard with the effort. Fine motor control was impossible. Like other for
ms of communication Jonathan was to try out, using sign language effectively was going to need a level of control that Jonathan’s body could not sustain. So, after months of classes, he graduated with a certificate, for perfecting the only sign he has ever been able to do – the wave!
If I had realised how important it would be to find a consistent way for Jonathan to communicate at that early stage, his journey might have been very different. But I didn’t; so we carried on trialling different switches (buttons of varying sizes for Jonathan to press with different parts of his body), and different positions, giving him choices to look at, watching his facial expressions change for yes and no. Almost every waking moment (and due to the poor nights’ sleep there were a lot of them) I was with Jonathan; holding him, playing with him, napping with him. Between us there was a bond that went past the need to communicate – I sensed his feelings and what his immediate needs were. At times I even had the sensation of feeling pain when he was ill.
Able-bodied friends have always been a huge blessing to Jonathan, playing round him, with him and occasionally on him, tripping over him as they learnt to walk. As his peers started pre-school and our regular meet-ups became less frequent, I asked the local pre-school to have Jonathan once a week. Joining in, in whatever way he could, has always been something that we have strived for in Jonathan’s life. With children his own age, something came alive in him; a desire to join in, try his hardest, get involved. At pre-school, happiness exuded from him, as with help he joined in all of the activities. If only I had thought about mainstream education for longer… but it never crossed my mind.
PMLD – profound and multiple learning difficulties. Where does this label originate from? I wish I knew. Based on his lack of physical ability alone, Jonathan had this term stuck to him. The first time I heard this, it was whispered from one professional to another, with no explanation, but it was presented as a certainty. If I had realised the significance of this one label among the many that Jonathan wears, maybe I would have taken more notice at the time; challenged it, based on what I already knew and felt about him. But I didn’t.
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