I look back at the last day of our old life with a kind of wonder now: the million summer freedoms, the complacency of our ease.
I watched the cricket with Max on my knee. Friends came to visit, and Ruth fed Max while we talked about our new neighbourhood among piles of books and packing boxes. Max gurgled regally as I changed one of his famous nappies. I organised our phone chargers and put his birth certificate carefully in a drawer with our passports and the mortgage statement. Then I hung a picture in what would soon be his room: a print from Maurice Sendak’s Where the Wild Things Are, of a little boy sailing bravely across the ocean, with “Max” emblazoned on the prow of his ship. I stood back and admired it, feeling all three of us to be limitless, and wondering what would happen next.
Ruth called her mum and gave her the latest; I told one group chat I thought Ring doorbells were for dickheads, and asked another what had been happening at work during my paternity leave. I ate half a chocolate bar, then forgot about it. Finding it a week later levelled me. This melted Dairy Milk, left for me by another person entirely, a stranger from an antique land.
Then I have an in-between memory. I woke at five and stumbled to the bathroom to drink from the tap. The house was silent. Maybe the unknowable internal dominoes had already started to fall, or maybe they could still have been stopped. Maybe I could have decided to get Max up early, for no particular reason. Gina, the night nanny helping us through the move, would have thought me strange, but it would have been fine. Or if I had picked him up for a cuddle and put him straight back. Or if changing any single moment in his life or mine might have made everything different. A different bedtime. A different bed. A different house. A different dad.
Just before six, the day already too hot, the pallid dawn creeping around the blinds: Gina’s voice, bursting into our room, screaming, blurred by a dream. I don’t remember her words. She is holding Max towards us, maybe hoping we will say she is wrong and he is fine. But he has no pulse, and he is not breathing. He is limp, cold, the colour of marble.
Then I am calling 999 for the first time in my life while Gina starts CPR. I am saying our address again and again, begging the operator to start telling us what to do. I am distractingly aware that I am naked in the presence of someone I hardly know. Now Ruth takes the phone, and under the operator’s instructions we move Max from the bed to the floor. Now Ruth calls out a rhythm while I press at his little chest with my clumsy thumbs, then pause for Gina to breathe into his mouth.
There is a voice in my head. You and Gina should not be dividing this responsibility, it says. You have introduced a layer of confusion. You should have taken charge. These are the things you have to get right at the most important moment of your life. This is happening. You are his father. This is your job. These will always be the things that you did. You are failing, and now your son is dead. “Please, please,” I say, sobbing as I count. All three of us are saying it. “Please, Max, please.”
A police car is nearby, and they arrive a few minutes after six. Ruth runs down to let them in, I think. We stagger dumbly back, and let someone lead us out of the room.
Max is still on the floor when the paramedics arrive a few minutes later, their notes tell me, but the police have done an excellent job with a defibrillator. The paramedics attach pads which adjust the shock to his size. He has no pulse. They push a tube down his throat to stop his tongue from blocking his airway. Then they put a bag over his nose and mouth which forces air into his lungs. Max is gasping once or twice a minute. But his heart starts beating again.
At six minutes to seven, we leave for the hospital. At some point I must have found some clothes. I sit in the front of the ambulance and say thank you to the driver. When we get there, a paramedic tells us Max has opened his eyes. I cannot calibrate what this means. Perhaps it will be a near miss, a story we will tell.
Max is rushed past us into A&E. I haven’t really seen him in an hour, just the cloud of people and equipment that attends him. Ruth, Gina and I are taken to a cramped waiting room, full of stacked chairs. I stare at the ceiling. An insect crawls along a fluorescent light.
We are accompanied by a placid hospital staffer who keeps offering us cups of tea. Two police officers join us, and before we get any update on how Max is doing, they ask us for an account of what happened. Gina is talking a lot, I guess motivated by a reasonable horror of getting the blame, explaining that she had noticed the silence in place of his usual snuffling and stirring, but that she did not know how long it had been. Ruth and I barely speak, but I understand that all three of us are yet to be eliminated from their inquiries.
We try to go to him, but are kept at a terrifying distance. Instead, we make a series of calls that irreversibly write our private crisis into the world at large. I know, as I hear my mother pick up, that I am about to compel her to enter one of the worst experiences of her life.
Eventually, a doctor comes to see us. Max’s blood pressure is stable. But he has had to be sedated so that a mechanical ventilator can be pushed down his throat. He has a very poor blood oxygen saturation level of below 60%. One possibility is a heart and lung machine, which will do the work on his behalf.
I think I have heard most babies who need this do not survive. The doctor’s gloss is the first of many annihilating euphemisms in the weeks ahead. “This is basically an end therapy,” she says. “It is the most we can do.”
Whether this is ultimately necessary or not, Max must be moved to a specialist hospital at once. Another doctor from the acute transportation team comes in to explain. He is likely to have suffered a brain injury, and he is in a kind of induced coma. We should ride with him in the back of the ambulance, she says, because there is every chance he will not survive the journey. That was her phrase: every chance.
We say goodbye to Gina, and I hear myself tell her that none of this is her fault, that she saved his life. We climb into the ambulance and huddle around our boy, seeing him for the first time as a patient, grotesquely encumbered with wires and tubes. I sob again at the sight of his funny little face. The sirens sound different from inside, the speed feels nothing like fast enough.
Ruth saves me from despair. She tells me we will take it in turns to tell Max a reason we love him. We lean very close and revive each other with his myriad idiosyncrasies, a litany of his infinite seven-week-old self. I feel that if we stop, he will go. In this way, we cross London to Great Ormond Street.
I’ve thought a lot about why I’m writing this. I know that I’m repelled by the kind of spiritual vultures who might scour Max’s story for shareable aphorisms, and that ideally, I’d like to slap them with an injunction. On the other hand, I also know that what happened has changed me utterly, and confronted me with things about the world that I had never even tried to understand: how unbelievably precarious it all is, the breadth of what constitutes a meaningful life, and the medieval state of anxiety that the disabled world still produces in the typical one. I hate the way that disabled lives recede out of view because other people are too squeamish to talk about them, and I want to confront that tendency. Mostly, though, I think Max is already a thousand times more interesting than anyone I’ve ever met, and I want to tell you about him.
As an advance on the parts of his story that are much less of an intergalactic bummer, I should tell you the first thing that really made me laugh. A few days after we arrived at Great Ormond Street hospital, some extremely nice friends sent us balloon letters spelling out Max’s name. When my friend Lizzie and I went to collect them, we found a harassed driver trying to wrestle them out of his van on a double yellow line.
“I hate delivering here,” he observed, scanning the street for ambulances and traffic wardens somehow left cold by his generosity of spirit. “I’ve got kids. What’s he in for? It’s always bad news!” He continued in this vein for a bit, the letters X A M bouncing against his idiotic ears, until Lizzie put her hand up to interrupt. “Sorry,” she said, “but are you not the stripper?” So that was a bright spot. When I say our mood had already lifted a little, you have to understand that our perception of what counted as good news had changed radically.
On day one, a police officer hovered at the entrance to Seahorse ward, as the paediatric intensive care unit is more palatably known, lest we try to finish the job we were still under suspicion of having started. Before we were allowed to see Max, we sat through half an hour of mollycoddling in a faded waiting area. Nothing sounded true until the doctor said, “It is likely there has been an insult to the brain.” I was brought up short by the term, which seemed to carry the right note of reasonless cruelty. I wasn’t wearing any socks, I now noticed, and my feet stuck to the coarse fabric of my shoes.
Then, at last: there he was. He had a blue tube going into his right nostril, and a white tube coming out of his left one. Two others came out of his mouth, fixed in place by medical tape. Medical equipment towered over him, and he lay under a cooling blanket, very small and still, at the top of a bed that might have fit 10 of him.
On day two, we were brought away from his bedside for an update from the neurologist in another dismal meeting room. The doctor took us through the results of an electroencephalogram (EEG), a relatively crude measure of brain activity, and a CT scan. “There appears to be damage to the brain stem,” he said.
Then he said we should prepare ourselves for the possibility that Max had lost the ability to breathe on his own, and consciousness itself. The 1,746 pages of medical notes I got from the hospital later are mostly impenetrable, but two routine words, in a direct message to a colleague from a consultant who had seen the EEG, will never leave me: “Oh well.”
The next day they brought us back for another debrief, this time on an MRI scan, which would provide a more precise view. “We can see damage to the cerebral cortex, and swelling to the basal ganglia, which is the part of the brain that controls language and movement,” the doctor said. “That could mean epilepsy and seizures. As he gets older we would look for signs of cerebral palsy. And we don’t know how the injury has impacted his ability to speak, or to swallow safely.”
We stared at a cross-section of Max’s brain. The doctor went on, “What we can also see now is that there is no damage to the brain stem.” He held his hands out as if describing a fish, emphasising what he said next with first the left, then the right. “Where before we were thinking about severe damage, we would now put it at moderate to severe.” Good news. Trying not to let hope in, I groped for the right language: what does that mean about consciousness? About his self, about his soul? “There are other parts of the brain that affect cognition,” he said, correcting my terminology. “It’s wait and see. But he’s starting to trigger his own breath, and that’s a positive sign.”
We went back to our place next to Max, and distributed the news to our families, stationed at hotels and coffee shops nearby in anticipation of their allotted hour at his side. Then we sat quietly and watched the nurses as they went about their comforting business. I said the same thing to myself again and again: no better time to be Max in the history of the human race. No better place to be Max than exactly where he is.
Sometimes his eyes flickered open, but we had been warned that this was not a sign of awareness. Ruth and I read to him, and stroked his forehead and ears. He was very far away, and it seemed impossible that he would ever grumble and belch in our arms again.
But Max started to breathe on his own, and to produce great hacking coughs – a horrible and blessed sound that suggested his gag reflex, crucial to eating safely, was unimpaired. On the fourth day, they started to warm him up. At some indeterminate point, he was awake. Now he seemed to look at us, and to complain, if not to cry. We couldn’t hold him yet, but Ruth gave him her milk through a tube, transfiguring a process of medicinal sterility into an act of maternal love. And I read to him again, wondering if he could hear, or if we would tell him about this one day.
I told him the story of his intrepid namesake, who sailed away to a terrifying and seductive place, and found his way home. It feels corny to tell you this because it’s so implausibly on the nose, but I suppose I no longer believe that anything is sentimental if it is true. I brought the book close enough to show him the pictures, and read:
And Max the king of all wild things was lonely and wanted to be where someone loved him best of all.
So he gave up being king of where the wild things are.
But the wild things cried, “Oh please don’t go –
we’ll eat you up – we love you so!”
And Max said, “No!”
Over the next couple of weeks, Max underwent heart tests, lung tests, metabolic tests, genetic tests. Nothing showed up on any of them. Meanwhile, the police left the scene of what they eventually determined was not a crime. “We’re probably never going to know definitively what happened,” a consultant said. “Our best guess is it was a case of Sids [sudden infant death syndrome] interrupted,” an event so rare that there are no meaningful statistics pointing to its frequency. I wanted to know if this was ordained before Max was born, and could therefore be recognised as a part of him; or if it might not have happened, a far more horrifying prospect. But nobody can tell you those things, either.
I had been thinking a lot about Gina, dwelling in my unsilenceable sense that although this wasn’t her fault, the decision to outsource some of our parenting meant that it must be mine. The truth is that I am ashamed, and I know that this feeling will never completely leave me. But being told that Max’s injury appeared to be the result of something beyond anyone’s control at least muted that reproachful voice a little.
Even so, what befell Max quickly came to feel like some merciless cosmic rebalancing. I have had every kind of luck in life, cascading from the accident of my birth to sane, well-off parents to my education, my job, my friends, meeting Ruth, and then the joy of Max’s arrival. My dad died, and it was terrible, but that is supposed to happen. At some point, I think I just assumed that I was going to get out intact.
Over our time at Great Ormond Street, I developed a warped, concentric taxonomy. At the very centre were Max and Ruth, who could have anything they wanted. Then came the other kids we met, and their families; then the doctors and nurses and porters and volunteers. I could usually get from the bedside to the front entrance and feel wrapped in a spirit of mutual benevolence. If one of those people had taken a piss on my shoes, I would have shrugged and put it down to nervous exhaustion.
The street outside was a mixed zone; balloon merchants and Uber drivers might not have felt the weight of our catastrophe, but at least they had collided with it. Beyond that, I quickly felt that I needed body armour or, ideally, a baseball bat with nails in it. Nobody here knows fucking anything, I wrote in a note to myself, perhaps unfairly assuming that these people were floating through life as I had for the last 39 years. Late one night, a drunk teenager planted himself in front of me on the pavement, asked for the time, and told me to lighten up. I worked through alarming visions of beating him senseless all the way back to our room.
The whole world seemed decadent. Elon Musk and Mark Zuckerberg negotiated the terms of a cage fight; disgruntled holidaymakers told the newspapers of their anger about an air traffic control problem that left them “marooned”. Meanwhile, I asked the neurologist if I could be right in my conviction that Max had looked at me. As she answered, she picked up a stuffed animal and thrust it suddenly at his face. He didn’t flinch.
But then, after we got him home, an August day commemorated by exclamation marks in my notes: sitting in his bouncer, Max contemplated a rattle being waved maniacally in front of his face, and smiled. When I flashed the rattle towards him, he blinked in surprise: his impassive response of a week earlier, it turned out, was no more than the artefact of a colossal opioid hangover. I felt forgiven for every shitty thing I’d ever done. For the first time, we let ourselves believe that Max was here, and that he would not be going away.
The diagnosis won’t be formally confirmed until he’s two years old, but in early 2024, we were told Max has cerebral palsy: that is, parts of his brain that should route instructions to his muscles had been permanently injured by the loss of oxygen when his heart stopped.
At first, they told us to be optimistic that Max would eventually walk and talk. On the five-point Gross Motor Function Classification System, where five denotes the most severe physical impairment, an assessment suggested he was almost certainly somewhere between level one and level three. “The difference between one to three and four to five is very significant,” one doctor said. “So that’s really good news.”
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But over time, it became clear that this lifeline had been thrown without any firm attachment at the other end. Max is nearly two now. It is still too early to reach any firm conclusions about cognition, although there are only good signs in the way he peers after someone when they leave, and laughs at peekaboo, and gets excited when he sees his milk bottle. He has so far been spared seizures or the need to be fed through a tube into his stomach, which are very significant pieces of good fortune. But on that early prediction, our hopes have been gradually distilled: from walking and talking to mobility and communication. From as “normal” a life as possible to as good a life as possible. And from independence, and doing everything for himself, to a more expansive definition of freedom.
It’s not that Max is a slow learner: it’s that he has so much more to learn. Where other kids seek a driving licence, he is tasked with the invention of the internal combustion engine. When his attention is elsewhere or he is asleep, he will move a limb with heartbreaking ease, but when he tries to do something, the signal gets scrambled. He makes a range of entertaining sounds to indicate his opinions, but the muscles in his mouth resist any instruction to form a consonant; he doesn’t roll from his front to his back much, or sit up without support, and he struggles to pick up objects or release them from his grasp. On that five-point motor function scale, we now think he’s probably a four. There’s a lot we can do to help Max, but we aren’t going to change that fundamental reality.
The word we kept hearing was “neuroplasticity”: the idea that the brain may be able to somewhat adapt to an injury, and forge new pathways for the blocked instructions, if given the chance through repetition. The potential for those changes is greatest in the first couple of years, so we felt hopeful, but also under intense pressure to do as much physiotherapy as possible.
For a while, we were overwhelmed. People would remind us, in case we didn’t realise, that we should be sure to make sure to be Max’s parents as well as his carers, something that’s a lot easier to say when your kid somersaults out of bed and plays the Fisher-Price xylophone like Evelyn Glennie. But gradually, things got better. The main reason for that is Ruth.
It’s a funny thing: you fall in love with a beautiful Canadian smartarse for her ability to make you collapse in laughter by enumerating your manifold flaws, and she turns out to be an indomitable hero. Ruth’s greatest peacetime virtues map neatly on to the job description for a top-tier parent to a kid with a disability: her fearlessness is now directed at intransigent bureaucrats instead of difficult landlords, her unwavering loyalty now applies to Max as well as her oldest friends, and her boggling adaptability now means that, as well as figuring out life on a new continent, she can sketch out your shared place in a totally different world.
I’m also not sure what we would have done without Rachel, a nanny and carer who has Coca-Cola for breakfast and uncooperative healthcare practitioners for lunch. Rachel, who dresses mostly in black, hates our dog and gets to work on an extremely illegal scooter, has worked with kids with disabilities for many years, and she’s seen plenty of things that make our situation look like a breeze. She is tough as tungsten, devoted to Max, and very good at physiotherapy routines.
Which is lucky, because there are a lot of them. Poor old Max: where most parents are cooing at their indolent progeny as they chuck another bowl of mashed banana on the floor, or dumping them on the rug with a pile of bricks and the vague instruction to follow their instinct, we were coaching him through a regime of baby sit-ups and commando rolls that brought to mind swelling trumpets and a young Sylvester Stallone.
In the early days, we considered several treatments that turned out to be ludicrous quackery. Now, alongside the mostly excellent NHS services we are granted by our postcode, we swaddle Max in intricate orthotic straps supposed to help with his alignment and proprioception, and stick little electrodes to his spine and glutes. We use up half our holiday to attend physiotherapy “intensives” that run for weeks at a time. Most of the rest last year went on trips to North Carolina, where Ruth got him on to a world-leading stem cell trial at Duke University. Max has spent a thrilling couple of months trying out an eye-tracking communication tablet, or Eyegaze, and taken to it with such magical ease that we hope the NHS will cover the brutal cost of getting him one permanently; we stick little laminated symbols to a board – “Eat”, “Drink”, “More”, “Finished” – to provide an analogue alternative in the meantime. Our house now resembles a steampunk scrapyard, full of industrial-looking equipment that helps Max in one way or another.
Nothing amounts to a miracle cure. I worry that we are guilty of trying to “fix” Max, and I feel queasy when I think about all the things we can afford to do that so many parents like us simply cannot. Max seems to be making real progress, but we are doing so many things at once that we have only a hazy sense of what helps and what doesn’t. Making him a one-baby randomised control trial would be more rigorous, but he would be past his period of maximum gain by the time we understood what was really worthwhile. I often think of that old marketing saw: “Half my advertising spend is wasted. The difficulty is I don’t know which half.”
I am telling you all this in part, I must admit to myself, because I don’t want your vision of me as a parent to be only that of the man who paid someone to feed his son in the night. And this, then, too: on our last day at the local hospital, an A&E doctor told us that when she heard what had happened, she could not understand how Max had made it in with a fighting chance. That she thought about us and Gina with admiration all the time, and that the three of us had undoubtedly saved his life, saved his life, saved his life.
Nobody knew exactly what to say, and a few people just drifted out of sight. A surprisingly large number of others concluded that the comforting thing to do was to draw a comparison between their own offspring’s minor ailments and what happened to Max. We heard about skin conditions, joint problems, minor bouts of jaundice, and an asthmatic who later went to university, which also happens to be my own tale of triumph over adversity. In one memorable case, someone told me about a toddler who carried the burden of a squint that ultimately resolved on its own. My son is a heavily sedated two-month-old and he still reads the room better than you, is what I later wished I had had the presence of mind to say in reply.
The line I hated the most, blandly repeated whenever someone couldn’t think of what to say, was that it must have been “scary”, as if we’d lost him in the supermarket. I cultivated a sense of grievance about these absolute doughnuts, who made me feel like a woman on a terrible Hinge date: just ask me some questions! Their clucking seemed to be a way of pulling their own coat tighter against the storm, instead of offering it to us.
In my head, London was full of rubbernecking acquaintances thinking mostly about how lucky they were, and eliciting lurid details about our mental collapse from the people who cared enough to come and see us. I liked to speculate to Ruth about how they were spending their evenings. Life is so precious – hold them close tonight, these fictional villains were texting their group chats, before turning back to their takeout and Grand Designs, or drafting another Instagram story going out to all the new parents finding it so tough: You’ve got this!!! I wanted to tell them we viewed their version of parenthood, their challenges with nap schedules and self-weaning, with the same righteous condescension as they viewed people who didn’t have kids. I wanted their children to be eaten by lions, despite the pastel anti-lion cages they had installed around their beds.
I don’t feel that way any more. The truth is that it was very hard to say the right thing to me last year. People’s thudding comparisons to their own robust brats were, above all, pretty funny. A squint, come on. I partly held on to them because they gave me something to fulminate about to the people I was really intimate with, not because they had done us any harm.
I wish, now, that I had spent more time reckoning with the devotion of the people who loved us, all the more bewildering because I was so bad at asking for it. Our families’ sustaining presence at our sides; the dozens of people who signed up for a meal train that lasted 64 days and only stopped because everyone agreed I was getting alarmingly fat; the friends who took on deadening logistical roles, unpacked our house for us, and just would not bloody leave us in peace. I will never forget finishing lunch at a friend’s and realising that one of our hosts had taken Max to the next room, where I found him companionably installed in front of Mr Tumble with the other kids, wholly included without any special effort on our part for the first time. Or hearing second-hand about Ruth’s best friend finding a toy figurine in a wheelchair to normalise Max’s likely future for her own son, a bridge that she built without ever telling us herself. None of it could really help, in one sense. But it made it impossible to persist in my conviction that we were utterly alone.
In the first few months, the fact of Max’s injury mostly had to be taken on faith. I’d never really spent much time around babies before, and everything he did looked perfect to me. I enjoyed the way friends who were anxious not to seem like they were scrutinising him for flaws traduced their own children for our benefit, too. I’m so sorry about Norman, they’d say, unprompted: he’d eat his own shit if he wasn’t too stupid to know where his arse is, he’s pond scum, he’s pathetic, he should be in a secure facility.
Gradually, though, the impact became unignorable. Kids with cerebral palsy often have a lot of trouble in the midline, the central zone where so many of life’s vital activities take place: to hold a toy proffered beneath his eyes, Max would extend his arms to their widest wingspan, then inch one hand gradually towards the centre, saying OOOH as he went, until you met him with the prize halfway. I always thought of 2001’s shuttle, docking with a space station to the strains of a Johann Strauss waltz. There was such charm and determination in the way he worked against the grain of his disobliging neural pathways: I knew this wasn’t how it usually worked, but the effect was much too lovely to feel altogether sad.
By last summer, we thought we were robust enough to go away for a few days with friends whose son had arrived around the same time as Max. Timmy was a sweet little guy, and as it turned out I resented him deeply, in the way you resent the Maldives sunset your friend posts on social media while you sit at your desk.
One morning, as I gave Max breakfast in his supportive chair, Timmy staggered into the kitchen holding a plastic bottle, dropped it, picked it up again, laboriously unscrewed the lid and put it in his mouth, picked up a piece of cutlery from the floor and tapped it on the table. I tried to count the little gifts of information about the workings of the world that this short drunkard would have taken from that sequence, and found myself crying quietly. I wanted to shout for everyone else to gather round, in the way you do when a showy closeup magician presents himself at a wedding: Gordon, get over here! You’ve got to see what this kid can do with a spoon!
As a white man named Archibald, I always suspected I was missing something about the impact of privilege; now it became viscerally clear. In the autumn, as we continued our dutiful re-entry to the world, a friend listened attentively to an update on Max’s progress and then, after the conversation had moved on, drifted into a paean to the pleasures of later childhood. His own son was reaching the age where they can happily wander to school on their own, he said dreamily. I suppose he had no inkling, as I smiled through his description of independence as an indispensable part of being a fully realised person, that the only thought in my head was how that would never be the case for Max.
On one of those trips to North Carolina, we waited at the boarding gate, showing Max a video on Ruth’s phone. A sweet old lady came over and complimented us, correctly, on how handsome Max was; then she asked whether we ought to be showing him television at his age, reminded us how important these years were for his development, and went back to her seat.
As we waited for the flight to board, and muttered to each other about how totally she could go and fuck herself, I felt an unprecedented compulsion to do something. I rehearsed what I wanted to say with Ruth a couple of times, and then went and found her.
“Hi, sorry, I just wanted to mention something,” I gabbled. “It’s just to say our son spends more time with a screen than other babies because he has a disability that makes it very difficult to play with toys. So maybe if you see someone parenting in a way you don’t approve of, you should think about what else might be going on.”
She looked a bit stricken and said, “No, dear” twice, and I went back to my seat, trembling with the thrill of it. “He has a disability”: I had never said that to a stranger before. Max took a giant shit, and burped beatifically. Then an English guy in a gilet loudly called his pimpled son a “fucking retard”, and I stared furiously at my shoes.
A few weeks ago, during the usual battle of wills over dinner, Max did something very surprising. I reloaded the spoon, and he did it again, so I put my camera on, and asked Ruth to come over and give an opinion. We offered him another chance to accept a bit of dinner and, as he often does, he puckered his lips and turned away. Then, in something like desperation as I chased him with shepherd’s pie, he put his tongue to the roof of his mouth, and the great wail that followed started with a consonant. Ruth burst out laughing. I turned to the camera, triumphant and beseeching. “Come on!” I said. “That’s definitely ‘No’!”
Everyone I sent it to enthusiastically agreed. I floated around for a few days on the strength of it. Since then, though, the incident has drifted out of view. Max communicates, loudly, all the time, but I can’t honestly say that anything since has engendered the same confidence that he’s deliberately forming a consonant. Maybe we projected the whole thing. What’s surprising is how I feel about it. If you had explained this sequence to me a year ago, I think I would have sunk into despair. Today, the honest truth is that whether this turns out to be a first step or a false dawn, I simply do not care.
Versions of the same question come up a lot in the accounts I have read from people with disabilities and their parents: would you undo it? In one sense, it’s an idiotic query, as relevant to reality as the matter of who would win in a fight between 100 duck-sized horses and one horse-sized duck. But it is hard to put away.
I don’t mean to be glib. If I could press a button that made Max’s life easier by granting him everything he has been denied, I would do it in a second. But if the question is whether I would take myself back to being the genial ignoramus of two years ago, I’m much less sure. I wish this had never happened, of course. But life would feel thin without it. I understand things about myself and the world now that I can’t wish I didn’t know. All of the noise about what on earth I’m here for has melted away. I think I am a better person, if a sadder one.
The realisation that brings clarity is this: the more time passes, the more the hypothetical about undoing it becomes an invitation to wish Max away, to erase all the things that I love about him. When I watch him using his Eyegaze with such cheerful skill, I get so carbonated with pride that I feel like I’m having a panic attack. If Max never speaks, that isn’t frightening any more; if he ends up turning out tongue twisters, I’m curious to see what that’s like, too.
I don’t remember the recitation Ruth and I made on that ambulance ride, to be honest, but I can supply a new version in a second. The YIKES grimace he pulls when he’s at the apex of his arc on a swing and absolutely unsure about whether this is a good idea. The high kicking glee of a few minutes in his walker. His Godzilla thirst for trampling on my face if I hold him in the air. His turds, somehow. His amazement when he realised it was the button he was pressing that made the plastic frog burp bubbles. The warm weight of him in my arms as I rock him to sleep, and the way he gazes at me when I sing him a song. When I think about my question at Great Ormond Street now, I think I was right not to ask about cognition: that his personhood is not subject to medical assessment. And that Max was the boy who went away, but he is also, thank God, the boy who came back.
There was a time when choosing this Max over some theoretical other felt like a betrayal: I had a recurring idea of this other possible boy, stuck in limbo, wondering why I had abandoned him. He still comes to me, sometimes. But there is nothing at all apart from the things that happen. To ask if I would undo it is to ask if I want some other kid. I don’t. I want this one. And so I have to let that figment go.
Sometimes, people tell us to hold on to hope, or to believe in Max. But those invitations miss the point completely. We don’t have to believe in Max, because he’s right in front of us, farting. We can’t invent hope. But we can find a way to live without faking it, to forge something good out of this anger, and this love. In that determination, we can create the fertile soil for hope to take root when it decides to arrive.
It is too soon to say if this feeling is the beginnings of a philosophy, or a fantasy. The three of us are only in the foothills of what I now understand to be our real life. How long until we have to leave our three-floor terraced house? How will our backs cope as Max grows? How will it feel as his disability becomes more visible to others, and as he starts to understand it himself? Will he want to live with us or move out one day? And what happens when we die?
To this list of mine, Max will add a thousand questions of his own. The answers to all of them will certainly come. In the meantime, he and Ruth are downstairs, engaged in a lively discussion about what’s for dinner. That is the next question, and I want to help them answer it.
Some names have been changed.
