Chapter 1
RACHEL
You know the worst thing, that possibility you dread, the terrible what-if that keeps you up at night, heart racing, palms icy, the one thing you tell yourself will never happen, because it can’t, it just can’t, you wouldn’t survive it, you wouldn’t know how?
Well, sometimes it does happen. And you do survive it, even if you can’t understand how your body is still functioning—heart thudding steadily, breaths in and out, even your stomach gurgling, I mean, how? How can my body feel hungry when a doctor—a doctor I’ve put all my trust and hope in for over two years—has given me the worst news that he possibly could?
No further tests. Those three words feel like a weapon wielded cruelly, a physical violence perpetrated against me, against my daughter. Emily. She is not quite six, and she has eyes like stars and a laugh that bubbles up from inside her and makes you smile in wonder, although I haven’t heard it in over a year. She likes rabbits and Peppa Pig and would stay on a swing for as long as she could, if I let her. At least, she used to like all those things. The truth is, I don’t know anymore.
I stare at the doctor as my mouth opens and closes. My body’s functions might all be ticking along nicely, but my thoughts are frozen, and I can’t think to speak, not even a syllable. Even though some part of me has known we are marching inexorably towards this moment, everything in me resists.
“But…” I finally manage, helplessly, the word leading nowhere. I shake my head. Words still fail me as my heart continues to beat, thud after relentless, uncaring thud.
“I’m sorry,” the doctor says. Greg Brown. I started calling him Greg a few months ago, even though it felt a little familiar. A bit weird. I still did it, because the truth is, I see more of Greg Brown, pediatric neurologist, than I do of anyone in my personal life, even my now-ex-husband, or my mother, who lives fifteen minutes’ drive from my house. Greg and I have history. Too much history.
“I really am sorry, Rachel,” he says, and I know he means it. The corners of his mouth are turned down, his eyes soft and sad, his curly gray hair thinning on top and looking messier than usual. His hands are knotted together in his lap. I wonder when he started calling me Rachel. When Emily had her first grand mal seizure nearly two years ago? When she lost the ability to talk at all, sometime in the last year? Or was it later, when she drifted into a coma just over four months ago, her body seeming to shut down, like someone turning the lights off in a house? One by one by one, and then, seemingly suddenly, everything is dark.
“But I don’t understand.” My voice wobbles and I take a deep breath, willing myself not to cry. Crying is weakness. It shouldn’t be, but the fact is nobody likes tears. People look away; they’re embarrassed, or they pretend you’re not crying, even when your shoulders are shaking and the sobs are audible. It seems a kindness to ignore it, but it isn’t. It’s cruelty, or perhaps just indifference. I don’t know which is worse.
I have wanted to cry many times over the last three years, and I have learned it’s better to save the tears for when I am alone in the shower, or bent over the sink, washing the dishes, or lying curled up like a question mark alone in bed. I needed to hide them, even from James, because just like everybody else, my husband grew tired of my tears. Or maybe he just grew tired of me.
“Emily’s care team has come to the conclusion that further treatment or testing would not be advisable at this stage.” The words sound rehearsed, but the tone is heartfelt. I know it’s been a long journey to this decision; I know Greg and his team have tried everything—every scan, every experimental drug, every possible therapy. Nothing has worked. Nothing has shifted the horrible non-diagnosis that Emily has always had. And yet still I resist, because not to is inconceivable.
“How could it not be advisable?” My voice rises, strident, worse than crying. I am turning into the angry parent, and in the three years since we began this terrible journey, I have tried so hard not to be that.
I’ve been the good mom, the one who always says thank you, who brings cookies and boxes of chocolates to the nurses, who remains upbeat even when I’ve felt like staggering or just lying down on the floor of Dr. Brown’s—Greg’s—office and curling up into a ball.
I’ve treated Greg like the leader of an expeditionary force, a fearless explorer, braving this new and uncertain terrain. What can I do to help? How can I support you in this endeavor? I’ve been so good, and now this? He’s just walking away, along with all the other specialists and surgeons, nurses and neurologists, everyone who has been trying to figure out what is wrong with my daughter? They just don’t care anymore?
Suddenly I am furious; the rage courses through me, a cleansing river. No. I will not allow this to happen. Emily is five years old. She has her whole life in front of her. She must.
I clench my fists, open my mouth, but Greg gets there before me.
“Rachel, I really am sorry to have to tell you this.” He smiles at me, sorrowfully, and I believe he is sorry, of course he is, but it isn’t enough. He places his hands palm down, flat on his desk, next to Emily’s file. “I know it is particularly difficult in cases like these, where there are so few answers.”
“There are no answers.” I sound fierce, bitter, and I try to rein myself in. There’s no point antagonizing the one person who has the power over my daughter’s care. Her life.
“I know that’s been very frustrating for you.”
Frustrating? He makes it sound like a paper jam in a printer, a bit of morning traffic. I know he doesn’t mean it that way, Dr. Brown has been great—with has being the operative word, it seems. Past tense. Looking at his slumped shoulders and tired eyes, he is a far cry from the neurology expert with the firm handshake and purposeful stride who assured James and me that he was going to get to the bottom of this, two and a half years ago.
He was going to figure out why Emily was slurring her speech. Getting migraines, at only three years old. And later, when she started to stumble, and had seizures, and began to lose her vision—yes, he was going to get to the bottom of all of that, too.
But he didn’t. He failed, and I don’t blame him for that. How can I? There were so many tests, so many attempts at diagnosis. Brain scans and blood work, MRIs and mental and physical assessments, on and on and on, the cycle of fear and hope, followed by more uncertainty, tempered by a treacherous relief—at least it’s not that. Neuroblastoma. Moyamoya disease. Metachromatic leukodystrophy. There are so many terrible and rare conditions out there, and Emily doesn’t have any of them. But no one knows what she does have.
Dr. Brown has done his best for Emily, I know that, and I don’t blame him for not being able to diagnose her condition, whatever it is. But I can blame him for being ready to stop trying. For giving my daughter up as a lost cause, when she has so much to fight for. To live for.
“Sometimes this happens,” Greg says. He’s said it before, but not in quite so final a tone. “Boston Children’s Hospital is one of the leading treatment and research centers for neurological conditions in the entire world. We have more resources and research at our disposal than just about anywhere else.” He spreads his hands out, a gesture of sorrowful defeat. “But we haven’t been able to diagnose Emily past SWAN, as you know.”
Of course I know. SWAN, Syndrome Without A Name. The non-answer, the endless question that constantly torments me even as it offers that treacherous sliver of hope. It’s impossible to explain the bizarre mixture of hope and fear you have, when there is no diagnosis. When there is no diagnosis, it could still be some weird virus, an infection no one caught that can be quickly cured. When there is no diagnosis, it could be the newly discovered fatal disease that only one in five million children get, and your child is the one that has it. And so I veer wildly from one to the other, one moment sure that Emily will wake up one day and smile at me—she has to—and the next half expecting this to be her last. It’s overwhelming and exhausting, like living with an intense adrenaline rush and a body shot of Novocain all at the same time.
I take a deep breath. “But why stop trying to find out, since you don’t know?”
“Rachel, Emily has been in a state of unresponsive wakefulness for four months, with no visible improvement.” He shakes his head sadly. “As you know, from her recent MRI, her brain activity has been seen to be minimal for some time.”
“Forty percent is not minimal,” I flash back before I can stop myself. He sighs—a sound I hate. “So what are you saying?” My voice trembles. “It’s not worth trying to find out what she does have?”
“I’m saying I no longer believe Emily is a viable candidate for continued testing,” he says steadily. “I’m not giving up on her, Rachel, although I can understand why you think I am. If a new drug that I think would help Emily became available, I would put her forward for a clinical trial.”
“But you don’t think that’s likely.” I sound bitter.
“No,” he agrees heavily. “I’m sorry, but I don’t.”
I can’t believe it’s going to end like this, after years of searching for answers, desperate for a diagnosis. I held onto hope, for all that time. “Dr. Brown, please don’t do this.” My voice catches; I am begging. “Emily is only five.”
“I know.” He looks emotional, swallowing hard, but I am not moved. Not now. He might feel badly; he might go home tonight, raking a hand through his hair as he reaches for a beer. I had to let a patient go. It was tough. But he can’t feel it the way I do, with every fiber of my being, every last wrung-out corner of my heart. Of course he can’t. I wouldn’t expect him to, and yet I want—I need—more than this.
“I and the rest of the team have done our absolute best by Emily,” he insists, a throb of feeling audible in his voice. “I promise you that. But her condition has only worsened since she first came here, and her consistent lack of progress suggests an irreversible decline in her mental and physical capabilities. The team agrees that the best thing for her now is to be referred to the pediatric palliative care unit.”
He takes a glossy brochure and pushes it across the desk towards me, but I jerk away, as if it is covered in spikes, hissing like a snake, “I don’t want a brochure.”
“I know you don’t,” he says quietly.
We wait, the silence heavy and oppressive. Dr. Brown’s hands are back flat on the table. I can’t think of him as Greg anymore now. I won’t.
I take a deep breath, and it shudders through me. He registers the sound, the grief in it, and simply waits.
He must have had a thousand moments like this one. Pediatric neurology is not a happy field. Not a lot of positive outcomes on this ward. But this? Palliative care? That’s for old people, surely. People with terminal cancer, people who have already lived their lives. Not Emily, who has hair like blond cotton candy, who is only three and a half feet tall, who is five. Five. This is not right. I can’t let this happen.
But I don’t think I am being given a choice.
After another few seconds of silence, I finally take the brochure. I flick through it, my mouth twisting cynically. Massage rooms and music therapy. Caring doctors with white coats and sympathetic smiles. Lots of couched language—family-centered, offering relief, based on need not prognosis. I hate it all. I put the brochure back down on the table.
“Surely there’s something more you can do.” There has to be. Because I know as soon as Emily leaves this ward, this place where things happens and tests are done and results are still a possibility, no matter how slight, her life might as well be over. Instead of medicine, I’ll need a miracle. But maybe I needed that all along. Maybe Emily did. I can’t bear the thought.
“I’m truly sorry,” Dr. Brown says. “Really. I wish…” He stops, shaking his head. This is not the time for wishes.
“Is there really nothing else you can do?” I am caught between despondency and rage. “No tests… no scans…” I am grasping at flimsy straws, I know that. I see it in his face.
“The entire team is in agreement about this decision, Rachel, and it is not one we’ve made lightly, I assure you.”
I know it can’t have been, but does that make it any easier? I glance down at the brochure again. It looks like a nice place, but also an awful one. A place where people go to die.
“Dr. Brown…” I look up at him, seeing his compassionate gaze, his hands folded in front of him. I swallow. I don’t want to ask this. I don’t want to know. And yet I have to. “What, in your opinion, is Emily’s prognosis?” I force myself to ask. “I mean… how long will she be in this…” State of unresponsive wakefulness. That’s the current, politically correct term; the old one is a persistent vegetative state, which I hate. It makes my daughter sound like a thing, a zucchini stuck in a bed, and some of the medical team still use it. Dr. Brown makes sure not to, but I don’t really like any of the words they use, the clinical way they say them, even though I know they have to be that way. “I mean, I know you don’t think she’ll get better.” The words are jagged splinters sticking in my throat.
Ever since Emily slipped into a coma first, and then deeper still into the state she’s now in, I’ve been trying to be realistic. I’ve known she’s not going to open her eyes one day, smile sleepily, and say “hi, Mommy.” I know that, and yet right now I realize I can tell myself I’m being realistic and still fool myself.
I have told myself all along that I was prepared for setbacks, for permanent damage, for Emily to never speak or even move again. I was, and yet right now I know I wasn’t. Because, all along, I’ve been hoping for the sudden diagnosis, the miracle cure, or at least some treatment. Something to make things just a little bit better, instead of this downward spiral towards… I can’t bear to think it. I won’t. Not yet.
“Emily could be in her current state for years,” Dr. Brown says quietly. “Although the average life expectancy of someone in her condition is usually under five years.” He pauses. “Unless you decided her quality of life did not merit continuing with life-sustaining measures.”
It takes me a moment to realize what he’s saying. “You mean… kill her?” I can barely get the words out. Did a doctor really say that?
“No, not that,” he answers swiftly. I wonder if he’s thinking about lawsuits; it’s so important to use the right words. “When parents or relatives decide the quality of life is not worth continuing with life-sustaining measures, they can agree to withdraw the gastric feeding tube, for example, from the patient in question.”
“Starve her.” I am disbelieving, icy.
“She would be made entirely comfortable.” Comfortable? Is that even a word he can use here? “Obviously,” he says after a very uncomfortable pause, “that’s not something you need to consider right now.”
But I will have to one day, seems to be the implication. One day he’ll encourage me to make that decision.
My stomach churns and I rise from my seat. “I’ll need to discuss all this with James.” He should have been here, but he had a work meeting and didn’t realize how important it was. Neither did I. “When we’ve had a conversation, we’ll be in touch.” I don’t know what that conversation will sound or feel like, because even though we are determined to be amicable, James and I don’t always agree about Emily, about her care. He trusts the doctors more than I do; he’s willing to simply go along. It hasn’t mattered so much until now, but I have to hope—I have to believe—he will agree with me on this.
“I am sorry, Rachel,” Dr. Brown says yet again. How many times has he uttered those useless words? “Do talk to Emily’s dad, and then get back to me. We’re hoping to move Emily to the palliative unit next week, as long as her condition remains stable.”
I nod tersely, unwilling to verbalize my acceptance of that plan. I could still fight it. There has to be some way I could fight, some legal avenue James and I could go down.
I walk stiffly from the room, along the corridor to the ward where Emily has been for the last eight months, since a chest infection meant another hospitalization. She was only supposed to be in for a few weeks, until her condition stabilized, but even after she recovered from the infection, her condition continued to spiral downwards, until she slipped so deeply into a sleep, she has never seemed to wake up.
Sometimes I torment myself with my lack of memory of the last time Emily spoke. The last time she smiled or reached for my hand. If I’d known it was the last time, would I have remembered? Would I have held onto it? I’m sure I would have, but, as it is, I can’t remember any of it at all.
It all happened so gradually, an erosion of ability, of possibility, that I was desperate not to acknowledge. When she first started slurring words at only three years old—well, she was young, and children developed at different stages. Then she started stumbling, and having terrible joint pain, as well as migraines. For that whole year, Emily was in and out of preschool, going for tests, scans, therapies. For that whole year, I held on to the hope that this could be solved.
Then, just after her fourth birthday, when we took her to Cape Cod for a week of sun-soaked days on the beach, she had her first grand mal seizure. I think I knew then that we’d entered new territory, an unknown shore, and there was no going back.
A nurse looks up from her station and smiles at me, the curve of her lips fleeting and sympathetic. An aide is pushing a trolley slowly down the hallway; I hear its wheel squeak, and from another room I hear a mother’s murmured voice, the ensuing silence. This is a ward of children who are in similar states to Emily, children with neurological conditions, diagnosed or not, that are serious, untreatable, and in many cases terminal.
Children in comas, temporary or not; children with brain damage of varying degrees; children, like Emily, who have moved from a coma into a state of unresponsive wakefulness, the more hopeless scenario, as I have come to discover, because it signifies, as Dr. Brown pointed out, minimal brain activity. The scenario where you wonder if they’re awake, because they’re breathing, chest rising, eyes opening and closing, and when you squeeze their hands, sometimes they squeeze back. It’s not very much to pin your hopes on, but you do. Of course you do. You pin them all.
Although, the truth is, I don’t know the conditions of the other children on this ward anymore. I stopped chatting to the other parents a while back, because I just couldn’t. I don’t think they could either. We all have enough sorrow in our lives already; we don’t need the burden of bearing someone else’s, not even for a five-minute conversation.
Now I breathe in deeply the smell I’ve become so used to—antiseptic and stale at the same time. I know this place—the bright lights, the murmured voices, the heavy doors, the sunlight that streams through the window and yet feels so far away, the view of the parking lot, the people moving below, some with balloons, others with wheelchairs, everyone living out their hopes and griefs on a silent, sober stage.
Now, as I come into the room, she lies in bed, her eyes closed, her breathing regular. Sometimes her eyes are open, and it almost feels as if she can see me. Her gaze will track to the door and back, almost as if she’s trying to tell me something. What if she is?
She has been able to breathe on her own since she recovered from the chest infection, and besides the monitor registering her heartbeat and the feeding tube, she looks normal, a word I’ve started to hate. What is normal? Who gets to decide that?
“Hello, my darling girl.” I keep my voice cheerful even though sometimes it feels like the hardest thing I’ve ever done.
I move around the room, touching her shoulder, adjusting the blinds, twitching a bedsheet. Anything to feel busy and useful, to lend a bizarre sort of normalcy to this situation.
Looking at her now, if you didn’t know any better, you’d think she was just sleeping. You’d think she’d wake up any minute, blinking sleepily like I try so hard not to imagine, smile at me and mumble something. Hello, Mommy. Or even I’m thirsty. Or maybe where am I? I’m not picky about what she might say. I’m not picky at all.
But that hasn’t happened, and it’s hard to hold onto the hope that it might, even as I guard against wanting something impossible. Sometimes I think I’m not being fair to Emily, to keep my expectations low. Shouldn’t we want the absolute best for our children? Shouldn’t we do everything we can to give it to them? Isn’t that what being a parent, a mother, is all about?
Or is it about this, sitting quietly next to a girl who might never truly wake up, and talking about all the things she might miss, but just can’t tell us so? The most recent studies have shown that patients in this state might actually be more conscious than we realize, something that is both wonderful and terrifying.
Might, James said, with such awful emphasis. You can’t trust these studies, Rachel. You can’t pin all your hopes on them, on one research experiment that tells you what you want to hear, when there are so many others with different results.
But then what can you trust? Where do you find hope?
I take Emily’s limp hand in my own; it is small and warm and so terribly lifeless. I can’t let them do this. I can’t let them give up on her. If they stop looking for a diagnosis, they’ll never find a cure. If they write her off as someone who is only going to get worse, there’s no way she’ll ever get better. I’m not willing to consign my only child to being dismissed and then dying. I’m not ready, and surely, surely, neither is she.
Gently, I squeeze Emily’s fingers. It doesn’t always happen, but sometimes I feel something back, a light pressure, a barely-there squeeze. I thought I was imagining it at first, wishful thinking, but then Dr. Brown told me that patients like Emily can exhibit natural reflexes. He was quick to tell me it was nothing more than that, gently warning me that it didn’t mean anything.
But if it was just a reflex, why doesn’t it happen every time? Despite his well-intentioned warnings, I chose not to believe him. It’s more than a reflex to me.
And so, I squeeze her fingers again, gently, like a question. Are you there, baby girl? Is some part of you still with me, still holding on?
I hold my breath and wait, pray, hope, and like the tiny miracle I know it is, after a few endless seconds, she squeezes back.
Chapter 2
EVA
One line. One damn, damning line. I push my high-heeled foot down on the pedal to lift the lid of the bin, wrap the test in toilet paper and throw it away. Then I leave the toilet stall at work and wash my hands, gazing firmly at my reflection—highlighted hair, blue eyes, determined smile that drops as soon as I look away. Yes, this is me.
A woman I know vaguely from another department comes into the bathroom, giving me a friendly smile, and I force my lips upwards again, an act of sheer will. I am fine.
Briskly I dry my hands and turn away from the sink. My heels click on the tile floor, a pleasing sound. I straighten my shoulders, lift my chin. I am fine.
This is the fifth pregnancy test I’ve taken. The fifth time I’ve let myself hope just a little, because my period is a day late and that twinge in my midsection might be a symptom. Or it could just be a menstrual cramp, which invariably it is.
Every cycle, I tell myself I won’t take the test early this time. Why waste the money? Even when you buy the cheap strips on Amazon instead of the top-drawer digital tests from CVS, month after month it still adds up. Pregnancy tests are expensive, and negative ones suck. So why put yourself through the pain? Hope followed by disappointment. Much better, much easier, not to hope at all. Except hope, I’ve found, doesn’t work that way, no matter how hard I try.
Back at my desk, I pull my laptop towards me and do my best to immerse myself in work. Try not to think about how maybe I did take the test too early. If I swing by CVS on my way home from work, I could get one of those more expensive tests, the ones that promise they are accurate just ten days after ovulation. Then I’d really know.
See how it goes? Hope. Disappointment. Hope.
I focus on my computer screen and the latest results of the digital ad campaign we ran for our new line of vegan, ethically sourced lipsticks. I work for Maemae, a boutique company that specialises in organic, cruelty-free, high-end beauty products, the current “crème de la crème” of the natural beauty world. For this campaign, I decided to focus on how the lipsticks’ ingredients were ethically sourced in challenged areas of the world. People are meant to care about that sort of thing nowadays, but judging from the results of the ad, they don’t. Mara, my boss, isn’t going to be pleased with the lacklustre results.
I’ve been with Maemae almost since they started seven years ago, founded by Rio Adachi, a Hawaiian-Japanese businesswoman with an amazing drive and focus. She’s moved onto an organic sports clothing line in LA, but she comes to our office once a year to check how things are going and give us all a boost, filling the open-plan office with her crackling energy. From the way she talks, you’d think we were all working on the cure for cancer rather than overpriced, if decently made, cosmetics, and for a long time I felt as if we were. I felt like an intrepid explorer, fearlessly on the forefront of a brave new world. Now, six and a half years later, I can’t help but think I flog makeup online.
I feel a twinge in my belly. Was that a symptom? Or is my period coming? Why am I still hoping? Not that I’d admit that I was, to anyone, not even to my husband, who has taken each month’s disappointment in his stride.
He doesn’t share my urgency for a baby, and why should he? He already has a child, has already experienced the love, the joy, and, sadly, the terrible grief of parenthood. I understand why he’s wary. Anyone in his situation would be. But I tell myself it will be different this time round… for both of us.
Now with my fingers still resting on the keyboard as I gaze unseeingly into the distance, the noise fading away around me, I focus on the present—my work, my marriage, my pregnancy, because one day it’s go. . .
We hope you are enjoying the book so far. To continue reading...
Copyright © 2024 All Rights Reserved
Please log in to recommend or discuss...
