“A beautifully written novel, compelling and clever, tender and true. I can’t stop thinking about it.”—Liane Moriarty
“Tailor-made for book clubs and for fans of Jodi Picoult.”—Publishers Weekly
Max and Pip are the strongest couple you know. They're best friends, lovers—unshakable. But then their son gets sick and the doctors put the question of his survival into their hands. For the first time, Max and Pip can't agree. They each want a different future for their son.
What if they could have both?
A gripping and propulsive exploration of love, marriage, parenthood, and the road not taken, After the End brings one unforgettable family from unimaginable loss to a surprising, satisfying, and redemptive ending and the life they are fated to find. With the emotional power of Jodi Picoult's My Sister's Keeper, Mackintosh helps us to see that sometimes the end is just another beginning.
|Publisher:||Penguin Publishing Group|
|Product dimensions:||5.90(w) x 8.90(h) x 1.50(d)|
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Dylan was six hours old when I noticed a mark behind his left ear the size of a thumbprint. I lay on one side, watching him, my free arm curled protectively across his body. I watched his perfect lips quiver a breath, and I traced my gaze across his cheeks and round the whorls of ears still too new to have found their shape. And then I saw a thumbprint the colour of milky tea, and I smiled because here was something totally new and yet completely familiar.
"He's got your birthmark."
I showed Max, who said He's definitely mine, then, and tiredness and euphoria made us laugh so much the nurse popped her head round the curtains to ask what was the commotion. And when Max had to leave, and the lights were turned low, I touched the tip of my finger to the milky-tea mark that linked the two people I loved more than anything else in the world, and thought that life could never get more perfect.
There's a low keening from somewhere on the ward; an accompanying murmur from a parent up as late as I am. I hear the squeak of rubber shoes in the corridor, and the bubble of the water cooler releasing a dose, before the shoes take it back to the ward.
I rest a hand gently on Dylan's forehead, and stroke it upwards. His hair is growing back in fair wisps, like when he was a baby, and I wonder if it'll still be curly. I wonder if it'll turn brown again, like it did when he hit two. I trace a finger down his nose, careful not to touch the narrow tube that snakes into one nostril and into his stomach.
The endotracheal tube is wider than the feeding one. It pushes between Dylan's lips, held in place by two wide strips of tape, one across his chin, and one above his lips. At Christmas we brought in the sticky moustaches that fell from our novelty crackers, and chose the curliest, most extravagant for Dylan. And for a few days, until the tape grew grubby and needed changing, our almost-three-year-old boy made everyone around him smile again.
"Is it OK to touch him?"
I look across the room, to where the new boy is; to where his mother, anxious and uncertain, hovers by her son's bed.
"Of course." The charge nurse, Cheryl, smiles encouragingly. "Hold his hand, give him a cuddle. Talk to him." There are always at least two nurses in here, and they change all the time, but Cheryl is my favourite. She has such a calming manner I'm convinced her patients get better just from being in her presence. There are three children in this room: eight-month-old Darcy Bradford, my Dylan, and the new boy.
The name Liam Slater is written in marker pen on the card stuck to the end of his bed. If the children are well enough when they're admitted to intensive care, they get to choose an animal sticker. They do the same on the nameplates above the pegs at Dylan's daycare. I chose a cat for him. Dylan loves cats. He'll stroke them oh so gently, and widen his eyes like it's the first time he's felt something so soft. Once a big ginger tom scratched him, and Dylan's mouth formed a perfect circle of shock and dismay, before his face crumpled into tears. I felt a wave of sadness that he would forever now be wary of something that had brought him so much joy.
"I don't know what to say," whispers Liam's mum. Butterfly breaths flutter her throat. Her son is bigger than Dylan-he must be at school already-with a snub nose and freckles, and hair left long on top. Two thin lines are shaved into the side, above his ear.
"Pretty cool haircut," I say.
"Apparently everyone else's parents let them." She rolls her eyes but it's a pale imitation of a mother's frustration. I play along, giving a mock grimace.
"Oh dear-I've got all this to come." I smile. "I'm Pip, and this is Dylan."
"Nikki. And Liam." Her voice wobbles on his name. "I wish Connor was here."
"Your husband? Will he be back tomorrow?"
"He's getting the train. They get picked up, you see, on a Monday morning, and brought back on Friday. They stay on-site during the week."
"Plasterer. Big job at Gatwick airport." She stares at Liam, her face ashen. I know that feeling: that fear, made a hundred times worse by the stillness of the ward. There's a different atmosphere on the cancer ward. Kids up and down the corridors, in the playroom, toys all over the place. The older ones doing maths with the education team, physios helping reluctant limbs behave. You're still worried, of course you are-Christ, you're terrified-but . . . it's different, that's all. Noisier, brighter. More hopeful.
"Back again?" the nurses would say when they saw us. Soft eyes would meet mine, carrying a second conversation above the lighthearted banter. I'm sorry this is happening. You're doing so well. It'll be OK. "You must like it here, Dylan!"
And the funny thing was, he really did. His face would light up at the familiar faces, and if his legs were working he'd run down the corridor to the playroom and seek out the big box of Duplo, and if you saw him from a distance, intent on his tower, you'd never know he had a brain tumour.
Up close, you'd know. Up close you'd see a curve like the hook of a coat hanger, across the left side of his head, where the surgeons cut him open and removed a piece of bone so they could get at the tumour. Up close you'd see the hollows around his eyes and the waxy tone of skin starved of red blood cells. Up close, if you passed us in the street, you'd flinch before you could stop yourself.
No one flinched in the children's ward. Dylan was one of dozens of children bearing the wounds of a war not yet won. Maybe that's why he liked it there: he fitted in.
I liked it, too. I liked my pull-out bed, right next to Dylan's, where I slept better than I did at home, because here, all I had to do was press a button, and someone would come running. Someone who wouldn't panic if Dylan pulled out his Hickman line; someone to reassure me that the sores in his mouth would heal with time; to smile gently and say that bruising was quite normal following chemo.
No one panicked when I pressed the button that last time, but they didn't smile, either.
"Pneumonitis," the doctor said. She'd been there for the first chemo cycle, when Max and I fought tears and told each other to be brave for Dylan, and we'd seen her on each cycle since; a constant over the four months we'd spent in and out of hospital. "Chemotherapy can cause inflammation in the lungs-that's what's making it hard for him to breathe."
"But the last cycle was September." It was the end of October. What was left of the tumour after surgery wasn't getting any bigger; we'd finished the chemo; Dylan should have been getting better, not worse.
"Symptoms can develop months afterwards, in some cases. Oxygen, please." This last was directed to the nurse, who was already unwrapping a mask.
Two days later Dylan was transferred to paediatric intensive care on a ventilator.
The atmosphere in PICU is different. Everything's quiet. Serious. You get used to it. You can get used to anything. But it's still hard.
Nikki looks up. I follow her gaze to where it rests on Dylan, and for a second I see my boy through her eyes. I see his pale, clammy skin, the cannulas in both arms, and the wires that snake across his bare chest. I see his hair, thin and uneven. Dylan's eyes flicker beneath their lids, like the tremor of a moth within your cupped hands. Nikki stares. I know what she's thinking, although she'd never admit to it. None of us would.
She's thinking: Let that boy be sicker than mine.
She sees me watching her and colours, dropping her gaze to the floor. "What are you knitting?" she says. A pair of needles pokes from a ball of sunny yellow yarn in the bag by my feet.
"A blanket. For Dylan's room." I hold up a completed square. "It was this or a scarf. I can only do straight lines." There must be thirty or so squares in my bag, in different shades of yellow, waiting to be stitched together once I have enough to cover a bed. There are a lot of hours to fill when you're a PICU parent. I brought books in from home at first, only to read the same page a dozen times, and still have no idea what was happening.
"What year's Liam in?" I never ask why kids are in hospital. You pick things up, and often the parents will tell you, but I'd never ask. I ask about school instead, or what team they support. I ask about who they were before they got sick.
"Year one. He's the youngest in his class." Nikki's bottom lip trembles. There's a blue school sweater stuffed into a carrier bag at her feet. Liam's wearing a hospital gown they'll have put on when he was admitted.
"You can bring in pyjamas. They let you bring clothes in, but make sure you label them, because they tend to go walkabout."
Cheryl gives a wry smile.
"You've got enough on your plate without chasing after a lost T-shirt, isn't that right?" I raise my voice to include Aaron and Yin, the other two nurses on duty, in the conversation.
"We're busy enough, certainly." Yin smiles at Nikki. "Pip's right, though, please do bring in clothes from home, and perhaps a favourite toy? Something washable is ideal, because of infection, but if there's a teddy he particularly loves, of course that's fine."
"I'll bring Boo." Nikki turns to Liam. "I'll bring Boo, shall I? You'd like that, wouldn't you?" Her voice is high and unnatural. It takes practice, speaking to a sedated child. It's not like they're sleeping, not like when you creep into their room on your way to bed, to whisper I love you in their ear. When you stand for a moment, looking down at the mess of hair poking out from beneath the duvet, and tell them Good night, sleep tight, don't let the bedbugs bite. There's no soft sigh as they hear your voice in their sleep; no echo as they half-wake and mumble a reply.
An alarm sounds, a light flashing next to Darcy's cot. Yin crosses the room, reattaches the oximeter to the baby's foot, and the alarm stops, Darcy's oxygen levels reading normal again. I glance at Nikki and see the panic in her eyes. "Darcy's a wriggler," I explain. It's a while before you stop jumping at every buzzer, every alarm. "Her parents are normally here in the evenings, but it's their wedding anniversary today. They've gone to see a musical."
"Ooh, what are they seeing?" Yin has seen West Side Story eleven times. Pinned to the lanyard around her neck are badges from Phantom, Les Mis, Matilda . . .
"Wicked, I think."
"Oh, that's brilliant! I saw it with Imogen Sinclair as Glinda. They'll love it."
Eight-month-old Darcy has meningitis. Had meningitis: another reason why her parents are having a rare evening away from PICU. They're finally through the worst.
"My husband's away, too," I tell Nikki. "He travels a lot, with work." I turn to Dylan. "Daddy's missing your big day, isn't he?"
"Better than a birthday." I touch the wooden arm of my chair, an instinctive gesture I must do a hundred times a day. I think of all the parents who have sat in this chair before me; of the surreptitious strokes from superstitious fingers. "Dylan's coming off the ventilator tomorrow." I look at Cheryl. "We've tried a few times, haven't we, but this little monkey . . . Fingers crossed, eh?"
"Fingers crossed," Cheryl says.
"Is that a big step forward?" Nikki asks.
I grin. "The biggest." I stand up. "Right, my darling, I'll be off." It feels odd, at first, talking like this, with other families all around you. You're self-conscious. Like making phone calls in an open-plan office, or when you go to the gym for the first time and you think everyone's looking at you. They're not, of course, they're too busy thinking about their own phone call, their own workout, their own sick child.
So, you start talking, and three months later you're like me-unable to stop.
"Nanny's coming to see you at the weekend-that'll be nice, won't it? She's missed you terribly, but she didn't want to come anywhere near you, not with that horrible cold she had. Poor Nanny."
It's become a habit now, this prattling on. I'll catch myself talking out loud in the car, at the shops, at home; filling the space where See the tractor? and Time for bed and Look with your eyes, Dylan, not your hands should be. They tell you it's good to talk to the kids. That they find it reassuring to hear Mum and Dad's voices. I think it's us who find it reassuring. It's a reminder of who we were before we were PICU parents.
I drop the side of Dylan's cot, so I can lean over him, my forearms resting either side of him, and our noses touching. "Eskimo kiss," I say softly. He never let us forget that final good-night kiss, no matter how many cuddles had been given, how many raspberries blown.
"Keemo!" he'd insist, and I'd drop the cot side once more, and lean for a final good night, and he'd press his nose against mine and wrap his fingers around my hair.
"Love you, baby boy," I tell him now. I close my eyes, imagining warm breath on my face, sweet from bedtime milk. Tomorrow, I think. Tomorrow they'll take out the tube, and this time it won't go back in. I kiss his forehead and raise the cot side, making sure it clicks safely into place so he can't fall out. "Night, Cheryl. Bye, Aaron, Yin. See you tomorrow?"
"Off for three days," Yin says, holding up both hands in a hallelujah.
"Oh, so you are-you're going to visit your sister, aren't you? Have a lovely time." I look at Nikki Slater, who has pulled her chair a little closer to her son, so she can rest her head beside his. "Get some rest if you can," I say gently. "It's a long road we're all on."
Most Helpful Customer Reviews
a beautiful, emotionally charged story of how the love of a child not only brings families together, it can tear them apart. Clare Mackintosh has written a story that you will think and talk about long after you've finished reading. The characters are so will defined you'll feel their heartbreak and cry along with them. The back story flows smoothly leaving an impact that really can't be described, it has to be felt. Lovely, if sad, story that you'll love through your tears.
In this remarkable story, Clare Mackintosh shares the story of Pip and Max, parents of nearly three years old Dylan and seemingly the most solid, stable, connected couple anyone knows even when challenged by a horrific diagnosis for their son. It took three tries for me to become absolutely enthralled with this wonderfully well-wrought, heart wrenching story. It could have veered into sentimental and predictable and issues-driven, but it never did. Always, always, the story is centered on love, on intelligence and doing the best that we can possibly do under high pressure and no easy solutions. The story felt so real, the moments so wrenching and powerful that I could not believe it was entirely fiction -- and when I read the back matter, learned that Ms. Mackintosh knows Pediatric intensive care units intimately. Somehow, she has taken her own experience and distilled it into a powerful story that resonates for the reader, causing us to question who we are, what love means, what choices we might make under the same circumstances. I read the book in one day and am so very glad that I did.
Pippa and Max are the parents of two-year-old, Dylan. He has a brain tumor and is taking chemo. He has also had surgery which left him with some brain damage. Now, the doctors are saying the tumor is growing again. Dylan may have mere weeks to live. Pippa and Max are beside themselves with worry and are searching everywhere for another treatment for their son. The doctors treating Dylan in the UK want to give him just palliative care for the time he has left. However, Max, who is an American citizen, wants to take Dylan to Texas for a special treatment only available there. However, Pippa disagrees and doesn’t want to put him through it. Thus, the dispute goes to court. The citizens of the UK get into it as well and set up a GoFundMe page for Dylan to pay for his trip to Texas. Is it worth what may be more pain and confusion to put Dylan through the overseas trip and the added treatment if they can only gain maybe a few more years of life for him? This terrible decision tears Pippa and Max and their marriage apart. Can they stay together with this awful future facing them? And what will the court’s decision be? I sure readers will have their own opinion here. As an American citizen, I had to laugh when one character said that the medical care in the UK is the best in the world. I lived in France for many years and am very familiar with the type of socialized medicine available there. For instance, it’s pretty sad that hospitals have to wait for a wealthy donor to give them another defibrillator. I feel very blessed to have the outstanding medical care that we have here in the US. But, that’s just my opinion here. There is confusion here because we don’t know for sure when Dylan died. Was it right away in the UK or after he had been taken to the US for extended treatment? Pippa and Max grieved terribly and we read about that ad nauseam. I know that sounds cold, but I feel that the author added many of those super heart wrenching scenes to add more pages to the book. Not necessary. More dignity should have been exercised. I think the reviews and opinions about this book are all over the place and I suggest that readers think hard if they want to read this. Copy provided by NetGalley in exchange for a fair and honest review.
Not quite sure how to rate this/what to say except I found this well-written book SO DEPRESSING that I often wanted to stop reading it and walk away. Very tough to read, but I persevered. Husband and wife Max and Pip disagree over treatment [or not] for their three-year-old son, Dylan, who has a medulloblastoma. "From the author" [at the end of the novel] reveals that Mackintosh and her husband also had a crtically ill child and faced the same decision. So, I'm sure this book was a cathartic experience for her. Structured as before and after with timelines and voices jumping back and forth [disliked]. An emotional story of love, marriage, parenthood, hope--and after. What if? Mostly told from the point of view of Max and Pip, but also their doctor, Leila. With intervening parental drop-ins [Mostly Max's mom]. I'm going to have to read blurbs more carefully before requesting. This one was tough. So I can't write more. I can't necessarily recommend as it was a chore to read it. As I noted, WAY TOO DEPRESSING. Colored everything I might write.
After the End by Clare Mackintosh is an emotional standalone novel. I have read and loved all of Mackintosh’s previous suspense thrillers, and was surprised that this novel was not a suspense, but an emotional tearjerker. After the End is a story that she needed to write, as it was so close to her heart. We meet Pip and Max, a wonderful couple, happily married, but life changes when their son Dylan, becomes very sick with a brain tumor. They both help each other get through the emotional agony of watching their son go through so many operations and medicine to find a way to cure him. As Dylan becomes sicker, with the lead doctor, saying that they need to do the unthinkable, since the tumor has grown and his survival rate has decreased, and all they can hope for a few more years. Dylan is at the point where the damage to his brain is irreparable, with him unable to talk, walk or communicate. This is where the story changes, and Pip and Max become divided. Pip does not want to see her son suffer anymore, as ‘it is not a life’, and she wants to allow him to die peacefully. Max is the opposite; he wants to try another procedure that will bring him to the United States that will prolong his life. What follows is an emotional journey that will tragically divide and separate our couple. A major court case is publicized, with Max using all means to get money to fight, and at the same time Pip will receive bad publicity. Who is right? What would any of us do? This story has a Before and After POV; before the court case and afterwards. The difference here is that in the After, Mackintosh gives us a what if? Just when the court decision is to be announced, we are thrown into what if Pip wins the case, and what if Max wins the case. At first I was confused, then I realized what she was doing, and it was an interesting and different concept. After the End was a heartbreaking storyline that was at times depressing, as we felt for both parents. The decision making, the division and pain, as well as the final results can very well destroy marriages. Pip and Max were a great couple & very well portrayed by Mackintosh. After the End was so well written, that even though it was heart-wrenching, it was an excellent story. My heart goes out to Clare Mackintosh, as she had to have used her own heart break to write this emotional story.
After the End will leave you thinking well after you finish the book about the wonder and fragility in our everyday lives. This is the first book by Clare Mackintosh that I have read, and I could not put it down. At times this book was not easy to read, my feelings were all over the spectrum, I went from feeling joy to deep sorrow, and everything in between. This author has dug deep in her soul to have written such a beautiful heartfelt story. Clare Mackintosh gives us a story about two people, Pip, and Max Adams, who live a life built on love, trust, and mutual respect. Two people devoted to each other and their toddler, Dylan. They share a life where they are in sync with each other, and then tragedy strikes. Their son is diagnosed with a terminal illness. This illness is monumental, crushing, and it becomes a force all its own, turning their world upside down. Then, they are faced with making an impossible decision; do you let your child pass away with supportive care or do you do everything medically available, which will only delay the inevitable and possibly sacrifice the quality of their life? After the End addresses this very controversial, complicated issue with love and grace. Ms. Mackintosh cleverly writes this book in two parts, "Before" and "After," and the "Before" and "After" can be looked at in different ways. For me, it was not just about before the trial and after the trial, but moreover, it was about before the loss and after a loss how people cope when confronted with the same situation. The "Before" part leads us through the heartbreak of finding out that Dylan has a brain tumor and is subsequently losing the fight against this horrible disease. The doctors have nothing more to offer Dylan but supportive care. However, Max doesn't agree with this, and he finds an alternative treatment. A decision must be made on the future of Dylan's treatment, and a lawsuit ensues between Pip and Max. The second part of this book describes what happens "After" the court hands down their ruling. The twist that Ms. Mackintosh throws at us is the two different scenarios that come from the two different outcomes of the trial, from Pip's point of view and alternating with Max's point of view. Each viewpoint is giving a different perspective and where it leads their life. I enjoyed reading the two different views; each one was equally as heartbreaking: two different roads, two separate decisions, two different outcomes. This book shows us that life is full of choices, but how do you know what the correct choice is. Sometimes you never know. When you finish this book, please read, "from the author." I found this book at times challenging to read and was unsure of how to processes it. However, what helped me understand where this book was coming from was the "from the author" section. One thing I have always said about parenting is that; parenting is the hardest job you will ever love with your whole heart. This book, for me, was about hope and no matter what life hands us, it is always worth living it the best possible way. I highly recommend this book. ***I kindly received this galley by way of NetGalley/publisher/author. I was not contacted, asked, or required to leave a review. I received no compensation, financial or otherwise. I have voluntarily read this book, and this review is my honest opinion .***