|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."