After the End(13)

ET tube removal went v v well. BiPAP mask for now, but looking good so far. Safe trip home tonight. We miss you! x



Almost immediately, my phone buzzes with a reply.


Miss you too. Not long till I’m back xxx



Three kisses.

“One for you,” Max said, all those years ago, in the first note he wrote me after I told him I was pregnant, “one for me, and one for our baby. A family of kisses.”

I feel a prickle of tears and blink them away. I stand up, screwing the rest of my sandwich up in its tinfoil packaging, and putting it in the bin. I flick on the kettle, then walk around the room, stretching my neck from side to side and feeling it crack in complaint or relief, I’m not sure which.

On the coffee table is an A4 book Cheryl gave me when I asked if I could start a suggestions book.

“Not for you guys,” I explained, “but for other parents. New ones. Somewhere to share tips on how to cope.”

“What a brilliant idea. I’ll get you a notebook.”

I thought there’d be a stationery cupboard or something, but when she gave me a spiral-bound book the next day I spotted the price sticker half-peeled off the back. I tried to give her the money, but she wouldn’t hear of it. I open it now, twiddling the pen between my fingers. The last entry is mine.

Domino’s Pizza will deliver! Give them the postcode for the children’s hospital, and meet them at reception. It was one of the porters who told me that, when he found me staring at an empty vending machine, late one Sunday night. Max and I ordered pepperoni, and fell on the greasy slices like they were Michelin-starred.

Above my entry someone has written in careful cursive: If you turn left out of PICU and cross the car park by the nurse’s block there is a bench underneath a huge oak tree. It’s a lovely quiet place to sit and think.

I know that bench, and they’re right—it is a lovely quiet place. I take the lid off the pen, trying to think of a tip I haven’t shared, something that will make a difference to exhausted, anxious parents. Parents who aren’t coping, who don’t know what to do, what to say, where to go.

I put the lid back on the pen.

Blood sings in my ears as a wave of fear and grief washes over me, and I stand and walk to the sink. I think of the swans we take Dylan to feed on the Stratford canals, and I wonder if they ever give up—if all that furious paddling beneath the surface one day just gets too much, if it builds and builds, like it’s building in me, until they can’t be serene anymore, can’t glide across the surface, pretending everything’s OK. And then . . . what?

I feel myself sinking, my knees buckling, and I lean on the draining board, my face distorted in its stainless-steel reflection. I open my mouth in the silent howl of Why me why us why my boy that is never far from the surface and I think of the swans, paddling paddling, seeming so calm, so in control. Why me, why us, why my boy?

Behind me, the door opens. I take a deep breath. Blink hard. Paddle. “Kettle’s on!” I paste a smile on my face. In the draining board a warped reflection smiles back. Paddle, paddle, paddle. Nikki Slater, perhaps, or her husband, or a brand-new parent still wide-eyed with the strangeness of it all, and needing a friendly face, needing reassurance.

And then an arm wraps around my waist, and rough stubble scratches the side of my neck.

“Hi, honey, I’m home.”

I drop the mug I’d picked up, and it clatters into the metal sink. Max. He smells of coffee and travel.

“Surprised?”

I twist round to face him. My heart bursts. “How did you know?”

“Know what?”

I start crying, the weight of everything suddenly too much to bear. “That I needed you right this very second.”

He takes his arm from my waist and puts his hands on either side of my face. Dark shadows ring his eyes. “Because I needed you right this second too.”



* * *





Over the last few months we have learned that hope is one side of a seesaw balanced by despair; too quickly tipped from one to the other. We have learned to be cautious, to ask rather than assume, to take each day—each hour—as it comes.

And so even as the sedation leaves Dylan’s body, we are cautious. Even as Dr. Khalili comes by and says OK, now let’s switch to a nasal cannula, we are cautious. We share a surge of delight as we see our son’s face free from a mask or ET tube for the first time in weeks, then immediately temper each other’s enthusiasm.

“There’s colour in his cheeks—look!”

“He’s not out of the woods yet.”

“So good to see his sats stable.”

“Early days, though.”

We take turns to throw cold water on each other’s sparks of hope, not letting them catch fire. And yet, as twenty-four hours become thirty-six become forty-eight, and Dylan’s extubation is officially declared a success, it is impossible not to hope.

“He’s breathing,” Max says, in a voice little more than a breath itself. He stares at our boy, the nasal cannula now lying on the pillow beside him, just in case. I look at the saturation monitor, see the oxygen levels flirt around 93 percent. A healthy child’s sats range from 96 to 100, but for Dylan, 93 is good. Ninety-three is great.

“He’s breathing,” I say. We look at each other, neither of us wanting to be the first one to say what we’re both thinking. He’s going to be OK.