Jack, we know how much you like tall buildings. So we wanted to do something special for you... We hope you get well soon and can’t wait to see you again!
Slowly he began to turn the pages. Pasted onto the rainbow-colored paper were pictures of his classmates on top of tall buildings, up on cliffs, looking out to sea. The Telecom Tower, Canary Wharf, the lighthouse at Beachy Head. The children were all holding signs saying “Get Well Soon, Jack.”
“You’re The Best, Jack.”
“We Love You, Jack!”
I had never seen him look like that before. It was as if he had unwrapped the world. He savored each and every picture, every single message on every single page. Then he paused for a moment, lingering on one photo. It was his best friends at school, Martin, Tony and Emil on the top floor of a skyscraper somewhere in London. They were grinning and holding a sign that said: “Jack Coates: Pokémon Collector and Superstar.” Jack’s bottom lip started to quiver and then, for the first time since all of this began, he started to cry.
* * *
On the day of the operation, Jack cheerfully sat upright on the gurney, his surgical gown making him look like a little elf. As we descended into the bowels of the hospital, the bright yellows and reds of the children’s ward turned to sullen greens and browns as we entered the complex of vestibules and waiting rooms where we would eventually leave Jack.
We kissed him and told him we’d see him in a bit, not wanting him to think he was going anywhere for long.
“Bye-bye,” he said, unphased. “Kiss Little Teddy,” he added, holding up his bear, whose arm had been bandaged by a nurse.
* * *
We sat on a bench in a park for hours that day, waiting for Dr. Flanagan’s assistant to call. To think that once, we were so worried about a rogue mole, a tiny lump that appeared on the side of Jack’s neck. To think that once we used to agonize about his milestones, wondering why he hadn’t yet started to walk, why he had no interest in stacking more than three blocks at a time. To think that we were worried about all that, when Dr. Flanagan was now cutting into Jack’s skull with a circular saw. A neat cut, like a cartoon ice hole. Another human being’s hands inside my child’s brain.
That afternoon, we sat in the park and tried to ignore the trudge of time. When you lived in peace, when your concerns were minor and mundane, time was invisible: it flowed, ebbed, like an app quietly running in the background. But now time was impossible to ignore: it was menacing, counting down, the second hand on a giant Orwellian clock.
I didn’t know what to do, so out of habit I opened Hope’s Place on my phone and saw that I had a number of private messages.
Subject: Best Wishes
Sent: Mon Jul 7, 2014 1:58 pm
From: Camilla
Recipient: Rob
Hi Rob, I see from your posting last week that today is Jack’s operation. I just wanted to wish you well and let you know that I’m thinking of you all. I’m a long-time veteran of Hope’s Place. My daughter was diagnosed with PXA in 2009. She has been healthy and happy ever since and lives a normal life. I know it might be hard to hear now, but you have so much to be hopeful for. Take care.
“Look,” I said, handing Anna my phone. “From someone on Hope’s Place.” Without her glasses, Anna squinted as she read. “How lovely,” she said. “Do you know that person?”
“No, not at all. I asked something on the forum this week about recovery time, and I said Jack’s operation was this week. There’s more, look.” I opened another one.
Subject: Good luck!!
Sent: Mon Jul 7, 2014 5:16 pm
From: TeamAwesome
Recipient: Rob
I have to be quick because I am just off out the door but wanted to wish you the best of luck for today. We have a little tradition around here on Hope’s Place of sending good wishes on op day...so just to say that I’m thinking and praying for you all. I know just what a lonely, heartbreaking, nerve-racking time this is. My son was diagnosed eight years ago and is now a happy healthy teen, who manages to find a million ways to drive me mad! I am telling you this as I remember just how much I needed to hear stories of hope, not from doctors but from real people, people who had gone through the same. So that’s my story of hope. Do post to let us know how it went (if you feel like it). All your friends on Hope’s Place are cheering you on.
“Goodness, people are so kind,” Anna said, scrolling through the message again.
“Are you okay?” I said, squeezing her shoulder, pulling her closer to me on the bench.
“No, not really. I’m just so, so...” Her words trailed off, and her eyes followed an old couple strolling with a bag of bread crumbs for the birds.
“Me too,” I said, and took a deep breath, letting some air into my lungs. I went back to my phone and started to read the rest of the messages, stories of hope from strangers on the internet.
* * *
Jack had woken up, and we went to see him in intensive care. One half of his head was covered with a dressing and net. Occasionally his eyes would flicker open but then quickly shut again, and we sat on either side of him, each holding a hand.
“I’m sorry,” a nurse said, when we asked her if the operation had gone well. “I can’t tell you that, but the doctor will let you know more. She’s in the waiting room, the one at the end.”
I knew something was wrong as soon as I walked into the
