I was on fours of the hospital shower, puking up blood, drained yet smiling between coughs, thinking about the events of the last 48 hours.
I should start with saying that she’s not exactly my wife, but we were engaged, and she’s nine, but she did ask me to marry her, and her parents are good friends of mine so we laughed about it. When I left that night, I hugged them goodbye, I called the wife “Mom”, she laughed and gave me a “fuck you.” That’s no way to talk to your future son-in-law.
My kids, all 12 of them, it was 10 at the time, are what the medical establishment would call very sick kids, not expected to live through their teens.
Zoe, my wifey, the heart and soul of the bunch, shouldn’t have survived the night, but she didn’t know that. Her parents had refused giving her the last rights as they didn’t want that energy in the room.
We took turns holding vigil with Zoe, someone always touching her, with no break for two full days. Someone would grab her hand or hold her foot or grip her ankle or her wrist or whatever, we wanted her to know that we were there.
When one of my kids is sick, I won’t leave, I won’t sleep, I won’t eat, nothing can coax me away from them. I know they can feel when someone is there and even though I have the same affliction and I’m six months past my “expiration date,” I give them every ounce of energy I have. My death clock is in full view in the ward. Initially, it was countdown clock and only seen by the doctors. Rather than ‘a race for a cure’ and have the days tick away like the clock on a Hollywood bomb, I thought we’d flip it.
My expiration date, as the doctor’s called it, is now my new birth date, and it’s on display for all to see, and it counts up rather than down. By the end of the second day, Zoe would have a new birthday as well.
Zoe‘s mom stayed the first night, and her dad, Tony, the second. On the evening of the second day, I was beyond delirious, I hadn’t slept in two days, I hadn’t eaten anything, my pee was bright orange, and while holding Zoe’s free hand, I was in and out of consciousness muttering “not tonight”.
Her father overheard me and asked me what that was about. I sprung to half-consciousness, and commented that I was having an argument with death, death wanted her, and I would not allow it, not tonight.
Somewhere around 8 pm, there was a knock at the door of her private room. I opened it a crack as I didn’t want anyone to see Zoe like this. It was Connie, one of the moms of the other kids.
Me: What’s up?
Connie: How is Zoe?
Me: My wifey is doing great.
Connie: I heard about the engagement, so exciting! How is that going?
Me: It’s going really well, she asked me, and I don’t have a ring yet, but she says it’s coming.
Connie: I think you might have a bit of competition.
Me: Does he have a jeep? Does he even drive? Come on now!
Connie: He doesn’t, but he does have a gift for her, and he wants to see her.
Me: It’s kind of rough in here, which is why we keep the door closed
Connie: Can I see her?
I opened the door, revealing a very pale and very prone and very frail Zoe with tubes and wires coming out of her like she was one of those test robots. Her teeny hand held the duck I had given her. I gave Zoe the duck a few weeks earlier, and she would squeeze it twice making it squeak, and then she’d say, “quack, quack” and giggle. A nurse tried to perform a duck-ectomy, Zoe's grip reflexively tightened around it.
Me: He shouldn’t see her like this.
Connie: It’s Zoe. You know how they are together.
Me: But…
Connie: You tell him no. I tried. I just...can't.
She moved aside to reveal Conor. I stepped outside the room and closed the door behind me. Conor and Zoe are inseparable, always holding hands, always laughing, always touching each other’s faces, they’re going to get married someday.
Conor stepped forward with his cupped hands. In them, was the duck that I had given him. He was presenting to me as it was gift for royalty.
Me: Conor, that’s your duck, I gave that to you. It’s yours.
Conor: But Zoe needs it.
There was a lot in those four words. The unspoken part was ‘Zoe needs it more than I do’.
At 2 am, Zoe was more stable and we were able to exhale. The doctors came in and said, “We think she’s gonna make it”.
And when I say ‘doctors,’ there were three doctors, two more than required in our ward, and nurses, we had nurses for days, most of them not on shift. When one of the kids is at risk, everyone shows up, the whole hospital, there is no time off, visiting hours don’t exist, and there is always someone making food in the cafeteria even if it had officially closed hours ago.
And Martha, a 75-year-old retired nurse and volunteer, would not let go of Zoe’s hand. Her husband of 50 years knew his wife. So he would bring her food, and he showed up with a box of her candles which one of the nurses refused to let them set up; but the rules don’t apply to us, whatever we need, we get.
We left Zoe in good hands, a nurse and Martha, sitting on opposing sides, each one holding her little hand between their palms, Martha squeezed so tight that the duck quacked. The hallway was bare, with odd shadows, like those in every ghost story. Tony and I went to the cafeteria, as neither of us had eaten since this began.
We talked about life, and about our plan to help all of these kids make it through. As Norman cousins famously said, "Drugs are not always necessary. Belief in recovery always is."
We figured the best way to give these kids belief that they would survive, is to help them create a compelling future. So we taught them how to imagine their lives as they will unfold, marriage, kids, cars, jobs, hopes and dreams. And they lived in the next 50 years of their lives and their heads, and it’s enough to get them through the painful treatments, working with bodies which don’t respond.
We spent about 40 minutes out of the room, enough time to eat, to reset, to recharge, knowing that Zoe was quite literally in good hands.
When we got back to the ward, there were 40 staff from the hospital gathered outside of Zoe’s room, there was a lot of chatter, and nervous energy, and we held our breath. There’s only one reason they would all be here.
Tony forced his way through everybody and burst through the door in her room. I couldn’t see Zoe, but I could see him, he dropped to his knees, hands covering his face, he started wailing. And nothing felt right.
Like Schrodinger’s cat, I didn’t want to peer into the room because for me, Zoe was still alive, until I turned that corner. I wanted to have the two realities where Zoe was both alive and dead, because with one of those, she was still with us.
Then I saw Tony thrust his hands up towards the ceiling, and he kicked his head back, and he mouthed “thank you.”
I pushed past everybody and into the room, and there were three hospital beds pushed up against Zoe’s.
All of the kids from the ward were there, every single one of them, they were all fast asleep, sprawled out on beds, a twisted knot of bodies, and they were holding Zoe, her arm, her leg, her ankles and her wrists, she was covered with little hands.
That’s not the only thing that was unexpected, the thing that was were 9 ducks piled on Zoe. I gave each of my kids a duck, I actually presented them in front of the group, matched to their individual personalities. And they would use the ducks to communicate. A squeak of one duck would culminate in 9 ducks quacking back in response. A way of communicating, for connecting, and for showing support.
We found out later, then after we left, the kids just knew, and showed up one by one at Zoe’s room, presenting the duck I had given them, for her comfort.
The nurses had tried to coax them to leave, but that wasn’t happening, they all said, “I need to give this to Zoe.”
As far as we can tell, the kids did not plan this, they just all knew that Zoe needed them. So the staff helped arrange the beds and lifted the kids into them.
And the medical community would call these very very very sick kids, they don’t have the energy to be out of beds, some of them can’t walk, they don’t have enough for themsleves, but they had enough to give to Zoe, who needed it more than they did.
I dropped to my knees next to Tony, he kissed me on the cheek, like sometimes men do, and then he hugged me and balled into my shoulder.
Zoe would later report that her arms and legs hurt, and not just her arms and legs, but her joints, which is understandable for a kid who had almost died. But it was more than just the condition of her body, she eerily told us that the ceiling lit up and was really bright, and she said that “the black sheets” were trying to get her, and each time they tried to lifted her, she felt her friends pulling her down, preventing her from floating to the ceiling like a balloon.
We’ve all been that kid who let a ballon slip through our fingers, staring, helpless. I’ll always remember walking in that room, and seeing the unconscious Zoe squeezing her duck to make it quack, and I would swear I saw her mouthing the words, ‘not tonight’.
