Alice in Wonderland and Dreaming about Stanley

There is a scene in Disney’s Alice in Wonderland where Alice tumbles down the rabbit hole. At first she’s scared. Then, realizing the rabbit hole plunges down and down into near infinity, she calms, floating past lamps and furniture and funhouse mirrors, exclaiming, “After this I shall think nothing of falling down stairs.”

When she finally lands, Alice discovers a door, which she opens, only to find herself confronted with another, smaller door. Behind that door she finds yet another, even smaller door, behind which is, yes, another, smaller door. And so on.

This is the closest analogy I can find for having a chronically ill child. So often people discuss sickness as a battle, a fight. It’s not. It’s a labyrinth governed by laws that are subject to change at any moment.

A week ago, Stanley was on a breathing tube, heavily sedated, countless wires snaking from his little body. Today, he’s breathing on his own, alert, playing and smiling and babbling. That’s how quickly things can change.

We’re finally out of the pediatric intensive care unit (PICU), in a section of the hospital that everyone calls “the floor.” The floor is relatively peaceful. Instead of a wall of machines, Stanley just has his feeding tube and heart monitor. Instead of a dedicated nurse and army of specialists, Stanley shares one nurse with five or six other children and sees his doctors once a day. Instead of constant beeps and alarms ringing from every direction, there is only the casual, reassuring laughter of physician’s assistants or the murmur of other patients’ televisions.

Here, sleep is possible. Not the shallow, twitchy unconsciousness of the PICU, but real, immersive sleep. It’s here, on the floor, that I’ve finally had my first dream about Stanley. You’d think—given the sheer anxiety, terror and overwhelming focus on Stanley’s condition in recent months—that I’d have had countless dreams about my son. But I’ve had none.

The closest I’d come to dreaming about Stanley before Friday night was a fragment, a blip: a glimpse of a boy, maybe six or seven years old, with long black straight hair, climbing onto a couch. That’s it. Maybe that was Stanley. Maybe it wasn’t. But that was the closest I’d come.

Then, on Friday night, Stanley finally appeared in a dream. Most of it is lost to me now, but I do recall sitting in a golf cart with Amber and, between us, on the seat, was a bassinet. And in the bassinet was Stanley. I remember that Amber was driving the cart along a winding road and that we knew we needed to protect Stanley, but from what I can’t recollect.

I woke from that dream in the hospital room, which was lit by a single light above the sink. I heard a noise and got up and found Stanley in his crib, awake, alert, smiling as if the last 36 days had never happened.

Soon, we will be able to leave the hospital and go home, together, armed with nebulizers and syringes and a list of medications two pages long—pills and liquids for battling organ rejection, treating inflammation, preventing gallbladder stones and blood clots and ulcers and angina—an intense regimen that will hopefully keep him out of the hospital for a very long time.

But leaving the hospital is not the end of the story. Liver transplant patients have to take at least one medication for the rest of their lives and run the risk of developing graft failure, kidney failure, infections, cancer and more. There are regular doctor’s visits, consultations, therapists, unending blood tests. Facing these challenges and risks is a privilege of the survivors, of those who get to go home. I’m more than happy to bear it.

We’re all ready to go home. Soon, our little family will open that last, littlest door behind all the others. We will squeeze ourselves through the tiny portal and find ourselves in another room featuring another tiny door that will lead to the next thing and the next thing and the next. We don’t know where it will lead us but we will find out together.


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