By Anna Belle Kaufman
“Zackrabbit,” I say to the five year old seated behind me in his car seat, “I have another stop to make. But I can see you’re tired. If you don’t feel up to it, just tell me and we’ll go home now.” I glance back at my son in the rearview mirror.
My boy is no longer an eager little bunny. His once glossy bangs are now a limp curtain across his brow, dancing eyes are dulled by Dilauded (a powerful narcotic), the mischievous grin all but extinguished by pain. His neck and right cheek are bandaged, swollen and purple with infection. Zack, cradling his constant companion – a small stuffed panda bear named Bumby – thinks for a minute, rubbing Bumby’s nose, then says, “I am very powerful Mama, I can hold in my tired.”
Heading towards our small home in the hills above Hollywood where the sun burns bright through smog, we drive through streets of MGM Technicolor: garish billboards, magenta bougainvillea, people bright as tropical birds in their shiny turquoise and pink spandex eighties aerobics wear. I, however, am living in different movie: one filled with the chiaroscuro nightmare and impending doom of Film Noir. The color leached from my world a year and half ago, on the day – right before Zack’s fourth birthday – that my son was diagnosed with AIDS. In 1987 there are no treatments of any kind. Nothing.
I have grasped at whatever I could find: special diets, supplements, energy healing – anything that might help keep him alive until a medicine was created. But when Zack became too ill to attend kindergarten in the fall, I knew it was hopeless. Now, I only hope that he’ll be able to enjoy one last holiday season and not suffer.
The sense of doom heightens for me as each day winds toward dinner hour. The ever-present lump in my gut tightens with the sound of the liquor cabinet opening. My husband Gerry, working less and drinking more since Zack was born, is, at best, checked out after four or five, and can be a mean drunk (although never to Zack, who he adores). I never know if he will start an exhausting nonsensical argument or angry tirade or how ugly it will be. I must negotiate a minefield, caring for Zack and trying to avoid explosions which, though not directed at our son, affect him. Gerry denies illness and death as much as he can. He says “I don’t do grief.” Now, even as help is obviously never going to come to save our boy, he forbids me, fiercely, to ever mention the D word with Zack.
So I must help my son on my own, covertly. But how? Although I have prepared Zack for numerous surgeries, helped him work through medical traumas with play and stuffed animals and blood made from paint, I have no experience or familiarity with death. I was not around my grandparents when they were dying, nor have I any religious education or community to draw upon or turn to. I don’t even know what I believe about death, if I think anything continues on. My pre-Zack career as a designer of costumes and sets did not prepare me for this; there is no script to study. I know the power of the right story, but what story is developmentally appropriate for a kindergartner? There are no children’s stories that I can find about dying that are not of the rather vague seasons variety with illustrations of trees losing their leaves – a metaphor that is useless to my suffering boy. Our Pediatricians never mention the D word and no one at the hospital is of any help. Internet groups, chat rooms and Google have yet to be invented. Bookstore shelves in the 1980s are not stocked with volumes on dying and grief. Except for one.
I manage to find the number for Elizabeth Kubler-Ross’s office in Virginia and leave a message. Surprisingly, she calls me back almost immediately and we talk for quite a while. She gives me her home phone number, saying “Please, call me anytime, any hour of the day and night that you need to. I just ask one thing: don’t give my number out to anyone else.” Then she adds “I’ve written a story for another little boy. It’s just what you need, I’ll send it right away.” Zack’s anxiety level, as well as mine, has increased as he feels worse and I am relieved when the package arrives, a story bound like a pamphlet, illustrated by Elizabeth herself.
When Gerry is out of the house, I read “Letter to Dougy” to Zack. In it, Elizabeth explains that when one doesn’t need one’s body any longer, your spirit leaves it to go to God, like a caterpillar leaving its cocoon to become a butterfly and fly away. We study her pictures of butterflies drawn in brightly colored markers. When we are through, Zack looks up at me with his old twinkle, smiling through the swollen cheek, in spite of the pain.
“Momma, when I die, we will go to Grandma’s and you will take the station wagon and I will fly and I will get there first!”
Glad that we had some private time to have the death discussion, I am, however, unprepared for it to come up around Gerry a couple of days later. I am seated in the back seat of the car next to Zack while my husband drives along Santa Monica Boulevard. Zack turns to me and asks, in his piercing high chipmunk voice, “Momma, when I go to God, will Bumby come with me?”
I feel that too-rapidly-descending-elevator feeling sink in my middle: there will be hell to pay tonight if Gerry finds out we’ve talked about death, or God, in whom he does not believe.
Speaking quickly I answer, “Of course.”
Zack gives me a look and says “But Mom…. he’s a stuffed animal!”
Busted. By a five year old. The one time in his life I’ve given him the brush-off. Luckily, Gerry seems to have not heard us and, relieved, I quietly reply,
“I believe that if you want him there with you, he will be.”
I wonder if Zack understood the message underneath the brush-off, because he never raises the topic again in his dad’s proximity; his dying becomes a new intimacy between us, after those of pregnancy and breastfeeding. The following week, while visiting Zack’s grandparents, my mother and I are in the bedroom discussing her health problems and her grandson’s worsening condition in lowered voices while Grandpa and Zack talk in the dining room. I suddenly become aware of a palpable silence beyond the closed door and open it to find Zack standing there, anxiously shifting from foot to foot, rubbing Bumby’s threadbare nose. His Grandpa, absorbed in snacking and reading the paper, has neglected his frightened charge who now wants to go home, tears running down his cheeks.
“Zack, Did you think Grandma and I were whispering about your illness?” I ask.
“You don’t have to to wonder, or hear accidentally. I’ll tell you everything you want to know and I will always tell you the truth.”
We talk about his illness. He already knows that his blood was poisoned by a transfusion when he was a baby but I have been careful never to use the word AIDS. People are terrified of AIDS and AIDS patients, fear they can catch it from mosquitos, shared potato chips, a hug or a kiss. Even some nurses at our hospital won’t go near children they once cared for when those same kids were diagnosed with HIV. I don’t want anyone to shrink from a child who – in spite of lengthy hospitalizations and traumas in his first two years – became an exuberant extrovert, a charmer who used to love to work a room. A boy who, just a year ago, had bolted in the mall, zooming up to a complete stranger to introduce Bumby. I watched while the woman in the elegant pantsuit appeared alarmed, then smiled, and, by the time I reached them across the food court, was ready to sign him for her talent agency. Being small for his age was an asset, she said, handing me her card. One month later, I found out why he’d stopped growing and told her we’d have to pass on her offer to to make some college money. (Zack, acutely aware that he was shorter than other children his age, explained it to me — and to himself. He would grow on the day of his birthday, when he turned five.)
Now, at this moment at Grandma’s, sitting on the bed clutching Bumby, Zack asks me “And can I die?”
Other parents, who might also pause if this question is raised, are able to answer “Not until you are very old, not for a long long time.” But I have promised to tell the truth.
“Yes Zack. Your body can become very sick and tired and painful and your spirit might want to leave it, like the butterflies leaving their cocoons. Or like taking off and dropping a heavy coat you don’t need on a hot day at the beach.”
He nods, he loves the beach. Grandma then joins in, talking about heaven, telling Zack and I that we will all be together there someday and that when she gets there she’s going to find a great big beautiful piano and practice all day. And if she gets there first, she will be waiting for him. Zack, relieved and cheerful, says “Okay, Mom, let’s go to Century City now.” And I push him in his stroller to the outdoor mall to see the holiday decorations.
But as fever and pain intensify, his fears about dying return. After coughing badly he asks “Do I go now Mom?” Then again, the next morning he asks me “Am I dying now, Mom?” He doesn’t want me to leave him, even for a few minutes, and I realize that he thinks death is imminent and he is afraid that it will happen to him if or when I leave the room, or leave him alone. We have another talk.
“Zackrabbit, Death won’t sneak up on you and surprise you. You will know if it is coming. You’ll decide when you’re ready and you will tell me.”
I believe this to be true. And it is. The first time is just a hint: I am rummaging in the hall closet when Zack creeps up behind me
“Momma, what is it like to be a let-go balloon?” Because Zack pronounces L as W, it takes me minute to understand what he has said: a balloon that has gotten away from it’s owner. I see a forlorn pink balloon, lifting out of the extended hand that held it and is still reaching for it, getting smaller and smaller against a threatening gray sky. I don’t share my image, but ask “What do you think, Pumpkin?”
Zack says that he thinks it would feel good to float free and fly up in the sky. He is telling me obliquely that his body, tethered to earth by pain, would welcome release. I, however, am the hand that holds the balloon. I don’t want to let go. I know it is only a matter of time before my balloon escapes from me, disappearing into nothingness while I remain helplessly earthbound.
He next tells me — although certainly I see him failing — through a story. Not one that he makes up, but one he chooses: Watership Down. At the foot of his bunk bed stands a green oxygen tank I have decorated with a drawing of a purple panda, and a small television so that he can be distracted from pain. From all the videos, Zack only wants “Watership Down,” ignoring even former favorites like Dumbo, that has a train in it. We rewind and repeat to watch Hazel, the rabbit heroine, die. It reminds us of the story of the butterfly. We study the part where Hazel’s body, hurt and sick, remains on the ground and the Black Rabbit – the angel of death- flying, comes for her. Hazel’s spirit self – a more transparent version – flies gently up out of her body into the sky and leaves with the Black Rabbit.
Our last story is the one that allows each of us to say goodbye.
It is December, 1987, evening. In Zack’s room the only light comes from the colored globes of the balloon man lamp on the night stand. Zack and I have watched Watership Down a few times in the past two days. It is clear to me that Zack is so terribly ill that he should have left by now. At his last visit to Cedars-Sinai a few days earlier, the pulmonologist listened to his chest and couldn’t hide the shock on her face. Perhaps he is hanging on for my sake; I worry that he thinks it is not okay to leave me, or leave without me. And, of course, it is not. But I can not bear for him to suffer more than I can not bear to lose him. He sits on the potty next to his bed, belly distended and aching, eyelids swollen with edema, eyes unfocused black dots beneath lank bangs. We are alone.
So I tell him a story. It is the story of his entire life, in third person – I never say it is him. I tell him about a little boy who was born early, who spent lots of time in the hospital and who had many surgeries and was very brave. A boy who had a tube in his tummy and then a silver trach in his throat when he was small. A boy who went to St. Thomas School and learned to ride a big trike. A boy who has a panda bear that he loves and carries everywhere, and who makes waffles with his Grandma and silver jewelry with his Mom and computer drawings with his Dad, and who loves trains more than anything. A boy who loves his Momma very very much and whose mother loves him more than anything else in the whole wide world. His mother understands that it is time for him to leave his body behind because it is very sick and it hurts. It is okay with her. She will be all right.
Only the end is fiction: the biggest lie I have ever told or will ever tell in my entire life.
“Zack, do you understand the story?” He doesn’t speak, seems only partly conscious, the whites of his eyes rolling up, but he nods yes, and I know he comprehends exactly what I am trying to tell him.
The next night, at 3:00 am, the Black Rabbit flies to our house; it comes for him while I hold him in my arms, singing his favorite lullaby.
Hours later, after the death certificate has been signed and his body and Bumby taken away together, I sit on Zack’s empty bed in the dusk of the early December evening. Outside, just past the window, a monarch butterfly flits around and around and around, making figure eights below the porch eaves. It flies like that for a long while, thirty minutes or more, as if it is trying to get my attention. Then it settles on the eave closest to the bed, folds its wings, and remains there while I finally fall asleep. It is gone the next morning.
On Christmas morning, a week later, my husband and I distribute Zack’s still-wrapped gifts to children on the pediatric ward at Cedars. I return home to find, among the condolence cards, a gift package with my name on it. Unwrapping a small but heavy box, I lift out a dense object that lays smooth and cold against my palm: a black glass figurine of a rabbit.
On the phone, the woman who sent the gift explains that she sent different glass animals to everyone on her list. Not knowing why, she sensed the black rabbit was right for me. She has neither read nor seen Watership Down although she also has a young son, and is amazed to hear the story.
When I told the last story to Zack, and in the even darker time after, it was unimaginable that I’d ever be okay. But eventually I learned that what I thought was a lie was simply truth that took a very long time to reveal itself.
Now, so many years later, on my desk next to a photo of a little boy with an impish smile, a shiny black rabbit crouches on its haunches, nose in the air, gazing at me. It silently prompts me to tell the tale I’ve never told before. You know the one. About a mother, some butterflies, and a rabbit, and the stories that came when they were needed.
Author’s Note: Six weeks after Zack died, I met Elizabeth Kubler-Ross at one of her retreats. She gave me a scarf that she had knit, made from the wool of her sheep, in pink – Zack’s favorite color. Her teaching story for the group was about a black rabbit.
Anna Belle Kaufman is a retired art psychotherapist who lives in the country in Northern California with her second husband, dog, and two pet goats. Her essays and poetry have appeared in The Sun, Calyx, the Utne Reader and the Networker.