This article was one of 40 finalists out of more than 500 submissions to the literary journal Creative Non-Fiction’s call for submissions on the topic of End of Life.
Bev wonders aloud. “Does Andrew know as much, in concrete terms, about his situation as his friends now know?”
I have to consciously restart my breathing.
“He never got briefed after the last MRI,” she says, “and the decision to stop treatments. He was in another room, remember?”
Yes, my 16-year-old son, channel surfing in the teen rec center in Seattle’s Children’s Hospital, while we discuss his end-of-life care in a conference room.
Bev, the hospice worker assigned to my family when Andrew’s brain tumor became inoperable, reminds me that we had opted to let Dr. Geyer, the head of his medical team, tell Andrew. “They never connected. Dr. Geyer got called away.”
Bev and I have just briefed Andrew’s homeroom, at her suggestion, preparing them to visit Andrew. They now know more than he does, so somebody has to tell him.
I already know who that will be, but I don’t like the idea. I’m scheduled to pick him up this afternoon from his mother’s house and have him for the weekend. The class will visit Sunday. I know that if I ask Dr. Geyer to do it, he’ll just tell me it should come from a parent. I know Andrew’s mother can’t do it.
It’s up to me.
I decide to tell him that night, to leave as much time as possible to think things over before his friends visit. I also know I can’t tell him what he doesn’t want to know. I have to get his permission.
It’s just the two of us at my rough-hewn Mexican dining table that night. He’s rolled up in his wheelchair. I sit next to him. As I help him eat, he’s lucid, wide awake, conversation flows. Inside, I feel hollow but calm.
Now.
“Andrew. Has anyone told you the results of your last MRI?”
“No.” He locks his eyes on mine and won’t let go.
“Do you want to know the results?”
“Yes.”
“It’s not good.” I take his hand. “There’s new tumor growth, in other parts of your brain.” His eyes tell me to go on. “The doctors can’t get at it with surgery, and the chemo appears to have stopped working.” I take a long breath. “I know, it seemed to help for a little while, but not anymore.”
“So I’m fucked.” Dry, straight to the point, no sign of emotion, just a hint of anger, his eyes still locked onto mine.
I look down, and shake my head. “Yeah, I’m afraid so, Andrew.” I meet his eyes again, search for something to say, something that will make it easier for him. Something that will break this increasingly awful silence. I resort to more facts.
“The doctors tell us there’s nothing more they can do. They told us that a week ago. I decided I didn’t like what they said so I phoned Dr. Geyer to ask him again if there was anything else we might try.” Andrew’s grip tightens on my hand. “He said there isn’t. We’re out of options. He said even if there was something, we probably couldn’t get you into the trial because they have certain requirements that you don’t meet anymore.”
“So I’m fucked.”
“Yeah.” I shake my head again. “Do you have any questions, or anything you want to say?”
“No.”
“Okay.” More silence. I remember something Bev had said was often helpful in this situation. “You should know that we asked, well, when it happens, how will it happen. He told us. Would you like to know that?”
“You mean, how I’ll die?”
“Yes.”
“When will I die?” So matter of fact.
“Nobody knows for sure. Dr. Geyer said it’s very unlikely it would be less than two weeks, and it’s very unlikely it would be more than six months.”
He rests, releases my hand to scratch an itch, then takes my hand again. “Okay, how?”
I feel calm now, a bit surprised about that. “You know the tumor has already affected your mobility. You’ve seen how it’s made it tougher for you to talk. That’s happening because the tumor is putting pressure on the parts of the brain that control those functions. What’ll happen next is you’ll get sleepier and sleepier. Eventually you’ll fall into a deep sleep called a coma. Then sometime after that, the tumor will put pressure on the bottom of the brain, the part that controls breathing. Your breathing will get more erratic, and then one day you’ll just stop breathing.”
“Will it hurt?”
“You won’t feel any pain.”
“How long?”
“I don’t know, Andrew.” After a moment, I ask again, “Do you have any questions? Anything you want to say?”
“No.” His eyes still hold mine.
“Are you scared?”
“Yeah.”
“Of what?”
He gives me that look that he always gives me when he’s about to say “you are such a dork.”
“Of dying.”
“What do you think it’s going to be like?”
“Scary.” The look.
“Do you think you’ll see anything or feel anything as you go through this?”
I hear a hint of wise-guy. “Scared.”
I start to tell him about my beliefs. We talk about ancestors, about various cultural traditions, about friends and family. Some things we’ve never talked about before. Still holding his hand, my other arm wrapped around him over the top of the wheelchair, I tell him I believe my ancestors will be there on the other side, waiting to greet me. To greet him. I tell him what I believe about souls choosing each life for what they will learn and what they will teach.
At bedtime, I say, just as I’ve said nearly 6,000 times, “Good night Andrew. I love you. See you in the morning.”
On Sunday morning, it’s just the two of us for breakfast. I find him looking at me with those beautiful brown eyes of his.
“Andrew, you’re looking to me as if you’re looking, searching for something.”
“Uh-huh,” with that you-are-such-a-dork tone.
“So what is it?”
“The answer.”
“The answer to what?”
“Why?”
“Why what?”
“Why am I going to die before you? This is bullshit. The father is supposed to die before the son.”
Some tears come, and I yield to them.
The class visit goes well. With Bev’s coaching, I’ve learned to bathe Andrew, even to fix his hair the way he likes it. He looks great, and looks both elated and wistful when the visit ends.
It takes a couple more days for the shock to wear off, and Andrew breaks down at his mother’s house, sparking yet another round of telephone rants reflecting the terrible differences in how our respective households have dealt with Andrew’s illness.
On a Wednesday two weeks later, my wife Madelyn and I take Andrew to his favorite Mexican restaurant. He can no longer hold his head up, or feed himself. Between bites of honey-drenched sopapillas, he tries to say something, but I can’t understand him. He tries again and again, and I shake my head in desperation.
As I drive him back to his mother’s in the wheelchair van, I hold his hand. The fuzzy dice he gave me for my birthday a month ago glow red under the rearview mirror. I roll the wheelchair off the ramp and stop. Cradling Andrew’s head in my hands, I kiss him on the forehead. “I love you, Andrew.”
“Love you too.”
“See you Monday.”
Two days later, Bev visits me at home. She had seen Andrew the night before at his mother’s and tells me that, based on the way he looked, spoke and breathed, he’s getting close. She asks me if he’s ready.
“Yes,” I say, “yes, he’s ready.”
In mid-afternoon, Madelyn and her daughter get into a loud argument. Something begins to feel terribly wrong inside me. I have to get out of the house. Now.
My heart pounds, I breathe as if I’d been running. I feel queasy. Stuck in rush hour traffic, my anxiety mounts, way beyond the normal feelings of dealing with freeway hassles. My hands tingle with adrenaline. I pull over and just sit for a while. I feel strangely dangerous. It doesn’t feel safe for me to go anywhere, do anything, see anyone.
I start driving again, with no destination.
Maybe by simple habit, my car takes me to Andrew’s drum studio. I park, think a few minutes about Andrew’s drumming and my futile attempts to learn the guitar. I listen to the rain drumming on my roof. I feel dazed, and remember I’ve left home without a jacket.
Next door is the gun range where I’d taught Andrew how to shoot. Maybe shooting for a while will help. I run in. Standing at the counter in my rain-spattered blue button-down shirt and jeans, wet hair stuck to my forehead, I try to concentrate. My favorite Colt .45 semi-auto isn’t there. I look up at the guy behind the counter, stern, stocky, Asian features, black slicked-back hair, a gun holstered on his hip.
“Got a Beretta model 92?”
“Don’t have one today.”
I feel awkward, with that hole still in my gut.
He folds his arms across his chest and squints at me. “Do you have anyone with you tonight?”
“No.”
“Do you have your own gun?”
“No, I’m here to rent.”
His face doesn’t move. “Then I can’t let you shoot.”
I feel freaked out. Then I start to freak out that he’s freaking out because I look so freaked out. I leave.
A few blocks away, I pull into a supermarket parking lot to take a break, to breathe. A deli offers the prospect of warm food. I’ve just finished an order of Chinese dumplings when my phone rings. It’s Bev.
“Andrew died this afternoon.”
That’s what it was. My body knew. It had felt like something was being ripped out of me. My head spins, I feel nauseous. I listen as I walk to my car, hear her say he had probably died around 4, that his mother had found him about 5, that he was on his way to Children’s, that I should go there.
“It’s 6:30, why did you wait to call me?”
“We had to give them time to say good-bye. Go to Children’s, through Emergency, you can see him there.”
It would take a while before I could fully grasp and appreciate the challenges Bev and her team had faced. This was already a disaster. Without them, it would have been far worse.
I hang up, get in the car, and wail. My face and stomach ache from the sobbing when I’m finally able to dial Madelyn. “Hello?”
“Andrew’s dead!”
“No!” I tell her I’m going to Children’s, to meet me there.
“I don’t want you driving! Where are you?”
“I have to go, now.” I hang up and drive to the hospital.
Dashing in through heavy rain, I’m hailed by a security guard and I stop in my rain-spattered shirt and jeans, wet hair stuck to my forehead, trying to concentrate. A gray man in a light blue shirt with badges on it, he approaches, looking me up and down. In as calm a voice as I can muster, I say,
“My son just died, he’s been brought here for an autopsy, and no one is going to touch him until I see him.”
The guard’s face softens. “Please wait a minute, let me find out for you where he is.”
I walk around in circles in the vestibule.
“Andrew is here,” the guard says, his voice gentler now. “They are getting him ready for you to visit, it’ll just be a few more minutes. The pathology nurse will come get you.”
It stops raining. I go outside to get some air. I walk around in circles in the driveway. Madelyn arrives, we hug and huddle. The guard comes out and invites us to come in. As I pass him, he says, “I’m sorry for your loss.”
“Thank you.”
The nurse leads us through the all too familiar emergency room hallway. We turn left down another hallway and see the all too familiar entrance to surgery. We turn again past a sign that says “staff exit.” Another turn, another hallway, but now there are no more teddy bears on the walls. No kites. No choo-choo trains. No bouncing balls. This hallway leads us to a door that no parent ever wants to see. We stop. The nurse punches a security code into the numeric keypad. The door opens, and there’s Andrew.
All I see at first is him on a gurney, covered in thick white cotton blankets. His face is uncovered, turned to the side. He looks asleep. Then I remember why we’re here, and the grief wells up inside me and erupts in tears and wails. I find myself leaning against a cold, cold wall and turn to look at it. It’s a wall of stainless steel doors, the size of household freezer doors, three or four doors high, three or four doors wide. I look at a sign on one of them. As the words come into focus, I realize they are instructions. They are very matter-of-fact instructions. How to check in bodies.
Bodies!
After an hour of anguish, sobs and hugs, I feel a shift, like a switch getting thrown, and I look up, wondering whether Andrew’s spirit is still in the room, watching us. I look at him, see the shadow on the lower part of his face where the blood has settled, touch his forehead and feel the already cool, cool skin, notice his mouth in a slight smile. One eye is barely open, and if I squat in the right spot, it almost looks like he’s winking at me. As if he’d just pulled a good practical joke on me. It makes me smile.
I remember asking for some private time. I remember being startled by the impression he had taken a breath, or moved a finger. I remember speaking to him. I don’t remember what I said.
Hungry again, I find a vending machine. I get a Butterfingers, Madelyn’s favorite, and two Three Musketeers bars, Andrew’s favorite. One for me, one for him. When I go back in to see him, I slip a bar into his hand, the crackle of the packaging muffled under the blankets.
The pathology nurse brings us a handprint kit. She says families sometimes make plaster casts of their child’s hand, as keepsakes. The kit is, as with just about everything else in a children’s hospital, designed for a small child, not a teenager, so we improvise with large paper plates from the cafeteria. I pick up Andrew’s left hand. The skin is pale, almost translucent. I gently push it down into the plaster, watching the white mud squeeze up between his fingers. I smile, thinking of a little Andrew pushing his hands into mud just to feel it squeeze up between his fingers.
When it’s time to go, I pray that I’ve done enough to prepare him, that he wasn’t scared. I wonder again what he had been trying to tell me at the restaurant. I don’t think I can do this again? I think I’m done? Get me some more salsa? I stand at the door and for a moment feel like I have on each of those nearly 6,000 times I’ve tucked him in and said good night. Then the room comes back into focus, the stainless steel doors, the stainless steel gurney, the stark fluorescent light. Another wave of shock hits my heart as each part of this new reality stabs into my consciousness.
“Good night, Andrew,” I want to say. Then I say it. “I love you.” I just think the see-you-in-the-morning part, close the door, hear the click and chunk of the latch, and wish someone would take me by the hand and lead me outside. Somehow, I find my own way.
It’s hard to sleep that night. I lie awake for hours, feeling a bit guilty for leaving Andrew alone at the hospital. Through all his surgeries, I’d never let him sleep alone at the hospital.
The next morning, I wake up to the realization that he’s gone, and I weep in Madelyn’s arms. Later I drag myself to my journal. It’s the end of October.
Couldn’t sleep, kept lying there thinking about him alone, in those blankets. Woke up to that same vision. It had to be a dream, right? I dreamed all that stuff, didn’t I? I felt nauseous as the realization swept through me, a gut kick of emotion driving me back and down, hard. Then my curiosity led my mind down the path of pathology, thinking about removing his corneas for the eye bank and his brain for research and how they would prep him at the funeral home and then screamed “NOOOOO! It can’t be! AAAAAAHHHHHHHHH!
My Andrew, how can you be gone? It wasn’t supposed to happen this soon, I thought I was going to be able to see you again, why wasn’t I able to understand what you were trying to tell me? I don’t know, I want to know. I’m so glad I told you what I wanted you to know, and that you spent time with your friends, that you were able to go to your favorite restaurant two days before you died.
I stare now at the word “died” and think it’s impossible, how can it be, that I am writing this about my son? As you yourself said, “The father is supposed to die before the son. This is bullshit.” Yeah, it’s bullshit. And now there is nothing I can do to stop it. As if there ever was.
On Thursday, I was on campus and stopped to look at various pieces of student art. I saw your self-portrait from ninth grade art. Also a booklet, of maybe 20 pages, with a series of abstract drawings, some with dabs of color. Your face, with your left hand up around your chin. I flipped through the booklet. What were you trying to tell us about yourself? There was little detail, as if you were keeping much of yourself private. There were many images, all slightly different, perhaps symbolizing how each of us in your life looks at the same person but sees someone slightly different.
Guess I won’t be needing the van anymore.
I pray to God that your mother and I have the courage to make peace in your name.
It’s time to get going. Time to make arrangements.
That night, my house comes to life thanks to Bev’s wisdom. Andrew’s friends and their parents flood in. The teens crowd into Andrew’s bedroom, chattering, telling stories, laughing, standing, sitting on the floor, lounging on his bed, touching the things that were his. The laughter amazes me. The affection for each other and for Andrew swirls around the room like a cloud of lavender incense. Then I notice they’ve been spraying his lavender cologne. They fill the memory books we had placed there, another Bev suggestion. The gathering resembles a yearbook signing party.
We order pizza.
The parents hang out in the kitchen. Some thank us. They’re surprised we opened our home. They’re moved by the maturing effect the experience has had on their children. To me, it seems only natural. I know how important his friends are to him.
A few days later, inspired, Madelyn and I open our home to our friends. A real wake. Lots of martinis, shaken not stirred.
Bev suggests an open-casket visitation, something she says is essential for teenagers to achieve closure. I’ve learned to trust her. Bill, our funeral director, says, “We’ll need to dress Andrew for the visitation. I’ll just need some clothes.”
“You mean we need to bring you some clothes,” I say, “to put on him?”
“Yes, we’d be happy to do that.”
“No, wait a minute, that doesn’t feel right. I don’t feel right about that. No, I want to do this myself.”
“It will take two people.”
I look at Madelyn. She nods.
We go shopping and settle on a blue Oxford shirt over khaki pants, neat and tidy but not too formal. A belt. One of Andrew’s favorite boxer shorts, some socks. But there’s something missing.
“A hat?”
“Nah, it’ll cover his face.”
It comes to us at the same moment, Madelyn wide-eyed, me laughing. We find him a dark blue long-sleeved t-shirt with his favorite teenage logo down the sleeves. He can wear it under the Oxford, with the Oxford’s sleeves rolled up.
Perfect.
“You know,” I say to Madelyn, “we’re going to have him to ourselves for a little while, while we dress him. We should anoint him.”
“I know. Lavender scented lotion.”
When the time comes, Bill leads us to a spacious, silent, softly-lit room. The air feels cool. Andrew lies on a gurney, under a sheet, his face uncovered. I stare. Madelyn waits next to me, looking at me, looking at him, the shopping bag full of clothes in one hand. I go to him, stand and look at him, then pull back the sheet, the way I might pull a sheet off a sleeping baby. Softly, so as not to wake him. I touch his arm, feeling the cold skin, firm, not hard, feeling desperate sadness and overwhelming affection.
Madelyn hands me the lotion. I squeeze some into my hand and rub my palms together. I hold my hands to my face and take a deep breath, feeling the lavender scent relax me. This will be just like putting on suntan lotion, like I had hundreds of times. I spread the lotion up and down his arms and legs, on his cheeks and chin, carefully around his eyes and on his freckled nose, even behind his ears.
As I work the lavender onto his arms, I feel softly electrified, a transmission of energy going through my hands, into his body, and from there to his soul. Through his cool skin, I receive something that flows back through my hands and up my arms, permeating my whole body. I feel like I’m glowing, channeling something from Andrew, something that changes me to my core. I feel a faint smile on my lips, a whisper of happiness in my heart.
Madelyn helps me dress him. We fix his hair. He looks very cool. We leave with a “see you later.” As we walk out to our cars, Madelyn tells me I needed courage to do this. To me, it was a duty. I simply couldn’t imagine not doing this. What I had felt flowing through my hands and arms was powerful confirmation of my belief.
I drive off. Madelyn has to go the other way, requiring a turn across rush-hour traffic. “I waited and waited,” she tells me later, “and nobody would let me turn. Finally someone stopped, and I looked at the driver to wave a thank-you. And what do you think was hanging from his rear-view mirror? Fuzzy dice. And I thought, ‘Okay, Andrew, you liked the clothes I put on you, you are really doing great, you are in a beautiful place and you wanted to let me know and you brought me fuzzy dice.’ It was perfect.”
The visitation turns into a celebration. The room fills with bouquets, the tables fill with photographs, many I’ve never seen before, contributed by Andrew’s friends. For two days, there are sometimes a couple dozen visitors, and as they had in Andrew’s bedroom, they laugh, tell stories, cry, flirt, write messages in the memory books, tell stories about the pictures, and talk to him through the open casket.
I elect to accompany Andrew to his cremation. “I was the first person to hold him when he came into this world,” I tell Bill, “and I’ll be the last to hold him on his way out.” It will be just me. Andrew’s mother and I are just, well, different.
I can’t actually remember doing this, but I know I did it. Bill pushed the gurney. I walked alongside. Andrew traveled feet first. The wheels hissed. He wore the clothes he’d worn at the visitation. He lay on a thick cardboard tray. He looked like he was sleeping. At the oven, I tucked a Three Musketeers bar into his shirt pocket. With one hand on his tummy, the other cradling his head, I leaned over and kissed him on the forehead. I said, “I love you, Andrew. See you soon.” I stepped back into the hallway. I stopped, leaning against the wall. I stared at the floor. After a while I went out and left the funeral home and walked back to the car in the rain.
Three wrecked weeks later, with Madelyn’s support, I leave Seattle for the mountains. Despite my best efforts to keep it together, I have to get out, let myself feel my sorrow, alone. After three weeks in the Cascades, I roll into Eugene, Oregon, to meet up with Kassie, a massage therapist I knew there. She had promised to help me recover from many days on the road. At her studio, she sits me down to catch up.
When I tell her about Andrew, she asks me if I’d like to speak to him.
“What do you mean?”
She describes a guided breathing process that allows people to connect with those who are, as she says, “on the other side.”
“You mean like having a conversation?”
“It doesn’t always work, but would you like to give it a try?”
Kassie starts me out face up on the massage table. She works fast with scented oil to relax my legs, upper back and neck, soothing music in the background. She pauses to explain the breathing sequence that will shift my awareness. She reminds me that she’ll be there with me. I feel safe, and let go.
I follow her instructions. Soon the ceiling opens to reveal a starry vastness. I feel my body’s orientation rotate from horizontal on the table to vertical.
Andrew appears, walking toward me. He looks terrific, decked out in his coolest clothes, a white baseball cap on backwards, grinning. There’s a glow around him. At first I feel excited, looking him up and down as if he’d just returned from a trip wearing a whole new look. Then I remember what’s happened, and I just bawl. He looks at me, puzzled.
“I’ve been worried about you,” I splutter through my tears, “wondering where you were, how you’re doing.”
He smiles, gives me that look, and reaches out to tap me on the forehead.
“You dork. I’m doing fine. Remember where I am. I’m in heaven.”
My tears stop. Of course. We start chatting. Kassie tells me later she saw tears and heard bits of conversation. That’s what it was, a conversation.
Andrew just shrugs about dying. “Why would you miss me? I’m available, any time. You just have to call me. And I’ve been trying to let you know I was okay. The fuzzy dice? Crystal’s dream?”
Crystal’s dream. Of course. She had told me about it at his memorial. The night he died, before she knew. “He was going up an escalator into a cloud,” she said. “He turned and waved at me, smiling.”
I get this feeling he’s got plans. “Got a date?”
He smiles, gives a slight shrug, neither confirming nor denying.
“You’ve been busy, I guess.”
He nods, then looks left. My grandfather Elmer appears. Elmer Andrew, for whom Andrew was named.
Elmer looks amazing too, in the prime of life, tan and fit, powerful. He has that same glow, greeting Andrew with a wink, giving me a broad smile. They were in cahoots!
The conversation races among us, as if we were hanging out, telling stories, having a good time.
A “time to go” feeling comes up. I thank them, tell them I’d like to see them again. Any time, they say. All I have to do is call. As they walk away and disappear, I feel a huge sense of relief, of release. The earlier tears of grief are now tears of joy. Andrew’s fine. Elmer’s with him. More importantly, they’re with me.
When I sit up, Kassie says, “Something is telling me to turn on the radio. I never have the radio on in here.” She flips it on. Out comes Neil Sedaka’s song Happy Birthday Sweet Sixteen. The next song: KC and the Sunshine Band’s Celebration.
