Happiness--A Memoir

by Heather Harpham

  Before she falls asleep, in one of her soft, pre-dream moods of floating affection, she turns to face me. “Mommy,” she says, “it’s all love from me to you.”

  DAY 7

  We can once more see the pale strawberry birthmark at the nape of her neck. I’d forgotten it was there. How is it possible to forget something intrinsic to your child?

  Gracie doesn’t mind being bald. She is delighted to be done with the hair in her bed, on her pillow, down her shirt, in her ears—itching her. Rubbing her bald head reminds me of the tenderness I felt for her five-pound infant body. Touching her scalp is oddly comforting; it is as if she’s imminently reachable, right there, living on the surface of her skin.

  She loves this. “Do my head,” she’ll say, and tuck her skull into the palm of our hands.

  For us, it’s weird. Her baldness triggers a series of chain reactions in the brain. It’s not only that she looks like someone on chemotherapy—which reads cancer, which reads death. And not only that in myth the loss of hair signifies diminishment of vigor, life force, and defensive power. What’s most disturbing is that she’s beginning to look like them, every other child on this ward. It feels like the beginning of an unstoppable slide taking her farther and farther from us.

  We knew; we watched the other kids transmogrify. In the before photos taped to doors, bright-eyed, glossy-haired children lean back in swings and stretch their legs toward the horizon. They lean out of their lawn chair, arms reaching upward, as if to capture a cloud. But the children inside the rooms are swollen, bent, and bald. They look broken. It is as if, one by one, each child has been forced into the decrepit body of an old person.

  I know she’s Gracie, and she knows she’s Gracie, but she looks very little like our daughter. The incremental changes, the hair loss, the swelling around her eyes, the puffy, overinflated quality to her extremities, have accumulated. It is bizarre to look down at your child and not recognize her.

  Suzi writes from India, “Thank God she is on the inside looking out.”

  DAY 8

  She has two kinds of recurring pain: acute cramps right before she vomits and chronic pain from the sores we assume are in her stomach and intestines. She’s spiking fevers and is hypertensive. Bobbie comes in and out; she whispers to Gracie and rubs her feet. The doctors round through, all saying the same thing: her misery is “normal.” The morphine’s ability to abate pain is diminishing. She doesn’t motor her bed up and down anymore. She smiles very little, only as a kind of gift to us.

  Still, her refusal to see herself as sick or deprived is dazzling and a little scary. One minute she is vomiting up stomach bile. The next, she wipes her mouth and picks up her ponies. Back to playing. She has no inner narrator, lamenting her situation, saying, “Oh, I’m sick. I can’t believe I’m sick.” To her, throwing up is sick. The second that is over, there’s no reason not to play. And nothing to be said about it.

  As much as I admire her, I wish she were less stoic and more able to talk about what she is experiencing.

  “Gracie, you can say you hurt,” I tell her.

  Brian scowls. “Let her coping mechanisms work the way they work. If she knows anything better than us, it’s how to cope.” I know he is right, and I resent him for it.

  I begin to pray with her at night. I only do it when we’re alone. When she has enough energy, she’s game. One night, when our single tree rubs its single branch against the window, she says, “That’s the God.” When we pray, she is very casual with God, very offhand. She likes to end her prayers with “Tah Dah!” Sometimes she signs off with “Have a nice night!”

  I imagine her God as a mashup hybrid of Jimmy Stewart, the Wizard of Oz, and the three good fairies of Sleeping Beauty, Flora, Fauna, and Merryweather.

  I also pray. I’m not so casual. I am respectful, subservient. A blatant suck-up. I don’t believe that what—or who—God might be is involved in micromanaging children’s illness or recovery. But neither can I stop from groveling. From doing anything that might give her relief.

  DAY 9

  Tomorrow begins the most critical period, Days 10 through 20, when she is at risk for developing veno-occlusive disease. VOD. Dr. K told us repeatedly that Gracie’s VOD risk was high, given the condition of her liver and the force with which the chemo drugs will hit her system. I keep reminding myself of the many ancient alcoholics in the world—the liver is resilient; it can take tremendous battering and remain functional. Still, every organ has its breaking point.

  VOD shuts the liver down immediately. When the liver is unable to perform its filtering functions, fluids back up in the abdomen and then, ultimately, in the lungs. Patients with severe VOD essentially drown from within. We were told this. And we listened, but we didn’t hear. It was so far in the future, Day 10 through Day 20. Now it is Day 9, and there is no way to get out from under tomorrow.

  DAY 10

  Gracie does not know that the next ten days matter in a way no other days have. She does not know what VOD is. Or double-blind studies or percentages or morbidity rates.

  She knows that Tough Guy never leaves her side, and that she will fall asleep with one parent or another stroking her bald head. She knows that her mouth is sore, her lips are cracked, the pink skin lifting away in thick rinds. She knows that her fevers come in waves. That when her stomach cramps, she can push the red button. She knows that when Bobbie leaves, she will be back. She knows she’s stopped eating. She knows she misses Eden. She knows she is up all night, awake while it is dark, asleep while it is light.

  She’s flipped her days and nights, which is common for kids uncoupled from time; from sunlight, from weather, from family meals, from trips to the pool, the farm, from a walk around the block. All the ordinary signposts that locate us in the day don’t exist here. She knows she wants to go home. And, that she can’t.

  DAY 11

  Gracie and I watch an awards show; the actresses slink across the stage and speak in baby doll voices. Plant your fucking feet, I want to tell them. Talk in your true register. But they are oblivious to this hospital room. Even to Gracie, who looks at them with awe and says, “Their hair has sparkles.”

  Gracie picks up a piece of my hair and begins to suck on the ends. This should charm me; she wants connection. Instead, somehow it bothers me; it seems like a babyish act, a crutch, at the exact moment when I want her to be strong. “Please don’t do that, sweetie!” I say. She shoots me a look out of the corner of her eye, confirming what she suspected, that I’m not where she needs me to be.

  True. Half of me is watching the show, while the other half catalogs signs and symptoms of VOD: rapid water weight gain, distended belly, painful enlargement of the liver, elevated bilirubin, renal failure, jaundice. And the list goes on. The definitive test is a sonogram that, if the liver were shutting down, would show a “reversal of flow” in the main arteries. Essentially fluid running backward through the system, filling the abdominal cavity, filling the lungs.

  We do not want reversal of flow. No one does. We want all the fluids of the body to run in one direction—through the liver, the urinary tract, and out, with ease and flow. Ease and flow.

  DAY 12

  I watch her stomach for an hour before she wakes up. Is it more swollen than yesterday? Hard to tell. Her breathing is labored; her whole body shudders slightly on each out-breath.

  A nurse, not Bobbie, arrives about noon with a measuring tape, as through she is ready to do something as innocuous as take up a hem. Instead, she wraps it around Gracie’s belly, back to front, just below the belly button, and records the number on the chart.

  “Is it better or worse?” I say.

  “This is our baseline,” she says. “Now we’ve got a number against which we can measure growth.”

  “Why didn’t they take the baseline before Day 10?”

  “I’m not sure about that,” she says, sounding defensive. I look at the number she records on the chart. Our world expressed in two digits.

  On th
e floor, here to visit us, are the Pedersons. This is the family we met on the day Gabriel threw Brian’s glasses over the edge of the balcony, when they dropped four floors without breaking. The day the mom, Cindy, and I made friends by exchanging gum.

  Jake is still going to clinic almost daily, and they’ve made the short trip from clinic to our unit to say “Hi.”

  “She’s feeling pretty awful,” I tell Cindy at the door.

  “We won’t stay. Jake just wants to give her something.” I look at Jake; he’s dyed his hair blue. She’ll like that.

  “Come in.” I want Gracie to see this boy who’s traversing the rigors of transplant with a genuinely blithe spirit intact. With a blue head.

  Jake walks into our room with a giant bottle of Sponge Bob bubbles. “These are for you, Gracie. When you get bored of TV you can blow them into the doctors’ faces.” He sits on the edge of Gracie’s bed and looks up at her monitors with intent, as though he might have an opinion about her oxygen saturation or blood pressure. He looks at the lunch tray, untouched. “Gracie,” he says, “you don’t have to stop eating as soon as your mouth hurts, you know. Chew with your back teeth and swallow fast.” The seasoned con passing advice to the newbie—here’s how to adjust to life in the joint. I don’t tell him, and neither does Gracie, that it’s already been many days since she’s eaten.

  Gracie takes the bubbles from Jake and holds them against her chest as she watches the TV, impassive. I stroke her head. Jake’s mom and I exchange information in coded whispers and glances. We run through the transplant people we know in common—who is doing well, who isn’t. We dart our eyes upward to indicate when a child has gone “upstairs,” to the PICU. To intensive care. To the ventilator.

  The PICU is the place we all most don’t want to go. We’ve seen children transferred upstairs for respiratory failure, but we’ve yet to see a child come back down.

  In the middle of our talk, Gracie gets sick. There is nothing in her stomach to vomit; she convulses in heaves, throwing up something that looks like algae. Green. Vibrant green. Jake looks at her small, shuddering body. He doesn’t look away. The Pedersons get ready to leave. Gracie turns away from the TV for the first time that day and says, “Bye, Jake.” Just two words, and the only ones she’s said to him, but a rare acknowledgment. The energy to speak costs her, her vocal cords are stripped raw, but she says it again, “Bye, Jake.”

  DAY 13

  Her stomach is growing. She’s gained two centimeters in diameter since yesterday.

  Am I transmitting fear to her in a thousand plucks at her blanket, a hundred rubbing motions to her head? I order myself to hold still. Don’t smooth, fix, tidy, wipe, brush, arrange—anything. Sit next to her. Quietly. Try that. It is excruciating to do nothing precisely because there is nothing I can do.

  DAY 14

  Another three centimeters. There is a great deal of fluid in the abdomen, and the liver is enlarged, both bad signs. Dr. K orders a sonogram to determine whether there is also “reversal of flow.”

  The sonographer arrives at 10 a.m., the middle of the night for Gracie. I am determined that the woman do her job without waking Gracie. It is crucial she get all the rest she can.

  The sonographer is in her midfifties with an accent I can’t quite place. She is plump and gentle and perfectly happy to go along with my plan to keep Gracie asleep.

  Under Gracie’s nightshirt the skin stretches across her distended stomach, so taut it’s nearly translucent. The sonographer pours warm gel onto the roller ball of an imaging wand. Gracie stirs when the wand touches her body, but doesn’t wake. The wand rolls left and right as the woman gives her full attention to the grainy lunar landscape on the screen. I try to read her face. She looks calm and focused. She reaches all the way over Gracie’s body to get a better view of the other side. I slip both hands under Gracie’s back and press lightly to remind her, in her dream, that she’s with me.

  The woman finishes her work, puts the wand away. I wipe the gel off Gracie’s stomach with a tissue and pull her nightshirt down. It is dark in the room; we’ve left the lights off. I look at this stranger, who has peered inside my daughter’s body. She knows the true condition of Gracie’s liver. The liver is everything, all of everything. If the liver is not working, there is no way to get another. If the liver shows reversal of flow, if this is VOD, we are in a free fall.

  I have to know, I have to ask. And I cannot know, I cannot ask.

  Brian is in New York. My mom is in California. Gabriel is with Denise at the apartment. All our lives hang in the balance—yes or no to reversal of flow.

  The sonographer knows. She says, “Your doctor will deliver the results as soon as possible.” A stock line, but delivered with tenderness.

  Three hours pass before the doctor appears. It’s afternoon. Gracie is still asleep. Brian has arrived back from New York. We stand up when the doctor walks in, shoulder to shoulder.

  Dr. K is not on duty. Instead it’s Dr. P, whom we like. He’s calm, he’s responsive. He seems like the kind of doctor who promises himself, daily, to be a human first. But today he stands as far from us as is possible in this tiny space. He’s near the door, as if poised to leave. We wait for him to speak. He opens his mouth, pauses, and then states the following without fanfare: the liver shows no reversal of flow. I feel Brian’s body relax against mine.

  “Thank you,” I say. Jubilation. I want to kiss Dr. P.

  “Wait,” he says. “We are still concerned by the volume of fluid accumulating in her abdominal cavity.” His speech picks up speed and efficiency. “Though there is no reversal of flow, her other symptoms would indicate that Gracie does have an early iteration of VOD. There is a fifty percent chance it will progress. If it does progress, she has a fifty percent chance of surviving.” As he speaks, his hands hang limp on either side of his body. He moves neither closer to us nor toward the door.

  I hate Dr. P.

  I stand very still, trying to mirror the stillness of his stance. Maybe if I can stand as calmly as he stands, he’ll blink, flinch, take it back. If not, I will drive him from this room.

  A 50 percent chance the VOD will progress.

  And if it does, a 50 percent chance she will not survive.

  These numbers, applied to Gracie, are malicious. They are personal.

  I reject the numbers, en masse, and also one by one. Fuck the percentages given to every patient in this hospital and every other hospital, worldwide. Fuck their arrogant, razored corners, their cleaved sums. Their little stick-fingered hands, rubbing out your odds. Fuck their precise tallies, in neat lines, to the last decimal. Lucky to the left, remainder to the right.

  The numbers are rigid, void, inflexible; all they can do is breathe on you with their viciously clean breath and wait for you to make them correct. The numbers don’t love or know or care to listen.

  They can’t express the central facts of her person. The numbers might know what time of day she was born, but not what the sky looked like, how it was an incandescent indigo. Numbers can’t stroke her head, whisper songs in her ear, fall asleep with the pulse of her breath breaking warm on one cheek. The numbers don’t know how she hums when she eats, that she favors feta cheese and olives, any savory food, over sweets. How, then, can the numbers predict what might become of her?

  Fuck them, one and all.

  She belongs to me and to Brian. She belongs to Gabriel and to herself. She belongs to my mom, whose smile flares every time she says Gracie’s name, and to Brian’s mom, who will still get down on the floor to play with her, at eighty-three. To her dead grandfather, who ran a union and never set eyes on her, and her living grandfather, who reads her The Hobbit over the phone. She belongs to Eden and the friends she hasn’t met yet. She belongs to the person who will love her most as an adult. Her true love, and the smaller loves in between, she belongs to them. She is ours. She belongs to us, with us, with me. She is mine. I will not hand her over.

  I know other parents in this hospital, on this
ward, in this room, have despised the numbers. Have tried to lash their child, psychically, to their own body with the twine of love, righteous anger, magical thinking, with anything, everything, they had. I know my sense of possession, of power, is as frail, as flawed, as theirs. But I use it all. I will mow the fucking numbers down, numeral by numeral, until we boomerang back. To zero. Zero. Where there is no chance that she can be taken. None at all.

  I call Cassie, whom I have always called. I tell her I’m terrified. I explain the numbers.

  She does not sound calm, and I love her for this.

  DAY 15

  A day worse than yesterday. She’s in misery. She’s spent the day vomiting blood in increasingly bright and large volumes. While she was napping, a pool of blood collected in her mouth. When she sat up, it dripped down her chin onto her pajama shirt, settling into the shape of a deformed red elephant, hind legs bent, as if in some odd elephant prayer.

  “Why am I bleeding in my mouth?” she asks. “What is wrong with me?”

  Later she spikes a fever, and her blood pressure refuses to come down.

  Brian and I pass worry back and forth, a toxic, contagious vapor we share.

  When she falls asleep, Brian says, “Let’s imagine today as her low point. Tomorrow she is going to feel better, and every day after, she’ll gain more ground.”

  That’s one possibility. The other breathes under the door, stretches out beneath the bed, a dog with a midnight coat we refuse to recognize.

  DAY 16

  We have less Gracie than we arrived with. Less hair, less breath, less appetite, fewer heartbeats per minute. Less of her voice making the ponies talk, fewer jokes, fewer demands, less of her hands forming shapes in the air as she speaks. The law of diminishing returns, whatever that means, keeps coming to me.

  I’ve begun to do grotesque emotional calculations in the abstract.

  By day I wonder—if one (not me!) were to lose one’s child—is there a best-case scenario? Is it better to lose your child in increments, to a protracted illness so that you have time to encapsulate them in your love, to say everything? Or better to lose your child mysteriously, without confirmation of death, so that hope resides, co-occupant, with grief?