Tag Archives: parenting

Duetting: Memoir 48

Duetting: Memoir 48 Robin Botie of Ithaca, New York, photoshops a duet of a dream she recorded with a song written by her daughter who died with leukemia.

My daughter was measured and marked for radiation. In a waiting area down the hall, I chewed at my cuticles as Marika got the first of her full body radiation treatments. She had to be seared and zapped cell by cell in order to live. It made me nauseous. They wheeled her back to the room on a gurney and she napped the rest of the day as I sat, waiting in the dimmed light by her bedside. At dinnertime neither of us could eat. I gently rubbed her feet before driving off to Hope Lodge.        

At Hope Lodge on Tuesdays I got free massages. Thursdays it was free dinners prepared by a group of med students. I took Bernadette, a cancer patient who lived there, out for port on her birthday, and watched another resident cook aromatic African dishes. In the afternoons I explored Swan’s German Market, the Public Market, the Monroe County Library, and Captain Jim’s Seafood, always bringing back some bit of Rochester for Marika. Each day I exhausted myself into oblivion. And then the transplant preparations got stepped up.

“Preparations,” Laurie said over the cell phone, “is really a euphemism here. What it really means is wiping out her blood cells and immune system with chemotherapy and radiation, and then ‘rescuing’ her with the donor’s cells.”
“Laur, what’s the deal with GVHD?”
“Didn’t you read any of the stuff I sent you?”
“I did, but it sounds better coming from you,” I said.
“Well, Graft Versus Host Disease is a fascinating condition. What can happen, just about any time in the first year or two after the transplant, is that the immune cells in the donor marrow can begin to attack the recipient’s tissues and organs. They still think they have to protect against ‘foreign invaders,’ and are totally clueless that THEY are the foreigners.”
“Yeah, they warned us it could get nasty,” I said, wincing.
“It’s her only shot, though. There are no more drugs capable of giving her a cure,” Laurie said. I knew that. I was still stuck on the part about the donor’s cells attacking tissues and organs “any time in the first year or two.”

It was snowing on transplant day, January 26, 2011. All morning long I watched outside the hospital window and checked online for weather-related transportation delays. Finally, midday, a courier delivered the stem cells in a picnic cooler. I collapsed on the end of the bed. Giddy with relief, I even smiled and joked with my ex-husband who had arrived with his wife and a cake. We gathered around to watch the donor’s blood product slowly seep into Marika’s veins via a long tube in which I pictured tiny cells charging forward on teensy running feet with swords pointing ahead. We had a little birthday party, and toasted to Marika’s new life, with Martinelli’s bubbly apple cider. After, in a trance, I washed my hands in the non-patient bathroom down the hall by the elevators, and sang softly, “Happy birthday to you, happy birthday to you. Happy birthday,” I choked, “dear Marika.” My eyes filled. My jaw quivered, “Happy birthday.” It was like whispering a prayer. Only I was downright pleading for my daughter’s recovery, “To you.”

The next morning, I returned early to the hospital from Hope Lodge. Marika sat in bed peering down at her chest, her head angled to accommodate her good eye. She was flushing out and disinfecting her own port as a nurse gave directions. Glancing up at me, Marika smiled. She looked ready to take on the world. Like she could deal with aggressive foreign cells, or doctors who dared to tell her No, or whatever else life might throw at her.
“Mom. I just got accepted into the University of Technology Nursing Program. I’m going to Australia next year.”

Two weeks later, on a Friday afternoon in early February, she was pedaling away on an exercise bike someone had left in her room. In sweat pants and a tee shirt, she almost looked like her old self, the athlete, the soccer player, the powerhouse-Marika who would sneer at my panting as we jogged around the block together.

The car was packed for my trip home for the weekend. I felt torn, as I always did, whenever I left Strong.
“Don’t forget to put your laundry in the new blue laundry bag,” I reminded her.
“O-Kay, mom,” she said, dismissing me.
“And remember to keep yourself hydrated. No caffeine drinks.”
“Mom, okay.” She rolled her eyes.
“And when’re you gonna take these pills that have been sitting here all morning?”
“Mom! Get a life,” she barked. “Go.” Conscious of my nagging, I silently picked up my computer and the old green bag of dirty laundry. I walked out the door. Without a look back.

Late that night I got a call. Marika had been admitted to the Intensive Care Unit with pneumonia, low blood pressure, and respiratory failure. She’d asked for me as it became more and more difficult to breathe, while her doctors and nurses awaited her consent to be sedated and intubated. Somehow, at home, before racing back to the hospital early the next morning, I slept. I know, because I wrote down my dream.

 

 

 

 

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Duetting: Memoir 44

Duetting: Memoir 44 Robin Botie of Ithaca, New York, photoshops a love poem written by her daughter who died of leukemia.

I remembered that I never talked to my own mother about love either.

“It will get better, it’ll be okay,” my mother had told me one day when I was lovesick and couldn’t hide my reddened eyes. The words seemed so lame then. It took decades to finally find the truth and comfort in her simple response, “It’ll be okay.” Eventually I learned love could keep a person going, could stretch a person to her best. It could make anything beautiful, even winter. Love could keep you fighting for your life. Or it could rip your precious reserves to shreds.

At the end of November 2010, three days after Marika’s concert and still high on our victory, we were admitted to Strong for the stem cell transplant preparations. Punching at her cellphone with frantic thumbs, as I trudged under the weight of our bags, Marika trailed me to our room in the Oncology Unit. OUR room. This was the first time the nurses told me I could have the empty bed next to hers. No more trying to sleep in a reclining chair. No late night drives to Hope Lodge. I stowed away the last of our belongings and noticed Marika on her bed, transfixed on the computer. Crying.

“What’s wrong?” I asked, immobilized.
“I haven’t heard from the schools in Australia yet,” she said in a squeaky pinched voice. She had applied to two Australian universities, hoping to enter a nursing program in January 2012. The Roc Docs had warned it would take a whole year to recover after the transplant.
“Mareek, you just applied a few weeks ago,” I said, “It takes time.”
“I didn’t even get to say goodbye,” she said, tears dribbling down her hot pink cheeks. She turned the computer around to show me a handsome young face with smiling blue eyes and long sandy-blond locks. “He’s going home. He has a girlfriend,” she sobbed.

Slowly, moving closer, in a high voice I asked, “Is this the Australian guy you’ve been hanging with the last few months?” She nodded, choking. Her whole body shuddered, and I remembered the pain of longing for lost love. I should have held her. Comforted her. But it was like I was wading into a cold lake. Tentatively. One frozen limb at a time. I kept my eyes focused on the face on the screen.

“He’s adorable,” I said, not knowing what else to say. She composed herself and added,
“He was always good to me. No man ever treated me better.”
“Then you’ll just have to go back to Australia. It’ll happen,” I said, touching the computer. “It’ll be okay.”

That was all she ever told me about the Australian. That was all I had to know. He made her happy. He made her sad. Somehow, it would all be okay.

 

 

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Duetting: Memoir 40

Duetting: Memoir 40 Robin Botie of Ithaca, New York, photoshops a scene of hugging her luggage for dear life in airport security screenings.

Traveling from Ithaca, New York, is never easy. And to travel from Ithaca to Australia can take over thirty hours if all goes well and none of the three flights is delayed or cancelled. During those thirty hours I will be offered only two small meals and a snack. During those thirty hours, unless I check my luggage or make a fast friend, I will be anchored to my bags. It feels like they’re filled with bricks. Precious gold bricks, considering the irreplaceable contents. I mean, there was no way I was going to ‘check’ my daughter’s ashes so she could ride in the cargo pit of the plane. Nor her stuffed puppy. Nor her baseball cap, nor her polar tech fleece jacket that had already gone to Australia and back with Marika two years earlier. No, I stuffed the box of ashes and everything else into my carry-ons. And now I’ll have to have to squeeze myself, with my backpack and rolling bag, into tiny airport restroom cubicles all the way to Australia. And during those thirty hours, I will fly far enough away from Ithaca on the first day of spring that my whole concept of the year and seasons will be totally rattled upon arrival in Australia on the third day of autumn.

In the Ithaca Airport waiting area I look around at my fellow travelers who are mostly engaged in tablets or smartphones that light up travel-worn faces. No one else is hugging their luggage for dear life or seems close to tears. My first flight is cancelled due to thick fog in Newark. So I am stuck in the Ithaca Airport, talking to Marika’s ashes for almost four hours. And when the new flight is delayed, there is a complete revision of the plan I’d worked on for months. It is still unclear if the newest flight will ever take off.

I hold the bulging backpack on my lap, wrapping my arms around the bulk of it the way I held my belly in the last weeks of my last pregnancy. Back then, if I was safe, Marika was safe, and being good to myself meant being good to her. Worries of cancer then were even more foreign and far away than Australia.

Marika’s first airplane ride was when she was three months old, and weighed nineteen pounds. My father had given me three hundred dollars to “go buy Gregory a toy for his birthday.” Instead, I bought airplane tickets to visit my Dad for a weekend. It was the first time I was traveling by myself with two children. Marika, who weighed only four pounds less than her just-turned-two-year-old brother, was always attached to me then. So she was along for the ride. That was decades ago. Over time we had all become veteran travelers.

Marika-in-the-box and I finally take off from Ithaca.

Traveling is not easy these post-9/11 days, but traveling with ashes is just asking for trouble. The security guard in Newark regards the sealed black box with a frown and furrowed brows. He scans my face. I hold my breath and don’t know where to look, back into his eyes or at Marika’s box. He nods in the opposite direction, “Step over there, please.”

Immediately I take out the documentation: the previously requested confirmation from the Australian Consulate, raised-seal death certificate, crematorium papers, and letter from the funeral home. Some terrorist somewhere must have tried the old box-of-ashes trick because every airport over the course of our trip has a special procedure for handling sealed boxes. Sometimes there is a particular broiler-like rack for ash boxes to get x-rayed on. Agents also run tiny laser-like flashlights over every inch. And then there are tests where they don rubber gloves and rub the box with a colorless liquid on paper that turns blue. Or doesn’t. In the Los Angeles Airport, my heart pounds and I momentarily abandon my shoes at the end of the x-ray screener when Marika and I are separated into different sections as they sonogram her box from every side. I recall a family vacation years back, just months after 9/11, when a last-minute random sampling search had targeted eleven-year-old Marika, separating her from me and her brother who had already charged ahead to board the plane. Torn between the two, I had run after her.

“It’s okay, Mareek,” I tell her ashes after the sonogram. Traveling with ashes, I have someone to talk to who shouldn’t be interfering with the plans. But she does.
“Mom, I’m starving. Pleeease. You promised,” I hear her every time we pass a Starbucks kiosk or airport sushi bar.
“Her remains,” they’d informed me at Bang’s Funeral Home, when I went to pick up the letter affirming that the box was indeed filled with ashes, “are the last physical leftovers, the flakes and chunks and chips of her bones.” Even reduced to crumbs, she’s still bossing me around. And as chunks and chips, she is heavy.

After three flights and what feels like a year later, Marika and I arrive at Sydney International Airport. Getting off the plane, I sense her excitement, especially when the security dog from Sydney Customs comes by, wagging its tail. I was sure, after all the fuss at each airport’s security station, our arrival at customs in Sydney would be the killer. But the security dog does not stop at our carry-on, now laid by my toes along the yellow line on the floor with everyone else’s belongings. The dog goes straight for the punky fat guy with the earring. It trots right by us to his stuff, which really appeals to that dog. And I swear I can feel Marika’s ashes jump for joy as it passes, “Here pup! Awwww, come ‘ere pup.” The dog ignores my precious bundle on the floor. So Sydney is the first airport out of four where my box of Marika is not subjected to swabbings, dustings, x-rays, or severe scrutiny. It took a fraction of a second to pass that canine sniff test, and now Sydney is ours without a single question. And dog-tired as I am, I quickly replicate, in the hotel room, the tiny altar I’d set up at home with her box, photos, stuffed Puppy, and chocolates. Through the hotel window, the early evening light on the harbor calls to me. Any mother and daughter would need to take a break after traveling non-stop together for almost two days. So I scurry out of the room, and right away begin my exploration of Sydney.

 

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Duetting: Memoir 37

Duetting: Memoir 37 Robin Botie of Ithaca, New York, photoshops a sea of highways to illustrate her fear of waves, fear of cancer, and fears of getting lost.

Long Island, New York. I knew nothing about how to navigate my way around the place of my birth. Yet every cell in my body was acutely aware I was back home. My original home. Where Marika was immediately accepted into the drug trial program at North Shore Medical Center. Insurance was going to pay for it so we were going to be stuck on Long Island for most of the summer. I followed the GPS instructions to my cousin Norm’s apartment in Woodbury, twenty minutes away. Norm was graciously giving us his guest room and the living room couch for our first weeks in treatment. We unloaded Marika’s belongings into the guest room before she took off with Rachel. I got the couch.

The girls spent as much time together as they could between Marika’s appointments and Rachel’s classes. Some days Rachel took Marika to Jones Beach, my old hangout. They wore eye make-up and dressed in little bikinis. Marika’s tiny cutoffs sat well below her navel ring. Joined by friends, they wave-surfed and picnicked with wine coolers, beer, and watermelon. They stayed up late, stargazing in Hofstra’s intramural fields where Marika sang long into the night with strangers who brought guitars. They laughed, made up lyrics, and ducked in the gully to avoid the patrolling public safety enforcers. Marika went with Rachel’s friends to a concert in Brooklyn where the tickets were sold out so they climbed over a fence to watch for free. They rollicked all over Long Island while I lay low, reading in Norm’s apartment where it was cool and quiet. Except for a noisy air conditioner. Which I kept off as much as I could stand, not wanting to hike up Norm’s electric bill. When temperatures fell below eighty, I ventured out to hike along Jericho Turnpike. It was harrowing to walk alongside moving vehicles, but I felt oddly alive being whipped by the hot blasts of their passing. I couldn’t simply sit inside all the time. Sometimes I just needed to be out under the sky, to have room to stretch.

The GPS was set to find the medical center, west of Norm’s. It was set to find Rachel at Hofstra, somewhere east. “Have GPS will travel” was my motto. When Marika went out with Rachel, I sometimes took off to find Turkish restaurants, shopping sites, and parks to walk around. Anywhere I could get an address to plug into my GPS. But on one hot afternoon, driving Marika to Rachel’s, we noticed the GPS was dying. First, the feisty female voice quit. Lindsay Lohan with barely restrained attitude stopped ordering me around, stopped badgering me, sneering, “Ree-lo-cating,” like she had to work hard not to add, “dumb bitch, you missed this turn for the fifth time.” If she had eyes, she’d have rolled them like Marika. She ditched me.

Then the map disappeared. By the time I dropped Marika off, the text of instructions had gone entirely as well. I felt abandoned. Terrified, I tried to retrace my way back to Norm’s, but I was lost. I drove on, searching desperately for something familiar. I was in a sea of highways. Wide bands of roads crammed with cars crisscrossed, curled, and tangled over and under in churning waves. Directionless, I wiped my sweaty forehead, and continued with the flow of traffic until an exit advertised a shopping mall. I turned anxiously from the highway, my first intentional move on Long Island without the guidance of a global positioning system, and found the mall’s Best Buy. A half hour later, with the new Garmin Nuvi GPS set to a charming British male voice, I was back on the road again.

Almost every town I passed on Long Island had a memory tucked away: an old boyfriend who lived in Wantagh, a factory my father once owned in Westbury, the parking lot at Roosevelt Field where our family dog died when a friend left it in a hot car. Most haunting about being back though, was the ocean. It was in the air all around me, always just beyond the crowded highways and stretches of shopping centers. It was in my blood. To be on Long Island in the summer was to feel the Atlantic Ocean and the Long Island Sound pulsing in every part of me.

Living in Ithaca, I missed the ocean. So we’d take vacations to beaches, with boogey boards and picnics. My children were fearless in the water, maybe because I’d swung them around in Cayuga Lake and in pools and ponds from early on. But I was always terrified of waves. If I went into the sea, I stood stiffly in the waves, jumping up as high as I could at each swell, keeping the kids close, ready to grab before they could be pulled under. Because as a young girl, one summer on Jones Beach, I was swept away by a wave. Not very far. But I remember being petrified, helpless under the water. The sea was way stronger than I. It was vast and violent below its surface. And it wanted to swallow me. Crying, I finally pulled myself up out of the shallow remains of the wave and looked about. I could not find my mother whose hand I’d been holding only a moment before. Salt water stung my nose and throat. All around, concerned strangers reached out to help me. But I was not supposed to talk to strangers. I was frantic. Lost. Battered by the ocean I’d loved. And where was my mother?

That trauma haunted my dreams. It gave me a tremendous respect for water. It made becoming a lifeguard the hardest thing I ever tried. And it fired a small current in me every time I watched my children in the waves. In no way could I stand the thought of Marika or her brother being lost or scared like that. In pain. In any sort of trouble, with no mother to protect them. Back on Long Island during the summer of 2010, I visited the ocean at Jones Beach only once. I didn’t have to see it more than that. It was in me.

 

 

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Duetting: Memoir 33

Duetting: Memoir 33 Robin Botie of Ithaca, New York, photoshops a duet about cancer deaths and losing a loved one.

“They’re flying in the wrong direction,” Marika said. “The geese. They’re going the wrong way.” She was living back at home after her year in college and second summer in the hospital. We were about to leave for the hospital in Rochester when we heard, overhead, the shrill commotion of geese in their winter migration south. Autumn departures of geese are head and heart-turning events in Upstate New York as the sky fills with their cries, long before one spots the approaching V-formation of their flight.

“Maybe they’re just circling before they leave Ithaca,” I said. She was right. Wrong direction.
“Stupid geese,” she muttered, still staring up at them, expressionless.
“Well, we always end up driving the wrong way, and we have GPS and road signs down here,” I blathered, watching the commotion disappear. She grimaced briefly in my direction and plopped into the passenger seat.

To accommodate the complex treatment in autumn 2009, Marika and I drove to Rochester three times a week with an occasional overnight stay. The Roc Docs were urging us to move up there for two months, for the rigorous schedule of dialysis, spinal chemo injections, and IV arsenic treatments. Social workers had researched places we could rent nearby that had no stairs. But we wanted to stay in Ithaca. Carpenters installed handrails in the house so Marika could reach her bedroom upstairs. None of this fit into Marika’s plans once she’d been sprung from Strong. She wanted to get on with her life, to be free of me and doctors and cancer. The social workers abandoned the idea to have us relocate, and were suddenly helping Marika apply for social services so she could afford her own apartment in Ithaca. There were conversations that didn’t include me now.

Life was gray and clouded, like the autumn sky over Ithaca, as we waited in a holding pattern: Marika hoping for funds to help pay for an apartment, and myself, anxious about locating a donor for a bone marrow or stem cell transplant. Greg was not a match. I was edgy because it was a risky procedure. Also, Marika had completed her chemotherapy, and the protocol demanded a pause in treatments before the transplant. Which meant there was nothing holding the cancer at bay.

On a dark afternoon in mid October, we sat in the Cardiology Center at Strong. Marika was intently studying her cell phone, her head at an exaggerated angle to accommodate viewing texted messages with her good eye. She looked up slowly from the phone, right through me, out across the empty waiting area’s loveseats and end tables.
“Jake died,” she said, more to herself than to me. Then she was silent.

I glanced at her still tearless face and didn’t know what to say. The other almost-adult child with cancer was gone. And in my head something was cracking. Something piercing and threatening that I needed to escape. Much later I would wonder about the mother with a broken heart somewhere in Pennsylvania or New Jersey, but at that moment I muted everything. Marika and I returned home from the hospital and retreated to our individual rooms.

In November, we drove to Roswell Park Cancer Institute in Buffalo for a second opinion about the transplant. The new Buffalo doctor examined Marika and read her history while I waited, crammed into a small conference room with her father and his wife.

Doctor Wetzler had riveting eyes. And a kind of compassion I didn’t understand. We’d never met before and would probably never see him again. We were summoned into the exam room and it felt like when I enter an expensive boutique shop knowing I will not be buying anything. Doctor Wetzler purposefully touched each of us with his deep warm eyes, and then began,
“Marika is not strong enough to survive a bone marrow transplant.” He said, “With her damaged heart, a transplant would be fatal at this time.” There was silence. The world froze still as we digested those words. She could die? The cure we’d been waiting for and counting on for so long could kill her?

“She should have her own stem cells harvested and frozen after several months of chemo,” he continued, looking at Marika, “when you’re free of leukemia cells. For a future transplant. Your heart needs time to heal.”

So. No transplant. No more risky procedure with bleak survival rates, possible organ damage, donor cells attacking normal tissue. Life-threatening complications. No more. Nothing. The lead blanket we’d been living under was suddenly lifted.

So Marika and I quickly headed for the car and drove the few blocks to the Anchor Bar and Grill, home of the original chicken wings. We ordered a feast. She took sips from my beer and waved a wing in the air. And then she told me her news, what I knew was coming sooner or later, the other issue I’d dreaded for months.

“Mom, there’s an apartment and I’m gonna get a monthly check now so I can afford it and Julie lives there and it’s in Collegetown,” she bubbled over in a long overdue spark of excitement. A storm grew in my gut. The wings on my plate grew cold.

 

 

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Duetting: Memoir 29

Duetting: Memoir 29 Robin Botie of Ithaca, New York, photoshops an illustration of her child in the hospital with cancer holding her favorite stuffed animal.

A good lifeguard is a dry lifeguard. Meaning: a good lifeguard is diligent in predicting and preventing trouble. I remembered this from my training days at Camp Scatico. Waking up on a Sunday, I had my cry, did my morning hike, loaded up the car for the week and took off for Strong Memorial. By the time I parked, I had morphed back into my Strong mode. Starting the week off on the right foot, I climbed the eight flights to the ICU, and was on guard again. Ready to meet trouble. I would handle anything Strong sent my way that week.

The Red Cross books on life-guarding and first aid list the first step when you arrive at the scene of an accident: “Survey the scene for danger.” I always got that. My skills in diving underwater and hauling frantic victims to shore were questionable but surveying for danger came instinctively. Always wary of what might lie behind a closed door, in a bag left on the road, at the bottom of a kitchen sink filled with murky water, or in an old takeout container abandoned in the fridge, I exercise caution. So on that Sunday afternoon, arriving back at the hospital, I knew immediately something was wrong.

First clue: Marika’s father and his wife were still there. They wore twin frowns. Marika had been taken off the ventilator earlier that morning, recovering after two unconscious weeks, and now the monitors sat silent and still. I quickly pushed through to her bedside.
“Hi Mom,” she said in a voice higher than I expected. She smiled joyfully at me.
“Hi. Are you okay, Mareek?” I asked, my own voice rising in pitch to meet hers.
“Puppy.” She said, holding up her stuffed animal. I looked back and forth from Marika to Puppy to Marika again, to size up the scene: my Marika smiling at me, waving Puppy. Smiling. At me.
“Hi Puppy, it’s good to see you again.” I shook Puppy’s threadbare paw. Marika eyed me expectantly as I continued making a mental snapshot of things. Skirting familiar territory, in my special education teacher voice I asked, “Umm, can you count to ten, Mareek?” The situation was strange only because it was my own daughter I was assessing. Off on the side, her father was holding his head.

“Okay,” Marika said eagerly. “Okay. One, two. Three. Mom, Puppy.” She shoved Puppy at me like when she was three years old and wanted me to make Puppy dance. Baby Marika. Yow. What was happening? My little girl was back. And she liked to say “okay.” And now she wanted to sing. So we sang.

Surprisingly, Marika could remember many of the words to past camp songs and from beloved Broadway musicals. She now had me working hard to remember the words to Joni Mitchell’s “Circle Game.”
“An’ go around an’ round an’ round an’ round,” she was stuck like a broken record until I finally changed the tune.
“Oh the sun will come out,” I began an old favorite song by Charles Strouse and Martin Charnin from the musical, Annie, and she joined in. “Tomorrow. Betcha bottom dollar there’s no sorrow, come what may.” I held Puppy up and she watched, totally engaged. “Just thinkin’ about, tomorrow…”
“Keep her singing. It’s improving her breathing,” said Robert, the nurse who was adjusting the monitors next to us.
“Lah la la-la … hang on ‘til tomorrow,” we sang.
“Keep it up,” Robert encouraged, “It’s definitely helping.” Marika and I continued, both struggling to remember the words.
“La la-la-la something—something—sorrow,” we sputtered and came to a stop. And suddenly a deep baritone voice resounded around us,
“When I’m stuck with a daaaaay that’s gray and lonely, I just stick out my chin and grin and saaaaay—Oh—,” Robert sang with gusto, with hand gestures. We picked up our cue.
“The sun’ll come out tomorrow, so ya gotta hang on ‘til tomorrow,” the three of us sang loudly. “Tomorrow, tomorrow, I love ya, tomorrow! You’re only a day a-way!”

“Bravo!” I cheered, and turned to Robert. “You’re brilliant. You know all the words.”
“You wanna know how many school musicals I sang in?” Robert said. “I know all the words to everything. But I think we have to stop singing now. It seems to have increased her heart rate.”        

I assumed Marika was just dopey from the lingering sedation, and that she’d come around shortly. But by Tuesday the Roc Docs were conducting tests to determine the cause of her change in mental status. Laurie was on the phone, upset because the doctors wouldn’t return her calls.
“I’m not used to being an obnoxious, interfering relative, but if that’s what I have to be, I’ll do it. I’ve had a few patients die in the past twenty-nine years, and I can’t help but wonder whether the outcome would have been different had I spoken up and made the specialists listen to me,” she said. “I don’t ever want to feel that way about Marika.”

I’d forgotten one small detail in reporting back to Laurie. The doctors wouldn’t speak to her because Marika had arrived at the hospital this time with her friend instead of me, so the forms listing who should be privy to her medical information didn’t have Laurie’s name added. And now there was intense bleeding, nosebleeds so severe they made Marika’s blood pressure drop dangerously low. The doctors put us on alert. The Red Cross called Greg back from Afghanistan to be with his sister. Diagnoses and hypotheses showered down around us. But I was looking right into the eyes of my baby Marika who could barely see me, but was happy to have me there. And that night, after her father and his wife left, Marika’s breathing rate increased. Her oxygen level dropped and her heart rate shot off the charts. Afraid she wouldn’t be able to sustain the effort she was putting out just to breathe, the Roc Docs shoved the tube back down her throat and put her on the ventilator again.

I rubbed her feet and lay low under the tent I imagined around us, sheltering us from the storm that dropped down in a tumult of medical terms. “Encephalopathy.” “Aspiration pneumonia.” “Chemical pneumonitis.” “Necrosis of the red blood cells.” And “leukemia cells in the spinal fluid.” They drifted beyond our small world where I alternately rubbed her feet and snuck around the tubes and trappings to come closer, to sing into her ear in a high choked whisper, “The sun’ll come out tomorrow, so ya gotta hang on ‘til tomorrow….”

 

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