Duetting: Memoir 50

Duetting: Memoir 50 Robin Botie 0f Ithaca, New York, photoshops an image from a dream about dying.

“It would take a miracle,” the ICU nurses said about the possibility of my daughter’s recovery. But we’d seen Marika pull off miracles before. They said, “Each day on the respirator lessens the chance of her ever getting off.” She’d been under for almost two weeks. Her lungs had not responded to the special drugs they’d ordered. So the Roc Docs used something called PEEP to force oxygen through. Then a hole developed in her right lung.

Her father and I had agreed we would allow no painful interventions, but when Marika’s right lung started to collapse, we let them shove a chest tube between her ribs. A day later, when the short-lived victory from that procedure dissipated and the left lung started to go, we allowed them to plant another tube through her left side. Nothing helped. Her lungs were shot. We continued to hope and pray past the time the doctors would have quit, pulled the plug, and sent us home.

“When you start to hear the same grim prognosis from the four different teams of doctors, it will be time to consider withdrawing life support,” our social worker said.

Withdraw life support. Is that how it was to end? Like this was an everyday procedure— you either produced a miracle, like she’d been doing for the past three years, and get wheeled out of the ICU to the unit down the hall—or you died amidst Code Blue chaos with staff shoving the family out the door before scrambling around to resuscitate and electrocute—or you got unplugged. I hugged myself, and begged my beautiful girl, “Do something, Mareek. Do something NOW.”

We’d never talked about the healthcare proxy. Armed with little more than that signed piece of paper, I did not know how to begin to guess what Marika would want. Would she want to live if she couldn’t sing or walk? If she were tethered to oxygen tanks for the rest of her life, stuck with feeding tubes forever, would she want to go on? What if she was trapped inside her head, could think but not communicate, could feel pain but not move? When it comes to considering death, people grab at every grain of hope, giving up more and more of what they once felt was important for a good life. I was grasping for anything. I’d take meager crumbs. The dregs. But what would she want? Would Marika sit, strapped to a wheelchair with an oxygen tank, living on memories, and feel life was worth living? And not fight, forever, for more?

“She wants everything possible to be done to keep her alive, unless it becomes hopeless,” Rachel said when I called to tell her I didn’t think Marika would make it. “She also told me she doesn’t want to cause more suffering for her family and friends.” Marika said that?

“We should put her on a DNR status, Do Not Resuscitate. So if her heart stops, she won’t receive chest compressions or electric shock to re-start it,” Laurie said. “That would only cause more pain from broken ribs and wouldn’t preserve the quality of her life. But don’t give up on her yet. Her blood pressure is good, her kidneys and liver are working well. Her blood cells and platelets are coming up, so the transplant is working.”
“So we just need a miracle to remedy the small matter of her blasted lungs,” I said.
“She’s been at death’s door before,” Laurie reminded me, “and has pulled out a miracle and survived.”

The Roc Docs said she was sinking. It was just a matter of time. It was not presented to us as a choice: to pull the plug or not pull the plug.
“No, not yet,” I begged on Friday when she’d been pumped by PEEP for multiple days. “Give her the weekend,” I pleaded, clinging to Marika’s feet and urging everyone to whisper, in case she could hear.

On Tuesday, the first day of March 2011, the seventeenth day on sedation, the four teams, one by one, filed in and out saying, “Sorry.” I clutched Marika’s feet and rubbed madly. I watched the life I had guarded for almost twenty-one years drift farther beyond my reach. They’d given us all the extra time they could to wish for a miracle, and over the weekend hope had ebbed away like a receding tide. A strong current was pulling me out into uncharted waters, to a place no one I knew had been before. Whose child dies before their parent? I wondered. How could this be happening?

“It’s time,” I remembered my father announcing at his end.
“It’s time,” the social worker said.
Drained and defeated, Marika’s father and I finally both agreed. I said yes, and signed the paper that said my daughter’s life was to be ended.

My bedside notebook for recording dreams caught only nightmares then: I was fished out of rushing water, dripping wet, and hauled up to the whitewashed docks above by a rope. Caught. I knew I didn’t belong there, that being there meant I’d be executed on the spot. I huddled, cold, wet and miserable, trying to make myself small on the hard dock while my captors considered me. A sympathetic one pointed to a place just above my tailbone, urging the other to shoot there, where it would be kinder. Closing my eyes, I waited for the shot to shatter my bones and end my life…. Later that day, I realized that the tailbone area was where Marika got her spinal fluids drawn and chemo injected. Maybe this was really a dream about Marika. Even in my dreams I had a hard time separating her ordeal from my own.

The second day of March was barren and gray now that we had accepted there would be no more miracles. I moved like mud. Heavy, frozen, lifeless mud. Marika’s life would be taken the next day and I had a dilemma: to tell her or not.

Even heavily sedated, she might be conscious on some level, or in and out of consciousness. But if Marika couldn’t say anything, couldn’t say goodbye or “I love you,” if she wasn’t able to express anything or even move a muscle, what would she do with this information? For the first time ever, her father and I agreed immediately on something. We did not want her just lying there, drowning in fear and anger, unable to communicate. So we whispered and tiptoed around her, holding her hands and head. I did not tell her she was going to die.

What is the bigger tragedy: losing your loved one suddenly without a chance to say goodbye? Or knowing your loved one is close to death and not talking about it? I did not know how to talk about it. So I just stood there, silently, stroking her face with my eyes.

Much later, I would find these lines crossed out, in a song in one of Marika’s journals:
“My mama strokes my hair and tells me I’ll be fine now,
‘We gonna take care of you.’ But her eyes tell me she’s hiding a lie.”

We’d had a conversation or two when she was very young, about how not saying something is like lying. So I was lying. I was not being honest anyway.

There was more. Worse. What, later, I’d give anything to be able to rewind and replay: I did not tell her, “I love you.” As she drifted farther away from me, I did not dare say it. I hadn’t said it enough. Does it mean more when you say it less? Does it mean less when you say it more? And what did it mean to my precious girl that I didn’t say it at that time?

Because if I told her then, “I love you,” she would know it was the end.

 

 

 

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Duetting: Memoir 49

Duetting: Memoir 49 Robin Botie of Ithaca, New York, photoshops a duet of a song written by her daughter who died, in a consideration of The Middle Ground.

“What’s Middle Ground?” I asked Laurie, my sister-the-doctor, at the beginning of February 2011.
“Well, first of all, it’s not a medical term,” she said. “Basically, ‘Middle Ground’ refers to a shift in the treatment plan from an aggressive, do-anything-and-everything-necessary-to-keep-someone-alive approach to a more selective one. So, if Marika’s heart stops, we’re not going to shock it or pound on her chest, but if she gets a reasonably easy-to-treat condition (like a bladder infection or strep throat), we would go ahead and treat that. In a way, ‘Middle Ground’ is a bit like ‘Limbo’, the apartment Marika shares. It’s a place somewhere in between. Between knowing that you’re winning the war and when you get those first inklings that you’re going to lose. So you wait, in Limbo, for a sign, for some hint as to when or whether she can come up with one more miracle.”
“Oh,” I said, and Laurie could hear my dread.
“Middle Ground does not mean that anyone’s giving up,” she said, “but we all know it’s the first step toward that end, the end that no one is yet ready to acknowledge.”

So we were one step closer to that place into which I had not allowed myself to go. Outside, in the ground under the snow, tender tips of crocuses emerged into the wintry world before their time. They’d be gone before spring.

After the late night call from the Intensive Care Unit, when I got back to the hospital, Marika was floating in and out of consciousness. Sleeping Beauty, strung all over in plastic lines, was once again on center stage attended by nurses, aides, all types of technicians, and now, multiple teams. Besides the ICU docs, there was the somber cluster of oncology docs, a very animated squad of infectious disease docs, and a new tiptoeing team from Palliative Care. Bevies of doctors, social workers, and residents took turns entering and exiting her room, taking notes and quietly exchanging comments. A mysterious respiratory infection, they said; we wore masks and gowns around her now. No one really knew why her lungs were failing. When she became the least bit awake, she tried to speak. She yanked her cords and tried to climb out of bed. They gave her more drugs to quiet and contain her. She was fighting everything now.

“Please don’t speak to your daughter,” one of the nurses said to me shortly after I got back. “She is at maximum dosage levels for her sedation drugs, and when she hears you it is difficult to keep her sedated.”
“I can’t talk to her?” I wanted to make sure I’d heard right. In disbelief, I quietly rubbed Marika’s feet. But soon, when I whispered to a nurse, Marika heard me and woke. She pointed at me with an incriminating index finger, as if she could shoot a dagger straight through me. She lowered and then raised her hand, slowly, like a ghost, and suddenly gave me – The Finger.

The horrified nurse sedated her more. Hurt, and afraid of what Marika might do next, I kept quiet. But what I really wanted to do was shout to all the doctors and nurses, “Damn you all! She’s my daughter!” I moped for hours in a funk until I learned she’d given her father the same greeting earlier.

A day later, while I silently rubbed her feet, she opened her eyes.
“Mom!” she mouthed through her tubed and taped lips, looking straight at me. She extended her arms like she wanted to hug me. Her face scrunched up and turned red. Her mouth stretched the tape with a concave bottom lip. She was crying.
“Mareek,” I called, and left my station by her feet to step closer. “Oh, Mareek.” I reached out to hug her. But before I could touch her, the nurse stepped up the sedation. Marika’s eyes rolled back as her lids shut. Her arms dropped in slow motion. Her words, her thoughts, everything was snuffed out. I stood over the still form of my daughter, not able to remember the last time we’d hugged. In my mind I replayed the scene. She’d reached for me. Her eyes had said everything: “Mom, I’m scared. Hold me; help me. I’m sorry. Thank you. Mom, I love you.” I stared at her face and hugged myself, and returned to the foot of the bed. And then the nurse asked me not to rub her feet.

I was blind-sided. I stood there dumbfounded. Foot-rubs were my only connection to my daughter now. I couldn’t just let her lie there alone. She’d wanted to hug me.

Greg, on a tentative seventy-two hour notice to return to Afghanistan, came to Strong to say goodbye to his sister. Marika had known he was hired to go back as a security agent. But she was unconscious now and seemed to hear nothing. He didn’t stay long. He whispered goodbye and turned to go. Suddenly she lunged for him. She flew over the bedrails, tearing the lines that tethered her to the IVs. She grabbed her brother. In seconds, she was stopped and sedated some more.

Rachel arrived for a visit, and I darted out for a fast trip back to Ithaca. Rachel’s eye make-up, the tight skinny jeans and French-tipped nails made me realize how long it had been since I’d seen Marika up and dressed. I must hurry home, I told myself, to renew my driver’s license that would expire soon. Mostly though, I just needed to get out. I needed to drive far and fast.

Rachel ambled down the long hallway with a huge rainbow balloon trailing behind her. And two hours later, at the Motor Vehicle Bureau, I stood before a clerk who tried to get me to smile for the photo ID that would be with me for the next eight years. For eight years, my eyes in that photo would say, “Marika, we need a miracle now.” I faced the camera unable to think of anyone or anything else. Rachel sat with Marika and held her head, reading aloud the goodbye letter she had written, just in case. She drove back to Ithaca that evening, stopping at a liquor store for a bottle of Svedka Vodka to tide her over. I drove back to Strong early the next morning crunching on an apple to keep awake. The Big Meeting was scheduled with the Palliative Care team. So Greg drove to Strong, as did our social worker. My children’s father and his wife were already there. We were going to discuss The Middle Ground and “options,” things I wasn’t able to hear yet. I didn’t want to listen to any of these people. I just wanted to rub Marika’s red painted toes and watch for the tiniest twitch of her pale brow.

 

 

 

 

 

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Duetting: Memoir 50

Robin Botie of Ithaca, New York, photoshops an image from a dream about dying.

“It would take a miracle,” the ICU nurses said about the possibility of my daughter’s recovery. But we’d seen Marika pull off miracles before. They said, “Each day on the respirator lessens the chance of her ever getting off.” She’d been under for almost two weeks. Her lungs had not responded to the special drugs they’d ordered. So the Roc Docs used something called PEEP to force oxygen through. Then a hole developed in her right lung.

Her father and I had agreed we would allow no painful interventions, but when Marika’s right lung started to collapse, we let them shove a chest tube between her ribs. A day later, when the short-lived victory from that procedure dissipated and the left lung started to go, we allowed them to plant another tube through her left side. Nothing helped. Her lungs were shot. We continued to hope and pray past the time the doctors would have quit, pulled the plug, and sent us home.

“When you start to hear the same grim prognosis from the four different teams of doctors, it will be time to consider withdrawing life support,” our social worker said.

Withdraw life support. Is that how it was to end? Like this was an everyday procedure— you either produced a miracle, like she’d been doing for the past three years, and get wheeled out of the ICU to the unit down the hall—or you died amidst Code Blue chaos with staff shoving the family out the door before scrambling around to resuscitate and electrocute—or you got unplugged. I hugged myself, and begged my beautiful girl, “Do something, Mareek. Do something NOW.”

We’d never talked about the healthcare proxy. Armed with little more than that signed piece of paper, I did not know how to begin to guess what Marika would want. Would she want to live if she couldn’t sing or walk? If she were tethered to oxygen tanks for the rest of her life, stuck with feeding tubes forever, would she want to go on? What if she was trapped inside her head, could think but not communicate, could feel pain but not move? When it comes to considering death, people grab at every grain of hope, giving up more and more of what they once felt was important for a good life. I was grasping for anything. I’d take meager crumbs. The dregs. But what would she want? Would Marika sit, strapped to a wheelchair with an oxygen tank, living on memories, and feel life was worth living? And not fight, forever, for more?

“She wants everything possible to be done to keep her alive, unless it becomes hopeless,” Rachel said when I called to tell her I didn’t think Marika would make it. “She also told me she doesn’t want to cause more suffering for her family and friends.” Marika said that?

“We should put her on a DNR status, Do Not Resuscitate. So if her heart stops, she won’t receive chest compressions or electric shock to re-start it,” Laurie said. “That would only cause more pain from broken ribs and wouldn’t preserve the quality of her life. But don’t give up on her yet. Her blood pressure is good, her kidneys and liver are working well. Her blood cells and platelets are coming up, so the transplant is working.”
“So we just need a miracle to remedy the small matter of her blasted lungs,” I said.
“She’s been at death’s door before,” Laurie reminded me, “and has pulled out a miracle and survived.”

The Roc Docs said she was sinking. It was just a matter of time. It was not presented to us as a choice: to pull the plug or not pull the plug.
“No, not yet,” I begged on Friday when she’d been pumped by PEEP for multiple days. “Give her the weekend,” I pleaded, clinging to Marika’s feet and urging everyone to whisper, in case she could hear.

On Tuesday, the first day of March 2011, the seventeenth day on sedation, the four teams, one by one, filed in and out saying, “Sorry.” I clutched Marika’s feet and rubbed madly. I watched the life I had guarded for almost twenty-one years drift farther beyond my reach. They’d given us all the extra time they could to wish for a miracle, and over the weekend hope had ebbed away like a receding tide. A strong current was pulling me out into uncharted waters, to a place no one I knew had been before. Whose child dies before their parent? I wondered. How could this be happening?

“It’s time,” I remembered my father announcing at his end.
“It’s time,” the social worker said.
Drained and defeated, Marika’s father and I finally both agreed. I said yes, and signed the paper that said my daughter’s life was to be taken.

My bedside notebook for recording dreams caught only nightmares then: I was fished out of rushing water, dripping wet, and hauled up to the whitewashed docks above by a rope. Caught. I knew I didn’t belong there, that being there meant I’d be executed on the spot. I huddled, cold, wet and miserable, trying to make myself small on the hard dock while my captors considered me. A sympathetic one pointed to a place just above my tailbone, urging the other to shoot there, where it would be kinder. Closing my eyes, I waited for the shot to shatter my bones and end my life…. Later that day, I realized that the tailbone area was where Marika got her spinal fluids drawn and chemo injected. Maybe this was really a dream about Marika. Even in my dreams I had a hard time separating her ordeal from my own.

The second day of March was barren and gray now that we had accepted there would be no more miracles. I moved like mud. Heavy, frozen, lifeless mud. Marika’s life would end the next day and I had a dilemma: to tell her or not.

Even heavily sedated, she might be conscious on some level, or in and out of consciousness. But if Marika couldn’t say anything, couldn’t say goodbye or “I love you,” if she wasn’t able to express anything or even move a muscle, what would she do with this information? For the first time ever, her father and I agreed immediately on something. We did not want her just lying there, drowning in fear and anger, unable to communicate. So we whispered and tiptoed around her, holding her hands and head. I did not tell her she was going to die.

What is the bigger tragedy: losing your loved one suddenly without a chance to say goodbye? Or knowing your loved one is close to death and not talking about it? I did not know how to talk about it. So I just stood there, silently, stroking her face with my eyes.

Much later, I would find these lines crossed out, in a song in one of Marika’s journals:
“My mama strokes my hair and tells me I’ll be fine now,
‘We gonna take care of you.’ But her eyes tell me she’s hiding a lie.”

We’d had a conversation or two when she was very young, about how not saying something is like lying. So I was lying. I was not being honest anyway.

There was more. Worse. What, later, I’d give anything to be able to rewind and replay: I did not tell her, “I love you.” As she drifted farther away from me, I did not dare say it. I hadn’t said it enough. Does it mean more when you say it less? Does it mean less when you say it more? And what did it mean to my precious girl that I didn’t say it at that time?

Because if I told her then, “I love you,” she would know it was the end.

 

 

 

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