{"id":2864,"date":"2021-01-11T07:10:18","date_gmt":"2021-01-11T12:10:18","guid":{"rendered":"https:\/\/robinbotie.com\/blog\/?p=2864"},"modified":"2021-01-11T16:02:26","modified_gmt":"2021-01-11T21:02:26","slug":"duetting-memoir-50-2","status":"publish","type":"post","link":"https:\/\/robinbotie.com\/blog\/duetting-memoir-50-2\/","title":{"rendered":"Duetting: Memoir 50"},"content":{"rendered":"

\"Duetting:<\/a><\/span><\/p>\n

\u201cIt would take a miracle,\u201d the ICU nurses said about the possibility of my daughter\u2019s recovery. But we\u2019d seen Marika pull off miracles before. They said, \u201cEach day on the respirator lessens the chance of her ever getting off.\u201d She\u2019d been under for almost two weeks. Her lungs had not responded to the special drugs they\u2019d ordered. So the Roc Docs used something called PEEP to force oxygen through. Then a hole developed in her right lung.<\/span><\/p>\n

Her father and I had agreed we would allow no painful interventions, but when Marika\u2019s 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.<\/span><\/p>\n

\u201cWhen you start to hear the same grim prognosis from the four different teams of doctors, it will be time to consider withdrawing life support,\u201d our social worker said.<\/span><\/p>\n

Withdraw life support. Is that how it was to end? Like this was an everyday procedure\u2014 you either produced a miracle, like she\u2019d been doing for the past three years, and get wheeled out of the ICU to the unit down the hall\u2014or you died amidst Code Blue chaos with staff shoving the family out the door before scrambling around to resuscitate and electrocute\u2014or you got unplugged. I hugged myself, and begged my beautiful girl, \u201cDo something, Mareek. Do something NOW.\u201d<\/span><\/p>\n

We\u2019d 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\u2019t 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\u2019d 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?<\/span><\/p>\n

\u201cShe wants everything possible to be done to keep her alive, unless it becomes hopeless,\u201d Rachel said when I called to tell her I didn\u2019t think Marika would make it. \u201cShe also told me she doesn\u2019t want to cause more suffering for her family and friends.\u201d Marika said that?<\/em><\/span><\/p>\n

\u201cWe should put her on a DNR status, Do Not Resuscitate. So if her heart stops, she won\u2019t receive chest compressions or electric shock to re-start it,\u201d Laurie said. \u201cThat would only cause more pain from broken ribs and wouldn\u2019t preserve the quality of her life. But don\u2019t 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.\u201d<\/span>
\n\u201cSo we just need a miracle to remedy the small matter of her blasted lungs,\u201d I said.<\/span>
\n\u201cShe\u2019s been at death\u2019s door before,\u201d Laurie reminded me, \u201cand has pulled out a miracle and survived.\u201d<\/span><\/p>\n

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.<\/span>
\n\u201cNo, not yet,\u201d I begged on Friday when she\u2019d been pumped by PEEP for multiple days. \u201cGive her the weekend,\u201d I pleaded, clinging to Marika\u2019s feet and urging everyone to whisper, in case she could hear.<\/em><\/span><\/p>\n

On Tuesday, the first day of March 2011, the seventeenth day on sedation, the four teams, one by one, filed in and out saying, \u201cSorry.\u201d I clutched Marika\u2019s feet and rubbed madly. I watched the life I had guarded for almost twenty-one years drift farther beyond my reach. They\u2019d 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?<\/span><\/p>\n

\u201cIt\u2019s time,\u201d I remembered my father announcing at his end.<\/span>
\n\u201cIt\u2019s time,\u201d the social worker said.<\/span>
\nDrained and defeated, Marika\u2019s father and I finally both agreed. I said yes, and signed the paper that said my daughter\u2019s life was to be ended.<\/span><\/p>\n

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\u2019t belong there, that being there meant I\u2019d 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….<\/em> 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.<\/span><\/p>\n

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\u2019s life would be taken the next day and I had a dilemma: to tell her or not.<\/span><\/p>\n

Even heavily sedated, she might be conscious on some level, or in and out of consciousness. But if Marika couldn\u2019t say anything, couldn\u2019t say goodbye or \u201cI love you,\u201d if she wasn\u2019t 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.<\/span><\/p>\n

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.<\/span><\/p>\n

Much later, I would find these lines crossed out, in a song in one of Marika\u2019s journals:<\/span>
\n\u201cMy mama strokes my hair and tells me I\u2019ll be fine now,<\/span>
\n\u2018We gonna take care of you.\u2019 But her eyes tell me she\u2019s hiding a lie.\u201d<\/span><\/p>\n

We\u2019d 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.<\/span><\/p>\n

There was more. Worse. What, later, I\u2019d give anything to be able to rewind and replay: I did not tell her, \u201cI love you.\u201d As she drifted farther away from me, I did not dare say it. I hadn\u2019t 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\u2019t say it at that time?<\/span><\/p>\n

Because if I told her then, \u201cI love you,\u201d she would know it was the end.<\/span><\/p>\n

 <\/p>\n

 <\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

“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 […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"categories":[2172],"tags":[2137,2182,2189,2044,2183,2123,2090],"class_list":["post-2864","post","type-post","status-publish","format-standard","hentry","category-2172","tag-daughter-with-cancer","tag-dream-about-dying","tag-duetting-memoir-50","tag-mother-daughter-relationship","tag-need-a-miracle","tag-parenting-through-cancer","tag-young-cancer-patient"],"aioseo_notices":[],"_links":{"self":[{"href":"https:\/\/robinbotie.com\/blog\/wp-json\/wp\/v2\/posts\/2864","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/robinbotie.com\/blog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/robinbotie.com\/blog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/robinbotie.com\/blog\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/robinbotie.com\/blog\/wp-json\/wp\/v2\/comments?post=2864"}],"version-history":[{"count":0,"href":"https:\/\/robinbotie.com\/blog\/wp-json\/wp\/v2\/posts\/2864\/revisions"}],"wp:attachment":[{"href":"https:\/\/robinbotie.com\/blog\/wp-json\/wp\/v2\/media?parent=2864"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/robinbotie.com\/blog\/wp-json\/wp\/v2\/categories?post=2864"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/robinbotie.com\/blog\/wp-json\/wp\/v2\/tags?post=2864"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}