waiting in fear
We waited in fear, but didn’t tell our daughter that her hospitalizations were futile and would eventually end in complete renal failure and death. How could we tell our child such a thing? We didn’t want to believe it ourselves.
We waited for Olivia to be well enough to come home–and then to return to school. When she finally did, a quiet, fearful nervousness settled in a knot beneath my heart–a knot that tightened and grew for the next eight months.
When I’m unsettled, I go to extremes–I must either plan, organize, or clean, or I must be completely still. If stillness takes over, I’ll sit in a pew, stretch out on a lounge chair in the sun, lie across my bed, or rest my head on the table with my eyes closed. If action takes over, I need to do something with a clear purpose; mindless movement like walking, running, or biking won’t do. I couldn’t change the fact that my daughter was dying, so I fixated on what I could control. I made lists–compulsively.
preparing for goodbye
In April, a week before Olivia’s birthday, I listed what I wanted for Olivia and our family as we walked her home, and afterward:
- Dignity. No artificial prolonging of life without hope for real quality of life.
- Peace. A peaceful, pain-free death for Olivia, among family.
- Protection from bureaucrats and authorities.
- Protection against medical torture.
- God’s perfect timing.
- Wisdom and discernment. How would we know what to do for her, how to do it, and when to do it?
- Financial provision for medical and funeral expenses, which would be substantial.
- Clear conscience. Strength and grace to live well with Olivia as her health failed.
We had a few false alarms—times when Olivia seemed off, not quite herself—prompting one of us to rush her to the emergency room in alarm. Otherwise, despite my lists of intentions, we had no real plan and no idea how to organize events as they unfolded.
insurance inferno
In the meantime, our insurance company required that a local pediatrician give a referral to the specialty clinic pediatrician at the teaching hospital in our capitol every single time Olivia needed to be seen in hospital. I still sometimes imagine a special circle of hell, as per Dante’s Inferno, for insurance companies.
Thus, in addition to the team of specialists who had seen our child for a decade, insurance required us to see a pediatrician who, heretofore, had seen Olivia once.
Dr. Jackson was an attractive brunette, petite, slender, and with perfect skin. She had earnest brown eyes that nearly convinced me that Team Olivia up at Children’s Hospital were deviants with their dire predictions of impending doom. Leaning forward, touching me on the knee, she implored, “Let’s see how long we can keep her going.”
Let’s see how long we can keep her going.
Olivia sat beside me soberly, reading the earnestness of the Strange Doctor, and the flamethrower in my eyes. I wanted to come unglued, but understood that everything Olivia needed depended on having a wise and calm mother. The specialists who knew, followed, and treated Olivia regularly were urging us to make plans, to involve Hospice, and to give Olivia what we knew she needed.
Now we were trapped between a local physician who didn’t know Olivia–who knew us only through our healthy children–and wanted to see how long we could keep her going, as if my glorious child were just a battery that needed recharging.
Oh, it was a struggle to exercise self-control, for “Let’s see how long we can keep her going,” seemed a horrifying approach to our child’s terminal illness.
resisting reality
The truth of the matter is that our local pediatrician put into one brief sentence what many, if not all, parents struggle with when their child is dying–indeed, probably what we experience when anyone we love is dying.
We can’t believe it. We don’t want to believe it. We don’t want to let go. We don’t want them to die. We can’t imagine life every day, for the rest of our lives, without that person. We hang on, trying to “see how long we can keep her going.”
We can’t believe it.
We don’t want to believe it.
We don’t want to let go.
We don’t want them to die.
We can’t imagine life without them.
We hang on, trying to
“see how long we can keep her going.”
In the end, such thinking proves to be a resistance to reality, for the dying will die.
Echoing the ‘a time for everything’ verses in Ecclesiastes, I believe the universe moves in a beautiful, synchronized rhythm, bringing forth each moment in its time–whether the birth of a child, the death of a child, the planting, the culling, or the harvest.
In the context of such belief, trying to extend life through medical science or sheer willpower feels like a violation of the natural rhythm of the universe–a sacrilege against its steady tick, tick, tick.
praying
Later that week, while my children napped, I sat in our girls’ darkened bedroom, rocking in the big oak rocking chair, and prayed. I appealed to the God of Love and Wisdom, in whom I deeply believed. I called upon my ancestors and Olivia’s, our constant counselors and guides who would one day welcome us home. I invoked my wisest Self.
“What should I do about Olivia?” I asked. “What should I do?”
This is what followed:
“Yes, of course. The jeweler had added an extra diamond to make the design symmetrical–we laughed about it, and I warned, ‘I’m not having another child around here!’”
“You wondered about that last diamond, didn’t you?”
“Yes, yes, Lord, I did.”
“Do you know who your umpteenth child is?”
“Who, Lord?”
“It is I, because whatever you do for one of the least of these,
you have done unto Me. If I were Olivia, what would you do for Me?”
This clarified everything. I knew what to do.
For Jesus, I would muster the courage to help Him be comfortable and die at home. I would not force Him into procedures and hospitalizations that hurt him, or only prolonged life rather than improving it.
I would want the same thing done for myself, but somehow hearing the voice of one lone doctor suggesting, “Let’s see how long we can keep her going” gave me the hope that we could keep her going, that we could hang onto Olivia’s life for as long as we needed and wanted to, that somehow this wasn’t real and she could be kept alive.
I didn’t want Olivia to die and go into the earth.
Our first reactions to prophecies of death always seem to be like Peter’s after the Lord prophesied he’d soon be betrayed and would die:
“No, Lord, may it never be!” But Jesus rebuked Peter, saying get thee behind me, Satan.
Jesus was acutely aware that his time was drawing near. He was determined to journey to Calvary to fulfill his divine mission, understanding that anyone who opposed him was, in essence, defying destiny itself.
I neither wanted to delay nor hasten dear Olivia’s passing. I simply wanted to walk her home, moving with her through the final stretch of her journey.
It took me a long while to discern what to do, and how to go with her as far as I could.
collapse
I called hospice two days later. The director told me that the very day I had been sitting in my babies’ room, praying, she had felt they were missing someone on their service roster and prayed, “Lord, have that person call me.” I was the next person to call and request help.
Before we could get Olivia enrolled in hospice, though, she became ill again and had to be taken to the doctor. We had to take her to the very doctor who wanted to see how long she could keep Olivia alive. Our daughter was acidotic and dehydrated again. Dr. Jackson sent us up to the teaching hospital in the city, finally understanding why Olivia’s medical team had recommended Hospice.
I stayed with Olivia for six hours, and then my husband relieved me so I could go home and tend the children there. We had a baby who was barely walking, twin two-year-olds, and other children besides. They all needed their mother.
At the hospital, Olivia’s veins collapsed so that nobody could get an IV into her. For ten hours, many different medical personnel–interns and nurses, physicians and phlebotomists–tried to get a vein that would take an IV, but nobody could do it. My husband called around midnight to tell me that Olivia was gravely ill and might die.
I wanted to tear my hair in anguish, terrified that Olivia would die in a whirlwind of chaos—surrounded by strangers in scrubs and white coats, frantically poking at her, forcing fluids that might ease her symptoms but would only hasten renal failure and death. None of it could heal what was killing her. This wasn’t what we wanted for Olivia—a death in the midst of panic, in a sterile room, instead of in the embrace of love.
My breath came in short gasps as I frantically called friends, desperate for someone to stay with our other children so I could rush to the hospital and be with Olivia. But then, just as my finger hovered mid-air, ready to dial, a realization struck me: if I couldn’t trust God with my child, then how could I claim to truly trust Him with myself? My hand fell away from the phone. I stood there in the dark, trembling, lost in thought.
As I wrestled between love and fear, the phone rang. It was my husband. The Medivac team had arrived. A former U.S. Army combat medic had found a vein, and Olivia was receiving fluids. Almost immediately, she had begun to revive. She was holding his hand—she could even squeeze it.
“they can’t fix me, can they?”
After this hospitalization, nobody wanted to experiment with Olivia’s life again, not even our local pediatrician, who agreed that Olivia needed hospice care, that a hospital was no place to die if a person could help it.
Olivia came home and was enrolled in hospice care. We told her that this last hospitalization would truly be the last–that she’d not return to the hospital after this.
“No more?!” she exclaimed, incredulous, her big brown eyes wide with amazement.
“No more,” I replied.
Olivia was a deeply perceptive child. The amazement and joy on her face quickly faded into a frown. Leveling a serious look at me, she asked, “They can’t fix me any more, can they?”
“No, honey, they can’t.”
“I’m going to die, aren’t I?”
“That’s what they say.”
We lay there on her bed, the western sun shining through the window blinds and trees outside, casting an ever-moving pattern of shadow and light across us on this typical summer day, and held one another.
The clock on her bedside table tick-tick-ticked as we lay there silently, and dreamed.
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