Life kept on while death reigned in Olivia’s body. By the beginning of August, our circumstances at home seemed so intimate that they involved only us.
Some days, I had to battle feeling overwhelmed and terribly anxious about the process, for it was clear we were keeping a failing body alive against impossible odds. Though I had prayed for peace and a clear conscience months earlier, I found that I had neither by summer’s end, because I was terribly afraid. I was afraid of living in the limbo we were in. It seemed we were living before we knew Olivia was dying, and we expected to live again afterward; but while we waited for her to die, we were only waiting, not living.
Olivia took a turn for the worse on August 1 and was lethargic and often unresponsive, trailing off as she answered questions and unable to make eye contact. I anxiously sat at her bedside as she slept that day, counting her shallow breaths and measuring urine output as if having facts I could write down would protect us from the inevitable.
Olivia asked to see people, so we made a list. I made telephone calls and explained to person after person that she was in renal failure and not expected to live. Every time I told the story, I dealt with the shock and grief of the person I was talking with. Relatives, neighbors, teachers, aides; parents of Olivia’s friends, school administrators, the school secretary, the school nurse, the bus driver-everyone was called. Olivia knew everyone, and everyone loved her.
On August 3 and 4, people came visiting. Olivia’s best friend, Elizabeth, came with a necklace and a card that I keep to this day. It said, “Dear Olivia, I’m so so sad. I hope you stop feeling bad. I wanted to tell you that theres a lot of peaple that I know that are up there, like Papa and Ant Temple. I hop you meet them. I love you. I love you! Your friend!”
I felt a limitless abundance of love and energy flowing as people came and went, in spite of the circumstances. All of Olivia’s teachers from school and church over the past decade came to see her. An ocean of love and mercy buoyed us during those days. I’d never felt so much peace and depth of being. People we had not seen for years came to the house, bringing food, flowers, books, music, or just themselves. They held our daughter and told her they loved her. I hadn’t seen her so happy or peaceful in a while.
Our twins turned three years old on August 6, and we had immediate family members over the next day for birthday cake, carrying Olivia to the sofa for an hour or so. Olivia loved any sort of party, and it was only because of her repeated and pointed questions about what kind of cake Sage and Rosemary were having that we even agreed to have a party. Having a party for two children in the midst of the dying of another child seemed ghastly; but there was Olivia, who had hardly eaten for two days, clamoring for cake. And so we had cake with pink and blue flowers, and we blew out candles and we gave Olivia all the Sprite she wanted to drink. And the entire time, we all saw that she looked like she was dying. Though she wanted to eat cake, she had no appetite for it and only pushed one pink flower around on her plate. But her eyes lit up as her sisters opened and shared their toys with her. She was happy.
Later that evening, as I tucked her into bed, I asked Olivia how she was doing. “Not too good, mom,” she replied, “I hope this doesn’t go on too long.” How long do you think it will be, I asked. She shrugged her shoulders. “You don’t know?” I asked. “I do know,” she replied, watching my face.
“Tomorrow?” I asked. She shook her head no. “The next day?” She nodded. “Two days,” she said. “Two more days.” I lay down on the bed with her and my heart was lead. Two days. How could she know? This was a child who still struggled with measuring time. How could she suddenly tell me “two days?” I was unnerved.
But Olivia spent the next day dying. When she woke up, she could no longer swallow, yet she suffered unrelenting thirst. Her “I’m thirsty” sounded like the cry of Christ from the cross to me.
We used sponges to dribble water into her mouth and to moisten her lips. She suffered trying to breathe, and complained of sharp pain in her chest. We’d promised her that there would be no pain, but there was pain. It was terrible watching her suffer. Nobody had anticipated her being so aware as she died, much less her being articulate about it.
Olivia’s suffering that day was intense. The hospice nurse came and offered her morphine, which would relieve her suffering but probably also hasten her death. We explained the options to Olivia again, but she said she didn’t want any of that kind of medicine at all. She said she wanted to be awake, even if it hurt. But she accepted something to help her relax without putting her out completely. And she continued to suffer.
As the afternoon sun cast bands of western light against the walls, Olivia fell silent. She watched as I sat beside or on her bed, doing counted cross-stitch and listening to music. There was nothing left to say as we looked at one another. She was fading quickly.
My friend Linda came to sit with us, an unforgettable act of kindness during a terrible time. We didn’t talk. We just sat with Olivia as family members came and went.
At one point during her long day and evening of suffering, I thought I couldn’t stand to watch her suffer any more. I thought that I might go insane, watching her suffer with her decision. I wanted to force morphine on her-she was only a child! What if I knew better? And yet I had promised to allow her all possible freedom to die her own way, just as she had lived her own way within limits. As a parent, should I set the limit on her suffering when she was so clearly in her right mind still? Did I only want to medicate her so that I could stop suffering?
And so I did what I had promised I would do, which was to go with her as far as I could, as a companion and servant, but not as a judge or dictator of what ought to be. Her dying time was her own business, and God’s. Mine was to do a mother’s labor, no more and no less.
By the next day, Olivia could no longer speak. She was still alert and recognized everyone, but her jaw seemed clamped shut, something the hospice nurse said happened sometimes while people were dying. Olivia drifted in and out of consciousness. When she saw me every now and then, she gave me a sweet smile. She seemed no longer able to hold hands or squeeze anything, so I held her and looked into her eyes as long as she was awake.
All day, Olivia had 40 respirations per minute; normal respirations are 12-20 per minute. Her little body worked so hard and was so strong. I had stayed with her every single moment of every day of that week, leaving the room only to go to the bathroom. During the early hours of the morning of August 9, I thought she might die as I lay beside her in the bed. Finally, I turned the light on and sat and watched her, holding her hand. Because her organs were shutting down and toxins building inside her body, her breath and the entire room smelled like death. The more she breathed, the more overwhelming the smell.
She looked for all the world like she was a breathing body. This terrified me, because she didn’t seem human any more. Her body was there, working; but her spirit seemed to be elsewhere, and I couldn’t go to where she was.
Around 6:30 a.m., I summoned my husband and asked him to pray over us, because I felt I couldn’t bear up any longer. He recalled Philippians 3, “He is able to bring all things into subjection to His will,” and prayed that we would all remain in His will perfectly. I called Olivia’s birth mother and told her that our daughter was dying.
My husband went to work for a few hours, but by 10:15 a.m. it was clear that Olivia was struggling to breathe. I called him to come home, even though a few days prior, I had called him home and it had been a false alarm. Hospice had said it could be a week or more before she died, so we had no idea when or how, exactly, she would go. Every day, and sometimes every hour, was full of uncertainty and doubt over how he should spend his time. I had committed to staying with Olivia every moment; he was committed to carrying everything else. I urged my husband to listen to his heart and do what seemed right; he came home around 11:30 a.m. About 15 minutes before he arrived, I thought Olivia might just stop breathing; but, no. She seemed to want her daddy with her, too.
We settled in with her, and around noon, Olivia had a giant seizure, her whole body going rigid and shaking with every fiber. Her respirations doubled, but her heart rate grew faint and erratic. The hospice nurse arrived on her regular visit, and could get no blood pressure reading. She guessed that Olivia would die within 24 to 48 hours.
Olivia next had three seizures in a row, about five or ten minutes apart. These seemed to discharge a lot of energy, and changed her breathing pattern every time. My husband and I held her, and I calmed and talked to her. Her eyes opened after the second seizure, and she looked me right in the eye. She seemed to be afraid, so I climbed behind her on the bed and cradled her in my arms, getting as much of her body against mine as I could, containing her as she seized. By the fourth seizure, she seemed aware, but only as if from a distance. Peace covered her.
After the fourth seizure, Olivia’s breath came in soft little “huhs” that almost sounded like “that . . . that . . . that . . .” Her teeth almost imperceptibly clicking together. Finally, we were hearing “hut (click) . . . hut (click) . . . hut (click) . . . hut (click).”
Then her last breath came, and everything stopped.
It was entirely quiet. Everything seemed sacred. I was glad for Olivia that her spirit was no longer tethered to a spent body.
Then, we cried.
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