We didn’t tell our daughter that her hospitalizations were futile and would eventually end in complete renal failure and death. How can you tell your child such a thing? We didn’t even believe it ourselves, yet. And so we waited. We waited for her to improve, and when she did, we took her home. She went back to school and I watched her with a fearful nervousness that grew a knot just under my heart, a knot that stayed and grew for eight more months.
I’m a planner. When I’m disturbed, I go to extremes. I must either plan, organize, or clean something, or I must be completely still and quiet. I like to sit on a pew, lie on a lounge chair in the sun, lie across my bed, put my head down on the table and close my eyes. Or I have to move. Walking, running, or bicycling aren’t right for this; I need to be doing something, accomplishing some end. This was particularly true as I considered the fact that my daughter was dying: I couldn’t do anything about that. So I compulsively did things that I could do something about.
I made lists. In April, a week before Olivia’s birthday, I listed what I wanted for Olivia and for our family during her dying time and afterward:
- Dignity; to not artificially prolong her life without hope for real quality of life (such as dialysis without hope of a transplant).
- A peaceful, pain-free death for Olivia, among family.
- Protection from bureaucrats and authorities.
- Protection for Olivia against medical torture.
- God’s perfect timing.
- Wisdom and discernment for us; 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.
- A clear conscience; strength and grace to live well with Olivia as her health failed.
- Peace for Olivia and for us.
We had a few false alarms, times when Olivia was acting odd and was not her usual self, and when one or the other of us felt so alarmed that we rushed her to the emergency room. Though I had lists of what we wanted, we had no plan and no idea how things would work in reality. Our local pediatrician said, “Let’s see how long we can keep her going,” while the specialists who saw her more regularly at the hospital and clinics she attended urged us to make plans, to involve hospice, so that Olivia could have what we wanted her to have. We were caught between a local physician who knew almost nothing about our daughter, and the doctors who saw and treated her every few months, and who had known her since she was two years old.
Oh, it was a struggle. First-born daughters, in particular, are such good law-abiding citizens. We want to do everything oh so well and oh so correctly, dotting every “i,” crossing every “t” with exactitude. I found myself in a situation in which I couldn’t please everyone, and in which pleasing people and getting along shouldn’t even be a question. But suddenly, it was a question; we had dueling physicians, and our child was caught in the middle. “Let’s see how long we can keep her going” was a horrifying approach to a child’s terminal illness, but it also put into one brief sentence exactly what parents struggle with when their child is dying–indeed, probably what goes on in us 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 without that person. And so we hang on for dear life, trying to “see how long we can keep her going.”
In the end, this can be a resistance of the time for everything. I don’t believe that God dictates what time is perfect for what event, but I do think that God holds the universe in Himself. And I think that the entire universe works together in a beautiful way to bring about times for things, whether the birth of a child or the death of a child or of anyone else; whether the time to plant or the time to cull or reap. In the context of such belief, seeing how long medical science or human will power could keep another human being alive would be a violation of the universal clock, a sacrilege against its tick-tick-tick.
So, while my children napped one summer day, I sat in our girls’ darkened bedroom, rocking, and prayed, “Lord Jesus, what should I do about Olivia? What do you want me to do?” And this is what followed:
“Remember Mother’s Day this year, when the children gave you that mother’s ring with umpteen tiny diamonds in it, a diamond for each child?”
“Yes, of course. And the extra diamond that had to be there to complete the ring-we laughed about it because 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?”
“It is I, because whatever you do for one of the least of these children, you have done unto Me. If I were Olivia, what would you do for Me?”
This made it all clear. 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, 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 saying, “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. She wouldn’t have to die and go into the earth. Our first reactions seems always to be like Peter’s was after the Lord had told the disciples that he was soon to be betrayed and to die, “No, Lord, may it never be!” But Jesus rebuked Peter, saying get thee behind me, Satan. Because Jesus knew his time was near, and he was going to Calvary to do what he had come to do, and anyone who stood in his way was thwarting an age-old plan. I didn’t want to thwart anyone, but neither did I want to hasten death. I wanted to go along with the deep current of the timing for my daughter’s life, and it took me a long while to discern what to do, and how to go with her as far as I could.
I called hospice two days later, and the director told me that the very day I had been sitting in my babies’ room, praying, she had felt that they were missing someone on their service roster, and had prayed, “Lord, have that person call me.” And I was the next person to call and request help.
But before we could get Olivia enrolled in hospice, she became ill again and had to be taken to the doctor. We took her to the very doctor who wanted to see how long she could keep Olivia alive; and our daughter was acidotic and dehydrated again. We were transferred to the teaching hospital in the city, and after about six hours my husband came to relieve me so that I could go home and tend the children there. We had a baby who was barely walking and twin 2-year-olds, and other children besides, and they all needed their mother.
At the hospital, Olivia’s veins collapsed so that nobody could get an IV into her. For ten hours, different medical personnel, from interns to nurses to physicians to phlebotomists tried to get a vein that would take an IV, but nobody could do it. My husband called me around midnight and said that Olivia looked gravely ill and might die. I practically tore my hair out of my head in anguish, fearing that she would die in a hospital with only my husband there, and people frantically poking her to give her the fluids that would relieve her symptoms but would never heal the ills that were killing her. This was not what we wanted for Olivia, a death during an emergency in a place where she was surrounded by panic, not by love.
My breath came in short gasps as I frantically called friends who could come to be with our other children so I could rush up to the hospital and be with Olivia. But then suddenly, while my finger was poised to dial the telephone, I realized that if I couldn’t trust God with my child, then I was kidding myself if I thought I really trusted Him with myself. I replaced the phone and stood there in the dark, trembling and thinking.
As I was standing there, considering love or fear, the phone rang and it was my husband, calling to say that the medivac people had come down and had gotten a vein, and Olivia was receiving fluids now, and she had almost immediately started to revive, and was holding his hand and could squeeze it.
After that, nobody wanted to experiment with Olivia’s life again, not even our local pediatrician, who said that Olivia needed hospice care, and that a hospital was no place to die if a person could help it. And so Olivia came home, and was enrolled into hospice care. We told her, after this last hospitalization, that it would be her very last one, that she would never have to return to the hospital after this. I can never forget the joy that crossed her face. “No more?” she asked, incredulously. “No more,” I replied.
But Olivia was not a stupid child, even if she had some intellectual deficits. Almost as soon as the joy over never having to return to the hospital sank in, she leveled a serious look at me and asked, “Because they can’t fix me any more, can they?”
“No, honey, they can’t.”
“I’m going to die, aren’t I?”
“Yes, 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 we held one another.
The clock on her bedside table tick-tick-ticked, and we lay there silently, and dreamed.