Her Dying Time | 2

The year before our daughter died, we’d spent a great deal of time in hospitals. Our twins had nearly drowned; my husband had been electrocuted; our newly-adopted daughter had been hospitalized with pneumonia; my daughter-in-law nearly bled to death after childbirth, and Olivia had been hospitalized twice. Our son had undergone major surgery and had returned home needing a great deal of medical care. It was exhausting. I was not myself that year.

ico7 by you.Still, nobody had died. I recall greeting the new year with hope and a shelf full of Y2K provisions just in case the alarmists were right and the entire economy came crashing down around our heads. We could survive on pork and beans and macaroni and cheese for awhile, right? I have to smile wryly when I look back on the national Y2K fear, because what we feared would happen was nothing compared with what actually did happen during our own private Y2K crisis.

Olivia ended the year with a stay in PICU after going into shock due to dehydration. The residents had glared at me, as if I’d been withholding water from my poor little foster child, even though I told them that she was not a rented child, but my own daughter, and was being seen regularly at several clinics at that very hospital. Afraid and full of dread, I made the daily trips to and from the hospital, praying the whole way and asking God, “What’s going on here? Help me to see with Your eyes, O Lord. I’m afraid, and I don’t know what to do for my daughter. Help us!”

ico8 by you.

I love the Lord, because He hears my
 voice and my supplications
Because He has inclined His ear to me,
Therefore I shall call upon Him as long as I live. 
The cords of death encompassed me, 
And the terrors of Sheol came upon me;
I found distress and sorrow. 
Then I called upon the name of the LORD: 
“O LORD, I beseech Thee, save my life!”
(Psalm 116, NAS)

ico1 by you.

One morning I pulled into the parking garage across from the hospital, having put a new CD into the CD player. It was Andrea Bocelli, a Christmas gift from a friend. I’d never heard him sing before. As the opening bars of Time to Say Goodbye played and Sarah Brightman began to sing, I felt myself transfixed even though I didn’t understand the Italian. How unbearably sweet and full of longing and sorrow it was. Every thoughtful pause led to another, and suddenly she sang, “time to say goodbye,” and I realized that this wasn’t about a CD someone had given me for Christmas. It was about a time for everything, a time to say goodbye, a time to die, and about Olivia and her impending death. I’d had no physician prophesy to me, but I knew. I knew in that moment, in the core of my being, that Olivia was going to die, and I sat in my car in the parking garage of the hospital that had become so familiar to us, and I cried and cried and cried.

ico9 by you.

Time to say goodbye

Sarah:
When I’m alone I dream of the horizon and words fail me.
There is no light in a room where there is no sun
and there is no sun if you’re not here with me, with me.
From every window unfurls my heart the heart that you have won.
Into me you’ve poured the light,
the light that you found by the side of the road.

Time to say goodbye.
Places that I’ve never seen or experienced with you.
Now I shall, I’ll sail with you upon ships across the seas,
seas that exist no more,
it’s time to say goodbye.

Andrea:
When you’re far away I dream of the horizon and words fail me.
And of course I know that you’re with me, with me.
You, my moon, you are with me.
My sun, you’re here with me with me, with me, with me.

Time to say goodbye.
Places that I’ve never seen or experienced with you.
Now I shall, I’ll sail with you upon ships across the seas,
seas that exist no more,

Both:
I’ll revive them with you.
I’ll go with you upon ships across the seas,
seas that exist no more,
I’ll revive them with you.
I’ll go with you.

You and me.

ico8 by you.

When I went up to the PICU, I saw that rounds were in progress, and I noticed Olivia’s nephrologist, Dr. Williams, with several residents around her bed. Until that morning, nobody had been able to tell us what, exactly, was wrong with our 11-year-old daughter, but we knew it involved her kidney function.

As I approached, Dr. Williams turned a kindly but serious face toward me and began to talk. The look on his face told me what was coming: your daughter is dying. He said that before we had even adopted Olivia, reflux of urine into her kidneys had destoryed the entire core (renal medulla) of her kidneys. By the time we adopted her and a urologist fixed the reflux, it was too late. Her kidneys had sustained so much damage that they eventually had to give out. And now, they were giving out.

“The fire is over,” Dr. Williams said, “and we’re dealing with the ashes now.” I recall the exact place where we were standing as he said this, the beeps and twitters of medical equipment in the PICU, the feeling that my head was floating above my body, the fidgeting of the residents who looked everywhere but at Olivia or me as I was told that my daughter was dying.

“We’re dealing with the ashes now.” That much destruction. I was glad that Olivia was mercifully asleep.

Not only were Olivia’s kidneys barely functioning, but her body made too much acid, too much salt, and too much urine due to nephrogenic diabetes insipidus, a rare complication of her medical condition. She was always on the road to dehydration, no matter how many fluids she drank. All they could do, he told us, was to keep pumping her full of IV fluids, which over-taxed her body and contributed to more renal failure. In short, every hospitalization hastened our child’s death, every time we rushed to the emergency room, the very treatment that alleviated the symptoms brought her one step closer to the grave.

Oh, dear God. Dear God in heaven, what? What? What? What?

I knew it. I knew before I ever entered this hospital, and now I really know it, and I don’t want it to be true.

What?

7 responses

  1. I’m sure it wasn’t easier hearing the words even though you already knew the words in your spirit. Or was it? No.

    What God? is right. Maybe that is an even bigger question to the “why” we always turn to. What are you doing? To me? Through me? What do intend to come of this? What am I to be for loving this beauty who is leaving me? What?

  2. Helen, you really are a poet, aren’t you?

    “helpless weariness”

    “death makes the living feel strangely hollow”

    And then your last two lines.

    I didn’t experience feeling that my faith didn’t see me through; I knew that it was the only thing that would get me through. But I’ve talked with many other people who felt exactly as you described after losing someone, and you’re correct: it was only much later that they saw they’d been sustained by their faith.

    What each of us experiences when we lose a loved one has such an impact that it should really come as no wonder that overcoming death is the major thrust of faith, should it?

    Jesus was so direct about confronting death.

  3. Eve, From my experience, I’d say the death of a loved one also creates confusion, sort of a helpless weariness that knows something must be done but often chooses the wrong thing to do. Family members want to comfort each other (and each one knows the others feelings are as raw as one’s own), but sometimes needs conflict. We fear hurting the ones who are left, as much as fear not doing the right thing for the one who died. Fear of hurting our loved ones can cause that paralysis you speak of. Death makes the living feel strangely hollow. And we are ashamed of that, because we think our faith should see us through. After all, what good is faith that doesn’t work when we need it? It’s is often much later than we find it did see us through.

  4. Charlotte, “paralysis and fear” are perfect words for describing it. Even now, when I recall these events to mind, I feel the same paralysis and fear.

    I know I’m changed, but I’m still surprised to discover in what ways. And I don’t mean to make it more than it was, either; people die every day and most people who die are attached to someone who loves and mourns them, I presume. People die in terrible ways, too, alone and afraid and not surrounded by love. I don’t think we are special or our grief is different and more in quantity or quality, or that it can be compared with anyone else’s. I just find that I was a different person before and after and it’s taken until now for me to unravel parts of it that are ready to be unraveled. I thought, since I write, that I’d try writing them out. So we’ll see. It’s a different way of handling this time of year in this particular year. But I can see that I’m at least communicating something clearly, because you hit the nail on the head. Paralysis and fear are right on.

  5. Heni, really? I didn’t know that. I find this interesting and moving, and I don’t think Steiner was alone in this belief. We were talking recently, my husband and me, about the Catholic (especially Irish Catholic) tradition of the wake, sitting with the body of the deceased until burial. And then there is the Jewish custom of praying the mourner’s Kaddish for one year after a death.

    I wrote letters to Olivia after she died, and talked with her often. If one believes that saints (believers who have gone on to the next world) can intercede for us, then why can’t we communicate with them? It makes sense. The idea makes me smile.

  6. Dear Eve, how hard that must have been for you to discover that what was keeping your daughter alive was also hastening her death. I can only imagine the agonising paralysis and fear you must have felt.

    How brave of you to face this in a public forum. Thank you for taking us into your confidence. I agree with Henitserk, that in some way, Olivia is gladdened by your writing of her.

  7. You are so strong, Eve, to have come through all of this so well. I know, sometimes you weren’t doing so well. But really, God knew you were strong enough.

    Rudolf Steiner believed that when we direct our attention to someone who has died, that person can perceive our attention in the spiritual world, and that it comforts them. Some anthroposophists “read to the dead,” especially in the first three days after death, when the person’s spirit is believed to still be partially attached to earthly existence and can often be confused and disturbed.

    So, these posts. as difficult as they must be to write, I believe send more love and comfort to Olivia each day. As I hope they do for you.

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