Reflections on Losing My Child, Part 2: Trauma

Distorted emergency vehicle lights through a rainy windshield.

the trauma of emergencies

The year before our daughter died, we had spent a lot of time in hospitals. Our son, who had undergone major surgery, returned home needing a great deal of medical care. Our new baby daughter had been hospitalized with pneumonia. Our twin girls had nearly drowned; my daughter-in-law nearly bled to death after childbirth, and my husband had been electrocuted and blown off a two-story scaffold on a job. Olivia had been hospitalized every few months all year.

We spelled “trauma” with a capital T that year.

I greeted the new year with hope and a stash of Y2K survival provisions in case the alarmists were correct, and the economy came crashing down around our heads. But what we feared might happen that year was nothing compared with what actually did happen during our own private Y2K crisis.

Olivia ended 1999 with a stay in PICU after going into shock due to dehydration. On that ER trip, true to form, residents who had not met us before accused me of withholding water from my poor little Black foster child. I explained on every visit that Olivia was not a foster child, but my own daughter, and that she had been seen regularly at several specialty clinics at that very hospital for more than a decade due to a complex medical history and condition.

The first several times Olivia had been hospitalized, she was seen by her usual hospital affiliated specialists, including the urologist who had faithfully treated and followed her for years for bladder issues and incontinence arising from Myelomeningocele. Besides her urologist, she was seen regularly by the specialty clinic pediatrician, a cardiologist, a neurologist, an orthotist, and an orthopedic surgeon. With this hospitalization, a nephrologist would join Team Olivia.
She had so many people rooting for her.

Even so, the ongoing emergencies were traumas, brutal assaults on our daughter’s well-being that destroyed her trust in the world’s safety, and robbed her of her characteristic joy.

time to say GOODBYE

The commute to and from the hospital was grueling. I missed My Sweetie and our other children when with Olivia, and Olivia when I was with them. Mister and I divided our time between hospital and home so that Olivia was never without a parent. By the fourth morning after this hospitalization, I once more wearily pulled into the parking garage across from the hospital. As I placed a parking garage permit on my dashboard and found a parking space, the Andrea Bocelli CD a friend had given me for Christmas played the next song.

Strings introduced the expressive melody, with soprano Sarah Brightman eloquently rendering its opening stanzas in Italian. Every thoughtful, measured pause led to another unbearably sweet phrase sung with longing and sorrow. Transitioning from Italian to English, Brightman sang the first English words of the title song,
“Time to say goodbye.”

That’s when I knew. I knew in that moment, in the core of my being, that Olivia was dying. We were on a journey of transition and farewell. Olivia would die, and this was her time of goodbyes.

It was time to say goodbye.

I sat in my car in the parking garage of the hospital that had become so familiar, and cried and cried.

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.

the fire is over

Rounds were in progress when I entered the PICU. Olivia’s new nephrologist, Dr. Williams, and several residents surrounded her bed. As I entered the room, Dr. Williams turned a kindly but serious face toward me. With sorrowful eyes, he laid a gentle hand on my elbow, saying, “Let’s go outside, Mama.”

Our covey went out to the centrally-located nursing desk. Residents fiddled with their clipboards and pagers, looking everywhere but at me. Dr. Williams gave me a level look assessing my demeanor, then glanced at his pager.

“I’ve asked Dr. Bradley and Dr. Harriet to join us,” he explained, “and they’re on their way up.” We all fell silent. Elevator cars whirred on their cables. Momentarily, elevator doors opened and Olivia’s urologist and pediatrician joined us.

After exchanging brief greetings, we turned to Dr. Williams expectantly. Nobody had been able to tell us what, exactly, was wrong with our 11-year-old daughter, or what could be done about it. Nodding his head affirmatively in response to some internal dialogue, Williams began to talk. Before we had even adopted Olivia, he said, reflux of urine into her kidneys had destroyed the entire renal medulla–the core–of her kidneys. By the time we adopted her and Dr. Bradley had fixed the reflux, it was too late. In the womb, during the neonatal period, and for the first two years of her life, her kidneys were slowly being destroyed by Vesicoureteral Reflux (VUR).

Her kidneys had sustained so much damage, he explained, that they eventually had to give out–and now, they were giving out.

“The fire is over,” Williams said, “and we’re dealing with the ashes now.” I recall the exact place we were standing as he said this, surrounded by the beeps, chirps, and hisses of medical equipment; the sensation that my head was floating above my body but my feet couldn’t find solid ground; the fidgeting of the residents who looked everywhere but at me as I was told that my daughter was dying.

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

Dr. Bradley nodded grimly and explained that not only were Olivia’s kidneys barely functioning, but her body was making too much acid, too much salt, and too much urine due to Nephrogenic Diabetes Insipidus (NDI), 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 me, was to keep pumping her full of IV fluids, which over-taxed her body and contributed to additional renal damage and failure. In short, every hospitalization hastened our child’s death. Every time we rushed to the emergency room, the very treatment that temporarily alleviated her symptoms also brought her one step closer to the grave. She wasn’t a candidate for a kidney transplant.

There was no cure and nothing more to be done for Olivia.

Oh, dear God. Dear God in heaven.

I had realized it before I had entered the hospital that day, and now understood with certainty that Olivia was dying.

Olivia had been dying all this time.

reflections on losing my child

Eve

,

7 responses to “Reflections on Losing My Child, Part 2: Trauma”

  1. Tammy Avatar
    Tammy

    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?

    Reply
  2. Eve Avatar
    Eve

    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.

    Reply
  3. helenl Avatar
    helenl

    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.

    Reply
  4. Eve Avatar
    Eve

    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.

    Reply
  5. Eve Avatar
    Eve

    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.

    Reply
  6. henitsirk Avatar
    henitsirk

    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.

    Reply
  7. Charlotte Avatar
    Charlotte

    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.

    Reply

Leave a Reply

Discover more from The Third Eve

Subscribe now to keep reading and get access to the full archive.

Continue reading