Her Dying Time | 1

Eight years ago today, my daughter was dying. We didn’t know when she would die or how long it would take, but we knew she was dying. The first week or so of August has been bittersweet since then, heralding the end of summer, the anniversary of one child’s adoption, the birthdays of our twins, and the death of our daughter. When I look back to what happened to us that summer of eight years ago, I’m still surprised that we made it through as an intact family. How did we endure so much? How did we manage to let our child go and have our hearts broken, and still continue to love God and one another, and to have hope?

Today, and every day this week, I think of my daughter. I miss her no less today than I did the day she died. That’s the funny thing about grief and loss, isn’t it? No matter how many times you hear, “Time heals all wounds,” you know it’s not true. The loss is always there; we just build wholeness around the void. We carry it with us, and we carry hope too, because we know we’ll see our child again. We know she’s still alive.

Even so, we miss her. As one friend said, Olivia was a fixture in our family. She was always there, always ready with her gorgeous smile or a good, silly joke.

ico33 by you. 

Our daughter was a fragile mystery born with multiple handicaps and challenges. We adopted her at age two years, and we were full of love, and terrified. I learned about hospitals, surgeries, shunts, braces, catheters, wheelchairs, orthotics, and how to lift a child paralyzed from the chest down. I learned that a person is not her body or her handicaps. I learned so many things, but most especially I learned how to live with fear, anxiety, terror, hope, and love, all at the same time.

 Olivia began to have acute medical problems and emergencies around the end of 1999. She would simply become lethargic and unresponsive. We’d go to the emergency room and they’d say nothing was wrong with her, but her blood work would show everything was wrong. She would spend a few days in PICU, become hydrated, and then leave a mystery. She had a urologist, a cardiologist, a neurologist, a pediatrician, an orthopedic surgeon. Nobody was quite sure what was wrong at first. So she was just a fragile mystery, a child who could just expire with few symptoms explaining why.

 I felt alone and afraid when I took her to the hospital emergency room. My child was black and I am white, and every single time, people assumed I was her foster mother, someone paid to care for this child. And love was evidently not part of the equation, to see the way they dealt with us. I felt persecuted there, even though for the most part the ER workers were just doing their jobs. I always wished they would do more than their jobs. I wished they would stop a moment and look at my child and see the fear on her face, and the fear on mine too, and would extend something besides mere medical care.

But they never did. So we went through many an ER visit, holding hands tightly, Olivia and me. During that time, a Bible verse sustained me, “Thou has made marvelous to me Thy love in a beseiged city.”

 ico33 by you.

 By the spring of 2000, Olivia was losing her joy and her spiritedness. Her teachers and our close friends noticed and commented. At school, some attributed her changed behavior to boredom or stubbornness, but it seemed to me that as her body wore down, her spirit knew it, and it wore down, too.

About every two months, we would have to go to the ER and our daughter would be admitted and put on IV therapy. She had too much acid in her urine-which is called acidosis-but it wasn’t clear why. Nobody thought, the first three times, to consult with a nephrologist, a doctor specializing in kidneys. But she kept getting worse, and I felt it was my job to keep her alive and I felt a lot of fear that I couldn’t do it, that nobody could tell me how to do it, or what was wrong.

Doing repeated emergency room visits and having repeated emergency hospitalizations was draining and horrifying, not at all like preparing for scheduled surgeries. Scheduled surgeries are planned, one has a routine; one works out a plan of care so that even in the midst of bodily suffering, there’s a map for the suffering and recovery. One has a compass, a bag full of Things To Do In A Hospital Room, and visitors. Terror comes and goes, but eventually it goes as a person recovers. Mending children are taken on wagon rides and visited by mimes and clowns and animal rescue people with cute little dogs and kittens. There is nothing cute or fun in the emergency room.

ico33 by you.

 On one of our visits to the emergency room, a trail of bright red blood led from the doors to the examination rooms. Every several inches, another bright red spot of blood marked a desperate trail to the place where everything stopped. They would not let us beyond the waiting room, even though we too were having an emergency, because someone’s son had just died. It was his blood leading across the floor to the people who saved and resuscitated or stood helplessly by as people died. They said, “the emergency room is closed! Their son just died,” and I remember asking with bewilderment, “the emergency room is closed? The emergency room is closed?” I wondered how it could be closed, when we were having an emergency and our daughter might die right then, too, if not treated.

At the time, I didn’t know that when a person dies, everything stops for a time. Parents had seen their child die while his blood still glistened on the emergency room floor. The emergency room stopped for their son that day, for them. I stopped, too, standing there and looking at the blood, my daughter in my arms.

18 responses

  1. Motherhood. This is what you are describing here. This is the part that so many fail to see, that motherhood is doing what you have to do so your child has all she needs for as long as she needs it, and for as many times as it takes to get it for her. And you two share something no one else can, even in her dying. You share that journey.

    And you pain about the ER visits is palpable. And it makes me furious. Furious even more as someone who is contemplating foster parenthood… how could anyone ASSUME that there was no love, even if you were her foster parent? Parent is parent, for however long… oh well, that really isn’t the issue. It is truly a sad that even those who are supposed to help care for us in crisis make assumptions that color the treatment received. I am so sorry that you had to experience that.

    And I am truly sorry for the loss of your daughter… it is a real loss to this world not having her here.

  2. David, what you said. Exactly what you said! I haven’t gotten around to writing about raising and losing a handicapped child yet, but there are so many misconceptions. Several friends (yes, friends) told us after Olivia died that she was “better off” and we were, too; some said we had other children to replace her with. One long-time friend said she should have been allowed to die.

    I have thoughts and opinions about all that, too, but what they boil down to is that all of us felt we had a rare opportunity to know and love a person who was a rarity in this world: full of joy. I really mean that. She just was. Yes, she had her flaws too; but over all the world was a different place seen through her eyes. And we were and remain grateful.

  3. This is horribly powerful, gut-wrenching even. No, I don’t know how you managed to get through all that, but you clearly did and it must be a tremendous tribute to the love you had for each other and for the rest of your family. I am so sorry for your loss.

  4. I only wanted to say that nothing you wrote was macabre. To me, it would be macabre to pretend Olivia hadn’t been a vibrant and beloved part of your life. Someone who is missed lives on in our memories and our stories.

    I think losing a child has to be the worst kind of pain. {{{{{{{{{{}}}}}}}}}}}

  5. I didn’t find the post to be macabre, either.

    I don’t think there’s a combination of words with sufficient finesse for what I want to say, so I will simply say it awkwardly and hope you know what I mean … it’s a beautiful and joyful thing that you miss Olivia. From what you’ve said, it would have been very easy for her to be overlooked and missed or terribly misunderstood and neglected during her brief time here in the world. But you saw her, you had her, you loved her, despite her frailty and physical challenges. It’s a wonderful thing that she was known, and that she is missed. People who were never beloved and never celebrated aren’t missed.

  6. Eve, thank you for sharing about Olivia. I hope it helps a little bit. I don’t think it’s macabre at all.

    I have always been grateful for emergency rooms and the people who work there. Sometimes they don’t live up to our expectations, but thank God for them. Unfortunately they are utilitarian, not nurturing.

  7. Eve, wow! Words fail. I think that you were able, in this post, to directly transfer your own heart to the heart of the reader. As I wrote, words fail to capture the impact that it made on me. I’m reeling–in a good way.

    I have a love-hate relationship with emergency rooms and hospitals in general. On the one hand, I have found them necessary and even comforting. On the other hand, there have been times when I have found the atmosphere cold and the people indifferent and even rude.

  8. She sounds like an old soul. I think I might break apart if something were to happen to Katie. I don’t know if I would be able to survive. She is my heart. I’m sorry Eve. Sending a hug.

  9. I feel sure, Eve, that Olivia couldn’t have had a more wonderful home than yours; and that she couldn’t have had a more loving mother than you.

    I hope this has given you at least some comfort in the years since Olivia passed away.

  10. Those visits to the ER never leave your mind, do they? Some of the things I saw there are permanantly etched in my memory. Ditto for the PICU. Clowns and child life specialists and artwork painted on the walls. It is the love between parent and child that exists in that space. Love is what makes it so hard. And no matter how much compassion you have for others, it is your own child for whom you fear. I’m grateful to have found you here. So sorry about your loss.

  11. Anyone who has lost someone will have to agree: “The loss is always there; we just build wholeness around the void.” You said that beautifully, Eve. I cannot even imagine the pain in losing one’s child.

  12. Reading your post has put a great deal into perspective for me. I feel so selfish every time I have complained about taking Kiko to emergency and thinking: “Why me? Why me?” when we are so lucky to have him. Every child is a gift from God. Your post was not macabre. I think you are amazing.

  13. Thank you guys. I just want to write about this because I feel sad every year at this time (well, every time I think about her, but that’s beside the point), and I haven’t written about this aspect of how I feel. I thought I’d share it. I’m not sure why; just thought I would.

    I hope this isn’t too macabre. But it’s real.

    And thank you, she was really a beautiful child and person. I’ve rarely met someone with as many gifts of personhood (if that’s a word).

  14. I sometimes don’t comment when you speak of Olivia, because I can’t imagine my words would make a bit of difference, because a part of me becomes a little frightened. I don’t want to even imagine such a loss.

    After seeing her pictures, and my God, she was beautiful, I feel I must at least tell you that. She was so beautiful.

  15. Pain
    And a woman spoke, saying, “Tell us of Pain.”
    And he said:
    Your pain is the breaking of the shell that encloses your understanding.
    Even as the stone of the fruit must break, that its heart may stand in the sun, so must you know pain.
    And could you keep your heart in wonder at the daily miracles of your life, your pain would not seem less wondrous than your joy;
    And you would accept the seasons of your heart, even as you have always accepted the seasons that pass over your fields.
    And you would watch with serenity through the winters of your grief.
    Much of your pain is self-chosen.
    It is the bitter potion by which the physician within you heals your sick self.
    Therefore trust the physician, and drink his remedy in silence and tranquility:
    For his hand, though heavy and hard, is guided by the tender hand of the Unseen,
    And the cup he brings, though it burn your lips, has been fashioned of the clay which the Potter has moistened with His own sacred tears.

    Khalil Gibran, The Prophet

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