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.
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.”
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.
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.
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