of love and terror
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. When I look back on what happened to us that summer of eight years ago, I’m surprised we made it through as a couple, a family. How did we endure so much? How did we manage to let our child go, have our hearts shattered, and continue to love God and one another.
How did we still 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 bereavement, 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 simply build around the void. We carry our lost person and the void they’ve left with us always. We hope to see her again someday.
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.
A FRAGILE MYSTERY
Olivia was a fragile mystery born with Myelomeningocele and associated multiple handicaps. We adopted her when she was two years old. We were full of love and terror. Though ignorant of such experiences and things beforehand, 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 their body nor their disabilities. I learned a great 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 experience acute medical emergencies around the end of 1999. They would initially present through an uncharacteristic unresponsive lethargy, for Olivia was a lively, vibrant little girl. The first time she had an emergency, the school sent her to the hospital by ambulance, an unprecedented and shocking event. She was dehydrated, the emergency room doctors said–a puzzle, because she had been eating and drinking normally.
These incidents recurred every few months. I would take her to the E.R., but her vitals would be normal. Healthcare professionals who didn’t know her often mistook her lethargy and unresponsiveness for manifestations of physical and developmental disabilities. In a variety of situations, a wheelchair is as much a social barrier as it is a liberator, for people see the disability first and overlook the person.
“Her vitals are good,” they’d say. “Nothing seems out of the ordinary,” another would reassure.
Just wait ’til you see the blood work, I’d think.
Her blood work would come back and show everything was wrong with our child. The room would erupt with activity and bustle. Up we’d be sent to PICU, where with each admission, veins were more and more difficult to find. Olivia would spend a few days in the PICU, get hydrated, and return home an unsolved mystery.
HOLDING HANDS IN THE E.R.
Olivia had a urologist, a cardiologist, a neurologist, a pediatrician, and an orthopedic surgeon, but none could definitively say what was wrong or how to fix it. She was a riddle, a child who might expire during an emergency, but probably would not. A cluster of symptoms pointed to recurrent dehydration.
Each emergency room visit was a physical ordeal for Olivia, and an emotional one for both of us. Olivia was Black, and I’m white, so each time we went in, the emergency room professionals assumed I was her foster mother, someone paid to care. Hospital workers were initially hostile and rude to me, assuming I was giving Olivia no more care than a crippled, Black foster kid deserved, and was quite possibly the cause of her crisis.
I felt persecuted in the Emergency Department even though, for the most part, the physicians, nurses, and technicians were just doing their jobs. I wanted them to do more than their jobs. I wished every time we were there that just one person would stop a moment, look at my child, and see the fear on her face and mine, too, and extend compassion beyond mere medical care.
They never did, not once.
We went through each ER visit holding hands, Olivia and me. A Bible verse that comforted and sustained me, helping me remain a place of calm, comfort, and certainty for my child was Psalm 31:21, “Blessed be the Lord, for he has shown His marvelous faithfulness to me in a besieged city.”
FADING
By the spring of 2000, the joy and spiritedness characteristic of Olivia became retrograde planets in her astral chart. She was fading. Her teachers and close friends noticed and commented. At school, aides attributed her changed behavior to boredom, and even stubbornness, but it seemed to me that as her body wore down, her spirit wore down, too.
About every two months, we’d return to the ER, 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. Each time she was hospitalized, she was seen by her usual team of hospital affiliated specialists. Each time she’d be released after a few days of treatment and IV therapy.
Repeated ER visits and emergency hospitalizations drained my husband and me, and obviously drained poor Olivia. Events unfolded like tense scenes in a horror film: You never knew where the killer lurked, when they’d lunge, when the victim would die.
Emergency department visits are nothing like living with chronic medical conditions and preparing for scheduled surgeries. Scheduled surgeries are planned in advance. One works out a plan of care so that, even in the midst of bodily suffering, there’s a map to recovery. There’s a compass, a routine to develop, a bag full of Things To Do In A Hospital Room, a schedule of loved ones to stay with the patient, and Visitors.
Fear and anxiety come and go with scheduled hospitalizations, but dwindle as a person recovers. At the Children’s Hospital, children on the mend are taken on wagon rides through the unit and are visited by mimes and clowns, animal rescue people bringing cute little dogs and kittens, and celebrities.
There’s nothing cute or fun in the emergency room.
THE EMERGENCY ROOM IS CLOSED
On one of our visits to the ER, a trail of bright red blood led from the entrance toward the examination rooms. Every several inches, another bright red spot of blood marked a desperate trail to the place where everything stopped. They wouldn’t let anyone beyond the entrance, because someone’s son had just died. It was his blood leading across the floor to the professionals standing by helplessly. They were still standing around the intake desk, helpless. A nurse in blood-spattered blue scrubs shook her head rhythmically, arms crossed, unable to focus, stunned.
I stood in the vestibule with Olivia limp in my arms, also helpless, also unable to focus, also stunned. I must have looked incapable of movement, for another woman in scrubs leveled her gaze at me and yawped, “The emergency room is closed. Closed. Their son just died.”
The emergency room is closed. The emergency room is closed. It’s closed,
Her words echoed in my head. I couldn’t make sense of them.
How could the ER be closed? We were having an emergency.
Would Olivia die in this emergency? Would she die right then?
Would she die?
“The emergency room is closed?” I asked with bewilderment.
“It’s closed?”
Yes, Scrubs emphatically shook her head. Yes. Closed.
Later, the hospitalist explained that when a person dies in the ER, 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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