January 15, 2013 in Uncategorized
1 Why do you stand so far off, O LORD, *
and hide yourself in time of trouble?
On day ten of Erik’s stay in the hospital, a technician arrived with an EEG machine. The technician was quiet and somber. Careful hands covered my tiny son’s swollen scalp with electrodes. He was looking for a flicker of life.
I studied his face. His experience and training kept him level, but his soul was in his eyes. He tried not to look at my child. He kept his actions by-the-book as he moved efficiently around the tiny bed.
Once, he paused. For an instant, he looked directly into Erik’s face. His hands hovered like a hummingbird in front of a flower. A wave of pain crossed in front of his eyes. It was an instant, a passing shimmer. They had been talking. They were doing this test for me.
Another PICU mother made frequent stops to see us. Her own tiny daughter lay a few beds away, eyes rolling and darting, unable to focus or see. She was the recent recipient of a donor liver. Her mother, also named Erika, propped up the sagging portions of my faith. “He is going to be fine! Keep believing it! Keep praying!”
I did. Small successes like concentrated medications and unblocked catheters had lifted my insistent faith. This was a fight, just like it had been in the NICU. We had scary incidents then. We had apnea episodes. We had intestinal bleeding. Yet Erik had gone home. At four pounds. With no monitor. I hadn’t protested hard enough. That would not happen, again. I wouldn’t stop fighting until they speared me to the ground. They would have to spear me to the ground.
It was quiet around his bed during the test. Only the technician and I stood near him watching the jiggle of the EEG needle. I thought the jiggles were brainwaves. He told me they were only static. His tests showed nothing.
Dr. Joe was not there. Dr. Death was on duty. Soon, she began to circle. She was coming for my son.
I spoke to anyone and everyone I could. Was this test absolutely conclusive? Is there any way that it could be wrong?
There was enough doubt to cast a shadow. They would do one more test. Now, they would look for cerebral blood flow. This was the test of tests, the one test that, all on its own, could make the call. If there was no blood going to his brain, then there was no life.
Erik’s body fluttered on the bed. Shaken by the thump of the oscillator, he’d traveled a thousand miles. Part of me saw it clearly. How could he take anymore? Part of me was insistent and angry. He had been awake, responsive and crying before the sedation ten days ago. What happened? No one could tell me. Until they could tell me, I would hold on to the sound of his voice. He cried for me. “Mama, help me!” I was trying.
I went from arms to arms as they set up the test. There was dye and some kind of scan. I can’t clearly remember. Heather’s red-rimmed eyes held me and Erika pushed with her impossible enthusiasm. I plucked the fruits from their vines to nourish me as I held my vigil.
The nurse who had done the catheter was there. She hadn’t stopped crying. PICU patients had a dedicated nurse, so Erik had been her only responsibility for the past two days. She and I had bonded over fears, frustrations and successes. She was there. Her whole being was there. She wanted life for my son, and she fought for it.
I want to write it out like a novel. I want the details to be exactly right. In truth, many details are lost in the grinding jaws that took my son from me, one little piece at a time.
There was no blood flow to his brain. Suddenly, all the carts and monitors were rolling away. All the technicians were gone. My son lay, bathed in white, with only the oscillator to rock him to sleep.
I was in the process of breaking down. Someone had said all hope was gone. Someone told me I had nothing more to fight for. I didn’t understand it. No more pumping? No more pink meal slips that meant it was time to eat? No more reading books? No more changing gauze? No more soft, warm cheeks to rub my cheeks against? No more twinkling eyes that knew more than such a small babe should? What were you saying? What were you people saying??
Fred appeared. I was gripping the foot of Erik’s bed and the back of my stool. When I felt him, I let go.
“THIS IS RIDICULOUS!!!” I cried. My voice came out in a blast, punctuated by helpless ire. My fingers dug into the furniture as I cried out, again, “THIS IS RIDICULOUS! THIS IS RIDICULOUS!”
I cried out those words over and over. I lifted myself from the ground, holding on to the bed and chair. My feet paddled the air, kicking down nothing. “THIS IS RIDICULOUS!!!!!!!”
The soft voice of Fred scooped me up, “Yes!” he answered. “It is! It is ridiculous! It is!” It was such a relief. No talk of heaven, nor angels nor wills; Fred echoed my own heart. It was ridiculous.
Suddenly, the staff was in motion. With practiced efficiency, they organized a death. Erik was being taken from me. I couldn’t protest, anymore.
The Death Chair was rolled in. The well-worn armchair was stained in unseen blood. How many children had breathed their last in that chair? They would thrust me into it, and Erik would die in my arms.
I screamed when I saw it. “O, hear it comes!” I cried. “O, God! How can this be!!? What the hell is happening!? This is RIDICULOUS! This can’t be real!”
I wanted someone to tell me that it was not real. I wanted them to stop this ugly series of motions. But they were practiced; so they moved on.
In the cloud of my ending, Dr. Joe appeared. He was off-duty. They called him when the test results for Erik were confirmed. He came straight to me, without stopping. His eyes were red from tears.
His arms were around me. I couldn’t even cry as much as I wanted to cry. If I really fell on the floor, then this was real. What was I going to do? The Sculpture’s chisel felled blow after blow. My mind went, “break, break, break…” Things that once were, fell away.
Dr. Joe curled his long frame around me. Down at my level, he whispered in my ear, “My wife and I lost four before we had our fifth. We lost four before we had our fifth. I want you to listen to me: We lost four before we had our fifth.”
In the hotbed of hell, something happened. Though it wouldn’t connect for a long time later, Dr. Joe’s words had been very important. His arms pressed me in sincerity. As many deaths as he’d seen, he grieved with me; and his grief was real.
I didn’t go for the rituals. I was in the depths of horror. I wasn’t going to pretend it was any other way. Instead, I looked directly at individuals, “This is unspeakable!” I would say. How could I fluff the last moments of my son’s life? “This is unspeakable!!”
I made one important request: Don’t Let Dr. Death Near Me, or My Son.
I had to accept it at least some of their procedures. It was this; or never hold my child, again. These were the last mama and baby moments we would ever have. I had been terminated, let go. It was over.
They disconnected Erik from all his machines and brought him to me. His heart was beating. I wrapped my arms around my beautiful son, my reason for living. I let his tiny head rest on my hand so I could study his face.
He was gone. These swollen features were not my spirited child. I said good-bye to my handful of dreams, my son, dweller in the ether. At the same time, I rejected it. My mind broke, again.
Ten days ago, Erik had weighed five pounds. Now, he weighed about 15. As I cradled his head, I felt it shape itself around my hand. I wanted to scream. “Break…break…break…”, I kept on changed.
Dr. Death came from around the corner. With sufficient ceremony, she victoriously announced his death. From my underground cage, I clawed at my ceiling. Heavy earth rained down within.
Suddenly, blood pooled in his mouth. It welled up, and ran down his cheek. I dabbed with something I had in my hand as I watched it continue to flow. His blood vessels were rupturing. There was no miracle that would remake this child.
I dabbed and dabbed and dabbed. His head on my hand grew more and more visceral as I reached forward with all that I was. Blood began to run from his ears, and I couldn’t keep up. His little body kept bleeding, and suddenly it was gone.
I was in a room with a lot of chairs. I wouldn’t sit in the chairs. I wasn’t sure why I was waiting or what was going on. Two members of my family sat above me while I writhed around on the floor. I was screaming, and then I was kicking. I remember wanting to bite myself, but not wanting to go to the psych ward. Get away from these people. Then I would let go.
There had been a social worker in the PICU. I hated her. She came at me with a twisty-head style that broke off at the waist as she leaned in to my sphere. It wasn’t genuine. I could feel it.
The door opened to the room, and she was there. She had a bag in her hands. Her head twisted towards me like a chameleon. She pressed something into my hand.
“We cut off some of his hair for you.” Her mouth moved in front of me like ghostly “o”s. Eyes, without meaning, drifted above.
I looked into my hand and saw the golden sparkles. I screamed. I flailed like an animal caught in a trap. I kicked tables, chairs, boxes, and bags of death supplies gathered from my son. “Get away!” I screamed, “Get away!”
My family absorbed the auspicious duty of after death talks. They were naturals. As for me, I ran. I moved my feet faster and faster as their voices faded away. I had to get away from the social worker. If she saw into me, they would lock me away.
On the curb, at the exit, my two family members met me. They were ready to cling and cry for hours. I wouldn’t do it. Just like those practiced rituals above, I was out. I was gross and out of place. I didn’t want their company, now. I wanted their company when my son was premature and newly home. I wanted their support when it could have saved his life. Now, I wanted to get away.
“I’m sorry,” I told them. “I can’t grieve with you. I have to go. I’m sorry. I will see you later. I have to go.”
In the Pittsburgh winter, it had started to snow. About three-inches lay on the ground. I parked near a state store a few blocks away and went in. I left with two pints of whiskey.
“My son just died,” I told the clerk. Not much about the clerk seemed to change. “His brother died a few months ago.” Our transaction was over.
I sat out front of the family house in my Lincoln Towncar. It had been a gift from my ex’s grandparents after my ex destroyed my car. I had escaped from him in it to protect my sons. Today, both of my sons were gone.
I made crazy promises to myself. Give me back my son. We’ll walk away on foot, leave the car, leave everyone we know. We can make it. Give us a chance. Let us show you how we can make it, Lord. Give me back at least one.
I drank one bottle and half of another before I went in. I had the phone number of a PICU nurse. We talked. I heard a voice that sounded like mine as I died and I died and I died, again. I had traded all I had for motherhood. There was nothing left.
1“Mortals, born of woman,
are of few days and full of trouble.