Life After Death

January 25, 2013 in Uncategorized

Consolation

They call it
this thin thing,
transparent as lacquer.
Its ghost appears,
hoarse scratches looped
on colored paper,
Restrained platitudes,
shaken out and reused.

Loss, Loss, Sorry
for you Loss.

They talk about time.
They talk as if they’ve done it.
They talk as if life burst
red from their uterus
has gone cold in their arms.
They talk
as if their throats
have split with howls
as grief fingers scrabbled
at insatiable ground.

Consolation,
They call it.
Bulged eyes dry with fear

We’re praying for you.

The subtext:

We pray we’re not you.

Wet hands stretch out,
impotent filmy palms,
a plea for absolution.
The hands clutch tighter
to their children
as they run.

(Words,
as they run,
roll back like waves)

Loss, Loss, Sorry
for you Loss.

—Erika Quiroz

°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°

After Erik died, I took to the bed. I perched my computer in front of me on a portable computer table, and lay down. Through bootleg sites, I found movie after movie. I played them night and day. The horror from within was too much. I wanted to be go-go-gone. Deep reality scratched from inside my heart. When it broke through, I lost control.

Mostly, I lay on the bed. Rarely, I wanted to talk, needed to talk; I loathed to talk. I didn’t want to hear my own words exiting my mouth. I wanted to talk about caring for babies. I did not want to talk about grief. I told my sister that I felt like someone who had been horribly burned. The sensations in my mind and body were too much, and I had no medicine to take away this pain.

“I don’t want this identity!” I cried. For the rest of my life, I would have it. Now, I am “the one”. “O, she’s the one who…”. Two of my children, my only living children at the time, had died. I would be whispered about behind hands for the rest of my life. My real, warm, living babes had been replaced by a tag. It hung around my neck like a noose.

In early grief, I couldn’t control my body. I thrashed against the insistent rope with periodic, almost seizure-like spasms. Lying on the bed, I was gripped by near convulsions as the blackness of my situation broke through, over and over. Crazy, out-of-my-mind with pain, I would twist on my back and cry out, kicking walls and furniture, ache trumpeting with abandon. It was like being infected by a parasite, eating me from within.

I tried to be around people; but found that I couldn’t. On one of my first outings, I slumped in a chair in my aunt’s living room. Two of her neighbors were visiting. One of them declared, “I guess they just weren’t meant to be!”  A convulsion rumbled up from within. I stopped going out.

“You have an angel on each shoulder now!” others had proclaimed. “It was God’s will,” still others told me. Visions of angels and God deformed themselves into grotesque visions. Declarations of, “They are with God, now!” did not comfort me. God, with his uncountable collection of dead children, seemed ravenous and perverse. My Comforter and Teacher became a sickening, black hole lined with fearsome rows of bloody teeth. Behind me was oblivion, and in front an insatiable, sadistic creator. There was nowhere to turn.

I fell down and down and down and down. I heard voices in the darkness, snags that caught my shroud as I fell. Warm voices and hands left bruises and burns as the center of the earth demanded me. When I walked, I often fell. Convulsions would take me on my way to the bathroom leaving me writhing and kicking out in the hall. My world was black and nearly airless. My body was rejecting life.

Back in the PICU, when Erik was gone, I had stumbled into the arms of my friend, Heather. Her face broke with grief. “You are an amazing mother, Erika. I don’t know how and I don’t know when, but you will be a mother again. I know it. I know it.”

Her words rested deep inside of me. Near them lay the words of Dr. Joe. “We lost four before we had our fifth. Remember, we lost four before we had our fifth.”

I was single. I was fresh from horrific abuse. I did not want a man. I wanted a baby, my baby, my babies, my soft warm, endlessly needful things. My loneliness ate at my living flesh. Erik was everywhere. In my grief, I thought him lost amongst the blankets. In the dark of night, I was sure he was there.

When he was with me, I never turned off the light and never used blankets. Now, the lights still burned. My mind would turn on itself. He is here. He is lost in the blankets. By the soft lamp light I would spring up and begin to scratch. Where where where was my child? He was suffocating! I tore the bed apart looking for him. In the mess of blankets, I was alone.

Where was my child? His car seat sat empty in the extra room. The blankets he’d last used were in it. He was in there. I saw the blankets and I saw he was lost. I fell, again and again, on my knees beside it. My hungry hands dug for my baby. My search ended with a convulsion on the floor. No Erik.

In every corner and forgotten space, I saw him. My son. If I found him before I’d grieved too long, he could come back. This is magical thinking. I have learned, from being friends with other grieving parents, that this is normal. There is a period of time where the grieving parent feels that the child can be resurrected without disturbing the fabric of the universe. I prayed to a God that was becoming a fiction. Give him back. Give him back.

I made promises. Give him back and we will disappear. I will never see or speak to any of the people I know, again. No one has to know that you gave me back my baby. Give him back. We will live to serve you. We will disappear.

“We lost four before we had our fifth,” Dr. Joe had whispered. When he said it, he gripped me tight. It was not a doctor grip; it was a grief grip. It was a rallying cry. “Remember,” he told me.

My mind, insane with grief, began to reach.

°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°°

Nights

this used to be our time
this very very late time
this middle of the night time
the hours before morning time
my fingers on your body time
excited little spiders
happy in their web

this used to be our time
whispers over diapers time
my face in your hair time
can’t believe your mine time
warm-warm-warm-warm mouth time
drawn out of my breast.

now this time is my time
can’t believe your gone time
how can I go on time
I think I’ve lost my mind time
where did I go wrong time
can’t we turn back time time
come and take me too time
can’t believe it’s true time
now there’s too much time time
I am just a ghost time
in an empty bed

—–Erika Quiroz

Erik Never Comes Home

January 15, 2013 in Uncategorized

Psalm 10

  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.

 

Erik at home. I miss you, sweet baby!!

Erik at home. I miss you, sweet baby!!

 Job 14

1“Mortals, born of woman,
    are of few days and full of trouble.

 

Erik Goes Back, Part 5

January 14, 2013 in Uncategorized

Isaiah 40:21-24

21-24 Have you not been paying attention?
    Have you not been listening?
Haven’t you heard these stories all your life?
    Don’t you understand the foundation of all things?
God sits high above the round ball of earth.
    The people look like mere ants.
He stretches out the skies like a canvas—
    yes, like a tent canvas to live under.
He ignores what all the princes say and do.
    The rulers of the earth count for nothing.
Princes and rulers don’t amount to much.
    Like seeds barely rooted, just sprouted,
They shrivel when God blows on them.
    Like flecks of chaff, they’re gone with the wind.

Erik at home

Erik at home, in a dream

Erik hadn’t moved in nine days. His soft, pink skin and delicate features were grotesquely puffed. His tiny, five pound body held an extra ten pounds of fluid. Beneath it, I placed stack after stack of new gauze. Yellow lymph rose in beads like sweat, and then rolled down his quiet sides. Motion and sound came from the rhythm of the oscillator.

I lifted his bloated limbs like a sacrament. Every cell of my body cried, “Mother” as I changed his lymph-soaked socks for new ones. I studied each toe. I created pictures meant to last for a lifetime. Every precious detail of his body was carved into my mind. In each slice of the carving, something else was cut away.

On one little hand one was little finger. Near the nail of that finger was a tiny slit. On the last day of our life at home, I had accidentally nipped him with the nail clippers. In the PICU, the wound slowly began to heal. I studied it. My grand error. How many more invisible ones had led to this? In how many ways had I failed?

As the fluid in is body increased, a nurse warned me of the consequences. Pressure on the blood vessels would compromise blood supply to his organs. The fluid from 16 vials dripped day and night. The row of vials might as well have been gallon jugs. It was too much.

A day or so before, one doctor had come to a brilliant conclusion: give him concentrated doses of medication to decrease the amount of fluid he was receiving. As relieved as I was, it made me angry. Why hadn’t this been done from the beginning? Why had he been allowed to swell like this when it could have been minimized? Now was not the time to fight that fight. Everything was for Erik.

Piles of books lay around the bed. My life had become a rhythm of singing, talking, reading, eating, and praying–speckled lightly with sleep. I was a student of the nurses on rotation. I watched them closely as they cared for my son. Studying eyes as I asked my questions, I hoped for evidence to support my faith. Sometimes, I found it. It was enough.

Ministers had been to see me. One especially had reached my heart. He didn’t try to make poetry out of my disgusting situation. Fred was real, without flourish. He gave me the feeling that he was on my side, but never the feeling that he understood my feelings better than I. His medicines were sincerity, compassion and respect. I quieted under their effects.

Erik had been re-warmed; but he did not wake up. An optimistic Dr. Joe hadn’t crumbled. He told me that my child was very sick, but he didn’t throw him away. His kind eyes fell on Erik from his face high above my head. I stood close to him, listening to each word, often with my arms around him. He greeted me with hugs each time, more good medicine. I trusted him, and I believed him. We weren’t ready to close the door.

The other prominent doctor had continued in her way. I snarled bitterly at her back each time she left. “She wants to plan his funeral,” I would say. She casually assessed all efforts as futile. For her, Erik was already dead. Not for me.

Don’t think I was free of doubt. When I held my cheek close to his, I let my heart secretly fall open. What did I feel? Could I feel him? Did I feel a presence like the one I felt from him as he slept near my side? Was he there?

“Erik,” I whispered. “Are you there?” I waited for the movie-miracle-finger-twitch, the slight bend of a toe. I waited for an eye to move under a lid. There was nothing. In his stillness, I felt alone. But he was very sick. Maybe he was sleeping.

Around the edges of my faith, I began to consider life with no living children. My mind cracked, cracked, and cracked, again. At the foot of his bed hung Jeremiah 29:11, written out for us by our friend, Heather Allen,

11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

I wouldn’t let go of that scripture. I said it over and over, like an incantation. I lay hands on my son. I rested them gently on his tired body as I prayed and prayed and prayed. I channeled healing. I channeled love. I channeled my dreams of our future together. I saw him as a man, arm around me, kissing the top of my head.

On that vision, I broke. That vision had once been of two tall boys, not one. Now, around my daredevil faith, I sometimes saw even none. I broke, and broke, and broke.

After he had been warmed, his pupils were examined. It was hard to get his lids to separate because of the fluid. His eyes bulged like a frog’s, his tiny mouth almost turned inside out with swelling. They found his pupils. They were still.

This was not conclusive. The medical staff said more tests could be done. “Do them all,” I said. I imagined my tiny son, locked inside. I imagined him reaching for me but unable to raise his hand. I heard the voice of his heart, “Don’t leave me. Don’t abandon me.” Only when every question– every single question–was answered “no”, would I give up, give in.

On day nine, there was a sharp drop in output from his kidneys. Staff concluded that his organs were shutting down. “No,” I said. I don’t remember the details now, but immersed as I was in his medical condition, I had fair recent for crying “No”.

One nurse supported me, and through her excellent medicine, was found to be right. As a last ditch measure, she changed his catheter. Having been catheterized for so many days had traumatized his body. Pressure from fluid caused immeasurable problems.

I was breathless as I waited for her to remove the catheter. So was she. I watched the emotional energy in her steady hands, her most sincere love evident in her care. My being was one with hers as she acted, two people united in cause and prayer.

An energy shifted in my brain as I watched her. My warm, wiggling baby was on the table. He hadn’t moved for days. I did not recognize his body. This was the last fight for his life.

She inserted a new catheter and blood-tinged urine gushed. She turned to me, face bright with a holy miracle, and cried, “The catheter was blocked!”

Our triumph took the day. I watched this woman advocate for me, and feel with me, for all of the last hours of Erik’s life. I wish I knew her name so I could thank her, personally. She treated me with such compassion and dignity. Remembering her, I’m moved to tears.

With his pupils still, they scheduled an EEG. My teeth ground themselves to powder. Dr. Death was going to eat her words and I was going to live at his side for as long as it took him to recover. We’d done it this long. I would follow it on. In a way, I couldn’t wait.

 

 

 

Erik Goes Back, Part 4

January 10, 2013 in Uncategorized

John 5

One who was there had been an invalid for thirty-eight years. When Jesus saw him lying there and learned that he had been in this condition for a long time, he asked him, “Do you want to get well?”

“Sir,” the invalid replied, “I have no one to help me into the pool when the water is stirred. While I am trying to get in, someone else goes down ahead of me.”

Then Jesus said to him, “Get up! Pick up your mat and walk.” At once the man was cured; he picked up his mat and walked.

Erik and Mama, home at last

Erik’s departure from the NICU had been like a dream. For months I waited for him outside of his plastic shell. Snaking arms through the portals of his den, I touched him. Downy hair on his face turned from white to gold, catching light like strands of spider’s silk. I studied the areas around the tape that held in his oxygen and feeding tubes, watchful for damage to his delicate skin. “Give me,” said my hunger, “Give me what is mine.”

As we pulled away from the hospital, I hovered above his car seat. Finally, we would be alone. Terrified to be without a monitor, I studied each breath. I would do this for as long as he lived.

That one Christmas, Erik was home. I felt royal. I carried my son like he was the Ark of the Covenant. I ferried a miracle, a survivor, a font of direction. He was both tragic and profound. Nothing else could catch my interest. My breath had no starts or stops. It was a circle, a constant flow, a round of life fed by the magic in his face.

He was tiny and he was intense. He had a look  that suggested great amusement. In him I sensed a wisdom, and a beguiling view of the world. He was beyond me already, but he loved me. I lived to serve.

Still, I sensed it. His tie to me was light. Something about him was like a puff of smoke, like a scent on the wind. He was the suggestion of a child, a spirit in human form. As he moved in my arms and at my breast, he reached into me deeply. With his tiny hands he smoothed out my knots, broke off old ties, and remade me. I surrendered to his work.

That Christmas, there was a small family gathering. Constantly Nursing Erik was on my lap. Some moved in the kitchen while a few sat uncomfortably across the room. Nursing Erik made them uncomfortable. My frequently exposed breast dampened the holiday cheer.

When dinner was served, Erik was nursing. I let the family know we would be done soon and hoped that they could give us ten minutes to get to the table. By the time we got there, the meal was done. I sat down to Erik’s only Christmas dinner at home as the dishes were being cleared.

My feelings were hurt, but I stepped back to regroup. I carried the Ark of the Covenant, the creator of dreams. In the end, the prize was mine. Christmas dinner alone could be endured. I licked my wounds in Erik’s soft glow and kept my eyes down.

Down. I looked down at my son that morning of the 5th and saw his face was blue. “You’ll know!” the staffed at Allegheny General had laughed. “If he stops breathing, you’ll know.”  He had. I knew.

When he was in the NICU he’d stopped breathing several times. Monitors alerted nurses instantly and a slight rub was all that was needed to start his breathing. A monitor lets you know right away so you can act. I was asleep. I was alone. There was no one and nothing on watch over this fragile infant. When you think about it, it is almost insane. Why no monitor? What do you lose by giving it?

Now, Christmas dinner sat in me bitterly. Why couldn’t they have waited ten minutes to eat? Why were Erik and I alone that morning? I called on God to show me compassion and generosity, and He did. Along the way, however, I felt the bitter mire of disappointment, betrayal, and heart-ache. It added to the sadness and set me adrift.

I remember the feeling of my footfalls. Well polished halls punched the bottoms of my heels sending echoes into my core. I thoroughly mapped the inside of my shell with the ricochet of my own inquisitions. I had ferocious faith. No one could stop me. I felt like a carnivore with nothing to hunt, hungry and on alert. This was a game to outfox death. It could not have another one of my children.

I made my life a prayer. Each step, each chew, each motion of my body had my attention focused on God. I won’t say that I did it well, only that I did it with a feeling of panicked urgency that makes me sick to recall. We are so helpless and this world so brutal. I acted with power. I acted as if.

Erik had continued to swell. He was now easily twice his normal size. I began to see yellow droplets on his skin. I spoke to one of his nurses, “What is this?” I asked. “Lymph,” she told me. He was so full of fluid that it was leaking out through his skin.

They had begun to change his bedding more frequently because of the slow drip of lymph. Gauze pads caught it where it pooled under his extremities. When I noticed them doing this, I took over that job. It made me feel like I was still parenting him. Instead of nursing, I pumped. Instead of holding him, I replaced the damp gauze with dry ones.

Life took on a rhythm. We pumped, we ate, we watched, we prayed and we slept. I say “we” because I watched my friend, Heather, do it beside me. Her presence in my life was the warmth I needed to live each day. As I stood next to my still son, I could feel Heather at my back. Without touching, she squeezed my hand. We went on.

It was suggested that a revived Erik would face major challenges. I still said, “No way.” It was still not written on paper that he had been responsive, crying and fighting the vent back at Wetzel County Hospital. To me, that was a sticking point. Sure, maybe they were right. But from my experience, there was a chance that they weren’t.

I went to the hospital library and checked out books. I read to him and sang to him for hours. I could feel the energy burning, something pushing from behind. Jostled and frightened, I dug in my heels. My son was innocent. He went against the odds. I would not give up.

erik at five pounds, up 1 since leaving the NICU

Where there were obstacles, I sought to smash them. I would smash them with prayer. I wore faith like a garment. Each moment I took away from Erik I spent on the phone feeding prayer chains and circles across the country. Countless prayers went out from places unknown. We were blanketed with prayer.

In the back of my heart there was another thought. Losing Arthur was “punishment enough”, if I was being punished. Sometimes, it’s hard to know. Was this a thorough ass-kicking for my list of  unrighted wrongs? Surely, losing one child was enough. Losing both of my children was unthinkable. What then? How could I live? I wouldn’t think about it. I would keep my vigil, and I would pray.

Each night, I stayed with Erik well past bedtime. In the cool, low lights of nighttime, I dabbed his skin. I watched for changes. I waited for tests, and for answers and for hope. He had woken up in West Virginia. He was crying, then. He was trying to breathe. He responded to me. What had happened? Where was he now?

“Come back,” I whispered at each night’s good-byes. “I love you, Erik. Mama needs you. Come back.”

 

 

 

Erik Goes Back, Part 3

January 7, 2013 in Uncategorized

Psalm 103

  He forgives all your sins *
and heals all your infirmities;
  He redeems your life from the grave *
and crowns you with mercy and loving-kindness

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We were only home for two weeks and two days. The routine of the hospital was familiar. I sat by his bed, I ate food in the cafeteria, and when it got late, I slept.

I had said on the 5th that I was in family housing, but I was confused. I actually didn’t get into family housing for several days. For the first three days I entered a hospital lottery for the few sleeping spaces they had available on site. After signing up for a daily drawing, you waited to see if you would have a bed that night. If you weren’t selected, there was no place to go.

An ache of hope rose from the spaces we shared. The first night, I lay elbow to elbow with a dozen others in a room crammed with cots. Another night, I shared a closet-sized room with a frantic woman woman who paced more than slept. I met them at the edge, the brittle place where we twiddled with sanity. Unblinking eyes waited for morning, hot moons afloat on seas of tears. We burned holes in the ceiling, sparse light catching the glitter of our eyes, and waited.

Erik’s I.V. was connected to 16 different tubes of liquid medication. They warned me that his tiny kidneys couldn’t process all that fluid and that he would begin to swell. Within a few days, I no longer recognized him. His body lay dressed in only a diaper and socks as they were keeping him cold. Elastic dented his fluid filled legs, and the lids of his eyes bulged. The delicate curves of his ears became oddly translucent, puffed to an unnatural roundness under the pressure from within. I pressed my lips to them and whispered, “Mama is here, Erik. Come back to me. Come back.”

They told me that the cold would keep him unconscious. Only after they warmed him would we wait for him to respond. Until then, he lay spread like a frog pinned down for dissection. Limbs splayed, head faced to the sky, the delicate casing of his skin was tested as it stretched and stretched and stretched.

The ventilator was stressful for his tiny lungs. They switched him to another machine called an oscillator. The oscillator delivered air in tiny, rapid puffs and shook his bed and body like he was riding on a train. The chug chug chug of the equipment rattled our corner spot on the PICU floor sounding like a sputtering engine. Now, when I lay my head next to him, I vibrated with the unnatural jiggle of the aggressive machine. Even more of him had been taken. I prayed, and sought a place of peace.

I drifted more and more towards my new friend, Heather. She was Everett’s mother, and kept the same constant vigil as I. We talked quietly, held hands, prayed, and insisted on making our present lives our history. We plucked at faith, chewed its fruits, and helped one another to insist on healing.

I stood with her at Everett’s bed. In his three-month-old neck was a tube thicker than my thumb. Another was placed somewhere under his sheet. A machine called an ECMO served as a complete heart/lung bypass. “He choked on my milk,” Heather told me, kind eyes aching in a velvet rim of red. Later, she would learn that he had a rare genetic condition. It wasn’t her fault. Everett muscles were weak and he could not swallow. When our children hurt we always blame ourselves.

I looked at Everett’s face as he rested. His thick, dark brown hair glittered at the temple with copper and gold. He was beautiful. He was perfect. The tube in his neck drew out his blood, circulating it through an enormous machine. It was impossible to conceive. It was so unnatural.

Everything that took place there was an experiment. As a teaching hospital, many procedures were new or being tested. Keeping Erik cold was an experiment. Maybe it would help him; maybe it wouldn’t. When rounds were made, I stayed close by. I saw the clutch of doctors, students, residents and interns moving towards us like a common body. I waited to add my voice, and to hear theirs.

There were two doctors on rotation. One was a tall man with a loving face who erred on the side of hope (I came to learn later that he is internationally recognized). The other was a woman, practical and cold, who I came to call a funeral director.Each day, as the man came around he would review Erik’s case, and look for options. Each day, as the woman came around, she planned my son’s funeral. I came to hate her. He hadn’t even been warmed. There were more tests to be done. I would not let her steal my hope.

I ached for the NICU. I hated the NICU. At Children’s Hospital, NICU protocol was to keep babies until they weighed at least five pounds. Erik had been sent home at four. At Children’s Hospital, preemies went home with a monitor. When I had begged for one at Allegheny General, they laughed at me.

I ate my fury. I ate the words of Doctor Death and I ate my rage for Allegheny General. I felt it shooting through me with each heel strike as I walked the halls of Children’s Hospital. I force-fed myself on faith, and the assurance that my son, my only living son, would continue to live.

 

Erik Goes Back, Part 2

January 6, 2013 in Uncategorized

Psalm 72

11   All kings shall bow down before him, *
and all the nations do him service.
12   For he shall deliver the poor who cries out in distress, *
and the oppressed who has no helper.
13   He shall have pity on the lowly and poor; *
he shall preserve the lives of the needy.
14   He shall redeem their lives from oppression and violence, *
and dear shall their blood be in his sight.

They took Erik by helicopter to Children’s Hospital in Pittsburgh. I wasn’t allowed to join the transport team. I slipped into another tunnel, tight as a glove. It moved my car towards Pittsburgh.

Judy and her husband, Russ, stuck to me like glue. My brain was vibrating from shock. At once a mouthful of screams and an emergency in motion, I set out to claw together necessities and get on the road.

Judy and Russ stood with me at the mouth of the drive. They wanted to take me. They wanted to carry me. But my need was for silence. I couldn’t risk exposure to a misplaced word, one that might send me into fits of agony. “At least you have another one,” some had said when Arthur died. If I heard something similar, I would snap.

When I got to Pittsburgh I learned Erik was classified as a brain death; yet a few hours before he was crying, fighting and responding to me. I told them what I’d experienced and they were shocked. One doctor said, “We thought it was brain death because of the swollen lung, but we wondered why it was only on one side.” Wetzel County Hospital had not reported his condition prior to sedation.

I refused to accept an answer of death. Suspended by faith since the season of my narrow escape from Arkansas, I slapped plaster on, hammered supports to and threw weather-proof tarps over my collapsing faith. With new ferocity I stood on promises rung white in my grip. My son would live.

Like the rest of the broken mothers in the PICU, my path was laid to the pump room. Erik would not be growling and wriggling at my breast anymore. The Hospitals ferocious machines were ready to efficiently have me, and I would submit.

I hate the pump. I hate it. With my babe at my breast, we are a life joined as one. Torn at by the machine, I feel an unnatural and reluctant union. It triggers anxiety and pain around still-too-recent abuse. My babe at my breast night-and-day had been like a vacation. Now, the mechanical mouth waited for its meal.

In the plain of my lap hands jerked painfully. They struggled to rise, reluctant fledglings fluttering shakily down, again and again. Shoulders trembled above them with the heave of my sobs. The rise of wails filled the pump room. Plastic-on-plastic squeaked and clacked in the assembly of the machine. The sound was coarse, gutteral and impossible to bear.

Lost in sobs, my hand hovered somewhere near the power button. All that I was bore down on the switch and the mechanized animal roar its waking hunger. My head went back; my milk was devoured. The sweet, soft mouth of my babe was gone. My baby was gone. The separation seared me through like hot iron as I contracted against the panic and grief.

The Hospital had a Family House. A bed, a kitchen and transport were available. They gave nursing mothers free meals. I was one among many which, in itself, is an unusual experience. All the ways in which I was different from these other mothers fell away. We were a clan of the fearful hiding in  hope from the ragged jaws of grief. We would not be next.

I prepared for a miracle. I got books to read him, thought of songs to sing him, did all I could to break through the silence. I was at his bed from early morning until late at night. I rested my cheek near his tiny body, cool and still. The doctors were keeping him below body temperature to prevent brain swelling. When they warmed him up in three days, we might have some answers.

Next to my son’s bed was Everett Allan’s. They shared nearly the same birthday, though Everett looked like a plump, healthy little boy. Still, his condition was grave. I watched the back of his mother, long red curls waving above her quiet son. Eyes red with tears shone softly, tender soul bare for any who would see.

In the PICU, all patient areas were open to one another. His mother and I drew together near our common boundaries. Neither wanted to step away from her child. We took turns admiring babies, listening to hopes and fears, and just standing close. A camaraderie formed in our world outside of the world. We leaned in.

I had no idea how long he had. I dug in to see it through, to see my son back home, again. I would not accept this. It would not happen, again. I would raise this son.

In the dark night of the PICU, I kissed my child. I knew he would be there in the morning. With my whole being transformed into a living, walking, breathing prayer, I went back to the family house to rest.

Erik and Mama

 

Erik Goes Back, Part 1

January 5, 2013 in Uncategorized

Hebrews 11:35-12:2

35 Women received back their dead, raised to life again. There were others who were tortured, refusing to be released so that they might gain an even better resurrection. 36 Some faced jeers and flogging, and even chains and imprisonment. 37 They were put to death by stoning;[a] they were sawed in two; they were killed by the sword. They went about in sheepskins and goatskins, destitute, persecuted and mistreated— 38 the world was not worthy of them. They wandered in deserts and mountains, living in caves and in holes in the ground.

39 These were all commended for their faith, yet none of them received what had been promised, 40 since God had planned something better for us so that only together with us would they be made perfect.

12 Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God.

Five years ago today, my sweet son, Erik, went back to the hospital for the last time.

On the 18th of December 2007, they announced that Erik was going home. The following day he would be ejected from the NICU. I had no baby supplies at home, had made no preparations. My sons were born at 28 weeks. I had been at the Ronald McDonald House since. I was not ready.

He weighed only four pounds and had only been off of tube feedings for a few days. He had spent one night outside of his isolette, and none disconnected from the vigilant monitors. I was shocked. “No,” I told them. He wasn’t ready. We needed more time to be observed as a nursing pair, and Erik needed more time to grow.

They laughed at me. “You worry too much!”  Erik had stopped breathing several times in the NICU. The nurses were alerted by the alarm connected to his monitor. “He needs a monitor at home,” I told them. They laughed some more.

“How am I going to know he’s still breathing?”

Belly laughs, and a casual, “You’ll know.”

Panic began to take me. Everything in this NICU happened without warning. Flash: you are nursing. Flash: no more isolette. Flash: you are going home. I waited for the next Flash.

Do you know how small a four pound baby is? Without holding one in your arms it is hard to comprehend. The sight of my tiny son bundled for his “car-seat test” dwarfed him even beyond my own understanding. As I looked at him I wondered how he was going to survive.

Our last night in the hospital we were given a special good-bye room. Erik slept next to my bed. If he survived the night without incident we’d be set adrift in the morning. In the morning, we were both still alive. They sent us home.

through-the-red-doors-erik-mama-snuggle

I knew what the hospital was doing. They wanted to say he’d be home for Christmas. Part of me liked the idea, but the bigger part did not. His isolette was decorated with my Christmas drawings and cut-outs. I was happy to stay in the NICU if it meant him coming home stronger and more ready to live without constant monitoring. I sent out a scatter-shot of words, “At least give us a monitor.” It echoed back as a laugh.

The evening of December 20th they sent us home. They wheeled us out like a new mother and babe; and with a bit of pomp and worn-out fanfare, we launched. I felt myself break on the rack of grief. Battle-worn from the NICU, I felt like a fraud. My face sought the sky as I choked on tears. When would I get my answers? Where was my child?

I was short one babe. Nothing could change that. In the hall, the sound of two little boys grew distant behind me. The days following Arthur’s death, two ghostly boys has flitted in my shadows. A laugh would nearly sound at the edge of my ear. I grieved what I was missing, the joy of my beautiful pair as I moved toward the identity I rejected, the mother of only one living son.

Erik was in my arms. Finally, no plastic between us, he was in my arms., No one could say when to stop holding him. He was mine, and we were free. My heart surged again and again against the same rock, cracking. My mind built boxes and locks for those boxes as the free reign of my heart learned boundaries. I was bringing home my son! But my joy waited behind a thick, black wall of grief. In many ways, it is waiting there still. Grief was my new life.

It felt wrong. The whole ride home I watched him. No tubes. No wires. The forceful beak of Allegheny General had ejected him as a fledging; yet beneath his pile of blankets lay a naked chick. I was scared. His quietness might represent peace or death. I coveted the monitors at Allegheny General. Resentment rose in my gorge.

Two weeks and two days. That is how long we had. I didn’t know it on that two-hour car long ride home. We stopped twice for Erik to nurse, me so anxious and exhilarated, him unaccustomed to the unending offering of warm flesh and milk. More and more we merged, a nursing pair at last.

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Those two weeks and two days were magic. Erik’s hunger for human contact was ferocious. As he nursed, two fists gripped themselves nearly white as tiny growls insistently surged. I laughed when he nursed. He sounded like a Tasmanian devil. If you’ve never heard one, listen to their sounds on YouTube. That was Erik at the breast. Tiny fists worked, legs pumped, and his warm little body squirmed closer to mine with and between each suckle. He nursed like he was starving. He had waited for me for so long.

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His stomach was the size of a raisin. he would nurse for and hour-and-a-half, pass out, and then wake up fifteen minutes later to nurse again. I got less sleep than when he was in the NICU. I didn’t care. He was finally mine. This was the life I had imagined, and I loved it.

What bliss. My sleeplessness only merged with my euphoria. A soft envelope of joy suspended me over a sea of snakes. I turned my back to the writhing as much as I could to drink in the miracle in front of me. Erik needed me. Grief would have me forever. More boxes rose up from the blunt force of my hammer.

For the first two weeks and one day, I had help. After two weeks and two days, I was on my own. Sleepless but focused, we were going to be alone together for the very first time. I still wanted help; but just like the forceful ejection from Allegheny General in Pittsburgh, this wasn’t my choice. Erik and I were alone.

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It was around 9:30 a.m. We had been awake all night. Finally full, you fell asleep. Completely exhausted, I decided to nap.

Your face was like an angel, Erik. You were an impossible miracle alive on the earth. Everything about you said wisdom. Your bemused look at the world reflected it. I was waiting to hear what your gorgeous thoughts were thinking, Erik. I watched your smiling face as you were sleeping, watched the golden glow of the sun lift behind you. I wanted to know you.

You were gone. I snapped awake with a fear, fixing on the blue of your face. “Erik!” I lifted you and blew. Once before you had done this. I blew in your face and you revived. That had been about a week ago. Again, they laughed and said I worried. Brief examinations showed nothing wrong and the issue was dropped. I blew again, started CPR, and dialed 911.

I had no help. I don’t really know CPR. I reflected back on my high school health class and did the best I could. I continued CPR as I put on my shoes and talked to 911 on the phone. They couldn’t find my house. I had to call back.

My son was limp and blue. I couldn’t feel. A nerve plugged into a brain, I buzzed like a downed electrical line flailing imitations of life against the snow. I screamed at the ambulance as it passed once, then twice and then three times, unable to locate my street.

When they finally pulled in and took my son from me, I fell. On my knees, I pressed my face into the gravel and screamed. Screams and screams turned into prayers that turned into a long slide through another narrow tunnel even more confounding than the first. This is one of the last pictures I have of Erik. This was the shirt they cut off of him in the emergency room as they struggled with how to resuscitate an infant so small.

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They weren’t prepared. I heard what they were saying. They didn’t have equipment to treat a baby that small. They struggled to intubate him, did an x-ray and found they’d pushed the tube in too far. His lung was damaged. They backed the tube out, shifted him on the bed, and ripped out the whole apparatus. It began again, was inserted too far, another x-ray was done, and his lung was traumatized further. I sat and watched. I went dead.

Someone was touching me with something that felt like love. It was a nurse. Her eyes were looking at me, her hands were about me and her voice was leaking into my ears. I wanted it. She said she was calling someone, a minister; and a woman appeared. His wife. Her name was Judy. She never left me.

I want to say it was smooth sailing from then on. In truth, Wetzel County Hospital continued to let us down. After Erik was resuscitated, they called me over to talk to him. He was crying. He was fighting the ventilator. He was responding to my voice.

None of that was recorded. Instead, they almost immediately administered paralytic drugs and prepped him for transport. I begged them not to sedate him in his fragile state. The staff, untrained in the care of babies like my son, said it was protocol. Heavy sedation was administered. I never saw him awake, again.

At Children’s Hospital in Pittsburgh, Erik lay in an open-sided isolette. They knew he wasn’t going to move. What happened to the crying baby I had seen in New Martinsville? I asked my question into the dark to a PICU nurse who had no answers. The Hospital had taken him back.

…..to be continued

 

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