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.