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.”