Arthur

November 4, 2012 in Uncategorized

1 Corinthians 13

12 For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.

The news of twins was shocking. I don’t absolve myself of my pregnancy; but appreciate that I didn’t sign on the dotted line. Still mired in abuse, I found two young boys growing in my body. Still unable to think clearly, I planned our escape.

Arthur Emmanuel at 16 weeks gestation

I had dodged motherhood for decades. When this ultrasound was taken, I was 40 years old. I was going to be a mother. God had given me two boys to bring into this world and culture. I was going to add two men to our society. I was terrified.

My daily attendance at AA, the only place I had found friendship and security, kept me in touch with God. I had been dropped in their laps by my abuser because he was a part of the program. My bombed out shell on their doorstep, they brought me in like a rain-soaked kitten. They kept me connected to God, and to prayer.

God spoke quite clearly: Trust. And then again: Run. The plan came together in that special way that only God’s plans do (you know what I mean); and soon, we were on the road.

Arthur Emmanuel was my firstborn son. He was the first child of mine who was touched by my eyes, and the first to be touched by my flesh. When you have living children crawling on you, shouting at you and picking your pockets, you probably focus less on those kinds of details. When your child dies at 10 days old, these details become part of a tiny collection of dreams dreamt in a tangled forest of hopes unseen.

Arthur Emmanuel, 8 hours old

Children born this soon are not even close to formed. The red skin is thin and fragile as paper; and each delicate system fights valiantly to stay in the now. Even as they are, these tiny bodies are intruded by needles, tubes and adhesives as part of the Frankensteinian effort to preserve life.

I say “Frankensteinian” out of my utter rage at the practice of medicine. The cavalier manner in which some decisions are made I find utterly appalling. Half certain and cocksure, lives are turned to misery or otherwise frittered away. I’d seen it happen before, with my own mother. Now, my child was at their mercy.

On my son Arthur’s tenth day of life, I came into the NICU to find him discontent. A nurse told me that he hadn’t been digesting his feeds overnight; and that an antibiotic was to be started soon.

In such a state of overwrought, and still confused by abuse, I gave my utter trust to the people in charge of my fragile son. What did I know about the care of premature babies? I clung to their words like a frightened child, even as questions arose.

“Something is wrong,” I told them. I was allowed to sit with my hand inside the portals of the incubator. I could have my hand either quietly on my son, or quietly near him. I was allowed to talk to him or sing to him.

I peered through the portal of his incubator from atop my stool, water filled legs hanging stiffly beneath. I wasn’t healing from my surgery. Going against doctor’s orders was causing a lot of swelling, irritation and pain.

But my children needed me. Each day of these fragile lives is important—each hour. I spent my days studying my children and my nights alone in pain. Hooked to the pump, I held my breath until morning. I would write later. I would take pictures later. I was so very tired, and my children needed me.

Arthur Emmanuel

Today, Arthur really needed me. My soft singing always calmed him. From the start, he was more sensitive than Erik. He was more prone to worry and more in need of deep connection. He had already learned that my presence meant comfort. I responded to him when he asked for my help; and learned to help quiet his mind.

Arthur would not quiet. I said again, “Something is wrong.” The nurse laughed at me. “He’s always more fussy than Erik. He’s fine. Go eat and come back, or you’ll miss your chance to hold him today.”

I went. I returned, ready to hold my son. A doctor held up x-rays and Arthur’s skin was yellow. Arthur could not be held, and may need surgery to repair a perforating bowel. “Where are the antibiotics?” I asked. “On the way,” was the answer.

That was the answer all day. While we waited, his eyes stopped blinking and he stopped responding. They were coming. Any minute. While we waited, his bowel began to perforate. Go home. We’ll keep you posted.

At about 11 at night, I went home. They told me he was stable; and they would call with news. My sister and niece had been visiting. We got O fries and went back to the Ronald McDonald House.

Before midnight, the phone rang. The hospital was sending an ambulance to get me. Arthur was critical. I put on my shoes and we left for the hospital, not waiting for their ride. I was going to be part of the transport team to Children’s for surgery. It was happening that night.

The whole way over I prayed. I rooted myself in flagrant disbelief that my child would be lost tonight. I had tried to do all God wanted, tried to live a prayerful life, tried to steer by the Holy Spirit’s intuition: I gave my life and will to God daily. I would chide Arthur for this panic episode one day, when he was healthy, strong and older than now. I got ready to be up all night.

I stumbled through the door of the NICU to find a doctor waiting. She had been on duty all day while we waited for the antibiotics that had finally arrived early evening. A little after midnight, she hooked me with her eyes.

“There is nothing more we can do,” she said. Her long, lean body was bent over mine. Black, tousled hair, set off by a burgundy scarf, sprang at the air with her gestures. It’s spiked and darkened tips matched the shave of her eyelashes as her utter human warmth outlined my child’s end.

They were keeping him alive via CPR so that I could say Good-Bye, they said. At his bedside, two nurses pumped furiously at his tissue paper body, screaming both heart and lungs into temporary life. My child wasn’t there. They forced an electrical response of mere seconds, just to garner my approval. They failed.

The staff hovered. A chair appeared and I fell into it. I was still shouting out demands, denial and disbelief. At some point, shrouded in flesh, they presented me my first-born son. A wisp, a whisper, he flew from me as I screamed for my own life.

“TAKE ME WITH YOU!!” was my clearest cry. As the ritual ended for them, I was moved away. My son was removed from me as they offered to “get him ready” “for me”.

Arms were all over me. I don’t know if my legs moved; but I ended in a room. When they brought him to me, he was dressed in clothes oceans too large. As when they first let me hold him, they had turned him into a stiff, manageable bundle. I was horrified. His face was raw, missing large chunks of skin where strong adhesives had damaged his fragile face. For the first time, I saw my son without wires or tubes.

What they brought me was the remains of a neglected experiment. Why had he gone all day without antibiotics? Why had my mother’s instinct been so easily pushed aside? My son had grown cold while they “prepared” him. Now, I watched him change in front of my eyes.

His face, trained by the tubes, began to contort. This is just what I didn’t want. I lay with him on a bed and watched him change with each glance I cast his way.

I couldn’t say goodbye, and I couldn’t continue. His arms around my neck, his voice calling my name, his little boy wriggle against my body as he reached to embrace me—all fled away. I screamed like there was no end to screaming. My dear one, my love, became an idea as his body became only flesh. Eventually, spent, I let him go.

My well-meaning sister rocked and hugged his cold, distorted body for hours while I lay writhing in grief. Unable to stop her, I was also unable to leave. My rational mind asked questions my grief couldn’t hear; and I was powerless to ask for space or respect.

I called my friend, Charity, back in Arkansas. She had lost a daughter, Lacy. She would hear my scream and help me. I lay on my phone, in bed, back to the sickening scene of my sister. When I heard Charity’s voice, distance fell away.

I can’t tell you what she said to me. I lay on the bed under flourescent lights and screamed. She heard me, she answered me, and I lived.

I am here, today. For now, I see only a reflection as in a mirror. Then, I shall see face to face. Now, I know in part; then, I shall known fully, even as I am known. Amen.

My last picture of Arthur, taken without my permission, after he passed away. It is the only picture I have of him without tubes or wires.

 

 

Fall Back

November 3, 2012 in Uncategorized

Tomorrow is the day that my son, Arthur, passed away. I am waiting for it like a sentence, while trying to let it flow away. What I spend so much time skating around is coming for me.

Today, I received word that Everett Allan passed away. Everett was in the bed next to Erik during his last hospital stay, and I forged a relationship with his mother, Heather. The PICU invites that. We were together for more than 12 hours a day, keeping vigil while our children’s lace-like hold on life persisted. Those conditions require friends.

The image of her face is burned in my mind like few others. The feel of her shower-fresh hair still anoints me when I think of those desperate embraces we shared, each day. Her son had nearly the same birthday as Erik and Arthur; but her son was over 10 pounds when he was born while Erik was a mere two and a half. Everett was big for his age; my own son was too small. Neither excess nor deficit would serve, as the PICU spelled its fortunes. Heather and I were companioned in fear, faith and grief; and we clung together as we fought for our children.

When Erik passed away, Heather grabbed me firmly by the arms. “You are meant to be a mother,” she told me. “You will be, again. I don’t know how; but you will.”

Hers were some of the words that sustained me in the months that followed, and even after all these years. She thrust both hands into me as I fell in ruins; and in her own broken, earnest hands, a few of the bits pressed together in electric undeniablity. She connected something.

I remember the copper/bronze hair that illuminated Everett’s dark brown temple. I remember the scripture Heather copied to place at the foot of Erik’s bed.

Jeremiah 29:11

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 ate it like it could sustain me. I looked at sweet Everett, the ECMO machine giving him life. There was a tube in his tiny neck that was thicker than my thumb. All of his blood ran constantly through it as the work of both heart and lungs was done by a machine. He lived five loving years with his family.

Over these years, I have followed Everett. He was my son’s companion; and Erik would never have another. For Heather and I, shadows crossed our eyes as we held each other back at Children’s Hospital. There was something that we already knew. We witnessed the change that would happen in each of us, as we sustained the rhythm of that unnatural life.

Tomorrow will be five years since Arthur passed away. The cloud that crossed my eyes was there for good.

 

Luke 12:32-48

 

32 “Do not be afraid, little flock, for your Father has been pleased to give you the kingdom. 33 Sell your possessions and give to the poor. Provide purses for yourselves that will not wear out, a treasure in heaven that will never fail, where no thief comes near and no moth destroys. 34 For where your treasure is, there your heart will be also.

35 “Be dressed ready for service and keep your lamps burning, 36 like servants waiting for their master to return from a wedding banquet, so that when he comes and knocks they can immediately open the door for him. 37 It will be good for those servants whose master finds them watching when he comes. Truly I tell you, he will dress himself to serve, will have them recline at the table and will come and wait on them.

What does it mean to keep my lamp burning? This scripture from the Forward Day by Day gives me something concrete I can do while waiting for my sons. Be dressed and ready. Learn to love, learn to give, learn to serve. Learn to apply that to myself, as well.

Today, I’m thinking about Everett. I’m thinking about his copper/bronze hairs and his mother’s sweet face, and how it was reflected in his. I’m falling back, back to the past and back onto my own back as the wind is knocked out of me. Catch me Father. Lift me back up, again. Plant my feet as I move; and show me Your purpose for my life. Amen.

Jesus Wept

November 1, 2012 in Uncategorized

John 11:33-44

33 When Jesus saw her weeping and saw the other people wailing with her, a deep anger welled up within him,[a] and he was deeply troubled. 34 “Where have you put him?” he asked them.

They told him, “Lord, come and see.” 35 Then Jesus wept. 36 The people who were standing nearby said, “See how much he loved him!” 37 But some said, “This man healed a blind man. Couldn’t he have kept Lazarus from dying?”

38 Jesus was still angry as he arrived at the tomb, a cave with a stone rolled across its entrance. 39 “Roll the stone aside,” Jesus told them.

But Martha, the dead man’s sister, protested, “Lord, he has been dead for four days. The smell will be terrible.”

40 Jesus responded, “Didn’t I tell you that you would see God’s glory if you believe?” 41 So they rolled the stone aside. Then Jesus looked up to heaven and said, “Father, thank you for hearing me. 42 You always hear me, but I said it out loud for the sake of all these people standing here, so that they will believe you sent me.” 43 Then Jesus shouted, “Lazarus, come out!” 44 And the dead man came out, his hands and feet bound in graveclothes, his face wrapped in a headcloth. Jesus told them, “Unwrap him and let him go!”

Five years ago today, my two sweet boys were one week old. As grieved as my heart still was, I fought to move toward the acceptance of their untimely and medicalized birth. I tried to see their premature birth as a different kind of miracle, as a chance to watch a process not often seen outside the womb. What can I say, I had stars in my eyes. Development outside of the womb will never be as robust as what nature intended; but I was a new mother, in love.

On my wrist I had two hospital bracelets. One identified me as the mother of Arthur Emmauel, the other as the mother of Erik Zebediah. I fingered these bracelets, stiff baby-blue plastic, as I sat attached to the pump.

In the hours while I waited to meet my children, five years and one week ago today, a lactation consultant came to see me. They told me I was mothering my sons by pumping, that they offered something concrete I could do in the now to nurture my boys. I embraced the pump with reluctant relish. Still in pain from my surgery, my heart broke and broke with every move I made.

The mechanical mouth of the pump is nothing like a baby’s. Personally, I don’t think you get the same rush of feel-good chemicals from the pump. The one I rented from the hospital was especially aggressive. They required the use of the hospital grade pump, saying none other was sufficient to get milk supply to the necessary level. They prepared me for the day when I would have two, fat, wiggly babies on my lap instead enduring my forced marriage to the hungry, mechanical mouth.

My day was filled with the pump’s hunger. As any nursing mother will tell you, the young nursing babe possesses you. So the pump and I went, arm and arm, toward that happy day of homecoming. All day and night, I met with the pump to discuss our important work. I delivered bottles, bottle after bottle, night and day. The refrigerator at the hospital filled, as did the one at the Ronald McDonald House.

They told me looking at my babies would increase my milk supply. I didn’t need the encouragement. I got up at five a.m. to pump, then got on the road for the hospital. Fresh from my own, hurried surgery, my body was not responding well. My abdomen swelled with so much fluid that my legs scarcely bent. Up and down stairs, long hallways, and hours spent on a tall stool next to incubators puffed me out to an incredible size.

The hospital staff voiced concern; but I wouldn’t slow down. My babes were only getting bigger, each day. They were living through a terrible trauma, premature life outside of the womb. I would be with them as much as I could.

I carried a bag of pumping gear. The hospital pump is too heavy to carry. When I was at the hospital, I used their pump. I had to be either at the Ronald McDonald House or the Hospital at any scheduled pumping time. Three hours, around the clock: let up could lead to loss of supply. I carried bottles, cups and tubes everywhere I went. I went to the hospital and “home”, again.

I got to know the staff. I was a fixture in the rooms of the NICU; and some of the people I met there connected with us deeply. Through little flickers of light, we were sustained.

Everyday with a preemie is full of questions. Little incidents arise and, hopefully, resolve. They develop infections, stop breathing, everything is watched  to the detail.  We watch them, like a caterpillar in a box, hoping they will grow wings.

When my kids were about a week old, I was standing outside of the hospital elevator, on the way to the cafeteria. A mother from the NICU talked on the phone, pacing and weeping. Her little girl had been born at 24 weeks and had been plagued with numerous concerns.

My heart turned sick. There before the grace of God…. I corrected my panicked thinking and took stock in all I had. I looked at what was right instead of what was wrong. I prayed for the mother and her child, and then dragged my swollen, burning legs into the elevator.

When Jesus encountered the grief of his friends for his friend, he cried. Jesus. Doesn’t Jesus know it will all be o.k.? Shouldn’t Jesus just buck up and soldier on? Don’t cry, Jesus. It was your Father’s will, after all.

Jesus wept. Why? I don’t know why. I may never know why; and in this life, I most certainly won’t know why. Jesus, with all that he knows. still cried. Grieved. Jesus grieved. Jesus grieved like I grieve, his eternal knowledge brought to bear.

One week old. The refrigerators kept filling as I kept pumping. my bottles sometimes held only teaspoons; but my boys were fed entirely on my milk, as we strongly recommended. I didn’t think about my stockpile; I just kept pumping.

Later, the hospital staff would ask if we could store some of the milk at home. My family left with about eight large hospital bags, probably double a normal grocery bag size, full of bottles of frozen milk. I had made every drop in my own body. I made it out of panic and love, out of grief, hope and faith.

My family carried it away and stored it in my Aunt’s freezer. Later, it would be thrown away. The machine’s hungry mouth would never be abolished for these two boys.

Jesus was still angry when they arrived at the tomb. Jesus. Jesus, with his divine knowledge, was angry and hurt, filled with impatience for the questioning crowd. Jesus beckoned his dead friend out of his grave; but a short while before had mourned him? Why?

Guess what? I don’t know what. I won’t know why. But he did. If Jesus, with his immortal knowledge, can cry for his friend then how much more is it reasonable for me to grieve, with my earthly ignorance, for my two sweet children?

Arthur was cradled more by that plastic box than he ever was by me. I was given an hour a day, at that stage, to hold my children. Do you realize what that means? I held Arthur in my arms less hours than the hands on my fingers. I stretch them out in front of me, and see the gate of a tomb. Jesus wept; and I weep, too.

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