Journey: 6

It’s been six days since the accident. It feels like six years, and when I look in the mirror, I don’t recognise myself anymore, even though I wasn’t burnt.

An article about the accident appears in a newspaper (no, three articles in three newspapers). I know, when people read it, they are thinking, somewhere deep inside, “Thank God this didn’t happen to my child.”

Maryke, Moll and I take a long walk on Strand beach – the family thinks I should get away for a while. I agree reluctantly. Absurdly, we start laughing about silly things. The marijuana tree my dad discovered this morning in the furthest corner of my garden – my garden, of all people – is so crazy that we just can’t stop. I cry with laughter. Laugh till my body aches. Laughing and crying are two sides of one coin, and we know it. This is hysteria. Pockets of madness trying to escape somehow. We probably need it.

Aniek is in the operating theatre. Dead skin is surgically removed – a process known as debridement. While we wait, one of the doctors comes out and tells us that she is still in grave danger. We don’t have the strength to laugh or cry now. We are stunned. Another word I’ve hardly ever used. And now I am stunned every day.

Another doctor suddenly comes through the doors and hastens towards us.

“Mrs. Nieuwenhuis, we need your permission to do a colostomy on your daughter.”

I stare at him uncomprehendingly. “What is a colostomy?”

“It’s when you make an artificial opening for the colon. In Aniek’s case it would be on her tummy – fortunately there is a patch of undamaged skin that we can use. It will prevent faecal matter from coming into contact with the burnt skin and it will lower the risk of infection. It is only temporary. Can we go ahead?”

He talks too fast for my slow mind. I nod.

An angel of a doctor, Jenny Thomas,[1] sits down next to us on the little wooden bench outside the theatre. She has come to give us courage. How dependent we are on the words of doctors: overheard, whispered words among themselves, the looks, the dots on graphs… how our vocabulary has changed! So many new things. Suddenly we talk about debridement,[2] Integra,[3] Acticote, ventilators. Morphine and adrenaline. Thorny strangers that have nestled in among comfortable words such as garden, school, car, kitchen, bread, sleep. We learn to interpret blood pressure readings and heart rate, and we know whether it is good or bad.

Aniek emerges from theatre after four hours. We find a little bit of healthy skin at the side of her neck that is not covered with bandages. It gives me hope. I hold my fingertip against it for comfort. Mine and maybe hers too. I ask the doctor to make a note on her chart that they keep this bit of skin uncovered in future, because it’s the only skin we are able to touch. The doctor painstakingly writes down my request. It makes me feel important to be taken so seriously.

To see my child like this, wrapped in bandages from head to toe, tubes everywhere, connected to monitors on all sides, is beyond frightening. My heart races, pulses in my throat, incessantly – there can be no relief from it. An icy cold hand grips my heart tightly. I have to concentrate to breathe normally, to prevent me from gasping with suppressed panic.  At times I want to give in to it, to let the panic explode in me like a dam that breaks through its walls, but I fear that it would rip my whole being to pieces if I let go; that I would fall on the ground and kick my legs like a madwoman, or run screaming through the corridors, unable to stop. This is what I want to do. I cling to deep breathing, to control. The constant suppression of this immense panic causes me to become light-headed, and often I have to sit down with my head between my knees. Each time a doctor discusses the seriousness of Aniek’s condition with me, I have to sit, or else fall to the ground.

I can’t face going to see Paul. It’s just too hard to see him, hear him, touch him. His swollen face, his familiar and yet unfamiliar skin with freckles. The smell of the hospital, the bandages, his discomfort last night, how he tried to get out of bed, tried to grab things, tried to talk. I send him three pillows and his soft toy from when he was a boy. I hope that he knows my thoughts are with him all the time.

Intensive Care is like another planet. Everything is strange. There are machines that we have to learn to understand. There are people around us speaking a strange language. I want to know everything. I want to understand every number on every monitor; and to know the implications of every number. I take Aniek’s file out of the trolley next to her bed, and read the notes of doctors and nurses. Normally I would not dream of doing such a thing, scared to be caught out reading confidential information, but now I don’t care. She’s my child; I have the right to know what is being said about her. If I see something I don’t understand, I ask, and I keep asking until I understand. It helps to combat powerlessness.

Aniek is kept sedated with medication. There is no indication that she knows we are there. Where is she, I wonder. What is she thinking about, what is she dreaming? Is she scared? We sit and talk, non-stop, even if we talk about trivial matters: we describe the curtains, what the nurses look like, their names. We reassure her, over and over, that we are here, all of us, and that she is never alone; that she is in good hands, she is safe, she is getting the best care. We keep vigil day and night. She must never be alone. And if she should die, she must not die alone. I rest my forehead on her bed and repeat to myself, “Aniek, you’re alive. You’re alive. Live!” I’m not asking. I’m insisting. You live.

The doctors and nurses behave around Aniek as if she is completely awake. Such respect, such tenderness, such care I have never experienced. If they need to turn her, they tell her what they’re going to do and why. No-one talks about the seriousness of her condition near her bed, and if one of us starts crying, one of the nurses gently leads us outside, holds us, reassuring us that she is in the best place.

Acquaintances pop in to say hello and to hear how Aniek is doing. I get tired from all the talking, of people asking questions, needing information. The process of searching for words, of moving my tongue exhausts me, moving air over my voice box exhausts me.

The days are long, the grief is long. Curled up like a snake inside me, ready to strike. At home I walk down the corridor and see the light in the main bedroom is on. “Hey,” I think spontaneously, “Paul must still be awake.” And then, the fist into my stomach, punching out my breath.

We sit, like birds getting wet in the rain and simply unable to avoid getting soaked, between hope and despair. We cannot let go of hope, because the alternative is too awful to even contemplate. Each day that she lives, is one more day. I repeat to myself, “She is still here. That is all. She is still here.”

And all around us, other people’s children are dying.

***


[1] Co-author of A Practical Guide to Paediatric Burns. See references for details.

[2] Debridement: surgical procedure of removing dead, burnt tissue to prepare for skin transplants.

[3] Integra: artificial skin replacement with collagen fibres which stimulate skin regeneration.

Erica Neser (c) 2011

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