Half a year, twenty-six weeks, six months

Neve, August 2019, age 6. Painted by me, Emily Tammam, in Burnt Umber and Raw Umber Dark Neutral from The Stoneground Paint Company.

Today’s post was meant to be about the links between the end of life phase and labour. That time, when the transition we are waiting for approaches. When pregnancy begins to end, with birth imminent. Or when terminal illness begins to end, with death imminent. The links are there, there is no question. But I am pondering other things today. Like a stop-start birth or death, that post will have to wait. Today is for reflection. 

I am contemplating a different transition, a moment in time. This moment somehow encompasses today and tomorrow. Sunday and Monday. Neve took her final breath on the evening of the last Sunday in April, half a year ago. As I publish this now, again on a Sunday evening, we are here, on the cusp of this moment, twenty-six weeks later. Tomorrow, Monday, October 30th, marks the full six months, to the day. 

We are also moving forward, ever closer, to Neve’s birthday. I don’t feel particularly attached to the days of the week upon which my children were born. The calendar dates will do. Yet somehow, I feel Neve’s death as belonging to a Sunday evening. 

How did we get here?, I wonder to myself. I wonder where Neve is. I don’t mean where she is physically. I know the answer to that. Neve is buried, with a beautiful tree keeping watch over her, shielding her and holding her. But what was that decade, those three years? It is hard to hold on to her physicality, to understand that she really was here, she was a part of our family, our life. I think about the medication, the equipment, the nurses and carers and it would be easy to wonder whether it was all a dream. Our house has returned to what it was, the medication is gone, the equipment in others’ homes now. It is almost possible to believe that the decade of her life and the three years of illness weren’t real. 

But the evidence remains. Traces of Neve’s life with us. Her teddies, her artwork, our memories of her. Smoked salmon in the freezer, freddos stashed away, hidden from other chocolate seeking hands. Each item, each memory, has a story, usually with a person attached, a connection. And in cupboards, in drawers, in boxes, there remain the remnants of her illness, her cancer, her suffering. I find boxes of gloves, tucked away. Syringes, fallen down behind drawers. Eye patches, NG tube tape, a broken thermometer. Hospital letters, so many of them. 

The Methadone may be long gone but sometimes I stumble upon a bottle of paracetamol, prescribed for Neve. She was here. That label tells me so. They don’t prescribe medication for children who don’t exist. 

There is one bottle, opened only days before she died, dated accordingly. It strikes me as inconceivable that this opened bottle of paracetamol is still here, when Neve is not. Unthinkable that a bottle of paracetamol would still contain medication, six months later. A reminder that most children don’t suffer like Neve did. They don’t need cupboards full of medication, repeat prescriptions of multiple paracetamol bottles. Life before cancer would have been this bottle of paracetamol, hanging around for months and months. And now, we are back to that life, this opened bottle, waiting for an innocent fever or a minor headache. 

I have stopped putting dates on medication bottles, if I open any at all. I have returned to my pre-cancer life, where expiry dates are of little importance. It is hard to believe that I faithfully dated every opened bottle of medication, with a green sharpie, throughout Neve’s illness.  Does it really matter whether the Dioralyte is in date? Not really. Not unless your child is dying and you don’t want to risk her suffering any more than she already is. But that time is done. We are back in the world of very expired Dioralyte, of opened bottles of paracetamol that hang about. 

These remnants of Neve’s presence also highlight the profound impact of her brain cancer. Its consequences were immeasurable. It touched every part of her and the effects were constantly changing. It disabled her and it changed her personality. At times I felt that it was erasing the child I had known for her first seven years. I was losing the little Neve. 

I suggest to myself that this is normal, that when children grow we lose the young versions of them. But this feels different. This was not a young child who was merely growing, leaving her childhood behind. This little girl was losing her childhood, herself, her life. I was losing this little Neve, again and again.  Alas, wading through the trauma of accompanying a child to die safely left little time or space to stop, to grieve the accumulating losses. And then, upon this heap of traumas and losses, came her death. Who had died?, I wondered to myself. In the immediate aftermath, all I could understand was that the ill Neve had died.

Try as I might, I can’t find a word to describe what was happening. Possibly the dictionary doesn't know that cancer, ill health, trauma can lead to situations where people, like phones and books, come in versions, in releases, in editions. Though, to be clear, the former generally causes deteriorations, the latter ameliorations. 

It was only after Neve’s death that I decided to learn to paint people, so that I could paint her. Did I think I could find her again, if I could paint her? Mostly, I am drawn to painting Neve as a young child, usually between the ages of five and seven. I find myself reconnecting with the little Neve. This reconnection ushers in the beginnings of grief, as I ponder the death of the little girl. Painting is slowly allowing me to get to know Neve, again, as she was. I have no doubt this will unearth more grief as I reconnect and fall in love, once more, with my child. Who knew that I would have to do this after she died? Nobody quite tells you what brain cancer does to a person. 

Initially, after her death, I would look at pictures of little Neve and I would find myself wondering, asking her, “who are you?” If it was my ill child who had died, who was this well child and where was she now? I do this a little bit less now, as I am getting to know her again. 

And the ill Neve, the Neve who died, who was she? I think I know her, she was the child who I cared for, who I advocated for, who challenged me, who kept me busy and amused and frustrated. This is the Neve that I recognise. Oddly, I have not painted this Neve much, not yet. I sense this will unearth trauma. I plan to go gently. 

Where does this leave me now, at this midpoint in the first year of her death? I am unsure. People ask me how I am, regularly. I know they mean it, they really are asking and are open to the possibility that I am not ok. But I don’t know the answer. As others before me have said, it feels like Neve was just here with us and it also feels like an eternity has passed since I last held her. Is six months the blink of an eye or is it really an eternity? 

I recognise an odd feeling of hope, as we reach the peak, the summit. Six months up and now on a downward stretch, back to where we last saw Neve, in April. Is it possible that my brain thinks that a return to April will be where I find Neve? I know, with all of my rational thinking, that this can’t be true. I know that we are only moving further and further away from Neve, that we will leave her behind in 2023, as a ten-year-old. But even so, I feel a pull towards April, as though there might be remnants of her there, waiting for me. 

So now, I grapple with the ongoing feelings of shock, of confusion. Was Neve really here? Was she really ill? How could she have died? How could she not be here? How do people just disappear, their essence? My brain can’t quite believe that Neve was here, that she was so shockingly ill for three years. Equally, my brain can’t quite believe that Neve isn't here anymore. That I can’t tell her one more thing, share my paintings with her, snuggle up one more time, hold her soft hand. 

I anticipate that my grief will only deepen. I am unsure how I will process Neve’s upcoming birthday. My brain is puzzled, pondering whether it's possible to age after you die. Does a child turn a year older, on their birthday, even when they are not alive? The rational side of my brain understands the reality, which is that I will be leaving this ten-year-old behind, frozen in time, in 2023. 

People say the second year is harder than the first. This feels possible. Will my heart break again, when we get to April 2024 and I don’t find Neve there, waiting for me? Will that be what makes it feel real?

I know that I have trauma to process from these past few years. My instinct is that my trauma is holding back my grief. As I process this trauma, I anticipate unearthing deep pools of grief. For now, the tears are few and far between. Will that change? As this fragment of Neve’s life extends and eventually overshadows the other fragments of her life, I envisage missing her more and more. Not just the frozen-in-time Neve but also the child who won’t get to go to secondary school, to be an adult, a parent, a doctor. I recently learnt a new tense, the future lost, which addresses this. They don’t teach that in school.  

Sitting here now, I can’t quite understand how grief could get better with time. As the trauma ever so slowly starts to be processed, I feel the grief slowly increasing. I will continue to paint Neve, to understand her, to know her, to find her. The little Neve and the bigger Neve and all the Neves that she was. If she is still Neve now, in the present tense, which Neve is she? A venn diagram of tenses and dead children. Past tense, present tense, future lost. Who was she, who is she, who would she have been?