Amplifying an absence

New year, new diary

Neve, age 7, August 2020. After neurosurgery, before radiotherapy and chemotherapy began. Painted in Vivianite watercolour paint.

Four days ago, I unwrapped my new 2024 diary. It is a crisp navy blue, unlike my 2023 diary, which is more of a teal colour. Normally I love this moment, the experience of new stationary, the untouched nature of a new diary, the empty pages, the potential. However, this year is different. I only realise this as I pull the thin plastic from the diary. I am entering a time when there will be no elements of Neve in my diary.

Blue colour of 2023 diary, alongside navy colour of 2024 diary.

I call it my diary, though it is officially called a weekly notebook diary/planner, which is also accurate. My diaries normally swell with our life, with playdates, lessons, plans, planned time of no plans; everything is here. The left side has the week to view, the right side is blank and lined, a notebook, ready for to do lists, meal plans, shopping lists, reminders, recipes, ideas, sketches. This is the sole place where everything in my life ends up.

To be clear, there is also a digital calendar in my life, multiple ones in fact. However, I regularly transfer and transcribe events and appointments to my paper diary. This feels like the heart of my world, even more so since grief has brought memory issues and brain fog. If it is not in my diary, I may not remember it. Digital calendars are brilliant but, for me, there is nothing like writing by hand, crossing out by hand, thinking and planning, by hand.

Throughout her life, Neve was an animated, dynamic and flourishing part of my diaries. Twelve of them, in fact. I save them all; I could go back and look at them. For now though, I will surmise. I suppose the early ones in her life would have included visits to the health visitor and to baby groups. Though really, as a third baby, Neve mostly just came along with us. So it’s more likely that those diaries included toddler groups and school activities for her big sisters. In time, there would have been a shift towards work and childcare, and then onwards to preschool and then school. There were swimming lessons and piano lessons, playdates and park visits. The diaries were full enough, there were always meals to plan and shopping to be done. Life was not without its complexities but Neve was interwoven through it all.

Neve, approx age 6 years, painted in Burnt Umber and Ultramarine blue Cotman watercolours, from Winsor & Newton.

When the pandemic began, in early 2020, it thrashed through all of the usual timetables and plans; new schedules and to do lists were required. My diary, like so many others, metamorphosed into an attempt at balancing schooling at home, education, entertainment, work and lockdown life.

By June, there were new notations in the pages of my 2020 diary. Headaches, fevers, lethargy and more sleep than usual. Then a blood test appointment. Followed swiftly by a GP telephone appointment, during which I jotted down the blood results in my diary. Nothing dramatic but something wasn’t quite right. Did I put the subsequent A&E visit into my diary? Probably not. It was too sudden. Blood results combined with ongoing symptoms. I finished my work meeting, collected Neve from school and off we went. Writing it down would not have been my priority, when it was clear that A&E was where Neve needed to be. Not written down, as I don’t use my diary like this, but I recall the unease and apprehension.

Then there was probably a gap, as our world caved in around us. I wonder whether I initially bothered to cross out everything that was no longer a reality? Did I mark down Neve Major Neurosurgery? This wasn’t really the kind of thing that I had experience of scheduling in.

It wasn’t long before it became clear that I needed a dedicated Neve notebook, that jotting everything into my regular diary was no longer realistic. For the next few years, my diary was joined by a companion, completely dedicated to Neve and her complex needs. Oddly, this Neve notebook feels precious to me; a record of a large fragment of Neve’s life.

And yet, despite this dedicated notebook, Neve also remained a part of my regular diary. It would not have been long before I found my feet again and returned to my diary. Life was not stopping. In fact, it was about to get a lot more complicated; organisation and therefore my diary were necessities. It was time to cross off all work related activities for the foreseeable future. These were replaced by medical appointments, oncology visits, psychology assessments, radiotherapy planning sessions, daily radiotherapy appointments, weekly bloody tests, visits to our hospice, time in hospital and as much time in school as was manageable. Neve, and therefore I, had a full schedule of active cancer treatment. I have no doubt that a sense of clarity and organisation was my brain’s attempt at feeling some element of control, in this devastating new world that we were inhabiting.

The last few diary appointments in this phase of life would have been an MRI appointment in mid November 2020, with a followup appointment a week later. My diary did contain many more months of oncology appointments, chemotherapy treatments and MRIs but this followup appointment was destined to be another turning point. I imagine another gap, as our world caved in again. Or possibly it just caved in even more deeply.

Once again, it was time to cross things out and shift our focus. All upcoming cancer treatment appointments were struck through. There was no hope of a cure. Filling a diary with painful, traumatic testing and treatments, which caused Neve to suffer, was no longer the right thing for her.

In time, my diary would once again have been replenished with new Neve related activities, with a focus on quality of life and the precious time that she had left. Visits from Neve’s teaching assistant and her teachers, from her friends. Carer visits, nursing shifts, initially infrequent, but increasing over time, as Neve’s needs increased. Hospice visits were not always reflected in my diary, as they tended to be last minute, in response to suffering and symptoms that needed palliative care support. Possibly I added them in hindsight; the record of activities is almost as useful as knowing what is coming.

By 2023, the diary would have been feeling fuller, we were lucky that Neve was generally very well supported. Most days there was help; increasingly, the days were filled with multiple visits and shifts. Carer, nurse, carer again, overnight care shift and repeat. Visits from the occupational therapist, from the physiotherapist, from the podiatrist, phone calls with speech language therapists, visits from the NHS community nurses, the hospice doctors and nurses, the play specialist, the hospital school teacher, social worker visits, meetings with Continuing Care, with nursing agencies, visits from Neve’s friends. Life may have felt isolated but it was also busy and full of good people, who brought knowledge, wisdom, funding and joy.

And then, as April tiptoed towards May, Neve died.

Neve, age 7, nearly 8, in October 2020. After surgery, radiotherapy and the first round of chemotherapy. Painted in Cotman watercolours, including Ultramarine blue, Burnt Umber and Burnt Sienna.

Another gap as our world shifted, as time stood still, at least initially. Then, before long, a crossing out of the May nurse and carer shifts and visits. The addition of removal of bed hoist, collection of bed, agency visit to collect documents. Neve related activities were gradually replaced with things that had been important yet impossible, while she was alive. Things such as activities with my other children, running, doing the school run regularly.

As 2023 progressed, there were fewer and fewer mentions of Neve in my diary. Some Neve related activities; involvement in palliative care research, a few speaking events (about Neve), bereavement support for me, a visit to the stonemasons. Days go by without her name appearing.

Is this how somebody disappears?

Neve is there in my mind, I think about her all of the time. But if her name does not appear in my diary, the heart of my life, am I keeping her memory alive?

Normally unwrapping my new diary is a time of pure anticipation, of looking ahead with hope, of the smell and feel of a new diary. Yet this year is so much more complex, as I ponder moving ahead into 2024 without Neve.

I start by removing the sticker that adorns my 2023 diary and I transfer it to my 2024 diary. This sticker was Neve’s. Its origins remain a mystery, as is the case with so much, when you have so many people in and out of your house and your child’s life. Not that this is a bad thing, I want to be clear. When you have a child with such complex needs, help from Social Care and Continuing Care and Health Care is a wonderful thing. It feels like a blessing, that my child had relationships with so many other (mostly) mother figures; things like stickers and hair bands and teddies came and went, often without my noticing. This feels right, in its own way. Neve was getting older; had she not been ill, she would have had relationships with others in which I played no part. I like that she had this, even if it was in a different way.

Neve had asked to put the sticker at the foot of the bed, where she would be able to see it. A carer had reassured me that this bed, lent to us by the NHS, would be thoroughly cleaned when we were done with it, so affixing a sticker was a fine plan. Even then, I understood that we would only be done with this bed when Neve died. The sticker, an image of a typewriter and a Jack Kerouac quote, lived there for many months, if not longer.

One day I will find the right words, and they will be simple.

Jack Kerouac

After Neve died, it was time to return the bed. This is noted in my diary on a Friday in May, a couple of weeks after her death. That week also contains draft sketches of memorial labels, intended for Neve’s teddies. I had assumed, before she died, that I would want to hold on to the bed for a bit longer, so that I could lie in it and feel close to her. In actual fact, this was not what I wanted. Her bed, so precious and loved and full of Neve when she was alive, went back to being just a bed when she died. I felt very little attachment to the bed. Neve’s bed was not Neve. In fact, any attachment I felt was mostly towards the people who were part of Neve’s life, rather than to the items.

However, the sticker reminded me of Neve and the quote seemed apt. From May to December 2023, it resided on the cover of my 2023 diary. Now, it has moved to my 2024 diary. A bit of Neve to bring into 2024.

What will it be like to step into a new year, one not touched by Neve’s vitality and dynamicity? Will it be like 2011, the year before she was born? A very wise woman once told me that some people find it helpful to think about their upcoming death as similar to the time before they were born. This made sense to me, but I am not sure it works for those left behind after a death. I didn’t miss Neve before she came into existence but now I miss her with a profound ache. Moving into another year feels like a visceral abandonment of my child. I felt this too when I left the country for the first time, after her death, without her. Rationally, I know that she is dead, that travelling elsewhere or moving into a new year is not leaving her behind. Yet I am not sure my brain is fully rational.

Instead, it feels as though the gap between Neve and I will increase. I will carry on ageing and she won’t. My diary will continue to fill, meals will persist in needing to be planned and made, my need for to do lists will endure but Neve won’t be a part of any of this. All future diaries will be void of Neve’s vigour and vitality, a silent amplification of her absence.

Blues of my diaries.