(01.09.24)
My dear Neve,
The other day, while sitting in a webinar about Compassionate Leadership, 480 days after your death, I had a lightbulb moment. Suddenly, I understood; what you had needed was a story. I don’t mean the stories that you were telling yourself, like we all do. No, I mean stories from outside of your own head, stories to give you strength and wisdom, to inspire and comfort you.

(01.07.24)
As I reflect back on Neve’s final days and weeks, my overriding recollection is of a pervasive precariousness. So much uncertainty, pain, loss of dignity, and complex and acute needs. All of this, and more, on the back of three years of illness and emotional trauma. I was on edge and hyper-vigilant, prepared and ready. 

(23.05.24)
We are now three weeks into our second year without Neve. My stomach turns and knots, as these words settle in my brain.

(23.04.24)
Thoughts and memories, images and reminiscences of Neve echo themselves within me. They bounce about within my brain, vivid and evoking, searching for a way out, a way to be heard. Without a reliable means of releasing them through tears, I feel on edge, overwhelmed, brimming with emotion. Uttering her name, sharing her, recounting the joy and the sorrow, the absurd and the tender-hearted tales, this is what I have. When you ask about Neve, when you listen, when you share your anecdotes and memories, this nourishes me. Your ability to hear her story is a meaningful solace.

(29.03.24)
Naively, I thought that grief would involve tears. Sobbing, crying, wailing, weeping, bawling, whimpering, lamenting. That is the image of grief that I imagined.

Curiously, instead of tears, my grief reveals itself as exhaustion. Weariness, heaviness, bone-deep fatigue, tiredness like nothing I have felt before.

(17.03.24)
Education played a fundamental role in Neve’s life, both formal and non. I imagine this is the case for many other children, irrespective of their medical and palliative care needs. Alongside family, friends and professionals, I spent hours pondering, brainstorming and dreaming up possible schemes, to meet her needs and her wishes. As I write this and you read my words, I urge you to focus on how important education was to Neve. I hope that one of Neve’s many legacies can be that the next child you meet, who stands, sits or lies at the crossroads of palliative care and education, is supported to learn and discover, in the way that all children deserve.

(19.02.24)
Control. Precision.

Here. Now.

Without wishing to sound overly dramatic, art is reshaping my brain. It is the source of what I can only describe as a paradigm shift within me. Drawing and painting is affecting how I feel and think and act. Moreover, how I feel and think and act shapes my drawing and painting.

(30.01.24)
Somehow, this time period, bookended by her final breath and a chance date on the calendar, feels significant. Nothing will change today, yet a door will close. A circle will complete itself, a denouement of sorts. Nine months of pregnancy, almost ten and a half years of life and now nine months of death. It is perplexing to feel so drawn to this symbolic period of time. Neve’s pregnancy, like most pregnancies, was not precisely nine months long. So to equate the time span of her pregnancy with the time span since her death feels clearly irrelevant.

(28.01.24)
Looking back a few years, it feels unfathomable that being an artist might become part of my identity. I have always yearned to study again, to do a degree just for the joy of learning subjects that fascinate me. Ideas of possible subjects were bountiful; not once do I recall pondering art school. I was firmly not an artist.

(31.12.23)
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.

(17.12.23)
Immediately after Neve’s death, her eleventh birthday felt as though it belonged to the distant future. There was still more than half of a sun to orbit. Surely, this would give me ample time to absorb the concept of Neve’s birthday, Neveless?

(01.12.23)
Up to and including her seventh, Neve’s birthdays were no different to the rest of our family birthdays. A day for pain au chocolat for breakfast, gifts, cake, good food, chocolate, friends and family. A slight blip for her fifth birthday, in 2017; I had rashly assured Neve that her birthday would occur before the new baby arrived. In actual fact, a two week old baby sister was an unexpected component of that birthday celebration. But mostly, her birthdays were predictable enough, happy affairs.

(19.12.23)
I often forget that laughing fruit and vegetables are not normal, everyday entities. People look at me blankly or with a puzzled face when I casually mention these artefacts. Possibly they wonder whether I am ok. Little do they know that Laughing Bananas are what make me ok, when I don’t feel it.

(13.11.23)
Finally, the weather seems to be turning. Warmth in November is disconcerting. Neve was born on a frosty November morning; mild air at this time of year doesn’t sit right. The chilly air is bracing and very welcome. I pull out wool sweaters and dresses, boots, thick socks. In Neve’s final years, her temperature regulation was all over the place but mostly she was much too hot. She would have welcomed the cooler weather. I look forward to fires and cozy blankets, warm soups and hot drinks.

(05.11.2023)
I am drawn towards the concept of space, towards an abstract sense of freedom, towards peace and solitude. A visceral pull, a yearning for the comfort and containment of space and spaces that hold. It is only now that I comprehend the duality of space, the openness and freedom with the containment and boundaries. Sometimes space feels like solitude, other times like a community. Both are indispensable. Perhaps it is not surprising that space feels integral to both birthing and dying. Today, I am contemplating space in the context of labour and of active dying, of end of life.

(29.10.203)
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.

(22.1.2023)
It is hard to quite imagine how my experience of the time of Neve’s terminal illness could possibly be in any way akin to the time of my pregnancy with Neve. And yet, somehow, the final months and years of her life regularly evoked the period before her birth. The various parallels of pregnancy appeared both in real time and now, in hindsight, they continue to come to me.

(15.10.2023)
I don’t know when I first realised that birth and death were akin. Possibly, it began as a subconscious impression, an inkling of familiarity, of comfort. In time, it became an unmistakable way of thinking, a tangible lens through which to understand this new uncharted-by-us world.

(08.10.203)
Before I faced my child’s possibly imminent death, I could not have imagined the nuances of hope in those very precise moments.

On the borders of life and death, at the cusp, there was a crossroads of sorts, two paths to choose from. I say choose, but choice was irrelevant. I was merely an observer, a supporter, a holder, a mother. Ultimately, in her case, both paths eventually converged. There was no escape hatch, no way out. Aggressive brain tumours are like that. She could veer one way or the other, but the end was the same. She was dying and death was a certainty, I knew this.

(01.10.2023)
For many months, if not short years, I resisted the word hope. I felt annoyed, unsettled, when others would use it. I wondered, what do you do with such a word, when your child is dying? No longer did it feel like a word to hold, to burnish, a candle to light our way. Instead, it was barbed, cutting, a reminder that there was no future to strive towards.

(22.09.2023)
As I ponder and muse about children, I find myself slipping them into categories in a conceptual timeline of Neve’s life. A guesstimate of age and into my logbook, my classification system, they go, as I view Neve through the lens of health. The fragments of her life, the divisions, the befores and afters. Before cancer. Diagnosis. Illness. Death. And then, at the end, there is absence. Right now, I imagine absence as a small fragment, in relation to a decade of life. In time, I know that absence will grow and eventually overshadow the rest, in its expanse.

(18.09.2023)
Living in the world that we live in, I am surrounded by families. Previously, I didn’t pay much attention to how many children were in a family. Now, however unwittingly, I tally them up. As I do so, I mentally shift them into categories. With categories, come questions.

(09.09.2023)
Neve and food, food and Neve. Entwined, crammed into a decade. From around the middle of her first year, until around the middle of her tenth year. A crowded time of delighting in eating, of her quirks and fastidious preferences, of memories.

In hindsight, a reduced appetite indicated what was to come, even before her cancer diagnosis. Other than chemotherapy also reducing her appetite, most of her eating was filled with gusto and passion. This was a child who lived to eat.

(03.09.2023)
Numbers have always been comforting to me, a logical way to order the world. Yet I could never have imagined how entwined Neve would become, with numbers. Not just that she herself loved numbers, though she did.

When life didn’t make sense to Neve, it was often numbers that brought her comfort. The moment I hear the Numberjacks music, I am brought back to the days around her diagnosis. Her brain was muddled and she was struggling; Numberjacks, on repeat, was the order of the day. Sometimes she would rewind, rewatch the previous 10 seconds, seeking clarity.

(28.08.2023)
Memory used to be a neutral word, not one I put much thought into. It was merely a word, with no emotions attached. How I wish that was still the case.

Since Neve’s diagnosis, I bristle when I hear the word memory. No longer neutral, it is now loaded with pain and sorrow. But it’s not just the pain and sorrow, the trauma of my memories. It’s a feeling of vexation, irritation at the well-meaning voices, “you should, you must, make memories,” they said. But why, I wonder. Why should my focus have been on making memories? It didn’t feel like they, whoever they were, meant the small, everyday memories, the memories we accumulate within a family. Instead, it felt like a deafening roar of “Make Memories.”

(13.08.2023)
I will be taking a break from writing, for the next couple of weeks. We remain a family of six; Neve was born and she lived for a decade and it is ever thus. But the day to day reality is now three daughters and two parents, growing and grieving. We need to regroup, to find ourselves, individually and collectively, as a family of five living beings, a reimagined family.

(06.08.2023)
Whilst I don’t intend to only post in a chronological manner, today I want to tell you about Neve, before her life became so defined by cancer.

Little Neve was born on a frosty Saturday morning in November 2012, at home. I say little, but in fact, she was my heaviest baby. On paper, her birth was very straightforward, however, after a very easy second birth (and a difficult first birth), I found Neve’s birth challenging. I had heard that third babies can be wild cards and Neve embodied this. As hard as her birth felt, once she was here, in my arms, surrounded by love, I relaxed. The contrast of the warm, oxytocin filled room with the cold frost outside enveloped us all. Neve was a happy baby, generous with her smiles, loved by her big sisters.

(30.07.2023)
Neve died three months ago today. A Sunday evening, the 30th of April, just after 7pm. Sunday evenings often feel poignant now, but somehow, the fact that today was also the 30th of the month added to the poignancy. It feels like a moment to take stock.

(27.07.2023)
I suppose it makes sense to introduce ourselves, before I jump in. I am lots of things but here, I am mostly Neve’s mum. Neve died, aged 10, from a brain tumour. She was diagnosed at age 7 and her illness and then death changed her life and our lives, in profound and still unknown ways. I want to tell you her story and our story.