Marking a 12th birthday
Today marks another birthday; another one without the proprietrix of the day. Last year, I wrote the following two pieces about Neve’s birthday.
As the gap widens between the Neve who might have been, the Neve who was and the Neve who is no longer, so my disorientation intensifies. Twelve is not an insignificant age. The Neve of today is elusive and unknown; I can’t pin her down.
Healthy young child
Seriously unwell seven year old
Terminally ill tween
Dead ten year old
What about
Sick enough to die twelve year old
Or even
Healthy preteen?
I dig through the images in my mind, real and conjured, searching for Neve, the Neve who is the most Neve-like Neve. There is no single Neve, no Neve who represents all the Neves. Powerless to consolidate this child into a single distinct image, I must mourn them all, together and separately.
Unable to choose just one image, it becomes clear that my painting to mark Neve’s 12th birthday will need to be a mingle of Neves. Little Neve, medium Neve, big Neve. In Manganese Violet and Brown Ochre. Variations of Purple and Orange, Neve’s favourite colours. Muted by me.
I have been quiet here on substack lately - life is increasingly busy. Others talk about the second year of grief being hard, sometimes harder than the first year. I wonder whether some of this is life speeding up, sometimes at a frenetic pace, as time moves forward. It is hard to ring fence time to grieve and to love a person who isn’t here, when there is work to be done, bills to pay, dinner to cook and laundry to do.
Sometimes I wish time might stand still, allowing me to remain in those precious days around Neve’s death, when her skin was still warm and her voice continued to reverberate in my mind. I remind myself that the dulled echos of her existence are still here, interwoven among the vitality of the voices of her sisters. Life is full of exams, birthday parties, playdates, sudden school closures, and plans for the future, all embedded in a world of exuberance, apprehension and sadness.
I am confident that there are more paintings and more words to come, in time. My list of topics to ponder and share continues to grow, as does the list of images to be painted. I have temporarily suspended the paid subscription aspect of my substack, until I can assure myself that I am writing more consistently. Thank you to all who continue to read.
In the meantime, Neve’s ripples continue, in other ways. Perhaps her birthday is a moment to stop and reflect on what she has brought to the world, over this past year. Some of the ripples are quiet but hopefully they run deep and their impact will be profound. I have shared Neve’s story, with varying degrees of detail and focus, with numerous groups, including:
Doctors who are starting their specialist training in Paediatric Palliative Care
Third year children’s nurses, within their Complex Care module
First year medical students, in their second week of medical school, within their Social and Ethical Context of Health and Illness module
A working group looking at the practices of life writing at the edges of life
Health professionals who are coordinating the creation of a network to ensure that more children have access to the 24/7 palliative care that they need, when they need it
At a festival, intertwined with art and words and love and grief
To groups of multi-disciplinary groups palliative care professionals, including from health, social care and education
Neve’s voice has been at the table in various research groups, including those focusing on both cancer and palliative care research. Of course, it's not really Neve’s voice; it is my interpretation of her thoughts and wishes. I hope my representation of her voice is a good enough approximation - I aim to channel her energy and honesty. Its influence and what mattered to Neve have been part of the decision making in an interview panel for the CEO of a national charity.
Speaking of voice, it was an incredible honour to be interviewed, alongside Neve’s Dr Emily, about Neve and pain within palliative care on BBC Radio 4’s The World at One. Not what I expected when I woke up on election day (in the UK)!
The response to the publication of my article in The Telegraph Magazine has been immense. It is painfully clear how much people want to talk about illness, dying, and death. Many people wrote to me to share their stories of raw grief and trauma. I was honoured to know that Neve’s story may have brought comfort and eased some of their sorrow and loneliness. For those who can’t read behind the paywall, you can read this story on my substack too.
The painting that I painted, to mark a year since Neve’s death, was selected for an art exhibition within a museum. To top it off, my painting won a Judges special recognition award. I reckon Neve would have been proud.
Closer to home, Neve’s beloved primary school has begun the process of creating Neve’s Garden; the first volunteer work party was a poignant day. Memories of Neve, an abundance of mud and leaves and even some sunshine made an appearance. Discovering a path of buried concrete dinosaur footprints was a highlight of our morning. I could not help but smile to myself, picturing Neve’s bemusement at this excavation and then at hearing the story of when they were laid, two decades ago. Surely she would have launched into A round of applause for the Dinosaurs and then sung it on repeat. I was reminded of the importance of continuity of care, whether that is within health care, social care or, in this case, education.
Given that most of Neve’s birthdays will have ended with a Nick Cope song, this seems like the moment to bring this to a close.
To mark this day, I have compiled a list of interesting links to share, in a second post. I hope some of them make you think or that they resonate in some way.
Such beautiful and thought provoking writing. I have been thinking about you.x