In the beginning

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.

Over the coming years, she grew into a generally happy toddler who very clearly knew her own mind. She spent time with a beloved friend, either at our house or their house, while the friend’s mother and I took turns working and looking after the toddlers. Neve and her friend went to playgroup together, then to the nursery at school before finally joining the school properly, in reception. All the way until the end of her life, Neve would tell me that this friend, who she met as a tiny newborn, was one of her very best friends ever. She had a wider group of friends, who were really the most perceptive, emotionally wise children you could imagine. They continued to be her friend and to visit her, until her death.

Neve loved school and her teachers, she loved playing in the park, swimming, cycling and playing with her sisters. She has always been a curious child, a determined child, a loving child. As the years went by, Neve found life harder, including transitions, social situations and general mental health. As there is neurodiversity in our family, I assumed that Neve might eventually need an assessment and more support.

Neve was lucky to attend our wonderful local school, with fantastic teachers and TAs, good friends and a warm and supportive community. Despite her increasing challenges, she continued to have fun, to laugh her deep and contagious laugh, to learn, to enjoy time with her friends. Neve was active, awaiting a place on the local city athletics club when she would turn eight and thriving in swimming lessons. She was fierce and feisty but also deeply protective of those she loved. She was learning to play the piano and to love reading.

Though she changed so much in her final years, all of these features remained present, even though their specifics changed. The last quarter of her life was still filled with friends, laughter, activity, piano and books, even amidst the sorrow and anguish.

This morning, as I ran, I listened to this piercingly eloquent podcast. I had previously read Georgina’s book, If Not For You, when it first came out, when I knew that Neve was dying and it was incredibly beautiful and heartbreaking.

So much resonated within the podcast and I attempted to make mental notes of countless powerful words and quotes, as I ran. But this was all obliterated when I heard the penultimate question. “What would you do with just one day with your person?” Previously, I have not really felt able to wish to have Neve back, because I felt so worried about her pain and suffering and anguish and the potential for more. But this question, this worked. I could go here.

“What would I do with just one day with Neve?”

Which Neve am I spending the day with?

She changed so much over the years, as she grew and developed, like children do. And then she became ill and she changed so much again. In her final years, she simultaneously lost skills and developed skills, she slipped back into a younger child, whilst also growing into a preteen.

How would I decide what to do with just one day with Neve?

If I am allowed magical thinking, I might pick and choose from the second half of her life. The same themes were always important to Neve, even if the details changed over time. People, food, fun, learning, adventure. Never mind if this epic day was actually way too much for Neve, let’s magically ignore the overwhelm, the sensory overload, the exhaustion. Let’s leave behind the sibling rivalry, the stresses of life, particularly when you have brain cancer. These were all very present in her life and made her who she was, but not today, not on this one day together. Today, we all get along!

Lets start with the morning in school, she did love school and her fantastic teachers and TA. Then to the park on the way home, with her friends, on the climbing frame, coveting and eating other people’s snacks as though I had brought none, cycling around, her playing in the trees with her friends.

We would then visit our local hospice, for a ride on the tractor in the garden, swimming in the hydrotherapy pool (yes, she swam, never mind that it was small and she could barely walk), more snacks, including excessive amounts of smoked salmon (feeders of smoked salmon were not the same as budget holders, unlike at home) and freddos, love and laughter with her beloved nurses and carers and doctors? I would probably see very little of this, because Neve would ask me, “when are you leaving?” and that would be my cue to go away. This only underlined how safe and secure she felt at the hospice. She was ready to grow and to have adventures of her own, without her mother always there.

Then finally, home, to spend time with more dearly loved carers and nurses and most importantly, her family. The day would be interspersed with poo bingo, some uno, a game or two of 3D snakes and ladders, certainly some noughts and crosses. Neve would win, obviously, unless she occasionally took pity on her competition. We would eat more food, some of my fresh bread, maybe some tahini and date syrup, possibly an egg and certainly more smoked salmon. Neve would snuggle in bed with her sisters to watch tv or listen to Nick Cope.

Finally, I would lie down with her and we would cuddle up (never mind that she would not stay nestled in my arms for long and would soon ask for more space). Magda’s voice and the alternating pressure mattress would soothe us both to sleep.