Reflections on a year

Toddler Neve, painted in Stoneground Paint watercolours. Painting by Emily Tammam.

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

I see pictures of Neve and a part of me wonders who she is. I recall my newborn babies, feeling both that these tiny people were incredibly familiar and known to me but also, that they were little strangers, unrecognisable as my children. As I cared and loved them, so they grew familiar to me. It was the doing mothering that turned me into their mother.

I wonder whether Neve’s familiarity will dissipate, as time marches on. I am no longer mothering her in the way that I was; will this chip away at our intimacy?

I am finding that, through my painting, the image of little Neve is becoming more familiar again. When she was ill and then after she died, this small child felt like a stranger. But now, I am revisiting her again.

It is now the older Neve, the unwell Neve, who could be a figment of my imagination. Pictures of her appear on my phone and I am transported back to the feelings that I had when she was first born. Somebody both familiar but simultaneously, a stranger.

My mind is brimming with these thoughts, as we pass the point that marks a year since the anniversary of Neve’s death. I wonder what to call this day. Logic tells me that if the day of her birth was her birthday, then the day of her death would be her deathday. Spell check suggests death day or death-day. Wikipedia suggests death anniversary, however, anniversary somehow conjures up a positive day, a celebration, even a jubilee, according to the dictionary. I am uncertain any of this resonates.

In the lead up to this day that does not quite have a name, I was unsure what to expect. Some people shared that they found this iteration, the one that marks the first year, to be a difficult day. Yet others suggested that the lead up to the day was painful but the day itself was manageable. Some felt relieved that the first year, full of firsts, was done. Others found the second year even harder.

Where does any of this leave me? Should I expect a painful day? A day of relief? A day to mark the beginning of more pain? An ok day?

As the day drew closer, my mind was bustling and on edge. I continued to run through my recollections of the year before, of Neve’s final days that we did not expect to be her final days. I chuckle at the memories of some of her last words, on her second last day alive. I didn’t hear either of these humorous pronouncements; they were relayed to me by the health professionals who received them. Strangely, this does not seem to matter, they still make me smile.

I remember Neve’s cooling arms and legs, her deepening unconsciousness, the visit from the doctor and then Neve’s prompt awakening, as she unexpectedly sat up and made her doctor laugh. Clearly dying was not on her schedule for that day, despite all the forewarning signs that I had carefully committed to memory. Was it possible to feel any more deeply that I was crying wolf? My emotional rollercoaster was particularly volatile and chaotic that weekend.

The last words I heard myself from Neve were early in the morning on the day she died. I didn’t note them down, unaware that I might wonder what exactly she had said. I comfort myself by watching the final awake video that I have of her, from four days before her death. It perplexes me to think that she would be dead within days. A part of her looks so lively and her wit and sparkle are still very much in evidence.

It’s only when I step back and view the video through the eyes of somebody who has not watched their child gradually deteriorate over a couple of years that I realise how desperately ill she really was. Looking back at other videos, I see how exhausted she was, struggling so hard to hold her head up and keep her eyes open. Did I recognise this at the time or was I so enmeshed in keeping going that I didn’t spot what was happening right in front of me? Neve says goodbye at the end of the final awake video, in a way that was not significant at the time but now feels utterly poignant. How could our lives have changed so dramatically, in the space of this year?

In the days before her first deathday, I had more shoulder and back pain than usual. I note the grief in my body. I think back to those dates, the year before. They were days full of shoulder pain for Neve, though I am understanding also that hindsight clarifies reality. Or maybe distance burns off the haze and I am seeing with new lucidity?

There was also laughter and joy. Two days before she died, Neve enjoyed her beloved crusty bread and smoked salmon, despite her shoulder pain and exhaustion. She made us all laugh, as she uttered amusing observations and entertaining remarks, through the fog of her illness. A weekend of intensity, I suppose. Great pain and loss of dignity, side by side with joyful laughter and deep connection. The moments that stand out are the extremes, yet I am certain that much of it was mundane and even wearisome.

Three weeks ago, on Neve’s first death day, we went for Thai food without our other children. It was the first properly sunny day of the year. As I sat there, in the sun, eating, I felt safe. Within that safety was space for vulnerability, for heightened sensitivity and awareness.

The sun’s warmth and light were exceptionally pure and bright; I felt as though I had never seen such a beautiful sun. I savoured the taste of the food, certain that these were the most incredible flavours I had ever tasted, the most perfectly seasoned food I had eaten. We wandered through a beautiful bookstore and I asked myself whether there had ever been such a fabulous selection of books, in such a calm and peaceful shop. Then on to coffee, again, in the sun. The temperature, the flavour, the smell, everything about the coffee was just right. Whilst tears didn’t flow then, I felt the weight and the lightness of my emotions. 

Life was so very beautiful in those moments. I understood that it was not a coincidence that there was such intense beauty and vulnerability surrounding me on that day. Neve’s death highlighted the radiance of that afternoon. The quiet and safety allowed me to relax into my own vulnerabilities and grief. The beauty around me is helping me see the grief in my loss of her. In those quiet moments, I was purely her bereaved mother.

I wondered to myself whether the sunshine was Neve’s way of letting us know that she approved of our plans for the day. I find it puzzling how I really do not believe that Neve is out there, sending me messages. Yet, I find myself able to see messages from her in almost anything, even though I don’t consciously believe they come from her. Neve’s death has unearthed my brain’s ability to hold opposing thoughts and feelings with ease and comfort.

Later, we went to the cemetery, as a family. I was back to being a mother of brilliantly alive children; my vulnerability needed to be covered and tucked away safely. Though the cemetery was the logical place to find my grief, this too was mostly tucked away. Yet I was able to find a small crack in my steadiness, a fissure in which my grief could briefly emerge. As the others returned to the car, I stayed behind for an extra moment. It was here, when I could set down my mothering-to-alive-children cloak and allow my vulnerability to surface, briefly, that my tears emerged. There were no floods of tears, no sobbing, no setting down the full weight of my grief. But there was meaningful solace at my capacity to cry at my child’s grave.

Like marking a birthday after a death, I was unsure what would be a fitting way to mark Neve’s death day with her sisters. A new tradition was needed, something that we could all do, no matter where we found ourselves in the future. And so it was ice cream, from a fancy ice cream parlour. Two scoops, to differentiate it from the customary one scoop.

As we sat there together, five where there was once six, I wondered what Neve would think. Was there something callous about going for ice cream, something that Neve adored, without her, to mark her death? She would have felt so left out. And yet, she is not here. Marking the day with something unpleasant would also not feel appropriate, particularly for her sisters. I am learning to sit with the feelings of guilt that surface when we have joy as a fractionated family. The sun reminded me that perhaps this was a good enough plan.

That night, as I got ready for bed, I was shocked to discover that my legs were covered in large itchy welts. Presumably I had been repeatedly bitten by something, when I sat on the grass at the cemetery. Was this a last minute message from Neve? A reminder that even though the sun was shining, that really, she is heartbroken to not be with us?

Somehow I feel comforted by this; this is the Neve that I know. Desperate to be alive, with her family, enjoying ice cream. She was not a child who was done living, even though she managed to cram a lifetime into a decade. I wish she could have known that her ripples will continue, that whilst we can’t share our ice cream with her, she is present in all the single and double scoops of ice cream and in all the freddos.

Selection of paintings of Neve, from toddler to ten year old. All paintings by Emily Tammam.