Memories of Neve

In everything that is and in everything that isn’t

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.”

I doubt it was true but I often felt like we were the only family not taking our dying child on a road trip through Europe. Surely we should have been going on big expeditions, seeing sights, adventures, family bonding, cramming a lifetime of living into a few months? Every mention of making memories was a sledgehammer of guilt, of not being a good enough mother to my dying child.

Not only were we not going on big adventures, Neve wasn’t even leaving her bed, let alone the house. In fact, the memories that we were making were mostly traumatic and painful. Did people not understand what they were saying when they suggested “making memories”?

I am reminded of the essence of a conversation with a health care professional who supported families when children were dying. She noticed the pain and the pressure that families felt, when they were told to make memories. She wished people would stop saying this to families. I finally felt seen and heard; it wasn’t just me struggling with this well-intentioned concept. She probably has no idea the comfort that this conversation gave me. 

It is only now, 120 days after Neve’s death, that I finally realise that it’s not the big memories that mean as much to me. My guilt wasn’t needed. I think of Neve constantly, she is everywhere in my mind, everything reminds me of her. She is in everything that is and in everything that isn’t. I wish to reclaim the word memory, to disconnect it from the idea of “Making Memories” and to return it to its simple definition, to what it was, before I joined the cancer world. I didn’t need to make memories with Neve; simply being her mother and loving and caring for her means I have gathered a wealth of memories.

There is an often repeated idea, that others don’t want to bring up a loved one who has died, lest they remind the bereaved of their person and their death. Those who are grieving tend to say that this is irrelevant, that they are constantly reminded of and thinking about their loved one.

It took Neve’s death for me to really understand this. I don’t need others to worry about reminding me of Neve, because I am already always thinking about her. I don’t think I could have imagined this, before I was here. But here I am and here is Neve, my constant companion, rarely out of mind. Sometimes I smile, other times it’s an ache in my stomach, a tightness in my chest, a tear in my eye, a heaviness.

Though my brain seems unable to fully grasp what has happened, which currently shields me from the anguish that I know is buried somewhere, it doesn’t stop me from holding Neve at the forefront of my mind. I love it when people talk to me about Neve. When people tell me that they thought about her, when they ask me about her. I am already musing about her and knowing that you are too reassures me that she won’t be forgotten, that the ripples of her life will continue evermore.

Last week, I decided to keep track of what reminded me of Neve, over a couple of days. I intended to just tell you about what brought her to mind, but as ever, each reminder connects to a story. I can’t help but want to share Neve and her stories with you. Perhaps all children are so full of life, as to provide story after story? But knowing there won’t be new Neve stories makes each one that I do have so precious and so important to share. As she died, I told her I would tell the world about her. Her life overflows and spills out, in everything that I say and do and think. 

My next piece of writing will be a window into my brain, over those couple of days.