Juggling Olivers
The weight and the sparkle
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.
As we face the actuality of a year without Neve, I am unsure that my subconscious really grasps this truth. Consciously, I know that she has died. In fact, I know that she is dead. But it is hard to quite put this into words and on to paper.
I watched her die. I held her hand, as her body cooled. I sat with her, with her stillness and her silence, for 36 hours. And then we buried her. But still, my brain questions me incessantly, “Where is Neve? How can she be gone?".
A part of me feels as though we have less than a week left before she dies and that we will bury her, again, on the anniversary of her death. I wonder whether it will feel like this every year?
Once or twice, I have let myself imagine a radically different existence, one where I see Neve again. She comes back to life, just for the day. We hug and hold hands and she smiles (and probably also shouts at me). But this fantasy aches and torments. I have not even let myself imagine it long enough to know which Neve it is that I get to see again. I miss her deeply; this imaginary moment hurts too much.
I know, for me, that her death is final. So instead, I pull myself back to within the borders of my reality. In this reality, I will never see my child again. A fragment of my life is and always will be missing.
Within this reality, enveloped within the grief, are memories and laughter. Or is it really that the grief is enveloped within the memories and laughter?
As time marches forwards, moving away from Neve, I am increasingly certain that the memories we made as we lived day to day are the memories that matter now. It is not the big things that sparkle; instead it is the little joys, the laughter, the in jokes, the amusing moments.
There are so many stories; lately, it is the Juggling Olivers who glitter and echo back Neve’s laughter. I forget that not everybody knows these momentous anecdotes, until they look at me quizzically.
“Not sure I heard you correctly, did you say Juggling Olivers?”
This tale actually belongs within the story of those who cared for Neve. Today however, I shall borrow it in order to talk about memories. I have a complicated relationship with the word memories, as I shared in August 2023.
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 found my strength through unearthing a willingness to face and to tolerate the pain of our reality. I realised that I still had choices, even within the story of my child dying. Not choices over whether or not she died, let us be clear. But choices nonetheless. I could anguish over our inability to “make memories” in the conventional sense or I could let go of this narrow goal. Letting this go meant changing my narrative; I needed to choose to focus on the present and on what would bring Neve comfort and joy on that day.
I may be getting ahead of myself; there are people still to meet. I don’t yet have the words to share Neve’s people, her second family, the carers and nurses and professionals who looked after her. It is possible these people will need poetry or lyrics. The vast majority of them were women, second mothers and aunts and more big sisters for Neve. Suffice to say, these women became our world.
You can therefore imagine our surprise when, early one morning in January 2023, a man arrived, as the second carer. We had heard his name before, spoken with admiration and confidence, but today was the first time we met Oliver. He was as wonderful as we had heard, competent, compassionate, funny. However, even good-natured, attentive carers did not always lead to smooth mornings. Neve’s symptoms and distress could come out of nowhere, as they did that morning. Not one to be underestimated, it transpired that Oliver could juggle. It also transpired that Neve loved watching juggling. We had just discovered a very valid form of symptom management. Needless to say, we were all keen for Oliver to return another day.
Neve’s regular community nurses would often bring other nurses along with them, to meet her and us. This was to ensure that these nurses could support us on the out of hours phone line. Meeting, before I called them in the night, by definition because we needed urgent help, made everybody’s life easier.
It wasn’t long before another man came to visit, this time a nurse. To our astonishment, he was also called Oliver. This nurse didn’t look much like Carer Oliver but, without skipping a beat, Neve instructed him to juggle. I jumped in, trying to explain that just because he is called Oliver doesn’t mean he can also juggle.
I need not have intervened; it turned out that Nurse Oliver could in fact juggle. I don’t think Neve was surprised, she had assumed this would be the case. Again, laughter spilled out of her room. I can assure you, a juggling Nurse Oliver is just as entertaining as a juggling Carer Oliver.
It was at this point that I suddenly remembered that Neve’s teaching assistant was also, believe it or not, an Oliver. A heads up text was only polite. He replied to say that whilst he could not juggle, his father was well versed in circus skills, including juggling. A relief. He could learn. The only wise thing to do, really, given his name.
This could have been the end of the story, with enough amusement to keep us going, as we retold the story to others. But, as an over thinker, I wondered, were there more juggling health care professionals called Oliver out there? Could I find them and in the process, bring more joy to Neve, rather than feeling guilty that I was not and could not bring her to the joy?
It was time to use the power of social media for something good. A twitter advert went out.
The engagement was joyous. Olivers up and down the land were tagged. Several more juggling health care professionals called Oliver existed and they seemed delighted to share videos. Presumably they could not have expected that this narrow subset of skills and characteristics would one day be sought after.
It also turned out that people were happy to interpret the guidelines liberally, much to our excitement. In addition to the health care professionals called Oliver who could juggle, we heard from many other people.
Health care professionals who were not Olivers but who could juggle
Health care professionals who were Olivers but could not juggle
Non-health care professionals who were not Olivers and also could not juggle
Nick Cope attempting to juggle olives
Professional jugglers sharing phenomenal juggling skills
A non-health care professional, non-Oliver who could juggle, with toilet rolls and an enormous stuffed tiger
Neve’s friends, reaching out to connect with her
An Oncology PhD student who juggled almost anything and everything; Neve’s favourites were loaves of bread and bottles of vinegar. We eventually managed to unite her with Neve’s laughing fruit and veg and a very special juggling video was created.
The list went on, sparking tangents, connections, and smiles for Neve and those around her, near and far.
I didn’t plan it this way but it turned out to be a superb way to bring Neve happiness. Videos came in and I could show them to her when she was awake and when it suited her. We could rewatch them, pulling them out again and again when distraction was needed. She could dedicate her time to watching her favourites, repeatedly. This allowed a gradual infusion of smiles and laughter, over a longer period of time. All without Neve even having to get out of bed.
What started as a coincidental crossroads between a name, a profession and a skill grew to become a gently unfolding story. A story that brought much laughter, amusement and awe to everybody around Neve but most importantly, to Neve herself. A social media community took a request and amplified it, reaching out beyond my own world, to make a child smile.
This is now imprinted in my mind, visions of her captivated smile, her disbelief. It is as though those little moments, so many of them, embedded themselves deeply and securely in my memory. Like building a habit, the regular small repetitions leading to sustained habit formation. Did the smiles caused by each new video lead to a sustained vision of my child, smiling?
As we move, slowly and quickly, towards the day that will mark a year since Neve’s last breath, my grief feels heavy. Heavy with the weight of exhaustion, on the edge of tears but without the lightness that they might bring. The contrast of juggling and death feels both stark but also proper. Their juxtaposition is all that I have. Neve’s cancer and her eventual death were out of my control. It’s true, the juggling didn’t stop her death. But it still mattered.
Yet again, I am grateful for the honesty, for the clear communication, that allowed us to focus our time and efforts on the things over which we could have control.
The Olivers, the health care professionals, the juggling, these all changed the atmosphere, bringing lightness and moments of laughter. And, let’s be honest, so did the non-health care professionals, non-Olivers who could not juggle.
Perhaps this is my moment to confess that not all juggling brought smiles. Seared in my memory is a morning when Neve was distressed. Her carer and I were doing our best to support her, without much success. Suddenly, Neve announced that I needed to juggle with her current favourite toy. It was perfect; a way to bring her relief. I began, shocked to discover that I could catch the first item. Neve smiled. We all laughed and relaxed. The joy was palpable.
For a moment.
Turns out, it was beginner’s luck. You can probably already guess what happened next. The favourite toy fell to the ground. And broke. Neve’s smile was gone, replaced by tears and disappointment. A true lapse in judgement, on my part. The sorrow was back.
A reminder that as important as mothers and parents are, that we can’t do it alone, without family and community around us. Ideally a community that contains at least a few juggling Olivers.
This was the reality of a dying child; anything could and did change without any notice. Laughter to sorrow, pain to delight.
And so it continues. Stories and visions of Neve smiling, on a foundation of my grief. Or maybe Neve smiling is the foundation, with my grief resting on top? And yet, perhaps they are already starting to become one, a foundation of love and grief. This is what I have, as I grapple with the weight of Neve’s absence. Can these foundations ground and support me?
Her death feels both like it was only yesterday and also, as though she has been gone forever. I sometimes wonder whether she was only a dream. We find pieces of her writing, including a short essay that she wrote, age seven. Exactly four years ago. Finally, evidence that she existed. Real evidence, in the face of all the other evidence that I am surrounded by. Holding her writing, so her, chock full of inventive spelling yet clear and direct, it brought me welcome tears.
It is impossible to separate the joy from the pain, the love from the grief. They coexist, one amplifying the other. The pain and sorrow, eased by the Juggling Olivers. Neve’s delight at the Juggling Olivers, now absent. The little moments that glitter and sparkle, amidst the heaviness of her suffering. This is the child that I miss, the one I paint in words and watercolours.
Pathos and humour - this bit broke me - 'I watched her die. I held her hand, as her body cooled. I sat with her, with her stillness and her silence, for 36 hours. And then we buried her. But still, my brain questions me incessantly, “Where is Neve? How can she be gone?".' - and then you went on to make me smile ... bit like my memory of Neve too xx
Grief is a complicated thing isn't it ? I love the story of the juggling Olivers...who knew ? I often think of similarly funny things that are part of my memory of Jen... all the ways she would keep us organized as a family...so many things trigger memory . She is always there and so is Neve. OX