Update - this article was published in The Telegraph Magazine on the 3rd August, 2024.

This week, I am fundraising for the Oxford Health Charity, with the goal of buying cooling equipment for the local NHS Community Children’s Nursing Team. Today’s story is part of this endeavour.

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As I reflect back on Neve’s final days and weeks, my overriding recollection is of a pervasive precariousness. So much uncertainty, pain, loss of dignity, and complex and acute needs. All of this, and more, on the back of three years of illness and emotional trauma. I was on edge and hyper-vigilant, prepared and ready. 

Ready for her to get up and walk into the kitchen,
Or to choke on crusty bread or a toasted almond,
Ready for her to suddenly rise and look under the bed for a favourite toy,
Or to cry out in pain, gripping her shoulder or her head,
Ready for her to want to play Uno,
Or to have a seizure, one that wouldn’t stop,
Ready for her to persevere in her aim of eating more smoked salmon,
Or to be overcome with secretions, out of the blue,
Ready for her to insist on going on a bike ride,
Or to stop breathing.

I was adamant that Neve be supported to die as comfortably as possible. My hope was that a gentle death could protect her from more suffering and sorrow. Neve’s doctors had described the prospect of an unconscious child, settled and comfortable, slowly (but not too slowly) dying peacefully, over a number of days or weeks. Perhaps this would give us the time and space to gently prepare ourselves. 

Could a settled, safely unconscious Neve allow for a different way to be present with her?

I had envisaged our family ensconced around her bed, reading, playing Uno, snuggling together. A period of sitting vigil perhaps; a tender way to let go. So far, none of this had really been possible. Even when fast asleep, her rest was precarious and precious; we strove to avoid interrupting it.

Somehow, this promise of a gentle transition (that was never a promise) seemed, in the context of a dying child, like a yearned-for gift. A way to ease her traumatised family into a life without Neve. 

To safeguard a calm death, I needed to understand how she could die. I knew that some peoples’ final hours could include all manner of pain and agitation, secretions and blood. Having exceptional palliative care meant that Neve’s chances of dying like this were considerably lessened. However, as Neve generally didn’t follow guidelines or expectations, nothing was guaranteed. As her mother, I wanted to be alongside her, guiding and accompanying her for as long as I could.

Unsurprisingly for all who knew Neve, this is not what happened. 

Neve was very briefly unconscious; it could have been an afternoon nap. Though she was clearly sick enough to die, we had seen her sicker. As such, it didn’t stand out as being a harbinger of anything in particular.

Today’s story really begins with Neve’s final breath, which, whilst very much anticipated by all who knew her, was absolutely unexpected when it came to be. It turns out that an extremely ill child with an aggressive brain tumour, who has nearly died on many previous occasions can still convince you that she is invincible. Somehow, Neve had persuaded us that she wouldn’t actually die. And yet, die she did, with very little warning. 

A final gasping breath and then silence.

Alongside the absolute shock was a sense of relief and solace; the uncertainty was over.

Neve had been settled, comfortable and unconscious as she died. I don’t believe she suffered, as she took that final breath. 

She had not choked on secretions, crusty bread or whole nuts.
She had not bled or had a distressing seizure.
Her possible other cancer had not broken through her skin.
She had not cried out in pain, in her final hours.
She was not alone.

Neve died to the sounds of a gentle nurse reading her a beloved book: If you give a mouse a cookie. If you have to die after a decade of life and if you have suffered like Neve, then this was a safe and good death.

Despite my utter shock and disbelief, Neve’s death was the beginning of my body starting the very long process of coming down from a place of hyper-vigilance. A process that is still and may always be ongoing. But this was the start – a bittersweet realisation, to be sure.

Neve’s final breath ushered in a now treasured 40 hours, a time of gentle healing and tender transitions. 

Despite my usual tendency to plan ahead, this day had always felt utterly impossible to imagine. As such, I had not done much research or decision making for the time after she died. Yet her death brought decisions to be made. 

Neve, always one to layer complexity upon complexity, had died on the Sunday evening of a Bank Holiday weekend. Our intention of burying her quickly was not to be. We were discovering that, for all the DIY this country does on Bank Holidays, digging graves is not something that happens on a Bank Holiday Monday.

We needed to decide what to do next, where we wanted Neve to go, until she could be buried. This decision didn’t feel particularly significant at the time. Now, over a year later, I feel dread when I imagine us making any other choice than the one we made. 

Of overriding importance to us was that Neve should never be alone. We wanted her to remain surrounded by those who loved her, until she was buried. It was clear that this would be complicated in a funeral home.

Our hospice was certainly tempting; it was local, we knew them well and we could be with Neve in their cool room. However, somehow, this didn’t feel right for us as a family; it was not our home. Moving ourselves there would have altered the dynamics significantly. An excellent backup option but not our preference.

In the end, we decided to keep Neve at home, using the hospice’s cool blanket. This seemed logical and sensible, without seeming profound or life-changing. It felt right to keep it simple, with us remaining in our home, together as a family. The minimisation of big changes and transitions was compelling. How would I know what clothes to pack, which shoes to bring? My child had just died and this overwhelmed all my decision-making.

Only in hindsight did I realise that this was a sliding door moment. What was might not have been, had we opted for something different. It was fortuitous that in the absence of any real planning or informed decision making, deciding to keep Neve at home turned out to be an unequivocally sound decision. 

Adding to my relief was the arrival of the Lead of the local NHS community palliative care team. This cherished nurse was so utterly fundamental to almost everything that had taken place over the previous two and a half years. She was a pillar of strength, a guide and an anchor. Her gentle wisdom and compassion were matched by her extensive experience. Everybody on Neve’s very large team looked to her for guidance. 

As the professionals around us set about transforming Neve’s room into a vigil space and a haven for us all, we sat with Neve, beginning our transition from six to five. The details here mostly belong to us as a family and to my role as mother of living children. We held each other and there were tears, though none of them were mine. I continued onwards, fuelled by adrenaline, hyper-vigilance and shock. Family dynamics endured; we were all who we are, even in the minutes and the hours after Neve’s final breath. 

The poignancy was beginning; it felt so right to keep her here with us, surrounded by her teddies and her family. She was born at home and she died at home. This is where she belonged, until it was time for the next transition. 

Similar to my experience of home birth, family life continues through and around a death at home. A nurse and a friend, along with one of Neve’s sisters, came together to care for Neve, to remove her nail polish and to change her into her matching sisters’ pyjamas. They cared for her as one cares for a tiny baby: with love, tenderness, compassion, and connection. Neve was then safely tucked up into her bed, with the cooling blanket covering her and her duvet on top of that. 

That evening, teenagers came round and did what teenagers do. A palliative care paediatrician entertained a big sister and a little sister while nurses and our friends came and went, and finally, a small child went to bed very late. At long last, almost everybody else was in bed and the house was still.

Up until then, my ‘mother to living children’ self had by definition needed to keep going, focusing on my newly bereaved children. It was only now that I could be at Neve’s side, solely as a newly bereaved mother and begin to process what had just happened, five hours earlier. Neve had died. The quiet of that late evening provided a gentle space in which to just be Neve’s mother. 

I settled on her bed, stroking her face and hair, wondering how it was possible that this child – the un-sedatable one, the one who miraculously rallied through each previous near death moment – lay here, so very still. I held Neve’s hand, feeling the familiar weight of a sleeping child. Yet this was not the warm hand of a gently dozing daughter. Neve’s hands were cold, as were her arms and legs and her face. A gut-wrenching reminder that she really had died. 

As I moved my hand to her chest, I was surprised to feel a residual warmth. Remnants of Neve’s heat remained! 

Thinking ahead to the next morning, I knew that her warmth would be gone after a night under the cool blanket. This understanding unfastened the door to my tears. Keeping my hand on her warm chest, I lay my head beside her and cried. I mourned the loss of my vibrant child, so full of heat and vitality. I had no choice but to savour and then let go of her final warmth, to say goodbye.

Before Neve’s death, on the nights when we didn’t have help, I had been sleeping on a mattress on the floor beside her. It was unthinkable for Neve to be alone; I needed to be there, to care and to be with her. After her death, it was her father who slept beside her, for those final two nights in her own bed.

In the morning, before her sisters awoke, I tiptoed back downstairs and into Neve’s room. I yearned to feel her peace and the silence, before the day began. Other than knowing that we would not bury Neve on this day, I had no idea what to expect. I was conscious of a sense of calm and gratitude, knowing that this was a day to slow down. Up until that point, life had been full and chaotic, juggling family life, yet always ready for an acute need. Like her birth, Neve’s death allowed everything else to fade away. I let out a sigh of relief. Whatever would come next, on this day the world would stop, just briefly.

As I sat again on Neve’s bed and placed my hand on her chest, I was shocked to still feel a soft warmth. There was no ambiguity; unlike the rest of her body, this was not cold skin. 

My four daughters' warm, soft skin on the palm of my hand has always been a treasured sensation. To be given just one more moment of viscerally knowing Neve’s warmth and vitality, after her death, was wondrous and breathtaking. I like to think that she was so hot blooded and warm hearted that her core and her heart retained its warmth and energy just that bit longer. The contrast of the sorrow of her death highlighted the magnificence and the beauty of that moment.

And then it was time for the day to begin. 

Because we were very clear that Neve was never to be alone, her room became the heart of our house. A quiet vigil space, tucked in amongst the lively hubbub of a family home. We invited everybody and anybody who had known Neve to come and say goodbye to her. 

Some of Neve’s social care carers came and brushed her mop of wild curly hair one last time. Other carers had been with her the day before her death, when her wit had slipped through her exhaustion. They opted to hold that spirited visit as their final memory of Neve and her sparkle. This all felt right; it was clear that everybody was different. What mattered was that the people who had cared for her were given the opportunity to say goodbye.

Nurses visited from the hospice, the community team and the agencies. I recall one nurse knocking on the door, with tears in her eyes and flowers in her hands. She worried that she might face agency repercussions for visiting. She had cared for Neve for two years and they were deeply fond of each other; how could anybody suggest she stay away? Surely it was only human that she would want to say goodbye to this child, whose nails she had kept beautifully painted? Furthermore, her gentle weeping, which was both fully professional and fully human, was consoling and comforting to me. These tears told me that Neve was loved and would not be forgotten. I’m not sure I can ask for more than that, as a bereaved mother. 

Two more nurses came, in response to my text inviting them. They arrived at lunchtime and sat with Neve, allowing us to eat together as a fragile family. Through her final years, we had supported and encouraged Neve to build relationships with others, without us. She was growing up and this was significant; a gentle way to guide and nurture her independence, even as she grew more dependent. The relationships that she built with these two nurses were precious and treasured. On this day, they cared for her, just as they had always done when she was alive. 

A wonderful surprise came in the form of one of Neve’s oncology doctors; we had not seen her in years. Initially, I did not recognize her as she stood on my doorstep; we had only ever known her in a mask, scrubs and crocs. Last time I had seen her was in late 2020, when she came, with tears in her eyes, to visit us in Intensive Care. I wondered whether she knew that I still remembered those precious tears, silent and unobtrusive but a clear marker of the impact of my child. Again, like then, her visit on this precious day was a solace and a gift. It struck me again how fond of her we were, despite not previously having seen her lower face or mouth. Her eyes did all the smiling. Even with masks, connections were made and compassionate relationships built.

It was only in hindsight that I had regrets about this day. I was, understandably, so caught up in the present that I had not thought to officially invite all the professionals who supported Neve. Though there was a plan for telling our friends, family and community, there was no plan for how to tell the professionals. Many of these people had become her family, her world. I knew that professionals and others often find it healing to be able to say goodbye to the children they care for, when they die. I feel sorrow that the system is not set up to facilitate these goodbyes and that at times, it can even impose barriers to doing exactly this. We are all as human as each other; saying goodbye is a fundamental part of being human. Neve’s death meant that I never again saw most of the carers and nurses who had enriched our lives so tenderly and profoundly. There were no transitions in place to ease these painful losses. 

Close family flew in from Canada and drove in from around the UK. By the end of these 40 hours, our parents, our sisters, a brother-in-law and their children were all with us.

Our friends came and most poignantly, so did some of Neve’s, with their parents. Whilst not all of her friends chose to enter her room, I knew how special it was that these children were being given the opportunity to say goodbye, either directly or through their parents. This took bravery on everybody’s part. These goodbyes, in whatever way they came, were likely to help these children make sense of their grief in the years to come. I felt relieved that all of these children were well supported by emotionally intune parents. I didn't need to add them to my list of people to worry about. 

Neve remained at the heart of our home, our family and our community. People came to drop off food, to say hello and hug us, to say goodbye to Neve, to tell us and show us that they cared. There was laughter and there were tears, a mix of emotions, both in the quiet and warmth of Neve’s room and the rest of the house. The relief at having remained at home was profound. Not only did it mean that we could welcome as many people as we wanted to say goodbye to Neve, it also meant that we could be with Neve in the warmth. It felt significant that Neve’s room was warm, just as a birth room is usually kept comfortably warm after a birth. Would we have felt the same easement and solace, had she been in a cool room, such as the one at our hospice? I suspect not; instead I imagine shivers and stiff muscles, jackets and more numbness. 

That evening, we said our final goodnights to Neve, knowing that tomorrow she would be on her way. Her father slept by her side, watching over her, holding her in the only way left to us.

Morning came and with it the knowledge that a big transition was coming. By this point, Neve’s face had changed and she no longer looked like the vibrant, hot-blooded child that she had been. This was a gradual process over these 40 hours and by the Tuesday morning, it felt right, as right as it could, to know that we were soon burying her. Her physical changes had eased us into this knowledge. Her home was no longer the place for her; she had somewhere else to be. Her colour and her cold skin were a palpable reminder of this.

A dear friend was to accompany Neve to the funeral home, where close friends would be ready to bathe and prepare her for burial. She would be in good hands; we needed her to be with people who knew her and her love of freddos and her family. 

My stomach was in knots, waiting for the funeral home staff to arrive, unsure whether to wish this process forward or to hold Neve in her bed, in our home, for just a bit longer. 

How could I let her go?
How could I keep her here?

I didn’t feel ready but would I ever feel ready? 

As her mother, I had to be ready to let her go. My tears returned; it could not possibly feel more visceral, this act of letting my child go, on her way to be buried. 

The funeral home staff arrived and it was time. I stroked her cheek and held her hand one last time, kissing her and telling her how loved she was, how much I loved her. What is there to say or do when you know you will never hold your child again? Tears streamed down my face; a rarity but so welcome. 

Only when we were ready, whatever that meant, did the undertakers gently transfer Neve from her bed to a stretcher. This was a transition I knew; paramedics had often moved her like this when she was alive. Unlike then, for this final transfer, Neve was still and quiet. 

We stood on the drive, a gathering of people who loved Neve. We held each other, tears flowing, disbelief and sorrow etched on our faces. I have since learnt that my other daughters were in the embrace of my sister, just as they had been when I gave birth to Neve, a decade earlier in a house around the corner. 

We watched them gently transfer Neve into the black ambulance and then our beloved friend climbed in with her. I look back now and wonder how we did it. How did we let her go? But what choice did we have? Just as her birth was part of life, so was her death. She had other places to be; a precious place to rest. 

And they drove off, away from our home and our family, in preparation for the next part of her journey. Behind them, they left an empty bedroom, heavy with Neve’s absence and a tear-stained, heartbroken family, on edge. The precariousness of Neve’s final years was replaced by a quiet sorrow. Those 40 hours eased us into the beginning of a life without Neve.

Thank you for any support you can give, to ensure that other families have the same choices that we had. Please do share this post and/or my Just Giving page widely.

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Take me to the fundraiser