Hope at the edge

A pause on the cusp of life and death

A note to my readers

Today’s writing is a revisitation and republication of a piece of writing from October 2023. It is a followup up to Reclaiming hope, which I republished in October 2024.

Reclaiming hope

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Before I faced my child’s possibly imminent death, I could not have imagined the nuances of hope in once unimaginable moments. 

These moments, precise and inconceivable, were situated on the borders of life and death, at the cusp. At this critical threshold, there was a crossroads of sorts, two paths to choose from. I say choose, but choice was irrelevant. I was purely an observer, a supporter, a holder, a mother.

Sooner or later, in Neve’s case at least, both paths would eventually converge. There was no escape hatch, no way out. She could and did veer one way or the other, but the end was the same. Aggressive brain tumours are like that. She was dying and death was a certainty. This I knew. 

Neve had a habit of becoming critically ill and deteriorating dramatically. The first time this happened, a move to our hospice felt right. However, as time went on, for a multitude of reasons, staying home with Neve began to feel right. Doctors and nurses would pop round, gentle, compassionate words would be spoken, carers would hold her tenderly.

Neve’s hospital bed, a glorious addition to her life, would be raised, perceptibly higher than usual. A hushed busyness would envelope her room and our house. The atmosphere, usually invisible, would change and become palpable. I would feel everything: fear, overwhelm, hope, anxiety, regret, acceptance, love. I was both weightless and laden, numb and overwhelmed with thoughts and emotions. Death could be spotted on the horizon.

And then, Neve would rally - a restoration of life, before our eyes. Death was pushed aside, replaced by hunger and energy and walking and tractors and life. Her bed would be returned to its usual low position; a subtle but distinct restoration of normality. The change was profound, leaving us all emotionally wrung out, exhausted and reeling in shock. I say all but I don’t know that Neve was always aware - she was often safely unconscious.

It was in between these watersheds, the deterioration and then the rally, that there stood a space. A liminal space. Reality was breached, a fissure appearing. A pause, with both life and death skirting its edges, her edges. Within this juncture, time stood still, simultaneously slowing down and speeding up. 

Hope was here, within this juncture, yet more entangled than ever I could have imagined. I would sit by Neve’s side and notice my thoughts. My mind was in turmoil, questioning and cross-examining these hopes.

I was watching, a witness to suffering - prolonged suffering in fact. It was unclear to me what I should be hoping for. Would I ever hear Neve say another word? Her hands, so warm and comforting, clasped within mine. Would she ever open her eyes again? Her smile, a deeply embedded memory, an elixir for all who experienced it. Would she ever grip my hand again? Her soft hands, so strong and spirited.

Hope was nuanced and contradictory, yet replete with meaning.

To even begin to comprehend, we need to cast ourselves back in time.

I want to invite you to come and to be with me at Neve’s bedside. Here, squeeze yourself into this quiet space, alongside me. Stand behind me if that works. Or, better yet, sit here beside me. You can put your hand on my arm, if you want. Human contact is your gift to me, especially at a time like this. Settle in with me, as we watch Neve. 

You can see that she isn’t well. Her breathing is loud, bubbly, irregular. She is deeply asleep, probably unconscious. She is settled and comfortable; she isn’t in pain right now. Her face is pale, sometimes a bit dusky.

You can hold her hand if you want. She won’t squeeze your fingers now, she is too unwell. Mind you, she used to. When talking was too much for her, we communicated by hand squeezes.
Neve, squeeze my hand if something hurts.
Squeeze my hand if it’s your head that hurts.
Squeeze my hand if it's your shoulder that hurts.

My hope is that if she has a hand in hers, she can tell us if something isn’t right. You might wonder about my use of the phrase, something isn’t right. Clearly something is not right - Neve is dying. And yet, I have accepted this reality. What I can’t accept is needless suffering that we can palliate. This hope is a visceral hope - my whole being hopes that she can squeeze a hand if she needs to. I have to believe that this is true, that Neve can convey to us if she is in pain or distressed. I am hopeful that she knows we are here and that she isn’t alone. I hope on some level, she can feel us with her, accompanying her as far as we possibly can.

What do you think I should be hoping for? What do you hope, as you sit here with me?

Let me tell you the thoughts that agitate through my mind, that jostle for emotive supremacy. Then you can tell me what hope means to you, as we sit here, holding, physically and emotionally, my dying child. 

I hope for one more smile. I hope for more laughter, more hugs and cuddles. I hope for more wit and wise jokes and fun with carers and nurses, with sisters and friends. I hope to see those eyes flicker open, even just one more time, to see recognition within them. I hope for another eye roll, for a glint of mischief, for the crinkles at the edges of her eyes, as she grins. I hope for just a little bit more time. I am not ready to say goodbye, to let her slip through my fingers. What if I have more to say, more love to give, more kisses to share? 

I hope for another rally, even just one more. To see Neve’s energy and wit and feistiness would be a gift.

And then my heart breaks and my stomach knots, as I remember the reality of a rally. Yes, there is often cheer and joy. But, there is also pain, anguish, sorrow, and suffering. There are seizures, head pain, shoulder pain, nausea, hallucinations, sadness, grief, frustration, mobility issues, loneliness, confusion, uncertainty. There is also, scarier perhaps, the risk of even more - extreme acute pain or seizures that don’t stop. On top of this, ever present in my mind, is the risk of Neve dying in an even more traumatic way than she is already dying. There are untold ways that death could come for her, that would make a simple, peaceful death, a good enough death, seem like a dream. 

I know that, like birth, most deaths are in fact quiet, simple ordinary affairs. The body knows what to do. But, like birth, deaths don’t always go to plan. And death has not yet met my child. Did you know that we used to say she was writing her own textbook? The Neve’s textbook of Neve medicine. Where contradictions with the side effects of regular medication abound.
Sleep as a side effect of sedating drugs, you say?
No, thank you, she says and runs off.
Insomnia and difficulty sleeping from steroids?
Nah, I think I might nap a bit more, thanks.

Would death now be better, while she is sleeping, unconscious, unaware, comfortable? Should I be hoping for the end to come at once, to relieve my child of her suffering, before another rally brings her back? Would this be the best thing for her? 

I hope that I am with her when she takes her last breath. I also hope that, if I am not, I can accept this. I hope that somebody is there, that she isn’t alone, that they can reassure me that she didn’t suffer. I hope for a gentle, unrushed end, so that we have time to sit vigil. I also hope that the end doesn’t draw out, that Neve does not have to lose any more dignity or suffer any longer than necessary. 

I suspect I will never be ready. There will always be one more thing to say, one more moment to share. 

Not withstanding her suffering, how could I possibly hope for my child to die? Neve is devastated and heartbroken at the idea that she will die before the rest of us. She dreams of growing up, of becoming a parent and a doctor. Surely I can’t hope for an end to these dreams, not when I love her so and I see the sorrow that she feels?

In the end, I am relieved that this decision is not mine to make. I can simultaneously hope for both routes, knowing that I am inconsequential and that I have already relinquished any delusions of control. My only job is to love Neve, to care for her in the time I have with her. After that, I shall care for and love the memories of her. For now, if she rallies, I hope we can enjoy the extra time she has and that it is gentle for her. If she dies now, again, I hope it is gentle. Whatever happens, I hope I can keep going.

I am relieved that my journey through understanding and reclaiming hope has allowed me the freedom to realistically hope without constraint. I turn to you, as you sit here with me, and I ask you, how do you decipher hope in this pause, so charged with uncertainty? What is hope, in this space between life and death, when the final destination is certain but the route unknown?

In the end, when Neve dies, there is no time for hope. Hope in fact feels irrelevant, as she dies so unexpectedly and so suddenly. Her precipitous death ushers in both relief and sorrow. 

I can only hope that she didn’t suffer, at the end. I had hoped so much for her suffering to be done and it is now done. Nothing more can happen to Neve. No more trauma, no more catastrophes, no more fear, no more pain, no more sorrow. 

I hope it was gentle. If she had any awareness, I hope she knew that she wasn’t alone. I hope she felt safe, that she might have smiled inwardly, as she heard the tender voice of a kind nurse, reading a funny book to her. Neve’s room was awash with this tenderness, as well as with sadness, compassion and sorrow. I recall a soft haziness, similar to the soft focus when she was born. There was an unmistakable vulnerability and tranquillity to both rooms, both spaces.

I hope that death was gentle for her. I hope that she was ok.