Hope at the edge

A pause on the cusp of life and death

Neve, mid April 2023, weeks before her death. Her final visit to her beloved hospice. Painted in Raw Umber Dark Neutral watercolour from The Stoneground Paint Company.

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

On the borders of life and death, at the cusp, there was a crossroads of sorts, two paths to choose from. I say choose, but choice was irrelevant. I was merely an observer, a supporter, a holder, a mother. Ultimately, in her case, both paths eventually converged. There was no escape hatch, no way out. Aggressive brain tumours are like that. She could veer one way or the other, but the end was the same. She was dying and death was a certainty, I knew this. 

Neve had a habit of becoming critically ill, deteriorating dramatically. In the beginning, we would move her to the hospice at this point, but in time we began to choose to stay home. Doctors and nurses would pop round, gentle, compassionate words would be spoken, carers would hold her tenderly, death could be spotted on the horizon. The atmosphere, usually invisible to the eye, would change, become palpable. Neve’s hospital bed would be raised higher than it normally was and there would be a hushed busyness to her space, our house. I would feel everything: fear, overwhelm, anxiety, regret, acceptance, love, heavy, weightless. 

And then, Neve would rally. Death was suddenly 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 often profound, leaving us all emotionally wrung out, exhausted, reeling in shock. 

But in between those watersheds, the deterioration and then the rally, in between was a space. A liminal space. A pause, with both life and death skirting its sides, her sides. Reality was breached, a fissure appearing. Time stood still, it slowed down and it sped up, all in this juncture. 

I would sit by Neve’s side and find myself hoping. But what was I hoping for? What do you hope for, when you are watching suffering, when you have been watching suffering for too long? What do you hope for, when you wonder whether you will hear your child say even one more word? When you wonder whether you will ever see her open her eyes, see her smile, feel her hand grip yours? Her hands were soft and warm. They were strong hands.

Sometimes hope is nuanced and even contradictory. When your child is sleepy, in pain, with laboured breathing and cooling hands and feet, on the back of three years of suffering, how do you decipher hope? Do you hope for her to come back again, for one more smile, one more witty comment? Do you hope that she rallies? What if that opens the door to even more suffering? Is hoping for a rally selfish? Do you hope that she dies peacefully? Is it ever okay to hope that somebody dies, especially somebody you love dearly? What if that somebody is your child? What if she is dying and you have no control over it anyways? 

Mid June, 2020. Weeks before Neve was diagnosed with brain cancer. She was already unwell. Painted in Raw Umber Dark Neutral, from The Stoneground Paint Company. My first attempt at a self-portrait.

I want to invite you to come, to cast ourselves back in time, to be with me at Neve’s bedside. Here, squeeze yourself into this quiet space, alongside me. Stand behind me, with your hand on my shoulder. Or, better yet, sit 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, comfortable, she isn’t in pain. 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. She used to, though. We would often communicate by hand squeezes. I hope that if she has a hand in hers, she can tell us if something isn’t right. I hope so. There it is, a visceral hope. I hope she can convey to us if she is in pain, in distress. I hope she knows that we are here, that she isn’t alone, that she can feel us.

What do you think I should be hoping for? What do you hope, as you sit here with me? I can tell you the thoughts that stumble through my brain, that jostle for emotional victory. 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 the recognition within them. I hope for another eye roll, for a glint of mischief, for the crinkles on the edges of her eyes, when 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. 

And then I crash down, remembering the reality of a rally. Yes, there is energy and wit and feistiness. But, there is also pain, anguish, sorrow, and suffering. There are seizures, head pain, shoulder pain, nausea, hallucinations, sadness, grief, frustration, mobility issues, loneliness. There is also, scarier perhaps, the risk of more. The risk of extreme acute pain, of seizures that don’t stop, of so much more. And there is the risk of Neve dying in an even more traumatic way than she is already dying. I won’t list the options, but there are untold ways that death could come for her, that would make a simple, peaceful death seem like a dream. 

I know that, like birth, most deaths are in fact quiet, simple 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. Anything you think you know, well, she will opt for something else. 

So, would death now, while she is sleeping, unconscious, unaware, comfortable, would that be better? Should I be hoping for death to come, to relieve my child of her suffering, before another rally brings her back? Is that actually the best thing for her? 

I hope that I am with her when she takes her last breath but 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. 

But how can one hope for their child to die? I know Neve is devastated, heartbroken, at the idea that she will die before the rest of us. That she won’t get to grow up and be a parent and a doctor. Surely, a mother should not hope for death for her child?

I think I am relieved that this decision is not mine to make. I can simultaneously hope for both sequels, knowing that I am inconsequential. My only job is to love Neve, to care for her, for whatever time I have with her. And then, to care for and love the memory of her. If she rallies, I hope I can enjoy the time she has. I hope it can be a gentle time for her. If she dies now, I hope it is gentle. I hope I can keep going.

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

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

Where does that leave me and hope? 

I can only hope that she didn’t suffer, at the end. I 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.