Are you a little girl I was meant to get to know? Or was your journey complete after only 17 days? You left us a while ago, but I’m still standing proudly beside your incubator home, watching each breath you take. I’m still holding you, searching for you, trying to get to know you at the point of losing you. Your fingers don’t grip. Your eyes don’t see. You’re still warm to touch. Dad is here – can you feel me?

You were born very little: 1.08kg and over eight weeks early. Perhaps never meant to be born alive at all, you were born into trauma, stress and nightmares on ultra-sound and heart-rate trace monitors. I still thought you’d grow. I was waiting for you, but you seemed to disappear into a vacuum, lost inside the repressed nightmares of your parents, and some inner wilderness our culture is so blind to and fearful of.

You passed away after a short struggle with life. I still don’t know if you were real or a dream. Each set of bad news seemed to displace the last, making the previous prognosis seem perversely desirable. From your prematurity to your heart defect to your birth to your myriad ‘complications’. Too sick for the most advanced medical science. Too small for their interventions and operations. No happy ending. No words could explain.

Now you rest motionless, barely covering my hands, somewhere between human presence and human absence.You are our baby daughter. A girl, free from plastic tubes, breathing masks and hospital wards. Free from anaemia, syndromes and illnesses. I’m told I must eventually let you go. You are going back to nature, supposedly the sunshine and the rivers, the wind in the leaves and the bluebells in the spring. But right now you sit in empty car seats, lie in empty Moses baskets and dance silently with your sister around our home. You reach into every shattered hope, nightmare and contradiction in my being.

This message is for you. It is about your life and it is about my grief. I offer you my grief as I don’t know what else to do with it. I have no map for this territory. I’m told grief might let go as time goes on but I don’t think it will ever truly leave. You will always be there, innate to my life.

My grief both awakens and paralyses my senses. I wonder if it is actually real, as I can’t see it, touch it or manage it. I can’t get beyond it, over or around it. I can’t soothe it, forget it, distract it or leave it behind. I can’t pretend it isn’t there. It is with me everywhere I go. If I move, it follows me. Grief colours my outlook, troubles my being and renders my usual routines meaningless.

My grief is at odds with the realm of the private. It moves beyond my private troubles and extended family and does not stand apart from community, society and culture. It does not sit comfortably with the instrumentality of ‘real life’, leisure and work; at odds with an unforgiving labour market, unsupportive employers and stressful, poorly paid working conditions.

My grief is at odds with the market. What is the value of grieving? My grief is not desirable, nor is it desire. It is not romantic, nor seductive. My grief cannot be monetized, bought or sold. It cannot be measured, commensurated or counted. Grief holds no value that I am aware of. There is no demand for grief that I know of. I cannot use grief. Grief does not follow the apparent certainties and laws of market economy. Grief is an uncertainty that follows me; a sharp reminder of impermanence, uncertainty and mortality.

My grief is at odds with the neoliberal state. It eschews the mystifying tangle of pseudo-public and public-private institutions; many of whom only reluctantly offer only the thinnest layer of support to human beings for fear of damaging competition, productivity and efficiency. In a patriarchal society whose still-face is frequently unmoved by the needs and ‘weaknesses’ of others, it is left unrecognised, invalidated and unreciprocated.

My grief is at odds with science. It can fester and escalate into distress; patterns that come to be seen as a property of the individual that must be owned, managed and overcome. Grief becomes reified into a ‘thing’, congealing into the familiar categories and dispensations of expert discourses or consumer society. But my grief is not linear, nor is it rational. It cannot be paused, nor can it be ‘processed’. My experience of you is timeless, imprecise, formless and immeasurable. It is neither subject nor object.

Grief assumes many diverse forms. It evolves intangibly through connection, disruption, discontinuity, decay and growth. It spreads within me, like the search for roots. It moves to great depths before surfacing at unpredictable moments: painful, confusing, cathartic. Grief and transition is not only about linear continuity – moving onwards or forwards – but as much about discontinuity: radical breaks and irreversible change. It is in chaos as well as order. In silence as well as noise. In indecision as well as decisions. This is something still poorly understood or even considered valueless in many areas of traditional, liberal-individualist culture.

Grieving is the loss of connection, intimacy and reciprocity. It is the loss of experience, meaning, community and livelihoods. It is the broken bonds of friends and family, the loss of homes and the loss of truly public and green spaces. It is the vacuum in our lives where supportive institutions should be. How many get the time and the space to reflect our losses? Time and space themselves are a commodity, at a premium.

We are not only unprepared to deal with loss and grief, more that we appear to be trying to deny it, suppress it and dismantle it. Grief, loss and endings something we should avoid or resist, overcome and beat. The experience of connection to self, others and place disrupted by the relentless dictates of the markets and the still-face of modern institutions of improvement, expansion, power and coercion.

I see us grieving a little bit each day. Grief is not only about the loss of a loved one. Grieving is the end of the day, the setting of the sun, the changing of the seasons. It is about indigenous patterns of life. It is in those we pass each day on the street without acknowledgement, or the people, places and broken conventions we have to accept we may never be able to return to. It is in the habits of our hearts and patterns of our being. Where are our cultural spaces for caring and transition, if not to be found here?

Maybe you have found your home now after only 17 days. Maybe we are not very human, or maybe I just can’t use palliatives or clichés right now. Maybe life will gradually twist around your loss like an old gnarled, lightning struck tree. Today, I think of all the conversations and fun we never had and the care I couldn’t give. Tonight my sleep is broken not by your crying but by the crushing memory of your passing. Tomorrow you are with me in the memory of the hopeless hope, the desperate sadness and the courage of your mum and your sister, who wished for you to get better.

I wish you had been meant for our home, here, sharing in our care, our compassion and our warmth. I wish I had felt a squeeze from your tiny hand as you held on to mine for comfort; joining me in this wilderness of life, love and loss.

This blog is dedicated to Eve, and to NICU staff at the Royal Devon & Exeter Hospital, Princess Anne Hospital, Southampton, and St. Michael’s Hospital, Bristol.