Grief literacy, in real life: where this series has taken us

Some grief stories begin with a single moment. Others, like those around childhood illness, creep in slowly and take up space in your life long before anyone has died. In this series, grief literacy has not been a theory or a checklist – it has been a way to name what families in Aotearoa are already carrying, and a way to steady each other so none of us feel quite so lost in the dark.

Grief literacy is simply the shared language, attitudes, and skills that help us recognise grief, talk about it, and offer support that actually fits. It is not about getting grief “right”, or moving through neat stages, but about understanding how different losses can sit side by side: hope and fear, relief and guilt, gratitude and anger.​

What this series has covered

Across this series, we have explored some of the less visible corners of grief that show up around childhood illness, disability, and neurodiversity. We have named anticipatory grief – the ache of what might be ahead – and ambiguous grief, where life sits in limbo and there are no clear answers about outcomes, diagnoses, or what “normal” might look like again. We have talked about disenfranchised grief too: the kinds of losses that don’t always get recognised by systems or even by friends and whānau, like cancelled milestones, changed friendships, fertility decisions, or the way siblings’ lives narrow quietly around hospital schedules.​

The blogs have also traced everyday scenes that don’t make it into pamphlets: waiting-room jokes that are a little too loud, packing bags in the middle of the night, sending one child to school while another wakes up to a new round of tests. Through these stories, Silent Hum has tried to show that grief literacy starts in the ordinary – in how we speak to each other, who we include, and how we make space for mixed feelings at the kitchen table as much as in the clinic room.​

Why grief literacy matters for whānau

For parents, grief literacy means having words and concepts that don’t pathologise what you are feeling, but instead say: “This makes sense in the context you are living in.” It lets a mum name that she is grieving the loss of certainty, not just fearing death; it lets a dad recognise that his anger is tied to constantly needing to be “on” with services, paperwork, and safety plans. When families understand these layers, they can ask for support that feels more precise: “We need someone who can sit with our anticipatory grief,” or “Our child is alive, but we are still grieving what school was supposed to look like.”​

For siblings – the “glass children” who can feel both seen-through and fragile – grief literacy is a way of saying out loud that their losses count too. It reminds adults to check in not only when there is a funeral, but when there are changed routines, missed birthdays, or the quiet ways a brother or sister starts carrying worry they do not yet have language for. When clinicians, teachers, and community members become more grief-literate, they are more likely to notice these shifts and respond with care rather than punishment or misunderstanding.​

What families and communities can do

Grief literacy is not something that lives only in hospitals, lecture theatres, or training courses – it lives in relationships. Some of the most powerful steps are deceptively simple:

• Start where people are, not where you think they should be. Ask, “How is this for you today?” instead of, “Are you okay yet?”​

• Use clear, honest language with children and adults, even when the truth is painful. Euphemisms can make the load heavier, not lighter, because people are left to fill in the blanks alone.​

• Make room for more than one kind of grief in the room: a parent who is intensely hopeful, a sibling who is angry, a grandparent who feels helpless. None of these reactions cancel the others out.​

• Remember the cultural context. In Aotearoa, grief literacy must hold space for tikanga, whakapapa, and the different ways whānau mourn, remember, and stay connected across generations.​

• Don’t wait for crisis to offer awhi. Practical help – a meal, a ride, sitting in a waiting room, translating jargon – is also grief work, because it acknowledges that the situation is heavy and that the family does not have to carry it alone.​

  
  

These are not “fixes” but small practices that make it safer for grief to be seen, named, and shared, rather than pushed into the corners of someone’s life.​

Where Silent Hum is heading next

The Silent Hum Foundation exists because hospitals, homes, and community spaces are full of families who already live with grief, courage, and love every day. The aim has always been to turn lived experience into steady support: blogs that are honest but gentle, resources that are simple and practical, and training that helps professionals stand alongside whānau with more confidence. Developing workshops and courses on grief literacy – including work with organisations like Whāraurau – is one way this kaupapa is growing, so that the knowledge carried by families can influence the systems around them.​

This may be the final post in this specific grief literacy series, but it is not the end of the conversation. From here, Silent Hum will keep sharing kōrero, tools, and advocacy shaped by what families in Aotearoa say they need – from hospital checklists and sibling support, to reflections on neurodiversity, long-term illness, and life after loss. Grief literacy is never “finished”; it is something learned together, over time, in the quiet hum of real life.​

If this series has resonated with you, you are welcome to share it with your own networks, or to use it in team discussions, training days, or support groups. And if you are a parent, sibling, clinician, teacher, or community member who wants to talk further, Silent Hum is here – listening for what is said, and for what sits quietly underneath.