For mothers who have faced the heartbreaking death of a child, finding a space to heal, connect and share their stories can be transformative. This year we have held two Mum’s Support Weekends for bereaved mothers.  These weekends are deeply meaningful – offering solace, self-care, and a sense of community. 

More than just an opportunity to step away from the everyday, they are a chance for mothers to revisit a place where they felt connected to their child, wrapped in an environment of understanding and love.

The weekend was a time for not only reflection and remembrance but also of hope and strength. Through shared conversations, quiet moments and activities that nurtured the soul, these mothers found a profound connection not only to their own grief journey but to one another.

We are deeply grateful to Kate, Adania’s mum, for sharing her family’s journey to Bear Cottage and how the connection remains.

“We resisted Bear Cottage for years – the other side of Sydney was too far away, we were already deluged by paperwork, there were so many pressures on our time . . . and we were coping OK anyway, weren’t we? Two parents working full time, another child at school, hospital and allied health appointments, palliative care systems in place, and those everyday adrenaline-filled dramas. The usual!

Eventually, we had everything sorted. It was the first week of January 2018, and Adania was ten years old – a child with severe-and-multiple disabilities, unable to sit unsupported, walk, talk, eat orally; she had a seizure disorder; extremely low strength and many respiratory infections. A tendency to turn what we mildly called ‘a little bit blue’; which of course was code for ‘is this it?’. No diagnosis, but some sort of neurodegenerative, neuromuscular disorder – which we had known, since before she was two, was a life-limiting condition. 

What we had planned was a long weekend by the sea, a family trip to Bear Cottage in Manly from the Inner West, a low-key entrée to the place on a ridiculously hot weekend. This was an ordinary week, with no unusual health dramas 
to deal with.

Adania was upstairs and the three of us were downstairs. My partner Frank and I took turns heading out for an early walk and swim with our son, Red, 18 months younger than his sister. The temperature was heading up to 40 degrees. By the time I got back from the water and went to see how Adania was doing – Frank was already there, things had gone downhill, and suddenly we were in end-of-life stage.

Wait, what? All the Bear Cottage systems kicked in – the care, compassion, the practicalities, the terrible suspended waiting. We had to tell her brother that ‘there was a good chance Adania was about to die.’ Furiously, and correctly, this eight-and-a-half-year-old told us there was nothing good about it.

Somehow, on that Monday morning, Adania took an extra breath and decided to stay with us. That waxy pallor retreated, and she kept going. But we’d had the full disaster – we’d seen what Bear Cottage could offer us – the shock of what might happen next.

Instead, Adania lived until March 2023. She almost made it to sixteen. And while we only stayed at BC together as a family one more time, Adania herself returned many times. This was one of the few places that could give us the complex care she required, and the reassurance we needed.

 

The first time she stayed on her own, it was so we could take her brother to Melbourne for a long weekend (wheelchairs and planes were a nightmare). Later, it became harder to travel with her, even on road trips – without hoists and bath chairs and all the usual supports – so she would stay for five or six days in Summer, while we went to the coast and then picked her up all ready for Christmas. I lost track of how many times we did this.
 

The week she died, her decline was fairly quick, and we didn’t make it to Bear Cottage. Instead, over four days, we received extraordinary support at home – from the Palliative Care Team at Sydney Children’s Hospital, from the Marrickville Community Palliative Care Team, and from Bear Cottage over the phone. It all happened at home, as gently and quietly – and wrenching and heart breaking – as these things can be.

Apparently, I phoned Bear Cottage to tell them, only a few minutes after she had died. I had no memory at all of that conversation until I attended a Bereaved Mothers Weekend at BC in September of this year – when Hayley, one of the nurses facilitating the weekend, mentioned it. That was just one of the many points of connection, reconnection, memory and emotional storytelling at this extraordinary weekend.

In some ways I can’t do justice to what happened at  this weekend – for the best of reasons, which is that  we’re all bound by confidentiality, by keeping these stories safe, by sharing them intensely in the moment. But here’s what I can say.

As a group we were all extremely different, with our own losses and pain and grief to deal with; but we all knew something about what the others had been through, by virtue of belonging to this club we’d never expected to join. 

Also – there was a sense that we had been carefully grouped together, to draw out our connections. I was sharing an apartment downstairs with a woman whose daughter had a lot of similarities to mine, a child who had also died at home as an older child; there were others connected because of how young their children were.

Organically, we shared stories and tears and experiences . . . and, yes, the odd dark shout of laughter, snort of recognition, ability to smile at each other. The differences, too, were so important – different levels of support at home, among friends, in the community. Wrenching differences.

All that would have been fine – but perhaps would not have been enough. What made it so special were the shared activities: music therapy, art workshops, facilitated storytelling, all of which opened something in ourselves and – I think – between us. Sometimes this was confronting, but it was done so well that everyone was able to speak. Wrapping a rock (with the abrasive sandpaper of disappointment, the crinkly cellophane of humour, the silky texture of love, the awkward brown paper of judgment: you get the picture) – unwrapped and shared as we explained what we were doing, was really something. We watched each other expand during the weekend.

We also faced down some really tough experiences. Frankly, it left me feeling both humbled and lucky. It also gave space for my own grief, which shifts and washes through the day, but never ever goes away. Which is a long way of saying I’d heartily recommend these weekends, whenever you have the strength to do them. They might just add to that strength.” 
 

Special thanks to our supporters who make these  Family Support programs possible: St Alma’s Freshwater, The Boathouse Shelley Beach, Sah Sin Massage and North Shore Mums Smile2U.