Why is it that when we hear the words palliative care, our hearts sink?

For some, it’s a word that catches the breath – a heavy, blue feeling that drops straight into the pit of the stomach. I understand. I felt exactly that when, in 2013, our family paediatrician used those words in reference to my son, Athan.

It was not based on any lived experience. Just the perception I held. To me, “palliative care” meant death was near. The Oxford Dictionary defines it as “care for the terminally ill and their families,” and it’s that phrase terminally ill that sends hearts crashing. It sounds like the end.

But what I’ve come to know is that palliative care isn’t about giving up – it’s about living well, right to the end.

My name is Selena, and I’m the proud mother of two gorgeous boys – Athan, who is forever 12, and Dean, who is also now 12. Our palliative care journey spanned nine years, and we are one of the incredibly fortunate families embraced by Bear Cottage – a place that challenges every misconception of what a children’s hospice is.

Bear Cottage is located in Manly, NSW – but it feels more like a second home than a medical facility. Nurses are not in uniforms. You are greeted like family. And while the children who stay there are very ill, the focus is not on death – it’s on life. On comfort, play, rest, and memory-making. The medical care is world-class, but what makes Bear Cottage truly extraordinary is its holistic care - for the whole family.

Athan was born in 2010 with a rare brain condition, PMG-BG. He was profoundly disabled – non-verbal, almost blind, tube-fed, experiencing respiratory failure, opisthotonous and chronic epilepsy. He was palliative from the age of five. In his short life, he endured more than 50,000 seizures, over 100 hospital events, and spent the equivalent of two full years in hospital. By 2015, he required hospital-level care at home: oxygen 24/7, multiple daily medications, constant suctioning, nebulising and chest physio, and round-the-clock care.

Bear Cottage supported us through it all – more than 20 Bear Cottage admissions for planned respite, emergency care, medical management, and three end-of-life stays. Twice, Athan bounced back when all hope seemed lost. These stays allowed me to catch my breath – our only real holidays. There, we played. We rested. We lived fully. Athan had deep luxurious baths, enjoyed music and art therapy, time in the sensory room and gardens, long cuddles with mum, and the loving attention of the Bear Cottage team. In this supported environment Dean and I explored Manly – beach visits, ice cream, scooter rides and time to just be. Freedom we simply couldn’t have at home.

When Athan was five, he went into respiratory failure. We were at Bear Cottage that Christmas, with the expectation it was end-of-life. To everyone’s surprise he survived. In 2018, we had another end-of-life stay – again, he miraculously recovered. By 2020, COVID compounded our isolation. We locked down early. Bear Cottage continued to reach out - toy deliveries, phone calls, text messages and safe admissions even at the height of the pandemic. Their support never wavered.

But by 2022, Athan’s health had deteriorated. Life was increasingly fragile and his suffering level even higher. In December, we entered Bear Cottage one final time. We were due to leave on Boxing Day, but that morning, Athan’s breathing became laboured. This was not unusual; however, it was not safe to travel for one-hour duration home. We stayed. By the afternoon, it seemed imminent: he was dying.

The team at Bear Cottage, already exceptional, lifted to a phenomenal level. Every comfort was anticipated. Every need met. We were surrounded by nurses who knew us – and loved Athan, Dean and I. After he passed, we had extended time to hold, kiss, love, cry, grieve and say our good-byes. Four additional precious days!

Departing Bear Cottage we stood with staff on the balcony, releasing helium balloons as Athan was driven away. It was heartbreaking, but there was beauty in it too.

Bear Cottage gave us time – time we never would have had at home or in hospital. Precious, sacred time.

Palliative care is not the absence of hope. It is not the end of joy. It is care focused on quality of life – on dignity, comfort, and connection. It supports families to survive what often feels un-survivable. It helps create meaning and memories, even in the most difficult moments.

Bear Cottage is not a place of sadness - it’s a place of profound love. It is a sanctuary. A safe place. A cocoon.

This Palliative Care Week in 2025, I ask you to look beyond the fear those words might stir. Think instead of care that wraps around families, of moments made easier, of joy found in unexpected places.

Thank you, Bear Cottage for the heartfelt and life changing work you do every day. You are helping sick kids and their families to create the most precious things we have – beautiful memories and time.

And to the Sydney Children’s Hospitals Network Palliative Care Team, who walked this long road beside us – thank you. Your tireless dedication to Athan’s comfort and evolving medical needs sustained us. Also, to the wonderful carers, nurses and doctors who came into our home providing high level care and love.

Acknowledging all the individuals in our Palliative Care journey. You are too many to name, but forever written in our hearts. We are deeply grateful.

By Selena Loucas
Passionate advocate for Bear Cottage.