It’s unthinkable and unfair, but children come here to die and Bear Cottage makes it OK

Source: DailyTelegraph

Where children come to die

The Bear Cottage Hospital for Children in Manly. Source: News Limited

WALKING through the doors of Manly’s Bear Cottage immediately leaves a lump in your throat and sick feeling in your stomach – this is a place where children come to die.

It’s unthinkable, it’s unfair, but it’s inevitable and, remarkably, Bear Cottage makes it OK.

The Bear Cottage is warm and welcoming.

The Bear Cottage is warm and welcoming. Source: News Limited

Because when you gather the strength to step into one of only two Australian hospices for terminally ill youngsters, you discover senior nurses dressed as fairies, Christmas lights twinkling and cheeky toddlers zipping down the hall on scooters – their cheerful normalcy making the pain bearable.

The cottage itself is warm and welcoming.

Bright books fill the shelves, colourful quilts line the beds, handmade artworks decorate the walls and toys are tucked into every nook and cranny.

Children zip down the halls of Bear Cottage.

Children zip down the halls of Bear Cottage. Source: News Limited

And it’s these little things that make all difference.

Since the cottage opened 12 years ago, its been the home away from home for the families of more than 600 dying children.

Some have made it, but, heartbreakingly, most haven’t.

However, they won’t be forgot.

Their innocent faces are forever plastered on one of the walls within the facility – and nursing unit manager Narelle Martin, who has worked at the cottage since it opened, remembers every single one.

Nursing unit manager Narelle Martin remembers every face.

Nursing unit manager Narelle Martin remembers every face. Source: News Limited

“There are so many people who have touched me – it’s a real privilege to know so many special kids,” an emotional Ms Martin said as she admired their pictures.

“And the strength and resilience they show is incredible, and it has really taught me so much.

“Some of them I think ‘how do you get up every day to face another day’ and they say ‘but look at that person and what they are going through’ – they really are amazing.”

Bear Cottage can house up to eight children and their extended families, even including two private two-bedroom apartments.

Bear Cottage can house eight children and their extended families.
Bear Cottage can house eight children and their extended families. Source: News Limited

The cottage is one street away from the beach.
The cottage is one street away from the beach. Source: News Limited

Located a street away from the beach, ocean views and vast outdoor space make the tranquil environment one of peace and calm: a world away from the hospitals the young bodies are used to.
Some have cancer, others have rare genetic neurological disorders. They come for respite for a week at a time, but if it’s at the end of their illness, their stay is open ended.

Ellie is one of the little girls racing around on her scooter, here to support her big brother, who is at the end of his life.

She’s dressed in matching pink fairy gowns with a tiara-wearing senior nurse better known as ‘Princess Rosalia’.

She’s happy, distracted for a moment from the heartbreak her family is experiencing.

Costing $3 million a year of mostly community donations to operate, Bear Cottage has a holistic approach to care, including a full-time play therapist, while using music and art therapy to help children get the most from their stay.

The cottage offers play therapy including music and art.

The cottage offers play therapy including music and art. Source: News Limited

They have interactive televisions for the bed-bound, treatments from volunteer reflexologists and massage therapists, a spa, outdoor music area, wheelchair swing, a games room, multi-sensory room – and loved pet dog, Frankie.

“It is really a big home, and not just for the children, but for their families,” Ms Martin said.

Bear Cottage recently launched a Mum Boot Camp well-being program, giving six stressed out mums six months of support to look after themselves, and their children – with guidance on nutrition, help from motivational speakers, exercise programs and tips to survive the hard times.

“A lot of our mums are isolated, have low self-esteem and are in a space that is so hard to get out of,” Ms Martin said.

“The first part they come for a week, and we look after their child and once a month they come for the weekend as a follow up.”

Katrina Young, a 38-year-old from Sydney’s Allambie Heights, is one of them.

Katrina Young with her daughter Hannah.

Katrina Young with her daughter Hannah. Source: News Limited

Ms Young said the staff at Bear Cottage had given her and daughter Hannah great strength – particularly after the death of Hannah’s identical twin sister, Amelia, last May.

The eight-year-old girls suffered Rett syndrome, a severe genetic disorder of the nervous system, affecting all body movement, as well as scoliosis, autism and epilepsy, with Amelia suffering her first seizure at just 14 months of age.

Confined to a wheelchair, Hannah can’t talk, is fed by a tube, and unable to use her hands, relies on her mum for everything.

“Christmas last year was really difficult and all those firsts without Amelia were so hard,” Ms Young said.

“When it changed to the New Year I was so sad because Amelia wouldn’t be part of that year with us, and birthdays are really hard because they are identical.

“Boot camp came at the right time for me because when Amelia was in hospital all the time I didn’t get the chance to eat properly – you only eat what is in the cafeteria or what can be put in the microwave – and then after Amelia died it just got harder with a lot of emotional eating.

“At first I was just worried about Hannah because she and Amelia were so close, but she is doing a lot better. She is still sad, but she is doing better.

“Now I am ready to start looking after myself.”

Resident dog Frankie.

Resident dog Frankie. Source: News Limited

Ms Young said her girls had been coming to Bear Cottage for three years, during which time Amelia, who was physically weaker than Hannah, suffered some 23 pneumonias.

“She couldn’t fight any longer,” the single mother said.

Seanne Lavender’s daughter Gaby has been coming to Bear Cottage since it opened 12 years ago.

Talking to The Sunday Telegraph just before the Port Stephens family left the facility for the last time, Ms Lavender was devastated that Gaby, who had just turned 18, was no longer eligible for care. She now falls into the age bracket for adult palliative care.

 

'We are lucky to have her': Seanne Lavender and her d...

‘We are lucky to have her’: Seanne Lavender and her daughter Gaby. Source: News Limited

With a rare mitochondrial disorder leaving her unable to metabolise glucose and carbohydrates, Gaby wasn’t expected to live past the age of one.

“We are very lucky to have her, she has far exceeded all medical expectations – her brain was dying at 10 weeks of age and all her vital organs were starving of energy,” a tearful Ms Lavender said.

“She is fed by a tube, she can’t swallow, she can’t walk, is vision impaired and has epilepsy.

“Gaby can’t speak or communicate in any meaningful way, but she can sing.

With three other children, Ms Lavender said struggling to care for Gaby left little time for the rest of their family – a fact of life changed by Bear Cottage.

“Coming here meant we could actually spend time with the other kids, because we trusted the staff to be with Gaby and we could take the kids for a walk on the beach, or to have an ice-cream,” she said.

Going home for the last time, Ms Lavender said she was forever grateful to Bear Cottage and its staff.

“The people here have been our family, and we will really miss that.”

* To support Bear Cottage, phone 9976 8300 or visit http://www.bearcottage.chw.edu.au

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