Heartbreaking photo of mum's final goodbye to daughter

Ms Khoury held Lili in her arms for her final goodbye to her favourite song. Photo / Supplied

This was one of Herald Lifestyle's most read articles in 2019.

There's something Sara Khoury and Sara Spurr have in common, other than their first names.

Both Sydney mums never wanted to go to Bear Cottage.

"I was petrified. I said no, I'll never be going there," Khoury remembers, hearing about the only children's hospice in New South Wales.

Spurr tells her version differently, but with much the same sentiment.

"I was hijacked to come here by husband and case worker," she recalls.

"I said, I'm fine, I don't need any help. Clearly I did.

"But walking in those doors, I went, 'Oh, wow'. Literally the atmosphere hit me the minute I walked through the doors, an atmosphere of care and people who knew what they were doing, and who were here to just envelope you with love and support.

"I'll never forget that."

At the time there was a long, leather couch with beautiful teddy bears arranged on it.

You'll still spot teddies everywhere at Bear Cottage, tucked away in Manly on Sydney's northern beaches.

But this is a memory Spurr still remembers so vividly — and that moment was 17 years ago.

You see, this is where the two Saras' stories — like many of the other families who visit Bear Cottage — are very different.

Spurr's daughter Lucy is now 18. She was born with a condition called aicardi syndrome which brings with it a shortened lifespan.

Doctors didn't expect she would make it to 2.

Bear Cottage had only been around a year when Spurr and her husband Luke arrived, with Lucy and 2-year-old Rosie in tow.

They went back for a family holiday when Sophie, 16, Jack, 14, and Max, 12, were each born, and in between new baby arrivals, too.

They've visited so much it's almost become their second home. Certainly, a much-needed home away from home.

Ms Khoury got to cherish Lilli's precious final days at the beach. Photo / Supplied

For many others — Khoury among them — it's been a home to say goodbye.

Her daughter, Lili Mantoura Khoury, was 4 when she died at Bear Cottage last year. She spent her short life battling severe epilepsy, her little body constantly seizing.

Bear Cottage helped the single mum get some desperately needed support and relief, even though she didn't think she needed it at the time.

And it still does. Both Saras came together for "Mother's Camp" in May, an almost "girls trip" away for a week that starts on Mother's Day and involves pampering, social outings, and plenty of time for reflection.

While other mothers at the camp had their children with them, Khoury didn't have Lili — and walking through those doors without her was tough.

"It's so nice to sit with a group of people that totally get you," she says.

"People can say they understand what you're going through, that they're tired too, but no, you don't get it. You don't wish this on anyone, but you don't get it, unless you're walking in these shoes.

"To come to Bear Cottage and sit with a group of people that totally get you, you feel like yourself, because you lose a lot of yourself when this happens."

Bear Cottage is one of only three children's hospices in Australia, but it's nothing like a hospital or what you'd imagine palliative care to be.

Its rooms are set up to make families feel like they're at a holiday home and, only a short trip from Manly's beautiful beaches, they almost are.

Only this holiday home is equipped for 24-hour paediatric care and that specialised paediatric care is exactly what provided Khoury with precious final memories she'll forever cherish.

"Lili was having an okay day and one of the beautiful nurses, Megan, came up to me and said, 'Lili likes going to the beach doesn't she? Right, well we're taking her to the beach'. I said, 'How are going to do that?'

"She said, 'Oh, we'll do that', and I'm thinking oh my god, what if something happens?

"I was very worried, telling all my family, and the next thing everyone is organising it."

Lili was put in a wheelchair — one she'd had for just four weeks because it took "forever" to get through the National Disability Insurance Scheme — and was driven very slowly down to Shelly Beach.

At the beach she was put in a special water chair she loved using at the cottage.

"We got her out of the wheelchair, put her in the water chair, and we just sat near the water," she says.

"It was just amazing. Just to know she was laying there in the sun, looking like a celebrity — because everybody in hospital and Bear Cottage knew Lili as the best-dressed child.

"She was always dressed beautifully, her hair was always done, her nails were always painted. Always. She looked a million dollars all the time."

In the weeks leading up to Lili's last few days it was Superhero Week at Bear Cottage and Khoury decided it was time to share her story.

The theme was "Go Dotty for Lili" — because Lili's favourite thing was polkadots — and in two weeks she raised closed to $40,000.

The fundraising was short-lived happiness for a fate Khoury knew was ultimate.

But even then Khoury said the cottage went "above and beyond, out of this world" in preparing her and her family for their final goodbyes.

"Even for her passing they were unbelievable, they said 'Sara, it's going to happen' and I'm like what's going to happen?'.

"They said it's going to happen soon, what do you want?

"I said I just wanted her in my arms. They put her in my arms, we played her song, Justin Bieber's Purpose.

"She loved Justin Bieber and it was very fitting because the first line of the song is, 'I feel like I'm breathing my last breathe', and that's when she passed in my arms.

"You couldn't have asked for a better way."

Staff asked if Khoury wanted to bath Lili again. True to Lil's style, she only wanted to dress her.

And of course, she was in polkadots.

This story was first published on news.com.au.