“DID you meet Lily? … We know Lily; (she) lives in heaven …”
That’s how children speak about their little friend Lily Calvert.
She never spoke a word, never walked a step, but there was no limit to the love Lily brought into the world in 10 short months.
Lily was the first child of Priyanka Saha and Will Calvert, born on September 7, 2016.
Next Saturday would’ve been her third birthday and her young friends will be among the many thinking of her on that day.
For Priyanka and Will, it will be a day filled with the deep grief and sadness of having lost their precious daughter so young but also of cherishing the memories of the love and joy they shared.
Lily died about two years ago at the age of 10 and a half months of the incurable brain condition known as Miller Dieker Syndrome.
Towards the end of what had been a normal pregnancy, a scan in the 36th week turned Priyanka and Will’s world upside down.
In a blog Priyanka’s written on their website created for The Lily Calvert Foundation they’ve established in honour of their daughter, the young mother says the scan results were “catastrophic”.
“The folds in the brain were missing. We were told to prepare for a general life expectancy of two years,” Priyanka wrote.
“If she did survive longer they told us she would never walk, talk, communicate, smile, be able to eat, or even hold her head up.”
The diagnosis of Miller Dieker Syndrome was confirmed at Lily’s birth, but she went on to defy some of the medical predictions as her parents strived to give her as normal a life as possible.
“Diagnosis day, those terrible words, will be forever imprinted in our hearts. We wouldn’t wish it on our worst enemy,” Priyanka wrote.
“Shock, grief, love, fear, despair, deep sadness – it was completely overwhelming.
“It was completely filled with sadness. And yet, and yet, throughout it all there was this overwhelming love – for each other and for our little baby.”
And that love was to be the hallmark of Lily’s life.
Despite the warnings she would likely never talk, communicate or smile, Lily did all those things, maybe not in words, but in the way any 10-month-old would.
What’s more, she did it with love and surrounded by love.
“For me, there was the love in and around Lily, there was us as a married couple and then, I guess, the love that we got from our family and friends is probably the third area …,” Will said, during a recent interview in Brisbane, when the Melbourne couple were visiting for a wedding.
“Lily had a power – didn’t she? – of bringing people (together) …,” Priyanka said.
“She united (people) … We already had a very close family but she was able to bring everyone together, and our families are so much closer through the experience, and our friends too …
“I think she gave everyone a glimpse into a different way of life and an ability to kind of not take things for granted, and to hold onto every moment.
“And we see it still with our friends and family, because they consciously live that.”
Lily’s love spread to the Carmelite nuns in Tasmania when Priyanka and Will took her to visit them.
“After she died they planted a tree in her memory – it’s next to the wall of their closed garden and they plan for it to grow big enough to be visible to everyone over the wall,” Priyanka said.
For someone so young, Lily had a way of touching people.
“Lily had a particular way about her so anyone who came into Lily’s presence, I think, left a little bit richer, and a little bit kinder and a little bit more connected, and a little bit more aware,” Priyanka said.
“And even the way that our friends’ children talk about Lily now – they know she’s in heaven and they talk about her, and they say, ‘Well, I think Lily’s eating ice-cream and going down the slide today …’ or ‘I think Lily’s dancing on the stars …’
“And I heard some of them talking the other day to kids who didn’t meet Lily, and they were saying, ‘Did you get to meet Lily? Oh, you didn’t meet her … Oh, we know Lily; Lily lives in heaven …’”
Will said there was something about Lily’s demeanour that endeared her to others.
“She was only 10 months old but obviously, as you know, babies have a personality, and her personality was an absolutely loving, smiling demeanour that engaged everyone she met,” he said.
“Whenever she met anyone she would look at them and smile, and she had a few noises … what would you call them?”
“Cooing – babies’ gurgles and cooing noises …,” Priyanka said.
“Yes, gurgles and coos that she’d make when she was happy, and when she met someone new she’d make those noises, and so people were amazed and drawn by that.”
People were drawn to her, Priyanka said.
“Quite a few people tell us that they were really touched by Lily,” Will said.
“And they continue to (tell us),” Priyanka said.
“Even when I catch up with her music therapist or the physiotherapist, just people you touch base with, and they say to me, ‘Oh, I often think about Lily. She’s gotten under my skin, and she’s one of the ones I don’t forget …’
“And I don’t know what it was about her but she is the one that people remember …
“(And) just watching the kids, like (Will’s) nieces and nephews, (his) sister’s children they just loved Lily.
“And these teenage boys, we’ve got these beautiful photos of them just holding her … And this way that she just touched all of them …
“And they were just devastated when she died, absolutely devastated.”
Now, they’re continuing to show that same love to another little one, because soon after Lily’s funeral Priyanka and Will found out they were expecting another baby.
He’s one year old now, his name is Jasper and he’s “into everything”.
“And he knows who Lily is … he’s just started to say her name,” Will said.
“And he picks up photos (of Lily) and kisses them,” Priyanka said.
“People say he doesn’t really understand but we really want him to grow up knowing that he had a sister.”
She said Jasper “knows (Lily’s) in heaven”.
“We do ask Lily for strength and help, often. That’s another important thing,” Will said.
“Well, she’s a saint. We believe she’s a saint – St Lily,” Priyanka said.
“We do pray to St Lily. We ask her to intercede for us.
“She was baptised. When we took her home from hospital we had her baptised.
“She’s actually baptised and confirmed. They were able to do that. She was six days old.”
The Lily Calvert Foundation continues the love of Lily, raises awareness and support of paediatric palliative care, and encourages conversations around grief and child loss.
For more information, or to donate, go to https://lilycalvert.com/