“WHEN you’re told your child is going to die, you’re suddenly parenting without a future, and so you’re not parenting … You’re actually saying goodbye.”
That was the horrible reality Priyanka Saha and her husband Will Calvert had to deal with as they prepared for the birth of their first child almost three years ago.
“We had a very normal pregnancy, and we were heading off to a 36-week scan and we were excited to see the baby, because the baby was going to be here in a couple of weeks,” Priyanka said as she recalled one of the worst days of her life.
The Melbourne couple told their story when they were in Brisbane recently visiting family and friends and attending a wedding.
Raising awareness for paediatric palliative care
Lily died about two years ago at the age of 10 and a half months, and Priyanka said she’d only recently been able to talk publicly about it.
She’s done so in a blog on the website of The Lily Calvert Foundation which she and Will have set up in honour of their daughter.
The foundation aims to “raise awareness and support of paediatric palliative care, and encourage conversations around grief and child loss”.
“Nothing can knock the wind out of you more …,” Priyanka said as she recalls on her recent Brisbane visit how everything changed on the day of the 36-week scan.
“I still remember being in that room (for the scan) and it was taking a little bit longer than normal and, all of a sudden, I had this kind of hot, panicky feeling when (the doctor studying the scan) was being quiet …
“And suddenly it was, ‘We can’t see the brain … the brain’s not looking like we’re expecting it to be … and I’m really sorry …’”
It wasn’t until Lily was born that it could be confirmed that she had a terminal brain condition called Miller Dieker Syndrome.
“We were told to prepare for a general life expectancy of two years. 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,” Priyanka wrote in her blog.
“Shock, grief, love, fear, despair, deep sadness. It was completely overwhelming.
“It was completely filled with sadness. And yet, … throughout it all there was this overwhelming love – for each other and for our little baby.”
Speaking again in Brisbane about the grief, Priyanka said “as a parent, you want to do what’s best for your child, and you’ve planned for that”.
“Even from the beginning, you’re constantly planning for your child’s future,” she said.
“You’re planning their first steps, you’re planning their first foods, you’re planning and dreaming and hoping about school, and right up until the point of your child walking down the aisle and getting married one day, or standing at the end of the aisle …”
Saying goodbye to her future
But when you get a diagnosis like Lily’s “you’re saying goodbye, not only accepting that your child will die, but you’re saying goodbye to all of those experiences that you’re not going to have”.
“You’re grieving the loss of the child but you’re grieving first steps, first foods, first walk, first everything, and we will constantly be grieving that our whole life, I think,” Priyanka said.
“And, secondly, you’re suddenly being asked to parent without a future – that uncertainty.
“So you’re accepting that our job for Lily was to parent her for the moment, for every single moment, to make her life as best it could be for every single moment, with maximum dignity, with maximum health, but then, to ultimately say goodbye.
“And that’s what is so messed up about it, because you’re suddenly not parenting for the future like a normal, everyday person.
“You’re parenting to the grave and that’s …”
“It’s tough …,” Will finishes the sentence.
It was “scary” for them, too, not knowing how long Lily would live.
“At first, it looked like she wouldn’t pull through but then she suddenly rallied and, next thing you knew, we were going home, and we were able to be like a normal family,” Priyanka said.
When Lily was born, her doctor wasn’t even sure she’d make it through the night.
“Unbeknownst to us …,” Will said.
“I mean, this was our first baby and we thought she looked perfect and wonderful and pretty healthy.”
Will remembers Lily “soldiering” through that first night, and “she continued to soldier on through, the whole time”, he said.
Lily did “amazing things” when she came home, Priyanka said.
“She started to breast-feed when they predicted she would never feed,” she said.
“So, despite the sadness and how difficult it was, there was a real calmness and peacefulness, and we made our world small, and it was a really … like, we have beautiful memories of that time.
“It stopped being so scary, and it just became our life, and Lily became our life, and we were fine.”
Then the couple made a really important decision.
“One of the things that we realised quickly was that we had a choice,” Priyanka said.
“We could wrap her in cotton wool and never take her out or do anything, or we could let her live life.
“And we kind of consciously made that choice to go out and take her to places and take her to the park, and allow our family and friends to pick her up and cuddle her.
“She came to Brisbane. She had her first swim at Noosa. We took her to New Zealand to see Will’s sister.
“She spent a lot of time in Tasmania (where the couple is from). She did a lot of travelling for a 10-month-old.
“And so we really wanted to kind of give her those experiences and for her to go out and do them. I think for the first five months it was beautiful …
“We embraced it. Lily had Christmas in Brisbane. Her first and only Christmas was in Brisbane.”
Foundation helps keep Lily’s memory alive
Lily started having seizures when she was five months old, and that’s when Priyanka and Will had more conversations with the doctors and palliative care teams, discussing what would be best for Lily and for them.
They reached a decision together to keep Lily at home as much as possible, with Priyanka and Will learning to administer her medications and having special support from palliative care teams.
“We wanted to be able to take her out and keep living a normal life, so they worked with us to help facilitate that,” Priyanka said.
“It was better for her to be home than stuck in a hospital, as long as it was safe …
“We had our doctors’ mobile phone numbers and we could call them in the middle of the night, and as she started to get sicker we had a nurse on call.”
There was also support from a physiotherapist and a music therapist.
“We were also connected with the children’s hospice in Victoria at that stage as well, which is called Very Special Kids,” Priyanka said.
“So we had the ability, if we needed to, to go there. So if she was sick in the middle of the night and we just went, ‘We can’t do this anymore’, we could go there.
“We didn’t actually end up doing that.”
It convinced the couple, though, of the importance of paediatric palliative care.
“There are only three (children’s hospices) in Australia,” Priyanka said. “(Apart from Melbourne’s) there’s one in Sydney and one in Brisbane.”
That’s one of the main reasons they wanted The Lily Calvert Foundation to be about raising awareness and support about paediatric palliative care, and because they knew how “massively under-funded” it was.
“We knew we wanted to help other families like ours and we knew we wanted it to be for that pointy end where there is no cure, and it’s grown from that,” Priyanka said.
A chance for hope
Life changed in a big way for Priyanka and Will not long after Lily died.
“Shortly after Lily died, we learnt she’d sent us a little surprise in the form of her baby brother (Jasper), who was born in April last year,” Priyanka said.
“He’s wonderful. And he brought joy back into our life again.”
And now the couple wants Jasper to be part of the foundation’s future.
“I remember when we were first talking about it, it was to have something that (Jasper) could be involved in …,” Priyanka said.
Will said the foundation helped keep Lily “very, very present for us”.
“It’s a hugely positive way to channel all that energy,” Priyanka said.
“It’s like all that energy and purpose can go into something, something really positive, and it is a wonderful way to keep her memory alive, and we can help people at the same time.”
Parents find key to dealing with grief is to learn to live with it
THE writings of experts on grief were not much help to Priyanka Saha and Will Calvert after the death of their first child Lily at 10 and a half months old.
Thinking back over the two years since Lily’s death, Priyanka said the first of those years was “a lot more about survival”.
“I think you turn a corner a bit … and it was Priyanka who woke me to this, more than me realising it … that you try to do things and think that time helps you overcome the grieving process,” Will said.
“But I think what we’ve realised is that you never actually do (overcome the grieving), and you’ve just got to come to terms that you never actually do, and that that’s okay.”
Priyanka said she thought that was the first step.
“And I think, rather than try to plan and think that we’re trying to stop grieving, we can actually just accept that it’s part of your life and that was a turning point for us – one, now to talk about it more openly; (and) two, want to invest more time in (The Lily Calvert Foundation) …,” Will said.
The couple said putting their energy into the foundation helped with the grieving.
Priyanka said realising that grief was part of their life helped them refine their aims for the foundation.
“We knew we wanted to help other families so a big part of it is raising awareness around paediatric palliative care and supporting that through our grants scheme but the second bit, which has grown as our grief journey has changed, is recognising within ourselves that you never stop grieving and then realising that the reason it was so hard to understand that is because society doesn’t talk about it that way,” she said.
“If you look at any kind of grief literature, it’s like they talk about it like you’re running a marathon or you’re climbing a mountain or you’ve got a cold so it’s all something you’ve got to get through.
“It’s like you’ve got to get to the other side …”
Learning to live with grief
Will adds: “There’s light at the end of the tunnel, and all this stuff.”
“And it’s wrong,” Priyanka said, “because you don’t get through it, or get over it, or cross the finish line and suddenly your life goes magically back to the way it was before.
“Rather you – like I said – you learn to live with it and it’s the minute you realise that you learn to live with it, that everything changes.
“So what we’ve noticed is that people (engaging with the foundation through social media) have been responding to that really well so, on our Instagram page, we’ve started talking more about grief and child loss, and we’ve started to get more and more followers, and people want to talk about it.
“And, particularly they want that permission to be able to grieve and actually talk about it without people getting uncomfortable.
“So I think a part of where we want to take the foundation is encouraging conversations about grief and child loss, and helping break down society’s taboos about it so that we can contribute to changing that narrative …
“And that has come more as time’s gone on.
“We didn’t go, ‘This is what we want to do …’ when we started because we didn’t know. We hadn’t been through it ourselves.”
Will said it was a difficult topic for people to raise with them.
“And as a bloke I’m still hopeless at talking to other people if they have a tragedy or death in the family,” he said.
“I think I’ve got better at it through this experience but it’s just human nature.
“I guess we’re trying to, from our story, make people feel comfortable to be able to talk about it and to ask questions, and, if they’re going through their own challenges, to be able to feel free to ask us if they have any questions.
“We’re not putting ourselves out there as the experts.
“We’re just trying to help people who have gone through similar …
“(We want to) encourage conversations about it, one, and, if we can help, then we’d love to because we had so much help before, during and to this day still from our friends and family – all that love and support.
“We just want to try and give a bit back.”