REAL LIFE: “I am still figuring out how to survive without my child”

Please be aware that this article contains topics that you may find upsetting or triggering.

By Priyanka Saha

On 22 July 2017 my ten month old baby, Lily Calvert died of a rare brain condition known as Miller Dieker Syndrome.

Only two babies every year in Australia are diagnosed with this condition. I had a healthy pregnancy until an ultrasound at 36 weeks revealed a problem. It was the day my life changed forever. My husband and I were told we might have two years with our child, if we were lucky.

Devastatingly, we were robbed of even that. Since she died, I am a different person, I have different beliefs, a different outlook on life. I am still figuring out how to survive without my child.

After her death, my husband and I were surrounded by supportive family and friends, but we were lonely and isolated by our loss. It’s hard to comprehend how life-changing grief is unless you have experienced it.

In Lily’s memory we launched The Lily Calvert Foundation, and a national music therapy program for children in paediatric palliative care. But we still felt so isolated.

So I turned to social media and unexpectedly found a community of baby loss parents and families of children with life-limiting diagnosis. Mothers from across the world living the same heart breaking journey as me. Parents who were desperate to share photos of their babies. Desperate for others to say their children’s name, to share in the joy of their existence. I also found a community of people who were grappling with fresh and devastating diagnosis for their children and eager to know what their new trajectory might look like.

I started to realise how powerful some of the stories and experiences could be for others who were entering the world of paediatric palliative care, life-limiting diagnosis or child loss. Sharing our experiences helps others to feel less alone, to access advice and tips that only a parent can know, and can help parents to advocate for their child in complex medical systems.

It can also be heart achingly practical – like how to document the last few days of your child life. There is no right way, of course, but professional photos, finger and hand imprints and plaster casts of little hands and feet are items that will be treasured forever.

This is why, this Sunday on Bereaved Mothers Day, I am proud to launch a new story telling platform, ‘The Murmuring of Ten Million Women (MTM)’ is a space dedicated to sharing stories of all our children, including first hand accounts of pregnancy and baby loss, and the stories of little warriors with life limiting diagnosis.

Inspired by this empowering quote I read and saved early on in my grief by author Mirabai Starr from her book Caravan of no Despair.

“Even as I rocked on my knees howling I detected soft breathing behind the roaring. I leaned in, listened. It was the murmuring of ten million mothers, backward and forward in time and right now who had lost children. They were lifting me up. Holding me. They had woven a net of their broken hearts and they were keeping me safe. I realised that one day I would take my rightful place as a link in this web and I would hold my sister-mothers when their children died. Then, my only task was to grieve and be cradled in their love.”

The MTM is bringing together stories from mothers in Australia and New Zealand who have received a catastrophic diagnosis, and those that have loved, lost and grieved the death of their child. Through storytelling, the platform aims to help parents feel less isolated, to create a safe space for the grieving and provide reassurance that there can be hope after terminal diagnosis and child loss.

The platform is an important resource for an often-forgotten group of parents Mothers from Australia and New Zealand will tell their story, each unique but with the bond of shared experience. The stories will provide a resource to gain insights, advice on coping and to honour memories.

I wanted to create a unique space where families could feel less isolated and to help them see there can be moments of joy amongst the heartache. For those who have already lost a child, I wanted to create a judgement free zone to talk about the realities of grief, and to share hope – especially when it feels like hope is lost.

Submission are now open to mothers from all around Australia and New Zealand to share their stories and enquiries can be made on the website. If you have lost a baby or know someone who has I invite you to visit the website and join our community.

To read or submit your stories on The MTM head to Priyankasaha.com.au