The Sands National Conference, supporting parents and whānau who've lost a baby or infant, is being held in Christchurch this weekend. Herald journalist Kurt Bayer today heard Jane Weekes, whose triplets were killed in a 2012 mall fire, talk about rebuilding her life after such an unthinkable tragedy – and witnessed the official launch of a new government website aimed at helping bereaved parents through the worst time of their lives.
She was having a great day. A birthday lunch at a Waiheke vineyard had turned into her group of girlfriends laughing and dancing.
But even though it'd been seven years since Jane Weekes' adorable 2-year-old triplets Lillie, Willsher and Jackson had died in a blaze at a Doha shopping mall's daycare centre, some people were shocked she was out having fun.
It made her feel uncomfortable and reflect on why she felt the way she did.
"Do you really want a life where there is no dancing?" she told the Sands National Conference in Christchurch during her keynote speech to a gathering of fellow bereaved parents, families, health care professionals, social workers, researchers and government agency staff this morning.
"Being a bereaved parent doesn't sentence us to a life of martyrdom ... But we can also feel hurried along in our grief. It's really hard to feel that we have permission to stay with it as long as we actually need."
There were lots of tears, tissues, hugs, scribbled notes and slow nodding heads today. Sands is a voluntary, parent-run, non-profit organisation set up to support parents and families who have experienced the death of a baby.
Hilary Barlow, a retired Christchurch Women's Hospital chaplain who herself lost three grandchildren who would all now be aged in their 30s, welcomed the gathering, an immense room of shared grief and pain.
"We all have something in common here and it all binds us together. Grief is our common language," she said.
"Out of grief, out of your grief, out of our collective grief, comes a compassion for others."
Weekes, who completed a counselling degree after the tragedy to help others who have lost a child, headlined her talk today "Rebuilding lives".
The immense grief of such extreme loss affects all aspects of a parent's life, Weekes said, including their place in the community.
Normal things like going to Plunket, coffee groups, or swimming lessons can suddenly become tricky social situations. One of the toughest questions people ask her is, "How many children do you have?"
Sometimes, she replies: "'Six, but three died'. A real conversation killer."
Other times, Weekes says three, but then is left feeling "disloyal".
And so, she often tells people she has "three at home". If they probe further, she takes it as an invitation to tell them more.
"One of the real ongoing legacies of such an extreme loss is that we are vulnerable," says Weekes, who had twins Poppy and Parker in 2013 and Gunner in late 2017. "There are so many moments that, in order to actually show who we really are, we have to expose our pain and what happened. Otherwise people don't really get the context of our lives."
She spoke about just how difficult it is to move on, and that the first step is for people to understand exactly what happened to their child.
Surrounding yourself with people who "get it" and want to help is also crucial.
Weekes clearly "gets it". And she's determined to help others through their journey of grief. She's critical of the "self-care" movement and said there needs to be an improved concept of community care.
"To put all of the pressure on the person who is traumatised, suffering, grieving and in pain, to help themselves is unrealistic and cruel, and certainly does not work into the 'village option' – that's what life is supposed to be, we are supposed to be part of a village."
There are "rainbows after storms", Weekes said, and that, with time and support, things will get better.
"There can still be pain and healing at the time," she said. "It's okay to be okay, and to let go of the martyrdom. It's okay not to be okay too."
Other speakers this weekend include bereaved parent and author Janel Atlas, journalist and endometriosis sufferer Miriama Kamo, and Professor David Tipene-Leach.
Hundreds of children die in New Zealand every year. Dr Vicki Culling, whose daughter died 21 years ago, said the Crown response to the heartbreaking numbers over that period "is not great".
She's been crusading for better, more accessible, and tailored information for bereaved parents whose children have died.
And today, the Department of Internal Affairs (DIA) announced the creation of a new website, Wheturangitia which aims to fill that void.
Named after the Māori tradition of referring to the passing of loved ones as a star that returns to the sky to join the multitude of ancestors, Wheturangitia is a joint collaboration with multiple government agencies and aims to tell bereaved parents what is available and what they can do.
For families who have suffered a miscarriage, still birth, unexpected diagnosis of a fetal abnormality, neonatal death, or infant/child death, the site has been designed to ease the pain and suffering at such a devastating time.
It includes legal information, details on the post-mortem and coronial process, financial information and entitlements, ideas and services to help create treasured memories and keepsakes of the lost child, burial requirements and information on support services including counselling and helplines.
Ray Ropata, director of DIA's Pou Arahi department, officially launched the site with a karakia that was met with an outburst of applause.
A senior adviser for the DIA's service innovation lab, Tim Kong said the website has been designed after in-depth consultation with bereaved parents.
"It's not about removing grief, it's about honouring that experience," said Kong, who tearfully told of his own experience in losing a daughter to miscarriage.
"Grief by definition is an intensely personal experience which we share with those closest to us. The Crown needs to honour that space. The Crown cannot be whānau but can be enabling to those who are."