York nursing Professor Christine Jonas-Simpson has always been keenly interested in loss and grief, how people experience it and how they integrate it into their lives in a continuing way. It was while doing research on daughters who had lost their mothers to Alzheimer’s disease that Jonas-Simpson experienced what she calls “the deepest loss of my life”.
Pregnant with her third child, she was conducting a series of interviews as research for the play, I’m Still Here, on loss and how it is transformed, when she lost her son Ethan. “I was just struck by how I was immersed in this phenomena and living it at the same time,” she says. I'm Still Here was co-created with York nursing Professor Gail Mitchell and playwright Vrenia Ivonoffski.
Right: Christine Jonas-Simpson, holding the children's book she wrote, Ethan's Butterflies
Ethan was stillborn at 38 weeks – or, as Jonas-Simpson prefers to say, born still – causing a rent in the universe as she knew it. After the loud silence of her delivery, she remembers hearing a primal scream of agony, realizing some moments later it was coming from her.
Almost a decade later, Jonas-Simpson is about to premiere her third research-based documentary film, Enduring Love: Transforming Loss, about how mothers and their families live with the loss of a child. The premiere will take place Sunday, May 15, from 1 to 3:30pm at the Fox Theatre, 2236 Queen St. E. in Toronto. Tickets are $25 per ticket with proceeds going to Bereaved Families of Ontario-Toronto. To buy tickets, call 416-440-0290 or e-mail email@example.com.
Enduring Love looks at the lives of four women, the agony of loss, the impact the death of their infant has had on them and their families and how they learned to live with their loss. It also traces the importance of recognizing their other children are also grieving, the continuing presence of their deceased child in their lives, the rituals they’ve developed and how they not only endured but have been transformed by their loss. Funded by York's Faculty of Health and the Health Leadership & Learning Network: Interprofessional Education Initiative Fund, the documentary answers the research question, what is the meaning of living and transforming with loss for mothers who experience the loss of their baby?
As one woman in the film says of her family, it was a “seminal event in their lives”; there was a before and an after. The women make the point that many fail to realize that losing their baby, whether at 24 weeks gestation or several weeks after delivery, is a profoundly felt loss that changes, not only them, but their husbands and their children, forever. One of the universally hard moments for these women was going home from the hospital without their baby. It feels so unnatural, says Jonas-Simpson.
It was the experience of losing her own son that guided Jonas-Simpson’s research toward providing a body of arts-based research for others who experienced perinatal loss. She had often used music in her nursing practice and research, and then began incorporating art, drama and film. “With grieving and loss it seemed appropriate to keep going with the arts.” Although, she will write papers on her latest research, she believes presenting her findings with an art-based approach makes it more accessible and touches people in a way a research paper in a journal wouldn’t. “It’s a way of showing the human experience, rather than just telling,” she says.
Being a researcher, I looked at the literature to see what was out there. I was struck by how little there was out there in light of grieving and loss about mothers’ lived experiences. My graduate student, Jennifer Noseworthy, and I are conducting a comprehensive literature review and we’ve only found a few qualitative studies focused on the human lived experience of perinatal loss.” And that moved Jonas-Simpson to conduct research and create resources for others like her.
Enduring Love is her third film. Her first was Nurses Grieve Too: Insights into Experiences with Perinatal Loss, while her second, Why Did Baby Die? Mothering Children Living with the Loss, Love and Continuing Presence of a Baby Sibling is a short made from footage shot for Enduring Love, which focuses on the surviving children. “These children have an incredible bond and relationship with the babies,” their siblings who’ve died. Jonas-Simpson recently gave a talk and showed Why Did Baby Die? at a Women's Health and Mental Wellbeing Speakers Series event at York.
Some of the children, as seen in Enduring Love, have drawn family portraits years later that have included their deceased siblings. “Grieving and loss isn’t always something we talk about openly, but it is experienced by many, if not all, of us,” says Jonas-Simpson. Even after the physical death, the relationship continues. “It’s still hidden. Perinatal loss is also disenfranchised in our society.” To help grieving children with the loss of a baby sibling, she also wrote the children's book Ethan's Butterflies.
Jonas-Simpson started talking about her own experience of losing Ethan, born with vibrant red locks, and how her other two sons, now 11 and 13, have integrated him into their lives as a way to help others. “The children integrate this loss very well,” she says. One of her children even wrote a letter to Ethan as a school assignment, asking if there are dinosaurs in heaven and if it hurt to die. The teacher may have been uncomfortable, but Jonas-Simpson says it’s important to talk about and to understand the continuing relationship following death.
Next, she is hoping to do research on children age three to 18 who are grieving a loss of a baby sibling. Children, she says, are often forgotten about, but they too grieve. “If we can be more open about grief and loss as a natural human experience and if we can begin in the schools with that,” it could be really helpful for the children, she says. She would also like to explore the common and unique threads of grieving around the world.
For more information or to view or buy Jonas-Simpson’s films, visit the Faculty of Health’s Living and Transforming with Perinatal Loss website.
By Sandra McLean, YFile writer
Republished courtesy of YFile – York University’s daily e-bulletin.