Pregnant with her third child, she was conducting a series of interviews聽as research for聽the play, , on loss and how it is transformed, when she lost her son Ethan. 鈥淚 was just struck by how I was immersed in this phenomena and living it at the same time,鈥� she says. I'm Still Here was co-created with 91亚色 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 鈥� or, as Jonas-Simpson prefers to say, born still 鈥� 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, 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 info@bfotoronto.ca.

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聽how they learned to live with their loss. It also traces聽the importance of recognizing their other children are also grieving, the continuing presence of their deceased child in their lives, the rituals they鈥檝e developed and how they not only endured but have been transformed by their loss. Funded by聽91亚色's聽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 鈥渟eminal event in their lives鈥�; 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鈥檚 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聽and film. 鈥淲ith grieving and loss it seemed appropriate to keep going with the arts.鈥� Although, she聽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鈥檛. 鈥淚t鈥檚 a way of showing the human experience, rather than just telling,鈥� 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聽about mothers鈥� lived experiences. My graduate student, Jennifer Noseworthy, and I are conducting a comprehensive literature review and we鈥檝e only found a few qualitative studies focused on the human lived experience of perinatal loss.鈥� And that moved Jonas-Simpson to conduct research and create resources for others like her.

Enduring Love is her third film. Her first was , while her second, is a short made from footage shot for聽Enduring Love, which focuses on the surviving children. 鈥淭hese children have an incredible bond and relationship with the babies,鈥� their siblings who鈥檝e died. Jonas-Simpson recently gave a talk and showed Why Did Baby Die? at a聽Women's Health and Mental Wellbeing Speakers Series聽event at 91亚色.

Some of the children, as seen in Enduring Love, have drawn family portraits years later that have included their deceased siblings. 鈥淕rieving and loss isn鈥檛 always something we talk about openly, but it is experienced by many, if not all, of us,鈥� says Jonas-Simpson. Even after the physical death, the relationship continues. 鈥淚t鈥檚 still hidden. Perinatal loss is also disenfranchised in our society.鈥� To help grieving children with the loss of a baby sibling, she also wrote the children's book .

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. 鈥淭he children integrate this loss very well,鈥� 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鈥檚 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. 鈥淚f we can be more open about grief and loss as a natural human experience and if we can begin in the schools with that,鈥� it could be really helpful for the children, she says. She would also like to explore the common and聽unique threads of grieving around the world.

For more information or to view or buy Jonas-Simpson鈥檚 films, visit the Faculty of Health鈥檚 Living and Transforming with Perinatal Loss website.

By Sandra McLean, YFile writer

Republished courtesy of YFile 鈥� 91亚色鈥檚 daily e-bulletin.

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From the moment their child dies, parents are faced with the two extremes of loss and life 鈥� the suffocating loss of a child and the ongoing, daily demands from their surviving children, says Fleming, co-author of the recently published book, Parenting After the Death of a Child: A Practitioner's Guide.

"The challenge that parents face is this: In the midst of grief, how do you stop parenting the deceased child while you are simultaneously struggling to meet the parenting needs of the children who remain?"

Fleming, a psychology professor in the Faculty of Health at 91亚色, and co-author Jennifer Buckle [MA 鈥�98, PhD 鈥�03], now a professor at Memorial University, did the research for the book when Buckle was a graduate student at 91亚色. Their research is based on in-depth interviews with parents who had lost a child and had one or more surviving children.

The about the study is available in the Research News section.

Posted by Elizabeth Monier-Williams, research communications officer, with files courtesy of YFile 鈥� 91亚色鈥檚 daily e-bulletin.

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From the moment their child dies, parents are faced with the two extremes of loss and life 鈥� the suffocating loss of a child, and the ongoing, daily demands from their surviving children, says Fleming, co-author of the recently published book, .

鈥淭he challenge that parents face is this: In the midst of grief, how do you stop parenting the deceased child while you are simultaneously struggling to meet the parenting needs of the children who remain?鈥�

Fleming and co-author Jennifer Buckle (MA 鈥�98, PhD 鈥�03), now a professor at Memorial University, did the research for the book when Buckle was a graduate student in the Faculty of Health at 91亚色. Their research is based on in-depth interviews with parents who had lost a child and had one or more surviving children.

They found bereaved parents do not 鈥渞ecover鈥� from the loss. Instead, bereaved parenting is an act of regeneration 鈥� picking up the pieces in the face of the devastation, and regenerating both a sense of self and a sense of the family.

鈥淒ads tend to be instrumental grievers. They go back to work, commit to working for the family and they tend to overcome the fear of putting their children out into an unsafe world sooner than moms do,鈥� says Fleming. 鈥淢oms tend to be more intuitive grievers, more focused on internal feelings, and they have an almost paralyzing fear that if one child can die, another could die as well. So, often, moms are dragged back into parenting by the surviving children.鈥�

Left: Stephen Fleming

Parenting After the Death of a Child, published by Routledge, fills a gap in the research about the impact of a child鈥檚 death, because it focuses not only on the grief experienced, but on the balancing act of grieving and parenting at the same time. A clinical psychologist, Fleming says he hopes the guide will educate counsellors about the importance of looking for psychological complications in mourning the loss of a child 鈭� for example, depression, generalized anxiety disorder and post-traumatic stress disorder. Too often, parents are not assessed for these reactions, and they may be traumatized by images of their child鈥檚 death or illness and re-living it, he says.

The qualitative research and excerpts from the parents who were interviewed are also intended to help bereaved parents deal with the expectations they put on themselves and those imposed by the outside world. The research reassures parents, for example, that it is healthy to honour the role of the deceased child in the family by continuing to talk about the child with the surviving siblings.

It may also offer comfort by busting myths 鈥� for example, the myth that losing a child increases the likelihood that parents will divorce and that surviving family members will be split up. Roles change and parents often struggle to be consistently present physically and emotionally for their children, Fleming says, but bereaved parents rebuild their lives because their children need it.

Republished with files courtesy of YFile 鈥� 91亚色鈥檚 daily e-bulletin.

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Opinions on the subject have shifted from the days when children weren鈥檛 expected to attend funerals at all. 鈥淎 large part of it was trying to protect them,鈥� says Stephen Fleming, professor of psychology in 91亚色鈥檚 Faculty of Health and a consultant to Bereaved Families of Ontario 鈥� Toronto, 鈥渁nd I don鈥檛 think that鈥檚 necessarily the best way to proceed.鈥�

A two-year-old like Nolan will understand very little at a funeral, but attending one may help in the grief process down the road. 鈥淭he chance of the child being traumatized in the worst case scenario, or being able to recall a whole lot, is very slim,鈥� says Fleming.

To make the day easier, children should be allowed to interact with the proceedings in an age-appropriate way, Fleming says. They may want to write a letter, or place something inside the coffin.

Kids should also be free to be kids. At an open-casket visitation, children should be allowed to touch the body if they are curious, and free to play during the funeral, Fleming says. 鈥淭hey don鈥檛 know what mourning behaviour is鈥� 鈥� and that鈥檚 okay.

Once children are eight or nine years old, their understanding of death deepens. Younger children don鈥檛 comprehend that death can鈥檛 be reversed, or that it happens to everyone. 鈥淎s children age, they grapple with and eventually get these types of concepts,鈥� he says.

Above all, says Fleming, keep open lines of communication. When kids are left in the dark about important but scary events like the death of a loved one, they tend to 鈥渇ill the gaps in their understanding, usually with things that are much more threatening.鈥�

Posted by Elizabeth Monier-Williams, research communications officer, with files courtesy of YFile鈥� 91亚色鈥檚 daily e-bulletin

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