Care for the family shouldn't stop when the child dies

By Louise Kinross

When Bruno Geremia’s son Matthew died two years ago, Bruno's sense of loss extended to the people he knew at Holland Bloorview during Matthew’s life.

“When you lose your child, you also lose your care team and the community at Holland Bloorview,” says Bruno (centre, with wife Marlene right and family leader Vivian Low left).

“When you walk through the door for the first time after, there's a sense that you don’t belong anymore. We live in a culture that doesn’t want to talk about death, especially if your child is really complex or fragile.”

Bruno and other parents want to change that.

They’re working with Holland Bloorview staff to create an annual celebration of life event and other supports.

The first event will take place in Spiral Garden on June 11. It’s for Holland Bloorview families whose child has died in the last two years. There will be photographs of the children, fun activities for the whole family, and the dedication of a piece of art. “We’re working with Spiral Garden staff to create a butterfly that will honour the children,” Vivian says. Her son Ethan died almost 10 years ago. “The plan going forward is that every year we will have the celebration and install a new piece of art.” The parents also hope to have a dedicated art work inside the hospital.

Vivian recalls that after her son died, “there was no support besides Bereaved Families of Ontario. But it’s in the community, and you have to retell your story to strangers.”

Families feel cut off from “the people who know the road we’ve travelled, and who knew our child,” Bruno says. “We believe it shouldn’t end like that.”

Bruno and Vivian, who are both members of Holland Bloorview’s family advisory, say the group has been an important ongoing connection for them. “I was lucky because June Chiu called and said ‘I hope you’ll come back and be part of the family advisory,’ Vivian says. “Sometimes it was hard, and I’d feel a little like a fraud, like my child isn’t going to any of the clinics, maybe I shouldn’t be here? There’s a fear of being an outsider.”

But Vivian says she was welcomed back. “When your child dies, you get the feeling that nobody else understands, and they can’t. That’s why it’s so important to talk to someone with the same experience, who knows what it feels like to live through that. I had June, and then Bruno and Marlene, to talk to.” Too often, Vivian says, Holland Bloorview families “don’t have that opportunity.”

To remedy this, the parents plan to set up coffee talks a couple of times a year where parents meet at Holland Bloorview to remember their kids and share support. “We’d also like to look at supporting siblings,” Vivian says. “For us, that was a huge gap when parents are struggling themselves.”

Bruno says his continued participation on Holland Bloorview’s family advisory “is a tribute to Matthew’s life. Before Matthew died, I didn’t think I’d be strong enough to do that. But after, I thought, everything I’ve learned, I’ve learned because of Matthew. This keeps him alive.”

Vivian agrees. “We’re a voice for our children and the needs of our families. Our children keep us connected to Holland Bloorview and we honour them by staying involved.

Bruno and Vivian shared these reflections that may be helpful to other parents whose child has died:

• There is no road map for grief, no time line or 12 steps. It’s individual, and you have to accept that your journey is going to be that way. It will change from day to day and year to year.
• Anniversaries, especially in the first year after your child dies, are very hard.
• Grief can ambush you when you’re least expecting it.
• Talking to other parents who’ve lost a child is soothing. You don’t have to explain anything, and if you fall apart, it’s okay.
• Counselling helps.
• Find ways to honour your child. Vivian’s family raised money for a multi-sensory room in the school her son went to, and where her daughter still attends. Bruno’s family participates in the Hike for Hospice to make people aware of the amazing care they received at Emily’s House.

Advanced care planning with a palliative care team can help families build beautiful memories with their child. “We spend so much time going to appointments, doing therapy, and for the more complex kids, just feeding them, that we don’t get to have family time,” Vivian says. “We need to be encouraged to not feel guilty about putting that aside, so we can have fun times as a family.” Bruno notes that his family cherished Thanksgiving, Christmas, birthday and Easter celebrations with Matthew while he lived at Emily’s House.

Most important, “Care for the family shouldn’t stop when the child dies,” Bruno says. “If we are family-centred, we need to continue to provide care to the family that has to go on.”

Bruno and Vivian say social workers, nurse practitioners and senior managers at Holland Bloorview are eager to participate. The other parent on the celebration of life committee is Cheryl Runstedler. You can read about Cheryl and her son Jordan here. To learn more about the June event, e-mail social worker Barb Germon at bgermon@hollandbloorview.ca.