“The reason grief can be so hard is because it can feel so isolating,” Julia Ong reflected while discussing the 2021 death of her younger child, Avery. Even before their daughter died, the Newton resident and her husband, Jordan Bray, experienced the crushing weight of grief upon learning the baby’s diagnosis.
When the couple found out Avery had a neurodegenerative disorder and there was a “zero-percent chance of her having a life where she could thrive,” they were devastated and faced many daunting decisions about their daughter’s bleak future.
They soon learned about a Newton-based nonprofit, the Courageous Parents Network (CPN). The organization, which in 2024 is marking its 10th anniversary, “orients and empowers parents and others caring for children with serious medical conditions, by providing resources and tools that reflect the experience and perspective of other families and clinicians,” according to its website.
Helping families experiencing grief and loss, CPN has a message for those using the website: “Please know this: You are not alone. We have been there too.”
The group’s founder, Newton resident Blyth Lord, became a lifeline for Ong after she learned that Lord, too, had lost a baby – her daughter, Cameron — to an incurable genetic illness in 2001.
“There is something that is so … valuable in talking to someone else who has gone through that painful and traumatic experience of child loss,” said Ong. “It was comforting to speak with Blyth.”
Noting there are few resources for parents, extended families, and friends going through this difficult situation, she said, “To have CPN and to have it be local … it’s incredible.”
Ong and Bray turned to the nonprofit to find out more about palliative, hospice, and end-of-life care for their child and connect with others who could understand what they were going through.
“I want other families to know of this resource,” said Ong.
Taking time to talk
For more than a decade, Lord has been advocating for and speaking with parents coping with the worst kind of experience and loss.
“I have so many emotions around [CPN’s anniversary]. It’s hard to believe that I started Courageous Parents Network 10 years ago,” she reflected.
When asked if hearing so many sad stories was difficult for her and if it felt like reopening old wounds, Lord said, “No, it’s not difficult. It feels like a privilege. It’s not easy, but I don’t find it difficult. I have discovered that I have an … aptitude to talk with parents who are doing this very, very difficult thing.”
CPN collaborates with clinicians, parents, and patient advocacy groups to develop content that supports families, friends, and caregivers of children with serious illnesses. The organization has developed a wide variety of guides, videos, and more resources that are available on the organization’s website.
“We are parents partnering with parents,” said Lord.
Asked why mothers and fathers who have gone through some of the most heart-wrenching experiences of their lives decide to speak with and create videos for CPN, Lord cited several reasons.
She said they trust the group because, “We are people who have been there”; they want to tell their story because it is therapeutic and helps them make sense of a very difficult situation; they aim to assist other parents; and they hope to help clinicians better understand families’ needs so they can provide improved care.
Looking to the future, Lord said CPN aims to diversify its demographic, cultural, and geographic reach.
The group also has started a program called “Parent Champions,” who are advocates for palliative care.
“Through this program, CPN is leveraging our existing expertise in championing pediatric palliative care to healthcare providers and patient organizations to bring palliative-informed, family perspectives to more families, clinicians, and patient organizations nationwide,” as stated on CPN’s website.
Expanding wealth of information
Over the past 10 years, CPN has increased the number of topics covered on its website — and the video, audio, and guide libraries are growing.
“I think the videos really spoke to me because it’s coming straight from the mouths of the families that are experiencing it,” said Ong.
Lord said that the process of tackling each new topic involved asking questions on that issue during family interviews, interviewing a clinician with expertise in that area, and creating videos, audio programs, and guides that are reviewed by or coauthored with experts.
Themes covered by CPN’s videos include: Financial planning; working with a medical team; information on specific illnesses; clinical trials; helping a caregiver take care of themselves; helping family members like siblings and grandparents cope; preparing for the end of life; anticipatory grief; and palliative care, to name a few. The videos feature both medical professionals and parents who have experienced having a child with a life-threatening or terminal illness.
There are 51 videos alone under the topic, “How Palliative Care Helps.” In one such feature, parents describe how to advocate for children when they’re experiencing pain, and a doctor discusses how medical professionals need to listen to their patients when they’re in distress.
In another video, a palliative care doctor describes learning how to speak the “child’s language” after treating a young patient and helping children understand about their illnesses.
“It’s finding out who that child is from the inside out,” said Dr. Erin Flanagan, a palliative care doctor featured in a video. She said it was important to not only treat the illness, but also to learn what brings the patient joy and comfort.
Many of the videos address parents’ fears about palliative care and clarify that it is “an extra layer of support.”
“It is about helping the children and family thrive in the here and now. Palliative care isn’t about giving up. It’s about making the most of the time we have. Not all children are going to get better. You have to be OK in the in-between,” stated one video in the palliative care library.
Videos on another featured topic — unconscious bias in medicine — address the historical racism in medicine.
People of color in the U.S. have experienced disenfranchisement by the medical system, said Lord.
“We wanted to shine a light on how that might be showing up for parents of color,” said Lord. “We know that if you are a Black mother who is advocating for your child and you raised your voice …. [staff] might call security [and stereotype you as] ‘an angry Black woman.’”
Videos feature the voices of clinicians who are working to build awareness of unconscious bias and discuss what can be done to recognize and address it, she said.
With its expanding offerings and programs, CPN will continue pursuing its mission into the future: “To empower, support, and equip families and providers caring for children with serious illness.”