First LIGHT | ANGELS AMONG US

on that plane ride back from Orlando, Lord began to sketch out on a legal pad the beginnings of a new project: a Web-based multimedia platform to connect the parents of seriously ill children with information, expertise, and, most important, other people who wrestled with the same issues.

“I wanted families to see they’re not alone,” says Lord. “Parents trust [other parents] and learn from them. But parents like this, in this situation, are very hard to find.”

In spring 2013, Lord left her job at WGBH in Boston. Less than a year later, she launched the Courageous Parents Network (CPN). The website offers original videos, blog posts, and podcasts that cover the scope of issues that come with caring for a seriously ill child, from bereavement to marriage health. New content goes up every month, much of it featuring families who’ve used the site’s resources. CPN is free to use and totally anonymous. Many of CPN’s referrals come from the medical community. Sarah and Steve Shaw, for instance, were pointed to it by a palliative care social worker at Boston Children’s Hospital. Residents of Burlington, Vermont, the Shaws learned in early 2016 that their 7-month-old daughter, Emerson, had Gaucher disease type 2, a fatal neurological illness. Over the next several months, the family’s life became a stream of doctor’s visits and grieving. The couple felt as if they were on an island, and a virtual community hardly seemed a way to alleviate that. But late one night, Sarah went on CPN—and what she discovered surprised her.

“It was really helpful to hear other parents articulate things we didn’t have the words for yet,” Sarah recalls. “‘Anticipatory grief’—I’d never heard of it. But that’s what I was feeling. You’re looking at your happy baby, but you’re grieving her death. It gave me context for those feelings.”

Connections like that are the very building blocks of CPN. The network can’t save a child’s life, but it can honor it by helping parents feel more empowered in the decisions they make and more comfortable with the emotions they must navigate.

“This is something that started out very personal for me,” says Lord, who uses a mix of donations and grants to fund the site’s services. “But now it’s about all the other families we’re talking with and inviting to tell their story. These people I have met and heard from are dealing with sacred, beautiful, and profound issues that are really grounding. It’s life and death, and finding meaning in the face of it.” (courageousparentsnetwork.org)

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