(page 2 of 2)
The goal of CPN is to address a few key questions, she explained: “What can we do to give parents confidence that they can survive this? What can we do to help them understand what is happening to them, to begin to tell their child’s story, to lessen the dread they feel about their child’s end of life, to free them up to be more present with their child?”
While parents of critically ill children have long been going online for information and support, many sites geared toward this group are disease-specific, with a focus on research and symptom management; others serve mainly as peer-to-peer support networks. The Courageous Parents Network, however, transcends diagnosis, includes a mix of personal stories and professional perspectives and is unique in its focus on building a comprehensive video library for this audience.
The effort has been buoyed by an unusually large anonymous donation of $450,000 over three years. Even Lord does not know who provided the cash infusion.
That funding has permitted Lord, together with a film crew, to travel across the country to produce the site’s videos. It also enabled her to hire Nancy Frumer Styron, a Boston-area pediatric psychologist who is featured in many of the videos, as the site’s content director.
Plans are also underway to host a series of topical webinars and live chats with grief counselors and other special guests.
Oralea Marquardt said she went public with her story to ease the sense of isolation other parents feel. There’s an aversion to talking about death — specifically the death of a child, she told the Forward, and that can make families of terminally ill children “feel not normal and alone in this process.” “You get people making comments, like ‘At least you have two other children’ and others who just remove themselves entirely from your life,” the mother of three said.
Jennifer and Joe Salazar, of San Antonio, Texas, also agreed to be interviewed for the website. As they talk to the camera — on subjects ranging from their early denial to making time for their well children — their wheelchair-bound daughter, Mallory, sits between them.
Mallory, 7, suffers from juvenile Tay-Sachs, the rarest form of that disease. (NTSAD estimates that, nationwide, there are 12–15 new cases a year of infantile Tay-Sachs, 3–5 new cases of late onset Tay-Sachs, and 1–3 new cases of juvenile Tay-Sachs, which is diagnosed in early childhood.) What many who haven’t been there don’t understand “is that the diagnosis itself comes with a certain amount of grief,” leaving parents bereaved even while their child is still alive, Jennifer Salazar, 36, told the Forward.
Lord said she understands that the digital model for the Courageous Parents Network has its limitations: It’s one-directional, and there’s no guarantee that virtual support will be helpful in real life. Still, she sees in it tremendous potential. She is particularly intent on highlighting how the benefits of palliative care and grief counseling during the course of the child’s illness could help “minimize regret and maximize healing” later on.
“When a child is dying, parents may not be in a situation where they can leave home or the hospital, or they are just not going to seek out help,” said Frumer Styron, who is also the clinical director at the Children’s Room, a bereavement center in Arlington, Massachusetts. “Going online is a mixed bag, but it’s an important resource, and one that’s available to many people when they can’t or don’t want to access resources in any other way.”