Parents Sharing Stories, Finding Hope
Theirs is the voice of experience: Parents on a DVD titled Sharing Stories, Finding Hope. They speak from the heart, sharing their own experience to help parents who have just learned their child has
cystic fibrosis (CF), a life-threatening genetic disease that causes chronic lung infections.
A few years ago, when a group of parents was asked to envision a perfect care system for children with CF, they agreed that a key element was parent-to-parent communication. After all, knowledgeable as the medical team may be, it's the patient and family who live with cystic fibrosis, day in and day out.
Today, through the CF Parent-to-Parent Network, families have the opportunity to support and teach each other. They have particularly focused on supporting families immediately after diagnosis.
Sharing Stories, Finding Hope was made to help these families find peace, assurance and the strength to move forward, says Tracey Blackwelder in the opening moments of the DVD. She and six other parents talk honestly about the grief they felt when their children were diagnosed, their fear and confusion, the stress on their marriage. And they speak about moving forward — learning to live with cystic fibrosis, encourage their children, support each other and work with the health care team.
Discussing the CF Bag of Hope
In addition to receiving the DVD, newly diagnosed families meet privately with parent educators, who now are part of the cystic fibrosis teaching team. "We spend an hour with each newly diagnosed family," Tracey says.
They start each visit by giving a "CF bag of hope." It holds a blanket, gift certificates for dinner and a movie, hand sanitizer, a comic book, a disposable camera, a booklet for tracking breathing treatments at home and other items.
"Each item opens an opportunity to talk about an aspect of living with cystic fibrosis," Tracey explains. "From there the conversation grows. It means a lot when you can make eye contact with another mom and say, 'I've been through this, and you can do it, too.'"
