When Laura Spiegel’s daughter was diagnosed with cystic fibrosis, it altered the course of her entire family’s lives. But she also found the diagnosis limiting and it led her to create Paint Her In Color, a community-based website that supports the “emotional well-being in parents of children with heightened healthcare needs.”
In her own words: “I have tried to hold myself and the friends and family that surround us to one key principle. My daughter has cystic fibrosis, but that alone does not define her. Defining her exclusively by her health—or attempting to center our family entirely around it—seems so limiting. Like capturing black and white alone in a world full of color. My daughter loves playing soccer, looking for ladybugs, and telling spooky stories. She also has cystic fibrosis. And me? I’m going to paint her in color.”
A highly successful businesswoman in her own right, Laura used the expertise, intelligence, and capabilities that had been instrumental in her professional success to help in the fight to find a cure for CF. She joined advisory boards at hospitals and nonprofits, though the boards were not limited exclusively to cystic fibrosis. And as she’d sit with other parents of children with special healthcare needs (CSHSN), common themes arose in terms of struggles beyond the physical and medical requirements for their children.
The common themes from all those conversations? Those are the topics Paint Her In Color covers. “How can you do all you can to keep your child healthy yet not define them by their illness?” she says. If there are siblings involved, “How can you help a brother or a sister feel seen and heard and loved, especially if I [the parent] can’t balance the time? How do you start conversations with kids? What’s age-appropriate?” The theme of advocacy is writ large, navigating the waters of conversations with healthcare providers in high stakes situations like “How do you advocate, connect and speak up for your child?”And it’s not just questions regarding the children, there’s the spousal relationship too. After all, you are two different people coming from two different histories, so surely you have unique ways of dealing with the weight of a serious diagnosis.
Spiegel’s work and website have reached 20,000 families in 80 different countries so far. But there is still so much work to be done. According to the Health Resources and Services Administration, “nearly 20% of U.S. children under 18 live with a special medical, developmental, or behavioral health care need.” To continue to reach as many families as possible, she is always seeking to grow the guests who share their stories. These guests needn’t be writers by trade! Everyone has a story, and Spiegel is here to help you tell yours. Another way to offer support is partnerships with nonprofits. While Paint Her In Color has partnered with 20 nonprofits so far, local Indy collaborations are welcome.
If you would like to get involved, and/ if you have a story to share, you can reach Laura directly at firstname.lastname@example.org.