Laura (Heim) Spiegel’s daughter is painting butterflies while her mom (Class of ’02) tells me about Paint Her in Color, the website Spiegel created for parents of children with special health care needs. Spiegel’s daughter is six years old, a first grader who plays soccer and basketball, takes dance classes and art lessons. She loves playing dress up and digging for worms with her neighborhood best friend. She also has cystic fibrosis.
“Defining her as sick was something I wanted to avoid. To me, that sounded like painting a very black and white picture of who she was and what her life could be,” Spiegel says. “My job as a parent is to paint her in color, and what that looks like is not defining our kids exclusively by their health. It’s doing everything we possibly can to help them lead very long and full lives, balancing what you need to do from a day-to-day health care perspective alongside the crazy unexpectedness and vibrancy of an everyday childhood.”
This philosophy inspired the name of the site, which Spiegel created after encountering a lack of emotional support resources for parents and families with children who have chronic illnesses.
When their daughter was diagnosed with cystic fibrosis at just five weeks old, Spiegel and her husband, Jon Spiegel ’02, grappled with stress and anxiety. Cystic fibrosis is a disease that affects the lungs and can cause difficulty breathing or lung infections. It is genetic, but their daughter’s diagnosis came as a surprise, since there was no family history of the disease on either side. As they learned the best ways to provide for their daughter’s health from their medical team, they also wanted help managing the emotional side of chronic illness, both for themselves and their two children. Their son is three years older than their daughter.
“I saw a lot of clinical resources — many of which were disease-specific — but not a lot of resources were really focused on helping parents address the emotional and psychosocial side of managing a chronic condition,” she says. “So that was really the impetus behind the site — not to provide any kind of medical advice, but to put something together where parents could come to it and walk away feeling, hopefully, that they are not alone and that they can do this.”
Paint Her in Color offers tips and tools for doctor’s visits, including important questions to ask doctors, how to advocate for your child to your care team, and how to decide if a provider is a good fit for your child or family. Spiegel, who lives in Fishers, Indiana, outside Indianapolis, also works with emotional support service providers and nonprofit organizations to promote their services on her site. A blog where she and other contributors share personal stories offers inspiration and encouragement to readers, and she also prioritized a page about how to support siblings of children with chronic health care conditions, like her son.
“This was one of the pieces where I was initially looking for support, because my son knows what’s going on,” she says. “My son is only nine, but he’s experienced so many emotions, and that’s going to continue as he grows. I want to create resources that parents can use to help all the brothers and sisters out there feel seen, heard, and loved.”
The siblings page includes suggestions that Spiegel has sourced from clinical psychologists and mental health counselors and firsthand experiences from families. She believes that supporting siblings is important not only for the child without the chronic illness, but also contributes to the overall goal of not defining a family or a child by their health. Just like her daughter isn’t defined by cystic fibrosis, neither is her son defined as the brother of a child with a chronic illness.
Paint Her in Color officially launched in July 2019 and since then, nearly 3,000 families have visited the site. Others are members of the Paint Her In Color community on Facebook. Spiegel has also partnered with multiple national organizations — including Family Voices, the Caregiver Action Network, the Sibling Support Project, Cystic Fibrosis Research, Inc., and HANDS in Autism — to share their support resources.
She also works with children’s hospitals, including Riley Hospital for Children in Indianapolis, where her daughter receives medical care. Their medical experts serve as a resource for Spiegel, and in turn, hospital support staff connect parents and families to Paint Her in Color for support. She is actively working on increasing the number of partner organizations that work with Paint Her in Color, as well as the number of partner organizations and guest bloggers who share resources on the site.
Down the road, Spiegel says she wants to “shift this initiative from a passion project, as it is today, to something with a revenue stream behind it. That can help me better get the word out to those families who can benefit most from Paint Her In Color’s resources.”
Spiegel, a marketing and sociology major at Notre Dame, used to work in health care herself, at biotech company Roche, where she partnered with nurses, physicians, and clinical psychologists to help patients address the emotional and psychosocial side of managing chronic illness. She credits her time at Notre Dame for giving her the confidence to create Paint Her in Color.
“Notre Dame really imparted the importance of looking at the bigger picture and how you can apply your talents and your skills to making the world a better place,” Spiegel says. “I’m taking what I always wanted to do, which is write, and using it as a tool to help other parents realize they are not alone.”