Send us a text, we want to hear from you!

The journey of caring for a child with rare disease or complex medical needs often leaves parents and caregivers isolated in their experience. While friends and family genuinely want to help, many struggle with knowing how to truly support without overstepping or saying the wrong thing.

Amy (Board) Bradford brings her decades of experience working with rare disease communities to share powerful, actionable strategies for supporting caregivers effectively. This conversation goes beyond the typical "let me know if you need anything" platitudes to provide specific ways supporters can take meaningful initiative.

The episode reveals three foundational approaches that can transform how we show up for caregivers: first, taking time to learn the specialized medical language of a condition rather than expecting caregivers to constantly educate; second, remembering to ask about the caregiver's emotional experience rather than focusing exclusively on the child's medical journey; and third, creatively adapting environments and activities to be more inclusive without burdening families with all the planning.

As Amy shares from her experience running camps for children with bleeding disorders, "We instilled in our staff that this was a week that we would never say no to our children." This philosophy of creative problem-solving and adaptation offers a powerful model for how supporters can reframe their thinking to create more inclusive experiences.

Whether you're a friend, family member, or community supporter looking to make a meaningful difference in a caregiver's life, or if you're a caregiver wanting to help your support circle understand how to better show up for you, this episode provides the language and practical steps to strengthen these crucial connections. Send this episode to someone in your support circle today – no explanation needed.

About Amy (Board) Bradford: Amy is an accomplished patient engagement leader and global storyteller with the proven ability to build unwavering patient community connections in complex environments. She is the Director of Patient Engagement of Believe Limited, an agency dedicated to the Rare Disease, Health and Wellness, and Patient Connection and Community space.

Believe Limited, The Patient People: https://www.believeltd.com/

We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.

To get more personal support, connect with us directly at:
https://parentempowermentnetwork.org

Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

Send us a text, we want to hear from you!

Child Life Specialist, Brittany Luther, brings over twenty years of expertise to answer these questions in this emotionally powerful conversation. She explains how children naturally communicate their fears and process trauma through play—whether that's with specialized medical toys from organizations like The Butterfly Pig or simply through creative exploration with everyday items.

Brittany introduces two transformative concepts parents can immediately implement: "wonder" and "pause." By creating unhurried space to wonder with your child about their experiences and feelings, you open pathways for them to express themselves in their own time and way. This practice helps children work through medical trauma at their developmental level, restoring their sense of control and agency.

The discussion explores age-appropriate preparation strategies for medical procedures—from paper chain countdowns for preschoolers to detailed preparation plans for teenagers. Through the story of young Maren's journey with her stoma care, we see how consistent, honest communication paired with simple distraction techniques gradually transformed a painful daily procedure into a moment of empowerment and connection.

Perhaps most touching is the validation for parents who've had to perform painful procedures on their children. The guilt is real, but as Brittany and host Ashley demonstrate, these moments can ultimately strengthen the parent-child bond when approached with honesty, compassion, and support. Seeking help from child life specialists isn't a sign of failure—it's a powerful way to expand your child's circle of support and reclaim the joy of simply being their parent.

*After the episode recording, Brittany’s time was spent with a warm cup of tea and “Lemon Swirls” both in the comfort of her beautiful office and in the McGill Rose Garden for her quiet reflection and work to rest her voice!

Brittany Luther is a Certified Child Life Specialist with nearly 20 years of experience supporting children and families through medical challenges. With advanced training from Duke, Vanderbilt, and the Children’s Hospital of Philadelphia, she has worked in high-acuity settings including emergency care, oncology, and neurology. Now based in Charlotte, she combines part-time hospital work with her private practice, where she helps children, teens, and families navigate seasons of transition, diagnosis, and grief with compassion and hope.

We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.

To get more personal support, connect with us directly at:
https://parentempowermentnetwork.org

Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

Send us a text, we want to hear from you!

MaryJenner, a nurse with a creative heart, founded The Butterfly Pig after writing a children's book about embracing differences—a theme that would become central to her mission of transforming pediatric medical experiences through play. Her company creates realistic medical simulation tools that children can use with their favorite stuffed animals, helping them process everything from IV placements to ostomy care in a safe, empowering environment.

The power of these medical toys extends far beyond simple distraction. When children experience procedures as something happening to them, they often feel powerless and afraid. But when they can parallel process by caring for their own "patients," something remarkable happens—they begin to understand, cooperate, and even take pride in their medical journeys. Ashley shares how her daughter went from requiring restraint during stoma care to proudly showing her stoma to friends at school after playing with a doll that had the same equipment.

This transformation occurs because children naturally learn through play. By creating approximately 80 different realistic medical devices scaled for toys, The Butterfly Pig taps into children's innate processing mechanisms. Parents and healthcare providers report children who previously couldn't sit still during procedures becoming engaged participants when they have their own medical tools to work with. The benefits extend to siblings too, who develop understanding rather than fear when they can engage with medical equipment through play.

What began as a creative project has evolved into a movement that's changing how families experience healthcare. The Butterfly Pig has introduced a Wishful Wings program where supporters can purchase toys for families who need them, creating a community of care around children with medical needs. As Mary explains, each medical experience gives children "a different type of superpower" they can eventually use to help others, transforming challenges into strengths that shape who they become.

https://thebutterflypig.com/

https://www.instagram.com/TheButterflyPig

https://www.facebook.com/TheButterflyPig

We kindly ask that you share this podcast with other families who might benefit from our insights and support. Additionally, please take a brief moment to leave a review on your preferred podcast platform, which helps us to reach as many families as possible who are navigating this challenging journey, so they can find our support circle and access the assistance they rightfully deserve. No one should walk this journey alone.

To get more personal support, connect with us directly at:
https://parentempowermentnetwork.org

Facebook: Parent Empowerment Network
Instagram: ParentEmpowermentNetwork
Join the Parent Empowerment Network Community of Hope
Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon