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

January on Empowered by Hope is dedicated to something we talk about often but live out imperfectly: self-care. Or, as we prefer to name it in medical-parent reality, self-preservation — the small, necessary choices that allow us to be the parent advocates we want and need to be.

This episode opens with a deeply personal conversation as we honor Emily K. Whiting, our incredible co-founder of Parent Empowerment Network and co-host of Empowered by Hope. Emily shares her decision to pause her formal role with the organization and the podcast in order to focus fully on her family and the ongoing complex medical needs that first inspired both PEN and this podcast.

This is not an ending. It’s a season.

We name a hard truth with compassion: when hospital days, surgeries, advocacy, and parenting stack up, something has to give. Choosing family does not mean abandoning a mission — sometimes it means protecting it in a different way. Emily’s decision reflects the very values PEN was built on: discernment, courage, faith, and honoring what each season requires.

From there, we zoom out to the larger story you helped build. What began as a kitchen-table idea has grown into a global community across 18 countries. We revisit why being diagnosis-agnostic matters, why undiagnosed families must always feel fully included, and how that commitment led to one of our proudest outcomes: connecting Hardikar families worldwide, supporting expanded research cohorts, published guidance, and a first-ever family gathering. It’s one powerful example of what happens when determined moms, loving families, caregivers, and clinicians move together — faster answers, clearer direction, and a quieter kind of hope that lasts.

In true Emily & Ashlyn fashion, this episode offers listeners powerful takeaways as we get practical. If “self-care” feels like another impossible task, we rename it self-preservation: being honest with ourselves about what must be prioritized right now and what might need to be paused or tabled for a season. The mission continues with open hands.

Expect more empowering and honest conversations with medical parents who truly understand, trusted subject-matter experts and credible voices diving into the topics you’ve asked for, shared resources that make the journey a little lighter, and plenty of love, laughter, and support — the same steady presence this community is built on.

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!

New year energy can feel fraudulent when you’re parenting through hospital stays, procedures, and constant logistics. We’re trading perfection for something truer: a simple ritual to release what hurts and a short list of keepers that actually help us breathe, love, and carry on. No grand resolutions, no reinvention—just small, honest choices that hold up under real life.

We start with a plate-smashing ritual—yes, really—to mark what we’re done carrying: self-depletion, people-pleasing, and the belief that unconditional love demands self-abandonment. Then we move to what stays. Laughter on purpose, curated so it finds us even on hard days. Childlike wonder that turns clouds, stars, and tiny flowers into quick routes back to calm. Ten minutes of morning prayer for alignment when the schedule is anything but predictable. Deep breathing to reset a nervous system trained by years of fight-or-flight. A phone in the “peace and presence” basket so feeding, rocking, and bedtime become connection instead of multitasking. And self-advocacy—asking for what we need from care teams and our circle without apology.

Along the way we reframe mistakes with grace. You can name a misstep and still honor your heart. Own it, repair, and try again. That stance—gentle and steady—makes space for gratitude to grow, even in grief. We talk practical tools for caregivers of medically complex kids, from boundary-setting to micro-rest, and how to build a more regulated baseline without pretending life is easy. This is trauma-aware, faith-rooted, and deeply human.

If this conversation gave you breath or language for your own reset, follow and share it with another caregiver who needs hope. Subscribe, leave a review, and email us your “leave behind” and “keepers”—we’d love to hear what goes on your plate and what you’ll carry forward.

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!

This open conversation between co-hosts, Emily & Ashlyn, offers clear language, practical insight, and zero judgment for parents, caregivers, and anyone walking the tightrope of medical advocacy and family life.

What changes when the caregiver’s well-being becomes the foundation of the family—not an afterthought squeezed into the margins? We dig into the real-world difference between mental well-being (clear thinking, decision-making, stress management) and emotional well-being (awareness, regulation, expression), and show how both systems work together when you’re navigating complex care, hospital stays, and the relentless logistics of raising a medically complex child.

We share a raw, honest arc—from coasting on grit to running on fumes—and the moment a therapist reframed anxiety through the lens of modeling. Kids don’t just hear our words; they absorb our state. When we pause to name feelings, set a 20-minute boundary for a solo walk, or ask for help before we explode, we’re teaching emotional regulation in real time. That’s not selfish; it’s skill transmission that lifts the whole household. You’ll hear why survival mode makes “take care of yourself” feel impossible, how delayed processing can hit when the fires calm, and how grace—not guilt—creates the space to refuel without apology.

We connect the dots between caregiver health, fewer blow-ups, better decisions, calmer hospital interactions, and a higher quality of life for every member of the family. We also point you to a companion blog with expanded reasons and resources, plus a preview of our next chapter on the “how” of making change stick in a busy, unpredictable reality.

If this resonated, subscribe, share it with a friend who needs it, and leave a quick review to help other caregivers find these tools. Tell us: what’s one small refuel you can commit to this week?

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!

A powerful new anthem is available for parents walking the complex medical journey with their children. Emily Whiting sits down with singer-songwriter Gina Brooklyn to unveil "Through Every Storm," a song created specifically for the Parent Empowerment Network community that captures the heartache, hope, and profound love that defines raising a medically complex child.

The song's journey began over a year ago when Gina, moved by the mission of supporting parents through medical complexity, set out to transform Emily's heartfelt words into music. "Every second, every moment that I get to love you is such a gift," begins the lyrical journey that acknowledges both the privilege and pain of loving a child through medical challenges. What makes this collaboration uniquely powerful is how it balances hopeful realism – neither glossing over struggles nor surrendering to despair.

In a surprising twist of providence, shortly after writing this song for others, Gina found herself battling serious health challenges of her own. Following a severe COVID infection, she received diagnoses of POTS, mast cell activation disease, and hereditary alpha tryptasemia – experiences that brought new depth to lyrics like "If it rains or if it pours, His love will carry you through every storm." Gina vulnerably shares this personal journey, revealing how her own medical complexity has deepened her connection to the song's message.

"Through Every Storm" releases in late August, with 50% of all proceeds directly supporting Parent Empowerment Network's mission. A beautiful music video featuring Charlotte and Emery will follow on YouTube. Whether you're sitting at a NICU bedside, up at 2 AM with a child in pain, or simply needing a reminder that you're not alone, this song offers a musical sanctuary where weary parents can find rest. Download it, share it, and let it carry you through your own storms – while helping us continue supporting families just like yours.

Links to view and download "Every Storm": https://lynkify.in/song/through-every-storm/jD2JXqMe

YouTube Video: https://www.youtube.com/watch?v=dQ0BRnPv7nM

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!

When you’re caring for a medically complex child, you need help—but it’s overwhelming and exhausting to field the constant “Let me know how I can help,” “Just call me if you need anything,” or “What can I do for you?” messages. The decision fatigue for parents in crisis is grueling. We desperately need the help, but our supporters need a clear path that empowers them to actually be helpful.

That’s why Ashlyn sat down with Jordan Arogeti, co-founder of Support Now, to share a free support registry every family needs to know about. Most of us are already juggling donation platforms, blogs, group texts, social media pages for updates, and meal train sign-ups… but what if all your needs—meals, childcare, fundraising, prayer requests, volunteer help, and more—could live in one customizable, evolving registry? Hallelujah.

Support Now is built to be supporter-led, giving your friends and family a clear path to help. They can see exactly what you need, choose how they want to contribute, and adapt as your family’s needs change—all without adding to your plate. Unlike tools that fizzle out after a few weeks, the registry is designed for sustainable, long-term support during the toughest seasons.

This conversation is personal. Ashlyn was introduced to Jordan by PEN Board Member Abby Zachritz (aka Advocacy Abby), Support Now’s Director of Family Advocacy. Together, they’re making it easier to rally your “village” in real life, not just on social media.

If you’ve ever felt the weight of being asked “What can I do?” when you’re too exhausted to answer, this episode is for you. Hear why Parent Empowerment Network wants every family to know about this life-changing resource—and how Support Now is transforming the way communities show up for each other.

Resources from this episode:

https://www.supportnow.org/

Jordan's TEDx Talk: https://www.supportnow.org/

Support Languages Quiz: https://www.supportlanguages.com/

Advocacy Abby: https://www.advocacyabby.com

Connect - Database for Medical Expense Grants: https://grants.supportnow.org/

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!

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