Podcast Summary: "Finding Hope: Raising a Child Lost in a Complex Medical System"

Podcast Information:

• Title: Don't Cut Your Own Bangs
• Host/Author: Danielle Ireland
• Episode: Finding Hope: Raising a Child Lost in a Complex Medical System
• Release Date: March 13, 2023

Introduction

In this poignant episode of "Don't Cut Your Own Bangs," Danielle Ireland sits down with Ashlyn Thompson, the co-founder of Charlotte's Hope Foundation, alongside co-founder Emily Whiting. The conversation delves deep into Ashlyn's personal journey navigating the complexities of raising a child with a rare medical condition, Emory's bladder exstrophy. The episode offers heartfelt insights into advocacy, mental health, and the transformative power of hope amidst adversity.

Ashlyn's Personal Journey and Emory's Diagnosis

Ashlyn begins by sharing the emotional turmoil following her daughter Emory's diagnosis with bladder exstrophy at 27 weeks pregnant. The rarity of the condition—affecting approximately 300 children annually in the U.S.—posed significant challenges, including limited resources and specialized care.

[01:41] Ashlyn Thompson: "She's here, and she's perfect, and we're exactly where we're supposed to be today because of this journey."

Ashlyn candidly discusses her initial feelings of self-blame and the arduous path to understanding that Emory's condition was a fluke, alleviating her guilt and setting the foundation for her advocacy work.

The Founding of Charlotte's Hope Foundation

The conversation transitions to the creation of Charlotte's Hope Foundation, established to honor journeys of families facing rare medical complexities. Ashlyn and Emily emphasize the importance of connecting with others who share similar experiences, fostering a supportive community.

[10:22] Ashlyn Thompson: "It was my first experience of talking to somebody who could feel with me versus for me. And I learned the power of that in that moment."

Ashlyn recounts the critical moment when reaching out to Emily provided the emotional support she desperately needed, highlighting the foundation's mission to be a beacon for others navigating similar paths.

Advocacy and Navigating the Medical System

A significant portion of the discussion centers on Ashlyn's role as an advocate for her daughter within the medical system. She shares harrowing experiences of medical errors and the subsequent fight to ensure Emory received the necessary care, including overseas surgery.

[39:58] Ashlyn Thompson: "I was going to have to go to bat for her multiple times a day, every day. And that I was going to have to challenge people who have way more letters after their name than I ever want to have after mine."

Ashlyn emphasizes that advocacy stems from unyielding love and the necessity to champion her child's well-being against systemic obstacles.

The Duality of Hope and Pain

Danielle and Ashlyn explore the delicate balance between embracing hope and acknowledging pain. They discuss how redefining hope is crucial, ensuring it remains a source of strength without negating the real trauma experienced.

[17:58] Emily Whiting: "We are emotional beings first who develop the cognitive ability to think and reason and recognize patterns and all of that. We're feeling beings who think, not thinking beings who happen to have these inconvenient feelings."

Ashlyn references Snyder's Hope Theory, which posits that maintaining hope—without rigid definitions—is vital for parents handling their child's diagnoses. She underscores the importance of allowing space for both hope and pain to coexist.

Mental Health and Personal Resilience

The episode delves into Ashlyn's mental health journey, including her use of EMDR therapy to process trauma. She shares her struggles with PTSD following medical oversights that endangered Emory's life.

[42:24] Ashlyn Thompson: "I had very severe PTSD after Emory's hospital stay because part of my advocacy journey was jump-started by the fact that Emory almost died twice that first night due to completely accidental errors."

Ashlyn candidly discusses her coping mechanisms, including embracing meditation and finding solace in simple pleasures like dark chocolate, which serves as her "daily vitamin."

The Power of Community and Support Systems

Ashlyn highlights the indispensable role of her support system, including family and newfound friendships through advocacy. She contrasts the different types of support received from close family versus peers like Emily, who understand her unique struggles without added pressure.

[26:13] Emily Whiting: "Because, it's like a muscle I have to constantly actively work on. One, to give myself credit and two, to trust it."

This mutual understanding within the community fosters a space where parents can share burdens without feeling guilty or responsible for others' emotions.

Embracing Vulnerability: "Don't Cut Your Own Bangs" Moment

In a deeply personal segment, Ashlyn recounts her pivotal "Don't Cut Your Own Bangs" moment—a realization that prioritizing her mental health over rigidly adhering to unhealthy behaviors is crucial.

[60:40] Ashlyn Thompson: "Looking back now, I can see no wonder. This was my rock bottom... that was finally my aha moment was when I got to what should have been my breaking point."

This moment catalyzed her recovery from disordered eating, highlighting the episode's overarching theme of embracing vulnerability and self-compassion.

Conclusion: Carrying Forward with Hope and Advocacy

The episode concludes with Ashlyn reflecting on her ongoing mission to support other families through Charlotte's Hope Foundation. She envisions expanding the foundation internationally, providing a comprehensive resource library, and initiating early advocacy support for newly diagnosed families.

[33:30] Emily Whiting: "But, yeah, that is a big deal because you're still also in it. Like, you're not... that's really powerful."

Ashlyn's unwavering love and dedication drive her commitment to transforming her pain into purpose, ensuring that no family feels isolated in their journey.

Notable Quotes

• Ashlyn Thompson [03:16]: "You took 300 kids and you put them in a room, and you tell me that's small. Again, like, no way."

• Emily Whiting [08:34]: "Trauma is a trauma forever."

• Ashlyn Thompson [17:27]: "It's a balance."

• Emily Whiting [30:19]: "The only thing required is presence."

• Ashlyn Thompson [48:01]: "It's just the only thing I need to do."

Key Takeaways

• Advocacy as a Lifeline: Ashlyn's journey underscores the critical role of parental advocacy in navigating complex medical systems, especially for rare conditions.

• Balancing Hope and Reality: Embracing hope without dismissing the accompanying pain allows for resilience and sustained support.

• Importance of Community: Building and relying on a supportive community can alleviate feelings of isolation and provide necessary emotional backing.

• Mental Health Awareness: Acknowledging and addressing mental health challenges is essential for caregivers managing the dual responsibilities of parenting and advocacy.

• Transforming Pain into Purpose: Personal trauma can be harnessed to create meaningful support systems that benefit broader communities facing similar struggles.

For listeners seeking more information about Charlotte's Hope Foundation or Emily's book, refer to the show notes for relevant links and resources.