Summary: "I Couldn’t Save Her: Losing My Daughter Changed Everything"
A Grief Podcast by Bright Sighted
Release Date: April 10, 2025
In the poignant episode titled "I Couldn’t Save Her: Losing My Daughter Changed Everything," host Gabriel engages in a deeply emotional conversation with Deborah Waffle, the author of Grief Jar and mother of Kelsey, whose tragic passing profoundly impacted Deborah’s life. This episode delves into the harrowing journey of grappling with chronic illness, the frustrations of the medical system, and the enduring strength of a mother's love.
1. Introduction to Deborah and Kelsey
Gabriel introduces Deborah Waffle, highlighting her role as a schoolteacher and a dedicated mother to Kelsey and Brendan. Deborah shares an affectionate portrayal of Kelsey’s vibrant childhood, marked by her creativity, athleticism, and sociability.
Notable Quote:
Deborah Waffle [02:28]: "Kelsey, at that young age was so energetic, just so full of life, and she was very creative and artistic. She was always making something and she would make cards and presents."
2. Early Health Concerns and Initial Diagnosis
The conversation traces back to Kelsey's infancy when she experienced a severe fever at two months old, leading to a diagnosis of a urinary tract infection (UTI). Deborah reflects on the initial signs of Kelsey's health struggles and the lack of immediate understanding of her condition.
Notable Quote:
Deborah Waffle [03:46]: "They just gave her antibiotics, sent her home. You know, it wasn't a big deal."
3. Escalation of Health Issues and Seeking Answers
As Kelsey grows, her chronic illnesses intensify, particularly around the age of five when she experiences multiple UTIs and significant pain during daily activities like using the bathroom. This period marks the beginning of Deborah’s relentless pursuit of answers, leading her to research and eventually identify vulvodynia as a key issue.
Notable Quote:
Deborah Waffle [06:17]: "When I stumbled upon the word vulvodynia... I just knew instantly, without a doubt, that that's what Kelsey had."
4. Frustrations with the Medical System
Deborah candidly discusses the challenges she faced within the medical community, including dismissive attitudes from specialists and the emotional toll of relentless doctor visits without substantial progress. Her frustration peaks when major medical institutions fail to provide a comprehensive diagnosis, despite Kelsey's worsening condition.
Notable Quote:
Deborah Waffle [11:54]: "But that just isn't how it worked."
5. Discovery of Multiple Diagnoses
The narrative progresses to reveal the complexity of Kelsey's health issues, including the unexpected diagnosis of small fiber neuropathy and the later consideration of cystic fibrosis. Deborah expresses anger and disappointment over missed diagnoses that could have potentially altered Kelsey's treatment and quality of life.
Notable Quote:
Deborah Waffle [18:02]: "It made me very angry because the doctor... said, why wasn't she on digestive enzymes for her pancreas."
6. Kelsey's Life Amidst Illness
Despite her health struggles, Kelsey strives for independence, taking on jobs and living on her own. However, the relentless pain and medical appointments take a significant toll on her ability to sustain employment and social relationships. Deborah emphasizes the internal conflict of wanting to support her daughter’s independence while fearing for her well-being.
Notable Quote:
Deborah Waffle [24:25]: "She was probably deemed disabled, maybe around 25... her pain was worse at night."
7. The Final Summer and Kelsey's Passing
The episode reaches a heartbreaking climax as Deborah recounts Kelsey's deteriorating health in her final summer. Despite ongoing medical consultations and new potential leads, Kelsey succumbs to a bowel impaction that leads to fatal complications. Deborah grapples with guilt and the haunting "what ifs" surrounding her daughter's untimely death.
Notable Quote:
Deborah Waffle [28:08]: "Nothing that anybody ever indicated... never, ever occurred to me that her symptoms could cause her to die."
8. Coping with Loss and Seeking Closure
In the aftermath of Kelsey's passing, Deborah reflects on her overwhelming grief and the persistent self-blame that accompanies such a loss. She underscores the difficulty of reconciling with the reality that despite her unwavering efforts, she couldn't save her daughter.
Notable Quote:
Deborah Waffle [28:30]: "I would say that in the beginning, I totally blamed myself... it was never a consideration."
9. Insights and Advice for Others on a Grief Journey
Drawing from her experience, Deborah offers heartfelt advice to parents facing similar struggles. She emphasizes the importance of advocating for one's child, seeking comprehensive diagnoses, and finding support within the community. Deborah also highlights the advancements in medical understanding that emerged post-Kelsey's passing, offering a glimmer of hope for future patients.
Notable Quote:
Deborah Waffle [19:27]: "If people are not getting answers that small fiber neuropathy is something that they're finding to be much more common than they originally thought."
10. Conclusion: The Enduring Bond and Legacy
The episode concludes with a tribute to Kelsey's memory, underscoring the unbreakable bond between mother and child. Deborah's story serves as a testament to resilience, love, and the relentless pursuit of healing amidst profound loss.
Notable Quote:
Podcast Host [30:17]: "Her story is one of unbreakable love, immense strength, and that unbreakable bond between a mother and child."
Final Thoughts
"I Couldn’t Save Her: Losing My Daughter Changed Everything" is a moving exploration of grief, perseverance, and the complexities of navigating chronic illness within the family. Deborah Waffle's candid narrative offers invaluable insights and serves as a beacon of hope for those grappling with similar tragedies, reminding listeners of the enduring power of love and the importance of never giving up the fight for answers.
Additional Resources:
- Deborah Waffle's Book: Grief Jar – A resource for those navigating the tumultuous journey of loss and finding ways to channel grief into positive action.
- Cystic Fibrosis Foundation: For information and support related to cystic fibrosis and associated conditions.
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