235: A Mother's Journey of Love, Loss, and Resilience (crohn's and ulcerative colitis) - Kathy's Story

235: A Mother's Journey of Love, Loss, and Resilience (crohn's and ulcerative colitis) - Kathy's Story

Author: Katie Taylor, Certified Child Life Specialist November 20, 2024 Duration: 43:58

"If anybody was to ask me what is one of my biggest strengths, I have to tell them it's resilience… You can throw almost anything at me and I can handle it. I mean, there isn't anything any bigger in this world than losing a child."-Kathy

In this heartfelt episode, Katie Taylor sits down with Kathy, a mother who shares her journey of raising and caring for her daughter Lauren  through multiple medical challenges and eventual passing. Kathy's story is both heart-wrenching and inspiring. Kathy reflects on the emotional, physical, and logistical challenges of managing long hospital stays, becoming a caregiver to a child with complex medical needs, and balancing self-care amid unimaginable circumstances. Her insights on resilience, self-advocacy, and the deep bond with her daughter provide comfort and inspiration. Kathy's story is a powerful reminder of the strength it takes to navigate pediatric healthcare, turning pain into purpose, and the lasting impact of a parent's love.

"I was there when that beautiful creature wandered into my life, and I was there when she drifted out." – Kathy

Key Insights:

The Importance of Self-Care: Kathy emphasizes the need to care for oneself to better support a sick child and encourages parents to take breaks from the hospital without guilt.

Parent as Advocate: Transitioning into the role of a medical advocate for her daughter, Kathy highlights how training, learning, and persistence made a difference in Lauren's care.

Finding Strength in Connection: Kathy discusses the vital role of family, friends, and small acts of kindness in sustaining her during Lauren's long hospital stays.

Maintaining Normalcy: From packing business-casual clothes to involving Lauren in picking outfits, Kathy underscores the importance of preserving a sense of normalcy amid medical chaos.

Legacy of Resilience: Kathy's advocacy didn't end with Lauren's passing; she continues to support others by sharing her story and working on resources for long hospital stays.

 

A HUGE thank you to our sponsors: 

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Resources and Tips:

Support Spot App: Tailored guidance for families navigating medical experiences. Learn more

Support Win Win Charity's mission of bringing smiles to children, families, and hospital staff nationwide. Join us to celebrate 12 years of inspiring performances, powerful stories, and magical moments. 
 
For a minimum donation of just $12, you can access Win Win Charity's 2024 Telethon fundraiser show in honor of our 12 years of bringing smiles to children in hospitals nationwide!
 
Join the celebration featuring our 2024 "Entertainer of the Year" Tom Pesce, our 2024 "Hospital of the Year" Le Bonheur Children's Hospital, and our first-ever documented patient journey.
 
There are two ways to join the experience on December 2nd! 
 
#1 Attend virtually on LeaderPass from anywhere in the world with a virtual pass.
 
#2 Come to our in-person watch party at The Beverly Theater in downtown Las Vegas. We have a special surprise performance at our rooftop reception following the Telethon for those attending in Las Vegas.
 
Simply donate $12 (or more), and we'll see you there!
 
Reserve your spot: https://winwintelethon.com/

 

When parents feel empowered, everyone wins – kids thrive and the care team excels!

Links and Resources:

  • 85% of users report high satisfaction, appreciating the Child Life On Call App's comprehensive resources and user-friendly interface.
  • 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better.
  • 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child.
  • 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare

Learn more here.

Meet the host: 

Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.

Instagram.com/childlifeoncall

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

 

 


Hosted by Katie Taylor, a Certified Child Life Specialist, Inside the Children's Hospital is a quiet space for the often unspoken journey of pediatric illness. This podcast moves beyond the clinical to explore the human heart of the hospital, offering conversations that feel more like a shared cup of coffee in a waiting room than a formal interview. You'll hear directly from parents and caregivers who articulate the complex mix of fear, resilience, and love they experience, while pediatric nurses, doctors, and therapists provide their unique professional perspectives on fostering healing and normalcy. The discussions naturally delve into the practicalities of family life disrupted, the emotional weight carried by all involved, and the small, profound moments of hope that sustain people. It’s a resource for anyone connected to a child’s health challenge, whether you're a family member seeking solidarity, a friend looking to understand, or simply someone interested in the intersection of medicine and humanity. Each episode aims to validate the listener's own feelings, whether they are in the midst of a crisis or reflecting on one, by presenting these authentic narratives without sugarcoating yet always with profound compassion. Tune in to find a sense of community and a deeper appreciation for the delicate, powerful work happening within those walls.
Author: Language: English Episodes: 100

Inside the Children's Hospital
Podcast Episodes
From Pharmacist to Mom: Navigating Type 1 Diabetes and Celiac Disease [not-audio_url] [/not-audio_url]

Duration: 40:48
What happens when the healthcare professional becomes the parent sitting on the other side of the diagnosis? In this episode, Katie Taylor sits down with Melissa Apa—a clinical pharmacist, diabetes educator, and mom—to s…
A NICU Dad Story: Life After a 25 Week Premature Birth [not-audio_url] [/not-audio_url]

Duration: 49:52
"I kept telling her, 'We've got this.' And inside, I had no clue what was coming next." What does it look like to be "the strong one" when your world is falling apart? In this episode, Katie Taylor sits down with Jared M…
Trisomy 13: Challenging the Narrative and Choosing Hope [not-audio_url] [/not-audio_url]

Duration: 59:45
What happens when a diagnosis labeled "lethal" doesn't tell the full story? In this episode of Inside the Children's Hospital, Katie Taylor sits down with Nicole, a mom of five, who shares her daughter Charlotte's journe…
NICU, Trach and Home Care: One Family's Journey to Stability [not-audio_url] [/not-audio_url]

Duration: 50:41
What does it look like when life changes in an instant—and a family learns to navigate the unimaginable? In this episode of Inside the Children's Hospital, Katie Taylor sits down with Marah, a mom of four, who shares her…
When a Parent Has Cancer: What Kids Understand Before We Say It [not-audio_url] [/not-audio_url]

Duration: 47:03
What happens when your child already senses something life-changing—before anyone has found the words to say it out loud? When serious illness enters a family, children often understand more than we realize. And for care…