Child Life On Call: Parents Of Children With An Illness Or Medical Condition Share Their Stories With A Child Life Specialist

When Camryn’s fearless 4-year-old suddenly became anxious, her gut said something deeper was wrong. Multiple “all clear” evaluations followed—until a post-virus crash at age 6 that led to a diagnosis under the PANS/PANDAS umbrella (autoimmune encephalitis). Camryn shares how a steadfast pediatrician, early referrals, and balancing clinical guidance with peer support helped her daughter reclaim everyday life—right down to summer swim league. She also opens up about protecting her child’s privacy, supporting siblings, starting trauma therapy, and building margin for joy. This is a masterclass in parental advocacy, nervous-system care, and creating a trusted circle around your child. Y Resources mentioned   PANDAS Parents (national Facebook community) — peer support and practical tips. ASPIRE (clinical education & navigation for PANS/PANDAS). MomBrain.com — anonymous Q&A platform for moms (Camryn is co-founder). School-based supports (counselor, principal, buddy programs) for siblings.  

In this reposted episode, Courtney shares her journey of receiving her daughter Annie’s Trisomy 21 diagnosis, navigating the NICU, and walking through open-heart surgery complicated by pulmonary hypertension. She talks about the power of community, the unexpected strength she discovered in herself, and how vulnerability and advocacy have shaped her motherhood. Courtney reminds us that love, connection, and collective wisdom can carry families through the hardest seasons while celebrating Annie’s resilient and joyful spirit. Resources mentioned in this episode: Annie Louise Foundation – A resource hub for parents and caregivers Follow Courtney on Instagram Read Courtney's most recent blog post about how the Annie Louise Foundation helped with Central Texas Flood relief in Kerrville, TX

Tuberous Sclerosis Complex, epilepsy in children, and autism parenting—in this powerful episode, women’s health coach and mom of four, Erin Trier, shares her family’s eight-year journey to finally receiving a TSC diagnosis for her son, Brendan. She talks about the early seizures, navigating a rare genetic disorder, and managing the added challenges of autism and uncontrolled epilepsy. Erin opens up about the emotional and mental toll, the power of vulnerability, and the practical organization systems that help her family thrive—including her genius laundry strategy. She also shares why self-care, community connection, and support are essential for parents raising a medically complex child. You will not want to miss this episode. Resources Mentioned: Erin’s website: www.erintrier.com Instagram Podcast: Empowered in Health

Victoria Garcia—lovingly known as “Nurse Vic”—shares her powerful journey as a nurse and mom of two, including her daughter Julia, who was diagnosed with achondroplasia during pregnancy. In this heartfelt episode, Victoria opens up about the emotional and logistical challenges of navigating a rare diagnosis while working at the very hospital where she received the news. She talks about the strength she found in community, the importance of informed advocacy, and what it truly means to be in alignment with your purpose.

In this moving and hope-filled episode, mother-daughter duo Quinn Wyatt and Kirby Larson share the deeply personal story behind their middle grade novel, Gut Reaction. Diagnosed with Crohn’s disease as a teen after years of being dismissed, Quinn opens up about her experience living with a misunderstood chronic illness. Kirby, an acclaimed author, reveals what it took to revisit this painful chapter of their lives and co-write a book that helps kids feel seen. Together, they explore diagnosis delays, self-advocacy, parenting through illness, and how their storytelling became a form of healing and community connection. Resources Mentioned: Gut Reaction by Quinn Wyatt and Kirby Larson  Crohn’s & Colitis Foundation – https://www.crohnscolitisfoundation.org/ Learn more: https://gutreactionbook.com For Parents & Caregivers: Bring Child Life Home With You The SupportSpot app puts expert child life tools, coping strategies, and emotional support right in the palm of your hand—anytime you need it.

“What started as a terrifying diagnosis became a mission to help other families feel seen, supported, and brave.” – Kate, founder of Brave Bears Club In this reposted and newly updated episode, we revisit Kate’s emotional and empowering story as she shares her daughter Charlotte’s unexpected diagnosis of infantile spasms (IS) at 22 months old. What began as a terrifying medical journey transformed into an advocacy movement—Brave Bears Club—that now supports children with pediatric epilepsy around the world. Kate reflects on the early signs of IS, how her instincts as a mom led to a critical diagnosis, and what life has looked like navigating treatments, therapies, and the unknown. You'll also hear how she turned her experience into tangible tools of hope: an inclusive children’s book and EEG comfort bear to prepare kids for their medical experiences. Key Takeaways: ✅ Learn the early warning signs of infantile spasms ✅ Hear how Kate coped while pregnant with her second child ✅ Understand the emotional roll

 “The tears legitimately just turned to curiosity—and she wanted to play.” – Mary Jenner, BSN and Founder of the Butterfly Pig Meet Mary, a former pediatric oncology nurse turned full-time entrepreneur and founder of The Butterfly Pig. In this heartfelt episode, Mary opens up about how play transformed her bedside care, her daughter’s unexpected NICU stay due to HIE, and how she’s now helping families and clinicians reduce pediatric medical trauma through imaginative medical play tools. Listen in to discover how Mary's passion is revolutionizing how we empower kids and parents in healthcare.

“I was pumping in the NICU, feeling completely disconnected—and my husband looked at me and said, ‘Can you invite her in?’ That moment changed everything. A nurse handed me a swab, I gave my baby colostrum for the first time, and I thought, ‘I’m a mommy.’” – Tanisha NICU mom and advocate Tanisha shares her deeply moving journey through an unexpected fetal diagnosis, a 157-day NICU stay, and the powerful moments that helped her reconnect with motherhood. Diagnosed at 20 weeks with Lower Urinary Tract Obstruction (LUTO)—a rare, life-threatening condition—Tanisha’s son Jaleel faced impossible odds. From transferring care to Cincinnati Children’s Hospital, navigating in-utero surgery, to forming a life-saving care team that included her husband and child life specialists, Tanisha’s voice is a beacon of strength, love, and resilience.

In the wake of recent flooding in Central Texas, Katie Taylor—child life specialist and mom—pauses the regularly scheduled episode to speak directly to parents navigating uncertainty and grief. Whether you're facing a natural disaster, a scary news event, illness, or another tough moment, Katie offers a compassionate and practical framework to help guide difficult conversations with your child. Drawing from both her professional experience and personal moments with her own daughter, Katie walks you through a 5-step process to ensure these talks are grounded in safety, emotional connection, and honest, age-appropriate communication. Questions, media or collaborations? Reach out to us at hello@childlifeoncall.com What You’ll Learn in This Episode: Why regulating yourself is the first step to supporting your child How to assess what your child knows or believes about an event (and correct misconceptions) Strategies for explaining complex topics in clear, simple ways How to validate emotional reactions,

When Laura's daughter was diagnosed with leukemia, her world stopped. What followed was a powerful journey through fear, resilience, and fierce advocacy. In this episode, Laura DeKraker Lang-Ree—a lifelong educator and now author of The Cancer Parent’s Handbook—opens up about the most terrifying day of her life, how she transformed pain into purpose, and why parent-to-parent support is critical in the childhood cancer community. Her reflections are raw, heartfelt, and offer wisdom for every parent facing a medical diagnosis with their child. 

This episode is dedicated to Katie’s dear friend Joe, who recently passed away, leaving behind his wife and two young sons. Joe’s story reminds us to live in alignment with our purpose and to cherish the people we love. In this heartfelt episode of the Child Life On Call podcast, Katie Taylor speaks with B.R. Duray, an author, filmmaker, and storyteller whose debut children's book, The Mood Swing, is rooted in his experience of losing his father at the age of 10. With it being Father’s Day this past weekend, this conversation takes on even deeper meaning. B.R. shares how grief has shaped his creative life, the ways it resurfaces during important life moments, and how his book can help both children and adults find healing together. Whether you're a parent, a grieving adult, or a healthcare provider, this episode provides validation, comfort, and hope.  5 Key Takeaways from this Episode: ✅ Grief grants both pain and power B.R. explains how losing his dad gave him heightened emotional sensitivity and a creative

We’d like to extend our sincere thanks to our episode sponsor, reStickity®. Their innovative, mess-free reusable sticker sets allow families to personalize hospital spaces with familiar photos and comforting images, helping bring a sense of home to the hospital. To learn more, visit their website and use code CLOC10 for an exclusive discount available to our listeners. In this inspiring episode, we meet Sarah Michelle Boes—nurse practitioner, entrepreneur, and mom to Meadow, who was diagnosed in utero with Tetralogy of Fallot and multiple congenital heart defects. Sarah brings a powerful trifecta of perspectives: as a medical provider, mental health advocate, and dedicated heart mom. We cover: ✅ Meadow’s life-saving heart surgeries and long ICU stays ✅ How Sarah navigated new motherhood with OCD and anxiety ✅ The emotional toll of being both a medical provider and a parent ✅ Creating a connection through medical play to ease doctor visits ✅ How Sarah turned survival into purpose through national advocacy Whet

What happens when your world changes with a single phone call? In this powerful reposted episode, NICU dad and advocate Alex Zavala shares his emotional journey of fatherhood after his daughter was born at just 27 weeks. From the emergency C-section and NICU stay to the emotional toll of the "NICU dad shuffle," Alex opens up about the lesser-heard experience of dads navigating medical trauma, guilt, and resilience. As the host of the NICU Dad Podcast, Alex continues to amplify the voices of fathers facing similar experiences. This conversation is an essential listen for NICU families and healthcare professionals alike, reminding us of the often unseen emotional weight fathers carry and how vital their perspective is in family-centered care.   Key Takeaways from this week’s episode:   Premature birth can happen suddenly Fathers experience trauma too  The “NICU dad shuffle” is real  Life after the NICU is still challenging Community and storytelling are healing for fathers   Timestamps & Key Top

Learning to swallow pills can be a major milestone—and a big challenge—for many kids. In this episode, certified child life specialist Adina Levitan joins host Katie Taylor to break down the myths, fears, and best practices behind teaching children how to confidently swallow pills. From her clinical expertise to creative solutions like affirmations, games, and candy "pill" practice, Adina walks us through her unique approach to supporting kids and parents through this skill-building process. Whether you're a caregiver, clinician, or a parent trying to help your child at home, this episode is packed with insight, encouragement, and practical steps you can start today. In this episode, you’ll learn: ✅ Why pill swallowing is a learned skill that takes time and practice ✅ Tools and strategies to make learning fun and pressure-free ✅ How to create a pill-swallowing kit and step-by-step plan ✅ Creative tricks like affirmations, bingo, and candy practice ✅ Why early, low-stress practice is key—and how to know w

  “You make the best decision for yourself and your family—and you stick with it.”- Kim Pena What happens when you’re handed unexpected news at your child’s birth—and there’s no clear roadmap ahead? In this reposted episode, educator and mom Kim Pena shares her powerful journey as the parent of a child born with Microtia Atresia, a rare congenital condition affecting the ear. Kim was one of Katie’s very first guests on the Child Life On Call podcast, and her story is still a listener favorite to this day. In this repost, Katie kicks off the episode by giving us a quick update about Kim’s son.  From discovering her son’s diagnosis at birth to making emotional, high-stakes decisions about surgery and hearing aids, Kim walks us through her family’s deeply personal experience with compassion, clarity, and humor. In this episode, you'll learn: ✅ What Microtia Atresia is and how it affects children ✅ How Kim and her husband navigated hearing loss, reconstructive surgery, and insurance battles ✅ Why early interve

What if blending real food could transform your child’s tube feeding experience—and your entire family’s daily routine? In this inspiring episode, registered dietitian and new mom Hilarie shares how her career in pediatric nutrition led her to create Blended Tube Feeding, a platform and supportive community designed to help families explore real food options for children with feeding tubes. Hilarie and Katie have an insightful conversation about doing what works best for your family and how it is not an all-or-nothing approach when it comes to tube feeding. From clinical frustrations to practical breakthroughs, Hilarie’s story is packed with insight, empathy, and encouragement for families navigating complex feeding needs.   In this episode, you’ll learn: ✅ What blenderized tube feeding is—and how it helps with digestion, connection, and flexibility ✅ How Hilarie’s work in a neurodevelopment clinic inspired her mission ✅ Common fears and how to overcome them when shifting from formula to real food ✅ How

What would you do if both of your children were diagnosed with a life-threatening genetic disease—and there was no support system in place for parents like you? In this inspiring episode, Katie interviews Laura Bonnell, a former Detroit news reporter turned full-time advocate and nonprofit founder. After both of her daughters were diagnosed with cystic fibrosis (CF), Laura transformed her grief and determination into the Bonnell Foundation, providing real-time support to families across the U.S. who are navigating life with CF. In this powerful episode, we explore: ✅ How Laura pushed for her daughter’s diagnosis when doctors dismissed her instincts ✅ Why child life services were “among the best things” during hospitalizations ✅ What it’s like raising two daughters with cystic fibrosis in the same home ✅ The emotional toll of pretending “everything’s fine” as a medical parent ✅ How her foundation is providing financial relief, mentorship, and inspiration ✅ Why advocacy can take many forms—and how small action

What if every milestone your child was supposed to reach came with countless curve balls? For Alexis Kaplan, motherhood quickly turned into a journey of advocacy, strength, and unwavering love as she navigated her daughter Gabby’s complex and rare health conditions. In this moving episode, Alexis shares:  ✅ The moment her newborn was rushed to the NICU with a collapsed lung  ✅ How her daughter’s recurring infections led to a diagnosis of immunodeficiency and collagenous gastritis ✅ The emotional toll—and strength—of being the medical historian and advocate for a medically complex child ✅ How weekly infusions, therapy, and figure skating are helping her daughter thrive ✅ Her advice for parents facing rare, chronic, or undiagnosed conditions This is a must-listen for anyone caring for a child with complex medical needs, healthcare providers who want to better understand the family perspective, and parents looking for inspiration and connection. Timestamps & Key Topics ⏱️ [00:00] – Meet Alexis Kaplan Mother