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  • A Father's Journey Through Loss, Healing, and the Birth of a Rainbow Baby: Jeff's Story

    A Father's Journey Through Loss, Healing, and the Birth of a Rainbow Baby: Jeff's Story
    2025/12/10
    In this profoundly moving and honest conversation, we sit down with Jeff Loving, a NICU dad, husband, and now an author, who shares the intimate and often unspoken grief experienced by fathers after pregnancy loss. Jeff walks us through the heartbreaking loss of his two sons, Davian and Jadon, the struggle to find empathy and appropriate medical care, and how these experiences ultimately led him and his wife, Cassie, to become fierce advocates for their future family. This episode is a raw look at marriage under immense stress, the importance of empathetic medical staff, and the redemptive joy of welcoming their "double rainbow" daughter, Isla Grace. Jeff also discusses his mission to help other men through their grief by writing his book, Holding Onto the Light. Key Discussion Points & Timestamps Time Topic Key Takeaway 00:06 Meet Jeff Loving: Husband, NICU Dad, and Author Jeff introduces his family, including his dog, Sage, his wife, Cassie, and their NICU "double rainbow" baby girl, Isla Grace, reflecting on five years of marriage and three pregnancies. 01:08 The Loss of Davian (First Pregnancy) Jeff describes the initial shock and excitement of their first pregnancy, the sudden onset of symptoms at 19 weeks, and the devastating choice they faced in the hospital due to an infection: lose the baby, or risk losing both the baby and his wife. 04:55 The Cruel Disconnect of Grief Jeff recounts the soul-crushing moment of holding his son, Davian, as his heartbeat stopped. He shares the struggle of navigating intense grief while the world—and Thanksgiving—kept moving around them. 07:58 Finding Support: The Power of Presence The discussion turns to how his family supported them by simply being present, rather than offering platitudes like "it's God's plan." The importance of showing up for grieving parents is highlighted. 11:21 Empathetic vs. Detached Care Jeff praises the nurses who were a "calming presence in the chaos" and later attended Davian's service. Conversely, he shares a painful anecdote about a male doctor's detached and jovial demeanor, asking if he wanted to cut the cord after the loss. 15:51 What Compassion Looks Like in Care Jeff shares what he wished the doctor had said: "I know this is very hard... just know that my heart breaks for you, and I'm so sorry that you guys are going through this." This is a vital lesson for medical professionals. 16:55 Marriage Under Stress After moving to North Carolina for a fresh start, Jeff discusses how the loss put their marriage under extreme stress—it would either break them or bond them deeper. They emerged stronger. 23:13 The Loss of Jadon (The Second Pregnancy) The traumatic situation repeats almost day-for-day with their second son, Jadon. Jeff details the medical system's failure to provide a cerclage procedure, despite repeated requests, and the resulting emergency. 26:45 The Audacity of Poor Communication Jeff recounts being livid when the doctor who denied them the preventive cerclage entered the room without him present to tell his wife they were losing their baby, and then left without speaking to Jeff. 34:20 The Blessing of Angel the Bereavement Coordinator Jeff shares the incredible support they received from their bereavement coordinator, Angel, who handled every detail from handprints to selecting clothes, even providing a moment of much-needed humor when she accidentally gave Jadon a hilarious nickname. 36:02 Remembrance Toys: Dino Dave and Jucletus The significance of tangible remembrance items, like a weighted dinosaur (Dino Dave) and a heartbeat bear (Jucletus), that allow Isla to connect with her "big brothers." 39:18 "This is Our Double Rainbow Child" Jeff discusses the difficulty of answering "Is this your first?" as a parent of loss, and how he now confidently speaks of Isla as their "double rainbow child." 42:03 A Resource for Fathers of Loss Jeff explains his motivation for writing his book, Holding Onto the Light: A Father's Journey Through Loss and Healing. He notes the lack of resources for grieving men and how he encapsulated real stories into a fictional narrative to help them feel seen and heard. 46:05 The Defining Moment The most powerful feedback: a man who hadn't read a book in a decade finally read Jeff's book after losing his son. 48:52 Where to Find the Book and Connect Jeff shares his book title, where to buy it, and the dedicated email address to build a community of grieving fathers. Action Items & Connect with Jeff Read Jeff's Book: Title: Holding Onto the Light: A Father's Journey Through Loss and Healing Author: J. S. Loving Available: On Amazon (print and Kindle Unlimited). Connect & Share Your Story: Fathers of Loss Email: holdingontothelightbook@gmail.com (Jeff's goal is to connect with other fathers and collect stories for a future project). Instagram: @L-O-V-I-J-E-F (L-O-V-I-J-E-F) When parents feel empowered, everyone wins – kids thrive and the care team excels! Links ...
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    54 分
  • Understanding Homocystinuria (HCU): How one Mother Uncovered her Son's Diagnosis

    Understanding Homocystinuria (HCU): How one Mother Uncovered her Son's Diagnosis
    2025/12/03
    Melanie, mom to 12-year-old Masen, shares the unexpected path to her son's diagnosis with Homocystinuria (HCU) after a routine eye exam revealed something "off." What followed was months of uncertainty, a rare diagnosis few providers had even heard of, a crash course in low-protein diets and metabolic formulas, and two back-to-back eye surgeries to prevent further damage. With gentleness, honesty, and deep advocacy, Melanie describes how they adjusted as a family, how Masen built resilience, and how finding community changed everything. A story of early detection, parent intuition, and the power of connection. Why this episode matters Rare disease reality: What it feels like to navigate a diagnosis most clinicians have never seen Caregiver intuition: How a parent's sense that "something isn't right" can spark life-saving action Practical communication: Age-appropriate ways to explain health changes, procedures & dietary needs Health equity & systems gaps: When newborn screening misses what should have been caught Hope forward: The resilience of kids—and the strength families build together What You'll Learn Early signs Masen showed (or didn't show) before diagnosis How a routine eye exam led to life-changing discoveries What HCU is, and why newborn screening only catches ~50% of cases How metabolic diets work—and why the formula is so hard for kids Talking to kids about scary changes in simple, honest language Navigating back-to-back eye surgeries How parents balance their own needs while supporting their child Building resilience without expecting perfection The power of community: conferences, meetups, Facebook groups Advocating for improved newborn screening for future families Timestamps 00:00 Meet Melanie & Masen: family intro, life in Vancouver 01:23 Sports, hockey, and life surrounded by nature 01:56 Routine eye exam → the moment everything changed 03:38 The optometrist's concerns & the start of uncertainty 04:01 Google panic, calling providers, needing answers 04:55 Keeping fears private during COVID 07:38 Mother's Day call: the rare diagnosis finally revealed 07:47 What HCU is and why newborn screening misses it 10:45 Treatment basics: low protein & metabolic formula 11:19 Explaining diagnosis to an eight-year-old 13:14 Parenting through fear while staying regulated 14:52 "Eat the prawns in the pantry"—navigating food changes 17:29 Building resilience while validating hard feelings 18:31 Finding community online & through HCU conferences 20:41 Masen meets other kids with HCU 22:33 Advocacy: improving newborn screening across Canada 24:28 Social media vs. real-life progress 24:58 Masen's eye surgeries & long-term vision care 27:46 What parents can request if concerned about HCU 30:22 Trusting your care team & staying curious 30:51 Who Masen is beyond a diagnosis 34:22 Where to learn more about HCU Melanie shares that… "My heart was racing. I knew something was off." "Most doctors have never even heard of HCU." "The formula tastes terrible, but it keeps him healthy." "You can be proud of your child's resilience and still wish they didn't need it." "This should have been caught at birth—we want to change that for future kids." Resources & Links HCU & Metabolic Disorder Communities HCU Network America (Instagram: @hcunetwork_america) CANPKU+ (Instagram: @canadian.pku) SupportSpot App (by Child Life On Call) Procedure guides, coping plans, journals, and parent resources to help families feel prepared and advocate with confidence. 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 The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed ...
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    41 分
  • Autism, Advocacy and the Power of a Medical ID: Tara's Story

    Autism, Advocacy and the Power of a Medical ID: Tara's Story
    2025/11/19
    Tara Cohen opens up about her son Will's autism diagnosis and how it transformed her family and career. From navigating meltdowns to discovering AAC as a communication lifeline, Tara shares her honest reflections on parenting, resilience, and hope. What began as a search for a medical ID bracelet led to a career at Lauren's Hope—where she now helps other families feel safe and supported. This heartfelt episode reminds caregivers that advocacy grows from love and that even small acts of compassion can make a life-changing difference. Timestamps 00:00 – Introduction 03:10 – Early diagnosis and emotions 07:45 – Advocacy and ESE Pre-K 12:30 – Discovering Lauren's Hope 18:40 – Communication with AAC 25:15 – Managing epilepsy 31:00 – Finding silver linings 37:00 – Advice for caregivers Resources Mentioned Lauren's Hope Medical ID Jewelry ESE Pre-K (Florida early intervention) Temple Grandin (2010 film) Children's Mercy Kansas City (neurology and epilepsy care) Child Life On Call Resources Level up your parent toolkit with child life–expert guidance: 👉 Get SupportSpot on the App Store Want to hear insights from our host, Katie Taylor, Certified Child Life Specialist? 👉Subscribe to Katie's Substack Interested in being a guest or learning more about the podcast? Email us at podcast@childlifeoncall.com When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot WebsiteDownload SupportSpot iOS or Android 85% of users report high satisfaction, appreciating the SupportSpot app's comprehensive resources and user-friendly interface.92% of parent users say the SupportSpot app's helped them understand medical procedures and treatment better.80% of parents believe the SupportSpot app's has contributed to better health outcomes for their child.73% of parent users believe the SupportSpot app's 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 The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided. Facebook.com/childlifeoncall linkedin.com/in/kfdonovan
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    58 分
  • When Your Baby is Diagnosed with Type 1 Diabetes: Marlee's Story

    When Your Baby is Diagnosed with Type 1 Diabetes: Marlee's Story
    2025/11/12

    "My baby went from fussy to lifeless in hours—by the time we reached the PICU, they said he might have had six hours to live."


    In this episode, TikTok Influencer and Medical Mom Marlee Brandon, a pediatric speech-language pathologist turned full-time mom, shares the whirlwind diagnosis of her 12-month-old son Bain with Type 1 diabetes and severe DKA, the traumatic hospital stay, and the everyday advocacy that followed. Raw, practical, and deeply hopeful.

    Why this episode matters

    • Emotional clarity: what a Type 1 diagnosis really feels like in infancy

    • Practical advocacy: scripts, choices, and language that help toddlers cope

    • System gaps: when even major hospitals say "we've never seen this in a baby"

    • Hope forward: raising a confident kid who knows why care matters

    What You'll Learn

    • Early signs & ER visit: how "ear infection" symptoms masked T1D in a baby

    • DKA in plain language: what "acidic blood" means and how PICU treats it

    • The learning cliff: carb ratios, breastfeeding while dosing insulin, and why it's OK not to "get it" on day one

    • Toddler coping: give choices, narrate care, build independence

    • Rebuilding trust after mistakes: when training/tools aren't perfect

    • Finding your people: groups, podcasts, and creators who answer "what now?"

    Timestamps

    • 00:00 Meet Marlee (pediatric SLP → motherhood)

    • 01:40 Why speech therapy & pediatrics

    • 03:55 Bain turns one → sudden "ear infection" → nonstop vomiting

    • 06:30 Small-town ER: "He has diabetes" (dismantling stereotypes)

    • 08:35 Life-flight & PICU: severe DKA, hourly sticks, no food for 48 hrs

    • 10:20 Turning the corner: energy returns; the six-hour window

    • 11:22 "I don't understand this"—carb ratios, nursing, overwhelm

    • 13:05 "We've never seen this in a baby" at a major children's hospital

    • 15:23 Tears → handing tasks to partner → first solo shot

    • 17:20 The Chick-fil-A moment: necessity builds confidence

    • 18:44 Finding community: Facebook groups, YouTube, TikTok

    • 19:55 Narrating care for toddlers—SLP tools that build trust & language

    • 21:19 Offering choices: stickers, shot sites, pushing the button

    • 22:53 Caregiver reality: self-care with very young T1D

    • 24:32 Why daycare felt unsafe: syringe mix-ups & trust

    • 25:54 Joy check: rocks, crafts, and a kid excited by everything

    • 27:56 Best resources for newly diagnosed families

    • 29:52 "Diabetes doesn't define your life."

    Marlee Shares that...

    • "Type 1 isn't about weight or diet—my baby was still nursing."

    • "They told my husband he probably had six hours to live."

    • "I thought I needed nursing school to understand our endo."

    • "I won't chase him with a shot. I explain why—insulin keeps you safe."

    • "You can be anything and do anything…and have diabetes."

    Resources & Links

    • Support communities

      • Diapers & Diabetes (Facebook group for infants/toddlers with T1D)

      • Juicebox Podcast

    • Related Child Life On Call resources

      • Explaining shots, blood draws and vaccines to kids

    • SupportSpot App (by Child Life On Call)

      • Procedure guides, coping plans, journals, and parent resources to feel prepared and advocate with confidence

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    34 分
  • Surgery for Pediatric Drug-Resistant Epilepsy and Infantile Spasms (278) - Audrey's Story

    Surgery for Pediatric Drug-Resistant Epilepsy and Infantile Spasms (278) - Audrey's Story
    2025/11/05
    Join us for an incredibly candid and informative conversation with Audrey Vernick, a passionate advocate and the Director of Patient and Family Advocacy for the Pediatric Epilepsy Surgery Alliance. Audrey shares the powerful 21-year journey of her son, Bennett, who suffered a stroke in utero and was later diagnosed with the catastrophic epilepsy known as Infantile Spasms. Audrey recounts the emotional process from the difficult labor and early concerns dismissed as normal reflexes, to the terrifying moment she saw his MRI and realized half of his brain was black due to a massive stroke. This episode is an essential listen for any parent navigating a serious pediatric diagnosis, especially those dealing with seizures. Audrey shares her family's ultimate decision to pursue a hemispherectomy after two years of failed medications, and the immediate, miraculous developmental explosion in her son's language and physical abilities post-surgery. Key Takeaways and Actionable Advice Trust Your Parental Instinct: If you think something is wrong with your child's movements, something probably is. Demand a Specialist: If you suspect Infantile Spasms, go to the ER and demand to speak to a neurologist or epileptologist. Request video EEG monitoring. Video & Log Everything: Record videos of suspicious movements and log details (time, duration, what you observed) to help clinicians with diagnosis and treatment planning. The Difference Between a Consult and Surgery: A surgical consult is not a surgery. Referring for a pre-surgical workup opens up a new toolbox of solutions and gives you access to a world-renowned team of specialists for a more detailed look at your child's case. Drug-Resistant Epilepsy (DRE): Epilepsy is considered DRE if a child has uncontrolled seizures after appropriately failing two seizure medications. This increases the risk of SUDEP (Sudden Unexplained Death due to Epilepsy). Decision-Making: Understanding your partner's decision-making style is crucial when navigating complex medical choices. Guest Information & Resources Guest: Audrey Vernick, Director of Patient and Family Advocacy at the Pediatric Epilepsy Surgery Alliance. Organization: Pediatric Epilepsy Surgery Alliance Website: epilepsysurgeryalliance.org. Resources: Offers a Parent Support Navigator Program (trained peers), financial aid for travel to a Level Four epilepsy center for pre-surgical workups, webinars, and more. Infantile Spasms Resource: Audrey also mentions the Infantile Spasms Action Network for resources on recognizing and acting on infantile spasms. Time Stamp Description Key Information 00:00:43 Critical Advice: Surgery Consult vs. Surgery Audrey shares the core message that a surgery consult is different than a surgery, and there is no harm in seeking a consultation for any diagnosis. 00:01:54 Bennett's Diagnosis and Surgery Audrey introduces her son, Bennett (21), who had a stroke in utero, infantile spasms, and ultimately a hemispherectomy. 00:04:50 The Early Months: Colic vs. Seizures Audrey describes the first five months, where unusual movements and fussiness were initially dismissed as normal reflexes and colic by her pediatrician. 00:12:08 Emergency EEG & Stroke Discovery The night she called a new neurologist, they were admitted for a 48-hour video EEG monitoring. The next day, an MRI revealed a massive stroke in the right hemisphere. 00:14:50 Infantile Spasms: Recognize the Signs Audrey, as a leader of the PESA, stresses that Infantile Spasms is a medical emergency. She describes the signs: head drop/nod, flexing, and subtle movements that happen in clusters. 00:17:10 Advocacy: How to Get Help Advice for parents: Take videos, take logs, and at the ER, demand to see a neurologist or epileptologist. 00:22:15 The Surgical Seed is Planted Bennett's first neurologist mentioned a hemispherectomy when he was only five months old, which her husband immediately dismissed, but planted a "seed" for future research. 00:24:09 Choosing Surgery and the "Elmo Song" Miracle The family begged for surgery and two days later Bennett had his hemispherectomy. Two weeks later on the plane home, Bennett, whose speech was suppressed, sang the entire Elmo song, signaling the impact the seizures had been having. 00:30:52 Defining Drug-Resistant Epilepsy (DRE) DRE is when a child has seizures after failing two appropriately dosed medications. DRE is harmful to development and carries the highest risk of SUDEP (Sudden Unexplained Death due to Epilepsy). 00:42:55 Final Message: Trust Yourself Audrey's final, powerful advice to parents: You are the expert in your own child; trust yourself and use that expertise as a tool on your journey. Support the Host & Show If you found value in this conversation, please check out host Katie Taylor's work and community resources: Join Katie Taylor's Substack for in-depth insights and articles: Join here Get the SupportSpot App—a helpful tool to support your child through their ...
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    46 分
  • A Speech Language Pathologist's Tips to Helping Your Child Thrive (277)-Luba's Story

    A Speech Language Pathologist's Tips to Helping Your Child Thrive (277)-Luba's Story
    2025/10/29
    "The excitement that the kids feel when they are seeing you... and they know today's session with Ms. Luba and they can't wait to see you." - Luba Kaplan When a child enters the medical system, parents often meet many specialists beyond doctors and nurses, including Speech-Language Pathologists (SLP). These professionals are vital members of the healthcare team, doing more than just helping with speech. SLPs, as Luba Kaplan explains, also explains how they look at every area of the child's development to ensure children are being fully supported. In this episode, we introduce Luba Kaplan, a passionate SLP, Oral Myofunction Therapist, and mother of three who is the visionary behind Kidology. Celebrating 10 years in private practice, Luba has made it her mission to bridge gaps in access to therapy. She even created the Therapy Bus—a half-size school bus that travels to families who can't leave home or have transportation issues. About Our Guest: Luba Kaplan, SLP Luba Kaplan is a Speech-Language Pathologist and Oral Myofunction Therapist. As the founder and owner of Kidology, she has built a practice that offers a multidisciplinary, team approach to therapy, including Speech, Occupational, Physical, and Behavioral services. Luba is driven by a deep passion for helping families achieve change and is dedicated to cancer research in honor of her mother, Angela, who worked in oncology research for 25 years. Luba on Social Media: TikTok, Instagram, Facebook: @KidologyInc (KIDOLOGYINC) YouTube Channel: Find Kidology's content on YouTube Key SLP Insights for Medical Parents Luba shares crucial advice for working effectively with a Speech-Language Pathologist: Build Strong Rapport: Share everything that is going on in your child's life, even seemingly small struggles like a supermarket meltdown. The more the provider knows, the more they can help. Look for a Global Approach: Seek a provider who utilizes a multidisciplinary, team approach and is willing to screen for or refer to other needed services (OT, PT, behavioral services). Early Intervention is Key: Don't wait or assume your child will simply "grow out of it.". Addressing issues sooner, not later, can put your child ahead. Ensure Family Alignment: Everyone in the child's life (parents, grandparents, etc.) must be on the same page with the therapy goals to ensure the proper foundation for progress. Otherwise, therapy won't work. Trust the Independent Session: While parental presence is key in a hospital setting, giving your child space to learn independently in a non-threatening environment allows them to develop their own voice and thrive with the therapist. Stay Committed: Stick with the therapy program even when you think your child is "okay". Commitment is essential for your child to be better off post-program. Episode Timeline Highlights 00:00: Introduction to the role of a Speech-Language Pathologist. 01:00: Introducing Luba Kaplan, the visionary behind Kidology and the innovative Therapy Bus. 02:30: Luba's passion for change and her personal connection to cancer research. 06:00: Tips for parents on finding an impactful provider and the necessity of sharing full history. 09:30: Navigating the system and the need for a team approach in therapy. 11:00: Strategies for carryover at home: portals, homework, and getting the whole family on the same page. 15:45: The difference between presence in an acute trauma setting (hospital) vs. a non-threatening environment (therapy clinic). 19:30: The growth of Kidology: from one suburban office to two central clinics with play gyms. 22:00: Final takeaways: the importance of commitment and not delaying intervention. Support Our Host & Show Child life specialists are experts who help families navigate the overwhelming and confusing world of healthcare. Now, you can access these valuable tools and resources outside of the hospital setting through the SupportSpot App. Parents, get empowered! The SupportSpot App provides tools to: Understand and explain medical procedures to your child. Help your child feel less anxious. Feel informed and confident in your child's healthcare journey Join Katie Taylor's Substack for in-depth insights and articles: Join here Child Life Specialists- join the circle. There is a seat here for you to recieve support, professional development, and access to clinical supervision. 🌟 Special Thank You for Our Listeners! 🎉 We're giving you free access to our most popular pediatric masterclasses — How to Prepare, Support, and Respond to Your Child During Shots, Blood Draws, and Vaccines and How to Use Comfort Positioning in Pediatrics — a $250 value, completely free! All you have to do is leave a written review of the Child Life On Call podcast on Apple Podcasts or Spotify, then email a screenshot of your review to podcast@childlifeoncall.com. Once we receive it, you'll get instant access to both courses — no strings attached. It's our way of ...
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    29 分
  • From Early Diagnosis to the Power of Community and Humor in Type 1 Diabetes (276)- Stacey's Story

    From Early Diagnosis to the Power of Community and Humor in Type 1 Diabetes (276)- Stacey's Story
    2025/10/22

    When Stacey's toddler was diagnosed with Type 1 diabetes, her family's world turned upside down. In this episode, she shares the early warning signs, the struggle of those first two weeks of injections, and how humor and community turned fear into resilience. Parents will gain hope, advocacy tips, and coping strategies for managing a chronic illness diagnosis.

    What You'll Hear

    • How Stacey recognized the 4 Ts of diabetes: Thirsty, Tired, Thinner, Toilet

    • The reality of hospitalization, finger sticks, and injections with a toddler

    • Coping strategies: medical play, humor, and routines that work

    • The power of community and rejecting "perfect parenting"

    • Building advocacy through Diabetes Connections and The World's Worst Diabetes Mom

    About Stacey

    Stacey Simms is an award-winning broadcaster, speaker, and author of The World's Worst Diabetes Mom. Since 2015, she has hosted Diabetes Connections, offering real stories and resources for the Type 1 community.

    🔗 Diabetes Connections
    🔗 Instagram @staceysimms

    Key Takeaways

    • Advocate for more than a finger stick when symptoms appear

    • Medical play & humor ease children's anxiety about procedures

    • There's no "perfect parent"—safe and happy is enough

    • Community matters, but it's okay to choose your people wisely

    Timestamps

    00:00 – Introduction & Stacey's background
    02:00 – Early signs of Type 1 diabetes (the 4 Ts)
    06:00 – Hospital stay and first injections
    10:00 – The hardest two weeks: shots, tears, and routine
    15:00 – Teaching kids about diabetes as they grow
    18:00 – Humor, medical play, and coping strategies
    22:00 – Building Diabetes Connections & Moms' Night Out
    25:00 – Lessons Stacey learned about herself
    27:00 – The myth of perfect parenting

    Support the Host & Show

    If you found value in this conversation, please check out host Katie Taylor's work and community resources:

    • Join Katie Taylor's Substack for in-depth insights and articles: Join here

    • Get the SupportSpot App—a helpful tool to support your child through their healthcare journey: Check it out

    • Listen & Subscribe!

    🌟 Special Thank You for Our Listeners! 🎉

    We're giving you free access to our most popular pediatric masterclasses — How to Prepare, Support, and Respond to Your Child During Shots, Blood Draws, and Vaccines and How to Use Comfort Positioning in Pediatrics — a $250 value, completely free! All you have to do is leave a written review of the Child Life On Call podcast on Apple Podcasts or Spotify, then email a screenshot of your review to podcast@childlifeoncall.com. Once we receive it, you'll get instant access to both courses — no strings attached. It's our way of saying thank you for listening and helping more parents discover our show. 💛

    The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child is experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.
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    36 分
  • NICU, Down syndrome and Infant Loss: A Grief Story and Children's Book( 275) - Teejay + Jon's Story

    NICU, Down syndrome and Infant Loss: A Grief Story and Children's Book( 275) - Teejay + Jon's Story
    2025/10/15
    In this incredibly personal and moving episode, we sit down with Teejay and Jon, the authors of the gentle children's book Clemence, to share the full, raw story of their daughter, Nadiya. Their journey began with an unexpected connection—a transatlantic online romance between Teejay in Australia and Jon in Canada—that quickly turned into a marriage grounded in a shared life and purpose. With Teejay's extensive background in early childhood development and their experience fostering a young man with Down syndrome, they felt prepared when Nadiya was diagnosed with Trisomy 21 (Down syndrome) early in the pregnancy. However, Nadiya's complications were severe: a complete AVSD (Atrioventricular Septal Defect), a heart condition that made survival a constant battle. Teejay and Jon open up about the grueling reality of Nadiya's three-month, extended NICU stay. They speak candidly about the sheer exhaustion, the mental toll of the incessant alarms and machine noise, and the profound isolation of making life-and-death decisions under unimaginable pressure. We explore the difficult but necessary truth of grieving alongside a partner who processes loss in a completely different way. Jon, an extrovert, sought normalcy and company, while Teejay, an introvert, needed space and quiet isolation. They explain how establishing mutual respect and seeking professional counseling were the key foundations that saved their marriage during this seismic time. Finally, they share the powerful mission behind their book, Clemence. Written to honor Nadiya's memory, it provides a crucial tool for families, helping them talk to children about baby sibling loss. They reveal plans for a sequel to address the unique grief of the "neglected mourners"—the subsequent children born after a loss who never met their older sibling. This conversation is an essential listen for anyone in the NICU community, processing loss, or seeking resources for pediatric grief support. Note: We recognize this episode addresses Infant and Pregnancy Loss Awareness. We stand with all families who have experienced loss and hope this conversation brings comfort and community. Episode Highlights & Timestamps Time Topic 00:05:48 Nadiya's Diagnosis: Trisomy 21 and the severe complete AVSD Heart Condition. 00:07:07 The NICU Reality: Coping with the three-month extended stay and constant medical crisis. 00:11:05 Profound Kindness: The stranger's DoorDash order that helped them survive the crisis. 00:13:28 Nadiya's Spirit: Her curiosity, determination, and "badass" personality that charmed the nurses. 00:22:10 Grief in Marriage: Navigating different coping styles (Introvert vs. Extrovert) to stay together. 00:24:25 What Helps? The power of presence and what to say (and what NOT to say) to grieving parents. 00:30:46 A Continuing Legacy: Writing the sequel for Clemence to support subsequent siblings. Connect & Resources Connect with Authors Teejay & Jon: You can find their children's grief book, Clemence, available on [Amazon, Barnes & Noble, Indigo (Canada), and all major book retailers]. Support & Grief Resources: For additional support and resources mentioned in the episode, please visit: Canuck Place Children's Hospice Kids Grief Support (Jessica Correnti) Support the Host & Show If you found value in this conversation, please check out host Katie Taylor's work and community resources: Join Katie Taylor's Substack for in-depth insights and articles: Join here Find community and support with the SupportSpot App (a helpful resource for organizing and receiving support during difficult times): Check it out Listen & Subscribe! 🌟 Special Thank You for Our Listeners! 🎉 We're giving you free access to our most popular pediatric masterclasses — How to Prepare, Support, and Respond to Your Child During Shots, Blood Draws, and Vaccines and How to Use Comfort Positioning in Pediatrics — a $250 value, completely free! All you have to do is leave a written review of the Child Life On Call podcast on Apple Podcasts or Spotify, then email a screenshot of your review to podcast@childlifeoncall.com. Once we receive it, you'll get instant access to both courses — no strings attached. It's our way of saying thank you for listening and helping more parents discover our show. 💛 Disclaimer: The content of this podcast is for informational purposes only. The host and guests are not licensed therapists or medical doctors. Always consult with your child's qualified medical professional for advice specific to your family's situation.
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    40 分