Caregiver Stories Episodes

Katie, Certified Child Life Specialist interviews Effie Parks, mom to Ford who was born with a rare disease called CTNNB1. Effie is the host of the Once Upon a Gene podcast and in this episode she shares about her journey into parenthood and what it's like raising a child with special needs. She describes how: she learned to advocate for her son's needs self-care is non-negotiable she came to the realization that although parenting is different than she envisioned, her son has taught her more ...

Katie, Certified Child Life Specialist talks to Danielle, mom to Della a daughter with Eosinophilic Gastroenteritis. You may know Danielle formally as Danni Starr, the media personality, but she is also momma of two girls, one of which suffers from invisible, chronic illness. Danielle takes us through what the journey to a diagnosis was like (spoiler: it wasn't easy), how their entire family copes with the ups and downs and one surprising revelation: chronic illness isn't all bad. Listen to D...

Katie, Certified Child Life Specialist interviews Teresa, a mom of a teenage daughter with Spina Bifida. With no signs of abnormalities during her pregnancy, Teresa was shocked to learn that a fatty lump on her daughter's skin at the base of her spine would lead to a diagnosis of spina bifida occult with a tethered spinal cord. Teresa walks us through the shock of the diagnosis and the power that a one-on-one discussion with an empathetic doctor had on their ability to cope. Motivated by thei...

(This episode was developed in partnership with Aflac. I was compensated for this episode, but all opinions are entirely my own. #ad) In this episode, Katie Taylor, Certified Child Life Specialist talks about the importance of a community for caregivers. She interviews Nichole who shares what her son's experience with cancer has been like. Sara Stewart, Child Life Specialist at Lurie Children's Hospital discusses how she supports children and families during their cancer journey. Nichole refers ...

In this episode, Annie, Certified Child Life Specialist, talks to Eilieen. She is the amazing mom of a determined, fun loving, 4-year-old hero named Brady. Brady was diagnosed with Recessive Dystrophic Epidermolysis Bullosa (RDEB). While he inspires all who meets him, his favorite thing is just being a typical boy and being treated as such. After a move from Texas to Colorado to find the best care and environment for him, life shifted and their family became advocates in the RDEB community. Ei...

Katie talks to two Certified Child Life Specialists and military spouses, Savannah Self and Lisa McWhorter about ways to support military families. From long waits in military hospitals to helping children navigate the deployment of parents, child life specialists have an important role in helping families cope. A lack of consistency in providers due to moves across the country, and the world, is one of the biggest healthcare challenges military families face. Savannah and Lisa share tips and ...

Meg, is mom to four children one of whom is living with syndromic craniosynostosis. Her daughter, Avery, who is now six-years-old is proof that children are resilient and capable of so much. She discusses the exhaustion that comes from being the caregiver for a child who requires around the clock care. Meg attributes family (20+ cousins!) constantly surrounding her with love to be one of the biggest parts of their coping. "The first year is so tough, so buckle up. But once it's over, you'll be...

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Spit up, and even reflux, can be a common problem for infants, but what happens when it's more than that? In this episode, Amrita shares with Katie, Certified Child Life Specialist, about what happens when a child's reflux became severe and leads to a three-week hospitalization, a feeding tube, and ongoing support from developmental therapists. This is the reality of severe gastroesophogeal reflux disease. Listen to Amrita's story to hear how she has coped with this experience and how her son ...

In this episode, Katie interviews Lisa, mom to Riley. Sweet Riley is a spunky and sweet two-year-old living with Sickle Cell Anemia. Lisa talks about how they knew it would be a possibility while she was pregnant due to the trait being passed down, but they had hoped and prayed to avoid it like they did with their first born, a son who is now nine years old. She says that she can handle the frequent trips to the ER, but watching her daughter in pain is a feeling no mother should have to experi...

Meet Ashlyn, momma to her sweet and smiley boy, Myles. Myles was born with a rare disease that effects his limbs and other parts of his body. These symptoms are known as VACTERL association. As a self-proclaimed "planner," Ashlyn talks about the difficulties of having so many unknowns during her pregnancy and how she coped... and is coping... with their journey. She attributes her strong partnership with her husband and prayer as key components to getting through difficult times. If you'd like...

Meet Maura Senneff, mom to sweet Ryan. Ryan is a thriving 8-year-old boy who has Down syndrome. The amazing advocate by his side, his momma Maura, describes that "zooming out" and looking at things from wide lens helped them turn Ryan's health around. She talks about small changes and the "no limits" attitude their family lives by. If you'd like to follow along with Maura Senneff and her son, Ryan, you can follow their Instagram @Maurasenneff. Guest: Maura Senneff, Released: Aug 12, 2020 Whe...

Katie talks to Dominique, mom to Mila, who shares her birth story and NICU experience. Born at just 1lb 11ounces at 26 weeks old, Mila has made tremendous progress thanks to proactive parents, therapies and her momma's un conditional love. Dominique talks about the fear that comes with being an African American pregnant woman in the healthcare setting as well as the impact that sharing her story and community has had on her ability to cope with their journey. You can follow Dominique Pompey th...

In this episode, Katie, Certified Child Life Specialist, interviews Jessica, mom to two special needs children and one of which who is on the Autism spectrum. Jessica is also an adult clinical neuropsychologist and also hosts a podcast with her husband called, Thriving in the Midst of Chaos. Jessica discusses their journey to get a diagnosis, how they are coping with virtual therapy during covid19, and provides great resources and information about the Autism community. If you'd like to share ...

Elizabeth, mom to three girls, shares with us her experience of having a daughter with cancer. In just an hour and a half, her 9-year-old daughter went from a pediatricians office to a cancer ward. Elizabeth discusses her Elizabeth's "out of body" experience, how she was able to identify the "gifts" in each of her girls, and offers wisdom and compassion to others going through similar experiences. We also talk about how the global pandemic of Covid19 and subsequent quarantine has impacted their...

Katie, Certified Child Life Specialist, talks with Meg Casano, mother to Ella who has Idiopathic Thrombocytopenic Purpura (ITP) and also created the nonprofit Medi Teddy which is a stuffed animal cover for intravenous medications. Meg talks about the journey to discover her daughter's diagnosis and how an initial prediction that Ella's ITP would only last six months but has turned out to be a life-long chronic illness. She discusses the financial and emotional challenges that exist when you hav...

In this episode, Katie interviews Delanie, an American and child life student currently living in Beijing. She has been in quarantine since January 27. She shares what quarantine life has been like in China ... the center of the Covid19 pandemic. She shares advice from Chinese families who want Americans to know what the number one thing to have on hand at home is... and she talks about what they say life has been like in quarantine with children. She shares how government and culture have play...

This episode is not a cancer story. This is a story about a loving family, a precious child, and how to find miracles during the darkest parts of life. In this episode, Katie interviews Scott Kramer, father to Maddie. Maddie was diagnosed with atypical teratoid rhabdoid tumor (AT/RT) at just two and a half years old and sadly passed away after 8 months of treatment. However, Maddie's story is far from over. Scott and his wife are founders of Dancing While Cancering, a nonprofit that shares joy ...

In this episode Katie Taylor, Certified Child Life Specialist interviews Tara Geraghty, President and Founder of Making Cancer Fun. Tara is momma to Emily who was diagnosed with Stage 4 Neuroblastoma at just three years old. Tara used positivity and FUN to help herself and her daughter cope with their cancer journey. Tara is an author, webinar host, TedX Talk speaker, and just an all around inspiring person. Follow Making Cancer Fun on Facebook, Twitter and Instagram and follow Tara on Facebook...

This episode of the Child Life On Call podcast is different that what you're used to hearing, but I fell in LOVE with a book called Tiger Livy and I knew I had to interview the authors. Tiger Livy is the story of a brave six-year-old who inspires empathy, patience, and grit in young readers. It was created for children living with chronic illness but is a great read for any child, even if they're not sick. Co-Authors, Betsy Miller, who experienced her own limitations as a child and Erin Garcia...

This is Lauren's Story - A daughter with congenital heart defects on the Child Life On Call Podcast, hosted by Katie Taylor, Certified Child Life Specialist. Little Everly is just over two years and has more fight and life inside of her than most of us could ever dream of. And she's not the only one… prepare to be amazed by big brother too. Their mom, Lauren, shares with us her optimistic perspective even when they've had had their share of complications and setbacks. Lauren mentions resources...

This episode features Alexandra Ortega, mom of three. She shares the stories of her two son's Theo and Noah. First, we talk about her second-born, Noah, who suffered a traumatic brain injury during his birth at 35 weeks. Next, we talk about her third-born, Noah, who was born at 28 weeks. Alex talks about their NICU experiences, the ups and downs of having children with special needs, and how she copes herself. Alex's words in this episode will resonate with anyone who has a child or loved one wh...

In this episode you will hear from Gillian, cohost of the For Grits and Giggles podcast. Gillian describe her personal journey that includes a cancer diagnosis for her infant daughter and life altering accident that happened a year after she finished chemotherapy. She shares her own personal struggles in coping and how she sought medical help, and she'll describe how meeting another mom whose life paralleled hers turned into a lifelong friendship and a special bond that will stay with her foreve...

Meredith, mom to now 8-year-old Lola, shares her experience with her daughter who was diagnosed with Bosch-Boonstra-Schaaf optic atrophy syndrome (BBSOAS) shortly after she was three-years-old. However, their story didn't begin there. As an adventure, Meredith talks about how she and her husband moved to Costa Rica from Indiana after they were married. Lola was born there and shortly after birth, her mom began having questions about her health and development. From infantile spasms to possible ...