Caregiver Stories Episodes

Today I get to introduce you to Moira, the host of Surviving the Waiting Room - a podcast based on her experiences from learning how to be an advocate for her teenage children as they started to figure out their health issues. Although they have diagnoses now, there are no exact tests for Celiac Disease or migraines, so Moira has gotten really good at finding people to help give her information. She has a lot of value to share about getting answers for your kids as well as about relating to teen...

The Dad's Perspective: A Son with a Rare Genetic Disease So there is this rock star in the podcast world, and her name is Effie Parks. She hosts a podcast called Once Upon a Gene, inspired by her son who has a rare genetic disease. Effie really focuses on the idea that disability is diversity, and that is an idea I try to put into practice professionally as well as personally. Today, we are going to hear from Effie's husband. If you haven't yet, check out Effie's story. Then head back here to l...

Today I'm introducing you to Jenny Hull, a single mom to Josie who just turned 20 years old. Jenny is also the CEO and founder of a nonprofit organization called Once Upon a Room. They are changing the game for kids in hospitals, and we'll get into all the amazing things they do toward the end of our conversation. Jenny is one of the most comforting and compassionate people I've ever had the pleasure of talking with, and her family story is unlike any other - from head-conjoined twins given less...

It's an incredibly rare experience to sit next to someone else who "gets" what you're going through… exactly. That's what support groups are for, right? Well, today you're getting an inside look into what young adults who have experienced childhood cancer are saying in their support group. These amazing individuals were treated at Hershey Medical Center and now share their support group on a live forum through their Life On Pause podcast. Go listen and share ALL of their episodes. We can learn s...

I connected with one of today's guests, Brady, through our shared alma mater, Penn State University. He has dealt with cancer not once, but twice, and he agreed to come on the podcast with his mother, Lisa. I'm so honored to have both of them on the show to share their experiences, and to continue to spread awareness about this terrible disease during Childhood Cancer Awareness Month. In this episode, we talk about… [2:35] Lisa's and Brady's family [3:30] Brady's cancer diagnosis [9:05] Feeling ...

I'm so excited to have my friend Starlyn on the show today! She and her husband have struggled with infertility for years, and she is here to share the miraculous story about having one embryo and ending up with four babies. Today we will hear all about what it's like to be pregnant with quadruplets, to be separated from them (and her older daughter) in antepartum, and to be unable to visit them in the NICU due to a natural disaster (the Texas snowstorm in March 2021, plus the COVID-19 pandemic)...

September is Childhood Cancer Awareness Month. Over the last four-and-a-half years, I have had the opportunity and honor to interview many parents who are a part of a club that they didn't ask to be in. There is a common bond when you can look at another parent and say you have been through exactly what they are going through. I wanted to go through some of the amazing stories we have been able to share, and give you some of the clips and audio tips that we have gotten from so many families on t...

My guest this week is Taraneh, sharing her story about having a son with cleft palate. In this episode, we talk about… [2:24] Taraneh's background and her family [3:54] Taraneh's pregnancy and birth experience with her son [5:23] Cleft palate and Pierre Robin Sequence diagnoses [12:35] Flexibility with feeding a baby with a cleft palate [15:40] Leaving the hospital and transferring care to a clinic [20:44] Taraneh's son's surgery [29:28] Surprising or unexpected moments from going through this e...

This episode is sponsored by SmileMakers. Use code ONCALL20 for 20% off your order of smile making stickers, toys, patient supplies, and more! Meet Bonnie, her husband and her three adult children. Bonnie calls herself "the replacement kid" after her parents lost their son to Type 1 Diabetes. Because of their history, Bonnie was hyper aware of the signs and symptoms and ended up diagnosing her own son at 5 years old with a urine test strip on the bathroom floor of their own home. Have you heard...

"For me, it's balancing supporting him in full honor of his disabilities and making sure I am advocating for him AND relating to him as fully capable and strong." Katie, Certified Child Life Specialist talks with mom of four, life coach and podcast host, Kara Ryska. Kara's son was diagnosed with a brain tumor shortly after he turned 18 months old. We talk about what it's like to hear that piece of information in the waiting room of a hospital and how differently people can react in that moment. ...

Katie, Certified Child Life Specialist talks with Cortney Given, Life Coach and Host of the Mindset for Medical Moms Podcast. Cortney could have never guessed that the high school paper she wrote HLHS would be given to her second daughter. Having just moved to Hawaii to start a family adventure, Cortney and her daughter had to relocate back to California for medical care. In this episode, we talk about: +How living apart from her oldest daughter and husband to seek medical care was challenging a...

"It was a life or death... that was our life and we rose to the occasion." Katie, Certified Child Life Specialist talks with Laurie Strongin from Hope for Henry. We talk about: +How parenthood started out with hearing the news no parent wants to hear +How Laurie's growing family lived out of hotels and Ronald McDonald Homes for years +The impact her first born's death has had on his siblings +How the first birthday without a "birthday boy" sparked a mission that has reached over 55,000 children ...

Katie, Certified Child Life Specialist talks with Sara Olsher, mom, cancer survivor, and owner of Mighty and Bright. Not only does Sara talk with us about getting diagnosed with breast cancer at the age of 34, but she also talks about how she went through it as a single mother navigating life with a six-year-old. We talk about +How she advocated for herself and encourages parents to ask the same things for themselves that they do for their children +How asking for help was non-negotiable and ...

Episode 69 | Liza's Story - A daugther with Lyme Disease "I don't think I would have ever done the work on myself had it not been for my daughter's struggle." Katie, Certified Child Life Specialist talks with Liza Blas from Very Happy Stories. We talk about: +How Liza found her purpose and began her own healing journey +Liza believes her daughter's highly sensitive characteristics played into her chronic health issues +Resources to help other parents going through experiences like theirs Resou...

"We had to learn everything we could because our son's life was literally on the line." Katie, Certified Child Life Specialist talks with Todd and Morgan who just a few weeks after the birth of their first child were faced with the truth that he had a life threatening condition called Biliary Atresia. The cure? A liver transplant. Despite the many challenges they faced, Todd and Morgan talk about: +How they used family to be their "google doctors" +How to find your voice during bedside rounds...

"I think this may be a parent's worst nightmare." Katie, Certified Child Life Specialist interviews Holly, mom to three children living in Northern California. Holly's son, Austin, was typical until just after his 1st birthday, then started regressing in gross motor including balance and weak tone and eventually spasticity, which is their biggest concern to this day. Holly has a sense of humor and outlook that will make you instantly feel connected to her and her family. She talks about the cr...

Mijha and her husband live in Atlanta with their three daughters—ages 9, 5, and 8 months at the time of this conversation with Child Life On Call. Her middle daughter, Violet, was born with challenges that became evident only months after birth, leading the family on a journey through genetic testing, therapies, advocacy, and acceptance. Violet's Early Story Violet spent two nights in the NICU after birth due to jaundice. Though prenatal testing showed no abnormalities, and doctors initially s...

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"It's been rough. It's like your heart is in two different places." Katie, Certified Child Life Specialist interviews Madeline, a mom from Utah that shares her son's experience with having a rare form of skeletal dysplasia and how her daughter has dealt with their journey. Madeline is host of The Rare Life podcast which was inspired by her son, Kimball after his arrival into the world. In this episode, Madeline walks us through what it's been like for her daughter. Madeline is a fierce, inspi...

Annie, Certified Child Life Specialist interviews Lindsey, mom to Memphis a son who suffered from Infant Botulism. Lindsey is an experienced mother of three when her son, Memphis, came into the world. She breastfed him like she had her others and when he started refusing to nurse and acting sleepy, she took him urgent care. After two urgent care visits had concluded that Memphis had a cold-virus, his symptoms continued and she took him to the ER where he was quickly diagnosed with Infant Botulis...

Katie, Certified Child Life Specialist interviews Dafne, The Chronic Illness Coach. Dafne is mom to three college-age kids and she and her husband live in Houston, Texas. In this episode, we talk about how her children all suffer from chronic illness: Juvenile Type 1 Diabetes, Juvenile Psoriatic Arthritis and Juvenile Ankylosing Spondylitis. She describes how: *Finding a medical team who includes you as the parent is important *Searching for a tribe of people who understand is worth the effort *...

Katie, Certified Child Life Specialist interviews Shay Shull from Mix & Match Mama. Shay is a cookbook author, lifestyle blogger, travel agency owner, wife and mama who loves making every day special for my family. Shay is mom to four kids and she and her husband live in McKinney, Texas. Today, we talk about her daughter Ashby and how their family copes with Klippel-Trenaunay syndrome (KTS). Ashby is one of her adopted children from China and has had over 22 surgeries since joining their family....

Katie, Certified Child Life Specialist welcomes back Shani (a.k.a. Child Life Mommy) to the podcast. Shani is a Certified Child Life Specialist who has a private practice in Northern California and you can learn more about her community-based program in a previous episode here. But, today Shani puts on her "mom hat" and talks about the journey of having a child with learning differences like #anxiety, #adhd, #dyslexia and #dysgraphia. She describes how: *She has had to learn to advocate to get h...

Katie, Certified Child Life Specialist interviews Amanda, mom to two micro preemie twins born at 23 weeks. Amanda and her husband met at Baylor University and had a normal pregnancy and delivery with their first son. Their second go at getting pregnant was not as easy and included fertility treatments, bed rest and an traumatic, emergent c-section at 23 weeks. She describes how: *Her faith was instrumental for getting through their experience *Detailed preparation from NICU team before hand help...