Caregiver Stories Episodes

Tanisha tells a story of strength and perseverance as her son Jaleel was born with a lower urinary tract obstruction. This story highlights the powerful ways Tanisha and her husband, Quentin work together as a team for Jaleel and their family. From her experiences in the NICU and beyond, Tanisha created a community to support NICU Medical Moms. [3:52] The journey to motherhood for Tanisha [6:13] Learning that Jaleel had a lower urinary tract obstruction at her 20 week anatomy scan [9:30] How Tan...

Paola shares the shocking diagnosis her son received as a newborn of ADA-SCID (Severe Combined Immunodeficiency.) This powerful story a he shares how she navigated hospital life during the beginning of the pandemic and her journey with postpartum depression. She shares words of wisdom on how to deal with the feelings that come when your child gets a life altering diagnosis. [5:22] Paola describes the grief she experienced with Jakob's diagnosis [7:10] She describes the shock and acceptance of th...

"Never listen when they tell you your child will not, encourage them to do the best they can do"- Belinda Hammond, CCLS Belinda shares her son's journey with low tone, epilepsy and autism and how her professional and personal experiences collided, giving her an invaluable perspective as a parent and professional. This episode is in our top 5 most downloaded episodes to date. [4:39] Belinda notices her son is not meeting some major developmental milestones [5:17] Receiving a low tone diagnosis ...

On this episode of the podcast, you will hear an amazing story of resilience and hope.This episode originally aired back in August of 2020. This is the most shared of all of our podcast episodes; you will quickly learn why after listening to this inspiring story. 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 a wide lens helped them turn Ryan...

Episode 127 | Courtney's Story - A daughter born at 25 weeks [MOST DOWNLOADED] At just 25 weeks pregnant, Courtney was diagnosed with pre-eclampsia and was hospitalized. Just 5 days later and after a terrifying emergent c-section, she would meet her daughter, McKenzie. In this episode, Courtney talks about her entire experience from her own hospitalization and her daughter's 5-month stay in the NICU and eventually going home. She talks about the balance of being a single, working mom and the str...

In this episode, we will hear from Laura about navigating hospital life and finding the balance between caring for her family and taking care of herself. She focuses on the importance of self care and how it has made her be the best version of herself. Laura shares how life after the hospital doesn't have this glamorous feeling but is another marathon in itself. In this episode, she speaks on the positive takeaways from this journey. This episode is full of nuggets of wisdom that you will not wa...

Friends, you are not going to want to miss this episode! On today's episode of the podcast,we hear about Laura's Birth story and the beginning of her son Trey's journey with congenital Leukemia. Laura shares the raw emotion and grief when she and her husband learn of Trey's diagnosis. She goes intimately into detail about her first time seeing her newborn son, how it broke her to her core and how she began to pick up the pieces. Laura shares how her friends rallied behind her during this extreme...

This episode is sponsored by SmileMakers! On today's episode, Annie Jones, CCLS is our guest host! We will hear from Sarah about her daughter Adalee having an ischemic stroke with no pre-existing conditions. With strokes, the recovery process is different for every individual and doctors initially thought she may not have a full recovery. Sarah shares how her faith got her through this period of time, her daughter's remarkable recovery and self care tips for parents who have children with medica...

This episode is sponsored by SmileMakers Abbie Pabon and Emily Enstad share their motherhood journeys through the pandemic, how it shaped their careers and how they created a company that gives hands on tools to help children regulate and express their emotions. In this episode, you will learn more about: +Learn how to empower children with tools and strategies they can access in moments of dysregulation. +How to be self-compassionate as a parent +Learn about current barriers for parents, and...

Today we have a guest co-host AND a guest! Our guest co-host is Sehreen Noorali, and you may remember her from Episode 112 of the podcast. Her younger daughter has some medical needs and has been through neurosurgery. Like Sehreen, our guest Michelle has also spent her fair share of time in the rehab setting. Her son, Gideon, was born with heart defects that required hospitalization. In this episode, we talk about… [6:25] Michelle's family [8:08] Discovering low oxygen levels in a newborn [11:24...

This is a very worthy repost episode, as April is Limb Difference Awareness Month. We first shared Ashlyn's story over a year ago, but I wanted to bring it back. The two things that I continue to take away from this story is the true partnership between Ashlyn and her husband, as well as the importance of having fun with the cards you're dealt. I encourage you to listen to her story, follow her on Instagram, and share her page and this episode so others can learn more about limb differences. In ...

Today's guest expert is Jessica Lewin, a child life specialist in the school setting. We talk about some of the key concepts that she wants parents to know are affecting their middle and high schoolers. Jessica and I discuss suicide, the impact of school attendance, and tweens' and teens' psychosocial roles within their social systems. In this episode, we talk about… [2:09] Jessica's background and work in the Child Life field [7:10] Psychosocial development in middle and high school [14:09] Th...

Today I'm talking with Amy, who discovered her son had a brain tumor after noticing something different about his eye one morning. The brain has a lot of jobs, and it has affected his everyday life in many ways. Amy is an incredible mom, and she shares their story so beautifully. Her ultimate goal is to support other parents going through similar things. In this episode, we talk about… [2:19] Amy's family [3:59] Finding out about her son's brain tumor [8:55] Emergency brain surgery [14:32] Compl...

Today we have another story from a heart mama. I wanted to fit them all into February, but I couldn't quite make it. So we are just creeping into March here with Dimitra and her story. Her son also had transposition of the great arteries (TGA), which we heard about in last week's episode. It's interesting to see where the two stories are parallel and where they differ. In this episode, we talk about… [1:51] Dimitra's family and background [3:37] Adapting to changes outside of our control [5:19] ...

Here we are in the last week of February, which is heart month, and I am so honored to bring you Melissa's story. We have discussed other heart defects before, such as tetralogy of fallot and hypoplastic left heart syndrome. This is the first time we are talking about transposition of the great arteries, or TGA. TGA is diagnosed in utero and requires surgery within days. I know Melissa's story will bring so much value, comfort, and validation to other parents. In this episode, we talk about… [1:...

Today's guest, Elizabeth, had never heard of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infection) when her son was diagnosed with it. PANDAS is a tough diagnosis, because some doctors believe in it while others do not. Having a child with this diagnosis that only some doctors believe in is incredibly hard to navigate, to say the least. PANDAS is an autoimmune disease closely related to infections, so you will hear Elizabeth talk a bit about how her son...

Today's guest is Maureen, and she found out at her 20 week ultrasound that her daughter had clubfoot. She shares what families have to endure when confronted with a child with clubfoot. You'll hear about B and B (boots and bar), serial casting, surgeries, doctors' visits, and the amount of parent intervention that has to take place in the first four to five years of these kids' lives. In this episode, we talk about… [2:07] Maureen's family and background [4:53] Getting a clubfoot diagnosis in ut...

Today's guest is Betsy, from an organization called Hope for HIE (Hypoxic Ischemic Encephalopathy). HIE refers to brain injury in an infant, and Betsy will share more specifics about the condition and her family's experience with it in our discussion. I originally learned about this organization through working in the NICU here in Texas, and it is a wonderful source of support for parents struggling in completely unknown territory with their babies. In this episode, we talk about… [1:19] HIE: Hy...

As we kick off the new year, my guest Christiana is sharing the story of her son's osteosarcoma. Nathaniel has passed away, but his family created Nathaniel's Childhood Cancer Foundation in his name and legacy. Christiana walks us through his experience with osteosarcoma from the beginning, and she shares details about his battles with childhood cancer. In this episode, we talk about… [1:27] Introducing Christiana and her family [3:09] The beginning of Nathaniel's story with osteosarcoma [11:49]...

It's the 100th episode! Today I'm opening up a bit and letting you get to know more about me as well as more about what a child life specialist does. I will be sharing my thoughts about the holiday season, and then I will answer some questions about child life. In this episode, I talk about… [2:57] The child life perspective on dealing with holiday feelings [7:21] A commonly held belief about my role that I passionately disagree with [8:41] What I wish my younger self knew about being a child li...

My guest today, Kat, is sharing her story as a child and now as an adult with chronic illness. I think it's important for us to change our perspective a bit and hear what the patient has to say. Kat is the community manager at The Mighty, and she has also written two children's books: Migraine and Mia and Surgery on Sunday. She is such a creative spirit, and she gets really honest with us about what it was like being a teenager in the hospital. She shares what her parents did that worked well, w...

My guest today, Samarrah, is sharing her story about her son being diagnosed with a brain tumor. I encourage you to be present as you listen to her story and take the wisdom she is offering. In this episode, we talk about… [1:49] Introducing Samarrah and her family [2:53] Getting the diagnosis of an ependymoma brain tumor [6:19] Processing the brain tumor diagnosis [8:44} Treatment for ependymoma [12:43] The role of parents in a child's cancer treatment [15:32] Finding support and community [19:...

My guest today is Carrie Holt. Carrie is one of those people who, when you talk to her, you feel like you've known her your whole life AND it feels like you're there in the room with her. She has such a great perspective on having a child with a diagnosis and special needs, and she also hosts a podcast called Take Heart Special Mom. I'll be sharing a bit about what I'm grateful for this Thanksgiving week, and then we will jump into Carrie's story. In this episode, we talk about… [1:24] What I a...

Meet the author, Priscilla Morgan. She gives us exactly what we need to know to start a gratitude journal with kids, without making it a chore. She teaches us how to find the emotional connection with gratitude to make it meaningful, as well as the power of what gratitude can do now and in the future. Gratitude Journal for Kids by Priscilla Morgan is available on Amazon and Barnes and Noble. In this episode, we talk about… [1:00] Priscilla's background [2:45] Helping children navigate the journe...