The Hope and Courage Podcast for CHD Parents

In this episode we talk to the incredibly inspiring CHD adult and author of From the Sidelines to the Finish Line: A Chronic Illness Survivor’s Challenges and Everyday Triumphs Emily Falcon! She has an amazing story of overcoming struggle and achieving what she never dreamed she could. We discuss her Benjamin Button-like life story and how she learned to make the most of every opportunity she was given. She truly displays how to live life to the full while having a CHD diagnosis. We were so inspired by Emily and we know you will be too!

CLICK HERE to get copy of Emily's book From the Sidelines to the Finish Line: A Chronic Illness Survivor’s Challenges and Everyday Triumphs

In this episode we talk to CHD adult and creator of The Heart Dialogues Leigh Kamping-Carder! She is a journalist located in New York with a master's in journalism from NYU and runs the newsletters team at a big media outlet. You will hear her thought-provoking perspective on the part CHD plays in a person's identity, and how the presence of it affects all parts of their life. We discuss the importance of various CHD narratives being shared with the CHD community, exploring the nuances of their stories and appreciating their perspectives. We loved gaining her insight on all of this and more, and we know you will too!

In this episode we talk to CHD parent Grace Harvey! She & her husband live in Michigan where they both work full-time jobs as they try to navigate their family's CHD journey. Grace shares her story about how they make their heart warrior's health, family, careers, relationships, and mental health all priorities along the way. She has some great insights on authenticity and empathy in her work life as well. So CHD families who have two full time working parents, listen up, because you will gain a lot from this episode!

*TRIGGER WARNING* This episode contains discussion about child loss. 

In this episode we talk to CHD parents and James Doss Memorial Foundation owners Carlee & Randy Doss! Five years ago they lost their son James to congenital heart disease and today they talk to us about their grieving process since it happened. We discuss how communication was key to sustaining their marriage during that difficult time, and how community and remembering have been helping them ever since. They have lots of great advice for parents grieving the loss of their child and we learned so much from them sharing their experience with us. The James Doss Memorial Foundation Golf Outing & Banquet is on July 15th, 2023 so make sure you go to their website listed below to sign up or contribute to their incredibly important cause!

Carlee & Randy's Foundation: James Doss Memorial Foundation

In this episode we talk to heart dad and author of the books Steal the Reaper & Hunt the Reaper Todd Hosea! Todd has been a heart dad since 1999 and has so much wisdom to share on taking care of your relationships, letting go of normalcy, and pursuing your dreams on the CHD journey. He also encourages CHD parents that they are capable of so much more than they can imagine. Todd is so inspiring so go listen to this episode immediately!

In this episode we talk to heart warrior & psychotherapist Tracy Livecchi, LCSW ! Tracy shares about her new book Healing Hearts and Minds: A Holistic Approach to Coping Will with Congenital Heart Disease that she co-authored with Dr. Liza Morton. The focus of their book is mental health challenges in the CHD community and it gives tangible solutions for each of those challenges that may arise on the CHD journey. You'll heart a bit about Tracy's CHD story and how she & Liza wrote this book together without having ever met in person. She has such a unique perspective as a heart warrior and mental health profession and you won't want to miss a word of her valuable advice!

In this episode we talk to heart mom & The Love for Littles shop owner Josie Hau! Josie shares the incredible story of her heart warrior Maya, who also has Down Syndrome, and how Josie coped with the difficulties by searching for certainty and magic on her family's CHD journey. She also discusses how her family made the decision to have more children after Maya and what helped her in the decision making process. You'll hear all about her shop The Love for Littles and the support bracelets she makes to help ease the burden of families who are struggling. You won't want to miss a minute of this episode, so go listen now!

In this episode we talk to heart warrior Faith Brackett! This incredible young woman has accomplished so much in her life thus far, from winning Ultimate International Miss Maine to starting her own foundation called CHD Tablet Talk to help keep children with CHD connected and engaged while experiencing lengthy hospital stays. We introduce you to her family's motto "Do it but do it differently" and how that's helped her with problem solving ways to normalize her life experiences. You will be so impressed and encouraged by Faith's hopeful story!

In this episode we chat with Heart Mom & Pediatric Cardiology Echo Tech Brittany Freese. We discuss her unique position as a heart parent & a medical profession in the cardiology world, and what kind of perspective that gives her on her family's CHD journey. She encourages us & other CHD parents to enjoy the moment we're in with our heart warriors and to not let the past or future hinder it. You'll love hearing from Brittany as much as we did!

In this episode we chat with Heart Warrior Letitia Aloysius! She is 21 years old and is wise beyond her years. You will learn so much from her about how to talk to young heart warriors about their CHD, and how to make sure they know that they are MORE than their CHD. We loved learning about what her day to day looks like as a young adult heart warrior & more about who she is! 

In this episode we had the honor of talking to Tom Dahlborg, and expert & leader in the world of healthcare. He is the President and CEO of the Dahlborg HealthCARING Leadership Group with 40 years of experience in positioning leaders (in healthcare and beyond) to engage heart and mind in all they do, to embrace and embody compassion, care and love, while leveraging science and evidence, to honor their callings and achieve betterment for all. We chat a lot about how the working relationship between healthcare providers and CHD patient families. He had so many great insights and advice on this topic and you wont want to miss a minute of it!

In this episode we had the pleasure of talking to CHD Parent Jenny Muscatell. Jenny is an author, CHD advocate, and co-founder of The Heart Community Collection. We learn about her adult heart warrior Faith, and what it was like for Jenny for her daughter to be on the forefront of receiving surgeries that are now common practice today. Jenny shares about her faith carrying her through the CHD Parent experience, and we discuss how normalizing your heart warrior's CHD experience helps them cope with their disease. We loved hearing from a CHD Parent who has so much experience and wisdom!

In this episode we talk to CHD Parent & Film Writer/Producer Michael Katchman. We discuss his incredible new documentary entitled "Building the Field: Lifelong Care for CHD" and how important it is that children who have CHD and have received open heart surgeries don't get lost to care. Did you know that 90% of adults with CHD do not receive regular medical care for their CHD?! 90%! The medical field is now noticing what a vital need there is to ensure CHD patients receive lifelong care, both physically and emotionally. Michael's film follows the stories of 4 adults with CHD and their journey with lifelong care for their CHD. IT IS A MUST SEE EVERY CHD PARENT!

You can see Michael's film on Youtube, or just click below on the title!

*TRIGGER WARNING* This episode contains discussion about child loss. 

In this episode we have a beautiful conversation with our friends Kayla & Kevin Warnick about their heart warrior Jacob. If you, or someone you know, has suffered the loss of a child, there is much hope, wisdom, and encouragement to be gained from their story. We discuss their journey through diagnosis, birth, life, and loss, and how they saw glimpses of God's grace every step of the way. They share about their grief, how they didn't run away from it, and how they didn't let it steal their opportunities for joy. You get to see what their life is like now, 8 years after their loss, and all the ways Jacob's life and legacy still impacts their family of 5.

Join us for a deep dive into the Supporter & Researcher profiles from our CHD Parent Profile Assessment! We talk about what makes these unique CHD Parents so great, what skills they bring to the table, and where there is room for growth. We built the CHD Parent Profile Assessment to provide a personalized resource to help you better understand and navigate your unique experience. *Disclaimer: We are not certified professionals and this is by no means a scientifically proven resource. This assessment was compiled through our personal research, knowledge, and experiences.*

Join us for a deep dive into the Commander & Performer profiles from our CHD Parent Profile Assessment! We talk about what makes these unique CHD Parents so great, what skills they bring to the table, and where there is room for growth. In the next episode we will talk about the Supporter & Researcher CHD Parent profiles. We built the CHD Parent Profile Assessment to provide a personalized resource to help you better understand and navigate your unique experience. *Disclaimer: We are not certified professionals and this is by no means a scientifically proven resource. This assessment was compiled through our personal research, knowledge, and experiences.*

In this episode, we introduce our new free CHD Parent resource, the CHD Parent Profile Assessment! Just as every CHD child is different, so every CHD Parent is unique in how they experience and process the trials CHD brings. Having a child with CHD can be a very isolating experience, and when we experience it differently than our partner or other CHD Parents, it can increase the feeling of loneliness and hopelessness. We built the CHD Parent Profile Assessment to provide a personalized resource to help you better understand and navigate your unique experience. *Disclaimer: We are not certified professionals and this is by no means a scientifically proven resource. This assessment was compiled through our personal research, knowledge, and experiences.*

In this episode, we talk to our friend Dr. Jonny Byrnes, a cardiologist in the Cardiac Intensive Care Unit at Children's of Alabama. He is a humble hero not only to our family, but to the numerous families he serves everyday. Dr. Byrnes played a pivotal role in our family's CHD story. You will love hearing from Dr. Byrnes about the important of relational connection in CHD Families, incredible innovations in cardiology, and so much more!

In this episode, we talk to heart warrior, author, and CHD advocate Tori Geiger and her father Bob Schroeder. It was so special to hear from them both, and getting their perspective on how CHD shaped their lives. Bob and his wife did an amazing job changing their family's perspective on Tori's CHD, and help her view it as something that could give her purpose and valuable life skills. Tori is a light in the CHD & chronic illness world, inspiring others to see how their diagnosis is their strength. 

In this episode we chat with our son's previous cardiologist, and new Chief of Cardiology at Children's Health Dallas, Dr. Nicolas Madsen. He shares his insights on the bright future of pediatric cardiology and what innovations we as CHD Parents can be excited to see come to fruition. We also discuss the nuances of the CHD Parent - Cardiologist relationship and how to build one that is most beneficial for your family. We think you'll love him as much as we do!  

We’ve compiled and discuss your answers to the very important question, “How can friends and family support CHD families in the midst of their hardships?” We're so appreciative of any help friends and family offer, but they are also always asking us this question. We want to provide them with a guide map that will help meet the needs of the CHD family they love. You all had wonderful tips to share. This is an episode you will want to share with your community!

This episode features CHD Parent Brita Marcy from Happy Heart Mama (@britamarcy) on Instagram. She is an amazing CHD advocate, and we discuss what drew her to advocating for Heart Mamas & CHD. We spend time chatting about the affect of CHD on siblings, how important it is to practice self-care as a CHD Parent, and she tells us all about her Heart Warrior Jack.  Brita's new website is www.happyheartmama.com! 

In this special episode we continue telling our family's CHD story. In the telling the hard but happy story of Harding's birth, we also cover, and give tips for, navigating the complex and confusing healthcare system. We also give you a list of items to bring to the hospital both for your CHD baby and yourself. Lastly, we talking about the importance of taking opportunities to find the joy in your circumstances. We hope this episode is very helpful! 

Join our incredible conversation with Alicia Wilmoth. As a Physicians Assistant, CHD Survivor, wife, and mother she is an inspiration to us to allow CHD children to live a life without restrictions, and to appreciate the goodness of life. In this episode, we discuss Alicia's life with CHD, how much she appreciates her siblings and their support, what she considered when starting her own family, and encouraging advice she has for CHD Parents. After meeting Alicia, we felt so hopeful for Harding's future, and we're positive you will feel hopeful for your child's future as well.

We're back with Part 2 of our fantastic conversation with Richard Schwindt MSW, RSW! We cover how self-knowledge gives CHD children and survivors more freedom to be adventurous, CHD Parents making decisions out of love instead of fear, and the 4 important questions for health assessment and discernment that help both CHD children, survivors, and their caregivers. 

This interview was so good we had to split it into two parts! In this episode, we talk to CHD survivor, counselor & psychotherapist, and author of the award-winning book Emotional Recovery from Congenital Heart Disease, Richard Schwindt MSW, RSW. In Part 1 of this episode, we hear a bit about Richard's CHD story, and we discuss the importance of learning how to take risks and manage anxiety, both in yourself as a CHD parent and your CHD child. 

In this episode we chat with Laurel Stein, the Care Manager of the Single Ventricle Clinic at Cincinnati Children's Hospital Medical Center (CCHMC). We discuss the importance of empathy in the CHD world, and empowering parents in the medical care of their CHD child.  

In this episode Tom and Kat Hansen tell the story of their son Harding's CHD diagnosis, and how they struggled, but ultimately found peace, in the following months leading up to Harding's birth.