Threads of Resilience Sewn by Heart Moms and Their Children with CHDs

In this episode of Heart to Heart with Anna we welcome Frank Jaworski back to the program. Frank shares information about anesthesia when patients go to the electrophysiology lab (EP lab), especially when they need to undergo an ablation.

Frank is a certified, registered nurse anesthetist (CRNA) and he has been delivering anesthesia for over 23 years. One of his favorite departments to work with is the EP lab. In this episode, Frank shares some tips to help those in the congenital heart defect community reduce their concerns when visiting the EP lab, he offers some helpful questions patients can ask their anesthesia providers, and even shares some tips for how to reduce anxiety during their EP visits.

The 2nd and 3rd Segments involve Anna reading from The Heart of a Heart Warrior Volume Two: Endurance.  This is one of the newest books from Baby Hearts Press. This is the second in a 3-book series of essays and works of art by adults with congenital heart defects.

In this podcast episode, Anna will read from the front matter of the book, including the Foreword, Preface, and Introduction.

Baby Hearts Press is hosting a Book Study for those interested in meeting some of the contributors to ask questions, as well as an opportunity to share their own experiences related to the topics discussed in the book. The Book Study for Volume Two begins on Thursday, March 24th from 5-6 PM Central Daylight Savings Time and runs for 4 consecutive Thursdays. To get a ticket to attend for only $10 per session, visit https://www.babyheartspress.com.

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When Megan Houpt made the heart-wrenching decision to pursue adoption over pregnancy due to her heart condition, it struck a chord with me as a heart mom. Together, we unfold her narrative in this episode, navigating the complexities of adoption with a CHD. From the intricate dance of home studies to the emotional synergy with a birth mother, we journey through Megan's path to motherhood. The adoption landscape can be arduous, yet it's traversed with hope and culminates in the joyous arrival of Hunter Hart, a name rich with significance. (https://www.facebook.com/HLHSMeaganHoupt)

In the second segment of the podcast, we continue reading from The Heart of a Heart Warrior Volume One: Survival. This week, we complete Chapter 3: Being Active with CHD.

The courage of those facing congenital heart defects takes center stage as we share stories of triumph and transformation. Hear how heart warriors like and Alicia Lynch and Megan Tones find ways to be active, despite having complex congenital heart defects.

Megan takes us on an Egyptian odyssey that defies the ordinary. Imagine scaling Mount Sinai and wandering amidst ancient temples, all while balancing the intricacies of medical needs with the thrill of adventure. Her narrative captures the essence of wanderlust, peppered with humor and humanity, proving that even with health challenges, the zest for exploration knows no bounds. Alicia inspires us with her journal entries which lead us from a time of despair to a time of rejoicing.

In Chapter 4: CHDs Around the Globe

Amy M. Le, Ellen Banoub, and Belen Blanton channel their battles into creating waves of change and offering a helping hand to others within the CHD community. Amy's pivot from a tech giant to a champion for indie writers, Ellen's leap from a CHD survivor to a beacon of support, and Belen’s recounting of finding God’s mission for her showcase the remarkable resilience and tenacity inherent in our human spirit.

Join us, and let these tales of bravery, resilience, and the indomitable will to embrace life’s adventures inspire you.

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Navigating life with congenital heart defects (CHD) is a journey of resilience and emotional fortitude. As I converse with my fellow heart mom, Rita Scoggins, we unearth the layers of complexity that come with raising adult children affected by CHD. This episode goes beyond the clinical; it’s an intimate foray into the emotional and logistical preparations for life's greatest certainties, including power-of-attorney arrangements and will preparations, while also considering the implications for our adult children and beloved pets upon our passing.

Segment 2 showcases co-editors Megan Tones and Anna Jaworski reading Chapter 2 of The Heart of a Heart Warrior Volume One: Survival

The heart of the chapter beats to the rhythm of personal stories that exemplify the myriad ways individuals with CHD find identity and purpose. From Hope’s inspiring transition and embrace of her true self as a transgender woman, to Jason Crutchley's dedication to volunteerism, and Christie Sillman's leap into a nursing career, these narratives are a testament to the strength found in the CHD community. These journeys illuminate how our warriors, often dubbed so for their battles against physical conditions, also strive for agency and the power of choice in defining their lives.

Segment 3 showcases the first two essays from Chapter 3 of The Heart of a Heart Warrior Volume One: Survival

Physical activity, often seen as a mountain too high for those with CHD, emerges as a pinnacle of personal triumph in these essays. Lorrie Hill's career pivot, and Michael Hills' adaptation to sports outside his initial dreams, are stories that underscore the tenacity of the human spirit. These anecdotes are not just about overcoming limitations, but about redefining personal goals and embracing one's passions, all while living with the realities of a congenital heart condition. Join us for this heartfelt exploration of life's challenges and victories.

Won’t you join us while we discuss these essays in our next Book Study? Co-editors Megan Tones and Anna Jaworski are joined by contributors to the book and others who want to discuss the topics raised in the book. These 1-hour sessions take place on Zoom. Visit Baby Hearts Press for more information.

Did you miss hearing Chapter One or the Front Matter of the book? Here are the links:

Front matter (Foreword, Preface, and Introduction): http://tinyurl.com/H2HwAnnaE434

Chapter 1: http://tinyurl.com/H2HandChapter1

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Navigating the torrent of emotions that come with being a heart mom to an adult child, Rita Scoggins and I, Anna Jaworski, unfold the layers of our unique journey. Our intimate conversation traverses the evolution of care, from the hands-on nurturing of our children's younger years to the complexities of supporting their maturity and independence. We delve into the potent mix of pride and concern, sharing stories that resonate with anyone who understands the pull of a parent's heartstrings as their children, like Rita's daughter Victoria, and Anna’s daughter Hope, carve out lives shaped by both their challenges and triumphs.

This episode continues with reading from The Heart of a Heart Warrior Volume One: Survival. In this episode, co-editors Megan Tones and Anna Jaworski, take turns reading essays from the book. In Chapter One we read the narratives of heart warriors who've faced body insecurities and the trials of scoliosis with courage. Laura Ryan's story, in particular, shines as a beacon of hope; her transformative experience at the waterslides in Lancaster, learning to embrace her surgery scars, offers a deep dive into the power of empathy and connection. We hear how individuals like Michael McKelvey and Dajah Scrivner channel their pain and resilience into poignant expressions of life with CHD.

Our episode doesn't simply share stories; it offers a lattice of support, exploring how adaptive clothing and familial love can buoy spirits amidst adversity. As we discuss the importance of finding strength in community and the solace of shared experiences, we invite you to join us in a space that celebrates overcoming obstacles and the beauty of human connection. For all who walk the path with heart-defect warriors, this conversation is a testament to the enduring spirit and the ties that bind us all.

Rita’s other podcast episodes:

Rita, Victoria, and Heidi Scoggins on The CHC Podcast: ‘Taking Control of Your Heart Condition’ 

Rita as a Guest Host on Heart to Heart with Anna interviewing Laura Ryan. ‘Heart Warrior Mom Raising Children to Adulthood’

Rita and Victoria Scoggins on Heart to Heart with Anna: ‘Congenital Heart Defect Awareness 2015’

Learn more about our The Heart of a Heart Warrior Volume One: Survival Book Study and join us to discuss the book and share your stories. 

Anna's Buzzsprout Affiliate Link

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This episode of Heart to Heart with Anna involves news regarding Heart Month 2024. In this episode, you’ll learn about who our guest next week will be, how Congenital Heart Defect Awareness Day came to be and what it has evolved to. You’ll also learn about how Baby Hearts Press, a publishing company devoted to the CHD community, has a special sale for Heart Month and how we’ll be conducting a Book Study of Volume One of The Heart of a Heart Warrior. 

You’ll also learn about the new writers’ platform we’re working with to create some new books. Scribophile is a place for writers to come together to support one another. Join us in the Heart to Heart group for information for the CHD community.

Lastly, I’ll be sharing some behind-the-scenes information about The Heart of a Heart Warrior, our Kickstarter campaign, and why I’ve decided to record the audiobook this month—and give it away freely on Heart to Heart with Anna. 

This episode features the front matter of the Kickstarter edition of the book. The Kickstarter edition of The Heart of a Heart Warrior contains the first three volumes in one hardcover edition of the book. In this podcast episode, you’ll hear me reading the poem that starts our book—‘I am a Miracle Child’ by Becca Atherton, the Dedication, Foreword, Preface, Acknowledgements, Introduction, and the opening to Volume One: Survival.

Helpful Links:

Baby Hearts Press Submission Page: https://www.babyheartspress.com/submissions

Baby Hearts Press Bookstore: https://babyheartspress.myshopify.com/

Scribophile Heart to Heart Group: https://www.scribophile.com/groups/heart-to-heart-writing-group/

Victoria and Rita’s episode about CHD Awareness: http://tinyurl.com/VictoriaScoggins

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

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Embark with us as we illuminate the enduring pulse of Hearts Unite the Globe, the non-profit championing an array of deeply impactful podcasts. From the heartfelt dialogues of Heart to Heart with Anna to the comforting echoes of Bereaved but Still Me, we're uniting voices across the congenital heart disease (CHD) community. Our mission extends beyond conversation; it's a call to empower, educate, and enrich the lives entwined with CHD and bereavement. We're unveiling exciting tweaks to our website, orchestrated by the talented Lauren England, that streamline your access to our treasure trove of resources and introduce a town hall-style podcast format that embraces the shared experiences of our listeners.

The journey continues as we traverse the landscape of loss and healing, led by the poignant narratives from Michael Liben's Bereaved But Still Me to the hope-infused Everyday Miracles. As executive producer, I wear my pride on my sleeve for the platform we've created that fosters profound conversations on life's toughest trials. Dive into the compassionate offerings on the HUG website, where support groups, therapy options, and unique programs like bravery beads await to guide individuals at every step of their heart journey. Discover the myriad of voices represented in our podcasts, including the wisdom of those who've walked the path of grief, and let them be your beacon of light in the darker moments.

As the episode draws to a close, we raise the banner for the unwavering support these families need, recognizing the vital role of organizations like the Adult Congenital Heart Association and the Cardiac Neurodevelopmental Outcome Collaborative. The heart's resilience is mirrored in the community itself, where heart-related camps offer solace and solidarity. Your support is the lifeline for our mission, and we invite you to contribute in any way you can—financially, as a volunteer, or simply by sharing our cause. Together, let's forge ahead towards the momentous goal of hiring an executive director, and continue to extend our hand to more families navigating through the world of CHD.

Visit the HUG website here: https://www.heartsunitetheglobe.com

Another way you can help financially is to subscribe via Buzzsprout here: https://www.buzzsprout.com/62761/supporters/new

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Ever wonder about the emotional odyssey of creating a book that captures the essence of human resilience? My co-editor Megan Tones and I, Anna Jaworski, take you on the intimate trek behind "The Heart of a Heart Warrior," from the flicker of an idea to the jubilance of publication. Our conversation unwraps the passion and dedication needed to weave together stories that resonate with the spirit of heart warriors and their families, reflecting on the Kickstarter campaign that turned our hardcover dream into reality. We invite listeners to be part of our ever-growing narrative quilt, emphasizing that the heartbeat of our work is the voices we empower. 

Turning the page, we navigate the nitty-gritty of book formatting, a task as challenging as it is crucial. Converting our labor of love into an e-book format presented us with a labyrinth of technical hiccups, where attention to detail became our guiding light. We discuss the importance of meticulous proofreading and editing, ensuring the stories we hold dear don't lose their essence in translation. The warmth and excitement of the community's embrace of our work remind us that these stories are not just ours—they belong to all who find solace and strength in them.

Our episode rounds off with a look at the power of collaborative writing platforms, particularly Scribophile, where we foster the growth of aspiring authors. By moving beyond the confines of Facebook groups, we provide a structured sanctuary for creativity and constructive critique. Sharing the touching narratives of CHD siblings, we shed light on the oft-overlooked heroes whose stories of strength and solidarity are as influential as those of the heart warriors themselves. As we announce future collaborations with co-editors Desiree Vaught and Sheri Turner, we extend an invitation: whether your medium is words or art, your story has a home with us.

To learn more about Baby Hearts Press submissions, use this link: https://www.babyheartspress.com/submissions

Scribophile group link: https://www.scribophile.com/groups/heart-to-heart-writing-group/

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Have you ever felt the tug of curiosity towards an approach to mental health that strays from the conventional path? Today, I'm thrilled to welcome Valerie Chavez MD and Ryan Hunter to share their insights on functional medicine's transformative role in mental health care, especially for those touched by congenital heart defects. Together, we unpack the personalized care that functional medicine offers, emphasizing the power of lifestyle changes and stress reduction to unleash the body's remarkable healing abilities. Our conversation reveals how addressing the unique underlying causes of health issues leads to profound improvements in emotional and physical well-being.

A brush with the serene world of aromatherapy during our discussion spotlights the soothing properties of essential oils, proving invaluable within the high-tension walls of an ICU. We recall how the scent of chamomile provided a tranquil harbor for anxious parents navigating the stormy seas of a child's hospital stay. Through anecdotes and expert advice, we navigate the practicalities of integrating these calming fragrances into stressful environments, while also honoring the deeply rooted emotional connections our sense of smell can evoke. It's a sensory journey that underscores the link between our olfactory experiences and our mental landscape.

As our heartfelt dialogue draws to a close, we explore the interplay between spirituality and mental health. Discover how HeartMath's biofeedback tools bring peace and coherence to both adults and children and delve into the ancient wisdom of the Four Agreements, discussing its potential to shape our mental health practices. We also confront the theme of forgiveness, its role in our lives, and the catharsis of releasing resentment. As I bid you farewell until our next conversation, I invite you to continue exploring these topics on the CHC Podcast – Congenital Heart Conversations, where we unite, inspire, and empower the Congenital Heart Disease community through stories and support.

Websites You May Find Helpful:

Valerie Chavez’ website: https://gutmend.com/

Ryan Hunter’s website: https://functionalcoachingtx.com/

HeartMath website: https://www.heartmath.com/

Book Mentioned in the Episode which may interest you:

The Four Agreements by Don Miguel Ruiz

It Didn’t Start with You: How Inherited Family Trauma Shapes Who We Are and How to End the Cycle by Mark Wolynn

The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma by Bessel A. van der Kolk

When the Body Says No: Understanding the Stress Disease Connection by Gabor Maté, M.D.

Link to the first functional medicine episode:

Exploring Functional Medicine: Harnessing the Power of Essential Oils and Holistic Health Approaches: https://www.buzzsprout.com/62761/13711353

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Baby Blue Sound Collective

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As I sit back and reflect on Heart to Heart with Anna in the year 2023, I want you to celebrate with me, Anna Jaworski, as we mark a milestone of connection and growth within the congenital heart defect community. From the early days on Voice America to our move to Blog Talk Radio and beyond, we've weathered sponsorship storms and emerged stronger, bringing hope and vital information to those touched by CHD. Join me for an intimate retrospective on our top episodes of the past year, recognizing stories that have resonated and sparked conversations, powered by the voices that have made this journey unforgettable.

Stepping into the future, I'm excited to open the doors to compassionate individuals eager to make a difference. Your unique skills can shine in various volunteer roles, from scripting heartfelt narratives to amplifying our reach on social media. Our collective efforts support Hearts Unite the Globe, ensuring that no one walks their CHD path alone. I have a particular fondness for LinkedIn as a hub of engagement—let it be the place where you step forward to join our passionate mission. Together, we will continue to be a beacon of light, wrapping the CHD community in a blanket of support and ensuring that every heart feels heard and valued.

Top 5 2023 Heart to Heart with Anna Episodes:

Link to #5 Navigating the Journey of Parenting Children with Autism and Congenital Heart Defects: A Heartfelt Conversation and Advocacy with two fantastic heart moms — Melanie Letzer and Kelly Blumenthal. https://www.buzzsprout.com/62761/12993576

An Unseen Threat: The Cody Watkins Story of Heart Failure and Recovery https://www.buzzsprout.com/62761/13210321

Link to #4 Myocardial Bridging and Boots Knighton https://www.buzzsprout.com/62761/12585318

Link to #3 Heart Mom and Heart Daughter on Being a Mom https://www.buzzsprout.com/62761/12765679

Link to #2 Cardiac Chronicles and Community Connections: Leigh Kamping-Carder’s Story https://www.buzzsprout.com/62761/12988991

Link to #1 LGBTQ+ and the CHD Community https://www.buzzsprout.com/62761/11968012

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Imagine living in a family where sudden deaths were a tragic norm. That's the reality heart mom Jackie Renford faced before the fateful identification of Long Q-T Syndrome, a genetic heart condition, in her family. Her misdiagnosis and the subsequent loss of her son and daughter have inspired her to become an advocate for early detection and treatment of this life-threatening condition. Journey with us as she shares her family's heart-wrenching story and opens up about the ongoing battle with Long Q-T Syndrome.

Jackie's experiences with Long QT Syndrome open up a world that is often misunderstood. How do you navigate through life when you and multiple family members are affected by a genetic heart condition? Jackie gives us a first-hand account of the symptoms, diagnosis, and treatment of Long Q-T Syndrome, as well as the emotional toll it takes. She emphasizes the importance of regular medical check-ups, cautious medication use, and a proper diagnosis. Find out how her family is rallying around this, the importance of comprehensive medical care, and how they're facing the realities and challenges of living with Long QT Syndrome.

We may not choose the trials we face, but we can choose to find blessings amidst adversity. In the spirit of finding light in the darkness, I share my own experiences of living with a congenital heart defect and the support that has been instrumental in my journey. As we approach the holiday season, I encourage you to join us in providing free programming for the congenital heart defect and bereaved communities. It's through our stories that we realize we are not alone, and it's in our blessings that we find hope. Join us for a profound understanding of Long QT Syndrome and a message of resilience and hope.

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