Heart Month News February 2024 and an Audiobook Surprise!

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

Transcript

H2HwAnna Feb_ 6_ 2024

[00:00:00] I have decided for Heart Month, I'm going to be recording the book The Heart of a Heart Warrior and giving it away

[00:00:09] free for you all to listen to. 

[00:00:15] Welcome to Heart to Heart with Anna. I am Anna Jaworski and your host. I am also the mother of an adult with a congenital heart defect.

[00:00:22] She was born with a single ventricle heart and has had three open-heart surgeries and is post-Fontan. That's the reason I am the host of your program. Today's episode is going to be a little bit different. I don't have a guest, but next week I am planning on having a wonderful guest on the program.

[00:00:40] She's a dear friend of mine, and we're going to be talking about what it's like to be the parent of an adult with a congenital heart defect, our concerns and our needs as our children age change. My dear friend Rita Scoggins and I will be talking about how things change as our children become adults and how our job of parenting still isn't over, even though they are of majority age. 

[00:01:10] Today, I'm going to share a few different things with you, but what I'm most excited about is I have decided for Heart Month to record The Heart of a Heart Warrior. Many of you know that we actually had a Kickstarter for The Heart of a Heart Warrior.

[00:01:26] This is the book I wish somebody would have given me 29 years ago when my baby was first diagnosed with a heart condition. At that time, we were told that our kids probably weren't going to make it through infancy, much less early childhood; it was almost unfathomable to think that they would become adults So when I put together The Heart of a Mother the last chapter in the book was dedicated to adults reaching certain milestones and that perhaps was my favorite chapter because that was the chapter that gave me the most hope.

[00:02:02] The whole book was about providing hope to mothers who had children with heart defects. But that last chapter, we talked about a boy achieving his bar mitzvah. We talked about a young lady getting her first car. These were milestones that we just didn't even really dare think that our kids could achieve and here I am 29 years later and my child wrote for the book, The Heart of a Heart Warrior. So it's a dream come true for me. I have decided for Heart Month, I'm going to be recording the book The Heart of a Heart Warrior and giving it away

[00:02:39] free for you all to listen to. And I'm hoping that you'll want to visit the website and buy a copy yourself. This is such an inspirational book, friends. And I know I'm biased because I am the editor, but the people that wrote for this book, 40 adults with a variety of congenital heart defects.

[00:03:02] Most of them have had surgery, but not all of them. 

[00:03:05] They all have amazing stories to share with us, I hope you all enjoy listening to it.

[00:03:10] Each week I will be releasing more of the book. So today will be the first part of the book and I can't wait to share it with you. But before that, I'd like to share a little bit of news with you. 

News: Heart Month 

[00:03:24] As many of you know, it is now February 6th when this episode is coming out and that means it's heart month.

[00:03:31] For many of us who have been in the CHD community for years, we know that means a variety of things. Many years ago, we started petitioning our governors and other politicians around the world to recognize February 14th as Congenital Heart Defect Awareness Day. I remember going to the Texas State Capitol and having the governor give us the proclamation and taking photos with us. It was really exciting. And then came the day when all 50 states declared that February 14th was congenital heart defect awareness day.

[00:04:12] Then it went worldwide and lots of people were talking about Congenital Heart Defect Awareness Day, and then it became Congenital Heart Defect Awareness Week. And now it's Congenital Heart Defect Awareness Month. There are some other events that have taken place regularly, and I did want to draw your attention to one in particular.

[00:04:32] Many of you who are long-time listeners will remember when Rita Scoggins and her daughter Victoria Scoggins came on my podcast. They taught to us about Wear Purple for Congenital Heart Defect Awareness. Victoria has made this day special for years, and she talked about it on my podcast and she even wrote about it in The Heart of a Heart Warrior.

[00:04:57] So if you have not picked up that book, look for Victoria's essay in there and you'll learn a little bit more, but she always designates the second Friday in February as Wear Purple for Congenital Heart Defect Awareness and the reason she chose purple is because everybody associates red with acquired heart disease.

[00:05:22] And many of our heart warriors are children who have holes in their hearts and their lips will frequently look purple. Sometimes their fingernails will look a little bit purple. So she felt that purple was a good color to differentiate between congenital heart defects and acquired heart defects. This year on February 9th, 2024, it will be Wear Purple for Congenital Heart Defect Awareness Day. If you could take a picture of yourself in a purple shirt or a purple skirt or a purple sweater or whatever it is that you're wearing that is purple.

[00:06:02] Even if it's a purple hair ribbon, take a picture of it and put it on social media and help other people understand the significance of the number one birth defect around the globe, which is congenital heart defects.

Book Study & Book Sale

[00:06:19] Many of us do a lot of different things for Heart Month. Baby Hearts Press, my publishing company, has decided for the entire month of February, we will be offering a sale of 50 percent on My Brother Needs an Operation, The Heart of a Mother, and The Heart of a Father, as long as supplies last.

[00:06:39] We're really excited to offer this special so that people can get these classic books. and hopefully, they will help families in the CHD community and beyond. Check out our website, www.babyheartspress.com and you will see the information about the books that are on sale. 

[00:06:59] Another thing that I will be doing in Heart Month is I will be starting a Book Study for our newest book, The Heart of a Heart Warrior. Friends, I have done book studies in the past and they are so much fun. I invite authors from the book to come answer questions of the participants. We actually talk about the different essays that were written in the chapters that we're going over for that week.

[00:07:29] Many of you who are friends with me on Facebook know that in January 2024, I got COVID. Now that I'm a little bit older, it really hit me hard. I am five weeks out and I am still not a hundred percent, but I am doing my best. I wanted to start the book study the first week in February, but unfortunately, I haven't been well enough to do that

[00:07:52] so we're going to be waiting a week or two to do that. What I'm really excited about is that we're doing something a little different with the book study compared to when we did it for The Heart of a Mother or The Heart of a Father. We will be covering about a chapter a week, which isn't too much to read, but will still give us plenty to talk about.

[00:08:12] And then the final week of our four-week session will be a Jeopardy game. Many of you know that I used to be a teacher and you can take the teacher out of the classroom, but you can't take the classroom out of the teacher. I will be making a fun Jeopardy game that will test your knowledge of the book that we just discussed in the book study.

[00:08:35] And there will be prizes at the end. So you'll want to attend because it'll be so much fun. There is a small fee for coming to the book study. If you are a contributor to The Heart of a Heart Warrior, you can come for free. We want you to come because we want you to answer questions for us. If you are not an author, but you already have a copy of the book and you only want to come to the book studies to meet the authors and the editors and to enjoy the Jeopardy game at the end with the prizes. Then it will only cost you $35, which is less than $10 a session. So look for that on the Baby Heart's Press website.

[00:09:14] It'll be in the bookstore. If you don't have your own copy of The Heart of a Heart Warrior and you would like a copy of it for $50, I'll give you the ebook version and you'll have an autographed copy of the book as well. You'll be able to participate in the course with us, which should be so much fun. And like I said, it will culminate with a Jeopardy game where we'll actually see what you learned from Volume One of The Heart of a Heart Warrior.

[00:09:44] We'll start in February with Volume One, and we'll go for four weeks. And then in March, we will cover Volume Two. And in April, we will cover Volume Three. I'm really looking forward to this. 

[00:09:55] We have some contributors who have gone on with their writing aspirations and are doing even more. Come to the book studies, meet these people, hear their stories, and see what it takes to become an author for the next volume.

[00:10:11] We are already starting to gather essays for Volume Four, which is super exciting. 

Scribophile and new books

[00:10:17] If you are interested in writing for The Heart of a Mother or The Heart of a Father or The Heart of a Heart Warrior, we are starting to look at new editions of those books. We have a special group on Scribophile.

[00:10:33] Scribophile is a writing platform for authors and most of these people are not published authors. They're just everyday people who want to communicate through the written word and on Scribophile you can critique other people's work. You can have your work critiqued. It's a writing community and when you are writing, it's very easy to feel isolated but what you really need is that sense of comradeship and a sense of community.

[00:11:04] We have a special group called Heart to Heart. I'll put the link in the show notes. That's what we have going on for Heart Month right now. That's it for the news.

Segment 2

[00:11:13] Many of you may be wondering what the difference is between the Kickstarter edition of The Heart of a Heart Warrior and the one that you can find on Amazon. It was my goal as a publisher to provide a hardcover copy of the book to all of the contributors, but many of you know that the price of printing, the price of paper, the price of binding has really gone up so much in the last several years. That makes it even harder to produce a book than it was before.

[00:12:23] Because the cost of printing and binding and paper is so much higher than it used to be, I decided to do a Kickstarter. One of the main goals with the Kickstarter program was to provide books free of charge to nonprofits that provide bravery bags or care packages to families in the hospital because I thought this is the kind of book that families in the hospital really need to receive.

[00:12:50] I was so excited to partner with a number of nonprofits. And I hope to be talking to a lot of them soon on Heart to Heart with Anna. So be on the lookout for that. We were able to donate books to eight different nonprofit organizations that provide care packages to families

[00:13:11] in the hospital. We were also able to give every single contributor a copy of the book as a hardback for their contribution to the book. I also gave them a paperback copy of the book as well. But this was the first time in over 20 years of being a publisher that I was able to afford buying a hardcover copy.

[00:13:33] And that's because of the generosity of the Kickstarter patrons. So if you were a Kickstarter patron, thank you so much. I really appreciate it. What is unique about the Kickstarter book is that it contains all of the first three volumes of The Heart of a Heart Warrior. The preface is by Dr.

[00:13:57] Corrine Smorra, who was actually born with a congenital heart defect herself. And you'll be meeting her very soon when I start reading to you. It has all of the essays. To make it a little bit more easily consumable, we actually broke the book into three volumes. You will find three volumes of the book available on Amazon or in libraries. If you don't have it in your library, ask your librarian to get it.

[00:14:27] Usually if a library has people request a book, they will do their best to get it and the book is available to libraries through Ingram. You should be able to get it anywhere you buy books now because it is available on Ingram and on Amazon.

The making of an audiobook...

[00:14:41] When I was a little girl growing up in New Jersey, I used to listen to WABC radio and they used to have an advertisement for Recording for the Blind and Dyslexic. I remember thinking that someday I wanted to work with that organization because I loved books and I couldn't imagine being blind or dyslexic and not being able to read easily.

[00:15:09] When my children were young, my husband and I decided to homeschool them and as part of their homeschool curriculum, we performed some sort of community service each semester. One semester we decided to work at Recording for the Blind and Dyslexic in Austin, Texas. So we traveled to Austin and my children actually became directors. I was a director and also a reader for the program. So now to be reading my own book as an audiobook, this is a dream come true.

[00:15:44] So here we go. I'm super excited to present this very special book that was co-edited by Megan Tones and me.

The Heart of a Heart Warrior

[00:16:37] The Heart of a Heart Warrior I'm going to skip over the copyright page and the warning disclaimer. I'm also sadly going to skip over the three pages of Loving Supporters, but I do want to tell all of you how very much I appreciate all of you for making the dream come true for us to provide this book in care packages around the United States and so that all of the people who took the time to share these really inspirational stories could have a very special edition for their very own library. 

"I Am a Miracle Child" by Becca Atherton

[00:17:12] So we actually decided to start this book with a poem that was submitted by Becca Atherton.

[00:17:19] Becca Atherton was the very first person to submit any works to me for The Heart of a Heart Warrior and when Megan and I read her poem, 'I Am a Miracle Child,' we both felt this was the perfect way to open our book. 

'I Am a Miracle Child' by Becca Atherton. 

I am a miracle child struggling the first months of my life, given a 13 percent chance of survival to the age of five.

[00:17:51] Today I am 17. I am a miracle child. Life-saving battle scars adorn my body, changing my shirt. I see the bright pink scar running down my chest. Always a reminder of my yearning for life. I am a miracle child. Fear is part of me. I am afraid when my heart skips a beat. I fear being in the hospital alone. In pain, I cry at the very thought I fear dying.

[00:18:22] I am a miracle child. I know I am not like most valuing life. I celebrate the morning. I appreciate those who love me and know every day truly is a gift. I am a miracle child. Being a miracle child is. Frightening. Is celebrating, is accepting, is appreciating, is my life. I am a miracle child.

Dedication

[00:18:51] Dedication. Megan and I would like to dedicate this book to all the wonderful people who contributed to the book and whose legacy are the words and stories they have left behind so that we might better understand them. We especially lovingly dedicate this book in memory of Karen Klein McNulty, Julie Kerr, Becca Atherton, David Franco, and Travis Martin, contributors we lost before the book was published, and to all who loved them.

[00:19:21] We also dedicate this book to the entire congenital heart disease community. It is an honor to be part of this special group. I also dedicate this book to my own heart warrior, to my heart-healthy son, and to my husband, who is everything to me.

[00:19:37] That's by Anna M. Jaworski. I would like to dedicate this book to those who listened to me and helped save my life over the years. My mum and dad, who must have felt like they were raising an alien at times, my brothers, husband, and extended family, and of course, all the medical professionals. And that's by Megan Jane Tones.

Foreword

[00:19:58] Foreword. My name is Dr. Corinne Smorra. I am a licensed clinical social worker specializing in working with those impacted by congenital heart disease or CHD. I was born with truncus arteriosus. I have spent every day of my life as a CHD patient for the last several years working to help those who have been affected by this condition.

[00:20:22] As a counselor, I work to provide the support, understanding, and most appropriate psychosocial intervention for people born with heart disease, an invisible birth defect that affects them far beyond the confines of their hearts. My friend, Belén Blanton, who you will meet in this book, introduced me to Anna.

[00:20:42] She knew Anna Jaworski through her podcast, Heart to Heart with Anna, which has been running since 2013. Anna not only has a child with a CHD, but has also edited the first two books in this series, The Heart of a Mother and The Heart of a Father.  Anna, and I first "met" on the phone. 

[00:21:01] There was an electric charge between us as we shared our mutual passion of wanting to contribute to the benefit of the CHD community. Anna and Megan have spent the last four years working on this book of essays written by those who have been born with CHD. They've done an amazing job compiling and editing the authors' stories about their experiences and challenges and optimism about their lives.

[00:21:27] When I think about how to describe these stories, the one word that reverberates the most is resilience. As you read each piece, I can honestly say, no matter what the outcome or obstacle each heart warrior faces, the resilience they show will jump off that page and grab at your heartstrings. Kimberly Russell, who responds to someone who tells her, "Oh, it's too bad you did not have the experience of having a child" with, "Well, it is too bad you did not have the experience of adopting."

[00:21:58] I appreciate Megan Tones, who learned how to sew because she had difficulty getting clothes to complement her body alignment. Then there's the essay by Jeni Busta, who as a child was bullied ferociously. When you read her essay, you'll see how faith, love, and perseverance have allowed her to quell negativity, which might have consumed her.

[00:22:19] People pushing their physical limits beyond the expectations their doctor shared with them intrigued me. Reading about heart warriors achieving milestones and their successes made me happy. Lastly, you will read stories about those who inherently knew there was something going on with their health. They believed they needed to push further and keep digging for answers, challenging different doctors until they found a solution together.

[00:22:46] The reason I write the Foreword for this book is that psychosocial research on adults with CHD is approximately 10 years behind what we see for children who have CHD. This book will help provide some answers and support while the research can catch up. In the meantime, if CHD is impacting your life in some form, this book can serve as an immediate support for you or a loved one.

[00:23:11] The fact is, many adults with CHD encounter anxiety. And or depression, a book like this one can normalize the feelings as well as provide some confidence in oneself. I like to say to my clients facing uncertainty, it's smart to plan for obstacles, but necessary to hope and plan for the best as well. We do live each day with an underlying concern, but we want to make sure we grasp those opportunities for the future.

[00:23:41] That's by Dr. Corinne Smorra 
Chief Clinical Officer of the Heart and Mind Counseling LLC 
Adjunct Associate Professor, Western New Mexico University School of Social Work, Contributing Faculty, Walden University, Barbara Solomon School of Social Work

Preface

[00:24:00] Preface. Welcome to the book we wish somebody would have given us many years ago.

[00:24:06] Our dream with this book is to provide a resource to let others in the congenital heart defect, CHD community know they are not alone. Who are we? The editors are a parent of an adult with a CHD, Anna, and a heart warrior. Megan, we came to know each other thanks to Facebook. We have known each other since January 2015, but it feels as though we have always been part of each other's lives, although 8, 261 miles separate us, with me being in Temple, Texas.

[00:24:38] Being in Brisbane, Australia, living with CHDs in the 21st century is better than it was when most of the contributors to this book were born. When they were born, there was no internet. More babies were born every year than there were adults alive with CHDs and medicine was more of a trust-me-I'm-the-doctor type of practice rather than one based on family-centered care.

[00:25:05] My heart warrior was still a child and I didn't even know Megan when the idea for this book was conceived. While a handful of adults with CHDs wrote for my two other anthologies, The Heart of a Mother and The Heart of a Father, the idea of having a book entirely written by heart warriors was still a dream, especially since my wish was for my own child to be a contributor. It has taken us years to gather essays, work with the contributors, and refine our vision for the book, but it has finally happened. As scary as it is to be the parent of a child with a CHD or an adult with a CHD, these are miraculous times we live in. The diagnostic tests available, drugs and supportive devices such as implantable cardiac defibrillators, ICDs, left ventricular assist devices, LVADs, and even implantable loop recorders make the management of CHDs something that is less scary and more successful.

[00:26:07] They have refined the surgical procedures to help those born with CHDs over years, which now sometimes include the use of robotics, 3D printing, and even stem cells to help our heart warriors live their best lives. These types of technologies are game changers. It truly is an exciting time for us to be alive, to witness history in the making.

[00:26:30] That is what makes this book so valuable and so unique. Many of the people who have written for this book were some of the early pioneers. These children had parents who refused to give up on them and who decided that a potential future was better than no future at all. Parents gave permission to surgeons, cardiologists, and other medical professionals to do what had to be done in order to save their children's lives.

[00:26:56] They put their trust in the medical system, and the field of pediatric cardiology blossomed. Today, there are often multiple procedures available to help medical teams treat their patients, and there are enough results from previous cases to give them an idea of the potential outcome. Sadly, there is a downside to being a pioneer.

[00:27:17] Bullying, confusion, misinformation, and uncertainty were part of everyday life for many of our heart warriors and their families. Many heart warriors were told they were fixed after their first surgery, and for some, they would lead happy, healthy lives until an unexpected event would land them in the emergency room.

[00:27:38] Depression, anxiety, and post-traumatic stress are all conditions that many heart warriors and their family members experience because of the circumstances involved with such uncertain futures. Myriad hospitalizations and procedures and even conflicting solutions from professionals, depending on when and where care was administered, contributed to challenges with mental health.

[00:28:03] This book is needed because of the shared experiences so many heart warriors understand. People need to know they are not crazy. They are not misinformed and they are not alone. This book is for all the people in the CHD community who believe that their lives or the lives of their children, siblings, grandchildren, or friends matter.

[00:28:25] They had lives worth saving, despite the trials and tribulations. Here is a book for anyone who has dealt with a broken heart, but who chose to look at the whole person instead of just a damaged organ. This book is for the believers, the dreamers, and the fighters. This book is for all heart warriors and their families.

[00:28:45] Thank you for the sacrifices you have made. May the stories in this book make your hearts a little lighter, and may you realize, if you didn't know this already, that you belong to a very special subset of the world. Anna Marie Jaworski.

Acknowledgements

[00:29:01] Acknowledgements. This publication took over four years to go from concept to actual book. First, we need to acknowledge and thank every person who contributed to this book. We wrote, edited, and revised essays repeatedly. We have grown closer to these amazing people and their stories inspire us.

[00:29:19] Since you can easily see the names of each of the contributors in the table of contents and throughout the book, we won't list each of them here too, however, I would like to acknowledge a few family members who helped us with contributions, especially after a heart warrior passed away.

[00:29:35] Special thanks to Chris Atherton, Roseanne Franco, Roseanne Bishop, Mary Kay Klein, Arlyn Kerr, and Dawn Martin. We really appreciate you helping us to make sure the contributions were the legacy your loved ones deserved. When talking to some friends about who could write the foreword to this book, Belén Blanton immediately knew who would be perfect.

[00:29:56] Thank you, Belén, for introducing me to Dr. Corinne Smorra. Thank you, Dr. Smorra for helping others understand the purpose and significance of this book. I would like to thank members of Facebook who responded to polls. We would like to thank our beta readers, especially Joe Flowers, Lowry Smith, Beth Greenaway, Julie Valladares, Helen Simpson, Kimmie Salvage, Sasha Elizabeth O'Donnell and her daughter Odette, Daphne Davis-Patrick, Deena Barber, Sheri Turner, and Cora and Valerie Guerin. Feedback from the congenital heart defect community is so important. Thank you especially to Jane Hunt, Debbie Gilmore, Rita Scoggins, Amy M. Lee, and Jenny Muscatell. All of you are always there with helpful advice and an encouraging word.

[00:30:41] There are always people behind the scenes who are instrumental. Brenda Vignaroli was our webmaster extraordinaire. She did so much to help me in the early stages, and until Lauren Elizabeth took the reins from her. Lauren did a wonderful job of revamping the website just in time for the launch of Baby Hearts Press as a hybrid publisher.

[00:31:01] Janet Scherer and her daughter, Stephanie, have also provided encouragement and support. Thanks to Monica Mossey, the Spreadsheet Queen, we had a list of people who wanted to be part of the book and their contact information. Many of you know this book is the third in the Heart of a ... Series. I'm indebted to Lisa Colvil for working with me for hours to come up with an agreed-upon design.

[00:31:22] There was no photo or art that seemed perfectly able to depict a heart warrior. So Lisa and I decided that putting all the words commonly used by the CHD community in a heart was the way to go. Omer Farooq took our idea and gave it life. This is our special Kickstarter-only cover. Our goal with this book was to have one place where adult heart warriors could share important aspects of their lives with the world to stand as a testament to the resilience of the human body and mind.

[00:31:52] The pages that follow are not stories in their rawest form. Instead, Megan Tones and I worked with each author to help them craft their stories. Amy M. Le even added a helping hand in the developmental editing phase and gave several contributors her helpful insight. I know that other family members, friends, and writing buddies also helped in this process.

[00:32:13] I'm sorry not to have the names of all these people to give credit where credit is due, but if you're reading this and you were one of those helpers, thank you. Megan Tones met with me regularly to edit, work on formatting the book, help with communicating with our contributors, and so much more.

[00:32:28] Having a co-editor who actually was a heart warrior was something I felt was necessary to give this book the tone it needed. I knew Megan understood each and every story with every fiber of her being. As a heart mom, I could appreciate the stories, but Megan lived many of those stories, thoughts, and experiences.

[00:32:47] Also helping with the editing, formatting, and design work with the book was heart warrior and contributor Lauren Elizabeth. Thank you for helping us finally get the advanced reader copies of the book ready for distribution and getting the book ready for publication. Our husbands were instrumental because they sacrificed many hours that could have been spent with them in order to let us work on this book.

[00:33:09] Frank Jaworski and Matthew Tones have never wavered in their support and love for us during this book project. Frank also always fed me and kept me hydrated. Thank you to both of our significant others for keeping us sane during the tenure of this project. Although it may seem unconventional, I think we also need to give a thank you to our furry children, who were literally by our sides during so much of the process.

[00:33:33] My miniature Schnauzer Missy often insisted on sitting on my lap or on my feet when I first started this book. After she passed away, Buck and Chloe were almost always on a pillow by my desk, on my feet, or somewhere in my office while I worked. It is because of them I would get up to take breaks and I never felt lonely while working on the book.

[00:33:52] Megan writes, Belle often slept on the top of the lounge chair behind me, snoring Pandora curled up in the sun. Together, they were my office ladies, although they were often joined by their brothers, Kratos and Brutus. Sadly, Brutus and Belle are no longer with me.

[00:34:10] However, their passing enabled us to welcome Coco and Bella. Alas, Kratos now has three younger sisters and often looks a bit frazzled as he curls up on my lap. Finally, I believe there were many angels on our shoulders while we worked on this book, and I would like to acknowledge that. Sadly, we have lost too many friends in the CHD community far sooner than we would have liked.

[00:34:31] I need to acknowledge my mother, who also passed away in 2018. In her last days, she dealt with A-Fib, and I learned even more about treatments that many of our heart warriors must endure, but it's thanks to my mother's Texas-sized heart that I learned how to love others from a young age. If I had to sum up this book in a word, that's the word I'd choose. 

Introduction

[00:34:53] The Introduction is written by Megan Tones. In the year 2000, I was 17 and on the cusp of adulthood as my classmates bought cars, went on dates and planned their gap years or daydreamed about sharing houses and university, I just looked forward to the next day when I could lie on the lounge and watch music videos.

[00:35:14] Even though I dropped every class I could without affecting my capacity to graduate, I still nodded off in class and had trouble focusing. I just managed to pass even though I had top marks in primary school and junior high. Aware that I had a heart condition, the teachers gave me a pass. My English teacher even told me I could go to sleep while the rest of the class watched Macbeth.

[00:35:36] Unbeknownst to me and everyone else, I was living with untreated heart failure. I didn't know anybody else with a congenital heart defect, CHD, and my only involvement in the CHD world was when I went to my pediatric cardiologist every two years, who always told my parents and me I was fine. At my graduation, the high school gave out several awards.

[00:35:59] The class of 2000 sat in the gymnasium with their families as they announced various achievements. Top marks for course subjects like English, Maths, and Sciences, and several sports and community awards. Then came Achiever of the Year. I walked up to the bright stage with the duxes and athletes, where a local member of parliament smiled and handed me a certificate with both hands.

[00:36:24] She whispered, "I understand it takes over an hour for you to get to school." Perplexed, I nodded. As the speeches went on, I wondered why I had received the award. It had been a rough year for my family with several personal problems which affected my studies to where I received special consideration. My family had moved two years ago and I wanted to stay at my old school, even if it meant commuting across town by train.

[00:36:51] Still, I knew of several other students facing personal difficulties and a long commute. Why was I singled out? I felt self-conscious standing up there holding an award that I received simply for staying in school. My cardiology team finally discovered my heart failure in my mid-twenties, and I found out that not only was I not cured, but that I needed another surgery.

[00:37:16] This crisis prompted me to google CHD, and I found what I had sorely been missing in life, education about CHD and a supportive community.

[00:37:27] Words can't express how validating and empowering it was to discover that world. I met many wonderful people from across the globe who'd had similar experiences to me. All of them helped me so much just by listening and sharing. I have stayed in contact with the community since then, and I feel like it would take an entire lifetime to pay it forward, but I do what I can.

[00:37:51] When Anna approached me about this book in 2018, I had already known her for a few years. In 2015, I was a guest on her podcast, and before long, I started working as a scriptwriter for Heart to Heart with Anna. We would get together with our dogs on Skype or a Facebook call and brainstorm together to write captivating bios and questions for her many guests over the years.

[00:38:14] I knew she had edited two books written by heart mothers and heart fathers, so I was very excited when she raised the idea of editing a book written by adults with CHD. I saw a wonderful opportunity to create a resource. I thought back to when I was an exhausted teenager wondering how on earth I would be an adult and what a difference a book like this might have made.

[00:38:36] As a person with CHD myself, words like hope and inspiration make me cringe a little as I think back to the award I received at my graduation and how it made me feel. It was like people telling me I was brave and strong for going through this or that procedure when I didn't feel like I was doing anything other than what I had to do.

[00:38:56] However, I truly believe that this book conveys a sense of hope and inspiration to people living with CHD and their families. Not because the authors have CHD and get up and live their lives like everyone else, but because of the creativity and tenacity they display to be heard, prove others wrong and do the best they can, even if sometimes they had to go about life a slightly different way than they planned.

[00:39:21] I hope you will read these diverse essays and find yourself. and your loved ones represented and maybe even imagine a future you didn't think would be possible. Anna and I organized the book into 10 different chapters, each representing a different theme. You may start from the beginning or read whichever chapters you like the sound of.

[00:39:41] There's also an index in the back to help you find topics of interest to you. When I write, the text will be in italics to differentiate my writing from Anna's. You'll notice that my spelling may be a bit different from Anna's since she's from Texas and I'm from a little place called Brisbane, Australia.

[00:39:58] We felt it was important that we, and all the contributors, shared their words and spelling as they would in their homeland. Megan Tones

Survival

[00:40:08] Survival. In the late 1990s, a popular reality television program, Survivor, took the world by storm. The first of these programs, called Expedition Robinson, was a Swedish television show. The format for the program involved a group of contestants who gathered, usually in a remote exotic location, to compete for a cash prize.

[00:40:31] People were ousted one by one until there was a sole survivor. It was a wildly popular program around the world and especially in the United States in 2000. Survivor, for our heart warriors, isn't so entertaining. Survival often means enduring open-heart surgery. It frequently means besting the complications that often accompany having one's chest opened while surgeons perform life-saving procedures.

[00:40:58] Survival means having gone through so many diagnostic tests that beads of courage could stretch from one city to the next. Survival often comes at a price, but it also comes with bragging rights. In the four chapters that open this book, you'll read about survival in its rawest form. You'll meet heart warriors and read about what growing up meant for them. 

[00:41:22] You'll learn about how their heart defect does or does not define them. You might be amazed at how some heart warriors are active with their CHDs and you'll discover clever ways they've learned how to navigate their lives to focus on their successes instead of their challenges.

[00:41:38] Finally, you'll learn about heart warriors around the globe and you'll witness how CHDs affect people of every nation, every socioeconomic status, and every race in very similar ways. The fact the contributors to these essays have survived is remarkable in and of itself. It is because they survived and live to tell about it that we even have this book at all.

Conclusion

[00:42:02] And that, my friends, concludes the front matter of the book. The next time I do a reading, it will be from Chapter One. I hope you enjoyed the front matter and learning a little bit about how this book came to be put together. If you want to read more, check out the Baby Hearts Press website, the link will be in the show notes, but it's babyheartspress.

[00:42:24] com or you can go to Amazon or wherever you typically get books and look for The Heart of a Heart Warrior Jaworski. That's the fastest way to make it pop up.

[00:42:35] I'm excited to be sharing this book with all of you. I was an author before I was a podcaster and I've been so pleased to see how many people around the globe have been helped by the books Baby Hearts Press has put together and by the podcast. 

[00:42:50] Please visit Baby Hearts Press during Heart Month, which is February 2024, for special sales. And remember my friends, you are not alone. 

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