Heart Warrior Transformations: From Challenges to Creative Triumphs

Have you ever wondered how living with a congenital heart defect can shape one's life journey? This week, we’re diving into the remarkable stories of heart warriors, those extraordinary individuals who navigate life with congenital heart defects. I'm Anna Jaworski, and in this episode, we explore the powerful metaphor of transformation, akin to a caterpillar becoming a butterfly, as we discuss my latest book, "Heart of a Heart Warrior Volume Three: Transformation." We start off with an evocative foreword by Paula M. Miller, who shares her moving journey of resilience and the life-changing support she found through the Adult Congenital Heart Association.

Prepare to be moved by the creative spirit of the CHD community. My co-editor, Megan Tones, and I highlight the diverse artistic expressions, from vivid visual artworks to heartfelt poetry and fiction. You’ll hear about the stunning ferret drawing by Julie Kerr and the poignant poems of Lisa Colvil and Becca Atherton. We honor not only the living artists but also those who have passed away, celebrating their enduring legacy through their art. Organizations like Hearts Unite the Globe play a pivotal role in supporting these heart warriors, amplifying their voices and their art.

The episode also touches on the critical role of parental advocacy and support. I share my personal journey navigating life with a child born with hypoplastic left heart syndrome (HLHS), which led me to write books and help form the Milagros support group. Inspired by these experiences, I continue to work on new volumes that capture the resilience and spirit of heart warriors, with Megan by my side as co-editor. Join us as we celebrate these empowering stories, remind everyone that they are not alone, and look forward to connecting with our listeners next week.

To get a copy of The Heart of a Heart Warrior: Volume 3 Transformation, visit the Baby Hearts Press website at: https://www.babyheartspress.com

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Thank you to everyone who has helped HUG in creating our podcasts and other resources. Visit https;//www.heartsunitetheglobe.com to donate or join us!

HeartWorks: We Build Hearts
HeartWorks empowers the CHD community by advancing research and finding cures for heart defects.

Chapters

• 0:00 THoaHW Chapter 8
• 14:35 Segment 2
• 19:15 Segment 3

Transcript

Speaker 1: 0:53

The transformation a caterpillar has to go through in order to become a butterfly is not unlike the transformation our heart warriors must endure to live beyond their congenital heart defect. Butterfly transformation is one of the most iconic transformations in nature. But what about the transformations our heart warriors go through?

Speaker 2: 1:18

Welcome to Heart to Heart with Anna.

Speaker 1: 1:21

I am Anna Jaworski and the mother of an adult with a single ventricle heart. That's the reason I am the host of your program. I am so excited to share something very special with you, my friends, during the month of July 2024. I decided to take this month, which is my birthday month to celebrate my latest book. It's called the Heart of a Heart Warrior Volume 3, transformation, and I'm so excited to share this with all of you.

Speaker 2: 1:50

It's like a big birthday gift to me, because this is a book that I would have loved to have received when I was told my baby was born with a heart defect.

Speaker 1: 2:01

This is the book that is written by only adults with congenital heart defects, and they are amazing. It has been so much fun to talk with these people, to help them with their essays and to put together a book that is very special. So today I will start by reading the foreword and then skipping to chapter eight, where my co-editor, megan Tones, and I will be taking turns reading some of the pieces. Now, chapter eight is really unusual because it's actually works of art, so Megan and I will do our best to describe the works of art that are visual. I suggest you go ahead and run over to babyheartspresscom to pick up a copy of this book if you want to see those beautiful pieces of art. Now we also do have a little bit of poetry by Lisa Colville, and Megan Tones wrote an amazing piece of fiction that was published in another magazine and we were granted permission to reprint it. Next week we'll finish out chapter eight, and then we'll be reading from chapter nine for a couple of weeks, and then we'll finish July by reading the final chapter and the conclusion of this amazing book. The reason it starts with chapter eight, by the way, is that this is the third book in a series and, for those of you who are loyal listeners, you know that Megan and I started reading book one and then we continued reading book two in hot month in February of 2024. And then we took a little break for a while and I just did interviews like I normally do. But I thought for my birthday month I want to do something special. That's why I will be bringing you the heart of a heart warrior. So here we go. I'm not going to read all of the front matter to you, but I figured I would read the foreword, because it's written by a very dear friend of mine, somebody I really respect and love. Foreword by Paula M Miller, msn. Rn.

Speaker 1: 4:09

Born in 1951, with Tetralogy of Fallot, in an age where open-heart surgery didn't exist, I grew up thinking I was the only little girl, and later woman, who had been through what I had been through. I eventually had surgery to repair my defects and went on to live my life. I never talked about my heart, I hid my scars and I ignored abnormal rhythm symptoms. I didn't know anyone else who was like me. Although I had met other kids with congenital heart defects CHDs during hospitalizations for my childhood surgery, those connections didn't last, fast forward to 1998 or 1999, and, like so many adults living with congenital heart disease, chd. I was looking for someone like me. I knew I couldn't be the only one alive who was born with a heart defect. I also knew I couldn't be the only person with CHD who was having health issues, even though I thought and acted like there was nothing physically wrong with me. There had to be someone out there who understood me.

Speaker 1: 5:09

It was the beginning of the internet and AOL chat rooms. I ventured into one of them that was titled something like adult congenital heart disease. This was exactly what I was looking for someone like me. What I actually found was the Adult Congenital Heart Association, the ACHA. In fact, two of the young people I chatted with were founders Karen Klein-McNulty and Anthony Cardaro Jr. What a vision they had and what a turn my life was about to take. I have never looked back. The trajectory of my life and my health changed for the better. That day Fast forward, 22 years and ACHA continues to play a major role in my life.

Speaker 1: 5:51

I am now giving back in a way I never thought possible when the connection began. I have served as a volunteer, a member and an officer of the board of directors in various staff roles. Today, as senior education manager, I work tirelessly every day to make sure that everyone living with CHD, child and adult alike, thrives through the lifespan and lives a life unaffected by congenital heart disease. That is my passion. Along the way, I have met and I have grieved many extraordinary, talented, creative and courageous people Adults living with CHD, parents of children and adults with CHD, partners and siblings of adults with CHD, friends and many others who love those of us living with CHD. One of these gifted people is Anna Jaworski, who has given us all an insight into the lives of others like us through her insightful podcasts and books. For this I am grateful. Thank you, anna, and all of those who have told their personal stories to you in the past 10 years on Heart to Heart with Anna. Thank you for giving all of us who listen to your podcasts and read your books insight into what it's like being born with, growing up with, struggling with and thriving with congenital heart disease. It's been an honor to meet them and, in some cases, to meet them again in the transformation section of the Heart of a Heart Warrior. Their stories exemplify the creativity and reliance of those living with congenital heart disease.

Speaker 1: 7:15

Paula M Miller, msnrn, senior Education Manager. Adult Congenital Heart Association. Paula Miller, senior Education Manager of the Adult Congenital Heart Association, acha, has been involved with ACHA since 2000. She first served as a conference volunteer and later was on the Board of Directors, a position she held for six years. She was vice chair of the board from 2005 to 2007. Paula received a BS in nursing from the University of Tennessee Health Science Center in 1973 and an MS in nursing from the University of Alabama at Birmingham in 1977. In her career she has worked as a pediatric nurse practitioner, a medical legal consultant, a nursing professor and a clinical research coordinator. As an adult with Tetralogy of Fallot, working with ACHD patients and families is her passion. Thanks again, paula, for doing that beautiful foreword. It made me feel so special to reach out to Paula and for her to immediately say she was interested in writing for the book.

Speaker 1: 8:19

Now here's the beginning of the meat of the book Transformation. Children often love to watch fuzzy caterpillars transform into beautiful butterflies. Some parents and teachers even buy butterfly kits to allow children to observe the life cycle of a butterfly up close. They see how the caterpillars grow and develop into beautiful butterflies and they also learn, if they're not careful, that without proper care the caterpillars will die before achieving the butterfly state. The transformation a caterpillar has to go through in order to become a butterfly is not unlike the transformation our heart warriors must endure to live beyond their congenital heart defect. Butterfly transformation is one of the most iconic transformations in nature. But what about the transformations our heart warriors go through In this book?

Speaker 1: 9:10

You'll have a chance to read three different chapters in this section. The first chapter is titled Works of Art, and the chapter is abundant with poetry, art and even some fiction. These works show the reader how having a CHD doesn't limit the imagination of our heart warriors. Just the opposite. Many in our community have extremely active imaginations and are able to capture moments in time with the stroke of a pen or a brush, or perhaps they capture a scene with just the right words or create something magical simply with the beauty of their mind and descriptions that allow us to join them in their creation. The second chapter honors our heart warrior authors. In this chapter, you will have a chance to read excerpts from some of their books and learn a little bit more about them too. While 80% of people want to write a book, less than 2% of people actually publish.

Speaker 1: 10:02

Our heart warriors beat the odds to survive and endure their CHDs. In this chapter, you'll witness how exceptional these heart warriors are, since once again, they have beaten the odds to become published authors. The final chapter is entitled Beyond my CHD, and it's the chapter that helps the reader to understand how heart defects may afflict our heart warriors. But they don't have to prevent our heart warriors from being the best versions of themselves. So many heart warriors have used their medical trauma as a springboard to metamorphose into exceptional individuals. Post-traumatic growth is the psychological term for these transformations. Those of us who believe in a higher being may feel they are more akin to miracles. Regardless what you call them, they are just as beautiful as the butterflies that fill our gardens in springtime.

Speaker 1: 10:52

Chapter 8. Works of Art. When I first put together the book the Heart of a Father, I reached out to some men whose wives wrote for the heart of a mother, partly because many of the contributors became close friends of mine over time and because I thought readers might enjoy reading more about the families they met in the heart of a mother. Since I published the father's book ten years later, readers saw how some of the heart warriors had grown up. 10 years later, readers saw how some of the Heart Warriors had grown up, it seemed logical that when I was finally putting together this book, I would reach out to those core families again. I knew that my devoted readers would want to know what happened to some of the Heart Warriors they had read about in a book published over 20 years earlier. Baby Hearts Press has actually been an important part of some families' legacies, and that is something we never could have guessed would happen when we put together our first books. I felt a sense of loss when I realized that two of the women I felt sure would have wanted to contribute to this new book had passed away. I mentioned as much to both of their mothers, and the mothers replied with copies of art their daughters had made. Therefore, this anthology has a special chapter highlighting art of our heart warriors.

Speaker 1: 12:03

Not all of the contributors are deceased, but Karen Klein and Julie Kerr could be part of this book thanks to their mothers, and I'm thrilled about that. I'm sure everyone will enjoy Julie's cute ferret and her essay, and Karen's artwork too. My co-editor, megan Tones, has written a piece called the Overworld, previously published in Masks, which I'm sure you'll all want to read. My dear friend Lisa Colville has included two of her poems, light of Love and Falling Apart, which I'm certain other CHDRs will relate to and which she first read on the Heart to Heart with Anna podcast. Becca Atherton sent me heartfelt poems she wrote before she passed away. Because two of her poems dealt with facing her mortality, we thought it was more appropriate to include her poems in the Facing my Mortality chapter, which you'll find in Volume 2 of this series. Megan and I also felt that Becca Atherton's poem I Am a Miracle Child really set the stage for the opening of the series. Therefore, we put the poem just before the dedication in Volume 1 of the series.

Speaker 4: 13:10

Heart to Heart with Anna is a presentation of Hearts Unite the Globe and is part of the Hug Podcast Network. Hearts Unite the Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community to uplift, empower and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at wwwcongenitalheartdefectscom for information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors and much, much more.

Speaker 1: 13:45

Embark on a heartwarming odyssey with Baby Heart's Pressure Gateway to uplifting stories for the CHD community.

Speaker 2: 13:52

Introducing the Heart of a Heart Warrior book series inspiring those born with heart defects and their loved ones.

Speaker 1: 14:00

Discover the heart of a mother, the heart of a father and my brother needs an operation. Books celebrating strength, love and familial support.

Speaker 2: 14:08

Visit babyheartspresscom and be part of our loving community, uplifting hearts one story at a time.

Speaker 4: 14:18

You are listening to Heart to Heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Jaworski at Anna at hearttoheartwithannacom. That's Anna at hearttoheartwithannacom. Now back to Heart to Heart with Anna.

Speaker 1: 14:36

Now my co-editor, megan Tenz, and I will take turns reading from Chapter 8, works of Art, and Megan will start with the first piece of artwork by Julie Kerr Julie applied a pointillism technique to this ferret's drawing for a high school art class assignment assignment.

Speaker 3: 14:55

The picture is a full-page image showing two ferrets, one nuzzling the other, and it's a black and white image In small print. At the bottom, Julie has signed her artwork. Julie was a mathematician who died at age 35. She got her first ferret at age 14 as a reward for undergoing two open heart surgeries the previous year. She and her husband had 12 ferrets over the years, up to six at any one time. Julie's other interests were miniatures, vegan cooking, cello, community activism and Esperanto.

Speaker 1: 15:40

Light of Love by Lisa Colville. All beautiful things are what the soul holds. In darkness, strength arises. The sky fills with hope as a ray of light hits our hearts. Always smile, for faith is the light of love. Always smile, for faith is the light of love. Recognize the wonder of blessings and never give up. The light of love will defeat the battles you face, for with every struggle the end spells victory, for within us lives the light of love.

Speaker 1: 16:13

Lisa Dang Colville was born in Reddy, pennsylvania, and raised in Garden Grove, california. She was born with ventricular septal defect, vsd, patent ductus arteriosus, pda, with pulmonic stenosis and double outlet, right ventricle or DORV. She grew up loving reading and writing for fun. In 2019, lisa became an author with her first book, through the Beauty of Grace, I Will. She met the HART community online in 2019 and 2020 and began her CHD journey. Lisa and her husband are parents to Serenity and Sean. Lisa's family also has a dog named Captain Morgan. The family moved into their first house in 2020. Lisa was born to Vietnamese refugees. She volunteers with the HART community collection and HART Hearts Unite the Globe.

Speaker 3: 17:01

Art by Karen Klein. In addition to her work for Adult Congenital Heart Association, acha, karen loved to paint. Seashells were one of her favorite subjects. Her parents, mary Kay and Ted Quine, donated this seashell painting to the ACHA office. In this photo you can see Mary Kay and Ted flanking their daughter's artwork. The image is a full-page image showing a photograph of Karen's artwork, with her parents standing either side. Karen was a co-founder and first president of the Adult Congenital Heart Association, acha, which was incorporated in 1998. Karen was born with truncus arteriosus type 3 with an absent right pulmonary artery. Karen never had surgery for her CHD. In 2001, she married James McNulty, who had also been very involved with the ACHA, since he was born with a single ventricle heart. Sadly, karen Klein McNulty died unexpectedly on August 31st 2005. Her husband, james, also left us on May 10th 2022.

Speaker 1: 18:25

Falling Apart. By Lisa Colville. In the dark, when you are lost, alone, in the moments you don't know if tomorrow is worth it. Life is never in one scene. Always moving is worth it. Life is never in one scene. Always moving, always changing space and time, falling apart. The trials are too strong. Don't know where to go, falling apart only to be lifted up and comforted by the love of the Lord. Lisa Dane Colville has been very busy writing in 2022. She published two additional devotionals the Hope of a Heart Warrior and Whispers of Grace, fall Through Winter Devotional. She also started her Stardust series, publishing two books so far. Lisa Dane Colville's books are available for purchase on Amazoncom.

Speaker 1: 19:16

This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. The opinions expressed in the podcast are not those of Hearts Unite the Globe, but of the hosts and guests, and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement. Or bereavement Home Tonight Forever by the Baby Blue Sound Collective. I think what I love so much about this CD is that some of the songs were inspired by the patients.

Speaker 4: 19:52

Many listeners will understand many of the different songs and what they've been inspired about. Our new album will be available on iTunes, Amazoncom, Spotify.

Speaker 1: 20:02

I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects.

Speaker 2: 20:08

Enjoy the music.

Speaker 1: 20:09

Home Tonight, forever Friends. I hope you enjoyed listening to Megan Tones and me reading from the Heart of a Heart Warrior, volume 3, transformation. We'll be reading more for the entire month of July, but in this last segment I just wanted to talk a little bit about the book and about Baby Hearts Press, because maybe not everybody knows about the publishing company or about the anthologies that we're working on. Many years ago I started Baby Hearts Press as a means to help other families like my own.

Speaker 1: 20:45

In 1996, when I first started the publishing company, there were very few resources for families like mine. We had a baby who was born with a serious congenital heart defect. It was really scary when I tried to find information about her diagnosis, which was hypoplastic left heart syndrome. Almost everything I found was dismal. The books that I did find that talked about babies with HLHS. None of the babies survived infancy and I knew that wasn't always the case because I had met a two-year-old who was post-fontan and was doing great and in fact I have been in touch with that young man's mother and he's still going strong, which is really amazing because now he's over 30 years old. But back in 1996, there was almost nothing. I did find a little pamphlet put out by the American Heart Association. The very last part of the book talked about life-sided heart defects and it simply said that babies with this condition died in infancy. And I knew that wasn't true. So I actually put together my very first book called Hypoplastic Left Heart Syndrome a Handbook for Parents Hypoplastic Left Heart Syndrome a handbook for parents. And that book was my story and all the information that I had gathered about hypoplastic left heart syndrome.

Speaker 1: 22:05

At that time I was so afraid I would miss a sign or symptom or that when I was very stressed I wouldn't remember something that was important. So I wrote the book and it's the book that I carried with me everywhere to my appointments to just help keep me straight with what my child had been born with. It was so alien to me that I felt like I needed to read and reread it. Writing it was helpful as well. It was very therapeutic for me and it gave me maybe a false sense of control. But writing the book and putting that out and learning how to be a publisher, those were things I could control. I couldn't control that my child was born with that condition, but I could control trying to get information for myself and spread that information out to others who needed it.

Speaker 1: 22:59

Before I started my children's book, I actually got online. It was a big deal and it's funny that Paula mentioned that earlier in the reading of the book today. She talked about meeting Karen Klein-McNulty and Anthony Cordaro Jr. And it's funny because I was online in the late 1990s as well, but I was searching for information about hypoplastic left heart syndrome. So I got dial-up internet in the late 1990s and then I started to meet more and more people with children with congenital heart defects. At this point I hadn't really met any adults, but I had met other parents and I also met a parent face-to-face in Temple Texas. She had a child with hypoplastic right heart syndrome.

Speaker 1: 23:48

I had a child with hypoplastic left heart syndrome and we actually helped to found the support group called Milagros in Temple Texas. Once a month she and I would ride together to Austin to attend a support group called Milagros in Temple Texas. Once a month she and I would ride together to Austin to attend a support group meeting and we would talk about different things that we had learned or people we had talked to in the CHD community and, of course, we were also meeting people face-to-face at the support group that we started. We would stop at Arby's on the way home. She always had to have horsey sauce with her sandwich, which made me laugh, and we had a great time.

Speaker 1: 24:23

And it was Jane who told me Anna, you need to put together another book. We keep telling the same stories over and over. These are stories the whole world needs to know about. And I said, okay, I had about 12 stories in mind that I planned on telling in the book, but before I could even start putting pen to paper, jane went on our listserv, which was another type of support group that we had come to rely on on the internet, and she said hey, anna's going to write a book. Who's interested in participating? And the next thing I knew, a hundred women told me that they wanted to write for the book. It was so humbling and touching and has been probably one of the most rewarding things of my life, because here I am years later. I am still friends with so many of the women that I worked with.

Speaker 1: 25:13

It took me three years to put the book together and then we published it. It was called the Heart of a Mother and I have never looked back. We put together the Heart of a Mother. Ten years later we put together the Heart of a Father. And now here we are with the Heart of a Heart Warrior.

Speaker 1: 25:31

This series is so vitally important to me. There was nothing like this for the heart defect community. Mostly there were medical journals that had articles. It was very impersonal. There wasn't anything showing the spirit, the resilience, the drive that parents had to help their children survive and the will to survive that our babies had to overcome unbelievable odds. The deck was really stacked against our children and yet here they were, beating the odds time and again, coming out so inspiring, so inspiring. My daughter Hope has changed me in so many different ways, and introducing me to the CHD community and helping me to appreciate the beauty of life is something I'll never take for granted.

Speaker 1: 26:29

So for those of you who are listening, if you've never read the Heart of a Mother or the Heart of a Father or the Heart of a Heart Warrior, please ask your librarian to order a copy of these books. They're available from Amazon. They're available on my website, babyheartspresscom. These books tell the stories of families you may know, and if you don't know them personally, you probably know somebody like them. In fact, these stories may reflect your own story in living with congenital heart disease. So that's where the ideas for the books came from and that's how Baby Hearts Press has hung around for the last couple of decades in service to the congenital heart defect community. Baby Hearts Press is the biggest organizational donor to Hearts Unite the Globe, the nonprofit organization that pays for this podcast and also pays for a website that has tons of free information for people living with congenital heart disease. I hope that you will support us and I hope that you will enjoy the stories. We are getting ready to start working on a fourth book and Megan has agreed to be my co-editor again.

Speaker 2: 27:49

I'm so looking forward to meeting some new heart warriors and maybe twisting the arms of some of my old friends to write for the new book because the world needs these stories and I feel privileged and honored to be the person who helps bring these stories out to the universe. I will talk to you next week. Until then, my friends, remember you are not alone.

Speaker 4: 28:16

Thank you again for joining us this week. We hope you have become inspired and empowered to become an advocate for the congenital heart community. Heart to Heart with Anna, with your host, anna Jaworski, can be heard at any time, wherever you get your podcasts. A new episode is released every Tuesday from noon Eastern time.