Today we’d like to introduce you to Anna Jaworski.
Alright, so thank you so much for sharing your story and insight with our readers. To kick things off, can you tell us a bit about how you got started?
I always dreamed of becoming an author, but I always fancied myself the next Laura Ingalls Wilder or Louisa May Alcott. I never thought I would write books for a community I didn’t even know existed!
My second son was born with a congenital heart defect that almost claimed his life. Despite multiple visits to the hospital, they assured us he was fine until they loaded us into an ambulance and we traveled two hours on I-35 to a hospital in San Antonio where Alex would have life-saving open-heart surgery. That experience changed my life.
When we came home after Alex’s first open-heart surgery, I wrote a letter to the editor of Critical Care Nurse, a journal my husband subscribed to. They featured the article, and I earned my first paycheck as a writer. I wasn’t a nurse, but I was passionate about helping families like mine, families whose children had the number one birth defect.
Instead of writing a sweet book for children, as I always dreamed I would, my first book was a nonfiction, self-help book. “Hypoplastic Left Heart Syndrome: A Handbook for Parents” is the book I wanted to read after receiving my son’s potentially fatal diagnosis. Twenty-seven years ago, there were very few resources and the one brochure the American Heart Association distributed that listed my son’s heart defect stated that all babies with HLHS died in infancy. I had met a two-year-old child at the hospital and he was my inspiration. I knew that not ALL children with HLHS died in infancy thanks to Joshua, and I felt other families needed to have hope that their children could make it.
I started Baby Hearts Press, my publishing company after no traditional publisher wanted my book. My husband and I believed that if we helped even only one other family like ours, it would be worth whatever expense we incurred. Library Journal reviewed the book twice and people all over the world have bought it.
I have also written a children’s book, My Brother Needs an Operation — the book I wish would have been available for my older son, Joey when his brother had to have 2 open-heart surgeries within the first year of his life. The Heart of a Mother and The Heart of a Father are anthologies of essays by women and men in the congenital heart defect community. My husband, some other heart friends, and my father founded Hearts Unite the Globe: A Nonprofit Organization for the Congenital Heart Defect Community (HUG). Our goal was to provide resources for the CHD community and to raise awareness of the #1 birth defect. We started by putting free information on the internet. Our webpage grew to over 100 pages of free information and has been through several webmasters (always a Heart Mom).
In 2013, I was approached by VoiceAmerica to create my own radio show. No one used the word “podcast” much back then. I started “Heart to Heart with Anna” to help families like mine to realize they are not alone. Last year we celebrated our 8th year of programming and our 300th episode. We also reached over 100,000 downloads. These were all exciting milestones for us to reach. Besides that, HUG also has a podcast for the bereaved community (“Bereaved But Still Me”) and a Spanish-Language podcast for the CHD community (“Guerreros Del Corazon”).
As an introvert, I never would have guessed I would be the Host of a podcast and the Executive Director of 2 other podcasts — one in a language which I am not fluent in! It’s been an exciting, unforeseeable journey, but I love how many people I know and how I’ve been able to help people share their own heart journeys in a variety of ways over the years.
Alright, so let’s dig a little deeper into the story – has it been an easy path overall, and if not, what were the challenges you’ve had to overcome?
Naturally, there have been many struggles along the way. First, my son had to survive his first two open-heart surgeries in the first year of his life. He had a stroke, paralyzed vocal cords, and a partially paralyzed diaphragm. Learning how to speak all over again challenged Alex and me; however, I found I could use all the skills I got as an Our Lady of the Lake and UT-Austin graduate studying speech pathology and deaf education. Teaching my children sign language was a way for us to bridge the gap to full communication until Alex could speak intelligibly.
Receiving rejection letter after rejection letter from medical publishers depressed me, although the handwritten notes of encouragement on many of them gave me hope. When I found Dan Poynter’s Self-Publishing Handbook, I felt I finally had the solution I had been looking for. This book helped me realize my dream of getting a book into the hands of families like mine.
There have been many troubles over the years, from printed books having spots in them, to having some books fall apart, and even a couple of books with pages printed and bound upside-down! Whenever problems like these arise, I always find it happens for a reason. I needed to meet a certain person, or I needed to learn how to stand up for myself, or I had to learn about negotiation and better business practices.
When I had to leave VoiceAmerica because they neglected to help me secure a sponsor, I didn’t know what I was going to do. This “problem” was actually another growth opportunity for me. I discovered BlogTalkRadio and took control of my program myself. I learned how to be a sound engineer, how to develop social media posts, and found other people in the CHD community willing to help me. Perhaps if I had stayed with VoiceAmerica, that wouldn’t have happened.
Going to conferences like Podcast Movement helped me learn more about the business of podcasting. To begin with, I learned that my “online radio show” was actually a podcast! They not only taught me the jargon associated with what I was doing, but they also taught me best practices and helped me find a community of other podcasters — people who understood the struggles I was facing.
While growing my nonprofit and my podcast, my book publishing endeavors got pushed to the back burner. I was losing enthusiasm for working on books, even though I had more book ideas in my mind and I wanted to update the books I had already published. That’s when another amazing thing happened that would change my life and would even introduce me to your magazine!
In February 2021, I interviewed two authors for my podcast. One of them was Jenny Muscatell. She was a Heart Mom like me. We understood each other at a visceral level. Our connection was immediate and deep. Several hours later, I would interview Amy M. Le. Unlike Jenny and me, she was not a Heart Mom. Amy was a Heart Warrior — this is a term we use for people who have survived heart surgery. Again, I felt an immediate connection, and I shared a dream with both ladies.
Self-publishing is hard. Having a small press is difficult, too. What makes it so tough? It’s not the writing. What makes the book business so challenging is finding ways and time to get your book before the audience of people who need it. I told Jenny and Amy that I dreamed of making a cooperative bookstore — one where no money would change hands. Instead of making a profit off of one another, we would share our knowledge and expertise. Members could promote each other’s books on social media. We could celebrate each other’s triumphs and brainstorm ways to overcome challenges. We would be a special community of authors — members of the CHD community. Little did I know the results of sharing that dream.
Thanks – so what else should our readers know about your work and what you’re currently focused on?
This is an interesting question. Just recently I hired someone to help me and she said, “You’re a connector.” I think she’s right. I find ways to help people share their stories through my podcasts and through my books. I connect people with the information and inspiration they need. The stories I share provide information about congenital heart disease or bereavement but I think the most important message that permeates what I do is “There is Hope.” At a time when people are often at their lowest, when they’ve been told their child has a life-threatening illness, or when they’ve actually suffered the loss of a loved one, the resources I put together help people to know that they are not alone. What sets me apart is the fact that I have a child who was born with a life-threatening illness. He’s undergone 3 open-heart surgeries and survived. I’ve lost loved ones, including my mother, a brother-in-law, sister-in-law, and father-in-law, and countless children of friends in the heart community. I’ve been there. I understand the depths of despair a person can feel. I’ve also known the exhilaration that comes with the ordinary, everyday things that most people take for granted. Living in the hospital while a loved one faces or recovers from surgery (or passes away) teaches us many lessons. Most of the people I hang out with appreciate each and every smile, sunset, sunrise, or hug in a way that people outside our communities don’t understand. We all belong to a group we never wanted to be in, but now that we’re here, we’re thankful for the companions who travel this path with us.
Are there any important lessons you’ve learned that you can share with us?
I think the most important lesson I’ve learned along my journey is that there can be hope in loss, there can be joy while suffering, and there can be growth from despair. When you are in pain and suffering, it’s easy to think you’re never going to feel normal again, that you’ll never be able to truly laugh again or enjoy life. Feelings of guilt, doubt, misgivings, and sadness can permeate everything we do after we learn our loved ones are facing their mortality. Most of us wish it were happening to us instead of to our loved ones and we wish there was some way we could make everything all better. Moms are supposed to be able to kiss away boo-boos, apply a Band-Aid, give a hug, and send out children back out to embrace the world. When your child is born with a broken heart, there aren’t enough Band-Aids in the universe to make the boo-boo better and no amount of kisses, tears, or prayers will fix what’s wrong. When I lost my mother, I wondered if I could have done more to help her. I think we all experience these feelings, but I have learned how to be a more compassionate person. Through my suffering, I’ve been able to help others. Through my losses, I’ve come to appreciate what I have even more and I’m lucky to have faith that I’ll be reunited with my loved ones again someday. Even when I was in the hospital with my son or my mother, I was able to find joy in the little things, whether it was playing Plants versus Zombies with Alex or whether it was enjoying a root beer float with my mom and sister. I’ve grown into a very different person than the one I imagined I’d be when I was young. It doesn’t really matter what happens to each of us. What matters is how we handle what happens to us.
Contact Info:
- Email: anna@hearttoheartwithanna.com
- Website: www.heartsunitetheglobe.org
- Instagram: https://www.instagram.com/hearttoheartwithanna/
- Facebook: https://www.facebook.com/HearttoHeartwithAnna/
- Twitter: https://twitter.com/AnnaJaworski
- Youtube: https://www.youtube.com/channel/UCGPKwIU5M_YOxvtWepFR5Zw
- Other: https://www.babyheartspress.com/
