Heart to Heart with Anna

From Manuscript to Masterpiece: Tales of Tenacity and Triumph

January 16, 2024 Megan Tones and Anna Jaworski Season 19 Episode 433
From Manuscript to Masterpiece: Tales of Tenacity and Triumph
Heart to Heart with Anna
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Heart to Heart with Anna
From Manuscript to Masterpiece: Tales of Tenacity and Triumph
Jan 16, 2024 Season 19 Episode 433
Megan Tones and Anna Jaworski

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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/

& so much more
A bi-monthly podcast where we share the stories of our Caregivers, patients and...

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Send us a Text Message.

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/

& so much more
A bi-monthly podcast where we share the stories of our Caregivers, patients and...

Listen on: Apple Podcasts   Spotify

Support the Show.

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

Social Media Pages:

Apple Podcasts
Facebook
Instagram
MeWe
Twitter
YouTube
Website

Speaker 1:

I think the challenge is when you want to tell your story. You want to tell people so many things and it was cutting back on some of those ideas and focusing on others and really creating a rich and vivid essay about just one or two things. I think that was a lot more engaging.

Speaker 2:

Welcome to Heart to Heart with Anna. I am Anna Jours, the Enduro host.

Speaker 3:

I'm also a heart mom to an adult who was born with a single electrical heart and who is 29 years old. That is the reason I am the host of your program. I'm just getting over COVID, but I didn't want to miss a chance to talk with my dear friend and co-editor, mika Toast. Today we're going to talk to you about what it was like for us to put together the Heart of a Heart Warrior. Now it's not too late for you to share your story. We'll also be talking about the Heart of a Mother and the Heart of a Father, and in the third segment we'll talk about some new books that we'll be working on and how you can be part of those projects. Mika turns is 40 years old. She was born in Australia with a large BSD and has had three open heart surgeries.

Speaker 2:

Mika works as a researcher with rare disease registries and lives in Brisbane, queensland, australia, with her husband and four dogs.

Speaker 3:

At her spare time she likes to write, sew, paint and she's also a gamer. In addition to being a co-editor of the Heart of a Heart Warrior, she contributed four pieces to the book, and what I love about her contributions is every piece is so different. I'm super happy to have you on the program today. Welcome back to Heart to Heart with Anna Meagan.

Speaker 1:

Hi Anna, thank you so much for having me back. It's been quite a while since we've been in touch, so it's great to be back.

Speaker 3:

Yeah, it has been. It's been way too long since we've talked, so I'm really looking forward to getting into this program with you. I think the last time that we talked on Heart to Heart with Anna it was when we were talking about the Heart of a Heart Warrior, and so much has happened since the book debuted, so let's share with everyone how the book has evolved over time for us.

Speaker 1:

Yeah, I remember one of the big things that we did was the kickstarter, and that was something that we spent a lot of time promoting. I remember talking to you about that last year and you said that you put a sign on the fence of your house and all sorts of things to try and attract attention. Of course, I was sharing it all the time on Facebook and part of the reason why we did a kickstarter was that there was quite a cost associated with editing and printing all of the books. We did a lot of that work ourselves as volunteers, but there is only so much that we could do ourselves Exactly right.

Speaker 3:

So I hired a professional editing company to come in behind us and to give an unbiased look at the book, and that was an experience and quite an expense. It was much more than I expected it would be and I was helping that the results would be a little different. That they were. I think you and I actually did a better job on the editing than the company that I hired.

Speaker 1:

Yes, yeah, I think so too, and also the kickstarter, I think, was really great for promoting the book. We drew so much attention to the book. So many people shared our campaign, and that's what I was telling people all the time If you can't afford to donate at this time, then sharing the campaign is a great way to help to promote it.

Speaker 3:

Absolutely. One of the reasons I wanted to do a kickstarter campaign was this was my third book in the heart of a series that I've been working on. It started 25 years ago with the heart of a mother, and then 10 years later I published the heart of a father. And here we are now. Just last year we published the heart of a heart warrior and I loved putting together those books. But it was my dream for decades for me to publish a hard cover book. But when I checked into the cost of printing a hard cover book, there's no way my small publishing company could afford to do it. But what I really wanted was for all of you contributors to the book to have a hard cover copy of the book. So I thought you know what? If we do a kickstarter and we earn enough money, I can afford to produce a hard cover copy of the book and everybody here who has contributed can get a copy. So how did it feel to you me again as a contributor to receive that hard cover copy of the book?

Speaker 1:

It was amazing. I remember we got this big box in the mail and I thought what could this possibly be? I actually thought it was tens of pet food at first, because it was so heavy, and then I opened it up and I see all this terrible. I'm like it's my books. They finally arrived with that new book smell and everything. It was very exciting to be able to just pick that up and hold it, and I got a couple of extra copies because of the number of contributions I made. So I gave a few of them away at Christmas time as gifts to family and they were really excited as well, and I don't think I could have got them a better present, to be honest.

Speaker 3:

I don't think so either, because you were all over the book. I mean, as well as being a co-editor. We took turns writing the introduction to the chapter, so every other chapter you wrote the intro for that. But then there were four different contributions from you, and what I love is that your contributions were so different everything from a science fiction, fantasy type story which was in our works of art chapter that was really cool to writing about a trip to Egypt and being a volunteer. And then what was the other essay you wrote?

Speaker 1:

That was the one about my school. I was just so wearing the brice in my school Right yeah, I mean.

Speaker 3:

So all of your essays were definitely related to being a heart warrior.

Speaker 1:

But from so many different aspects of your life, yeah, yeah, that's right, and I had a lot of fun doing those essays. Lots and lots of fun. I think everybody did really.

Speaker 3:

I think so too. I was really excited when we got enough contributions to say, okay, we've got a book. I mean, I remember us looking at all these different contributions and thinking, oh my gosh, how are we going to put these together? Because there were several essays that look like, oh, these could make a chapter, or, wait a minute, we could move this one over here and make a different chapter. And I think that was one of the big challenges was figuring out exactly how we were going to group all of the essays and make a cohesive book. Don't you think so?

Speaker 1:

Yeah, definitely. I remember going through them all and I worked as a researcher as well and I thought there are some common themes here with the different essays. And that's where I started with grouping them together, because the initial call we put out it was really just telling a story about how you overcame an obstacle and you're alive, or to talk about something that you're very passionate about, and it was quite interesting the themes that we got in the end, I think I think so too, and what really helped was both the heart of a mother and the heart of a father had three general themes that I broke the books down into.

Speaker 3:

And then I went in May to the Independent Book Publishers Association PubU conference.

Speaker 3:

It was my first time to ever attend a publishing conference, which was really exciting for me, and at that conference I had a chance to listen to a gentleman I have listened to before. I read articles that he has written in the IBPA magazine and one of the things that interested me about here was the fact that he deals with specialty sales and our book is a specialty book. So I thought from the beginning when I started Baby Hearts Press none of the books that I publish are for everybody. They're just not. My books are for a very specific niche audience and this is what this gentleman specializes in. So I was able to get a one-on-one consultation with him after the conference and I told him about my publishing company and as I was telling him about my books, he said, anna, you need to break those big books into three smaller volumes. It would make it easy for people to consume and it will help your publishing company to grow. And I didn't think that was going to be that hard, but it is really hard.

Speaker 1:

Yeah, it was quite difficult, wasn't it? I mean, we had the essays already organized into thematic chapters and then what we had to do was to reorganize those chapters into meta-themes. So which chapters can we group together to make into one volume of the book? And we ended up with survival, endurance and transformation.

Speaker 3:

Yeah, so we ended up that we did reorganize it a little bit compared to what we thought we were going to do initially, but I don't think that's what the hardest part was. I think for me, what was harder was realizing oh my goodness, I need a new form word for each of the books. I need a new conclusion. I need to make sure there's continuity with the way I write the text on the back of each book. It was things like that that you think oh well, just break the one book into three. That's not that hard, but there are lots of little pieces plus having to get new ISBN numbers.

Speaker 3:

The Kickstarter book is the only book that has all three volumes together and that makes it really special for me, and I really love it that that has all three volumes. The only way anyone can get a copy of that book is if you were gifted one by somebody who contributed to the book or if you contributed to the Kickstarter campaign. So that was really exciting to me. But then we made the individual volumes one, two and three available to the public at large and, for the first time ever, baby Hearts Press started to create eBooks, and that had its own unique challenges.

Speaker 1:

Yes, you certainly remember when we were working on putting the book together ourselves, remotely. That was quite a challenge as well. But why was the eBook such a challenge for you in the end?

Speaker 3:

Well, that's a good question. It wasn't something that I felt comfortable doing myself, even though I thought I could, but when I started to work on it, even though we had PDFs of the book, when I tried to upload it into a eBook converter, photos would not be where they were supposed to be. Things started moving around and I finally ended up hiring somebody who knew how to do it, but what that required for me was a lot of editing because they used a different font. I didn't understand what reflowable ePub means, but that has a lot of consequences when you use a hyphen. I didn't realize this, but with the reflowable ePublishing program that is used, they put hyphens in words so that there aren't big gaps at the end of a warning, and if you used a hyphen, they treated it like it was supposed to be a compound word and so it would take out the hyphens Every place in the book that we had open heart surgery, where we have open-heart all those hyphens left. I had to go in and really read every single word of the book again when it got converted to an e-book because of little things like that that are formatting issues that nobody ever thinks about.

Speaker 3:

The hyphen problem was a big issue for me because it changed so many things. I just couldn't believe how many hyphens we used. Me again, we used so many hyphens in our book. It was just crazy we did. Then we had photos and we had decided that most of our photos did not need captions. I'm so glad we decided that, because there were a lot of issues with the captions on the photos. For the photos that did have captions, all of a sudden, instead of being a smaller font and being close to the picture and looking like a caption, it would be bold-faced and it would be in the center of the pitch. That was the biggest problem. There's lots of little formatting issues and I would correct wine and when the man who was formatting the book would send it back to me and say, okay, it's fixed, that would be fixed, but then I would find new problems in other places. I think the worst wine one of the volumes took nine editing sessions before it finally got to the point where I felt like, okay, it's good enough for me to put it out there. I think that's one of the things and it wasn't really anything that anyone did wrong. I just think there are little glitches that happen when you convert a book from hardback to paperback and then from paperback to ebook.

Speaker 3:

I didn't do myself any favors, because we decided that the hardcover edition would be a six by nine inch book, but we decided with the paperback edition that it would be a five and a half by eight and a half, because it fits in your purse a little bit more nicely and it just looked like that would be a better fit for that book. But that changed everything because, of course, all the margins were different and so the way the photos fit into the chapters was different, and it ended up causing a lot more issues. We allowed every contributor up to two photos, and most of the essays have two photos. They have a bio photo and then there's another photo that is allowed to be in the essay. There were 72 photos in the book. That's a lot of photos to have to deal with.

Speaker 3:

Wow, I didn't realize it was that many. Yeah, it's so popular photos. Therefore, formatting the photos and dealing with any of them that had captions, making sure all of the photos were with the right essay, even though we tried to be so careful the way we labeled everything, we did hire somebody else to format the book for us. But the paperback and the Kickstarter book, and we ended up having so much trouble that I renamed control of the project and hired another person who I felt I could communicate with better, who also had a Mac. I think that was another big issue, don't you, megan? You had a PC, I had a Mac, and just going back and forth and editing things on the Mac version of Word versus the PC version of Word, we would see glitches in the manuscript.

Speaker 1:

Yeah, I remember that was happening all the time. It was likely had gremlins, but I'd heard that from other people as well. Just little incompatibility issues that can happen, and particularly with table of contents. I remember that was such a nightmare.

Speaker 3:

Yeah, so it was a nightmare. We spent a lot of time on that.

Speaker 3:

We did so when I ended up hiring Lauren England, who was also one of the contributors she was a Mac user, like I am and when we reclaimed the project and did not involve anybody else with a PC and just worked Mac to Mac. That's when we finally were able to iron out almost all the problems. I'm sure, just like with any book that you buy at the store, I'm sure anybody can pick up our book and say, oh Anna, you missed a comma here or I saw a mistake. But hopefully any of the mistakes are very minimal, because we just went here with my two girls.

Speaker 1:

We did, yeah, we put a lot of time into going through it.

Speaker 2:

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.

Speaker 4:

Anna Jaworski has written several books to empower the congenital heart defect, or CHD, community. These books can be found at Amazoncom or at her website, wwwbabyheartspresscom. Her best seller is the Heart of a Mother, an anthology of stories written by women for women in the CHD community, and as other books, my Brother Needs an Operation, the Heart of a Father and Hypoplastic Left Heart Syndrome. A handbook for parents will help you understand that you are not alone. Visit babyheartspresscom to find out more.

Speaker 1:

I've been excited about people's reaction to the book so far. I've had a few people asking me if they can share their story. What have you experienced, Anna?

Speaker 3:

Oh yeah, it has been super exciting being here. I had a long talk with my dear friend, karl Wolford, and he and I have known each other forever. We both started on the Children's Heart Foundation together. Karl is a grandfather who was born with a fairly rare congenital heart defect. He's been on my program to talk about it before and I finally twisted his arm and convinced him to write an essay and in fact he got so excited he has ideas for more than one essay. He actually has ideas for two or three. So that is super exciting.

Speaker 3:

And then Hannah Dillon reached out to me. She's already made a submission for the next Heart of a Heart Warrior, so we're already receiving contributions for the Heart of a Heart Warrior. And then I've had some moms talk to me and I've already had some contributions for the next heart of a matter book. So I'm super, super excited with the reaction that we've had from people who have seen the newest book come out. That's great. Yeah, I'm really excited. And you and I discovered something new. So let's talk about the new thing that we're doing with people who want to contribute to the book. Megan Right, right.

Speaker 1:

Yes, that would be Scribberphile. So Scribberphile is like an online community for authors and we have a group set up on there and I've invited a couple of people so far and I've made a start on a new essay there myself. So we're hoping that it will become a little community of writers where people can share their progress on their essays that they're working on, that they can get feedback from others, they can provide feedback. I think it's a really great way to collaborate online.

Speaker 3:

Absolutely. I try to do this, as you know, with Facebook. We started a Facebook group for the heart of a heart warrior and I invited people to share their essays and to show each other how their essays could morph over time once they got feedback from the editors. You and I do a lot of what's called developmental editing, and even Amy and Lee helped us out by providing some developmental editing feedback, and what a developmental editor does is they will read somebody's essay and they will help them to actually develop the essay with certain themes or going in a particular direction. And for me, of all the different types of editing, I do proofreading, line editing. To me, developmental editing is my favorite type of editing to do. Was that true for you too, megan?

Speaker 1:

Yeah, I think so. I remember a few people I worked with. We worked together to really discover what the theme was of their essay, what they were really trying to say in their essay, because we had quite a short word length, really being 1500 words. I mean we're a little bit flexible on that. But I think the challenge is when you want to tell your story, you want to tell people so many things and it was cutting back on some of those ideas and focusing on others and really creating a rich and vivid essay about just one or two things. I think that was a lot more engaging.

Speaker 3:

Absolutely. There were some people that wanted to tell us their whole life story in 1500 words, and it's just not feasible. You can't really get into any depth. So we were encouraging people no, no, let's focus on how you feel about service, or let's focus on motherhood, or let's focus on growing up with the CHD. We gave them a theme to help them focus their part of the story with just that theme, and what ended up happening was we had a couple of people like you, megan, who realized you had more than one essay in you, and it was exciting to see some people like Kim Russell.

Speaker 3:

She wrote one essay and then she said wait, can I write another one too? And so she wrote about adopting a child as well as being a writer. And I thought that was really great, because we were so focused and we helped them develop one concept, one really important story in their life, and to develop it as fully as possible, that it gave them the freedom later to tell another story and to also get into a little bit more depth in that story. Is that how you feel it happened for you too, megan?

Speaker 1:

I think so because initially I was trying to put a lot of stuff into an essay and then, I think was the other essay started to come in as well. I could do something about that, for example. Thank you.

Speaker 1:

My essay, moonlighting as a CHD, is about a time when I was doing some volunteer work as a volunteer patient for medical students who were practicing their examinations, like an intake exam for a patient who is new to a doctor or presenting to an emergency department. So I was telling my story over and over to them, but without revealing what my condition actually was, and it was their job to try and piece together what was going on with me. So in that essay I was able to incorporate a few little flashbacks about different things that have happened over the years.

Speaker 3:

So yeah, that's a lot of why she can tell you a story Thank you.

Speaker 3:

Yeah, I really did love that story. I love the way you put that together. So, yeah, developmental editing for me is probably my favorite type of editing, but unfortunately it's also the most time consuming, because the best writing is rewriting and really zeroing in on what you want your message to be and trying to bring in the different senses sight, smell, touch. The essays that really stick with people are the ones where people feel like they're right there with the storyteller, and that's one of the good things that you did with your engaging story about being a volunteer. I felt like I was right there with you and I could just imagine how some of these new doctors, or soon to be doctors, were feeling being presented with somebody like you, because you're not the kind of patient they're going to see all the time. You're a very unique person.

Speaker 1:

That's also thank you for that, Anna, and a few of them did actually guess correctly, which was very encouraging.

Speaker 3:

That is encouraging and that's what we're hoping to do with her to heart, with Anna and all of our books is to raise awareness, so it doesn't seem like such a foreign concept. But, unfortunately, with the Facebook group that we started to help people learn about how to be a better memoirist most people do not go through school and learn how to be a memoirist. I certainly did not. It's something I have learned over the years as I've been working on these other books. The community on Facebook just didn't really engage the way I hoped they would, and when I found ScribbaFile, I got so excited because here were people just like us. Not everybody had been published, but they were critiquing each other. They were learning from the critiques they were giving as well as the critiques they were getting.

Speaker 3:

Scribbafile also offers online classes. Some of the classes are free. I've already attended one of the classes on memoir writing and it was really well done. I really enjoyed it. So I'm going to be using ScribbaFile for all of the different contributors to come together. They'll get a chance to see each other's works and help one another. This should enable me to work on more than one book at a time, so I'm looking forward to that as well. I think that the ScribbaFile community is going to make our writers a little bit more engaging and more connected with each other. Don't you think so, chimigen?

Speaker 1:

Yes, yeah, I think so. On ScribbaFile there's a forum, so I'm hoping that people get on there and chat to each other as well as submitting their works.

Speaker 3:

Yes, so this is something there. So for anybody out there who says, well, I'd like to write for the heart of a mother or the heart of a heart warrior or the heart of a father, but I've never written anything before, I don't know if I'll be good enough, we'll help you. But you don't have to be a professional writer. If you aren't a professional writer, great, that's wonderful. But if you're not, you still have a story worth sharing and we'll help you. So come join us.

Speaker 3:

The group I started on ScribbaFile is called Heart to Heart. But if you aren't sure, because there are so many groups on ScribbaFile, if you're not sure, I put an anatomical heart as my little logo because I figured that would help it to stand out. And some people have already joined and liked the name Heart to Heart but didn't realize that it meant congenital heart defects. So we've had some people who have joined and left because they just liked the name but didn't realize, even though I wrote a description, that anybody is welcome to join. You don't have to have a congenital heart defect. But really my purpose in putting together the Heart to Heart group on ScribbaFile was for us to have a CHD writer community and I hope we have even more people to join us.

Speaker 1:

I hope so too.

Speaker 5:

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 non-profit 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 2:

And 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:

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

Speaker 2:

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

Speaker 4:

Enjoy the music.

Speaker 2:

And tonight forever.

Speaker 5:

You are listening to Heart to Heart with Anna. If you have a question or comment that you would like to address 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:

Anna, I noticed on the Baby Hearts Press website that you have two new books listed that you'll be putting together. Can you tell me about those books?

Speaker 3:

Yes, I am so excited about these books. Now I'm starting to collect stories with the heart of a CHD angel and the heart of a CHD sibling and for those people who have listened to Heart to Heart with Anna over the last 10 years, there was one season where I did all CHD sibling episodes. I loved it. It was so cool.

Speaker 3:

My child, Joey Jaworski, came on and talked about what it was like to grow up with a sibling with a CHD.

Speaker 3:

I had all kinds of brothers and sisters come on the program and we talked about all things sibling related and I thought you know what. It's time for their stories to be celebrated. I think that growing up with a sibling who has a heart condition or any kind of chronic illness that's not the typical way children grow up. Thankfully, I think that they have special issues watching their siblings having to take medicine or having to have open heart surgery or other kinds of procedures. Many siblings watch their sibling not be able to place boards or dance or do things that they can do, and some of those children sometimes feel guilty that they are able to do things that their sibling cannot, and I think that some of those stories need to be shared. I've also been amazed at the resilience and the compassion that siblings have shown for their brothers and sisters with heart to fix. Considering you have two siblings, I'm sure you can imagine where your siblings might have stories that could be shared.

Speaker 1:

I think so. One of them is four years older and one of them is eight years younger, so I imagine that they would have very different perspectives. I know, growing up, my older brother. He was always looking out for me forever, somewhere playing or at some kind of school event. He'd always make sure that I was okay. And the younger one too. I mean it must have been very tough for him. I had surgery when he was two years old, so he's always been very concerned for me, much like my older brother has. So over the years they've both, in their own ways, looked out for me and they've always been very concerned and caring, and I have two towards them with the things that they've been through as well. I think in some ways that it can make siblings a little closer together.

Speaker 3:

Yeah, I think it can, but everyone's unique.

Speaker 1:

I think every story is unique, and I think that's something that doesn't get talked about often enough. It's often about parents and their children, but not so much about siblings. I think that the siblings are in a unique situation. They need support as well. They need to have their stories heard.

Speaker 3:

I think so too, and I think they need their stories validated. And I think that being a CHD sibling can sometimes be a little bit isolating. I know that for poor Joey. When all of a sudden there was a new baby in the house, but the baby was a sick baby, all of a sudden we weren't allowed to have play dates and we didn't go to church, we didn't go to restaurants. We were very reclusive for a while because we had an emergency open heart surgery and then we knew that we had to keep an eye on the baby and that the baby's body would let us know when the next surgery was going to happen, and it would probably be between six and 12 months, but we didn't know when. It was completely dependent on the baby's oxygen saturation level and that wasn't something that we could totally predict. So Joey's life was kind of upended and he was three. He was three, so that's a very impressionable age?

Speaker 1:

Yes, yeah, that's right. Well, I had a surgery when I was a baby and when I was five years old. So my older brother he was only four or five when I had my first surgery and about nine when I had the second one. So that was very hard for him. He had to stay with our grandparents and it was a big disruption for his life as well. And the middle surgery I had he was 14, in grade nine, and that's often quite a difficult age for young people in general.

Speaker 1:

But having this going on, with me and Mum and Dad being preoccupied, and my younger brother, well, he was two when I had the surgery, when I was 10. And then, the poor kid, he was graduating from high school the day that I had my latest stucco and heart surgery, when I was 25. So it was just such a big day for my parents. They started out in the hospital with me in the morning and I said you guys didn't have to come here, and then there was something going on with my older brother that day too, so they were away with him during the day and they came back to visit me in the afternoon and then off to my little brother's graduation at 9.

Speaker 3:

Wow, what a little day. It was just wild that day.

Speaker 1:

So I mean, that's what it can be like sometimes, like that is a really extreme example, but the three of us had something major going on on the same day.

Speaker 3:

Yeah, well, when it rains, it pours and it definitely feels like that as a period. So I'm really helping that the heart of a CHD sibling will be a great venue for people to share stories like you just shared with me. I think that those are stories that will appeal to and be understood by others in the CHD community. And the heart of a CHD angel.

Speaker 3:

Honestly, that has been in the back of my mind since I first decided to do the heart of a mother and I debated for a while if I wanted to have a chapter in the heart of a mother devoted to mothers who had lost their children, and I thought I really can't do justice to the heart of a mother without sharing the stories from some mothers whose children had passed away. Because that is really what brings us together as such a tight-knit community is the fact that we are facing life and death issues of our children on a regular basis, and most parents, thankfully, don't have to think that way. But for us it's totally different. The minute your child is diagnosed with a congenital heart defect, you're painfully aware that you may outlive your child and that feels unnatural and it's really rather terrifying.

Speaker 3:

So I did have a chapter in the heart of a mother called Shooting Stars, and that was for mothers whose children had died very young. And then, by the time I put together the heart of a father, I was working with some of the husbands of the women who had written for the heart of a mother, and this was 10 years later. Sadly, some of the people who had made it through early childhood and even through middle childhood into early adulthood passed away. So we had a Shooting Stars chapter in the heart of a father for dads who had lost babies. But then we ended up adding another chapter called Short Journeys, where the fathers who lost adults or older children could share stories about that loss, because it's a different type of loss to lose an infant versus to lose somebody who has been part of your family for years or maybe even decades.

Speaker 1:

Absolutely. I was wondering about that, actually, that the experience must be very different depending on the age of the child, and I think that there will be lots of people out there who want to tell their story and want their children to be remembered. So this will be a very important book and I was wondering who will be co-editing those books with you.

Speaker 3:

Well, thank you for asking because, first of all, I'm super excited that you did agree to co-edit the next edition of the Heart of a Heart Warrior, and I thank you for that, megan. I can't imagine doing that book without you now Putting together the heart of a CHD angel. That needed to be done by somebody who had experienced it or at least that's my feeling. And I have a wonderful dear friend, desiree Vought, who is going to be a contributor and we're going to take it a step at a time Just to see if she's also interested in being a co-editor for the book. She's an excellent writer. I've known her for over two decades and she's a very gifted writer. I think she would be able to help people with that developmental editing to find their stories and I know she would do an excellent job. And so that I could work on more than one book at a time because, as you know, it's very time consuming to work on these books I'm turning to some other friends as well, and another dear dear friend of mine, sherry Turner, has expressed interest in being a co-editor for the next part of a mother book and I'm super excited about that.

Speaker 3:

She and I have known each other for decades and she has come on Heart to Heart with Anna to talk about her son, thomas, but she was the head writer for the entire first season, heart to Heart with Michael, which is now known as bereaved, but still me, and that's our bereavement podcast, because she lost Thomas as an infant.

Speaker 3:

So her writing skills are greatly admired by me and I'm just thrilled that she has expressed interest in working with me on that book. But I would love to have some other co-editors for some of the other books, like the sibling book if there is a CHD sibling out there who would like to work with me and help me with the new essays that we'll have coming in for that, but that would be lovely. So if anybody is interested, reach out to me on Facebook or LinkedIn. I'm definitely interested in working with new writers and new editors. Megan, I can't believe our time is almost up already. This has gone by super fast. But before we conclude this episode, what if I still have for people who feel they have a story to share but don't know how to get started?

Speaker 1:

That's a great question, anna, and I know when I was in that position a few years ago, starting my story, I had a little bit of trouble narrowing down an idea. I started talking about all different things. I think about the soldier I have I cared, the one that I faced again when I was an adult. But I think what might be a good idea to get started, if you're really not sure, just start writing, start journaling every day your thoughts, ideas, memories, that sort of thing, and after a couple of weeks maybe go back and just see what's in there, what sort of themes are coming up, what things strike a chord with you the most like what you feel the most passionate or interested. And then I think going with a theme or one idea is probably better than trying to pack too much into your essay, and I think a project like this is a really good way to tell your story or interesting parts of your life or anecdotes without the pressure of trying to write a whole book.

Speaker 3:

Yes, I agree, because that's a much bigger project. It is absolutely. And in a script-of-file group, megan, I'm going to be doing some exercises with our members, so I'm going to start putting out a weekly tell me a story about this. I'm starting to gather suggestions from different books that I've been reading on ways that we can do that and I'm helping that through some of those exercises, some people may discover a story that they want to share. Yeah, yeah, yeah, I hope so.

Speaker 1:

I think starting with the theme is always a good idea, like I did have. Someone reach out to me, a younger lady. She wanted to write an essay about how her daughter was born and I thought, even though we covered that a lot in the previous book, there's also a really important generational factor there. Like, these mothers I think were born in the 1980s and earlier, whereas this lady, I think, was born in the late 1990s. So things would have changed a lot by then, I'd imagine.

Speaker 3:

Oh yeah, absolutely yeah, I agree.

Speaker 1:

That's another important thing Our authors. For our previous books their ages ranged from about 20 to their 60s. But even if you're thinking, oh, I'm writing an essay about something that's been done before, well, it's your experience. You might be a lot younger or older, you might have grown up in a different place, you might have a different CHD. To the people who've covered that topic before, so I think those are all good points.

Speaker 1:

I don't think there's any ideas that are bad or silly or boring. Well, I would say that sometimes we get a lot of questions.

Speaker 3:

We get new ideas, like in the heart of a mother and the heart of a father. Those were all just people's personal stories. But by the time we got to the heart of a heart warrior we decided to change things up a little bit and have a section that was just works of art. So we actually have a pencil drawing, we have a painting and I had a tutor for people who had talked about doing a little photo essay like a photojournalist type essay, and I was so excited about that and unfortunately neither one of those came through.

Speaker 3:

But maybe in the next edition of the heart of a heart warrior maybe we'll have some people who are really good photographers, who do a good job of telling a story mostly through photos. We can't afford to have a whole book like that because it is more expensive to have lots of different photos, especially in a printed book. It doesn't matter in a e-book, but in the printed books it does cost more to have the higher quality paper to be able to make those photos pop. But one of our beta readers commented how much they liked the fact that you had written a fantasy story in there, so it wasn't just people's stories about their CHD, but that you had overworld.

Speaker 3:

That had nothing to do with the heart and it was refreshing that they could read that that you could be a fantasy writer.

Speaker 1:

Yeah, I think that prose or poetry or other works of art I think they can be really powerful ways of expressing what's going on. And I actually have another short story that I've written that I might go back and do a bit of work on. That I think could be of interest to the new volume. I'd certainly be happy, once I've gone through and done some work on it, to put it out there on Scribba File and see what people think.

Speaker 3:

I can't wait to see it. I know you've shared with me a couple of other things in the past and you're a really creative writer vegan, so I can't wait to see what you'll come up with, and I'm really eager to see who else will be joining us for these new books. I really appreciate you hanging in there with me as a co-editor and somebody who is willing to share the news about what Baby Hearts Press is doing, because I believe everybody has a story to share.

Speaker 1:

Yes, definitely they do.

Speaker 3:

Thanks for coming back on the program today, megan, and for talking to me about all things writing. This has been fun.

Speaker 1:

It has. It has, and I was going to say no worries, which is a very Australian thing. You're very welcome. It's been a pleasure, as always, talking with you today and I look forward to getting into volume four and beyond of the Heart of a Heart Warrior.

Speaker 3:

Me too. Oh my gosh. Four and beyond. It's a little scary, but it's also really exciting. Well, friends, that just concludes this episode of Heart to Heart with Anna. Thanks for listening today. I hope you found the program interesting. Please drop us a line on our Facebook page or YouTube or Instagram channel. You must know what you thought of the episode. I'll put a link to Baby Hearts Press and our scribble file group in the show notes. And until next week, remember my friends, you are not alone.

Speaker 5:

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.

Heart to Heart with Anna Jan. 16, 2024 episode
(Cont.) Heart to Heart with Anna Jan. 16, 2024 episode
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