October 2024 Heart to Heart Live: From Trick-or-Treat to Compassion Fatigue

Do Halloween festivities bring more joy or concern when you’re living with a congenital heart defect? Ashley DeMarco shares her journey growing up with complex heart conditions, turning personal challenges into stories of resilience. Alongside her, we hear from Michael Liben, who navigates grief with humor on his podcast "Bereaved but Still Me," and Rita, who provides a multi-generational perspective on congenital heart disease (CHD) with her family's experiences. Together, we unravel the nuances of navigating health and community as young adults and parents in the CHD world, painting a picture of hope and solidarity.

As we transition into the spirit of Halloween, nostalgia and safety tips blend together in our lively discussions. We reminisce about trick-or-treating in tight-knit communities, while also highlighting the essential precautions for children with heart conditions during these festivities. The contrast between past and present perceptions of safety reveals a world that’s both cautious and filled with connection through shared medical experiences. Our conversation is a heartwarming reminder of the bonds formed between parents and children, especially when magic and medicine intersect.

Finally, we address the often-overlooked emotional toll of compassion fatigue. With stories from heart camps and non-CHD friendships, we explore the challenges of maintaining relationships while living with ongoing health issues. Rita reflects on a memorable live show, demonstrating how our means of connecting have evolved. The conversation serves as a beacon for understanding and connection, underscoring the profound need for community support. We invite listeners to contribute their insights and stories, enriching the dialogue and reinforcing the shared journey of the CHD community.

Helpful Links:

The Rita, Victoria and Heidi Scoggins' episode: https://tinyurl.com/3Scoggins

Amy Erhart's first Heart to Heart with Anna episode: https://www.buzzsprout.com/62761/episodes/15810923

One of Michael Liben's Heart to Heart with Anna episodes: https://www.buzzsprout.com/62761/episodes/736588

Compassion Fatigue Episode: https://www.buzzsprout.com/62761/episodes/736588

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 October LIVE Heart to Heart with Anna Show (2024)
• 12:23 Thank You to Our Newest Sponsor!
• 12:49 HUG Disclaimer
• 13:09 Today's Discussion
• 25:28 Send Us Your Feedback or Ideas!
• 26:02 Audience Sharing Time

Transcript

October 2024 Heart to Heart Live: From Trick-or-Treat to Compassion Fatigue

[00:00:00] 

Anna Jaworski: Welcome to Heart to Heart with Anna. I am Anna Jaworski and the mother of an adult with a single ventricle heart. That's the reason I'm the host of your program. Today's show is a huge departure from the kind of heart to heart with Anna show we normally do.

Anna Jaworski: This is the second live show I'm doing since attending podcast movement 2024. This is a chance for us to do a live episode with a studio audience that allows for more questions and answers and honest conversation. Heart to Heart with Anna usually only features one or two guests, so to have a studio full of guests is always exciting for me.

Anna Jaworski: Just like last month, this show is unscripted, so we're going rogue. That puts all my Toastmastering skills to the test. And for those of you who don't know what Toastmasters is, it's an international organization designed to help people become better communicators This [00:01:00] episode will basically be one table topics question after another, and it will also be mixed in with some great conversation.

Anna Jaworski: So I'm really looking forward to that. I am blessed to have an awesome producer here today. Thank you, Rachel Gott, for stepping up and accepting this challenge.

Rachael Gott: You are so welcome. I'm happy to be here and I'm excited to chat with everyone.

Anna Jaworski: I know, me too. We have a great studio audience today. And just like last time, I'd like to start with brief introductions from our attendees, and then we'll start the Q& A session. I'm going to start with Ashley, Ashley DeMarco. Can you please tell us a little bit about yourself, your relationship to CHD, whether you're a heart mom or an adult with a CHD? I have a feeling I already know the answer since I saw your t shirt. 

Ashley DeMarco: Yes, yes, we already saw my shirt in the beginning. I'm Ashley was born [00:02:00] CHD.

Ashley DeMarco: I'm a heart patient, I was born with pulmonary atresia, intact ventricular septum with right flow angioplasty with right heart gland operation, like the short is P A I V S. In 2018, I had a pacemaker placed for sick sinus syndrome, and then over the years I developed other things like right ventricle hypertrophy, arrhythmias, and my new thing is cardiac autonomic neuropathy.

Anna Jaworski: Oh, wow. 

Ashley DeMarco: Yeah. So a lot of new. 

Anna Jaworski: That's a lot. 

Ashley DeMarco: Yeah. So a lot of new things as a young adult trying to navigate the world. 

Anna Jaworski: Yeah, that is. That's a lot to navigate. 

Ashley DeMarco: Yes. 

Anna Jaworski: As an adult. Were your parents there by your side anyway? 

Ashley DeMarco: They're always there. My parents are always, yeah. 

Anna Jaworski: I love hearing that. 

Ashley DeMarco: Yeah.

Anna Jaworski: Welcome to the episode today. I'm excited to get to know you. The second person who came in the room was Michael Lieben. He's no stranger [00:03:00] to Heart to Heart with Anna, but maybe not everybody knows him. Michael, let's go ahead and let you unmute and tell us a little bit about your relationship to CHD.

Michael Liben: My daughter was born with double outlet right ventricle, and she was also autistic, and at age 15 she succumbed to epilepsy and then after that I was on your program, and you asked me if I would do a short series. On Grief, and I said, okay, a short series. How many is that? And you said 12. I want to do it over the course of a year on my show.

Michael Liben: And I said, well, okay, that sounds like fun. I'll give you three. And if I'm still alive after three, we'll do 12. And that was almost eight years ago. And we're still doing it. And we're still, I don't know, I don't know how it's going to end. 

Anna Jaworski: We're really close. Like a Truman show. How will it 

Michael Liben: end? I don't know.

Anna Jaworski: And it's been a lot of fun. We've had a lot of laughter, which seems [00:04:00] bizarre for a podcast on grief, but. That's 

Michael Liben: something that needs to be said. A lot of people I know won't listen to my program because they're not currently grieving or grief sounds like a downer. It is. I don't want to take that away, but what we try to do is to celebrate lives of those who are not with us. Often we share memories that make us laugh and giggle and chortle. generally we have a good time, which is like you said, in Congress for a show about grief, but there it is. 

Anna Jaworski: What I love about our program, which is called bereaved but still mean friends, is that we have learned that grief shared is divided and joy shared is multiplied.

Anna Jaworski: So we don't mind sharing tears. Because we know that we're in a safe spot with friends, and we know that sharing that grief makes us feel better. And then Michael always makes us laugh, so that always makes us feel good too. 

Michael Liben: Man, that's [00:05:00] part of my job description. 

Anna Jaworski: It is definitely part of your job description.

Anna Jaworski: Thanks for being here today, Michael. I appreciate it. 

Michael Liben: My pleasure. My pleasure. 

Anna Jaworski: Next we have a dear friend of mine who was in season one and multiple times since season one. That is Rita Rita, would you unmute your mic and talk to us about who you are and what your relationship is to CHD?

Rita Scoggins: Hello, Anna. I've been. Involved with your show for a very long time. How many years is it now?

Anna Jaworski: Eleven years. Can you believe it, Rita? 

Rita Scoggins: Oh, I can't. And of course, I knew you long before that through the listservs we used to have to use to communicate. 

Anna Jaworski: Which is also where we met Michael. 

Rita Scoggins: Yes, definitely. I am the mother and grandmother of CHDRs. My daughter was born with pricuspid atresia [00:06:00] and my granddaughter was born with PAPVR.

Rita Scoggins: However, we didn't know about her heart defect until she was 18 years old, 17, 18, and she had to have open heart surgery for that, so that was quite a shock for us. 

Anna Jaworski: It was, and I was fortunate enough to have all three of those lovely ladies on Heart to Heart with Anna and we actually talked about that.

Anna Jaworski: So I can put that link to that show in the show notes because it was a really good episode. 

Rita Scoggins: Yeah. 

Anna Jaworski: It was. You've been on a lot. We've talked about a lot more than that on the show. 

Rita Scoggins: Yes. I've been involved in the heart world for quite a long time. 

Anna Jaworski: she? That just doesn't seem possible.

Anna Jaworski: I know. Yeah, can 

Michael Liben: I just say, well, out of that, because when we met on the listserv, I think she was a teenager. 

Yeah. You sent me 

Michael Liben: a photograph of the family in snow in front of your house. 

Rita Scoggins: Yeah. 

Michael Liben: And she was this thin [00:07:00] little teenage kid having fun. And I can't believe that's 41 years old now, because it just doesn't compute.

Anna Jaworski: Oh my gosh. 

Michael Liben: Yeah. 

Anna Jaworski: I first got online 28 years ago, and you were one of the first people I met, Rita, and you gave me so much hope because at that time, I didn't know any other single ventricle kids that old. Most of the people I knew, they were still like my child, a toddler or babies.

Anna Jaworski: Most of the people I knew actually had children younger than mine. Wow, what do you want? I'm happy to have you here. And I was sad to learn that your granddaughter also had a heart condition, but I was so proud of the way she handled it. What a pro! 

Rita Scoggins: Yeah she's quite involved . She's in nursing school.

Rita Scoggins: She'll graduate in May, and yeah, she's been very good about explaining everything, going to different [00:08:00] classes that her professors have invited her to inform the students about CHD and her experience. So I think that's good. She's spreading awareness. 

Anna Jaworski: Absolutely. And then we have Amy Earhart, who was also here for the episode in September.

Anna Jaworski: So welcome, Amy. Can you tell us about your relationship to CHD? 

Amy Erhart: Hi, thank you for having me. Yes, I was born with hypoplastic left heart syndrome. And actually on Saturday the 19th, I will be turning 42. So super excited to celebrate my birthday every year, I just feel it keeps getting better and better.

Amy Erhart: I had a very wonderful childhood. Growing up was fantastic. My parents were great to me, my family, friends I would say like skipping to adulthood. I am an extremely healthy HLHS patient. I [00:09:00] work out pretty much five days a week. 

Anna Jaworski: Wow. 

Amy Erhart: Yeah, going to office visits is fantastic. The motto is if it's not broken, don't fix it.

Amy Erhart: So things have been status quo for a really long time. Raising awareness through a fundraisers back in my hometown, we just raised 18, 000. Through a fundraiser called put around Kaleida, basically it's where small businesses come together and they each build their own putting green. We get donations.

Amy Erhart: We had so many different things for the kids to do. It was really just a family fun day and we raised a ton of awareness and funds, and then we were able to donate those . So things have been fantastic. Recently started a podcast of my own for CHD awareness. It's just been amazing. And I got to meet you along the way.

Amy Erhart: So that's also been very fantastic. 

Anna Jaworski: It has been fantastic. And Amy's been on my show, so I'll have to put a link to that episode as well in the show notes. So all of you can learn a little bit more about her, but [00:10:00] for those who haven't heard the show before, can you tell them how your HLHS has been handled?

Anna Jaworski: Yeah. Surgery 

Anna Jaworski: or transplant? 

Amy Erhart: Yeah. I was very lucky born in 83. The only surgery that I've had to have thus far. Was in 87 and that was the Fontan procedure and in 2009, they thought I was going to have to have a revision. Thank goodness. It did not happen. And since then, I've been very healthy.

Amy Erhart: I had my first pacemaker at the age of eight. And then in 2017, I had a pacemaker placed for atrial leads. And with medication, everything has just been fantastic. I have been so lucky and blessed that I have not had to go through a lot.

Anna Jaworski: It's so wonderful to hear. And as a heart mom, and I'm sure Rita, It's a hard question. I can attest to this. And Michael, as a heart dad, this is what we wanted to hear. That our kids who were born with funky hearts could live a happy life and wouldn't constantly be in the hospital. I wouldn't [00:11:00] constantly be faced with.

Anna Jaworski: Difficult decisions to make regarding their care. So you're the poster child for what we wanted. 

Amy Erhart: Well, thank you. Thank you. it feels so good to be that and see that. I don't think when you're younger you understand the gravity of what it means to get older. And, as you get older, it's just every day.

Amy Erhart: Granted you have your ups and downs, right? But every day it's something to be thankful for. 

Anna Jaworski: Yeah, I agree a hundred percent. 

Thank You to Our Newest Sponsor!

Anna Jaworski: I'd like to take a brief moment to thank our newest Heart to Heart with Anna sponsor.

Anna Jaworski: Thank you HeartWorks. And for those of you who don't know about HeartWorks, it's a nonprofit organization whose mission is to find a cure for congenital heart defects. Stay tuned because later this year we'll be doing a future episode with them where we can learn more about them and especially about a new project they have that's going on.

HUG Disclaimer

Anna Jaworski: As most of you know, Heart to Heart with Anna is not intended to be [00:12:00] a substitute for professional medical advice, diagnosis, or treatment. This is just a live discussion by members of the CHD community, and the opinions expressed in this episode are not those of Hearts Unite the Globe, but of the host, who is me, and my guests.

Anna Jaworski: Thanks. 

Today's Discussion

Anna Jaworski: Our discussion today is to help us learn a little bit more about safety issues during the holidays, especially when you have a congenital heart defect. We are recording this episode in October and in the month of October in the United States, Halloween is a big deal. Children in our country often dress up in costumes.

Anna Jaworski: They go trick or treating from house to house or attend Halloween parties. Never since my kids were little, it was common for churches to have special events for children. Sometimes instead of Halloween, they would call them harvest festivals or something else if they didn't like Halloween. And there are a number of religions that don't practice Halloween. [00:13:00] So it makes sense that they would have a harvest festival instead.

Anna Jaworski: A lot of people, when my kids were little, which was over 20 years ago, we're not as keen on going trick or treating because there were stories for decades about people putting razor blades in apples or tainting The goodies somehow and so going door to door was not as popular when my kids were little as it was when I was little and Michael I would love to know about when you were little in New York if you went trick or treating as well and you too Rita because we're the parents here in today's session We're the older ones so let's start by talking about safety issues, especially regarding Halloween.

Anna Jaworski: What do you do to stay safe during Halloween? And do you have any tips or tricks that you can share with my listeners? I want to start with you, Michael, because I know you have a story here. I remember growing up in New Jersey and [00:14:00] going trick or treating.

Michael Liben: It was wonderful. We went trick or treating. 

Anna Jaworski: It was cold. I remember having to wear a coat over my Halloween costume and being so mad because nobody could see my Halloween costume because I had my coat over it.

Anna Jaworski: Did you experience that too?

Michael Liben: It was fun. It was great. It was chilly. We had a couple of things. My neighbor around the corner, his parents every year would set up this huge vat and boil hot dogs and they were unlimited. And so we all went over there and paid that on the hot dogs.

Michael Liben: We went from place to place with relative safety I had one nasty neighbor who would not donate to UNICEF because he was convinced we were all stealing it. If you remember, UNICEF had those orange boxes and we were asking people to put in a penny. School gave out this box that you had to put together and it was for UNICEF and we were asking people for a penny And the boxes would come in pretty heavy We [00:15:00] trick or treated; we got candy.

Michael Liben: There was always some story about the weird neighbor on whatever Street, but nothing ever panned out. We heard all the rumors about evil things Like the razor blade scam and all the other stuff, but most of the time we just said, that's not here. That's somewhere else. We don't do that. And it was great until, we just got too old to do it.

Michael Liben: It was a lot of fun. 

Anna Jaworski: Yeah. 

Michael Liben: It's not a holiday I would celebrate now, 

Anna Jaworski: Would you not celebrate it because you're in Israel now instead of in New York? 

Michael Liben: It's not a Jewish holiday, All Saints Eve has nothing to do with us. We loved it as kids because we loved the candy and we didn't pay much attention to anything else. But here in Israel, american immigrants with small children might have a party. 

Anna Jaworski: Okay. 

Michael Liben: Yeah, they might have a party. They might set up some trick or treating in their building just to give their kids the experience of doing that. But it's not really a big thing here. We don't really have it. 

Anna Jaworski: Okay. So for those of you who don't know, Michael was raised in New York, but he did Aliyah to Israel.[00:16:00] 

Anna Jaworski: Gosh, you were in college, right? 

Michael Liben: No, actually my junior year in college, I spent a year here studying and then I went home to finish and then in 1981 I came back and I've been here pretty much since. It's been a long time. 

Anna Jaworski: Yeah. So tell me what Halloween was like for you, Rita. 

Rita Scoggins: Back in the dark ages my first memories of Halloween I lived in Cleveland, Ohio, and I was four or so. 

Michael Liben: Did they have candy then? 

Rita Scoggins: Yes, they did.

Michael Liben: Oh, okay. 

Rita Scoggins: So we dressed up and we went trick or treating and I imagine it was cold, but I don't really remember. I remember the plastic masks we would wear, 

Anna Jaworski: oh my gosh, weren't those awful? 

Rita Scoggins: They were so horrible. 

Anna Jaworski: They were so horrible. Yes, I remember. 

Michael Liben: I had the one 

Michael Liben: with the moving jaw. So we would like to talk.

Anna Jaworski: Oh, we never had those those were much more. 

Michael Liben: The moving 

Michael Liben: mouth mask. 

Rita Scoggins: And then the costumes, they were all [00:17:00] plastic and, I don't know, some kind of itchy other material. 

Anna Jaworski: I never had it close to my skin because it was always cold, so I always had a t shirt and a shirt, and then the little plastic costume, and then my coat over it, so everybody could see the plastic costume anyway.

Michael Liben: They were very flammable. 

Anna Jaworski: Yes, they were. And that's probably why they don't make them anymore. 

Rita Scoggins: We moved to Houston, and then it was hot. That's probably why I don't remember being cold. 

Anna Jaworski: I want to ask the parents, since all three of us had children with CHD, after you had a kid with a CHD, did you treat Halloween differently, or did you do the same thing with your CHD or that you did with your other kids? 

Rita Scoggins: Same thing. We were told to treat Victoria normally, naturally, the way we treated our other kids, and that's what we did.

Anna Jaworski: Yeah, us too. What about you, Michael? Same thing. 

Michael Liben: My kids [00:18:00] never experienced Halloween. They were all born in Israel. However, had we done that before Leo was born, we would have. We have done it with her because we did everything the same as much as we could. We have similar advice from the physicians.

Michael Liben: I remember just after she was born and just after she was diagnosed she had a cold. And I called her cardiologist. He said, what are you calling me for? She has a cold. Call her regular doctor. Treat her like a regular kid. It hadn't occurred to me that she could be a regular kid. So yeah, we would have probably done it the same.

Anna Jaworski: We did too. 

Rita Scoggins: The difference was By that time in history, we would always check the candy 

when it 

Rita Scoggins: came in because, things had happened by then that made you cautious. 

Anna Jaworski: And that's fair. We made changes, too, compared to when I was a kid growing up.

Anna Jaworski: I only took my kids trick or treating to neighbors that I knew. We didn't go to complete strangers. When I was a kid, you [00:19:00] just walked along the street. You may not have. known all of the people that you went to, but by the time I had children, we only went to people we knew. And, the churches had started to do those festivals and we always ended up going to those because they were so much fun. Now I want to talk to the CHDers and I want to know how they treat Halloween and if they have any special tips or tricks for staying safe during Halloween Amy, I'm going to start with you. Because you're the oldest young person here.

Amy Erhart: Yeah. So honestly, growing up, my parents were the same way. I appreciate parents who say they treated their CHD kid like they're normal children. It hurts my heart to hear that so many are restricted so often. I grew up very normal. So I have no restrictions growing up.

Amy Erhart: I would say, it is the season, right. To get your flu [00:20:00] shot. But beyond that, life was fairly easy. When it comes to germs and things like that, I feel my parents would have done the same thing all around. , there was nothing odd or, Fantastic or anything. I grew up in a very small town so trick or treating, we went to every single house and lot of times we trick or treated by ourselves as well. So that was also very fun and different. I think our community back then was probably a thousand people in our community. So we were very small. So yeah, It made things easy, I think. I so appreciate that. 

Anna Jaworski: And your parents let you go alone. 

Amy Erhart: Yes. I'm there was one 

Anna Jaworski: age. 

Amy Erhart: Oh, I would say. I think I would say grade school, we were probably fourth, fifth, sixth grade. Everybody in the community was out though. So people would come up town and everybody was out. You would be out with friends.

Amy Erhart: It would be that age all the way up until your high [00:21:00] scores. It's very interesting because it probably does sound a little, oh my goodness, but the smallness of our community back then, to be honest, kids still run around today. So it's just a tight knit community. And I couldn't have asked for more.

Anna Jaworski: I love that. I absolutely love that. I hate it that we feel like we have to be so overprotective of our kids. It's interesting because I've been watching house on our international with my husband. That's our guilty pleasure at night. You see these other communities in these other countries, and the children seem to have a lot more freedom.

Anna Jaworski: It feels like we have become a society that is extremely overprotective of our children. And it's understandable, you don't want anything bad to happen to your kids, but I think it's so restrictive.

Anna Jaworski: I wish we all lived in little neighborhoods, like what you're talking about. Yeah, 

Amy Erhart: that was truly the beauty for [00:22:00] sure. Yeah. 

Anna Jaworski: Okay, Rachel and Ashley, I'd love to hear from the two of you if either one of you have something to share about, Growing up with the CHD and how you dealt with Halloween

Rachael Gott: for me, like everybody else, my mom treated me normally.

Rachael Gott: Both my parents did. We didn't know about it when I was a baby. So you can't really, act accordingly, but I was never singled out or treated differently when it came to Halloween. 

Anna Jaworski: But you'd also didn't really CHD for quite a while, right, Rachel? 

Rachael Gott: Correct. Yes. 

Anna Jaworski: And what about you, Ashley?

Ashley DeMarco: I mainly did special events or Halloween parties with preschool, kindergarten, . I did go out and did trick or treating normally. But was always getting tired easily. My speech was not there because I had a stroke as well.

Ashley DeMarco: So parties were my main thing of pumpkin patches, carving [00:23:00] pumpkins. Making treats, projects, and stuff. 

Anna Jaworski: See, that's good to hear, though, because not everybody is going to have kids out there who have CHDs that allow them to live a completely normal life. And it's nice to know with a few modifications, you can still have fun.

Ashley DeMarco: Yeah, 

Anna Jaworski: . Thank you for sharing that. That's good. 

Ashley DeMarco: Yeah, I wasn't really big on Halloween stuff, more like dressing up in costumes were bigger to me, meaning having fun with that, not really candy as much. 

Anna Jaworski: Yeah, I hear you. I hear my mother was very restrictive.

Anna Jaworski: We could go out and do the trick or treating, but we were only allowed a certain amount of candy every day. And my sister used to take some of the Halloween candy. My mom's not alive anymore, so I can tell the story. But my sister used to take it. She used to hide it under the bed, so my mom wouldn't know, so she could have more candy throughout the year.

Michael Liben: I'm shocked. I'm shocked and stunned. 

Anna Jaworski: You don't know my [00:24:00] sister. My sister was a little stinker. 

Michael Liben: I'm shocked. 

Ashley DeMarco: I like hearing your stories and then my stories as younger trick or treaters. It wasn't much of candy being out doing that kind of stuff. It was more like being with friends and decorating and doing all that kind of thing instead.

Anna Jaworski: It's just probably a lot healthier for us to focus on that instead of just the candy. How many Mounds bars can you eat? 

Ashley DeMarco: Yeah. 

Michael Liben: Oh, you'd be surprised. Sometimes you feel like a nut.

Michael Liben: Sometimes you don't.

Send Us Your Feedback or Ideas!

Anna Jaworski: Friends, I love it when you all give me feedback on heart to heart with Anna episodes. It helps me to improve programming for you and to make sure that I'm doing what you want to hear. Please send me messages on Facebook or Instagram or LinkedIn.

Anna Jaworski: You can also send me through old fashioned email, Anna at heart to heart with anna.com. Or you can also send one on the Hearts Unite the [00:25:00] Globe website. We actually have a form right there that you can fill out. So visit heartsunitedeglobe. com and you can fill out a form there as well. 

Audience Sharing Time

Anna Jaworski: Now we are back for the last segment. This has gone way too fast. We've had a lot of laughter and shared some really fun stories, but now I would like to invite my audience members to share a favorite episode or make a comment about an episode you've heard recently or to suggest I'm going to be talking about a future topic for a heart to heart with Anna episode .

Anna Jaworski: Last month, when we did this, we got so many fabulous ideas for episodes. I am super excited about that. Who would like to go first and comment on an episode or make a suggestion for a future episode.

Anna Jaworski: Yes, Michael. 

Michael Liben: I guess it's no secret, about a month and a half ago I had heart surgery. I had a valve replacement and a bypass. I wish Liel were here [00:26:00] to see that I have the scar that she's always had. And I would wonder what the relationship would be between kids who went first, and parents who went second, and if there's something there that bonds them.

Michael Liben: Because we shared something that nobody has. Now I can't ask her, she's been gone for almost 12 years, but I would love to see her reaction because she was autistic and also not, I would just want to know what she would think and say, I got one of those and we could share memories, stories, I don't know, something.

Michael Liben: And it's possible, now for you to find CHT kids who are old Talk about that and maybe find a parent who's had surgery and can see how that works out between them. 

Anna Jaworski: I love that suggestion. Oh my gosh, that is such an awesome suggestion. It's interesting because a couple of years ago I did an episode with a father.

Anna Jaworski: Who got a tattoo that looked exactly like his daughter's scar, because he didn't want her [00:27:00] to be the only one who had a scar on her chest. And I actually interviewed that father, it was the Bakke family, and, , They're part of the heart community collection group. And it was a really interesting episode, but he didn't have a scar like you do.

Anna Jaworski: You have a legitimate scar that is just like what Liel would have had. So I love that suggestion. And 

Michael Liben: I got a score and I got a bunch of poke holes. We could trade stories. 

Anna Jaworski: Oh my gosh, 

Michael Liben: I went second, and I wish I could talk to somebody about that. 

Rita Scoggins: Yeah, victoria's godfather had to have heart surgery after they already had a relationship, but they became members of the Zipper Club together. For Victoria was neat to see that somebody older had a scar like hers.

Anna Jaworski: Did the Godfather ask her any questions about having had the surgery or when he was preparing for the surgery or was there even time for that? [00:28:00] 

Rita Scoggins: There was no time for that. It was, emergency. Yeah. 

Anna Jaworski: Yeah, but that might be interesting to have the two of them.

Anna Jaworski: We should put feelers out though and see if there's anybody else. 

Anna Jaworski: Oh, I'm sorry to hear that. Wow. That's an excellent question, Michael. That would be a fascinating show, especially if the child is old enough to be able to verbalize. How they feel and what it feels like to them to see someone else they love having the same scar that they do.

Anna Jaworski: I think that's fascinating. Okay, that is a must do show. Now we just have to find the guests. It'll be interesting to see who comes forward with that because I think that is fascinating. Hi Ashley, us what you have to say. 

Ashley DeMarco: I was I grew up going to heart camp and I didn't know anybody else until I went to heart camp and met people with CHD 

Anna Jaworski: right. And that's a great way to meet [00:29:00] others and to not feel alone.

Anna Jaworski: You didn't have anyone else in your family who had a scar like that. 

Ashley DeMarco: Nope. Nope. Yeah. 

Anna Jaworski: was the same way for my kiddo. We didn't have anyone else in the family either. All the grandparents had not had heart attacks or had any heart issues. So, Rita,

Anna Jaworski: you have another suggestion, Rita? 

Rita Scoggins: I was going to comment on a show that we did.

Rita Scoggins: I can remember it was quite a few years ago, and I was in the car. We were driving in California. And we did the show with me on it from the car. I'll never forget that one. It was just interesting.

Michael Liben: Our roving reporter. 

Rita Scoggins: Yes. It was Michael and you and me. 

Michael Liben: I remember that. 

Rita Scoggins: Yeah. It 

Anna Jaworski: was another live [00:30:00] show that we did.

Anna Jaworski: Do you remember Michael? 

Michael Liben: I remember Rita from the car. I absolutely remember that. 

Anna Jaworski: Yeah, that was another live show. And if I'm not mistaken, I was on vacation when we did that as well. And I was in a coffee shop. So nobody was where they were supposed to be except for Michael. 

Michael Liben: I'm never where I'm supposed to be.

Anna Jaworski: That's true. Yeah, but that was back in the day when doing a live show was terrifying. This isn't quite as terrifying because even though I'm doing it live, I'm not broadcasting it right this minute, friends. I will be editing a little bit, but it was, I think 

Rita Scoggins: that one Wasn't it? 

Anna Jaworski: It was really live because when I was using a different studio, so we didn't have zoom back then.

Anna Jaworski: That's how long ago that was. We did not have zoom. I was using blog talk radio to create the podcast and they had a Feature where you could do it live. And as you were recording, it was [00:31:00] going out on airwaves, which lent itself to many opportunities for problems many opportunities for problems. And if there was a problem that could be had, I had it while doing a live show.

Anna Jaworski: And that's why I stopped doing live shows as it was not. Oh my gosh, I don't know, we just didn't even get the kind of interest that I thought we would get and we had a couple of people who called him that were inappropriate. They were talking about acquired heart disease and trying to promote their products instead of being focused on congenital heart disease.

Anna Jaworski: I stopped it, but this is really fun to have a studio audience like this and just get a chance to talk to people. For me, this has been a lot of fun. We're not going to do any episodes in cars, though.

Anna Jaworski: Although, you never know. If somebody comes to one of these live shows, they could be in their car, that would be interesting. Okay, Ashley. 

Ashley DeMarco: I have a [00:32:00] lot of friends that are, curious about HeartStuff, if that would be, a thing of friends of a non CHD not knowing and explaining and figuring that out would, I don't know, if that would be something.

Anna Jaworski: I've never done a show like that before, that would be fascinating if we could have. 

Ashley DeMarco: Yeah, of how their perspective on CHD is. 

Anna Jaworski: Yeah. 

Ashley DeMarco: Yeah. 

Anna Jaworski: And what questions they have but maybe they're afraid to ask. 

Ashley DeMarco: Yeah. 

Anna Jaworski: That would be good. How would I find those guests? No, that would be great. I would just need help in finding those guests.

Ashley DeMarco: Yeah. 

Anna Jaworski: Yeah, I really like that idea. 

Ashley DeMarco: I was friends with people and they've left because of this and they didn't want to deal with it. Maybe teaching them and learning So I've been going through a lot of that if I've lost Friends because I've gone through so much and it's never consistent and I'm never There.

Anna Jaworski: Had a [00:33:00] guest host once who did a show called Compassion fatigue it was a really good show. It was actually a heart dad that did it. Chris Perez was my guest host and he did an excellent job. And he talked about what compassion fatigue is, which I had never heard of before, but it's where people get worn out, being worried about and caring about somebody else.

Anna Jaworski: And yeah, they can't handle it. And so what do you do for that? And in his episode, he actually talked to somebody who discussed what compassion fatigue is and how to handle that. I think your idea of having friends who have friends Who are not affected by CHD, but know somebody who has a CHD and questions that they may have that they're afraid to ask and maybe even share some experiences that they were confronted with certain situations [00:34:00] and didn't know how to react to it.

Anna Jaworski: I think a lot of times people will avoid experiences. But there are other times where they feel like they may look stupid or that they just don't understand. They don't want to say the wrong thing. Michael has a million stories about this dealing with grief where you lose friends. When you lose a child because they just don't know how to handle that and I imagine Seeing you go through needing a pacemaker or a pacemaker surgery or oh my gosh she's changing medications again. 

Ashley DeMarco: Out of, I'm always in and out of the hospital and never there. This happened back in October of last year of how I lost my friends because I was really sick and I never could recover from that. So that's how I lost that group. of people, of friends. 

Anna Jaworski: And that's so hard because it's not bad enough that you're going through a major medical crisis, but then you lose your support group. 

Ashley DeMarco: Yes. And how to get that back from other ways [00:35:00] or 

Anna Jaworski: And that's a different show. 

Anna Jaworski: That's a totally different show. 

Ashley DeMarco: That's totally different, but yeah, it'll be something, yeah. 

Anna Jaworski: That would be a really good episode to do. I know you're not the only one. That happens to people in a bereaved community as well, and in a way it's a form of bereavement because you've lost your health and then you've lost your friends on top of it. So it's a lot of loss. Michael, 

Michael Liben: If you're a parent of a CHD child, you can lose your friends if you talk about your kid too much. You walk in the room, they just, Oh, it's him. It's a real thing. It's a real thing. 

Rita Scoggins: I don't want to hear it anyway. Okay. 

Michael Liben: They get tired of hearing it, you know, 

Rita Scoggins: I think a lot of people don't want to face that kind of thing and it makes them uncomfortable that you have to face it.

Michael Liben: Quite possibly, quite possibly. I also think that I can overtalk it, but Liel became my calling card. I'd walk into a room and say, hi, I'm [00:36:00] Michael. My daughter has a CHD. And it was identifying myself through her and that is understandably difficult on friends. And I didn't lose too many friends, but I could tell that they were tired.

Michael Liben: They were tired. 

Anna Jaworski: That's that compassion fatigue again, 

Michael Liben: yeah, I remember that episode 

Anna Jaworski: about yeah Oh, chris did such a good job 

Michael Liben: That was the first episode. I heard the guest was pastor dan who later was on our show On buriba still may and he talked about compassion fatigue and caregiver burnout and It's real, but it's also vicarious I may or may not be burned out, but my friends get burned out by hearing about it all the time.

Michael Liben: And that's something you have to watch out for. 

Rita Scoggins: don't really share all that much about Victoria with my friends or, with my close friends, probably, but not with my friends that aren't close. 

Michael Liben: [00:37:00] I understand that. 

Anna Jaworski: Yeah, it's interesting because when I created my Facebook page, I created a Facebook page for family and high school friends, college friends. And then I created a separate Facebook page for my part friends, because I I could talk about hope with them. it's like Michael said, I knew my friends and family would probably get sick of hearing me talk about CHD all the time and they would get compassion fatigue. So I just had two separate pages and then something happened and I can't get into that old page.

Anna Jaworski: So I ended up having to blur it together.. I haven't lost that many people, but I actually have lost a couple of people who unfriended me and I wonder if that's why they unfriended me because they can't handle all the CHD stuff. That's mostly where I spend my time. 

Ashley DeMarco: It's not like as coming from a patient herself of you can't just walk away from it.

Ashley DeMarco: It's life . 

Anna Jaworski: [00:38:00] Exactly. 

Ashley DeMarco: And you have to keep going for it. And it's not. 

Rita Scoggins: And as a parent, it's the same thing. Yeah, 

Ashley DeMarco: exactly. Yeah. Yeah. Yeah. You can't just say, I'm going to break. I want to break with this. No, you can't. You wish, but no. No, but I think that's what's the artist of other friends of not understanding and just wanting it to be okay.

Ashley DeMarco: And I've had friends of, if I would just get better, then I could just be more happy, be more present, but that's not how life goes in this. CHD world. Yeah. 

Anna Jaworski: Thank you for sharing that with me, because you're the first person who has suggested that specific type of show, and I think that would be really good.

Ashley DeMarco: That's something I'm actually going through right now, is why. That's what's happening. 

Anna Jaworski: Oh, I'm so sorry. 

Ashley DeMarco: Yeah. It's all good. 

Anna Jaworski: You know what? It's not all good. But if we can inform people, if we can educate people, because I think that's a big [00:39:00] part of the problem is people don't know what to do and they don't know how to act.

Anna Jaworski: And let's face it, it's easy to be selfish. It's hard to be compassionate. It makes you vulnerable. And people don't like to be vulnerable. My producer has been so good at letting me know about my time. So that does conclude this episode of Hard Tart with Anna. I wanna thank all the people who took the time to be part of our live studio audience. And special thanks to my producer, Rachel Gott.

Anna Jaworski: Thanks for listening today, my friends. And thanks again to our newest sponsor, HeartWorks. We're so excited to work alongside you as we all envision a world without congenital heart defects, but until that time, remember my friends, you are not alone 

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