Heart to Heart with Anna

Jenny Muscatell: Heart Mom and Author

March 23, 2021 Anna Jaworski Season 16 Episode 300
Heart to Heart with Anna
Jenny Muscatell: Heart Mom and Author
Chapters
Heart to Heart with Anna
Jenny Muscatell: Heart Mom and Author
Mar 23, 2021 Season 16 Episode 300
Anna Jaworski

What lessons can we learn from our adult Heart Warriors?

Why might a Heart Mom write a book about her life experiences dealing with CHD?

How does a Heart Mom take her personal experiences to fight for others in the hospital?

Jenny Muscatell is a licensed social worker, blogger, author, photographer, and podcaster. She earned her Bachelor’s in Mental Health and Human Services through the University of Maine.

She has over two decades of experience in the social services field, specializing in crisis intervention, health systems, and end-of-life care. Deeply passionate about her work, Jenny is regarded as a fierce advocate, earning her the Child Welfare Rising to the Challenge Award.

Jenny lives with her husband Dan, and two daughters. Her first daughter Faith was born with Hypoplastic Left Heart Syndrome. Jenny shared her life experiences, authoring the Amazon Best Selling book, “The Journey of Faith and an Open Heart” and as a public speaker on multiple platforms.

Through faith-filled presentations, heartfelt written words, and photography, Jenny’s mission is to give voice to the vulnerable, hope to the hurting, and to make way for the unspoken to be told.

Link mentioned in this podcast:

Jenny's website

Anna's Buzzsprout Affiliate Link (if you'd like to try Buzzsprout for your podcast and get a bonus gift card -- and Anna will, too!)

Links to 'Heart to Heart with Anna' Social Media and Podcast Pages:

Apple Podcasts

Facebook
Instagram
MeWe
Twitter
YouTube

Website

Support the show (https://www.patreon.com/HearttoHeart)

Show Notes Transcript

What lessons can we learn from our adult Heart Warriors?

Why might a Heart Mom write a book about her life experiences dealing with CHD?

How does a Heart Mom take her personal experiences to fight for others in the hospital?

Jenny Muscatell is a licensed social worker, blogger, author, photographer, and podcaster. She earned her Bachelor’s in Mental Health and Human Services through the University of Maine.

She has over two decades of experience in the social services field, specializing in crisis intervention, health systems, and end-of-life care. Deeply passionate about her work, Jenny is regarded as a fierce advocate, earning her the Child Welfare Rising to the Challenge Award.

Jenny lives with her husband Dan, and two daughters. Her first daughter Faith was born with Hypoplastic Left Heart Syndrome. Jenny shared her life experiences, authoring the Amazon Best Selling book, “The Journey of Faith and an Open Heart” and as a public speaker on multiple platforms.

Through faith-filled presentations, heartfelt written words, and photography, Jenny’s mission is to give voice to the vulnerable, hope to the hurting, and to make way for the unspoken to be told.

Link mentioned in this podcast:

Jenny's website

Anna's Buzzsprout Affiliate Link (if you'd like to try Buzzsprout for your podcast and get a bonus gift card -- and Anna will, too!)

Links to 'Heart to Heart with Anna' Social Media and Podcast Pages:

Apple Podcasts

Facebook
Instagram
MeWe
Twitter
YouTube

Website

Support the show (https://www.patreon.com/HearttoHeart)

Jenny Muscatell: Heart Mom and Author

Tue, 3/23 10:08AM • 33:16

SUMMARY KEYWORDS

heart, people, write, book, Jenny, life, Faith, child, hypoplastic left heart syndrome, CHD, blessings, hospital, ventricles, valves, experience, Alexander, Anna Jaworski

SPEAKERS

Jenny Muscatell, Anna Jaworski


Jenny Muscatell  00:00

Life in general, no matter what the trial is, no matter what the struggle is, can be very hard and one of the things that makes it easier is having someone else to connect with.


Anna Jaworski  00:21

What lessons can we learn from our adult heart warriors? Why might a Heart Mom write a book about her life experiences dealing with congenital heart disease? How can a Heart Mom use her personal experiences to fight for others in the hospital? Welcome to "Heart to Heart with Anna." I am Anna Jaworski. Like today's guest, I am a Heart Mom. My son Alexander was born with a single ventricle heart in 1994. And he is the reason I am the host of your program. Today's show is 'Jenny Muscatell: Heart Mom and Author' and our guest is Jenny Muscatell. Jenny Muscatell is a licensed social worker, blogger, author, photographer, and podcast expert guest. She earned her bachelor's in Mental Health and Human Services through the University of Maine. She has over two decades of experience in the social services field specializing in crisis intervention, health systems, and end-of-life care. Deeply passionate about her work, Jenny is regarded as a fierce advocate earning her The Child Welfare Rising to the Challenge Award. Jenny lives with her husband Dan and her two daughters. Her first daughter Faith was born with hypoplastic left heart syndrome. Jenny shared her life experiences authoring the Amazon best-selling book, "The Journey of Faith and an Open Heart" and as a public speaker on multiple platforms. Through faith-filled presentations, heartfelt written words, and photography, Jenny's mission is to give voice to the vulnerable, hope to the hurting, and to make way for the unspoken to be told. Welcome to "Heart to Heart with Anna," Jenny,


Jenny Muscatell  01:56

Thank you so much for having me. I'm very excited to be here to talk with you today.


Anna Jaworski  02:01

I'm always excited to talk to another Heart Mom. So let's start by telling us when you discovered that your daughter had a heart defect.


Jenny Muscatell  02:10

Faith was born in 1995 and that was a time when technology was not as advanced as it is now. The prenatal ultrasound that we had labeled Faith 'healthy' and so when she was born, we didn't know right away that she was ill with a very serious heart condition. Certain signs and symptoms came up along the way and rather quickly but it actually took some time for the physicians to diagnose her.


Anna Jaworski  02:38

How long was it days or hours? 


Jenny Muscatell  02:41

Four months


Anna Jaworski  02:42

Oh, my goodness! 


Jenny Muscatell  02:43

It took four months. 


Anna Jaworski  02:44

Wow. 


Jenny Muscatell  02:45

So, unfortunately, because it did take four months, that led to a number of other complications. The doctors had actually said it was really very miraculous that she had lived with her level of defect for that long and in heart failure. But the body has a way of kind of adapting to itself. And she had developed some complications with her lungs as a result of just the added heart failure pressure on her lungs. And that led to some complications but it also is part of what saved her life. 


Anna Jaworski  03:15

Yeah. So she was four months old before she was identified. Then she was in congestive heart failure. I imagine then they did an echo and x-ray, what kind of tests did she have? What did they discover?


Jenny Muscatell  03:27

Well, for us, the first key was a chest x-ray. And it showed a lot of infiltrates around the heart and her heart was enlarged. But even still she always has appeared well, even when she's at that place of cyanotic lips and it's time to go in for surgery again. And you face another one of those surgical hurdles. She always on the outside looked well. I hear a lot of times people talk about what it's like to have an invisible illness. And she's definitely one of those people who is the epitome of what invisible illness looks like. She's always had a tan of some sort. She had that darker skin and that pale blue was always sort of hidden beneath that melanin. So when she went into the hospital initially, she still looked very good from the outside. But that x-ray revealed more and we were transferred to another hospital. We lived in a very rural area of Maine. We were in a place that didn't really have access to a lot of good medical care on a regular basis. So we were transferred to a different facility and they ran a number of tests and made the determination, which was the big moment of change in somebody's life when you think you have a healthy child before you, and then all of a sudden you're told you don't.


Anna Jaworski  04:46

Yes. It's shocking, isn't it?


Jenny Muscatell  04:49

To say the least. Ultimately, what does any mum want to do? Keep it from happening and we can't and so we grapple with 'but could I have?' And it's very easy, I think, as a parent to beat yourself up a bit about 'was there something that I could have done differently and in reality, there's not.


Anna Jaworski  05:08

No. I agree 100% with you, and so she's four months old, she's in congestive heart failure, her heart is enlarged. What was the final diagnosis?


Jenny Muscatell  05:19

So she was diagnosed with hypoplastic left heart syndrome. Certainly, that was something I had no awareness of what that meant whatsoever. It's a very complex condition. Her case was particularly complex; there wasn't really a part of her heart that was formed correctly, each valve had some sort of anomaly on it, both the atria and the ventricles had holes between them, her arteries and both pulmonary in her aorta were pinched and small, and the left ventricle was very small. The hole in between her top chambers, because it was so large, it was actually that anomaly which allowed her to live without intervention, as long as she had.


Anna Jaworski  06:02

Yeah, she sounds so much like Alexander. So she had what's called an ASD, or an atrial septal defect, which is a hole between the top two chambers. Alexander's bottom two chambers or ventricles, he had a hole between them. And it was so large that they pretty much said he had a single ventricle heart because it was just too big, there was no way they would be able to repair it. And that is what enabled him to live for two months without passing. Because most of these hypoplastic left heart syndrome babies, they pass away within the first 10 days of life if it's not diagnosed. But that's if they don't have a communication that allows the blood to mix and allows the babies to continue to live. I know it's kind of weird sometimes when your kids have so many things wrong, that some things kind of compensate for each other and allow the child to live. To me, that was a miracle.


Jenny Muscatell  06:54

Absolutely. And the ventricular piece as well, she had had a hole there, too. And as you know, with single anatomy, one of the things they do is connect those two ventricles in different ways so that they can work together to do the work that the heart load needs to complete. And it was nature's way in a sense of having that happen preventatively.


Anna Jaworski  07:16

It's amazing. Yeah, I think it is amazing how some bodies will do what they can to compensate, it almost makes you feel like there is such a strong will to survive. And I think there's a lot we don't know about how the human body works. I think we still have as many questions as we do answers, but let's talk about some of the surgeries. I was reading that she has had eight different surgeries. What kind of surgeries has she had?


Jenny Muscatell  07:43

When Faith was an infant, she first started out with actually a Damus-Kaye-Stansel Procedure. It unfortunately failed and she had to go back in four days later and have it revised into the fashion of a Norwood. And then in a couple of years after that, at the age of two, she had a bi-directional Glenn. And at four years old, she had a valvuloplasty. And she wasn't really a candidate for a Fontan Procedure. She'd had too many high pressures in too many different areas of her heart. But she just wasn't a candidate and they felt very strongly that if she would have it that it would fail. And so there was a lot of years of her life where we were told several times to take her home to enjoy the time that we would have with her because they were out of options. And we were told that with the Glenn usually those procedures are done by the age of four. But she just simply was not a candidate to go beyond that. And so she had her Glenn anatomy up until second grade. She had all of those opportunities to do some of the things that other kids did. And that was really wonderful. And the Glenn procedure allowed her all of those moments and allowed her to become a big sister and to just kind of live life as a child for a very long time without an intervention. In second grade, she had been presented to Boston Children's Hospital several times, but most of those times we would come back with the same information of there's not really much more that we can do at this point - until one day when she was about eight years old, her specialty surgeon had decided that he was going to try a biventricle repair on her. So she's actually one of the first, if not THE first biventricle repair that's happened on a hypoplastic heart and it was really scary to try something new, but it also felt very right. And we moved forward and it was a huge procedure. They kind of took down everything that they had ever done in one setting and put it all back the way that it's supposed to be routed and patched up anything they took out and repaired every little detail of her heart. And then she did very well with that for a lot of years. In eighth grade, she developed a subaortic stenosis and had to go in and have that removed. And then the one thing that was always kind of knocking at the back door was her valves. And their goal was to keep those valves intact in their original form with some touch-ups here and there until she was fully grown because they wanted to replace them at some point. I think as a parent, we hope and pray that valves last beyond the warranty, or that the surgical repairs last beyond the warranty. For us that time did come and it came right after her senior year of high school. She graduated, and three days later, she went down and had surgery number seven. She had a valve repair and a valve replacement. And six weeks after that one of those valves de-hissed (dehiscence) then she had to go back in and so she ended up with two repairs. And now she's been doing very well for - well, since 2014. 


Anna Jaworski  11:01

That's amazing. We have watched the field of pediatric cardiology evolve, haven't we?


Jenny Muscatell  11:07

It is incredible and we have watched it, but also experienced it firsthand.


Anna Jaworski  11:14

Yeah, absolutely. I think your daughter's one of the pioneers isn't she?


Jenny Muscatell  11:18

And she is. Really all of these kids are, in a sense, because they're always improving and always coming up with a new method or a new detail and even just cardiac preservation. They have injections that they can give you while you're in cardiac surgery that help preserve your cells so that they're not damaged while you're on the bypass machine and they're working. People are retaining their heart function. My daughter's ejection fraction is almost 60%, which is quite normal. She still has different anomalies that impact her hemodynamics a bit but the actual function and strength of her heart is good. And that's after eight surgeries.




HomeTonightForever 12:05

Home. Tonight. Forever by the Baby Blues Sound Collective. "I think what I love so much about this CD is that some of the songs were inspired by the patients," (Anna Jaworski) "Many listeners will understand many of the different songs and what they've been inspired by. Our new album will be available on iTunes, Amazon.com, Spotify," (Dr. Gil Wernovsky) I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects." (Anna Jaworski) "Enjoy the music," (Dr. Gil Wernovsky). Home. Tonight. Forever.


Disclaimer 12:39

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.


Rejoiner  13:01

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


Anna Jaworski  13:19

Before the break, we were getting to know Jenny and discovering how she became part of the CHD world, but in this segment, I want to talk to you about your book, Jenny, "The Journey of Faith and an Open Heart." Can you tell us how it is that you came to write a book?


Jenny Muscatell  13:35

Well, for me personally, actually, my faith in God, I felt very called by Him to write this story down. As we talked about earlier, when Faith was born, there wasn't a lot of technology, there also wasn't a lot of connective technology. Today there's programs like your show, and groups that people can join on Facebook and Instagram where you can actually connect with other people all around the world and so you're not alone, in a sense, and what you're going through. There's resources out there. And when Faith was a baby, those resources weren't there. And so I did feel very isolated and alone and like there weren't a lot of people who would understand what we were going through. So when I did meet somebody who had the same experience as us or similar experience, it was such a pivotal moment to have that silent understanding with someone else who understood and life in general, no matter what the trial is, no matter what the struggle is, can be very hard. And one of the things that makes it easier is having someone else to connect with. And that's part of why I wrote a book and I wrote it in its truest, most honest, most real form because I could talk all day long about the many blessings in my life, and believe me, I do. And I could tell you about the good things that we have going on, but what's really connecting people. And what really will connect us, in general in this world is when we talk about our struggles - when we say, "This is how I got through this, how did you do it?" People need that. And they need that connection. And so I felt very called to write our story out in its most vulnerable detail to just invite people into that experience in a way that would allow them to see how we got through it without telling them what they needed to feel because everybody's situation is different.


Anna Jaworski  15:30

Right. What was the most important lesson you learned in writing your book?


Jenny Muscatell  15:34

I would say that life is hard, but also very beautiful. And there's a lot of things that we go through as Heart Moms, that we don't even have time to process on our own. So when you're writing a book, you're really reliving every detail and capturing it in its finest exquisiteness. You're revisiting every sense, every vision, every smell, every feeling and emotion that you've had. And then you look back and you realize, 'Oh, my gosh! We really did overcome all of those things. And we really did do the best that we could while we did that.' And I think for me, that biggest lesson was, it's good to pause, it's good to look back over all that you've gotten through because that alone can remind you that you can get past or get through things that you might face in the future.


Anna Jaworski  16:30

I think that's so important. I agree 100%. It is important to pause. We can get so wrapped up in the immediacy of what it is that we're dealing with and a lot of times it will be emergency-type situations and you're running on adrenaline for days on end. It gets to be so wearing, doesn't it Jenny?


Jenny Muscatell  16:53

It does. And when you jump to the next thing, the next thing, the next thing and for moms and dads, one of the things that we are constantly doing is a list of to-do's we have to do the normal things. We have to make dinner, get kids off to school, pay the bills, go to work, they pile up. And when you add a crisis onto an already busy schedule, it's very easy to just breeze past it and put out the fires and it's so important that we just pause, breathe, rest, recuperate, and process everything we've been through.


Anna Jaworski  17:26

And I think it's hard to process things sometimes. I know for me, there was a lot of time that I was just on autopilot. Like you said there were other things to do. For me, Alexander was my second child. So I had a child three years older than him at any time going through this vicariously with his brother. And there was my concern about how was this going to affect Joey as well as how things were affecting Alexander. You had a daughter after you had Faith. So you were experiencing the same thing on the opposite end. How is this going to affect the little sister? And I think we can get so wrapped up in just trying to, like you said put out the fires and keep things going that we do kind of lose sight of what we're doing. And I don't think we necessarily appreciate how strong we can be and how strong we've been.


Jenny Muscatell  18:15

Absolutely. And I think it's easy for us to think we're not strong because we feel so broken. You know, when things are going on and you're going through it people will say, "You're so strong." And I really love that and I appreciate it. And I know people are trying to help but sometimes I would think in my head, 'Oh, honey, you... (laughter)


Anna Jaworski  18:35

...don't get it.' (laughter)


Jenny Muscatell  18:37

Oh, my goodness, I'm falling apart here! 


Anna Jaworski  18:39

Yeah 


Jenny Muscatell  18:40

But we do overcome these things. And even if we're not feeling strong, if anything - gosh, we're brave!


Anna Jaworski  18:47

Yes. Because we have to be. It's not like we have a choice. We have to do everything we can to keep our children alive. That's the bottom line. We really don't have a choice. But I think it is good every now and then to pause and look back and say, "Wow! I can't believe I did all of that." (laughter) Do you ever look at yourself and say, "Wow, I can't believe I wrote a book?" So let's talk about your book. I know I'm an author as well and whenever I tell people that I've written a book, they always say, "Oh, I want to write a book." Do you ever have anything like that happen to you?


Jenny Muscatell  19:19

Absolutely. Actually, one of the things that I'm working on right now with my writing career is I'm looking at something called The Legacy Series. And what I do is put a voice to the population that is reaching the end of their life and they want to capture different points of their life to hand on to their children, their family, their loved ones. And so I spend a lot of time interviewing people, writing down their stories, and collecting the thoughts that they have, and putting them into literary detail to make them a solid read. It works on so many wonderful levels. One - I love the population. I enjoy being invited into those very intimate moments with them, and it provides them with company it provides me with company, you get to hear all these incredible stories and all these inspirational stories and things that people have gone through and to have that honor to be able to write those down and capture them on paper or screen. It's pretty incredible. I really enjoy that.


Anna Jaworski  20:18

Wow, that's amazing. And you're doing that because, as a social worker, you saw the need?


Jenny Muscatell  20:24

I would say it's actually more just a mission on my heart. It started because of a woman in my church who did have a brain tumor and she wasn't given an exact timeline, but it was the end of her life. And she had said in a conversation to me, "Oh, my gosh! I love your book. I wish I could have the ability to write down the things that I want to tell people before I leave this earth." And she said that "My eyes don't really see anymore. My hands don't really work." And I said, "You know what? What you want to write, I'll write it for you." Since that time, we've probably talked twice a week, I'd say, an hour at a time. And we just go over every detail. She loves reliving every moment, I'm a captive audience because when you're writing, you need every detail. What were their expressions? What was happening? It's just, it's a really nice experience. 


Anna Jaworski  21:17

Wow, that sounds amazing. What advice would you give to a member of the heart community who also wants to put together a book?


Jenny Muscatell  21:26

My advice would be 'Go for it.' And I think I have some practical advice, which is - write everything down. Don't worry about making it perfect at first. Bring a little tape recorder in your car with you because you will have thoughts that come to your mind when you're driving down the road or you're by yourself and you're going to say, "Gosh! I need to write this down." But then you'll get busy with kids and all the things that you need to do. And you'll forget and you'll go, "What was that I was thinking of?" One of my pieces of practical advice is - tape recorder or electronic recorder, I guess I'm showing my age here.


Anna Jaworski  21:57

You know what? That happens to me all the time. I'm also in Toastmasters and so I'm always writing speeches. And you and I were saying that we both have iPhones. I love how I could say, "Siri, take a note." (laughter) And Siri will listen to me. Or "Siri, open voice recorder" and then I can record what it is I'm thinking because you're right. Sometimes these ideas will come to us at the most inopportune times when we really don't have pen and paper or computer handy. But as long as you've got your phone with you, it's amazing what our phones can do today!


Jenny Muscatell  22:29

It is, again, we have technology to kind of help us with all of these processes. Once you do have it and you can just write it down, you can put it all together. And then technically speaking, I always say, "Then go back to it." And then you can put it in order and then go back to it again. And you can add emotion. And then you go back again and you add what you visually see. There's a craft in writing, but it is important and only 3% of people that start out to write a book actually finish it. And I say we can all change that number. Let's make it more than 3%.


Anna Jaworski  23:03

I love that. I don't know where you came up with that 3% number. But that seems right from all the people who I have met over the years and who have been part of the writers' group that I belong to. That's another thing people can do is join a writers group. It helps to surround yourself with other people who want to do the same thing, don't you think?


Jenny Muscatell  23:21

Absolutely. And read. You know? Read as many books as you can. Figure out which stories that you connect to. And for Heart Moms writing a book, it's very easy to identify the target audience and who you're writing to because really, you're writing to other heart moms. And we all understand and we all get each other and we all value each other's stories and each other's experiences. And every story is unique and painful and beautiful and hard but triumphant and who doesn't want to hear about that?


Baby Hearts Press 23:55

Anna Jaworski has written several books to empower the congenital heart defect or CHD community. These books can be found at Amazon.com or at our website www.babyheartspress.com. Our best seller is "The Heart of a Mother" - an anthology of stories written by women for women in the CHD community. Anna's 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 babyheartspress.com to find out more.


HUG Info  24:37

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


Anna Jaworski  25:12

Jenny, before the break, we were talking about your book and I know from your bio, that you also have a passion for social work. I love how you've brought together really, I feel, your background in social work. your background is an author, and what you're doing now to help people with The Legacy Program. It's amazing. But I also know that you do advocacy work that extends beyond CHD. So can you tell me why helping others in crisis is important to you?


Jenny Muscatell  25:41

I think it's one of those things, though, which came first the chicken or the egg? I have always had a heart for the vulnerable ever since I was a young child. I don't have a profound moment that that came to me; it just was sort of innate - if somebody was being teased at school, I was generally the person who stuck up for them and invited them to have recess with me. I think that in part, that drive is part of why maybe I was struggling to be Faith's mom, you know, being able to manage having difficult conversations with people on very important topics that are life-and-death is something that I've been doing for a very long time. And on that flip side, because I've experienced that in my personal life, then those are conversations that can happen in the professional world as well. Becoming a social worker was actually a little bit accidental. But it worked out really well. I originally had started in nursing school. I had planned to go on to become a nurse practitioner. But after Faith was born, I felt very much like that was no longer a role that I wanted to have in the hospital. Because being in the hospital, in a sense, it's a place we don't want to visit. But it's also a place where we feel very safe and very at home. And I felt like there were just too many personal ties for me to take on being a nurse per se. And so I switched to the field of social work and advocacy just fit perfectly. And I think my experiences definitely helped.


Anna Jaworski  27:09

Absolutely! It sounds like you're a perfect fit, and you won an award for your advocacy work. So congratulations! Tell us more about the award and what it means to you.


Jenny Muscatell  27:20

I was honestly humbled to receive it. I think I've worked with a team of individuals who have the same heart for social work. They really dedicate their lives to helping other people. They sacrifice time with their families. They find themselves in situations that a lot of people choose to not look at me choose to avoid. And so when I was chosen to win the award for working for advocacy on very difficult cases, so I was really moved that people saw the work that I did as important. I always felt like it's important. But one of the things in this field is, you always feel like there's more that you need to be doing. And you feel like you're not doing enough, you can do all you can do. There’s only so many resources out there, but there's always somebody else who needs help. You just can't do it all. And so to be recognized was just like I said, very moving. 


Anna Jaworski  28:11

Yeah, well, it sounds like you definitely deserved it. And you're so passionate about so many things. Your daughters, your writing, the work that you do. It's really inspiring to see how passionate you are about everything. What advice do you have for heart parents who might be fearful about their child's future, and they might be suffering from PTSD because of the trauma of handing their child over to a surgeon?


Jenny Muscatell  28:36

The first thing that I would say is one that is completely understandable. It is very traumatic, to go through all of the things that we go through. Inevitably, it's something we all experience, we all live, we all die, but nobody wants to face that for their child. It's our job to protect them. And so when something tells us, we might not be able to, it's traumatic, it's horrifying, and your world can feel very out of control. And the advice that I would have is none of us really know what we're going to face in life. None of us know what we're up against. But to just, I guess, again, pause and relish in all the moments that we have. I think my bigger lesson from that actually is not related to my heart warrior. But my first husband, who died of a heart attack at the age of 38. And after his death, one of the things that stood out to me the most is it's very easy to beat yourself up every day, trying to do everything right, trying to be perfect at everything, and take away pain for people and make things easier. And one of the things that stood out to me the most was my husband, I loved him and he knew I loved him. There wasn't really more that I could have done that was a very good wife. But what I missed was relishing. I wished that I had paused more. I wished I had relished more in all the moments that we had. And I think that for anybody in real life, we just have to not beat ourselves up about the end of the day woes of all i wish i got this done. I wish I got that done. And really just look at the beauty of every single day because there is beauty in every single day.


Anna Jaworski  30:19

I just love that you're right, there is beauty in every single day, even when you're in the hospital friends, and your babies are on a ventilator. And you're wondering, am I ever going to be able to hold my baby again, the fact that your baby is still alive, and you're there with them? And there are people trying to save their lives. That's beautiful. And you're right, we have to take each and every day, even those days of struggle, because those days that we struggle, Jenny, don't you think that those make the days when we're not struggling even better?


Jenny Muscatell  30:51

Absolutely. And it's an old saying, “Count your blessings; one by one.” That can be very hard to do. But oh my gosh, when you actually sit down and count your blessings, one by one, you can fill pages and pages of things breath in our lungs, blessings, being able to have medical care by a team of doctors who've literally dedicated their entire lives. I'm always impressed and blown away by the dedication of these physicians. And that's something that always just fills my heart with gratitude: every moment, every memory, every picture, every laugh, every funny joke, every teenage argument. 


Anna Jaworski  31:29

Because those teenage years go by so fast, don't they, they do. It’s hard to believe how quickly those teenage years go by and now both of us are moms of adult children and those have their own blessings. I'm thankful every single time Alex comes over and has dinner with us or every time Joey FaceTimes with me because he's in Florida now. I hate it that he's so far away. And I think you're right, it's most important to thank the good Lord for the blessings that we do have because we are so very blessed. And I feel blessed to have had you on the program today. Thank you so much for coming on the program with me, Jenny.


Jenny Muscatell  32:05

Well, thank you so much for having me. It's been an absolute pleasure.


Anna Jaworski  32:09

It just went by way too fast, didn't it?


Jenny Muscatell  32:12

I think they always do.


Anna Jaworski  32:13

Oh my goodness. Well, that does conclude this episode of "Heart to Heart with Anna," thanks for listening today. Please come back next week at noon eastern time or any time really, that's a great thing about podcasts. You can come back at any time. The new show will go up at noon Eastern time. Until then find me on Facebook just look up "Heart to Heart with Anna" and let me know what your favorite CHD book is. Since we have an author here and I'm an author, let us know about the books that you like and why you like them. I think that's always interesting. And I'll share some of the responses in some of our future shows. But until then, my friends remember, you are not alone.


Conclusion  32:50

Thank you again for joining us this week. We hope you have been inspired and empowered to become an advocate for the congenital heart defect community. Heart to Heart with Anna, with your host Anna Jaworski, can be heard every Tuesday at 12 noon, Eastern Time.