Working Dads versus Stay-at-Home Dads (Remastered)

Join us today as we talk with Heart Dads, Chris Perez and Michael Madsen about how they made decisions regarding childcare and work after having a child with a critical congenital heart defect.

When a family is told they have a baby with a life-threatening illness, does one of the parents have to stay home with the child? Why do some parents choose to become stay-at-home parents? Why do some parents decide to continue working? In this show, we'll discuss the pros and cons of staying at home versus going back to work. Is the health of the child at risk? What about insurance? What about the quality of life of the child with a heart defect? of the family? These are just a few of the issues we'll discuss in this show.

Our Guests today have lived through multiple heart procedures with their children, open-heart surgeries and hospitalizations. They have been there through their children's recoveries and complications. Tune in today to hear about how these fathers decided to handle childcare and their return to work. Find out how their thinking changed over time and what they have come to value most. The fathers share helpful advice for others and what people need to keep in mind when dealing with such a difficult topic.

Thanks to our newest HUG Patron, Ayrton Beatty and long-standing Patrons: Laura Redfern, Pam Davis, Michael Liben, Nancy Jensen, Alicia Lynch, Deena Barber, Carlee McGuire, Carter & Faye Mayberry, and Frank Jaworski. We appreciate you!

Transcript

spk_1:   0:02
Welcome

spk_2:   0:06
to Heart to Heart with Anna, featuring your host Anna Dworsky. Our program is a program designed to empower the CH to York and genital heart defect community. Our program may also help families who have Children who are chronically ill by bringing information and encouragement to you in order to become an advocate for your community. Now here is an ID Dworsky

spk_3:   0:30
Friends Welcome to heart to Heart with Anna for one of our

spk_1:   0:33
encore presentation today will be talking with working dads for Stay at Home Dad with today's difficult economic times, something that so many of us I have to

spk_3:   0:44
think about and so many people are unemployed right now that being a stay at home parent may not be a matter of choice. That may be a matter of necessity. So sit back and enjoy Today show. Welcome to the 10th episode of the second season of Heart to Heart with Anna, a show for the congenital heart defect community. Our purpose is to empower members of our community with resource is support and advocacy information. One thing is certain. Children with congenital heart defects are surviving in greater numbers than ever before as we've said before in this program, the number of adults living with congenital heart defects, or C H D, is now greater than the number of babies being born each year with PhDs, while the number of Children surviving there CHD has changed. One thing hasn't changed. That is the question appearance must face after their Children are diagnosed with a PhD, especially if the C H D is a critical congenital heart defect requiring surgery within the first days, a week for months of life. How well this baby affect the lifestyle of the family. It's a given that when a couple has a baby, their lives changed forever. Even going from having one child to two are from two Children. 23 means changes must occur. But imagine how much greater the change will be for parents of Children who have a baby born with a PH. D. Can the baby survive being in day care or with the baby sitter? How critical is it for one parent to stay home with the baby? What about insurance? What about the families? Quality of life? This is something the Journal of Pediatric Health Care examined in an article published in 2000 and 10 entitled The Meaning of Cost for Families of Children with Congenital Heart Disease. Semi structured interviews were conducted with parents of Children with various degrees of CHD complexity and socioeconomic status currently admitted for CHD surgery at a large regional hospital, The researchers determined that there were two major areas of cost burden for families. One was lifestyle change and the other was uncertainty. Cost went beyond the consideration of money. The major areas discussed were financial, emotional and family burden, the two factors that seemed to stress family most with a level of complexity of the heart defect and the socioeconomic status of the family. When families found out the baby was going to be born with a congenital heart defect, they tended to change their spending habit in order to prepare financially for the baby's birth and the probable increase in medical bills, the researchers recommended. Doctors talk about these costs with parents, not just the increase in medical bills but the cost of the family regarding possible lifestyle changes and emotional and financial stress on the family unit, especially given the level of uncertainty the families will face with having a PhD child today we'll talk with too hard Dad who have faced the cost of raising a child with a congenital heart defect. How has having a CHD child affected their decision to work outside the home or to have one parent stay at home to discuss this topic today? Our guests are hard Dad, Chris Perez and Michael Madsen. Chris Perez is a hard data Nolan, a twin who was born with hypoplastic left heart syndrome. Nolan had the normal procedure at seven days of age. The Glen procedure at seven months old and continues to receive physical, occupational and speech therapy's weekly. Chris hopes to use his experience of the heart bad to educate others and give back to the community. For his 32nd birthday, he did 32 random acts of kindness in order to promote CHD awareness. He lives in North Carolina with his wife and three cents, including Grant Nolan, twin of 19 months, and Hudson, who was four years old. He works in administration for a large health care system and is the author of a blogger for her dad called Half Heart. Whole Life, Welcome to Heart to Heart, with Anna Chris,

spk_0:   4:41
Thank you so much. I'm really happy to be here. I love your show, and I'm honored to be here with you.

spk_3:   4:46
Well, thank you. I love your blob. Did I get it right? Is it half heartedly Life?

spk_0:   4:50
Yes, Absolutely. Have our whole life heart block for debt. That's correct.

spk_3:   4:55
Well, I really have enjoyed reading your blog's and I was so impressed with it. Now, Chris, one of the entries that I really liked was the map that you made for taking care of Nolan. Really impressive. I really like

spk_0:   5:10
you, but I can't take credit for it. That was definitely something that I came across in the presentation at work on a conference call and someone showed that and I said, Who I need to borrow This thing's gonna be a great thing to share with people. I set my own and it was quite a project.

spk_3:   5:28
Well, yes, it waas when I saw all of the different people who are involved in helping to take care of no land, it was really quite impressive.

spk_0:   5:39
It's definitely a big undertaking for sure

spk_3:   5:42
it is. Do you think that a map like that would actually help parents to decide if they can stay at home or if they can return to work or if they need to stay at home Due to the level of complexities of all of the different therapies that have to be attended and the different doctors appointments, I think it

spk_0:   6:01
could be a help initially for sure. I think the map that I created, the purpose behind it was to show kind of all that It takes care for Nolan. That kind of branches off into the positions and thoughts about the future may be associated with schooling and you know, whether his teachers are going to be CPR certified. It really build from that central concept of having a child with a PhD, and I think it's really helpful just to see kind of what you're getting into. But I think it's also good to keep up with because in Nolan's case, a lot of the things that we've added to that map came along as we progressed with his care when he received a G to when we started going to different therapies for him and therapies were added was taken away so that map continually changes, but I do think it would be really helpful just to be kind of the vastness of what you're getting into being a DHD parent.

spk_3:   6:54
I think it would be helpful for parents to see maps like that for different kids, to see how it's different. Like for us. We were really lucky. My background is in speech pathology. So when Alex did have some speech problems, I just did therapy with him all day long. Every day. I didn't have to take him to a speech therapist, and luckily for me, he responded fine with me, and I didn't have to take him to somebody else. But for somebody who doesn't have that kind of background speech, there be. It's definitely something that would be in their repertoire a little really lucky we didn't have those feeding issues. Having a G tube is very complicated. I just did a show on that, and it really helped, too. Help me understand the complexities of having a GT that is really a lifestyle change when you have a child with the GT, wouldn't you say?

spk_0:   7:43
Absolutely. My wife and I were having a conversation about this just very recently, that now that we are kind of between the gland and the bond hand surgery, which is probably about a year or so in the future. Right now, our biggest difficulty with Nolan is this G tube and how we're gonna get him the East and eventually get off this G too. Because as of right now, with the repairs on his heart, his function was great. And so now that's the difficulty is how are we going to get him to eat and get him to be less dependent on this tube? And it is definitely a big lifestyle change. And it is just about as big as the heart condition itself for sure.

spk_3:   8:16
Well, it was just so demanding when I was talking to these mothers who have had to deal with the GT for one mother every two hours. She was having to do the Bolan feeds and the baby's tummy would get upset. And so they were having to pat the baby and try and help him to get through because he'd had a Nissen fund application so he couldn't vomit and he was really uncomfortable. I had no idea how involved some issues were for Children who have G tube. I can't imagine trying to feed two babies. How do you do it?

spk_0:   8:48
I do what I can do. A lot of the credit definitely goes my wife. She is a super mom, a superwoman where she juggles three Children at home and does a stellar job of it. She really takes on the effort of taking all into therapies and often three kids along with her on these therapy trips and really goes the extra mile to make sure that Nola's nutritional needs are met and even looking for opportunities where we can try different things to get him to eat or try different ways to keep this nutrition up. And sometimes we sit the twins next to each other and Grant, who is our heart healthy child. He eats, and sometimes no one gets a little jealous and want to try unions like brother, and that really helped us out a lot. So we definitely play off that jealousy when we can, and definitely a process. Some days are better than others, if you can imagine trying to travel. We recently did about a 10 day trip up to the Northeast a couple weeks back and traveling with the G tube is ag in and of itself, with all sorts of diseases and equipment and things like that.

spk_3:   9:48
I hate right. It's complicates everything having a g t. But I had no idea how difficult it was until I was talking to these moms. And I had friends who have had G tubes with their babies, but they never really talked about it very much. I think maybe they were afraid other people wouldn't understand, but doing a whole share laundry tubes. That's all that we talked about. And it was very enlightening to me. And I could see why the mother that showcased during that show was so eager to get her child off of the G t and how this led her to find this program overseas and the wonderful results that she had. So if you haven't heard that show, I suggest you listen to it. But since we're talking about working versus state home parents, so I know that you returned to work. But it sounds like your wife is a stay at home Mom.

spk_0:   10:35
That's correct. Yes. You stay at home. Mom. We were both actually working when we found out we were going to have twins. I had just recently started a new job, and that's how I kind of got into the health care system. Prior to that, I was unemployed for 17 months during that really, really difficult economic times that it seems like everybody was touched by. I started a new job. We found out we were having twins and we were freaking out. And we're like, Oh, my gosh, where we gonna fit them? And how are we gonna get all this food and and that really with all the important stuff? And later on, when we found out about Nolan daintily diagnosis, all that kind of stuff went away and we eventually started. Yeah, that stuff become important anymore. And we needed to figure out what we were gonna do because we knew we weren't gonna be able to put Nolan and child care. And even if we could, we couldn't afford it. My life where I would work with our entire salaries, going to child care and not with the challenge for us. So we don't like

spk_3:   11:29
to be Children for child care. It's not just one. You would have had three inch our care.

spk_0:   11:34
Sure, Yeah, nobody's waiting don't copious amounts of money on me. So, uh, you know, we have the kind of work my life bravely chose to stay home with them, and she's done a wonderful job of it for sure.

spk_3:   11:46
Well, I'm sure she'll appreciate hearing that from you. It's always nice to be appreciated, but you didn't have to go back to work, and it sounds like you were home for 17 months. What was the hardest part about having to be a working dad being

spk_0:   11:59
home when I lost my previous job was unemployed for so long. I had a chance to spend with my oldest son, who at the time was five months old. And, you know, I I basically got to see him grow up. And it was a lot of great opportunities that I know. Not a lot of dads get to experience when my wife gave birth to the Twins and we knew there were surgery's coming up high. Definitely that it wants do it again with the three. I know it will be harder, but it would probably be easier for me to say way back into that. But the challenge was being a working dad, definitely was the heart baby is completely different. There's a level of detachment that you kind of feel throughout the day because you have to get to work and you have to focus on work for sure. And then I stay busy at work and I kind of sometimes get really buried in it. It's easy to get either completely distracted by work, to where you don't think about what's going on at home, or you let everything that's going on at home consume you and you get distracted from work, which is not good either. So the challenge is really kind of spying that balance, and communicating with other people like this is this is my life. This is the reality of my life and there will be an occasion where I may not be completely with you in the room, and you kind of have snap me back into things and everybody seemed to have been really understanding about

spk_3:   13:10
it. It's really interesting the level of detachment. That's not something I've heard people talk about before. But I remember when I was a teacher, which was before I had Children. I always felt like when I walked into the door of my classroom. Everything about my personal life stayed outside that door and my entire focus needed to be on my students and all my work. And I can't imagine how hard that would be if I had a heart baby at home. It's part of you. Yeah,

spk_0:   13:38
it is. It was really hard initially to go back to work. I went back to work a lot earlier than I had anticipated. Starting to run out of days off to take. I I had to go back to grudgingly and I had some challenges really with. I don't think I was mentally prepared for it, but my son got out of surgery and his chest was opened with multiple attempts to close his chest and he was still there and we couldn't bring any market with us to the hospital. So there was a lot of running around and a lot of getting people to watch our kids so we can go to be with Nolan at the hospital because he was there for two months and recovery. I came back and I was not prepared to kind of deal with co workers and health care system and with anything I wasn't ready for life for sure on definitely blogged about it before. You know, I tried to be as honest as possible, and I like to say that I came back like the mix of a grizzly bear in the incredible Hulk. I was not pleasant, and I wasn't ready to kind of deal with people in the minute somebody said, Oh, man, I'm so tired that I would be like, you know, you don't know what tired is You want to know what tired is find myself just kind of locking myself in my office just for the sake of everybody else. And, uh, it is that was a struggle for me. It really was a challenge to kind of prepare and to reintegrate myself back into the life that I had before the wind came alone.

spk_3:   14:56
It sounds to me like you experienced what I think every parent experiences, and that is a bit of post traumatic stress disorder. We experience such horrible trauma, having to hand our babies over to a surgeon that I think people don't recognize how much of that stays with you and for, you know, Mama's we become Mama Tiger or Mama Bear, just like what you're describing, would never have considered myself the incredible Hulk. But for a guy, I could see where you could feel that way, where you're so desperate to take care of things and G tubes and open heart surgeries and possible infections of complications there outside your realm of what you can take care of.

spk_0:   15:37
Really, it was a frustration, for sure.

spk_3:   15:40
Yeah, and I think that the hardest part about that is that we want control. You know, we want to be where we can have a say about it and for a lot of these things, we don't have a say, and that's a hard thing to deal with. I think your feelings were completely normal for her parents, but I think that people who aren't in a hard world really probably don't get it.

spk_0:   16:02
No, they know for sure. If that's one of the struggle, there's even working in health care. Most folks didn't really get a grasp of what we had been going through, you know, you get a lot of the comets, which I'm sure lots of the heart pairs that are listening right now have heard the oh, but he's going to be fine now, right? Or oh, is it like a simple hole in the heart? No, it's not. It's much more complex than theories than that. I tried to get people to understand at that time. At any given moment he could be taken away from us, and that was the types of things that were weighing on my mind. Not so much like did I finish this dome report by Friday. That was seemingly the furthest thing from my mind. But I knew that there was no way that was gonna fly for a long period of time at work. So I had to kind of wrap that back together. And if people didn't understand, they just didn't understand. And it's being wanted to understand, like you unhappy to tell them and that was the way it was gonna be.

spk_3:   16:56
I think that's a really good point. And that's something that you address somewhat throughout your blog's is some of the feelings that you experience some of the things that you're going through as an Angela just Dad. I really love that, but you're so open about it, and you do give people a bird's eye view of what it is that your experience, some of the high and some of the lows as well. And I think that having to goto work like you said, No, when you have reports do or knowing you have people you have to meet with, that's a dress. No matter if you have a heart child or not, that's a stress. But have any additional dressers of Oh no, he pulled his tube out or Oh, no, there's a doctor's appointment today. Now what are they going to tell us? And I can't be there with my wife and those air additional stressors that a lot of other people don't understand and they're invisible. Nobody knows what's in your mind, and it's really not something you want to burden your co workers with or your boss with every single day.

spk_0:   17:49
No, not at all. I'm glad that you really put it the son of an invisible problem, because it's easy to keep that to yourself because everybody's got something they have going on in their lives. I'm sure there's lots of co workers that have lots of places they need to be, and lots of issues related child care and things like that. There's lots of times, or did it work and think to myself? Right now, my life is trying to throw three kids into a van and drive 40 minutes the uptown Charlotte to get them all into appointments, and they're probably gonna be screaming their heads off, running all over the place and no way to help her. There's nothing I can do because I have it in the meaning or I have a certain amount of things planned, or I just can't be away from work that long. And it is a struggle. I wish I could snap my fingers and make it all easier, but I think we all know that's not how life works. Unfortunately,

spk_3:   18:35
no. But it sounds to me that over time you've learned to compartmentalize your life. Is that a way that you think you could describe it where you almost have to train your mind that while you're in this situation, you're only going to think about what could and when you have a 10 minute break? Then if you want to call home, you can claw home and find out how things were going on up Then, when that 10 minutes is up, it's back to work. Is that how you function?

spk_0:   19:00
Yes, it definitely in a way that I think it's healthy for me and this is just me. Personally, I think everybody's different. I found that it's actually the position I've been working in lately, that I have a little bit of a longer commute to work. In the morning. I stayed completely busy, rotted a kind of go, go, go! And it's great for me because it allows me. It forces me, I should say, to focus more on work I get there. I know exactly what I have to do for the day, and I know that I have to be on this unit talking to these people. So my focus will be on that because I know within an hour I've got to go somewhere else and changed my focus and my mind is elsewhere. Then the day is not gonna be fall and it's really helped me. It's kind of forced me to compartmentalize a little bit, and I think that's really been healthy for me because sometimes when I really start to think about Noah's heart condition and things with our family. And then you start to think about you start to drift a little bit. You get you know what with me. Why did this have to happen to my family too? I wish we had more money to. I wish we had a maid and Opare and all sorts of things like that. You know, you're my first address. Do I wish I had a genie and if I had a genie, I'd wish all these crazy things to make life better. And then suddenly, four o'clock and you did nothing with your day. It's really helped me focus. And then I know that when I leave work, I turn on the back to home switch. And I know that when I get home, I'm going to help with the kids and this has to happen. And that has to happen. And I'm really focused on that, because when I get home, I don't think about work at all. The work phone goes off. I don't look at the email. I go home and I'm home. And that's my job at that time.

spk_3:   20:40
So do you think it helps you to compartmentalize knowing that your wife is at home? with the kids and they probably couldn't be in anyone else's better care.

spk_0:   20:50
Absolutely, for sure. I know she has it under control. I know that there are days where it is an immense challenge. I know there's days where she gets tired. She is, for sure, a hero for lots of different people myself included that she just keeps, keeps on keeping on. I know she's got everything under control that's good for me. I could get to work and I could know everything is going to be okay. And the great thing, too, is I work with some really great people. To where if there was something that happened where I needed to step in and they would be okay with that, they understand everything that's going on and how important those things are to me, but also reassured them like this is not gonna be in a minute. Distraction. That work,

spk_3:   21:31
Chris. What role did insurance play in your decision to be a working dad?

spk_0:   21:36
A big one, for sure. Medical costs. I wish I could begin even wrap my head around the cost associated with having a H l H s child, much less three Children period. It is no there. You're talking five therapy appointments a week on top of different doctors, appointments and all sorts of different things and your, you know, your regular pediatrician checkups, and they want to send them for all sorts of things. And these things cost money and so going toe work and kind of being part of the health. I work for the healthcare system that provides the care for Nolan, and so it's actually really great to be a part of that. So that was part of what helped me with the decision to go back to work and to stay where I was. But yeah, definitely the health care and the health insurance is an important part. There's lots of things out there Medicaid, and we're blessed to have that for Nolan. But you know, you definitely need to have that kind of. It's good to have that primary insurance for him, and we've had a lot of struggles with people building things incorrectly, and that's yet another thing that my wife does on a routine basis. And and she is amazing with that because I can't even comprehend half of what's going on with it. but it definitely plays an important role. We felt like that was something we needed to have. And when you get those statements that say, This is not a bill and it's like 700 plus $1000 you want to fall over, I can't I can't imagine what those types of things look like if you don't have insurance,

spk_3:   23:00
right? Right. I feel exactly like you did. My husband is also in the medical field. He's a nurse and we got those bills to fall out of their chair. They're very scary. I added up Alex's 1st 2 surgeries in 1/4 of a $1,000,000. If we hadn't had insurance, it would have been corrupted us. I don't know how families do it who don't have medical insurance. So I I know that that was something that was a major importance to us. Is a family of an angel agent baby, too, was that we felt so blessed that we had good medical insurance for Alex. Well, Chris, what is the best advice that you have for parents who might both be working but just found out that they're expecting a baby with a complex heart defect like a chili. Just really The

spk_0:   23:48
best advice I get for people who find out about this diagnosis and are about to have their h l h s baby is to number one. And this goes for everything. Outside of whether you're gonna go back to work or what am I going to do or how to manage for this is try your best to connect with other parents. The sole reason I started my vlog. It's just to be able to reach out the other Dad. I love all the hard mom. Resource is the heart Moms are very strong and powerful. We love them, but the hard dad stuff kind of thin. And I know guys really different. We're wired different. I think everybody knows that and good and bad. You know, it's it's really good to be able to make a connection, because in those connections you're gonna learn about people's experiences at what hopefully to expect at least a little bit. Every child is different, But what I would encourage parents to do is really talk with each other, talk with each other about what is this really gonna look like? And what are your concerns to be really honest with each other. Like I'm scared that we're not gonna be ableto forthis. Okay, that's a really, really feeling. That's a real

spk_3:   24:49
mob

spk_0:   24:49
stability of happening, that that things were really, really expensive that emotionally taxing is financially taxing. It takes up all your time and all your energy. You know, you're gonna have to be willing to pour all that into into your child and into your life. This is your new life. Congratulations. And you know, you're gonna have to be ableto kind of go with it and sit down and have that conversation say, if we both can't work and if one of us has to stay home, who is it going to be? You know, just trying to have these conversations ahead of time and kind of put all that out there because I need to think what it's like when people haven't kind of decided that or even thought about it beforehand. And you don't want to lead into, you know, having arguments about the types of things when you're already in a high stress situation and talk it out, find other people. You know, this this this show right here is a great example of what other people have done because, you know, I went back to work and that my work for people and it might not work for people. You know, those options are out there that really fine and reach out and talk to the people who have been through what you're about to go through and find out what they did.

spk_3:   25:53
That's excellent advice. Thank you so much, Chris, for coming on the show and for sharing with us. We need to take a quick commercial break. But don't leave coming up with another heart dad who was a stay at home dad but now is a working dad. We'll discover how he feels about both situations and how he feels about being back in the workforce when we return to heart to heart with Anna.

spk_5:   26:15
Anna Dworsky has written several books to empower the congenital Heart Defect or C H D community. These books can be found at amazon dot com or at her website, www dot baby hearts press dot com. 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 Hypo Plastic Left Heart syndrome. A handbook for parents will help you understand that you are not alone. Visit baby hearts press dot com to find out more.

spk_3:   26:53
Welcome back to our show. Heart to Heart With Anna, A show for the congenital heart defect community Today we're talking with Heart Dad Chris Perez and Michael Madsen. We just finished talking with Chris about his experience of being in a workforce while being dad to a child with a chili chest. Now we'll turn our attention to Michael Madsen. Michael Madsen Send. Gabe has congenital heart defects that have influenced his life in many ways. Gave, now 13 years old, had septal end aortic defects repaired as an infant, and just before kindergarten, he had a quote unquote tune up, according to the surgeon, to remove a sub aortic membrane. By that time, electrical conductivity was affected and unexpectedly gay became pacemaker dependent. Subsequent surgeries to adjust and replace devices have been additional milestones in game development. Gave is an avid baseball player and mountain biker who doesn't allow his history to affect his present activities or future plans as an infant Mike and gave shared a special bond. Mike, then in graduate school, was gave daily companion while his mom worked a regular schedule of play snacks, meals and naps broken up by medications and classes. Yes, Gabe would attend to Was the norm once gainfully employed My traveled for work quite often. Every day with Gay became one or two days a week at the most. That early wanna one period was a very special time. That Mike's Life. One. That he comes back too often when alone with his thoughts. Mike is now married to Aaron Salisbury, who puts up with a lot of wife and step mom to Gabe and Alice. Welcome to heart to heart with Anna Michael.

spk_4:   28:32
Yeah, hi, how are you today?

spk_3:   28:35
It's very good to talk to you, and you're our listeners who don't know you and I have a long history together because it'll actually wrote Yes, he wrote for my book, The Heart of a Father, and I thought it was interesting how Chris said that the dad's perspective is often kind of overshadowed by the moms who are out there and blogging and talking about it so much. But you dad seem to be a little bit quieter, which is why I felt the heart of a father needed to be written and put out there. Thank you for coming on my show and giving me a chance to talk to you some more. Michael,

spk_4:   29:08
you bet It was great to listen to Chris as well. There's a lot of great things to say.

spk_3:   29:12
I know, I know. I bet you were reliving a lot of things that he was talking about you.

spk_4:   29:17
Absolutely. Yeah, very therapeutic.

spk_3:   29:20
E thinks so, too. That's one of the things I liked about what Chris was talking about, how he said he felt that connectivity was so important. And to me, that was one of the most important things about putting together. The book that I wrote was connecting with moms and connecting with that finding out that, yes, one child might have tetralogy of Hello, and another might have transposition of the great vessels, and another might have a jolly chest. But we all feel the same way. We're all going through the same things, and I think that common experience and knowing the way that we felt the fears that we had the great joys for little milestones, but how everything was kind of magnified because of our Children's heart defects. It made us a really close community. Don't you feel that way, Michael? Yeah,

spk_4:   30:04
definitely being a part of that when you were putting that together so many years ago, I guess what, 12 years ago, sometimes God. And I mean at the time, there weren't that many outlets for dad's toe talk about these things or even really kind of collect their thoughts and try to put him on paper. And it was like I said, it was very therapeutic for me at the time to do that and also to try to share my experience with others. You're the baby hearts press vehicle, so there's a very good experience, and I actually I think, brought me closer to my son. Just because I'm ableto process a little bit more, you know, once you start thinking about it some more and you concerned, put putting things in perspective, it does help you. It does help you process.

spk_3:   30:44
I think it does, too. I think that reflection that were required to day when we're writing or we're talking about it. I think it helps us to process how we're feeling like Kristen I were talking about. I think we all have PTSD from having handed our Children over to surgeons, and I don't think that a lot of us can process it at the time. We're doing what we have to do in order for our Children to survive, but you can't think about it too much because you just have to act. I mean, I felt like I was in robotic mode for a good part of Alex's hospitalization and maybe even some of his recovery. And it wasn't until later, when I was writing about it, talking about it with other parents, that I was able to really process what we had gone through and look back and say to myself, Oh my gosh, how did we get through that? Did you have that feeling, too? Yeah,

spk_4:   31:30
definitely. And with subsequent surgery and device implants on other things that that games have to go through it not so much of a shock when you go through it again, although you know each time is different presented and challenges and I think you're ableto because you're in the community because you're speaking about it, talking about right, writing about it and listening to other folks what they have to say about it. But it really does help you prepare for whatever it is that your Children have to deal with it and christen the nail on the head. When you said you're becoming a part of the community. It is important for electing parents of PhD kids, and it really is a valuable tool to help you be a better parent to those kids.

spk_3:   32:12
I think so, too. I loved your essay for those of you who may have a copy of the heart of a father. If you turn to Page 70 you can see Michael's essay, which is called Stay at Home Dad. And you actually talked about your wife and your decision to put Gabe in day care as little as possible. That's often a reason people decide to stay home with our heart Children. Can you tell us about what it was like staying at home for Gabe? Did he have fewer infections of hospitalizations? And you think he may have had if he had been put in a daycare situation

spk_4:   32:45
I think so. I think so. I mean, it's hard to say, but I think that that's definitely an outcome of that time, you know? And also I think we were best prepared to assist him. You know, we lived in a small community and in Northern Michigan and being grad school, having the flexibility that I did made it a little bit easier to be a stay at home dad. But being the small community, there weren't a lot of resource is for kids like Gabe, particularly in the childcare world. Most of the childcare providers weren't necessarily equipped to deal with him, so it was a pretty clear. But nevertheless it was not expected. I mean, we knew we were gonna have a baby when I was going to grad school for the first year, and now that was enough of a shock. But then once and he was not diagnosed at a time. He was not diagnosed until he was in heart failure in critical condition on just the doctors. They're just we're not equipped. Like I said toe, understand what he was going through and other jaundice and other things were masking a lot of his defects. And that meant that we felt we just did not have the resource. We didn't have family around, so it was a pretty clear choice. But let's take care of them as best we can ourselves and move forward. But that required education. We had to really understand what what it was we were dealing with. Resource is like yours. We became aware of and others that you know that we're that we're there for us. When we needed them, when we didn't have much else, including the doctors in our community, they just weren't really prepared to deal with him.

spk_3:   34:11
I couldn't agree more. Now my son is a little bit older than yours will be 20 in August of 2000 and 14 and there really weren't very many resources at all. And very sadly, a lot of the resource is that were published. Said that all babies with HHS, which is what my son was diagnosed with, that they died in infancy, which, of course, is not what a parent wants to read. So how could I optimize his chances for survival? And just like your son, my son was not diagnosed in utero. He was not diagnosed until he was in congestive heart failure. He also had jaundice and other conditions that were masking what his real problem was. That came telling me he was teat and he had breast milk. John this and this and that. And it wasn't until he was critical that he was finally diagnosed. And just like you, we were in a small community that was not prepared to handle a kid like hands. So we were rushed by ambulance. And this tells you how long ago this was because they didn't have a helicopter back then in the hospital in our town. So we were rushed by ambulance down the highway, three hours to the facility that would eventually save my son's life. So I can't really understand what you were going through. It's harrowing way

spk_4:   35:24
had the same experience. We had to drive Gabe three hours to market so they could put him on a helicopter to take him down Harbor. It was just amazing. Amazing process. But you get him. You know, with time and with experience and with education and publications and shows like this, the word gets out and people can understand better that they could do it. Kids do it.

spk_3:   35:43
That's right. We have hope that they can make it. And that just don't just give up on them, which is really critical. I wanted to talk about your essay on page 73. You said that lesson of relinquishing the pressures and pains of professional life to enjoy the beauty of my growing family has been the most imported one I've learned. I really loved that sentence that you had there. And I was hoping maybe you could tell us a little bit more about that And how you were about a long time ago. How has your feeling grown about that today? How do you feel about that today?

spk_4:   36:18
Well, we're gonna put me on the spot for that. No. Good. I think that that was an important statement to make at the time. You know, you're so focused on your career. And I was going to grad school to advance my career and to make things better for myself and my family, my son. And, you know, you just got a kind of let go of that, Chris. Well, to that Just gonna have to re prioritize, and you have to shift the way you think about where you are in the world to not only accommodate this child but also a child with a PhD. It's not a decision that we're trained for as parents, especially as they had to, because, you know, we're supposed to provide and you know, we're supposed to go on the paycheck and get the insurance and do all the things we need to do in order to take care of our families. And when you throw in all those complications, it does throw you for a loop. But you have to take a step back and re focus and understand that when doing all of that to support your family and your child. Yeah, that's good in all really is about the child in their development. So educating yourself about the child taking a break from work and really focusing on the child is really what they need. You know, the doctors can take care of all the complex stuff, But the day today and the love, that's just that's what you have to give them. So that was, Ah, switch that I had to turn on in my head.

spk_3:   37:38
I think so, too. And I think unless you're facing a life threatening condition like what we are with our Children with critical congenital heart defect, you may not ever experience that. You may not even realize it so easy to get caught up in the rat race and to thank Oh, I need a better car. We need a bigger house, We need a better vacation and we need this for that. But when you have this child with a life threatening illness, all you want is good health. All you want is for you. You're right. You re prioritize reaping. And it's amazing how your priorities change. And all of a sudden, what's most important is just spending time just having that time with each other. In your essay, you worried that focusing on your sundering that early time might hurt you professionally in the long run. What has been the actual case? Now that you've had some time past all that,

spk_4:   38:31
I think just the opposite. Nice thing, Chris Mountainous is well, insurance is your top priority has a parent of a PhD child. You find that cat like plan, but one that you know you need. You hope you don't need it. But if you do, you know you have on have interview every subsequent transfer from one job to another, working moving on from one job to another. That's always the first question. What is your health care plan? What do your premiums? What kind of coverage do you have? Is it a group plan? You have a son with congenital heart defect. You know I can't get caught in the old pre existing condition thing. I need to be ableto provide that from the get go. I think that took some employers a back a little bit for a while. I think that it took him aback when I would switch jobs, my most recent position. I said that right away during the interview, and they all understood they had heard it many times before. And I think that's on every parent's mind, not just those kids CHD. But having that is essential. So that answer your question or exactly I think it has made me better because I think I appreciate what I do have when I am employed. The benefit package that I have. It's not always about salary and title in position, but looking at the whole benefit package with insurance. It makes me really appreciate what we have, because in America, that's all. That's really what we gotta do. You know what we got? We gotta work on him. Insurance. I think it may be a better employees. Makes me appreciate my work and what they offered my family

spk_3:   39:55
well. And it doesn't seem like that time off course you were in graduate school, so it's not like you were just a stay home dad who was a fool to graduate student. So that's a little bit different in some cases, Like with me. I wasn't a graduate student when I was staying home with my Children. I was solely focused on my Children. I wondered about that, too, if after I finish raising my Children, if I wanted to go back to the workforce, would they see all that time that I had taken off to raise my Children as potentially unemployable? But doesn't sound like that's been a problem for you. You've been able to get a job in to apply for several different jobs, and it sounds like you've been able to be selective about where you've chosen to work.

spk_4:   40:34
Yeah, Yeah, I haven't. Maybe that's nature of my work and just how specific it is. But regardless, you know, it made me it made me appreciate working more.

spk_3:   40:44
Well, now you're the dad of an early teen. I cannot believe Gave 13. That's just so how is it different now that you've got a preteen? Or now he's actually teenaged and a working dad versus when he was a little baby and you were the stay at home dad who was with him all the time. What do you miss most with Gates

spk_4:   41:06
regarding his heart? I think the time that we shared together when he was very young, it was very focused on him in his heart. And that wasn't special. It's just something that only we experienced in that many other parents did. Those with kids with CST. Now, as he grows up, it's more of ah, maybe not so much working dad, but talking to him about as he grows, what he can expect to encounter in life and the decisions that he has to make a different kind of education. You know, before it's all just you take care of them and you basically put him on, lock down and make sure everything's okay. Well, he's 13 free now. For years, I'm gonna be experiencing more things. So you know, I'm not always around when I'm traveling for work, Toe. Have those conversations with him about what he might see, it school or the things that he might experience. And when he's away from home, the world's pretty big and games gonna have to make choices just like all kids do in the future. And we started to have those conversations about healthy choices as a teenager. The things that he needs to do that make him different than the other kids. And I guess working and traveling as much as I have in the recent past. My miss out on some of those opportunities toe discuss those things. Smoking, drinking drugs, just like you have normal conversations with kids. But they're different CHD kids. They're different. They have to be even more selective and how they manage their healthy lifestyles. Moving forward things like exercise eating rate. Having those conversations, I have to schedule them a little bit more than I thought, being a traveling down.

spk_3:   42:34
All right, you're not having them every day. All day long because you're not there every day, all day. But even if he were, he wouldn't be there. He would be a rule would be doing his extracurricular activities. It sounds like he's quite an athlete. And so even if you were home, he might not be there anyway. So do you think that maybe having to schedule it actually makes you think about it a little bit more? Make sure that you don't have opportunities to talk to him about.

spk_4:   42:59
Yeah, definitely. Anna. Yeah. You bet. You bet. Yeah. And then, of course, figuring out what to say and how to say it is always good when you're dealing with teenagers. So I appreciate the extra time and ability. The planet?

spk_3:   43:12
Well, Michael, what advice would you give to parents who can adjust their schedules so one parent could be home with their baby in those early years, like you and your wife are able to do

spk_4:   43:22
echo what Chris said, You know, you just make the decision that, you know, you kind of wave The insurance plans you're both looking at are weighing the salaries. You're weighing the family input. Your you're wearing all of those things and, you know, asking for advice. Talking to folks in the community, talking to your doctors, talking to your family members, being open to suggestions about how to manage it. We all think we can manage our lives and our families just fine. But really being open to suggestions and learning from other people's experiences, I think is the best way, because when it does happen but not gonna ever turn out like you thought it would be justice. It'll be just as great or even better. Not a bad thing, but it just won't be what you thought it would, so you might as well learn from others if you

spk_3:   44:08
can. I think that's wonderful. That beautiful advice. Thank you so much for coming on the show and sharing with us, Michael and also for contributing to the heart of a father. I re read your essay before coming on the show again, and it took me back. You know, it took me back to when we were working on the book and how we had conversations back and forth and how I was communicating with you and all of the other dads, and that was a really special time I actually spent 10 years working on that book and developed a really special relationship was so nice when I have a chance to reconnect and find out how the kids are doing. I'm so excited that gave is doing well and that you seem to be doing so well. And here we are, talking about work, dad or stay at home dad. So don't leave yet. We do have to take one for the commercial break, but when we come back, we will all be in the studio together. You and Chris and I, and we'll have a chance to say a few more things before we have to conclude the show, though. Hold on. We'll be right back with a heart to heart with Anna,

spk_1:   45:07
take this hot industry we're offering. That's a mechanical hot. And he said, now that I've had enough to give it to someone, my father promised me, a golden dressed twirling held my hand and asked me where I wanted to go. Whatever stripe for conflict that we experienced in our long career together was always healed by humor.

spk_2:   45:28
Heart to heart with Michael, please join us every Thursday at noon, Eastern as we talked with people from around the world who have experienced those most difficult moments.

spk_3:   45:37
Welcome back to our show. Heart to Heart with Anna, a show for the congenital heart defect community Today we're talking with hard dad Chris Perez and Michael Madsen. We just finished talking with Chris and Michael about their experiences of being working Dad, Michael being a stay at home dad with his newborn and then becoming a working dad. I want to thank both of my guests Kristen Michael, for coming on the show today. I think this is such an important issue, and it's certainly one that all of us face when we're told that we have a child with a congenital heart defect, and I think that a lot of people don't realize some of the decisions that have to be made. I think Chris and Michael did a really good job of pointing out a lot of the different aspects of our lives that are affected by having a child with a heart defect. Now we're going to all be in the studio at the same time, and I'm going to give Chris opportunity first. Thio Hey, if he has a question for Michael or if he had another thought after our segment. Or when I talked to Michael if it made him think of something that he would like this year before we end up having to close the show. So welcome back, Chris.

spk_0:   46:41
Hey, Happy to be back. I think if there's one thought I had to share, it was definitely from my perspective. Thank you, Michael, for sharing what you shared. A great detective for the things that having kids my age think I have to look forward to when my kids get the team. They're only 19 months. Definitely that good perspective. And it really ties in. Well, what I was talking about about making a the connection. My heart child has been young. I have yet to go through all the things that there are two go through. I've been through a lot, but not all of it. So just listening to Michael talked about conversations that he has had gave and things like that. How those types of things are different really made me to stop, huh? Have you thought about that before? And those types of things that I encourage, you know, our parents stop and do stop and continue to make those connections. Because when you make it through surgery, number one or two or three being of our parents not gonna stop and the challenges are gonna stop. We have to constantly aware and share those things. So thank you, Michael, for sharing. And I will pack those away in my mind for years down climbing up the other Number one Michael said This well, we have this conversation for sure,

spk_4:   47:48
coming any time.

spk_3:   47:51
It's always so much fun for me to listen to parents of newborns, their parents of just babies, infants, little ones that aren't even really walking yet and aren't really talking much because it takes me back to what it was like when Alex was little. And it seems like just yesterday, doesn't it, Michael?

spk_4:   48:09
Yeah, it does. No, listen to Chris. I mean, those emotions come back and start to think about the details. There's the big picture part of it, which is, you know, they went to surgery and there was this and that. But then the little details is stuff that I fear sometimes just because it was romantic at the time, but also those are some of the best memories of my life. So listen to him. Talk about his experience with no one has been for me during this during. This is Well, I appreciate that. Thank you, Chris.

spk_0:   48:38
Happy to do it. Thank you. Taking part in this with me.

spk_3:   48:42
I love how both of you felt that it was important to share through writing, and that's really fairly unusual. One of the reasons it took me 10 years to put together the heart of a father was because it was difficult to get men to talk about their feelings and to be willing to share different aspects of their lives that were affected by having a child with congenital heart defect. So I think you two are very unique in your willingness to come forward and first to share in writing both of you, Chris three. You're Blawg and Michael Tree or contribution to the book and not to be talking about it on the air. So I want to commend you for doing that because I have a feeling you're voices would echo so many other heart dad's voices who might not really know how to articulate what it is that they want to say,

spk_4:   49:26
Yeah, I don't know how many times I had to rewrite that that chapter of the book just because it's not It's not normal for a Midwestern man. Talk about his feelings, but it is. It is what it is. You know, I was grateful for the opportunity. Yeah, no, I think it's important. Do that. I mean, that's That's the way you're gonna process it. That's the way to do it. I think over

spk_0:   49:47
Sherry, I agree on Yeah, I agree. It's hard to relive those memories sometimes when you have been right about it. But I think it's healthy to just sit and write. And I remember I I wrote some log close. I think it was like my 100 post. I honestly don't really know if people actually read this thing because I never times that I said I don't know if anybody's reading that Should I keep doing it? And on I just kept on pushing the night and I did get a comment from somebody says we're reading. I promise And I had a chance to make connections with that and mall and a lot of the really great people that has led the log and get to pull up the captaincy like who read it and from where. And I'm like a somebody from Iran read it today, and that's exciting. But, you know, I'm hoping that it makes some kind of connection with them because I'm just really hard to put yourself out there, really, dig up those emotions again for me. I think it's it's been really worth it and I hope that one day older he'll be able to see that day. While my dad really did a lot for me or he'll just think I'm nuts, I don't know. But I think it's over.

spk_3:   50:48
I think it's worth it to. We lose a certain amount of anonymity and it makes us vulnerable to do that because it opens us up to criticism from others and or pity which none of us wants. We don't want anyone pretty. We would like people's empathy. We'd like them to understand or try to put themselves in our shoes, but the last thing we want is for people to PDS, and I think that by writing and communicating, whether it's on the air like this or in writing we did not, But I think it's a valuable thing for us to do. And I think the pros far outweigh the cons. Well, gentlemen, I can't believe it, but our show has to come to a conclusion. Now. We are, you know, like you believe that it happened so fast. Thank you so much for coming on the show I had. Now that your feelings in your thoughts and words, they're going to echo what so many other heart dads and probably heart Mom too are feeling regarding whether or not they should stay at home or go back to work. So that doesn't conclude this episode of heart to heart with Anna. Please come back next week on Tuesday at noon, Eastern time. Until then, please find them like us on Facebook. Check out our website heart to heart with anna dot

spk_1:   51:53
com. And remember, my friend, there is thank

spk_2:   51:58
you again for joining us this week. We hope you've been inspired and empowered to become an advocate for the congenital heart defect community. Heart to heart with Anna, with your host, Anna Gorsky can be heard every Tuesday at 12. Noon eastern time. We'll talk again next week.