Encore Presentation of "Surviving the Teenage Years with a CHD"

How difficult is it to go through the teenage years when you have a congenital heart defect? How does having had open-heart surgery set a person apart from their peers? What advice do these Guests have for other teens with congenital heart defects?

Transcript

spk_0:   0:00
I hope you'll enjoy today's encore presentation. That's from our very first season when I told my son had a congenital heart defect and that he probably wouldn't arrive his first surgery. The doctors then went on to tell me that you probably wouldn't survive this segment surgery, either, But then, if he did, they probably wouldn't survive the surgery. The recommendation was for my husband and me to take her son home, to love him for what little time he had left. That was not an option for us, but I couldn't help wondering while we were in the waiting room as he was having his Norwood procedure that Alex would ever see. Age five, much less the teenage years leading so many teenagers and adults over the last 21 years has been so uplifting for me. And I hope you'll be inspired by the three ladies featured in this episode

spk_1:   0:48
way. Welcome

spk_2:   0:54
to Heart to Heart with Anna, featuring your host Anna Dworsky. Our program is a program designed to empower the CH D or congenital 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:   1:21
Night episode apart 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 advocates the information. Today's episode is called Surviving the Teen Years with a congenital heart defect. Thanks to advances in medical science, 90% of the baby's born today with a congenital heart defect, or CHD, will live to adulthood. That means 90% of today's babies well, Sunday be teenagers. For the first time ever, there are more adults, a life of congenital heart defects, been babies. What does this mean for our aging CHD population? What kinds of struggles, medical or otherwise, to our Children with critical PhDs or C C. H. D s have to endure? Each of our guests today was born with a C C H D. About 25% of congenital heart defects are considered CCH D's Children with CC HDs needs surgery or other procedures within the first year of life. They are at risk for death or disability if their heart defect is not detected soon. after birth. The heart defect classified as C c h d. Include one or more of the following court ation of the aorta. Double outlet, right ventricle de transposition of the Great arteries as beings anomaly Hyper plastic left heart syndrome. Interrupted aortic arch pulmonary atresia with intact septum. Single ventricle, total anomalous pulmonary venous connection. Tetralogy of Hello, bicuspid, atresia and trunk. It's arterial assis. Some people with treated C C H d Have you related health problems later in life? However, long term effects of CCH D can include the delay, development and reduced stamina during exercise. Today we'll meet three adults with T C H D. Who survived their teenage years and have you been thrived as the mother of the sun with a C C H d. I wondered, what would his quality of life be like Today we have three young women who will share with us what their triumphs and challenges have been during their teenage years. Our guest today are Monica Mossy, Sarah McFadden and Jenny Busta. Monica Mossy was born on September 6 1984. Track with trinkets materials this type, too. She has had three open heart surgeries and is Currently 29 years old, Monica has dealt with feelings of fatigue and lethargy all her life. Throughout her life, she has needed oxygen, wheelchairs and other assistive devices. Her dependence on this equipment has not deterred her from living a full quality life. She graduated from high school with honors and earned an associate's degree in business with honors. At three years of age on, Monica was fitted for bilateral hearing age. She has a severe, too profound hearing loss. But thanks to four years of speech therapy, her speech is easily understood. Now cochlear implants allow Monica to hear better than her hearing aid ever did. Monica enjoys being in the presence of her close knit family and friends. She loves all of God's precious animals, especially her cat. Lead by Monica is hopeful about the future and looks forward to using her college degree with part time employment. Well, meet Sarah McFadden and Jenny Booth's death later in our show. Thank you, Monica, for being on the show.

spk_4:   4:44
Thank you.

spk_0:   4:46
So, with your teenage

spk_3:   4:47
years difficult for you, Monica, what do you think was the most difficult experience you had during your teenagers martinis?

spk_4:   4:54
You rushed difficult for me, especially with out in the seventh and eighth grade. Does with lot of billions from appeared. It was often singled out from class corrupt a spastic school event because I was not physically able to do them. There were times when I would get envious and jealous from appear that they were able to have fun, and I cannot. Her mother in my home life. My teenage years were not that difficult despite numerous How's it? Use that back an optical the PMS including me like my brother and sister and allowed me to experience no to experience things, Norma teenagers good and spend the night at French couches were even have a friend over, even know could be further to bear.

spk_3:   5:42
Well, that's good to hear. So, really, even though you did experience him bullying and that is what was probably the most difficult than you experience, you do feel that you had a fairly normal teenage growing up. Yes, well, good. So you told me before the show that you didn't even realize that you were considered hearing impaired until you were in seventh or eighth grade, which is lost when the bullying started. So that's when you would have just started to be a teenager. And you also told me that you're hearing in Pyramid was not as influential in your life as your heart defect. Waas. So can you tell us why your heart defect was a bigger issue for you?

spk_4:   6:24
It was a bigger issue for me because you affected the way I live. And it was the most important in the most prominent thing in my life. And I had to just my dearest cadre, according to how about whether or not ah, hiring Apartment Joe for me, my hearing last was normal. Uh, my heart condition. I knew there's not Norma.

spk_3:   6:54
Did you have a lot of doctor's appointments? Yes, I did. Of what kind of doctor's appointments for today?

spk_4:   7:03
Cardiology apartment, Petey. Optical Point Match. Um, hot cartridge aging I made of hot good. Ah, here, ideology appointment, bathroom thought then only now the hospital.

spk_3:   7:21
So it sounds like you had appointments more frequently than just once a year, or you've been twice a year, right? So I was happy to see that you were able to graduate from high school despite the appointments that you had and despite the bullying that you had to endure. So what advice would you give the other teams who are experiencing difficulty in school due to their heart defects?

spk_4:   7:47
Most important thing to persevere and pastoral because in the long run is Robert. And it's also important to have so a lot of two poor, rather a guidance counselor at school have burned family. If the me without the support of my family, Bunge in my faith in God, I would not be real, I am today

spk_3:   8:17
absolutely, very nicely said. You struggled hard to earn your college degree, but you did it, and I was so excited to hear how you persevere to attain your associates degree. Can you tell us what it took for you to earn your degree and waited? Why she would give the other teams who want to go to college but are afraid that they lack the stamina to do so. It took a while

spk_4:   8:43
for me to earn my degree because I was not physically able to go on campaign, so I took along questions Come home and I was only able to take a course that's a master, even though I did try so the value. I would have it. Maybe at a rate a year, make your your body to really houses are. And when you know your body, then go plot and just cry it out. And if you can't do it, that's okay. Because there's other options in the contract you can do on lying part time.

spk_3:   9:30
I really like how you showed everybody that Yes, I only did one course at a time, but I did it and that the perseverance really does matter to you. I think sometimes Just do me one course at a time like that. You really get to savor each of your classes, too. Yeah. Did you feel that it helped you to understand the material even better, since you only had to focus on one subject at a time.

spk_4:   9:58
Yeah, You're good. Because it is hard for me to retain lack of information outline for just why I could really focused and enjoy a in have fun Roda

spk_3:   10:11
e. I know some people find online courses difficult. Where did you go to school with your online courses?

spk_4:   10:19
Community college as the mark.

spk_3:   10:22
Okay, Very good. So did you ever meet with your teachers?

spk_4:   10:26
No, I didn't I would talk to them by the media.

spk_3:   10:31
Very good. So it's good to know that there's that option. Because I know some people do The Phoenix Online program are there are a number of online programs, but you were able to do it through your local community college so that our listeners know that should be something that you check into. Oh, and I didn't say in the intro that moniker earned a 3.9 grade point average with her associates degree. Congratulations on having such a splendid transcript, Monica.

spk_4:   11:02
Thank you.

spk_3:   11:03
So now you told me before we started our conversation here that you are currently unemployed, but you're looking for a job. So can you describe to me what your dream job would look like?

spk_4:   11:16
I would love to work arj an administrative assistant. A well known invasion nation in work. My very after couple Lotte got a desperate in time. My house allows me to work from home, so I would liketo broke from home are a first for Ministry of Assistant.

spk_3:   11:40
Okay, Excellent. So all of you listeners out there, if you have that kind of position, get in touch with hearts a heart with Anna, and we'll put you in touch with Monica Mossy Monica. Thank you so much for sharing your advice with our listeners, and we're coming on the show today.

spk_4:   11:56
Thank you for having me.

spk_3:   11:58
It was my pleasure. Now it's time for a commercial break, but don't leave yet. Coming up, we have another adult with a congenital heart defect who will be sharing her story with us. Find out how she dealt with the typical temptations teenagers must deal with when they go off to college. When we return to the heart to heart

spk_2:   12:16
with 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 Hannah Dworsky has spoken around the world at congenital heart defect events, and she is available as a key note or guest speaker for your event. Go to heart to heart with anna dot com to learn more about booking Anna for your event. You can also find out more about the radio program. Keep up to date with CHD Resource is that information about advocacy groups as well as read Ana's Weakly plug. Anna wants you to stay well connected and participate in the CHP community. Visit heart to heart with anna dot com. Today 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 Gorski at Anna at heart to heart with anna dot com. That's Anna at heart to heart with anna dot com. No back to heart to heart with Anna Back to our show

spk_3:   14:09
Heart to Heart with Anna, A show for the congenital heart defect community. Today we're talking with adults with congenital heart defects. Monica Mossy, Sarah McFadden and Jenny Busta. We just finished talking with Monica Mossy about her experiences with growing up with a congenital heart defect, and now we will turn our attention to terror. McFadden term. McFadden was born on February 3rd, 1992 with hypoplastic left heart syndrome. She has had three open heart surgeries and spent a total of two years in the hospital when considering all three of her surgeries. Since her front hand procedure, terror has been able to do things just like heart healthy Children. She graduated from Ramapo High School in 2000 and 11 and it's currently attending Ramapo College in New Jersey, where she is working toward a degree in social work. Carrie has had physical limitations just about all of her life. She cannot play competitive sports, but she's just wins and can do other activities like Baking, watching his short films and taking photographs In fifth grade, terror was diagnosed with a process in disorder. This makes reading long passages are doing complicated math problems especially difficult for her. Despite her difficulties, she had found ways to overcome her problems. An active advocate and a congenital heart defect or PhD community terrorist supports little hearts and CHD coalition. We'll meet Jenny boost that in our next segment. Thank you, Tara, for coming on heart to heart with Anna.

spk_6:   15:40
Uh, thank you very much for having me.

spk_0:   15:42
Can you tell us

spk_3:   15:43
what it was like for you going to school as a teenager? Like, did you attend private school or public

spk_0:   15:49
school? I attended

spk_6:   15:51
a public school. It was no different than any other student. Probably Gym class is the hardest because everybody was running around. But once I wearing toe, except that I I can't do others are able to do. I was fine. And my gym teachers were able to work with May. And then once I figured out that I have a processing problem, I actually went from getting seized AIDS, and I was able do a lot better in school. And I learned to be a great self advocate. So whenever I started the year off, I would go to my teachers and tell them that I was affiliated with the Office of Special Service is and get the accommodations that I needed. Did you best?

spk_3:   16:41
That's amazing. So you went from a student who was just barely hanging in there too, And a student?

spk_6:   16:47
Yeah, I was actually like I remember in fourth grade I was getting like, seas and, like, really struggling through school and then fifth grade. When they finally gave me the accommodations that I needed and I got tested, I was getting a little like, Wow, and my parents actually wanted me to get tested beforehand. But the school didn't think that I had a learning disability. And then when they finally convinced the school the school finally touched me, my parents were like we were right and the fact that I went from getting CS A's with just like when

spk_0:   17:26
you're getting, like,

spk_6:   17:27
extra time on tests, or like or like getting the notes because I can't write them down fast enough. It was such a major difference, and it has helped me so much, and I'm able to do so much better in school than I would have been. And

spk_3:   17:42
that's exactly what I was going to ask you Next was what kind of accommodations where you give in and who had to come up with the accommodations? Um,

spk_0:   17:52
I think it could

spk_6:   17:55
be I mean, I was young at the time. We at first happened, and now, even in college, I meet with my counselor and I say what I think I need for each class. So I think it's based off of the testing they originally do, and they decide what type of accommodations will be best for you. But I mean today, Like I took for a while on. And I took a long time on an exam that wasn't supposed to take that long. And one of my counselors actually suggested a computer to be used. So I decided to do that and the computer to me so much longer. So I decided I'm not doing the computer. I'm gonna hand right. And even though it take me long to handwrite because my hand and we'll cramp up, up, I, um it's kind of like a learning process. I had to, like, just be like, Okay, I'd rather handwrite it. Then type it, cause with all the typos I was making typing the essay, it was taking forever. And I was getting frustrated. So I think it's more like a learning process of of knowing what I need and what I don't need.

spk_3:   19:03
Yeah, so it sounds like a little bit of trial and error interview. See what works for you.

spk_6:   19:08
Yeah, but then once you figure it out, but it makes all the difference in the world.

spk_3:   19:12
So you said something about getting extra time? Of course, that would be a teacher or maybe with a counselor supervise you if you needed extra time beyond what the class is doing for an assignment or a test.

spk_6:   19:25
Well, when I was younger, I would get extra time. I would take the test in class, and then just if I needed at the time, I'd actually have a class called like, um, it was like a resource class. Then they would just give us, like time to do our homework or help on. It would be like a little help on any homework assignments you had, or I'd be ableto to finish my test in that class. But now that I'm in college, I actually so out like a test props during form, and I actually take my best in a and like my own little room, which is nice because there's nobody else distract me and I you just fill out what accommodations you need. So I put I need reduced distraction. I need extra time, and I need my own testing room and There's also I could get, like a white, like a white sound machine. They are. There are accommodations for people who are visually or or or hearing impaired. So they have all these different accommodations that people are able to get. And it works out really nicely in my school. Just they're really they're o s s department is really good. And I'm able to get every combination I'm able I need

spk_3:   20:48
for our listeners. You don't know what does O s s me. Special Service is Okay. So that's what if somebody is listening and they're like, I need some of these Service is to where do I go for this? They would go to the office of Special Service is, And there they would be able to talk to somebody who could help them to get the same kind of help that you're getting. So what kind of social life did you have as a teenager? Did you got a French houses for sleepovers? Did you have them up to your house? What kind of life was it like? Socially?

spk_6:   21:21
I was no different than all my friends. Um I hung out with them and stuff. If I wanted to go to sleep overs, I would go. Um, remember when I, like the first sleepovers are really had with my cousins and then when sleepovers with friends where they started to happen, I would actually nervous because, like, I have to make sure think my medicines So that was something I was kind of nervous about. But, I mean, most

spk_0:   21:44
of my

spk_6:   21:44
friends all know that I have a heart defect and they don't care. So they like we'll make, like thinking my medicine wasn't a big deal. And I mean, if you're not okay with that, you're obviously not that very good of a friend might all, actually. So I would just, um I mean it. It was no different than anybody else. Um, I was able to do and hang out with my friends and sleepovers. Personally, I I'm not a fan of a sleepover. I if I wanted to the person next day all just I'll just see you in the morning. They don't have a sleep over my house, but I was no different than anybody else.

spk_3:   22:30
Okay, well, let me ask you this. It seems that so many people today have piercings and tattoos. Do you have any? And if you do, did you talk to your cardiologists before him? The only things

spk_6:   22:46
that I have or I have, um my ears pierced, and I haven't really thought about getting any other piercings or tattoos. I think I have enough scars that I don't attack you. My scars are enough. And at one point I was thinking of getting a tattoo to symbolize, like what I've been through in my heart defects. But then I was like, Wait, no, I have a giant scarred on my chest. And I don't need a tattoo to symbolize that. I already have a scar that symbolizes it. Um, so I've never really discussed that with my cardiologists. I don't think he would. Um, I don't think he would like it, though, because piercings called infection and statues. It is just more problems that I wouldn't wanna encounter.

spk_3:   23:38
Right. That's what Alex is. Just had told him before was that the piercings and tattoos don't necessarily cause infections. But if they dio in a person who has a critical congenital heart defect like you and Alex, you, it could cause problems with their heart that you don't want to encounter, just like you said.

spk_6:   24:00
Yeah, I wouldn't risk it.

spk_3:   24:02
Yeah, it and it does seem like a bit of a risk. So drugs and alcohol seemed to be very prevalent not just on college campuses, but even on high school campuses. Were you ever tempted with alcohol or drugs? And if so, how did you handle that situation

spk_6:   24:21
present Wherever you go and I'm president with, um almost every day of college. Andi, even in high school, I just learned to not get involved. And actually, when you say that you have a heart defect, people are more interested in hearing what heart defects you have and more about that than pressuring you to drink. They can adjust our like They're just, um they're more interested in the heart defect they don't even care about like,

spk_0:   24:53
Oh, wait, you can't drink. Wait, what's your heart defect?

spk_6:   24:56
And and then you're going to that topic. You changed the same with drugs. Yeah, I'm ableto I'm able to get out of situation and change and change topics with same phrase definitely works out.

spk_3:   25:11
Well, that is good to know, because I know it's a heart parent. That's one of the things that you worry about you all are already taking enough drugs. You don't need to introduce alcohol or other drugs on top of that, because I could just be the more dangerous. Here we go again, talking about not wanting to encounter its risks. So 10 wounded by she would get two other teams who have a critical congenital heart defect like you do that would help them to survive their teen years. Just live

spk_6:   25:40
life as normal as possible. You may need to make some changes and adapt to different situations, um, in in different ways. But that's fine. And just surround yourself with people who you enjoy being around and accept you for who you are. Don't let people pressure you.

spk_3:   26:06
I love that much. That's true whether you have a heart defect or not. Wouldn't you think?

spk_6:   26:11
Yeah, definitely. I mean, it's not just a heart defect. If anybody I agree

spk_0:   26:18
well, thank you so much

spk_3:   26:19
terror for sharing stories and experiences with us on your advice. Now it's time for another commercial break, but don't go far. Stay tuned to find out how another adult with a congenital heart defect dealt with bullying while growing up, Find out how she not only coped that found a way to overcome the anxiety she developed due to the bullying when we returned With Heart to Heart

spk_2:   26:41
with Anna Dworsky has spoken around the world at congenital heart defect events, and she is available as a key note or guest speaker for your event. Go to heart to heart with anna dot com to learn more about booking Anna for your event. You can also find out more about the radio program. Keep up to date with CHD Resource is that information about advocacy groups as well as read Ana's Weakly Blawg. Anna wants you to stay well connected and participate in the CHP community. Visit Heart to Heart with anna dot com Today, Anna Dworsky has written several books to empower the Congenital Heart Defect or C H D Community. These books could be found at amazon dot com or at our 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. 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 Gorski at Anna at heart to heart with anna dot com. That's Ana at heart to heart with anna dot com Now back to heart to heart with Anna. Back to our show.

spk_3:   28:34
Heart to Heart With Anna, A show for the congenital heart defect community. Today we're talking with adults with congenital heart defects. Monica Mossy, Sarah McFadden and Jenny Boots. We've heard from Monica Masi about her experiences with growing up with the congenital heart defect and other handicapping condition, and we talked with her McFadden about how she has devoted to teenagers. And now we will meet Jenny, Busta Jenny Boo, says the 28 year old survivor. She was diagnosed before birth with hypoplastic left heart syndrome, or H L. A chest. In 1985 Jennie's medical professionals knew no other older survivors. There was a miracle that Jenny provide. She was the first HHS babies from U. C. L. A medical center to make it. Jenny underwent her first open heart surgery, her first day of life and her second surgery, the Fontane. At 17 months of age, when she was three years old, she received a pacemaker. Since then, she has had several procedures, including pacemaker battery replacements and catheterizations. Growing up with the C H D was difficult, since many of Jenny's peers I didn't understand what made her heart different. She appeared healthy, but she was functioning with only half a heart, something nobody could see. She was currently happily married and living in California. She reaches out to CHD families all over the world to give them hope. She tells hohs families that her faith in dependence on Christ is what keeps her going every day. Welcome to heart tart with Anna Jenny.

spk_5:   30:05
Thank you for having me. I'm honored to be here. Uh,

spk_3:   30:09
I'm so excited to be talking to you. Let's start with something that I know is near and dear to your heart. But that wasn't part of your opening biography. When did you tell us your ah Campa Corazon experiences let our listeners know who can attend Camp Corazon and what it is, what the purpose

spk_0:   30:26
is. Sure, kid. So

spk_5:   30:28
core is only started in 1995 and I was one of the first campers to ever go. It's a camp for Children with who've undergone open heart surgeries and, you know, people like, like us. Um, and, uh, it was a really big deal for me to be a part of this because I got bullied a lot, and I was put down a lot because in my heart condition, and it was the first place where I can, uh, I felt like I actually belong because there are people around me who knew what it was like to have a heart surgeries. You know what it was like to lie in a hospital bed for days or weeks, you know? And so we were just really there for each other. It was more than just a five day camp on an island. It was, You know, we really grew, um hi. Close knit friendships that have lasted all these years even now. So and, um my anybody with a child that has condemned the heart disease from the age of 7 to 17 can go to camp accord. Um um in California on Catalina Island.

spk_3:   31:40
And what I love about this camp is that it's not just the kids out there. There are nurses out there. There are doctors out there. You have lots of support, just in case you start to not feel well. Isn't that right?

spk_5:   31:52
Yeah, that's right. And in fact, the people who started it, we're doctors and nurses, and so they have a whole team out there. They can run a literally a small emergency room if needed. They have a helicopter on standby or, you know, if kids get sick, they can go home on a boat, you know? So it's, you know, it's a very safe place to be, and I actually my mom loved it when I tell them that she was a little scared when she first let me go, because it was my first time away from home ever. And I said, Mom, I'm actually gonna be paper there. It will be at home because of all the doctors nurses there. I know

spk_0:   32:35
what you're right.

spk_3:   32:40
And I love the picture. She actually wrote about your camp experience for my book, The heart of a mother. And I love how she captured you. Turning a waving goodbye. I could tell Justin that photograph you look so excited about going on. Yeah, they play well. And you might tell him that there is not only were you a camper, but you've also been a counselor. Can you tell us about that?

spk_5:   33:04
Yeah. I got involved with a counselor once, every 18 and I've been counselor almost every year since this because I get to, you know, help out the kids now that are going And, um, no, I get to tell them, you know, I have a scar, and they could, you know, you could see it when I were shirts. So you know, so often on and they you know, for me as a camper, you know, going remembering as a camper and seeing the counters with scars was a huge deal for me back down. So I really like the fact that I get to do that to the kids now, and it means it really means a lot to me that I could do that. Well,

spk_3:   33:53
it seems like it gives you a group you can identify with. And you didn't really have that when you were in school. Isn't that true?

spk_5:   34:00
Right? It was. It was really the first time that, you know, I I always thought, you know, I don't know. How long am I gonna live? Am I gonna live to 20? No. 30 you know, I don't know. And so it was the first time that I saw adults living with it and that just I mean, it was like, changing for me because I was like, Hey, she has a scar. She's happily married or he's going to school like it was so encouraging to me and I There are no words to describe. You know what, what that meant to me,

spk_3:   34:33
and I know that you had been doing with other families. When you go visit families and when you talk to families on the Internet, you're providing that picture of hope for all of us. Now, I want to thank you for doing that, Jenny, because I know I have looked to you many, many times to see what I can maybe expect with Alex.

spk_0:   34:51
Even now, boys and

spk_3:   34:52
girls are really different, but just nothing that you had made it that far and you've always had such a positive attitude. That's one of the things I love about you. So I do remember when you were a little girl. You and I have known each other for a long time when I was thinking about how long is by known Jenny. I've known you since you were a young girl, and we used the instant message with each other and height. Do you

spk_0:   35:19
remember? That's right. All those years ago,

spk_3:   35:23
Long time ago. But I remember back then when you would instant message with me that sometimes you were really upset because kids were not being crying to you at school. Can you tell us a little bit about your bullying experience and why your mom decided to homeschool you?

spk_5:   35:39
Of course. Yeah. Um, well, let's see. I just They just couldn't see it. I mean, I You look at anybody like me on, we look normal. And so the fact that we're really stick on the inside and people can't see that it's like they couldn't understand it and they couldn't grasp it on. Maybe, you know, things were rocky at home or they felt insignificant. So they felt like, you know, they had to bring me down for some reason. And, um, you know, it's just it's a hard thing to go through. But I am really grateful that I got to, um that God gave me that opportunity because now I get to be there for young kids, you know, who are going through blowing. And I could actually say, Hey, I've been there on it really stinks. But, you know, it gets better, you know? And, um, some of the things like, you know, uh, they call me half hearted or, you know, you can't be my friend, because I can't run it as I can't run a passive you or something like that. And, um, when I would try and run around the, um, the school yard during P, they would literally come up behind me, shoved me to the ground and point and laugh and run off. And I mean, just really just really cruel things that I personally I wouldn't wish upon anybody. But at the same time, I'm like I said, I'm grateful for it. How

spk_3:   37:20
did you overcome your fear? So that must have been terrifying to have somebody come up from behind. So you're not necessarily looking at them, and you're certainly not expecting them to attack you and push you down. How did you learn to overcome the fear of people being behind you and possibly wanting to harm you?

spk_5:   37:38
I actually see 120% honest. Um, I have not gotten past that And public places, like airports or, um, amusement parks or like any anyplace where a big crowd of people I cannot get anxiety when people are walking behind me, even though, like I know that what could they want me to go around and, you know, run them laugh off like, um so But it's definitely, um it's something I still do it, you know, from time to time. But, um, what has really carried me through is, um um my dependence on Christ, Like I have said, you know, a lot and my face in that and knowing that, you know, in in someone 39 he says, I will give thanks to for I am fearfully and wonderfully made Wonderful are your works in my soul knows it very well. So I know that God has made me exactly who I am, how I was supposed to be. He makes no mistakes on I I really carry that through growing up like there's a reason for everything. You know, I may not understand it, but he knows. And that was good enough for me and it really waas you know, it was hard at times, but it was enough so well.

spk_3:   39:09
And then somebody very special came into your life and his money on this has Nick and eventually ended up marrying this special young man.

spk_5:   39:20
Yes, Um, making still over my life, um, cues, You know, my rock. And, um, we met when we were 14 years old. And and I think you remember this very well, man. A, um uh, we were It was online. And both sides of our parents don't go in a chat room. We did anyway. And I can't say that I'm sorry, but, um, because of where we are now, we're happily married. Um, per six years and counting. And, um, I love him faces. I mean, she's everything to me. Oh, so

spk_3:   40:06
it is, and I've had a chance to meet him, and he is the sweetest Swedish man ever. And I think he's like a have you, and I think you're lucky to have him to

spk_5:   40:15
thank you. I feel I feel really blessed, like, Wow, he's He's my husband, you know? I mean you he's just amazing. I could go on and on, but I won't

spk_3:   40:30
for being on the show. Jenny, I love talking to you and I think what you shared with our listeners is really important how, Even though you were bullied, you you looked to cry. She looked to something beyond yourself for strength and probably made you a stronger person. Don't you think

spk_5:   40:50
it really has? And that's why I'm grateful for the experience is and you know what life has taught me the good and the bad times. And it really came down to a choice. Do I want to, you know, spend my life feeling sorry for myself? Or do I want to give back Earth? You know, take the blessings and you know the challenges that God has given me and use it for good and use it for his glory. And that's what I'm all about. So

spk_3:   41:21
definitely that's a beautiful message. And I wish more people would feel the same way that you do. Jenny. Well, thank

spk_0:   41:28
you for being on this show. Jenny. It's

spk_3:   41:30
time for another commercial break. But don't it's, uh, it's almost time for our miracle moment. And today's miracle moment is written by Rita Scoggins. She shares a story about her teenage daughter's experience. But going on a band trip? When is a regular band trip anything but regular when you have a daughter with the concrete ical congenital heart defect going on that trip? That's when find out how this trip for a high school band from South Texas going to Colorado to ski turned out when

spk_2:   42:01
way. Anna Dworsky has written several books to empower the Congenital Heart Defect or C H D community. These books could be found at amazon dot com or at our 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. Ana's 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, Anna Dworsky has spoken around the world at congenital heart defect events, and she is available as a key note or guest speaker for your event. Go to heart to heart with anna dot com to learn more about booking Anna for your event. You can also find out more about the radio program. Keep up to date with CHD Resource is that information about advocacy groups as well as read Ana's Weakly Blawg. Anna wants you to stay well connected and participate in the CHP community. Visit heart to heart with anna dot com. Today 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 Gorski at Anna at heart to heart with anna dot com. That's Anna at heart to heart with anna dot com. Now back to heart to heart with Anna Welcome back to

spk_3:   43:54
our show Heart to Heart with Anna the Shell physic congenital heart defect community. Our purpose is to empower members of our community with resource is support and advocacy information. I want to take another moment to thank my guests today. Monica Masi, Tara McFadden and Jenny Busta. All three of these young ladies, just like the young lady whose story I'll share with you in a moment. We're born with critical congenital heart defects. Aulas Asian ladies were born with an invisible birth defect. For the most part, C C HDs cannot be seen nearly time Anyone sees anything amiss is when our heart warriors dare to go bare chested or expense. A significant portion of their tour says so that people can see their scars. Monica has an added invisible defect with her hearing impairment. These invisible D sex can cause confusion because our heart warriors appear so normal. But we know that extra precautions often need to be made. Such was the case with Rita Scoggins regarding her daughter Victoria. Victoria was born with C. H. D. Is too. She was born with Try Custody Atresia, an atrial septal defect of ventricular septal defect occultation of the aorta and in addition to the typical three surgery repair for single ventricle hurts like Victoria's. She also had to have eight stents put into her heart. Is it any wonder her mother might be a bit concerned about taking her daughter from South Texas all the way up into the mountains of Colorado to go skiing. Our miracle moment, called Victoria Ski Trip, is on page 2 82 of The Heart of the Mother and the details. One mother's heroin experience with taking her single ventricle post Monty and daughter into a very high altitude to participate in a band competition. Rita Rights In general, the trip was good, and Victoria did fairly well. After 30.5 hours on the bus, we finally arrived in Breckenridge. Since we were late, we had to go directly to the high school to perform. The band did fantastic and brought home several trophies. Victoria was doing fine and even managed to play her clarinet for one of the songs. By the time we got to the hotel, it was after midnight. It was almost 2 a.m. When we finally got into our rooms. At this point, Victoria was not feeling well, and I gave her oxygen. She slept well and planned to get up at 7 a.m. To be fitted for skis. Well, we got up a little bit later, than the match. But we did go down to be fitted. I waited in the line, as she said on the sidelines. She was bound and determined to ski and was saving her energy by not standing in line with me. After I had been in line for about an hour and was almost at the end, she came up and I asked her if she thought she would want. If I asked her if she could walk in those keep it. She looked at me and said, I don't want to do this Boy, was I glad. By this time she was feeling very bad and I gave her oxygen again. We went on to lunch, but she would not eat. Later that afternoon, we were walking around the town oxygen, tank and toe and used just needed. It is a beautiful town. Later in the afternoon, I let Victoria go into town with her friends. I was feeling sorry for her because she had been spending most of her time with me. She did fine in town and did have to use the oxygen a few times. I met them at Pizza Hut, and by then she was not feeling well, could not eat and threw up. Yes. The worst part, though, was that she was almost out of oxygen. We went back to the resort and I tried to find a place to refill her tank.

spk_0:   47:44
What a pain. No one

spk_3:   47:46
could refill it. Meanwhile, one of the boys was getting really sick. He had not been out of bed all day. And so we decided to take him Victoria and a girl who had bronchitis to the emergency room in the next town. Victoria was saying so that they could prescribe oxygen for her. She was feeling fine while we were there. As a matter of fact, her oxygen saturation levels were 99. I was surprised at that. The doctor there sent us home with oxygen for the night and the next morning and prescribe the same for the girl with bronchitis. The boy was admitted to the hospital overnight with high altitude sickness. He had the worst warm and had fluid in his lungs. We were at the e. R from about 7 p.m. until 1 a.m. While we were there, it started to snow. It was so pretty. We were all impressed. Victoria woke up the next morning with her appetite much improved, and I think it was because she was on the oxygen all night. We left Breckenridge in man after picking up the boy that was in the hospital, and 29 a half hours later we were back home in Harlingen, Texas. It was such a long trip, a total of 60 hours on the best and only 36 hours and Breckenridge. I asked Victoria what she had learned from the trip, and she said, I can't live there. She said that even knowing what she did, not being able to ski and feeling bad and having just been time with me that she would not have wanted to miss the trip because she had fun and enjoyed and really enjoyed the town. I'm glad that she was able to make this trip and that things went as well as they did. I am so glad that this trip is behind us. I was really dreading it. The bus ride was the worst too many hours. The kids were all great. I couldn't believe how well behaved they all were. They each deserve a medal. I'm glad that Victoria was able to make the trip. I think it did her good to see that she was not the only one affected by the altitude. She did not get to ski, but I do not think she was crushed by that. Disappointed but not crushed. That concludes Rita's essay, and some people who are not veteran members of our heart community may not understand why I chose that essay as a miracle moment. It's a miracle moment to me because, as the mother of a son with a single ventricle heart, I wondered if Alex would be able to have the same experiences as his peers. I'm sure we'd I wondered the same thing. What our Children's heart defects prevent them from experiencing the same events their friends did with your heart to vex, prevent them from performing in a band, going on a class trip or living a life with challenges that wouldn't defeat them, Rita wrote about her daughter's trip. And while it wasn't a perfect trip, it wasn't perfect for two heart healthy teens, either. The experience disappointed Victoria, but it didn't crush her. I think she might have felt worse if her mother had prevented her from going on the trip at all. His parents of Children with critical congenital heart defects were challenged to allow our Children to experience from life events that may not have perfect outcomes, but that allow them to belong with the herd healthy peers and allow them to experience age appropriate adventures so that they can live a quality life. Raising our Children to live their lives in a protective bubble is contrary to what any parent wants. But in the heart world, the fear is that we must do that to protect them. Read a story shows us that, given the right precautions, such as bringing portable oxygen and a responsible parent for the trip, our Children can share common experiences with their peers and survive.

spk_0:   51:32
Thank you for listening today. Please come back next week on Tuesday at noon for a brand new episode, Budge February is Hartmut and hard to Harvard. Anna is going to be featuring a radio show every single day during the month of February 2016. Please find it like a dumb face. Check out our website heart to heart with Emma dot com, and that's where you'll see the schedule for all the shows that will be having in a month of February. Check out our cafe press boutique, follow our radio show on LA talk radio and especially on Speaker, because if you can help us get enough followers on speaker that we can petition I heart radio to carry our show. And then people can listen to this show in their cars. So thanks again for listening. We know that congenital heart defects touch people all over the globe. But remember, my friends, you are not alone.

spk_1:   52:25
Thank

spk_2:   52:30
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.