Heart Sister Now and Forever

Today on "Heart to Heart with Anna" Ayrton Beatty talks with Anna about growing up in Scotland with her brother Edward. She tells Anna what they had in common, what it was like going to school together and what friends they had and how she communicates with some of those friends today. She also shares what it was like to discover that her brother had a congenital heart defect. She shares how, 18 years ago, her life completely changed after an extremely traumatic event. Ayrton tells Anna what she does to help others in the congenital heart defect community and gives advice to other sisters of siblings with congenital heart defects.

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:   0:04
Welcome to heart to Heart with Anna featuring your host on a Gorski. Our program is 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 Anna George.

spk_2:   0:27
Welcome to the 11th Season of Heart to Heart With Anna. Today we're going to talk to ah, Heart Sibling about her relationship with her brother, who was born with a congenital heart defect. And the second segment. We'll find out what happened after his heart defect was discovered, and we'll conclude the show by talking with Garreton about what advice she has for other heart siblings. Today's show is Heart Sister Now and Forever, and our guest is a written Bt there. TBD is 33 years old and lives in the small town in Scotland. She is currently on disability but is studying for a psychology degree through the Open University. She enjoys the company of her cat, Alfie and her partner, J. Martin joins us today as the sister of a young man named Edward, 18 years ago, Curtains life suddenly changed. Today we're going to talk to her about what happened. So welcome to her tart with Anna Arrington. Hi. I'm happy to be here. Well, I'm very happy to have you. You and I have been talking on Facebook for what, three years? And so it's about time. You come on the program? Yes. So airtight. Mark, don't you start by telling us about Edward. Ah,

spk_0:   1:37
Edward. Hey, was born on the fourth of July 1980. He was an independent state, baby. He was massive soccer fun. Followed his team. Nottingham Forest throughout the years. Went to a lot of the games with him. You played football for the local amateur T on school football teams. And as he grew older, he watched the deejay local nightclubs on Did lot about work in the pops, on bars in the area.

spk_2:   2:05
How far apart

spk_3:   2:06
were the two of you in a jar? Iton

spk_0:   2:10
Edward, Just three years older than

spk_2:   2:11
three years older. Okay. What was it like growing up with

spk_3:   2:15
a brother three years older than you? Did you always feel protected?

spk_2:   2:19
Yes, enough way we were

spk_0:   2:23
close, but same time we did fight quite a lot, but that's normal for siblings,

spk_2:   2:27
right? I was just gonna say I think that's normal, especially for siblings who are a different sex because you don't have

spk_3:   2:34
as many things in common potentially as Children Who are the same sex.

spk_0:   2:38
I don't know. He used to tell me a full time for stating the story calls.

spk_2:   2:42
I'm sorry. Would you say that again? Sweetie, I didn't understand what you said. He

spk_0:   2:48
used to tell me a fellow of the time for stating all these toy

spk_2:   2:50
cause you would steal his story cars. But like Matchbox cars, something like that.

spk_0:   2:59
Yes. I'd rather play with them than the dolls.

spk_2:   3:03
Well, that's kind of cool. I hear stories about where brothers will, you know, kidnapped the Barbie dolls and decapitated Barbie dolls. But there you were. Stealing his cars is dead. That's kind of funny. Okay, so, um, did you two have a lot

spk_3:   3:24
of friends in common? Did you live in a neighborhood with lots of Children?

spk_0:   3:29
We went to the same schools that is lover on. We both played on school football team. So we got a lot mutual friends that way

spk_2:   3:36
on my sister

spk_3:   3:37
and I are two and 1/2 years apart in age, and when we were younger, we used to play together some.

spk_2:   3:43
But as we got older, it seemed

spk_3:   3:46
like that two and 1/2 years spread. And for us, it was three years in school because I was a summer baby and she was a winter

spk_2:   3:52
baby. Um, it seemed like we

spk_3:   3:54
didn't hang around the same people, especially as we got older. I was in high school. She was in junior high, you know, we went to different schools,

spk_2:   4:03
was the same. Was that the same kind of situation with you and Edward? The

spk_0:   4:07
school systems in the UK are different to what we are in America. We only have two schools. We have the primary school and then the high school. Okay, So even though those three years apart, I still knew a lot of each of his friends,

spk_2:   4:26
So were you also into soccer or football, as you call it in Scotland?

spk_0:   4:31
Yeah. That was one of the first ghost play for the school

spk_2:   4:33
team. Really? A. So your brother influenced you? Ah, lot in that area then, didn't he? He

spk_0:   4:41
says Tommy party was when he saw me training with the team.

spk_3:   4:44
Oh, that's so sweet. Was he a coach

spk_2:   4:47
to you?

spk_0:   4:49
He tried to be, but then I kind of started beating him.

spk_2:   4:51
Stop. I love it. I love it with a student overcomes the teacher because even more powerful, that's awesome. Well, the winter where he was proud of you. How awesome are you also into music?

spk_3:   5:08
Like what? Your brother was into music.

spk_0:   5:11
Not the same sort of music? No, he liked his dance music. I'm more of a metal person.

spk_2:   5:17
Well, we're going to take a quick break. Don't leave yet listeners, because when

spk_5:   5:21
we come back, we're going to talk to Air 10 about what it was like for

spk_3:   5:25
her and Edward when they became adults.

spk_5:   5:28
The most common here is why she always needed a lot of attention. She had strokes. Even though it's a national inclination to withdraw from the CHD community, I think being a part of it helped me be part of a solution. Heart to heart. With Michael, please join us every Thursday at noon. Eastern. I'm Michael, even on. I'll be your host as we talked with people from around the world who have experienced the most difficult moments. I am with origami L jewelry and we personalized luck. It's it has helped me heal so much by having that locket. I've had other friends and customers who have created lockets. They'd love their lockets, and they gift lockets to people who are be relieved or they're celebrating somebody to get your own origami. Our luck it contact Mrs Jensen on Facebook for her website. Dancey Dancey me dot origami owl dot com.

spk_1:   6:30
You are listening to heart to heart with Anna. If you have a question or comment that you would like to dress down, show police in an email to Anna Dworsky 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 Emma

spk_3:   6:48
Welcome back to our show, Heart to Heart within a a show for the congenital heart defect community. Today's show is Heart Sister Now and forever, and our guest is airtime beauty. We

spk_2:   6:57
just finished talking with

spk_3:   6:58
Martin about her experiences growing up with her brother Edward and how she ended up besting him on the soccer field. Or, as you would say in Scotland on the football field, and

spk_2:   7:09
now we're going to

spk_3:   7:10
turn our attention to what happened as they became adults. So let's talk about you said that Edward became a deejay and like to play

spk_2:   7:22
music. Tell me more about

spk_3:   7:25
Edward as an adult.

spk_0:   7:29
When he turned 18 he got a job working at a holiday camp in Scott Mess, which is on the coast in England. When he came back, he was looking at going into bar management. So while he was talking about doing the courses, he came a deejay.

spk_3:   7:46
Wow. So he's kind of a Renaissance man. A little bit of this and a little bit of that, but it looks like he was interested in the entertainment industry

spk_0:   7:54
very much. You've traveled to the big cities for nights up,

spk_3:   8:00
and it sounds at this point, like he was a very healthy young man.

spk_0:   8:06
It wasit. We like to smoke. Andi, obviously that have a few drinks as well with my dad. How, But? But yeah, he was sitting healthy.

spk_3:   8:17
Did he continue to stay fit by playing soccer? Yes, he did. And so something surprising happened to him one day. When did you tell us about that day.

spk_0:   8:28
It was September, the furtive 1999. I was 15. I got up that morning. Going to school is normal. But lunch time, remember? I started feeling really sick, so I came home. I've forgotten my key. So I went to my neighbor's house to get the spare key on DCI phoned for someone to come and get me. I was taken to my uncle's house. Woman Edward was living at the time, and I got told you passed away that night in asleep.

spk_3:   9:00
Oh, my goodness. Your brother passed away in his sleep. Yeah. Wow. And he was only 18 years old.

spk_0:   9:09
19.

spk_3:   9:10
He was 19. So what do they believe happened

spk_0:   9:15
there? We have to wait for city for the autopsy on Dhe. Even then, it was still a few months before the inquest was said. While they could find up study nothing majorly physically wrong with him. They did discover that he did have cardiomyopathy.

spk_3:   9:32
Okay? And so are they. Thinking that the cardio myopathy is what actually caused him to pass away in his sleep.

spk_0:   9:39
They couldn't say 100% for certain, but it was definitely something to do with his heart.

spk_4:   9:44
Wow.

spk_3:   9:45
That must have been devastating for your family.

spk_0:   9:49
It was that she came. But two weeks after I'll dispose, We got married. Wow. So he came back from 20 members to find out that the young that I did have passed away.

spk_3:   10:02
I'm so, so sorry. That must have been so devastating for you.

spk_0:   10:08
It was.

spk_3:   10:10
I remember when you were talking to me before, when we were talking on face, but that you said you remember that day as if it were yesterday?

spk_0:   10:19
Yeah, the story, Mom. But we had no relative passed away the day before. So when I was told what When I was sent to go to my uncle's house, I thought, It's time to do with relative that passed away. But then I feel I don't know. Hey, there's an island. Probably the Uncle Edward lives with, because he does have a drinking problem and he does have heart issues as well.

spk_3:   10:43
Wow. So hard issues run in your family, then

spk_0:   10:49
We don't know because all the kids are adopted.

spk_3:   10:52
Oh, I didn't realize that. So you and Edward are not biological brother and sister? No. Wow. And you have an older brother as well, and he is also not a biological brother.

spk_0:   11:06
Norman couldn't have kids.

spk_3:   11:09
Hey. Well, that makes it really hard to be able to predict what might happen.

spk_0:   11:15
Yes. For a long time, I was scared to fall asleep in case I didn't wake up again.

spk_3:   11:19
Oh, my goodness. Atherton, I can just imagine. So have you been checked? Has your heart been checked to see if you might have a heart problem

spk_0:   11:28
now? I would be good told by the doctor there's no point because we aren't biologically related.

spk_3:   11:34
I know, But if you're losing sleep over it, then it seems like a quick test might be helpful to just give you peace of mind, if nothing else.

spk_0:   11:45
Of what different tests done over the years. But at the time, we got told there was no point. But I have had it test it in the essence.

spk_3:   11:54
Okay, well, let's talk about the fact that Edward passed away without even knowing he had a heart defect.

spk_2:   12:02
How has that

spk_3:   12:02
affected you a return?

spk_0:   12:06
While I still have times where I'm scared to go to sleep on dislike, especially on his birthday and anniversary, those days is still really hot

spk_3:   12:18
sure they are. I'm sure they are. So I found you on the heart world in the heart world. Online. So it sounds to me like you've reached out to the congenital heart defect community. Am I right?

spk_0:   12:33
Yes. After he died, my parents joined some heart. Charity's having you behave in UK, Andi, I help with fund raising with some of the things that mom did.

spk_3:   12:47
So it sounds like you have a new passion since your brother passed away. Yes. I was really surprised when I first met you and you told me a little bit about your story. I'm obviously learning a lot more today than what I knew before, but I was so touched that a sister would want to reach out to this community and want to be part of the community and spread awareness like you have given that you didn't know anything about this before your brother died.

spk_0:   13:19
It's actually quite a common thing. We found out doing research afterwards. This happens Martin. And then you think people do have heart defects that aren't picked up on it after they die?

spk_3:   13:29
Yes. Yes, it does happen more often than you would think and That's one of the reasons I do this podcast, Airton is I'm trying to spread awareness, and I think if more people knew how common heart defects are that they're the number one birth defect, I think more people need to be tested, especially athletes, because you hear about athletes who fall down on the playing field and suffer, ah, heart attack or suffer some kind of heart issue. And that's when they discover they had a congenital heart defect. Because the screenings that they do with our athletes are often not in depth enough to let us know that there is a condition

spk_0:   14:13
in some countries in Europe, it's actually compulsory that athletes have the heart screen.

spk_2:   14:18
Oh, no,

spk_0:   14:18
no, it's, I know in Italy it's compulsory. But in UK isn't

spk_3:   14:24
so. Are you working to try and make it compulsory? Have you been lobbying or doing anything to try and bring awareness to legislators?

spk_0:   14:34
We've sent letters and e mails off two members of Parliament both in England and Scotland, Huh, because it's also a postcode lottery. Whether or not, of course, of Edward stuff is recognized. But he died isn't so. There's not actually official cause of death on the stuff certificate.

spk_3:   14:53
But he's not the only one. Like you said, there are other people. Is there any organization that's near you where you can join up with those people to try and make your countrymen more aware of? This

spk_0:   15:07
worked closely with Cry, which is cardiac risk in young Andi sods, which is sudden adult death singer.

spk_3:   15:16
Very good, very good. Have they been able to make any headway?

spk_0:   15:22
No, it's the same working of any politicians. I think. Don't be interested in what, what's best for them.

spk_3:   15:29
That's a pity. That's a pity. Sometimes it does take something like this happening to one of them for them to wake up and realize how important it ISS. And then something happens. Well, let's help that maybe your groups that you belong Thio, can start to make a difference. And I think there's their strength and unity and your strength in numbers. So by having more and more people join together, we really can make a difference. Everton.

spk_0:   16:00
My stuff nothing. Well,

spk_2:   16:02
thanks for sharing

spk_3:   16:03
this information with us. We're gonna take a quick break, but don't

spk_2:   16:05
leave you out, listeners, because when we come back, we're going to

spk_3:   16:08
ask a returns advice on how she can move forward and how others can move forward

spk_5:   16:14
after losing a sibling. Be right Back after This Forever by the Baby Blue Sound Collective. I think what I love so much about this CD is that some of the songs were inspired by the patient's many listeners will understand many of the different songs and what they've been inspired. Our new album will be available on iTunes. Amazon dot com. Spotify. I love the fact that the proceeds from this CD are actually going to help those with heart defects join Music Home Tonight Forever. Heart to Heart With Emma is a presentation of hearts, Unite the Globe and is part of the Hug Podcast Network Hearts Unite The Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community to uplift and power and enrich the lives of our community members. If you would like access to free resource, is pretending to the C H T community. Please visit our website at www congenital heart defects dot com for information about CHD, the hospitals that treat Children with CHD summer camps for CHD survivors and much, much more.

spk_1:   17:47
You are listening to heart to heart with Anna. If you have a question or comment that you would like to dress down, show police in an email to Anna Dworsky 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 them,

spk_2:   18:06
back to

spk_5:   18:07
heart, to heart With

spk_3:   18:08
love. Today show is Heart, Sister now and forever, and our guest is airtight beauty. We

spk_2:   18:13
just been a

spk_3:   18:14
shock with entertaining about what it was like to lose her brother and then discover he had an undiagnosed congenital heart defect and how that has affected her.

spk_2:   18:24
So in this

spk_3:   18:24
segment, we're going to talk to a return in about Has she's moving forward after having such a devastating loss, So air it in. The first thing is, I'm wondering how you have been able to move forward after losing Edward, and it sounds like you had also lost another relative right before him.

spk_2:   18:42
That's a lot of

spk_3:   18:43
loss toe have to endure.

spk_0:   18:46
I didn't know the relative to well had died the day before. He was a relative here. They've denied into, Don't you see? In a couple of times, So it wasn't a close relative,

spk_3:   18:59
so that one didn't affect you anywhere. Close to what? Losing Edward affected you?

spk_0:   19:04
No money is close.

spk_3:   19:07
So I am also producing a podcast right now called Heart to Heart with Michael. And that is a podcast for the bereaved community.

spk_2:   19:18
One of the

spk_3:   19:18
things that I've been learning working with him and his guests is that moving forward is different for every person and that there are different ways that we can move forward. I hate to say move on because I don't think we ever move on. But we have to keep moving forward. And I've learned that from some of the guests.

spk_2:   19:38
One of the things that

spk_3:   19:39
I learned from C. J was that you honor your loved ones by moving forward and by continuing to remember them. And it seems to me that you have done just that by working with these two non profits by sending letters to your congressman.

spk_2:   19:58
How do you

spk_3:   19:59
feel that you've moved forward a return? It's

spk_0:   20:04
not being easy at the beginning, and I felt like I had to be strong for my parents this. I even like times now. Even especially around his left an anniversary. I still struggle, but I was having always have a drink in his memory. Go to know he'd been for that sitting around, crying my eyes up.

spk_3:   20:25
I think that's neat how you have a drink in his memory, Because it sounds like he would He enjoyed a good drink himself And being studying to be a bartender or being a bartender, I'm sure he enjoyed putting different kinds of drinks together.

spk_0:   20:41
It was a big fun of his beer.

spk_2:   20:43
Uh, okay,

spk_0:   20:46
I'll try to remember the happy times.

spk_2:   20:50
And it sounds like you had

spk_3:   20:51
a lot of happy times.

spk_0:   20:54
Yeah, we did. Like when you drove to my brother's wedding. We both like the boy band Boyzone. So we made repentance, put a tape of their lives on in the car. I'm You just sang the album all the way to the wedding.

spk_2:   21:09
If your parents didn't know that music

spk_3:   21:11
before, they certainly knew it. By the time they got to the wedding. Right?

spk_0:   21:16
Be out to chose one of the songs from the album to play at his funeral.

spk_2:   21:19
Oh, my goodness.

spk_3:   21:20
Wow. So that album really has deep meaning for you, doesn't it?

spk_0:   21:26
Yes, it does.

spk_3:   21:29
I think that's really special. Well, we know that music was important to him. With him being a deejay too, right?

spk_0:   21:36
Yeah. I got a lot of his CDs and stuff after he died. Did

spk_2:   21:40
you? So what do you do

spk_3:   21:42
to keep Edward's legacy alive? Martin?

spk_0:   21:47
I talked to people about him. Let them let them know that even though he's not around anymore, he's still very much fought off. Last year, I completed the marathon in the month for him.

spk_2:   21:59
Did you? Oh, that's wonderful. That's wonderful. Yeah. I

spk_3:   22:05
mean, that's how I met you. One of the first things that you said to me. Waas. I had a brother with a congenital heart defect, and my brother died from his heart to fit. And I remember feeling so touched that that's why you were out there in the community. That's why you were reaching out and touching people. So I do. I do You believe that is how you are keeping his legacy alive? So what advice do you have for other siblings who may experience a traumatic loss like yours?

spk_0:   22:37
Just take each day as it comes you. Some days it's going to be hard some days, not so hard for me. It's Bean over 18 years now since lost Edward. But he does get easy. You never forget them. He always carried you. Always carried on with you and your heart.

spk_2:   22:56
Absolutely. Do you think having

spk_3:   22:59
your tradition, where you have a beer for him and you have his music? I imagine you listen to some of his CDs Sometimes. Do

spk_2:   23:07
you think that helps you to

spk_3:   23:08
get through it a little bit easier?

spk_0:   23:12
It's got Annie's distance of actually got in touch with some of his old school friends. Free Facebook.

spk_2:   23:16
Really? Okay.

spk_0:   23:19
I can't repeat some of the stories they've told me about him,

spk_2:   23:25
but it's nice to be able to

spk_3:   23:26
talk to somebody else who knew him and to be able to share memories with each other. Do

spk_2:   23:31
you think that's been therapeutic for you?

spk_3:   23:34
Definitely. OK, so that might be a piece of advice that you would give to another sibling is Don't be afraid to reach out to the to your siblings friends.

spk_0:   23:44
They'll be hurting, too. If we cannot talk. Remember the good times. This it is good Think.

spk_3:   23:50
Oh, I love that you're so right. The friends will be hurting us Well, and so grief shared is divided. So by sharing with each other, you can each carry a little bit less burden. Yep, I love that. Is there anything else that you would like people to know about? Edward.

spk_0:   24:13
He was just this amazing, fun loving character who was constantly causing trouble. Everyone who knew him

spk_2:   24:26
mischievous trouble, right?

spk_0:   24:28
Oh, yeah, No, nothing too bad.

spk_3:   24:31
He sounds like an awesome person.

spk_0:   24:34
He was. That's how I remember him.

spk_3:   24:36
It's a wonderful way to remember him. Do you have any last words of advice for our listeners?

spk_0:   24:43
Just take comfort in knowing that in this community or not, although there's plenty of others, that's plenty of others who have been through ive exactly the same with something similar. Don't be afraid to reach up.

spk_4:   24:56
Yeah. Oh, I love

spk_3:   24:58
that. And that's why we have hard to hurt with Michael, because I agree with you. It helps knowing that you're not alone, and it helps to know that there's a whole community out there who really gets it. You know, they understand that sometimes you may have tears come to your eyes for no apparent reason. But you just saw something or you just heard something that reminded you of your loved one.

spk_0:   25:22
Exactly. In the times about to the safe markets because the sun those paid all his funeral came on.

spk_3:   25:31
Yeah. It's amazing how different places, like supermarkets or restaurants, well evoke very strong emotions. And you, isn't it?

spk_4:   25:45
Yes. Yeah. Well,

spk_2:   25:47
thank you so much

spk_3:   25:48
for coming on the program today and sharing Edward with us. Air iton. You're welcome. I really enjoyed getting to know you better. We've been waiting for this for three years,

spk_2:   25:59
so it's about time it on the no. I love you

spk_3:   26:05
for being so brave to share your brother in a public forum like this. I know this was probably really challenging for you. It

spk_0:   26:13
was. But knowing I can share his story keeps helps me keep his memory life.

spk_3:   26:18
Exactly. Exactly. Well, friends, that does conclude this episode of heart to heart with Anna. Thanks for listening today. Come back next Tuesday at noon Eastern time.

spk_2:   26:29
Until then, please

spk_3:   26:30
follow our show Heart to heart. With Anna on iTunes, you could find us by looking up my name and a job or ski. And remember, my friends, you are not alone.

spk_1:   26:41
Thank you again for joining us this week Way Hope you have been inspired on Empowered to become an advocate for the congenital heart defect community part to heart With Anna With your hose down, Dworsky can be heard every Tuesday at 12. Noon eastern time.