November 1, 2024 • 40 mins
Do Halloween festivities bring more joy or concern when you’re living with a congenital heart defect? Ashley DeMarco shares her journey growing up with complex heart conditions, turning personal challenges into stories of resilience. Alongside her, we hear from Michael Liben, who navigates grief with humor on his podcast "Bereaved but Still Me," and Rita, who provides a multi-generational perspective on congenital heart disease (CHD) with her family's experiences. Together, we unravel the nuances of navigating health and community as young adults and parents in the CHD world, painting a picture of hope and solidarity.
As we transition into the spirit of Halloween, nostalgia and safety tips blend together in our lively discussions. We reminisce about trick-or-treating in tight-knit communities, while also highlighting the essential precautions for children with heart conditions during these festivities. The contrast between past and present perceptions of safety reveals a world that’s both cautious and filled with connection through shared medical experiences. Our conversation is a heartwarming reminder of the bonds formed between parents and children, especially when magic and medicine intersect.
Finally, we address the often-overlooked emotional toll of compassion fatigue. With stories from heart camps and non-CHD friendships, we explore the challenges of maintaining relationships while living with ongoing health issues. Rita reflects on a memorable live show, demonstrating how our means of connecting have evolved. The conversation serves as a beacon for understanding and connection, underscoring the profound need for community support. We invite listeners to contribute their insights and stories, enriching the dialogue and reinforcing the shared journey of the CHD community.
Helpful Links:
The Rita, Victoria, and Heidi Scoggins' episode: https://tinyurl.com/3Scoggins
Amy Erhart's first Heart to Heart with Anna episode: https://www.buzzsprout.com/62761/episodes/15810923
One of Michael Liben's Heart to Heart with Anna episodes: https://www.buzzsprout.com/62761/episodes/736588
Compassion Fatigue Episode: https://www.buzzsprout.com/62761/episodes/736588
Become a subscriber: https://www.spreaker.com/podcast/heart-to-heart-with-anna--1256958/support
As we transition into the spirit of Halloween, nostalgia and safety tips blend together in our lively discussions. We reminisce about trick-or-treating in tight-knit communities, while also highlighting the essential precautions for children with heart conditions during these festivities. The contrast between past and present perceptions of safety reveals a world that’s both cautious and filled with connection through shared medical experiences. Our conversation is a heartwarming reminder of the bonds formed between parents and children, especially when magic and medicine intersect.
Finally, we address the often-overlooked emotional toll of compassion fatigue. With stories from heart camps and non-CHD friendships, we explore the challenges of maintaining relationships while living with ongoing health issues. Rita reflects on a memorable live show, demonstrating how our means of connecting have evolved. The conversation serves as a beacon for understanding and connection, underscoring the profound need for community support. We invite listeners to contribute their insights and stories, enriching the dialogue and reinforcing the shared journey of the CHD community.
Helpful Links:
The Rita, Victoria, and Heidi Scoggins' episode: https://tinyurl.com/3Scoggins
Amy Erhart's first Heart to Heart with Anna episode: https://www.buzzsprout.com/62761/episodes/15810923
One of Michael Liben's Heart to Heart with Anna episodes: https://www.buzzsprout.com/62761/episodes/736588
Compassion Fatigue Episode: https://www.buzzsprout.com/62761/episodes/736588
Become a subscriber: https://www.spreaker.com/podcast/heart-to-heart-with-anna--1256958/support
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:05):
Welcome to Heart to Heart with Anna. I am Anna
Juwarski and the mother of an adult with a single
ventricral heart. That's the reason I'm the host of your program.
Today's show is a huge departure from the kind of
Heart to Heart with Anna show we normally do. This
is the second live show I'm doing since attending Podcast
Movement twenty twenty four. This is a chance for us.
Speaker 2 (00:26):
To do a live episode with a studio.
Speaker 1 (00:28):
Audience that allows for more questions and answers and honest conversation.
Part to Heart with Anna usually only features one or
two guests, so to have a studio full of guests
is always exciting for me. Just like last month, this
show is unscripted, so we're going rogue that puts all
my Toastmastering skills to the test. And for those of
(00:51):
you who don't know what Toastmasters is, it's an international
organization designed to help people become better communicators. This episode
well basically be one table topic question after another, and
it will also be mixed in with some great conversations,
so I'm really looking forward to that. I am blessed
(01:11):
to have an awesome producer here today. Thank you Rachel
Gott for stepping up and accepting this challenge.
Speaker 3 (01:20):
Viewers, so welcome, and I'm happy to be here and
I'm excited to chat with everyone.
Speaker 1 (01:26):
I know me too. We have a great studio audience today,
and just like Fast Time, I'd like to start with
REEF introductions from our attendees, and then we'll start the
Q and A session. I'm going to start with Ashley.
Ashley DeMarco, can you please tell us a little bit
about yourself, your relationship to THHD, whether you're a heart
(01:48):
mom or an adult with a CHD. I have a
feeling I already know the answer since I found Sweet Shirts. Yes, yes,
we already saw my shirt in the beginning.
Speaker 4 (01:57):
I'm Ashley. Was born with my heart patient. I was
born with homeryatrijia intact particular septum with right flow angioplasty
with right heart plant operation like the short is pa IBS.
In twenty eighteen, I had a pacemaker place for six
and I syndrome, and then over the years I developed
other things like right ventric hypertrophy, arrhythmias and my new
(02:21):
thing is cardiac autonomic neuropathy.
Speaker 1 (02:25):
Oh well, yeah, it's a lot of new lot.
Speaker 4 (02:29):
Yeah, so a lot of new things as a young
adult trying to navigate the world.
Speaker 1 (02:35):
Yeah, that is that's a lot to navigate, Yes, as
an adult. Were your parents there by your side anyway?
They're always there. My parents are alwaysool. Yeah. I love
hearing that. Yeah, welcome to the episode today. I'm excited
to get to know you. Yeah. YouTube. The second person.
Speaker 2 (02:56):
Who came in the room was Michael Leban.
Speaker 1 (02:58):
He's no stranger, hard to heart with Anna, but maybe
not everybody there's him.
Speaker 2 (03:03):
Michael.
Speaker 1 (03:04):
Let's go ahead and let you unmute and tell us
a little bit about your relationship to PhD.
Speaker 5 (03:10):
My daughter was born with double outlet right ventricle and
she was also autistic, and at age fifteen, she succumbed
to epilepsy. And then after that, I was on your
program and you asked me if I would do a
short series on grief, and I said, okay, a short series.
(03:31):
How many is that? And you said twelve. I want
to do it over the course of a year on
my show. And I said, well, okay, that sounds like fun.
I'll give you three, and if I'm still alive after three,
we'll do twelve. Then that was almost eight years ago
and we're still doing it, and we're.
Speaker 1 (03:47):
Still I don't know, episodes later.
Speaker 5 (03:49):
I don't know how it's going to end, truly show,
how will it end? I don't know.
Speaker 1 (03:56):
It's well, a lot of fun. We've had a lot
of laughter, which seems bizarre for a podcast from grief.
Speaker 5 (04:03):
That's something that needs to be said. A lot of
people I know won't listen to my program because they're
not currently grieving, or grief sounds like a downer. It is.
I don't want to take that away. But what we
try to do is to celebrate lives of those who
are not with us. Often we share memories that make
us laugh and giggle and shortal, and generally we have
(04:24):
a good time, which is, like you said in Congress,
for a show about grief, but there it is.
Speaker 1 (04:31):
What I love about our program, which is called Berief
but still me Friends, is that we have learned that
grief shared is divided and joy shared is multiplied. So
we don't mind sharing tears because we know that we're
in a safe spot with friends, and we know that
(04:51):
sharing that grief makes us feel better, and it Michael
always makes us laugh, so that always makes us feel
good too.
Speaker 2 (04:59):
Man.
Speaker 5 (05:00):
Part of my job description.
Speaker 2 (05:01):
It is definitely part of your job description. Thanks for
being here today, Michael.
Speaker 5 (05:05):
I appreciate your pleasure, my pleasure.
Speaker 1 (05:08):
Next, we have a dear friend of mine who was
in Season Wine and multiple times since Season Wine. That
is Rita. Rita, would you unmute your mic and talk
to us about who you are and what your relationship
is to THHD.
Speaker 2 (05:25):
Hello, Lena, I've been involved with your show for a
very long time. How many years is it now?
Speaker 1 (05:35):
Eleven years? Can you believe it? Rita?
Speaker 2 (05:40):
And of course I knew you long before that through
the list service we used to have to use to communicate,
which is also where we met Michael. Yes, definitely. I
am the mother and grandmother of HD or. My daughter
was born with Pracaspeditrijia, and my granddaughter was born with PAPVR. However,
(06:05):
we didn't know about her part in effect until she
was eighteen years old, seventeen eighteen, and she had to
have open heart surgery for that, so that was quite
a shock course, it.
Speaker 1 (06:17):
Was, and I was fortunate enough to have all three
of those lovely ladies on Hard to Heart with Dianna,
and we actually talked about that though. I can put
that link to that show in the show notes because
it was a really good episode.
Speaker 2 (06:31):
Yeah, it was if it on a lot.
Speaker 1 (06:34):
We've talked about a lot more than that on the
show Guilty.
Speaker 2 (06:39):
I've been involved in the heart world for quite a
long time.
Speaker 1 (06:42):
How old is she forty one? That just doesn't seem possible.
Speaker 5 (06:47):
Yeah. Can I just say we're out of that because
when we met on the list, sir, I think she
was a teenager. Yeah, sent me a photograph of the
family in snow in front of your house. Yeah, and
she was this thin, little teenage kid having fun. And
I can't believe that's forty one years old now, because
it just gosh.
Speaker 1 (07:07):
I first got online twenty eight years ago, and you
were one of the first people I met, Rita, and
you gave me so much hope because at that time
I didn't know any other single Venturaco kids that old.
Most of the people I knew they were still like
my child of toddler or babies. Most of the people
(07:30):
I knew actually had children younger than mine. Wow, what
do you want? I'm happy to have you here. And
I was sad to learn that your granddaughter also had
a heart condition, but I was so proud of the
way she handled it.
Speaker 2 (07:45):
What a pro y hadn't she quite involved? She's in
nursing school, she'll graduate in May, and yeah, she's been
very good about explaining everything, going to different lessons that
her professors have invited her to inform the students about
(08:06):
HD and her experience. So I think that's good. She's
spreading awareness absolutely.
Speaker 1 (08:14):
And then we had Amy Earhart, who was also here
for the episode in September, So welcome Amy. Can you
tell us about your relationship to HD? Hi, thank you
for having me. Yes, I was born with hypoplastic lock
chart syndrome and actually on Saturday the nineteenth, I.
Speaker 2 (08:33):
Will be trying forty two. So super excited to celebrate my.
Speaker 1 (08:37):
Birthday every year. I just feel keep getting better and better.
I had a very wonderful childhood growing up with fantastic
My parents were great. To meet my family friends, I
would say, like skipping to adulthood. I am an extremely
healthy HLHS patient. I work out pretty much five days
(09:02):
a week.
Speaker 5 (09:03):
Wow.
Speaker 1 (09:04):
Yeah, going to office visits is fantastic. The motto is
if it's not broken, don't fix it. So things have
been status quotal for a really long time raising awareness
through a fundraisers back in my hometown. We just raised
eighteen thousand dollars through a fundraiser called put Around Koalita. Basically,
it's where small businesses come together and they each filled
(09:27):
their own cutting green, we get donations. We had so
many different things for the kids to do. It was
really just a family fun day and we raised a
ton of awareness and funds and then we were able
to donate those. So things have been fantastic. Recently started
a podcast on my own for seveste awareness. It's just
amazing and I got to meet you along the way,
(09:48):
so that's also been very fantastic.
Speaker 2 (09:51):
It has been fantastic. And Amy's been on my show,
so I'll have to put a link to that episode
as well. In this show notes, all of you can
learn a little bit more about her. But for those
who haven't heard the show before, can you tell them
how your HHS has been handled?
Speaker 1 (10:06):
Yeah? So three are transplant. Yeah. I was very lucky.
I'm born in eighty three. The only surgery that I've
had to have thus far was in eighty seven, and
that was the Fontam procedure. And in two thousand and
nine they thought I was going to have to have
a revision. Thank goodness, it did not happen, and since
then I've been very healthy. I had my first pacemaker
(10:29):
at the age of eight, and then in twenty seventeen
I had a pacemaker place for agro leads and with medication,
everything has just been fantastic. I have been so lucky
and blessed that I have not had to go through
a lot. It's so wonderful to care and as a
heart mom, and I'm sure Rita can attest to this,
and Michael as a heart dad. This is what we
(10:51):
wanted to hear, that our kids who were born with
funky hearts could live a happy life and wouldn't constantly
be in a hospital. I wouldn't that we be faced
with difficult decisions to make regarding their care. So you're
the poster CHOBD for what we wanted people, Well, thank
you a big deal. It feels so good to be
(11:13):
that and see that. I don't think when you're younger
you understand the gravity of what it means to get older,
and as you get older, it's just every day. Granted
you have your ups and downs, right, but every day
it's nothing to be thankful for Yeah, I agree one
hundred percent. I'd like to take a brief moment to
(11:33):
thank our newest our Tart with Anna sponsor Make You Heartworks.
And for those of you who don't know about Heartworks,
it's a nonprofit organization whose mission is to find a
cure for kanjaba heart defects. Stay tuned because later this
year we'll be doing a future episode with them where
we can learn more about them and especially about a
(11:54):
new project they have that's going on. Because most of
you know, Heart to Heart with Anna is not intended
to be substitute for professional medical ad vice, diagnosis, or treatment.
This is just a live discussion by members of the
COHD community. Any opinions expressed in this episode are not
those of Hearts Unite to Globe, but of the host,
who is me and my guests. Our discussion today is
(12:17):
to help us learn a little bit more about safety
issues during the holidays, especially when you have a congenital
heart defect. We are recording this episode in October, and
in the month of October in the United States, Halloween
is a big deal. Children in our country often dress
up in costumes, they go trick or treating, from house
(12:38):
to house or attend Halloween parties. Never Since my kids
were little, it was common for churches to have special
events for children.
Speaker 2 (12:47):
Sometimes instead of Halloween.
Speaker 1 (12:49):
They would call them harvest festivals or something else if
they didn't like Halloween. And there are a number of
religions that don't practice Halloween, so it makes sense that
they would have a hardest festival instead. A lot of
people when my kids were little, which was over twenty
years ago, were not as keen on going trick or
(13:12):
treating because there were stories for decades about people putting
raizor blades and apples or tainting the goodies somehow, and
so going door to door was not as popular when
my kids were little as it was when I was little.
And Michael, I would love to know about when you
were little in New York if he went trick or
(13:33):
treating as well, and you too, Rita, because we're the
parents here in today's session fifty, we're the older ones.
So let's start by talking about safety issues, especially regarding Halloween.
What do you do to stay safe during Halloween and
do you have any tips or tricks that you can
share with my listeners. I want to start with you Michael,
(13:55):
because I know you have a story here. I remember
growing up in New Jersey and going old. I remember
having to wear a sat over my Halloween costume and
being so mad because nobody could see more Halloween costume
because I had my coat over it. Did you experience
that too?
Speaker 5 (14:15):
It was fun, It was great. It was chili. We
had a couple of things. My neighbor around the corner,
his parents every year would set up this huge vat
and boil hot dogs, and they were unlimited, and so
we all went over there and paid that on the
haunt dogs. We went from place to place with relative safety.
(14:37):
I had one nasty neighbor who would not donate to
the UNSEF because he was convinced we were all stealing it.
If you remember, UNICEF had those orange boxes and were
asking them too to put in a penny. The school
gave out this box that you had to put together
and it was for UNICEF, and we were asking people
for a penny and the boxes becoming pretty heavy. We tricked,
(15:00):
we're treated, We got candy. There was always some story
about the weird neighbor on whatever street, but nothing ever
panned out. We heard all the rumors about equal things
like the razor blade scam and all the other stuff.
But most of the time we just said, that's not here,
that's somewhere else. We don't do that. And it was
great until it just got too old to do it. It
was a lot of fun. Yeah, it's not a holiday
(15:22):
I would celebrate now.
Speaker 1 (15:23):
Would you not celebrate it because you're in Israel now
instead of in New York.
Speaker 5 (15:27):
It's not a Jewish holiday. All Saints Eve has nothing
to do with us. We loved it as kids because
we loved the candy and we didn't pay much attention
to anything else. But here in Israel, American immigrants with
small children might have a party. Okay, yeah, and they
might have a party. They might set up some trick
or treating in their building just to give the kids
the experience of doing that. But it's not really a
(15:49):
big thing here. We don't really have it.
Speaker 1 (15:52):
For those of you who don't know, Michael was raised
in New York, but he did ali Ya to Israel. Gosh,
you were in college, right.
Speaker 5 (16:02):
No, Actually, my junior year in college, I spent a
year here studying, and then I went home to finish,
and then in nineteen eighty one, I came back and
I've been here pretty much since. It's been a long time.
Speaker 1 (16:13):
Yeah, to tell me what the Halloween was like for you,
Rita that committing dark ages.
Speaker 2 (16:22):
My first memories of Halloween. I lived in Cleveland, Ohio.
Speaker 1 (16:25):
And I was poor.
Speaker 5 (16:27):
So did they have candy?
Speaker 1 (16:29):
Then?
Speaker 2 (16:30):
Yes? They did? Okay, so we dressed up and we
went tricker treating and I imagine it was cold, but
I don't really remember. I remembered the plastic mask we
would wear. My gosh, what does all aful my dear.
Speaker 1 (16:44):
Sounds so rridful.
Speaker 2 (16:46):
They were so horrible.
Speaker 1 (16:48):
Yes, I remember that I had the.
Speaker 5 (16:50):
One with the moving jaw, so we would like the talking,
moving me off mask.
Speaker 2 (16:58):
And then the costumes they were all plats. Again, yeah,
I don't know, it's the other material. I never had
it closer to my skin because it was always cold,
so I always had a T shirt and a shirt
and then the little plastic costume and in my coat over.
Speaker 1 (17:15):
It's good to see the plastic dome anyway, were very flammable.
Speaker 2 (17:20):
Yes, it were, and that's they don't make them anymore.
Speaker 1 (17:25):
We moved Toston and then it was fat.
Speaker 2 (17:28):
That's probably why I don't remember being cold.
Speaker 1 (17:32):
I want to ask the parents, since all three of
us had children with HD, after you had a kid
with the THHD, did you treat Halloween differently or did
you do the same thing with your HD or that
you did with your other kids, same thing.
Speaker 2 (17:49):
We were told to treat Victoria normally, naturally, the way
we treated our other kids, and that's the way to do.
Speaker 1 (17:56):
Yeah, as too, what about you, Michael.
Speaker 5 (17:59):
My kids never experienced Halloween the overall born in Israel. However,
had we done that before Leola was born, we would
have done it with her because we did everything the
same as much as we could. We had similar advice
from the physicians. I remember just after she was born,
and just after she was diagnosed, she had a cold
(18:20):
and I called her carreologist. He said, what are you
calling me for? She has a cold. Call a regular doctor.
Treat like a regular kid. It hadn't occurred to me
that she could be a regular kid. So yeah, we
would have probably done it the same.
Speaker 1 (18:31):
Yeah, we did too.
Speaker 2 (18:33):
The difference was by that time in history, we would
always chuck the candy when it means because things that
happened by then made you and that's fair we made
changes too.
Speaker 1 (18:50):
Compared to when I was a kid. Growing up, I
only took my kids trig or treating to neighbors that
I knew. We didn't go to complete strangers. When I
was a kid, you just walked along the street. You
may not have known all of the people that you
went to. But by the time I had.
Speaker 2 (19:07):
Children, we only went to people we knew, and the.
Speaker 1 (19:12):
Churches had started to do those festivals, and we always
ended up going to those because they were so much fun.
Now I want to talk to the hdars and I
want to know how they treat Halloween and if they
have any special tips or tricks for staying safe during Halloween. Amy,
I'm going to start with you because you're the oldest
(19:33):
shown person here. Okay, yeah, So honestly, growing up my
parents for the same way, I appreciate parents who saiday,
they treated their PhD KULD like their normal children. Urst
my heart to hear that so many are restricted so often.
I grew up very normal, So I had no restrictions
(19:56):
growing up. I would say, because the season right to
get your flu shot. But beyond that, life was fairly easy.
When it comes to germs and things like that. I
feel my parents would have done the same thing all around.
There was nothing odd or fantastic or anything. I grew
up in a very small town, so trick or treating
(20:17):
we went to every single house, and a lot of
times we trick or treated by ourselves as well, so
that was also very fun and different. I think our
community back then was probably a thousand people in our community,
so we were very small. So yeah, it made things easy.
I think. I so appreciate that. And your parents let
(20:39):
you go alone.
Speaker 2 (20:40):
Yes, there was one age, oh I would saying.
Speaker 1 (20:45):
I think I would say great school.
Speaker 2 (20:46):
We were probably four fifth, sixth grade.
Speaker 1 (20:49):
Everybody in the community was out, though, so people would
come up town and everybody was out. You would be
out with friends. It would be bad age all the
way up until your high schoolers. It's very interesting because
it probably does sound a little oh my goodness, but
the smallness of our community back then to the honest
(21:10):
kids still run around today. So it's just a tight
knit community. And I couldn't have asked for more. I
love that. I absolutely love that. I hated that we
feel like we have to be so overprotective of our kids.
Isn't interesting because I've been watching House on our international
with my husband. That's our guilty pleasure at night. You
(21:34):
see these other communities in these other countries and the
children seem to have a lot more freedom. It feels
like we have become a society that is extremely overprotective
of our children. And it's understandable you don't want anything
bad to happen to your kids, but I think it's
so restrictive. Whish we all lived in the Yeah, what
(21:56):
you're talking about? Yeah, that was truly the beauty for
were Yeah, Okay, Rachel and Ashley, I'd love to hear
from the two of you if either one of you
have something to share about growing up with the CHD
and how you dealt with Halloween.
Speaker 3 (22:12):
For me, like everybody else, my mom treated me normally.
Both my parents did. We didn't know about it when
I was a baby, so you can't really act accordingly.
But I was never singled out or treated differently when
it came to howuring.
Speaker 1 (22:28):
But you also didn't really know about your CHD for
quite a while, right, Rachel Rack And what about you, Ashley?
Speaker 4 (22:39):
I mainly did special events or Halloween parties with preschool kindergarten.
I did go out and did trick or treating normally,
but I.
Speaker 1 (22:48):
Was always getting tired easily.
Speaker 4 (22:50):
My speech was not there because I had a stroke
as well, So parties were my main thing of pumpkin patches,
carving pumpkins, making treats, projects and stuff.
Speaker 1 (23:04):
See that's good to hear, though, because not everybody is
going to have kids out there who have PhDs that
allow them to live a completely normal life, and.
Speaker 2 (23:13):
It's nice to know with a few modifications you can
still have fun.
Speaker 1 (23:18):
Yeah, thank you for sharing that.
Speaker 5 (23:19):
That's it.
Speaker 2 (23:21):
Yeah.
Speaker 4 (23:21):
I wasn't really big on Halloween stuff, more like dressing
up and costumes were bigger to me, meeting having fun with.
Speaker 1 (23:28):
That, not really candy as much. Yeah, I hear you. Yeah,
I hear My mother was very restricted. We could go
out and do the trigger're young, but we were only
allowed a certain amount of candy every day, and my
sister used to take some of the Halloween candy. My
mom's not alive anymore, so I can tell the story.
But yeah, my sister used to take it. She used
(23:50):
to hide it under the bed so my mom would
have so she could work here deeper out the year.
Speaker 5 (23:55):
I'm shogging. Oh no, I'm shocked. And stunned.
Speaker 1 (23:59):
Yeah, though my sister was a little stinker.
Speaker 4 (24:04):
I'm sure like hearing your stories on my stories as
younger trigger triggers.
Speaker 1 (24:10):
It wasn't much of candy being out doing that kind
of stuff. It was more like being with friends and
decorating and doing all that kind of thing instead.
Speaker 2 (24:19):
It's just probably a lot healthier for us, yeah, exactly,
instead of standing how many mountains bars can you eat?
Speaker 5 (24:26):
Yeah, Oh, you'd be surprised. Sometimes you feel liking that,
sometimes you don't.
Speaker 1 (24:35):
Friends. I love it when you all give me feedback
on Hard to Heart with Anna episodes. It helps me
to improve programming for you and to make sure that
I'm doing what you want to hear. Please send me
messages on Facebook or Instagram or LinkedIn. You can also
send me through old fashioned email Anna at Heart to
heartwana dot com, or you can also send one on
(24:58):
the Hearts Night the Glow website. We actually have a
form right there that you can fill out, So visit
Heartshutniteglobe dot com and you can fill out a form
there as well.
Speaker 2 (25:09):
Now we are back for the last segment.
Speaker 1 (25:12):
This has gone way too fast. We've had a lot
of laughter and shared some really fun stories. But now
I would like to invite my audience members to share
a favorite episode or make a comment about an episode
you've heard recently, or to suggest a future topic or
a heart to heart with Anna episode. Last month, when
(25:34):
we did this, we got so many fabulous ideas for episodes.
I am super excited about that. Who would like to
go first and comment on an episode or make a
suggestion for a future episode? Yes, Michael, I.
Speaker 5 (25:51):
Guess it's no secret. About a month and a half ago,
I had heart surgery. I had a valve replacement that
a bypass. I wish Leo over here to see that
I have the scar that she's always had. And I
would wonder what the relationship would be between kids who
went first and parents who went second, and if there's
something there that bonds them because we shared something that
(26:14):
nobody has now. I can't ask her she's been gone
for almost twelve years, but I would love to see
her reaction, because she was autistic and also not I
would just want to know what you would think and
say I got one of those, and we could share
memory stories. I don't know something, and it's possible now
for you to find HD kids who are old enough
to talk about that and maybe find a parent who's
(26:36):
had surgery and can see how that works out between them.
Speaker 1 (26:40):
I love that suggestion. Oh my gosh, that is such
an awesome suggestion. It's interesting because a couple of years ago,
I did an episode with a father who got a
tattoo that looked exactly like his daughter's scar because he
didn't want her to be the only one who had
(27:01):
a scar on her chest. And I actually interviewed that father.
It was a Bucky family and they're part of the
Heart Community Collection group, and it was a really interesting episode.
But he didn't have a scar like you do. You
have a legitimate scar that is just like what Leelle
would have had. So I love that suggestion.
Speaker 5 (27:23):
And I got a scar, and I got a bunch
of poke holes. We could trade stories. Oh my god,
she I went second, and I wish I could talk
to somebody about that.
Speaker 1 (27:33):
Yeah.
Speaker 2 (27:34):
Yeah. Victoria's godfather had to have heart surgery after they
already had a relationship, but they became members of the
Zipper Club together. For Victoria, it was neat to see
that somebody older had those scar like hers.
Speaker 1 (27:50):
Did the godfather ask her any questions about having had
the surgery, or when he was preparing for the surgery,
or was there even fine for that. There was no
time for that, it was margenty m Yeah, but that
might be interesting to have the two of them. We
should put feelers out though, and see if there's anybody. Oh,
(28:14):
I'm sorry to hear that. Wow, that's an excellent question, Michael.
That would be a fascinating show, especially if the child
is old enough to be able to verbalize how they
feel and what it feels like to them to see
someone else, say lab having the same scar that they do.
(28:35):
I think that's fascinating. Okay, that is a messed do show.
Now we just have to find a guess. It would
be interesting to see who comes forward with that, because
I think that is fascinating. I actually tell us what
you have to say. I was. I grew up going to.
Speaker 4 (28:51):
Heart camp, and I didn't know anybody else until I
went to heart camp and met people.
Speaker 1 (28:55):
With HD, right, and that's a great way to meet
person to not feel alone. You didn't have anyone else
in your family who had a scar? No, Yeah, it
was the same way for my kid. We didn't have
anyone else in the family either. All the grandparents had
not had heart attacks or had any heart issues. Sarah, Rita,
(29:20):
do you have another suggestion, Rita, I was.
Speaker 2 (29:22):
Going to comment on shadow that we did. I can remember.
It was quite a few years ago, and I was
in the car. We were driving in California and we
did the show with me on it from the car
with me. Well, I ever forget that interesting reporter. Yeah,
(29:50):
it was Michael and you do and me.
Speaker 5 (29:53):
I remember that.
Speaker 2 (29:56):
Such advised.
Speaker 1 (29:57):
But there was another live show that we did. Do
you remember, Michael?
Speaker 5 (30:02):
I remember reading from the car. I absolutely remember that.
Speaker 1 (30:05):
Yeah, that was another live show. And if I'm not mistaken,
I was on vacation when we did that as well.
I was in a coffee shop, so nobody was where
they were supposed.
Speaker 5 (30:15):
To be except for Michael, and never where I'm supposed
to be.
Speaker 1 (30:21):
That's stricter. Yeah, but that was back in the day
when doing a live show was terrifying. This isn't quite
as terrifying because even though I'm doing it live, I'm
not broadcasting it right this minute, friends, I will be
out of tea a little bit.
Speaker 2 (30:36):
But it was I think that one wasn't it? It
was really live because when I was using at different studios.
Speaker 1 (30:43):
We didn't have zoom back then. That's how long ago
that was. We did not have zoom. I was using
blog talk radio to create the podcast, and they had
a feature where you could do it live and as
you were recording, it was going out on the airwaves,
which lent itself to many opportunities for problems, many opportunities
(31:07):
for problems, and if there was a problem that could
be had, I had it while doing a live show,
and that's why I stopped doing live show. Spit with
not Oh my gosh, I don't know. We just didn't
even get the kind of interests that I thought we
would get. And we had a couple of people who
called him that were inappropriate. They were talking about acquired
(31:28):
heart disease and trying to promote their products instead of
being focused on Kajo the heart disease. So I stopped it.
But this is really fun to have a studio audience
like this and just get a chance to talk to people.
For me, this has been a lot of fun.
Speaker 2 (31:45):
We're not going to do any episodes in cars there
well that you never know if.
Speaker 1 (31:52):
Somebody comes to one of these live shows, they could
be in your car that would be interesting, Okay, Ashley
a lot of friends that are curious about her stuff.
Speaker 4 (32:02):
If that would be a thing of friends of NONHD
not knowing and explaining and figuring that out. Would I
don't know if that would be a thing.
Speaker 1 (32:14):
I've never done a show like that before.
Speaker 6 (32:16):
That's really fascinating of how their perspective on HD is. Yeah,
and what questions they had but you're afraid to ask.
Speaker 1 (32:27):
Yeah, that would be good. I would No, that would
be great. I would just need help in finding this.
Speaker 4 (32:36):
I really likeli Idea that was friends with people and
they've left because of this and they didn't want to
deal with it.
Speaker 1 (32:43):
Maybe teaching them and learning. So I've been going through
a lot of that. If I've lost friends because I've
gone through so much and it's never consistent and I'm
never there. Yeah. I had a guess toast once who
did a show called Compassion Fatigue. It was a really
(33:07):
good show. It was actually a hard dad that did it.
Chris Perez was my guest host and he did an
excellent job and he talked about what compassion fatigue is,
which I had never heard of before. But it's where
people get worn out being worried about and caring about
somebody else and yeah, they can't handle it, and so
(33:32):
what do you do for that? And in his episode
he actually talked to somebody who discussed what compassion fatigue
is and how to handle that. I think your idea
of having friends who have who are not affected by PhD,
but who knows somebody who has a THHD and questions
(33:52):
that they may have that they're afraid to ask and
maybe even share some experiences that they were confronted with
certain situations didn't know how to react to it. I
think loge times people will avoid experiences where they feel
like they may look stupid or that they just don't understand.
They don't want to say the wrong thing. Michael has
(34:14):
a million stories about this, dealing with grief where you
lose friends when you lose a child because they just
don't know how to handle that. And I imagine sing
you go through meeting of hay Anker peacemaker surgery or
oh my gosh, she's bing you medications.
Speaker 4 (34:31):
Again, I'm always in and out of the hospital and
never there does happened back in October of last year
of how I lost my friends because I was really
sick and I never could recover from that.
Speaker 1 (34:43):
So that's how I lost that group of people a friend.
And it's so hard because it's not bad enough that
you're going through a major medical crisis, but then you
leave your support groups, yes, and how to get that
back from other ways, And that's a different show. That's
a totally difference. That's totally different. But yeah, it'll be something. Yeah,
(35:07):
that would be a really good episode to do. I
know you're not the only one. That happens to people
in a brief community as well. And in a way
it's a form of bereavement because you've lost your health
and then you've lost your friends on top of it.
So it's a lot of loss, Michael.
Speaker 5 (35:26):
If you're a parent of a'sty child, you can lose
your friends if you talk about your kid too much,
you walk in the room, they just owe it's him.
It's a real thing. It's a real thing.
Speaker 1 (35:37):
Bunny here than anyone.
Speaker 5 (35:39):
They get tired of hearing it, you know.
Speaker 2 (35:41):
I think a lot of people don't want to face
that kind of thing, and it makes them uncomfortable that
you have to face it.
Speaker 5 (35:50):
Quite possibly, quite possibly, I also think that I can
overtalk it, but Leelle became my calling card. I walk
into a room and said, Hi, I'm Mike, my daughter
as a PhD. And it was identifying myself through her,
and that is understandably difficult. Un friends and I didn't
lose too many friends, but I could tell that they
(36:12):
were tired. They were tired.
Speaker 1 (36:15):
That's had compassion fatigue again.
Speaker 2 (36:17):
I remember that episode I was still long about.
Speaker 1 (36:20):
Yeah, christ is such a good job, hmes.
Speaker 5 (36:23):
That was the first episode I heard. The guest was
Pastor Dan who later was on our show on bribas
still May and he talked about compassion fatigue and caregiver
burnout and it's real, but it's also vicarious. I may
or may not be burned out, but my friends get
burned out by hearing about it all the time, and
(36:44):
that's something you have to watch out for.
Speaker 2 (36:46):
I don't really share all that much about Victoria with
my friends or with my close friends, probably, but not
with my friends at Aren't Clothes.
Speaker 1 (37:00):
Well. It's interesting because when I created my Facebook page,
I created a Facebook page for family and high school friends,
college friends, and then I created a separate Facebook page
for my part friends because I talk about hope with
them and it's like Michael said, I knew my friends
and family would probably get sick of hearing me talk
(37:21):
about CHD all the time, and they would get compassion fatigue.
So I just had two separate pages, and then something
happened and I can't get into that old page, so
I ended up having to blur it together. I haven't
lost that many people, but I actually have lost a
couple of people who are infriended me, and I wonder
(37:43):
if that's why they unfriended me, because they can't handle
all the PhD stuff that's mostly where I spend my time. Yeah,
because it's not like as coming from a pasion myself
of you can't just walk away from it. It's life exactly, Clay,
and here I have to keep going for it, and
it's appears the same thing exactly. Yeah. Yeah, yeah, I
(38:09):
can't just saying I'm going to break I want to
break from us. No you can't.
Speaker 4 (38:13):
You wish but no, no, And I having mess what's
the artist of other friends of not understanding and just
wanting it to be okay? And I've had friends of
if I would just get better, then I could just
be more happy or be more present.
Speaker 1 (38:28):
But that's not how life goes and this HD. Yeah,
thank you for sharing now with me, because you're the
first person who has suggested that specific type of show,
and I think that would be really good. But that's
something I'm actually going through right now, is why. That's
what's sorry. Yeah, it's not good. Yeah, you know what,
(38:53):
it's not all good. But if we can inform people,
if we can educate people, because I think that's a
big part of the problem.
Speaker 2 (39:00):
Is people don't know what to do and they don't
know how to act.
Speaker 1 (39:05):
And let's face it, it's easy to be selfish, it's
hard to be compassionate. It makes you vulnerable and people
don't like to be vulnerable. My producer has been so
good at letting me know out my time. So that
does conclude this episode of Heart Tart Within. I want
to thank all the people who took the time to
(39:26):
be part of our live studio audience, and special thanks
to my producer, Rachel Gott Please for listening today, my friends,
and thanks again to our newest sponsor, Heart Works. We're
so excited to work alongside you as we all envision
a world without pad to heart defects. But until that time, remember,
my friends, you are not alone.
Speaker 5 (39:49):
Thank you again for joining us this week. We hope
you have become inspired and empowered to become an advocate
for the congenital heart community. Heart to Heart with Anna
with your host Anna Jaworski can be i heard at
any time wherever you get your podcasts. A new episode
is released every Tuesday from noon Eastern time.
Welcome to Heart to Heart with Anna. I am Anna
Juwarski and the mother of an adult with a single
ventricral heart. That's the reason I'm the host of your program.
Today's show is a huge departure from the kind of
Heart to Heart with Anna show we normally do. This
is the second live show I'm doing since attending Podcast
Movement twenty twenty four. This is a chance for us.
Speaker 2 (00:26):
To do a live episode with a studio.
Speaker 1 (00:28):
Audience that allows for more questions and answers and honest conversation.
Part to Heart with Anna usually only features one or
two guests, so to have a studio full of guests
is always exciting for me. Just like last month, this
show is unscripted, so we're going rogue that puts all
my Toastmastering skills to the test. And for those of
(00:51):
you who don't know what Toastmasters is, it's an international
organization designed to help people become better communicators. This episode
well basically be one table topic question after another, and
it will also be mixed in with some great conversations,
so I'm really looking forward to that. I am blessed
(01:11):
to have an awesome producer here today. Thank you Rachel
Gott for stepping up and accepting this challenge.
Speaker 3 (01:20):
Viewers, so welcome, and I'm happy to be here and
I'm excited to chat with everyone.
Speaker 1 (01:26):
I know me too. We have a great studio audience today,
and just like Fast Time, I'd like to start with
REEF introductions from our attendees, and then we'll start the
Q and A session. I'm going to start with Ashley.
Ashley DeMarco, can you please tell us a little bit
about yourself, your relationship to THHD, whether you're a heart
(01:48):
mom or an adult with a CHD. I have a
feeling I already know the answer since I found Sweet Shirts. Yes, yes,
we already saw my shirt in the beginning.
Speaker 4 (01:57):
I'm Ashley. Was born with my heart patient. I was
born with homeryatrijia intact particular septum with right flow angioplasty
with right heart plant operation like the short is pa IBS.
In twenty eighteen, I had a pacemaker place for six
and I syndrome, and then over the years I developed
other things like right ventric hypertrophy, arrhythmias and my new
(02:21):
thing is cardiac autonomic neuropathy.
Speaker 1 (02:25):
Oh well, yeah, it's a lot of new lot.
Speaker 4 (02:29):
Yeah, so a lot of new things as a young
adult trying to navigate the world.
Speaker 1 (02:35):
Yeah, that is that's a lot to navigate, Yes, as
an adult. Were your parents there by your side anyway?
They're always there. My parents are alwaysool. Yeah. I love
hearing that. Yeah, welcome to the episode today. I'm excited
to get to know you. Yeah. YouTube. The second person.
Speaker 2 (02:56):
Who came in the room was Michael Leban.
Speaker 1 (02:58):
He's no stranger, hard to heart with Anna, but maybe
not everybody there's him.
Speaker 2 (03:03):
Michael.
Speaker 1 (03:04):
Let's go ahead and let you unmute and tell us
a little bit about your relationship to PhD.
Speaker 5 (03:10):
My daughter was born with double outlet right ventricle and
she was also autistic, and at age fifteen, she succumbed
to epilepsy. And then after that, I was on your
program and you asked me if I would do a
short series on grief, and I said, okay, a short series.
(03:31):
How many is that? And you said twelve. I want
to do it over the course of a year on
my show. And I said, well, okay, that sounds like fun.
I'll give you three, and if I'm still alive after three,
we'll do twelve. Then that was almost eight years ago
and we're still doing it, and we're.
Speaker 1 (03:47):
Still I don't know, episodes later.
Speaker 5 (03:49):
I don't know how it's going to end, truly show,
how will it end? I don't know.
Speaker 1 (03:56):
It's well, a lot of fun. We've had a lot
of laughter, which seems bizarre for a podcast from grief.
Speaker 5 (04:03):
That's something that needs to be said. A lot of
people I know won't listen to my program because they're
not currently grieving, or grief sounds like a downer. It is.
I don't want to take that away. But what we
try to do is to celebrate lives of those who
are not with us. Often we share memories that make
us laugh and giggle and shortal, and generally we have
(04:24):
a good time, which is, like you said in Congress,
for a show about grief, but there it is.
Speaker 1 (04:31):
What I love about our program, which is called Berief
but still me Friends, is that we have learned that
grief shared is divided and joy shared is multiplied. So
we don't mind sharing tears because we know that we're
in a safe spot with friends, and we know that
(04:51):
sharing that grief makes us feel better, and it Michael
always makes us laugh, so that always makes us feel
good too.
Speaker 2 (04:59):
Man.
Speaker 5 (05:00):
Part of my job description.
Speaker 2 (05:01):
It is definitely part of your job description. Thanks for
being here today, Michael.
Speaker 5 (05:05):
I appreciate your pleasure, my pleasure.
Speaker 1 (05:08):
Next, we have a dear friend of mine who was
in Season Wine and multiple times since Season Wine. That
is Rita. Rita, would you unmute your mic and talk
to us about who you are and what your relationship
is to THHD.
Speaker 2 (05:25):
Hello, Lena, I've been involved with your show for a
very long time. How many years is it now?
Speaker 1 (05:35):
Eleven years? Can you believe it? Rita?
Speaker 2 (05:40):
And of course I knew you long before that through
the list service we used to have to use to communicate,
which is also where we met Michael. Yes, definitely. I
am the mother and grandmother of HD or. My daughter
was born with Pracaspeditrijia, and my granddaughter was born with PAPVR. However,
(06:05):
we didn't know about her part in effect until she
was eighteen years old, seventeen eighteen, and she had to
have open heart surgery for that, so that was quite
a shock course, it.
Speaker 1 (06:17):
Was, and I was fortunate enough to have all three
of those lovely ladies on Hard to Heart with Dianna,
and we actually talked about that though. I can put
that link to that show in the show notes because
it was a really good episode.
Speaker 2 (06:31):
Yeah, it was if it on a lot.
Speaker 1 (06:34):
We've talked about a lot more than that on the
show Guilty.
Speaker 2 (06:39):
I've been involved in the heart world for quite a
long time.
Speaker 1 (06:42):
How old is she forty one? That just doesn't seem possible.
Speaker 5 (06:47):
Yeah. Can I just say we're out of that because
when we met on the list, sir, I think she
was a teenager. Yeah, sent me a photograph of the
family in snow in front of your house. Yeah, and
she was this thin, little teenage kid having fun. And
I can't believe that's forty one years old now, because
it just gosh.
Speaker 1 (07:07):
I first got online twenty eight years ago, and you
were one of the first people I met, Rita, and
you gave me so much hope because at that time
I didn't know any other single Venturaco kids that old.
Most of the people I knew they were still like
my child of toddler or babies. Most of the people
(07:30):
I knew actually had children younger than mine. Wow, what
do you want? I'm happy to have you here. And
I was sad to learn that your granddaughter also had
a heart condition, but I was so proud of the
way she handled it.
Speaker 2 (07:45):
What a pro y hadn't she quite involved? She's in
nursing school, she'll graduate in May, and yeah, she's been
very good about explaining everything, going to different lessons that
her professors have invited her to inform the students about
(08:06):
HD and her experience. So I think that's good. She's
spreading awareness absolutely.
Speaker 1 (08:14):
And then we had Amy Earhart, who was also here
for the episode in September, So welcome Amy. Can you
tell us about your relationship to HD? Hi, thank you
for having me. Yes, I was born with hypoplastic lock
chart syndrome and actually on Saturday the nineteenth, I.
Speaker 2 (08:33):
Will be trying forty two. So super excited to celebrate my.
Speaker 1 (08:37):
Birthday every year. I just feel keep getting better and better.
I had a very wonderful childhood growing up with fantastic
My parents were great. To meet my family friends, I
would say, like skipping to adulthood. I am an extremely
healthy HLHS patient. I work out pretty much five days
(09:02):
a week.
Speaker 5 (09:03):
Wow.
Speaker 1 (09:04):
Yeah, going to office visits is fantastic. The motto is
if it's not broken, don't fix it. So things have
been status quotal for a really long time raising awareness
through a fundraisers back in my hometown. We just raised
eighteen thousand dollars through a fundraiser called put Around Koalita. Basically,
it's where small businesses come together and they each filled
(09:27):
their own cutting green, we get donations. We had so
many different things for the kids to do. It was
really just a family fun day and we raised a
ton of awareness and funds and then we were able
to donate those. So things have been fantastic. Recently started
a podcast on my own for seveste awareness. It's just
amazing and I got to meet you along the way,
(09:48):
so that's also been very fantastic.
Speaker 2 (09:51):
It has been fantastic. And Amy's been on my show,
so I'll have to put a link to that episode
as well. In this show notes, all of you can
learn a little bit more about her. But for those
who haven't heard the show before, can you tell them
how your HHS has been handled?
Speaker 1 (10:06):
Yeah? So three are transplant. Yeah. I was very lucky.
I'm born in eighty three. The only surgery that I've
had to have thus far was in eighty seven, and
that was the Fontam procedure. And in two thousand and
nine they thought I was going to have to have
a revision. Thank goodness, it did not happen, and since
then I've been very healthy. I had my first pacemaker
(10:29):
at the age of eight, and then in twenty seventeen
I had a pacemaker place for agro leads and with medication,
everything has just been fantastic. I have been so lucky
and blessed that I have not had to go through
a lot. It's so wonderful to care and as a
heart mom, and I'm sure Rita can attest to this,
and Michael as a heart dad. This is what we
(10:51):
wanted to hear, that our kids who were born with
funky hearts could live a happy life and wouldn't constantly
be in a hospital. I wouldn't that we be faced
with difficult decisions to make regarding their care. So you're
the poster CHOBD for what we wanted people, Well, thank
you a big deal. It feels so good to be
(11:13):
that and see that. I don't think when you're younger
you understand the gravity of what it means to get older,
and as you get older, it's just every day. Granted
you have your ups and downs, right, but every day
it's nothing to be thankful for Yeah, I agree one
hundred percent. I'd like to take a brief moment to
(11:33):
thank our newest our Tart with Anna sponsor Make You Heartworks.
And for those of you who don't know about Heartworks,
it's a nonprofit organization whose mission is to find a
cure for kanjaba heart defects. Stay tuned because later this
year we'll be doing a future episode with them where
we can learn more about them and especially about a
(11:54):
new project they have that's going on. Because most of
you know, Heart to Heart with Anna is not intended
to be substitute for professional medical ad vice, diagnosis, or treatment.
This is just a live discussion by members of the
COHD community. Any opinions expressed in this episode are not
those of Hearts Unite to Globe, but of the host,
who is me and my guests. Our discussion today is
(12:17):
to help us learn a little bit more about safety
issues during the holidays, especially when you have a congenital
heart defect. We are recording this episode in October, and
in the month of October in the United States, Halloween
is a big deal. Children in our country often dress
up in costumes, they go trick or treating, from house
(12:38):
to house or attend Halloween parties. Never Since my kids
were little, it was common for churches to have special
events for children.
Speaker 2 (12:47):
Sometimes instead of Halloween.
Speaker 1 (12:49):
They would call them harvest festivals or something else if
they didn't like Halloween. And there are a number of
religions that don't practice Halloween, so it makes sense that
they would have a hardest festival instead. A lot of
people when my kids were little, which was over twenty
years ago, were not as keen on going trick or
(13:12):
treating because there were stories for decades about people putting
raizor blades and apples or tainting the goodies somehow, and
so going door to door was not as popular when
my kids were little as it was when I was little.
And Michael, I would love to know about when you
were little in New York if he went trick or
(13:33):
treating as well, and you too, Rita, because we're the
parents here in today's session fifty, we're the older ones.
So let's start by talking about safety issues, especially regarding Halloween.
What do you do to stay safe during Halloween and
do you have any tips or tricks that you can
share with my listeners. I want to start with you Michael,
(13:55):
because I know you have a story here. I remember
growing up in New Jersey and going old. I remember
having to wear a sat over my Halloween costume and
being so mad because nobody could see more Halloween costume
because I had my coat over it. Did you experience
that too?
Speaker 5 (14:15):
It was fun, It was great. It was chili. We
had a couple of things. My neighbor around the corner,
his parents every year would set up this huge vat
and boil hot dogs, and they were unlimited, and so
we all went over there and paid that on the
haunt dogs. We went from place to place with relative safety.
(14:37):
I had one nasty neighbor who would not donate to
the UNSEF because he was convinced we were all stealing it.
If you remember, UNICEF had those orange boxes and were
asking them too to put in a penny. The school
gave out this box that you had to put together
and it was for UNICEF, and we were asking people
for a penny and the boxes becoming pretty heavy. We tricked,
(15:00):
we're treated, We got candy. There was always some story
about the weird neighbor on whatever street, but nothing ever
panned out. We heard all the rumors about equal things
like the razor blade scam and all the other stuff.
But most of the time we just said, that's not here,
that's somewhere else. We don't do that. And it was
great until it just got too old to do it. It
was a lot of fun. Yeah, it's not a holiday
(15:22):
I would celebrate now.
Speaker 1 (15:23):
Would you not celebrate it because you're in Israel now
instead of in New York.
Speaker 5 (15:27):
It's not a Jewish holiday. All Saints Eve has nothing
to do with us. We loved it as kids because
we loved the candy and we didn't pay much attention
to anything else. But here in Israel, American immigrants with
small children might have a party. Okay, yeah, and they
might have a party. They might set up some trick
or treating in their building just to give the kids
the experience of doing that. But it's not really a
(15:49):
big thing here. We don't really have it.
Speaker 1 (15:52):
For those of you who don't know, Michael was raised
in New York, but he did ali Ya to Israel. Gosh,
you were in college, right.
Speaker 5 (16:02):
No, Actually, my junior year in college, I spent a
year here studying, and then I went home to finish,
and then in nineteen eighty one, I came back and
I've been here pretty much since. It's been a long time.
Speaker 1 (16:13):
Yeah, to tell me what the Halloween was like for you,
Rita that committing dark ages.
Speaker 2 (16:22):
My first memories of Halloween. I lived in Cleveland, Ohio.
Speaker 1 (16:25):
And I was poor.
Speaker 5 (16:27):
So did they have candy?
Speaker 1 (16:29):
Then?
Speaker 2 (16:30):
Yes? They did? Okay, so we dressed up and we
went tricker treating and I imagine it was cold, but
I don't really remember. I remembered the plastic mask we
would wear. My gosh, what does all aful my dear.
Speaker 1 (16:44):
Sounds so rridful.
Speaker 2 (16:46):
They were so horrible.
Speaker 1 (16:48):
Yes, I remember that I had the.
Speaker 5 (16:50):
One with the moving jaw, so we would like the talking,
moving me off mask.
Speaker 2 (16:58):
And then the costumes they were all plats. Again, yeah,
I don't know, it's the other material. I never had
it closer to my skin because it was always cold,
so I always had a T shirt and a shirt
and then the little plastic costume and in my coat over.
Speaker 1 (17:15):
It's good to see the plastic dome anyway, were very flammable.
Speaker 2 (17:20):
Yes, it were, and that's they don't make them anymore.
Speaker 1 (17:25):
We moved Toston and then it was fat.
Speaker 2 (17:28):
That's probably why I don't remember being cold.
Speaker 1 (17:32):
I want to ask the parents, since all three of
us had children with HD, after you had a kid
with the THHD, did you treat Halloween differently or did
you do the same thing with your HD or that
you did with your other kids, same thing.
Speaker 2 (17:49):
We were told to treat Victoria normally, naturally, the way
we treated our other kids, and that's the way to do.
Speaker 1 (17:56):
Yeah, as too, what about you, Michael.
Speaker 5 (17:59):
My kids never experienced Halloween the overall born in Israel. However,
had we done that before Leola was born, we would
have done it with her because we did everything the
same as much as we could. We had similar advice
from the physicians. I remember just after she was born,
and just after she was diagnosed, she had a cold
(18:20):
and I called her carreologist. He said, what are you
calling me for? She has a cold. Call a regular doctor.
Treat like a regular kid. It hadn't occurred to me
that she could be a regular kid. So yeah, we
would have probably done it the same.
Speaker 1 (18:31):
Yeah, we did too.
Speaker 2 (18:33):
The difference was by that time in history, we would
always chuck the candy when it means because things that
happened by then made you and that's fair we made
changes too.
Speaker 1 (18:50):
Compared to when I was a kid. Growing up, I
only took my kids trig or treating to neighbors that
I knew. We didn't go to complete strangers. When I
was a kid, you just walked along the street. You
may not have known all of the people that you
went to. But by the time I had.
Speaker 2 (19:07):
Children, we only went to people we knew, and the.
Speaker 1 (19:12):
Churches had started to do those festivals, and we always
ended up going to those because they were so much fun.
Now I want to talk to the hdars and I
want to know how they treat Halloween and if they
have any special tips or tricks for staying safe during Halloween. Amy,
I'm going to start with you because you're the oldest
(19:33):
shown person here. Okay, yeah, So honestly, growing up my
parents for the same way, I appreciate parents who saiday,
they treated their PhD KULD like their normal children. Urst
my heart to hear that so many are restricted so often.
I grew up very normal, So I had no restrictions
(19:56):
growing up. I would say, because the season right to
get your flu shot. But beyond that, life was fairly easy.
When it comes to germs and things like that. I
feel my parents would have done the same thing all around.
There was nothing odd or fantastic or anything. I grew
up in a very small town, so trick or treating
(20:17):
we went to every single house, and a lot of
times we trick or treated by ourselves as well, so
that was also very fun and different. I think our
community back then was probably a thousand people in our community,
so we were very small. So yeah, it made things easy.
I think. I so appreciate that. And your parents let
(20:39):
you go alone.
Speaker 2 (20:40):
Yes, there was one age, oh I would saying.
Speaker 1 (20:45):
I think I would say great school.
Speaker 2 (20:46):
We were probably four fifth, sixth grade.
Speaker 1 (20:49):
Everybody in the community was out, though, so people would
come up town and everybody was out. You would be
out with friends. It would be bad age all the
way up until your high schoolers. It's very interesting because
it probably does sound a little oh my goodness, but
the smallness of our community back then to the honest
(21:10):
kids still run around today. So it's just a tight
knit community. And I couldn't have asked for more. I
love that. I absolutely love that. I hated that we
feel like we have to be so overprotective of our kids.
Isn't interesting because I've been watching House on our international
with my husband. That's our guilty pleasure at night. You
(21:34):
see these other communities in these other countries and the
children seem to have a lot more freedom. It feels
like we have become a society that is extremely overprotective
of our children. And it's understandable you don't want anything
bad to happen to your kids, but I think it's
so restrictive. Whish we all lived in the Yeah, what
(21:56):
you're talking about? Yeah, that was truly the beauty for
were Yeah, Okay, Rachel and Ashley, I'd love to hear
from the two of you if either one of you
have something to share about growing up with the CHD
and how you dealt with Halloween.
Speaker 3 (22:12):
For me, like everybody else, my mom treated me normally.
Both my parents did. We didn't know about it when
I was a baby, so you can't really act accordingly.
But I was never singled out or treated differently when
it came to howuring.
Speaker 1 (22:28):
But you also didn't really know about your CHD for
quite a while, right, Rachel Rack And what about you, Ashley?
Speaker 4 (22:39):
I mainly did special events or Halloween parties with preschool kindergarten.
I did go out and did trick or treating normally,
but I.
Speaker 1 (22:48):
Was always getting tired easily.
Speaker 4 (22:50):
My speech was not there because I had a stroke
as well, So parties were my main thing of pumpkin patches,
carving pumpkins, making treats, projects and stuff.
Speaker 1 (23:04):
See that's good to hear, though, because not everybody is
going to have kids out there who have PhDs that
allow them to live a completely normal life, and.
Speaker 2 (23:13):
It's nice to know with a few modifications you can
still have fun.
Speaker 1 (23:18):
Yeah, thank you for sharing that.
Speaker 5 (23:19):
That's it.
Speaker 2 (23:21):
Yeah.
Speaker 4 (23:21):
I wasn't really big on Halloween stuff, more like dressing
up and costumes were bigger to me, meeting having fun with.
Speaker 1 (23:28):
That, not really candy as much. Yeah, I hear you. Yeah,
I hear My mother was very restricted. We could go
out and do the trigger're young, but we were only
allowed a certain amount of candy every day, and my
sister used to take some of the Halloween candy. My
mom's not alive anymore, so I can tell the story.
But yeah, my sister used to take it. She used
(23:50):
to hide it under the bed so my mom would
have so she could work here deeper out the year.
Speaker 5 (23:55):
I'm shogging. Oh no, I'm shocked. And stunned.
Speaker 1 (23:59):
Yeah, though my sister was a little stinker.
Speaker 4 (24:04):
I'm sure like hearing your stories on my stories as
younger trigger triggers.
Speaker 1 (24:10):
It wasn't much of candy being out doing that kind
of stuff. It was more like being with friends and
decorating and doing all that kind of thing instead.
Speaker 2 (24:19):
It's just probably a lot healthier for us, yeah, exactly,
instead of standing how many mountains bars can you eat?
Speaker 5 (24:26):
Yeah, Oh, you'd be surprised. Sometimes you feel liking that,
sometimes you don't.
Speaker 1 (24:35):
Friends. I love it when you all give me feedback
on Hard to Heart with Anna episodes. It helps me
to improve programming for you and to make sure that
I'm doing what you want to hear. Please send me
messages on Facebook or Instagram or LinkedIn. You can also
send me through old fashioned email Anna at Heart to
heartwana dot com, or you can also send one on
(24:58):
the Hearts Night the Glow website. We actually have a
form right there that you can fill out, So visit
Heartshutniteglobe dot com and you can fill out a form
there as well.
Speaker 2 (25:09):
Now we are back for the last segment.
Speaker 1 (25:12):
This has gone way too fast. We've had a lot
of laughter and shared some really fun stories. But now
I would like to invite my audience members to share
a favorite episode or make a comment about an episode
you've heard recently, or to suggest a future topic or
a heart to heart with Anna episode. Last month, when
(25:34):
we did this, we got so many fabulous ideas for episodes.
I am super excited about that. Who would like to
go first and comment on an episode or make a
suggestion for a future episode? Yes, Michael, I.
Speaker 5 (25:51):
Guess it's no secret. About a month and a half ago,
I had heart surgery. I had a valve replacement that
a bypass. I wish Leo over here to see that
I have the scar that she's always had. And I
would wonder what the relationship would be between kids who
went first and parents who went second, and if there's
something there that bonds them because we shared something that
(26:14):
nobody has now. I can't ask her she's been gone
for almost twelve years, but I would love to see
her reaction, because she was autistic and also not I
would just want to know what you would think and
say I got one of those, and we could share
memory stories. I don't know something, and it's possible now
for you to find HD kids who are old enough
to talk about that and maybe find a parent who's
(26:36):
had surgery and can see how that works out between them.
Speaker 1 (26:40):
I love that suggestion. Oh my gosh, that is such
an awesome suggestion. It's interesting because a couple of years ago,
I did an episode with a father who got a
tattoo that looked exactly like his daughter's scar because he
didn't want her to be the only one who had
(27:01):
a scar on her chest. And I actually interviewed that father.
It was a Bucky family and they're part of the
Heart Community Collection group, and it was a really interesting episode.
But he didn't have a scar like you do. You
have a legitimate scar that is just like what Leelle
would have had. So I love that suggestion.
Speaker 5 (27:23):
And I got a scar, and I got a bunch
of poke holes. We could trade stories. Oh my god,
she I went second, and I wish I could talk
to somebody about that.
Speaker 1 (27:33):
Yeah.
Speaker 2 (27:34):
Yeah. Victoria's godfather had to have heart surgery after they
already had a relationship, but they became members of the
Zipper Club together. For Victoria, it was neat to see
that somebody older had those scar like hers.
Speaker 1 (27:50):
Did the godfather ask her any questions about having had
the surgery, or when he was preparing for the surgery,
or was there even fine for that. There was no
time for that, it was margenty m Yeah, but that
might be interesting to have the two of them. We
should put feelers out though, and see if there's anybody. Oh,
(28:14):
I'm sorry to hear that. Wow, that's an excellent question, Michael.
That would be a fascinating show, especially if the child
is old enough to be able to verbalize how they
feel and what it feels like to them to see
someone else, say lab having the same scar that they do.
(28:35):
I think that's fascinating. Okay, that is a messed do show.
Now we just have to find a guess. It would
be interesting to see who comes forward with that, because
I think that is fascinating. I actually tell us what
you have to say. I was. I grew up going to.
Speaker 4 (28:51):
Heart camp, and I didn't know anybody else until I
went to heart camp and met people.
Speaker 1 (28:55):
With HD, right, and that's a great way to meet
person to not feel alone. You didn't have anyone else
in your family who had a scar? No, Yeah, it
was the same way for my kid. We didn't have
anyone else in the family either. All the grandparents had
not had heart attacks or had any heart issues. Sarah, Rita,
(29:20):
do you have another suggestion, Rita, I was.
Speaker 2 (29:22):
Going to comment on shadow that we did. I can remember.
It was quite a few years ago, and I was
in the car. We were driving in California and we
did the show with me on it from the car
with me. Well, I ever forget that interesting reporter. Yeah,
(29:50):
it was Michael and you do and me.
Speaker 5 (29:53):
I remember that.
Speaker 2 (29:56):
Such advised.
Speaker 1 (29:57):
But there was another live show that we did. Do
you remember, Michael?
Speaker 5 (30:02):
I remember reading from the car. I absolutely remember that.
Speaker 1 (30:05):
Yeah, that was another live show. And if I'm not mistaken,
I was on vacation when we did that as well.
I was in a coffee shop, so nobody was where
they were supposed.
Speaker 5 (30:15):
To be except for Michael, and never where I'm supposed
to be.
Speaker 1 (30:21):
That's stricter. Yeah, but that was back in the day
when doing a live show was terrifying. This isn't quite
as terrifying because even though I'm doing it live, I'm
not broadcasting it right this minute, friends, I will be
out of tea a little bit.
Speaker 2 (30:36):
But it was I think that one wasn't it? It
was really live because when I was using at different studios.
Speaker 1 (30:43):
We didn't have zoom back then. That's how long ago
that was. We did not have zoom. I was using
blog talk radio to create the podcast, and they had
a feature where you could do it live and as
you were recording, it was going out on the airwaves,
which lent itself to many opportunities for problems, many opportunities
(31:07):
for problems, and if there was a problem that could
be had, I had it while doing a live show,
and that's why I stopped doing live show. Spit with
not Oh my gosh, I don't know. We just didn't
even get the kind of interests that I thought we
would get. And we had a couple of people who
called him that were inappropriate. They were talking about acquired
(31:28):
heart disease and trying to promote their products instead of
being focused on Kajo the heart disease. So I stopped it.
But this is really fun to have a studio audience
like this and just get a chance to talk to people.
For me, this has been a lot of fun.
Speaker 2 (31:45):
We're not going to do any episodes in cars there
well that you never know if.
Speaker 1 (31:52):
Somebody comes to one of these live shows, they could
be in your car that would be interesting, Okay, Ashley
a lot of friends that are curious about her stuff.
Speaker 4 (32:02):
If that would be a thing of friends of NONHD
not knowing and explaining and figuring that out. Would I
don't know if that would be a thing.
Speaker 1 (32:14):
I've never done a show like that before.
Speaker 6 (32:16):
That's really fascinating of how their perspective on HD is. Yeah,
and what questions they had but you're afraid to ask.
Speaker 1 (32:27):
Yeah, that would be good. I would No, that would
be great. I would just need help in finding this.
Speaker 4 (32:36):
I really likeli Idea that was friends with people and
they've left because of this and they didn't want to
deal with it.
Speaker 1 (32:43):
Maybe teaching them and learning. So I've been going through
a lot of that. If I've lost friends because I've
gone through so much and it's never consistent and I'm
never there. Yeah. I had a guess toast once who
did a show called Compassion Fatigue. It was a really
(33:07):
good show. It was actually a hard dad that did it.
Chris Perez was my guest host and he did an
excellent job and he talked about what compassion fatigue is,
which I had never heard of before. But it's where
people get worn out being worried about and caring about
somebody else and yeah, they can't handle it, and so
(33:32):
what do you do for that? And in his episode
he actually talked to somebody who discussed what compassion fatigue
is and how to handle that. I think your idea
of having friends who have who are not affected by PhD,
but who knows somebody who has a THHD and questions
(33:52):
that they may have that they're afraid to ask and
maybe even share some experiences that they were confronted with
certain situations didn't know how to react to it. I
think loge times people will avoid experiences where they feel
like they may look stupid or that they just don't understand.
They don't want to say the wrong thing. Michael has
(34:14):
a million stories about this, dealing with grief where you
lose friends when you lose a child because they just
don't know how to handle that. And I imagine sing
you go through meeting of hay Anker peacemaker surgery or
oh my gosh, she's bing you medications.
Speaker 4 (34:31):
Again, I'm always in and out of the hospital and
never there does happened back in October of last year
of how I lost my friends because I was really
sick and I never could recover from that.
Speaker 1 (34:43):
So that's how I lost that group of people a friend.
And it's so hard because it's not bad enough that
you're going through a major medical crisis, but then you
leave your support groups, yes, and how to get that
back from other ways, And that's a different show. That's
a totally difference. That's totally different. But yeah, it'll be something. Yeah,
(35:07):
that would be a really good episode to do. I
know you're not the only one. That happens to people
in a brief community as well. And in a way
it's a form of bereavement because you've lost your health
and then you've lost your friends on top of it.
So it's a lot of loss, Michael.
Speaker 5 (35:26):
If you're a parent of a'sty child, you can lose
your friends if you talk about your kid too much,
you walk in the room, they just owe it's him.
It's a real thing. It's a real thing.
Speaker 1 (35:37):
Bunny here than anyone.
Speaker 5 (35:39):
They get tired of hearing it, you know.
Speaker 2 (35:41):
I think a lot of people don't want to face
that kind of thing, and it makes them uncomfortable that
you have to face it.
Speaker 5 (35:50):
Quite possibly, quite possibly, I also think that I can
overtalk it, but Leelle became my calling card. I walk
into a room and said, Hi, I'm Mike, my daughter
as a PhD. And it was identifying myself through her,
and that is understandably difficult. Un friends and I didn't
lose too many friends, but I could tell that they
(36:12):
were tired. They were tired.
Speaker 1 (36:15):
That's had compassion fatigue again.
Speaker 2 (36:17):
I remember that episode I was still long about.
Speaker 1 (36:20):
Yeah, christ is such a good job, hmes.
Speaker 5 (36:23):
That was the first episode I heard. The guest was
Pastor Dan who later was on our show on bribas
still May and he talked about compassion fatigue and caregiver
burnout and it's real, but it's also vicarious. I may
or may not be burned out, but my friends get
burned out by hearing about it all the time, and
(36:44):
that's something you have to watch out for.
Speaker 2 (36:46):
I don't really share all that much about Victoria with
my friends or with my close friends, probably, but not
with my friends at Aren't Clothes.
Speaker 1 (37:00):
Well. It's interesting because when I created my Facebook page,
I created a Facebook page for family and high school friends,
college friends, and then I created a separate Facebook page
for my part friends because I talk about hope with
them and it's like Michael said, I knew my friends
and family would probably get sick of hearing me talk
(37:21):
about CHD all the time, and they would get compassion fatigue.
So I just had two separate pages, and then something
happened and I can't get into that old page, so
I ended up having to blur it together. I haven't
lost that many people, but I actually have lost a
couple of people who are infriended me, and I wonder
(37:43):
if that's why they unfriended me, because they can't handle
all the PhD stuff that's mostly where I spend my time. Yeah,
because it's not like as coming from a pasion myself
of you can't just walk away from it. It's life exactly, Clay,
and here I have to keep going for it, and
it's appears the same thing exactly. Yeah. Yeah, yeah, I
(38:09):
can't just saying I'm going to break I want to
break from us. No you can't.
Speaker 4 (38:13):
You wish but no, no, And I having mess what's
the artist of other friends of not understanding and just
wanting it to be okay? And I've had friends of
if I would just get better, then I could just
be more happy or be more present.
Speaker 1 (38:28):
But that's not how life goes and this HD. Yeah,
thank you for sharing now with me, because you're the
first person who has suggested that specific type of show,
and I think that would be really good. But that's
something I'm actually going through right now, is why. That's
what's sorry. Yeah, it's not good. Yeah, you know what,
(38:53):
it's not all good. But if we can inform people,
if we can educate people, because I think that's a
big part of the problem.
Speaker 2 (39:00):
Is people don't know what to do and they don't
know how to act.
Speaker 1 (39:05):
And let's face it, it's easy to be selfish, it's
hard to be compassionate. It makes you vulnerable and people
don't like to be vulnerable. My producer has been so
good at letting me know out my time. So that
does conclude this episode of Heart Tart Within. I want
to thank all the people who took the time to
(39:26):
be part of our live studio audience, and special thanks
to my producer, Rachel Gott Please for listening today, my friends,
and thanks again to our newest sponsor, Heart Works. We're
so excited to work alongside you as we all envision
a world without pad to heart defects. But until that time, remember,
my friends, you are not alone.
Speaker 5 (39:49):
Thank you again for joining us this week. We hope
you have become inspired and empowered to become an advocate
for the congenital heart community. Heart to Heart with Anna
with your host Anna Jaworski can be i heard at
any time wherever you get your podcasts. A new episode
is released every Tuesday from noon Eastern time.
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