0:00

What was it like to grow up with a congelato heart

0:02

defect in the 1980s and the 1990s

0:05

? How did children with congelato

0:07

heart defects find one another before Facebook

0:09

and Instagram ? What kind of

0:11

relationship could be forged by

0:13

attending a special summer camp for children

0:16

with congenital heart defects ? Welcome

0:22

to Heart to Heart with Anna . I am Anna

0:24

Jorski and your host . I am also a heart

0:26

mom to an adult who was born with a single

0:28

ventricle heart and who was born in 1994

0:32

. This is the reason I am the host

0:34

of your program . Today's

0:36

guests are Emily Falcon and Mabel

0:38

. With me today are two very

0:40

special ladies . Emily Falcon was

0:42

born in 1982 and at

0:44

seven weeks of age, she had a heart attack

0:47

that destroyed 40% of

0:49

the left side of her heart . She was

0:51

born with a condition known as ALCAPA-- anomalous

0:54

origin of the left coronary artery

0:56

from the pulmonary artery . Emily

0:59

has had two open heart surgeries , one

1:01

at age six and another at age

1:03

35 . The second

1:05

surgery provided Emily with the quality

1:07

of life she never could have dreamed of . Emily

1:11

has written a memoir about her experiences

1:14

of growing up with a congenital heart defect

1:16

and other medical conditions

1:18

that prevented her from having the quality

1:21

of life she did dream of In

1:23

her memoir , from the sidelines to the

1:25

finish line , she shares how her condition

1:27

made her feel different , but

1:29

how she persevered and how her

1:31

last surgery totally changed

1:34

her life . Throughout her memoir

1:36

were introduced to Mabel , Emily's

1:38

best friend . Mabel was also

1:40

born with a congenital heart condition

1:42

. She was born with transposition

1:45

of the great vessels and has also had

1:47

open heart surgery . Mabel also

1:49

developed six sinus syndrome and

1:51

required a pacemaker . Mabel

1:54

and Emily met at a summer camp for children

1:56

with congenital heart defects and struck

1:58

up a friendship that has lasted for decades

2:00

. Today , Emily

2:03

and Mabel are here to talk about growing

2:05

up with a congenital heart defect , how

2:07

their friendship has blossomed , and

2:09

we'll also talk about Emily's upcoming book . I'll

2:13

talk with Emily in the first segment and then with Mabel

2:15

in the second and then the third segment . We'll

2:18

all be together in the studio . So welcome to

2:20

Heart to Heart with Anna . Emily , Thank you so much for

2:22

having me . Ina , I'm

2:25

so excited to talk to you about

2:27

your book and to me , Mabel , I'm super

2:29

excited about that . Let's

2:33

talk about first of all

2:35

what your heart condition is , because I think it's a fairly rare condition

2:37

and I don't think many people know about it . Sure

2:42

.

2:42

Alcafua occurs one in every 300,000 birds

2:44

, so yes , it's very rare and it means the left coronary

2:46

artery arises abnormally

2:48

from the pulmonary artery and

2:53

after the heart attack I had as a baby

2:55

, it damaged my mitral valve so that it regurgitated

2:57

blood instead of circulating it . Wow , that's a lot to

3:00

take in .

3:02

When I first learned about your condition

3:05

, I reached out to one of my

3:07

medical advisory board members

3:09

because I didn't really know much about Alcafua , so

3:14

I asked him if he would explain it

3:16

a little bit better to me , and he said that Alcafua refers to

3:18

a condition where the left coronary artery originates

3:21

from the pulmonary artery instead

3:24

of from the aortic . As

3:26

the pressure in the pulmonary artery fails in

3:28

the weeks after birth , as the lungs fully expand , there's

3:35

not enough pressure to propel the blood into

3:37

the left coronary artery to perfuse the heart muscle , resulting

3:39

in a heart attack . The left

3:41

ventral coel can be significantly damaged

3:43

. Although blood from the right coronary artery can cross over

3:45

to the left via the

3:48

blood from the right coronary artery

3:50

can cross over to the left via

3:52

collaterals and a lot

3:55

of you have heard about collaterals because it's

3:57

not specific to alkape

4:00

. Other heart conditions can also

4:02

cause the development of collateral vessels

4:04

being created in the heart . This

4:07

does protect the heart to a degree and

4:09

typically this occurs around a month or

4:11

two of age . Surgery can

4:13

be done to reattach the left coronary

4:16

artery to the aorta , restoring

4:18

normal blood flow , but I think

4:20

that is something that can be done

4:23

now and maybe was not as commonly

4:25

done when you were born .

4:26

Emily , yes , that's correct . They

4:29

bypassed it and tied it off , and he

4:31

instead .

4:33

Wow , so you're a living

4:35

legend in some ways , aren't you

4:37

?

4:37

Yes , that's the embarrassing to

4:39

say , but I think so in the medical world

4:41

Hi

4:44

there .

4:45

You feel far too young , I'm sure , to

4:47

be a living legend , but I think it's really

4:49

cool that you not only

4:51

have survived this that is amazing

4:53

but also that you're willing and able

4:55

to talk about it , because now

4:57

there are more and more adult survivors

5:00

of some of these unusual conditions

5:02

, even though they weren't able to take care

5:05

of that condition way back

5:07

when , like they can do it now . It seems

5:09

like a more definitive fix now

5:11

than what they were able to do back then

5:13

.

5:15

Yes , they weren't very sure what to do with me

5:17

at all and many doctors consulted

5:19

with other hospitals to try to

5:21

figure out , and there were all different opinions

5:23

because no one had really survived before

5:25

me so there were no examples to look

5:28

up . But my doctors decided

5:30

, since I needed that ring , that they should

5:32

wait to do the surgery until I grew , because

5:34

they didn't want to have to replace it if I grew

5:36

too large . So the longer we could wait the

5:38

better . And I did have those

5:40

collateral arteries , which is why I survived

5:43

the heart attack .

5:44

Wonderful , but it's so good to know

5:46

that you understand that well enough

5:48

that you can actually explain it and

5:50

that helps other people to understand

5:52

as well . I know I have a friend

5:54

who was born with hypoplastic right

5:56

heart syndrome and that child

5:59

also developed collateral

6:01

vessels that helped him to live

6:03

long enough to get the surgery he needed

6:05

. So it's amazing to me how the

6:07

body can compensate for some of the

6:09

problems that it has

6:11

in order to allow you to live

6:13

to six years of age . I can't

6:15

believe you were six before

6:17

you had your first surgery . That's amazing

6:20

.

6:20

Yes , I was in congestive heart failure and

6:22

it wasn't smooth sailing . So I don't

6:24

want to paint the wrong picture , but they

6:27

didn't have to do anything until then , even

6:29

though it was considered many other times . You

6:32

know what ?

6:33

that's a really good point because

6:35

, yes , you were in congestive heart failure

6:37

and you're right , it wasn't smooth sailing

6:39

. One of the things as a heart mom

6:41

I worried about with my youngster

6:43

once the heart defect was diagnosed

6:47

was , oh my goodness , what

6:49

if my child gets a bad cold ? Because

6:52

for heart warriors sometimes a bad

6:54

cold can turn into pneumonia

6:56

and stay in the hospital

6:58

. It can even be life-threatening . So

7:01

you're right , those years before

7:03

you have a surgery that prepares your heart

7:05

to function better , it's

7:08

pretty scary .

7:10

Yes , I didn't get pneumonia actually until

7:12

after my first surgery . But I

7:14

didn't go out much as a child because of the germs

7:16

. I couldn't have much salt because of the heart

7:19

failure . I obviously did not play

7:21

sports or do anything very active ever

7:24

until the second surgery . But especially

7:27

as a child and before the surgery , I

7:29

napped quite often . I

7:31

don't even think I cried very much , except for

7:33

the day I had the heart attack because that was too

7:35

much energy and that was how my mom knew something

7:38

was wrong , because I actually cried for the first time

7:40

for a long time ?

7:41

Oh , wow , wow . So

7:43

why did you decide to write a memoir about

7:46

your experience , emily ?

7:48

I wrote from the sidelines to the finish line about

7:50

living with chronic illness because I

7:52

wanted to spread the word that anyone , despite

7:54

their challenges , can try anything

7:56

with modifications and if you

7:58

feel up to something , you should take advantage of

8:00

your health and don't let opportunities pass you

8:02

by . Mabel and I didn't have

8:05

books like this when we were younger to read

8:07

about people with similar illness . I

8:09

read books about children with cancer to try

8:11

to relate to somebody . The Baby

8:14

Sitters Club had a character with diabetes

8:16

but she only mentioned when she was in crisis

8:18

. There wasn't really non-contastrophe

8:21

books . So I just wanted

8:23

to show really the day-to-day life of a non-contastrophe

8:26

chronic illness and that things can

8:28

change and will always be up and down

8:30

, and recently

8:32

Mabel mentioned to me that she has a friend

8:34

of a friend in the early 20s who didn't know

8:36

any of her warriors . Like herself , she

8:39

felt alone and I feel like she

8:41

could benefit from a book like this and it's

8:43

important that , even though we all have

8:45

different experiences , we are part of the

8:47

same community and can provide comfort to

8:49

those who are going through challenges .

8:52

Absolutely , absolutely . What

8:54

was the hardest part about telling your story

8:56

?

8:57

It was very challenging for me to write about my emotions

9:00

. I can write about them in a disconnected

9:02

way without really expressing many feelings

9:05

. But all of my early readers wanted

9:07

more from me and since I've

9:09

experienced AFib as an adult , I

9:11

found it's triggered by emotions

9:13

happy , sad , anger . Anything can do it

9:15

, washing my hair . So I got shut that

9:17

feeling off of excitement or happiness

9:20

. I was worried that writing might trigger

9:22

it . I really had to push myself

9:24

to feel those feelings again in order

9:26

to do it , so that was the hardest thing .

9:34

And Tonight Forever by the Baby Blue

9:36

Sound Collective . I think what I love

9:39

so much about this CD is

9:41

that some of the songs were

9:43

inspired by the patients

9:45

.

9:45

Many listeners will understand many

9:48

of the different songs and what they've been inspired by

9:50

. Our new album will be available

9:52

on iTunes , Amazoncom

9:54

, Spotify .

9:55

I love the fact that the proceeds from

9:57

this CD are actually going to

9:59

help those with congenital heart effects

10:02

.

10:02

Enjoy the music .

10:03

And Tonight Forever . This

10:10

content is not intended to be a substitute

10:13

for professional medical advice , diagnosis

10:16

or treatment . The opinions expressed

10:18

in the podcast are not those of

10:20

Hearts Unite the Globe , but of the hosts

10:22

and guests , and are intended to spark

10:24

discussion about issues pertaining to congenital

10:27

heart disease or bereavement .

10:31

You are listening to Heart to Heart with Anna . If

10:34

you have a question or comment that you would like

10:36

to address on our show , please send an

10:38

email to annajewarski at anna

10:40

at hearttoheartwithannacom

10:42

. That's Anna at hearttoheartwithannacom

10:45

. Now back to

10:48

Heart to Heart with Anna .

10:53

Welcome to Heart to Heart with Anna Mabel

10:55

.

10:56

Thank you , very excited to be here .

10:58

I'm so excited to talk to you because

11:00

I didn't say in the opening

11:02

that Baby Hearts Press is actually the imprint

11:05

for Emily's book , and so I

11:07

have been helping her through

11:09

her publishing process and

11:11

it has been so exciting for me to read

11:14

her book , to see it grow and change , and

11:16

I feel like I know you , mabel

11:18

, even though I don't , so

11:21

today I'm going to get a chance to know you

11:23

a lot better . This is going

11:25

to be so much fun . Let's have you start

11:27

by sharing what it was like to

11:29

go to summer camp for the first

11:31

time , and I want to know did

11:34

you meet Emily at your very first summer camp

11:36

?

11:36

I did . I started going at age seven

11:39

and I think I met Emily a few years later . That

11:41

was the first camp . I was young , that was the first

11:43

camp , but it was a

11:45

real community , as I always said before . It was really

11:48

a place where they

11:50

encourage you to do all the

11:52

things that can do , but

11:54

with a different set of camaraderie

11:57

, without some of the competition that you see

11:59

in other schools it was able to participate

12:01

without feeling that you couldn't keep up

12:04

, and to me that really gave

12:06

all the kids there the ability

12:08

to really participate , to really feel that

12:10

they were going to be embarrassed if they

12:12

couldn't do something another kid could do . This

12:15

was really important to have that camaraderie

12:17

between the other campers , and it was

12:19

a small camp as well , which I think was

12:22

beneficial . All the kids would

12:24

get meds after dinner . It wasn't weird

12:26

to have to go to the nursing at your medicine All

12:28

the kids were going to get medicine .

12:30

And this camp was specifically for

12:32

kids with heart defects right , yeah

12:35

, it was . So did everybody have

12:37

similar scars .

12:38

Yeah , a lot of zippers . Everyone had a zipper

12:41

so it felt it was just common

12:43

to see . It wasn't strange to see Nobody asked

12:45

, nobody looked , if you compare it , because you wanted to

12:47

, not because you felt that somebody was questioning

12:50

. What's that from ? And it was more

12:52

comfortable to share your story . You wouldn't get a story

12:54

back . It was more of a two-way street than

12:56

a one-way street . Are you having to be the only

12:59

one explaining what happened to you ?

13:01

Yeah , and I imagine as a seven-year-old

13:04

, perhaps in school

13:06

kids would notice your scar and

13:08

maybe talk to you about it , and talking

13:10

to those children was probably a very different

13:13

experience than talking to some of the

13:15

other campers 100%

13:17

, very different , coming from a different place .

13:19

Even as kids are curious , they ask questions . I

13:22

don't think children ever mean it in trying

13:24

to make you feel bad , but you can't help but think

13:26

that it has been furrowed training you

13:29

Because it is , in a way , so when you're talking

13:31

to another kid who has an experience they can share

13:33

back . It's a very different experience

13:35

and it bond view in a different way .

13:38

Yeah , I'm wondering when you meet

13:41

somebody at camp because I never

13:43

went to camp as a kid , I've

13:46

never been to a summer camp Is

13:49

it the kind of thing where you

13:51

meet up and maybe

13:53

you ask each other or you notice each

13:55

other's scars and you talk about it and then

13:57

after that are you just a kid , or

13:59

is it something that you revisit over and over

14:01

?

14:02

Yeah , I think for me , Emily

14:04

and I would have been friends no matter what . We

14:07

had things in common . Right , we just got

14:09

along . We're not friends because we

14:11

have congenital heart defects . We're friends because

14:13

we're similar people , but the congenital heart

14:15

defect is a deeper level of understanding

14:17

and connection and

14:20

you rely on each other in a different way . So it's just a

14:22

deepening of a deep friendship , basically

14:24

.

14:25

I love that . I love that . So

14:28

what did you think when Emily said

14:30

she wanted to write a memoir ?

14:32

I was very surprised , as Emily

14:34

said before . A

14:36

lot of things internally , and of course , I

14:39

know a lot about Emily and we share but the

14:41

thought of her wanting to go out and really

14:44

spread her feelings and what

14:46

her experience was surprising

14:48

, but in a great way , because she has

14:50

been through a lot and she's

14:52

conquered a lot and

14:55

I think for her to be able to

14:57

put that out there it's good for

14:59

her too and I think it's good for everyone who's going

15:01

to really hear her story and

15:03

be inspired by it , be comforted

15:05

by it . Emily is always very honest

15:07

and I think the book is very honest

15:10

as well . So have you read it

15:12

? I did . I read it and I learned

15:14

a lot about where I think that

15:17

everyone has things inside them that

15:19

they keep it internally , and so , as close as you are to

15:21

somebody , you can always learn something

15:23

. You can always learn what it felt like for somebody

15:26

in a different way , and so I think hearing

15:28

it was helpful to me too to

15:30

relate to my own experiences and maybe look

15:33

at something with a different lens or a different perspective

15:35

. Yeah , even if it's not exactly

15:37

the same experience , it's still something

15:40

that is relatable to me .

15:42

Has this made you contemplate writing your

15:44

own memoir ?

15:47

I think Emily was really determined . We

15:49

used to write as kids and it's fun

15:51

, I enjoy it , but Emily really buckled

15:53

down and really you have to really have the willpower

15:55

to sit and do it . It takes a lot of effort

15:57

, it takes a lot of time and

16:00

I think I have an interesting story , but I don't know if I have

16:03

the dedication . Emily has to really

16:05

really be able to put that on paper and really feel

16:07

like it really matters to her to feel that she's connecting

16:09

with people and doing something important for people

16:11

, and I think that's probably driving force . It's

16:14

knowing what an impact

16:16

it has . It's going to have

16:19

Absolutely .

16:20

So you said you learned some new things

16:22

about Emily . I think one of the

16:24

things that bears telling

16:26

is that , even though you girls became

16:29

best friends at summer camp , you

16:31

all did not live close to each other

16:34

. You didn't go to the same school , you didn't

16:36

see each other every weekend .

16:38

No , we were of AOL era . We

16:40

were signed on AOL to have instant

16:42

message chats where you get on the on

16:44

top for all hours . But we were far

16:47

apart , and so we had to find ways to

16:49

connect as best that

16:51

we could . We didn't have cell phones .

16:52

We didn't have . Wi-fi .

16:54

I think we would send letters to each other in the

16:56

mail too . Cut out magazine stickers

16:59

different time .

17:01

It was a different time . I still

17:03

have an AOL address , being

17:05

a lot of people actually do . I

17:09

love that . I love it . I think it's fascinating

17:11

the way you girls , even though you didn't live

17:13

in the same state , you weren't near each

17:15

other After summer camp , you

17:18

were like now we still need to keep in touch with

17:20

each other and you wrote good old fashioned

17:22

snail mail to each other , as

17:24

well as connecting on the

17:27

internet , which was really new

17:30

way . Back then , when AOL was young

17:32

, it was really new . In fact , it's

17:34

funny that she said what you did about the chat

17:37

when my kid was two

17:39

, so this was still in the late 1990s

17:43

. That's the first time I got online and

17:45

it was dial up . You girls remember dial

17:47

up .

17:48

Yeah .

17:49

And you would be so excited when it would

17:51

make the final connection and you knew

17:53

that you could talk to somebody . And

17:55

we used to have a Friday night chat

17:57

that was just for HLHS parents

18:00

, and so while a lot of my friends were

18:02

off because I live in Texas , a lot

18:04

of them were off watching football

18:06

games at the local high school I

18:08

was sitting at my computer talking to

18:10

friends around the world about their kids with

18:12

hypoplasic left heart syndrome . So

18:15

were you in a chat with other

18:17

people or were you in a private chat with

18:19

just the two of you , just

18:21

each other ?

18:22

We did in . I don't

18:24

recall ever meeting anyone else through

18:26

the internet that way . Also , I don't recall

18:28

ever looking up information about anything

18:31

the way people , I think , can look up information

18:33

. Now I think it's good , but I think meeting

18:35

people , whether it's in a chat or in real life

18:37

, and connecting with them is a really important piece

18:40

, beyond just understanding the medical

18:42

background and saying that can happen to people . It's

18:44

different when you can talk to somebody who may be at this experience

18:47

or has done a couple steps ahead of you in

18:49

their journey , their cardiac journey , whatever

18:51

journey . It is , because different

18:54

than reading about something on WebMD

18:57

and not really

18:59

understanding how it's going to feel or

19:01

if you're experiencing that or not .

19:03

Anna Jaworski has written several books to

19:05

empower the congenital heart defect

19:08

, or CHD , community . These

19:10

books can be found at amazoncom

19:12

or at her website , wwwbabyheartspresscom

19:17

. Her best seller is the Heart

19:19

of a Mother , an anthology of stories

19:21

written by women for women in the CHD

19:23

community , and as other books , my

19:25

Brother Needs an Operation , the Heart of

19:27

a Father and Hypoplastic Left Heart

19:29

Syndrome . A handbook for parents will

19:32

help you understand that you are not

19:34

alone . Visit babyheartspresscom

19:37

to find out more .

19:46

Heart to Heart with Anna is a presentation of Hearts

19:48

Unite the Globe and is part of the Hugg

19:50

Podcast Network . Hearts

19:52

Unite the Globe is a nonprofit organization

19:54

devoted to providing resources to the congenital

19:56

heart defect community to uplift , empower

19:59

and enrich the lives of our community members

20:01

. If you would like access to free

20:03

resources pertaining to the CHD community

20:06

, please visit our website at wwwcongenitalheartdefectscom

20:10

for information about CHD , the

20:13

hospitals that treat children with CHD , summer

20:16

camps for CHD survivors and much

20:18

, much more .

20:22

Now we have Emily and Mabel in the

20:24

studio with me . We're all together and

20:27

I want to start by asking each

20:29

of you to share a special memory with

20:32

me that you have of each other . And

20:34

Mabel , I'd like to start with you Special

20:36

memory is a lot , I guess

20:38

I would say .

20:41

I lived abroad for a semester

20:43

in college and Emily was one of the

20:45

couple of friends who came over to visit me

20:47

and I think we were 20 or 21

20:49

at the time . We were in Italy , and

20:51

who would have thought that little

20:54

girls who met nine , 10 years old , 10

20:56

years later , around her they'd glass as a wine in Italy

20:59

, where I'm walking around , roll and

21:01

become so far ourselves , physically

21:03

as well , to be able to go abroad , live abroad

21:05

, do these things . And then bring

21:07

these friends together . I cherish that a

21:09

lot . That was a great , really special

21:12

trip , a really wonderful part of my abroad

21:14

experience . I'm going to share it with her .

21:17

Oh , I love that story . That is

21:19

so amazing and that was not in the book

21:21

, so I just learned something new . That

21:23

was amazing . Ok

21:26

, what about you ? Emily Joris mentioned

21:28

memory with me of being with

21:30

Maple .

21:31

Sure , that's a really hard one because all

21:33

my great memories are with her . But

21:36

I think , as you mentioned , we

21:39

used to visit each other once a year . So

21:41

we went to the mall one day and we

21:43

used to love to watch Friends the TV show

21:45

together and we loved the song

21:47

lyrics and everything in the beginning , for

21:49

I'll Be there For you . And on

21:51

our shopping trip we found a best

21:53

friend Forever Necklace in the shape of a heart

21:55

that said I'll be there for you . That's

21:58

split in half so we could each keep one

22:00

half and it was perfect , not just because

22:02

of the Friends TV show connection , but our

22:04

deep connection . I don't know .

22:06

I love that . I can totally imagine

22:09

the two of you girls being excited

22:11

finding the necklace

22:14

, and then each of you will be

22:16

having half of it . So do you still

22:18

have your necklace ?

22:19

Yeah sure yeah , they get

22:21

it right .

22:23

Oh my gosh , that's so awesome . I

22:26

just love that . That's wonderful . Ok

22:29

, ladies , I'd love for you both to share with me

22:31

a piece of advice that you have for

22:33

others who are growing up with the congenital

22:35

heart defect . And , Emily , I'll start

22:38

with you this time .

22:40

I'd say you're not alone , and

22:42

the best advice I ever got

22:44

was actually given to me from Mabel only

22:46

a few years ago . She told

22:48

me I've learned not to get mad at

22:50

what my body can't do and be thankful

22:52

what it can do . Start

22:54

where you can and grow what you can . I

22:57

think it's really easy to get mad and frustrated

22:59

at everything that makes us different , but

23:02

you can appreciate the things you can

23:04

do , because they won't always be there in your regret

23:06

not trying your best when you had the ability

23:08

. Oh , I love that .

23:10

That's excellent advice , mabel . Now did

23:12

she steal the thunder from you , or do you have other

23:14

advice ? Literally , I swallow

23:16

thunder .

23:18

I don't wear a vice , don't worry . My

23:20

advice is to be your own best advocate . Owning

23:23

your condition is

23:25

so important . Be your own

23:27

champion . Pick up , ask question

23:30

. I ask so many questions , I

23:32

ask the same question in different ways and I say

23:34

back what I think I'm understanding

23:37

because I want to be completely

23:39

in the know of my options

23:41

, what I'm dealing with , what I'm thinking . It may be scary

23:44

, but knowledge is power .

23:47

Oh , I love that . That is so true

23:49

, and I think that's another

23:51

reason why Emily writing this

23:53

book is so important , because it

23:55

provides more knowledge and , even

23:58

though what she's gone through may not be what

24:00

the reader is going through , they can

24:02

see the questions that she asks and the struggles

24:04

that she went through . They'll learn about

24:06

some of the jargon if they're a heart patient

24:09

or if they have problems with their eyes or some of

24:11

the other problems that Emily had that

24:13

she talked about in her book , because

24:15

her book is about chronic illness , it's not just

24:17

about her heart condition , and

24:20

I think you're right . Learning to be your own best

24:22

advocate , learning to ask questions

24:24

that is so critical . I'm curious

24:27

do you girls usually bring somebody with

24:29

you to your medical appointments so you

24:31

have that other set of ears to hear

24:33

what's being said ?

24:34

Since I've been an adult , as

24:37

in going to college , no , my parents stopped

24:39

coming with me . But when

24:41

I was scheduled for the surgery , I said you're

24:43

coming to meet the surgeon with me . I

24:46

didn't say it was a question , a question

24:48

. And so my friends would say , yep , check up

24:50

. I had them come as well , and my sister

24:52

. But other than that , routine checkups

24:55

and ECHOs , EKG type

24:57

tests , they don't come , I go alone .

25:00

I agree , I have the same experience . I

25:02

feel confident managing as much as I

25:04

can . If there's something going on

25:06

, I want another person in the room

25:08

to make sure that

25:10

everything is being captured , so

25:12

it can be overwhelming . And if a

25:14

home and you're like what , I don't remember

25:16

all of this stuff and having someone else there to

25:18

process it , that's always helpful , those

25:20

things .

25:21

It helps me to hear you ladies say

25:23

that , because my own heart warrior turned

25:26

18 and said Mom , you don't need to come

25:28

with me anymore . You've been preparing

25:30

me all my life for this and I felt

25:32

hurt . I was like , wait , I'm

25:34

the record keeper , wait , I'm

25:36

the one who has been into every single

25:39

appointment , and listening

25:41

to you ladies explain it the way that you

25:43

just did that you did it , managing it

25:45

, but that you know when to reach out for

25:47

help , that makes me feel better

25:49

. So hopefully my heart warrior will

25:51

reach out to me if she needs

25:53

me . But she has been navigating

25:56

the waters really well herself . I

25:58

think it's really impressive how

26:00

you all grow up with these

26:02

really complicated conditions and

26:05

you do go to those appointments

26:07

alone .

26:08

I think at the testament that you , as a parent

26:10

and other heart warrior or parents , that's what you

26:12

want . You want your child to

26:14

be able to manage

26:17

the condition and to feel confident and

26:19

secure and empowered and

26:22

know you're there .

26:24

Thank you that we're there if they need

26:26

us . That's really important . But thank you

26:28

for saying that because you're right , and one

26:30

of the things that you know once you become a parent

26:32

is that your child

26:35

will probably hopefully outlive

26:37

you If you haven't prepared

26:39

them for how to take care of themselves , what's

26:42

going to happen when you're gone . So

26:44

you definitely want them to be empowered and

26:46

able to take care of themselves . I

26:49

can't believe our time is almost up . This

26:51

has gone by so fast . You girls

26:53

are so much fun to talk to . But before

26:55

we close , let's talk about

26:57

the importance of having books like Emily's

26:59

available to read . Mabel , can

27:02

you tell me what it means to you to

27:04

have Emily's

27:07

book launching today

27:09

? Today is the day that it is available

27:11

to the whole wide world .

27:13

I'm very proud of her . I think

27:15

twofold , I think . For me it's like a snapshot

27:18

of my histories in there too . But

27:20

having a book like this if you have a

27:22

friend on call , in a way you can pick

27:24

it up and you can just have

27:26

it in your pocket when you need it . We

27:28

know that the community is important , that educating

27:30

yourself is important and pushing yourself in the right

27:33

ways is important , but sometimes you just want to have something

27:35

there at hand quickly to

27:37

refer to , and I think you

27:39

find your passages , you find the chapters that relate

27:42

to you , you find the things that stick with you and it always

27:45

is so read it , I can grab it

27:47

.

27:47

I love that you always have a friend right

27:49

there with you . How sweet is that ? Ok

27:52

, what about you , emily ? Tell us

27:54

what it's meant for you to write and publish

27:56

your book .

27:57

So , as I'm motivated , when I was writing I

27:59

kept telling myself it's not just my book

28:01

, it's Mabel's too , because , as

28:03

you can tell , I'm a bit timid and she's really

28:05

brave . So I thought , be brave

28:07

like Mabel and share . But anyone , not

28:10

just me . She will tell a stranger and

28:12

I would never , unless I had to , and

28:14

she's always been really brave about scars

28:16

. She doesn't hide them and I'm not very

28:18

brave . So I just kept saying

28:21

push myself , don't give up . I

28:23

want to help people , and young

28:25

people need something like this , because I

28:28

always wanted to hear about somebody who was older

28:30

than me , who had my condition in thriving , because

28:32

I always heard about other people with more common

28:34

conditions . So I just hope

28:36

this can help even people who don't have alkepa

28:38

, so you can grow up and get older

28:41

and go through ups and downs and thrives

28:43

, and my biggest wish is

28:45

that this helps people .

28:48

Yeah , so you can meet your friend in Paris

28:50

and have a glass of wine together . How awesome

28:52

is that ? I just love

28:54

it .

28:55

We did a lot of class here .

28:57

What's that we were ?

28:58

looking for her . We met up

29:00

in London last year . It

29:02

was fun . We had a great time .

29:05

What did you do in London ? Did you

29:07

take in any plays ?

29:10

No , maybe I had some fancy jobs . It was a business

29:12

trip for her and I was there on vacation

29:14

, so we met for a very nice Italian

29:17

fancy dinner and we

29:19

didn't have time for shopping or the sites because

29:21

she's so busy , but it was great . We went to

29:23

dinner and we'd never done anything so

29:25

grown up like that together in a way , cause

29:28

usually we just go on a little vacation somewhere

29:30

nearby to our houses , never overseas

29:32

.

29:33

Oh , my goodness , that sounds like so much

29:35

fun . I'm so glad that

29:37

you girls could share . Really

29:39

, it is a joint story . You

29:41

shared both of your stories with the world

29:44

and Mabel I imagine

29:46

Emily asked you if

29:48

it was okay with you or

29:50

her to share as much as she did , because

29:52

she shared text messages and conversations

29:56

, and I want to thank you for

29:58

opening up and allowing her to share

30:00

that with the world .

30:01

Yeah , of course , anything from Emily .

30:06

I just love you too . I wish I could give you girls a

30:08

big hug , because you're just so

30:10

wonderful and you have the

30:12

kind of friendship I think everybody

30:14

wishes they had . Everybody

30:16

needs a best friend like the two of you have

30:18

one another .

30:21

Yep , it's true , very lucky .

30:23

Thank you so much for coming

30:25

on a program with me today

30:27

, Emily . This has been so much fun

30:30

. Let's tell everybody where they can find

30:32

your book .

30:33

The master website is BabyHeartsFriends

30:35

and his website , so you can go there to

30:37

click on links to buy it in paperback

30:39

, audiobook or ebook , and it will direct you

30:42

to the retailer of your choice .

30:44

Isn't that awesome . I'm so impressed

30:47

that you have it available in audiobook

30:49

, ebook and a printed book

30:51

. That is just amazing . Did

30:53

you do the narration yourself ?

30:56

No , I hate reading aloud no

31:00

.

31:01

OK , so you found a voice actor

31:04

to do the narration for you .

31:06

Yes , she's very good . I hope everyone

31:08

enjoys it . If you prefer audiobook , and

31:11

you just have to imagine Mabel's

31:13

voice when you hear her talking in the story

31:15

.

31:17

Yeah , now that we've all heard Mabel , we know what she sounds

31:19

like . But that is wonderful

31:22

. So I wish you the best of life . Friends

31:24

, Do check it out . I'll put a link in

31:26

the show notes . It is BabyHeartsPresscom

31:29

. Emily has her own page . It'll

31:31

take you directly to

31:34

the type of book you want to buy . So

31:36

thank you , Mabel , for coming

31:38

on this show today . This has been so much fun

31:41

. Thank you for the pleasure . Thanks

31:44

, Emily . I have a feeling we're going to be hearing

31:46

more from you in the future . Thank

31:48

you , and thank you for all the opportunities you've given

31:50

me . I'm so excited

31:52

about this , friends . That does conclude this

31:54

episode of Heart to Heart with Anna . Thanks

31:57

for listening today . I hope you found this

31:59

program as enjoyable as I

32:01

did . It has been so much fun talking

32:03

to these two best friends

32:05

. If you liked the episode , please

32:07

consider becoming a patron to support

32:09

our program . And remember my friends

32:12

, you are not alone .

32:18

Thank you again for joining us this week . We

32:20

hope you have become inspired and empowered

32:22

to become an advocate for the congenital

32:24

heart community . Heart to Heart with Anna

32:26

, with your host , anna Jaworski , can be

32:28

heard at any time , wherever you get your

32:30

podcasts . A new episode is released

32:32

every Tuesday from noon Eastern time

32:34

. No-transcript

32:38

.