0:00

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0:04

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0:09

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0:23

Okay. So Gina, I've just got a couple questions.

0:25

We're just going to get into it. Is that okay?

0:27

Yeah, totally.

0:28

I'm

0:28

Nora

0:28

McInerney

0:28

and

0:28

this

0:28

is

0:28

Terrible

0:28

Thanks

0:28

For

0:28

Asking

0:28

and

0:28

that

0:28

was

0:35

Gina. And when we get into it, we're going to be continuing the conversation that we've been having about Care with Gina story is a story about a lot of complicated emotions about the long tail effects of being thrust into a caregiver role.

0:51

When you're still a person who needs a lot of care, a child, but this complicated story starts in a really simple place.

1:01

When Gina's parents met and fell in love

1:11

They were a summer flying.

1:12

It was like maybe 1969, 1970 Vietnam war was going on.

1:18

I think there was like a lot of looking for a better life, like, you know, like wanting something good and they dated, you know, over that summer.

1:28

And then they were married. By like the day after Christmas, that same year.

1:31

So my sense is that they were kind of idealists.

1:35

Like they were like looking for some sort of a happily ever after.

1:40

And for awhile Gina's parents Found

1:43

it. My mom was a homemaker and my dad was kind of a rising star and the computer science world, who is an academic, who he was teaching at Georgia tech in Atlanta, which is where I grew up.

1:57

And so early memories are that, you know, my mom cooked and was crafty and, you know, volunteered with the PTA.

2:05

My mom really loved us, so she loves to bake.

2:09

She is a beautiful woman and my dad was very intellectual.

2:15

Like I remember him, READING like not totally age appropriate books to me when I was young.

2:21

Like you read Alison Wonderland to me at an age when I didn't fully understand what was going on.

2:27

There's so much in that book that I didn't understand, but I loved the fact that he would read that to me.

2:32

And he would sit down and explain to me how telephones work.

2:34

And he liked teaching me about prime numbers and stuff like that at a very young age.

2:40

I think he just really enjoyed sharing that aspect of himself with me.

2:45

He liked kind of dissecting things and thinking about things and asking questions.

2:49

And, and that's something that I've carried with me into adulthood.

2:52

He kind of taught me how to dig deep and think about stuff that you might not otherwise think about.

2:58

Gina

2:58

was

2:58

the

2:58

second

2:58

of

2:58

three

3:02

children. Her older brother is named Allen.

3:05

He just was like a sweet, sweet kid.

3:09

Like he loved playing with matchbox cars and he would align them up.

3:14

We would watch movies a lot together.

3:16

Like he loves watching Lassie and old yeller and, you know, he could watch stuff like that.

3:22

If it involves a kid and the dog, he could watch a movie, you know, five times in a row.

3:28

My mom let him every single time he saw it.

3:30

He would laugh at every part. Like it was the first time he ever heard it or ever saw it.

3:34

And same with music. You know, at some point in our childhood, somebody gave him like one of those yellow Sony Walkman and a bunch of tapes.

3:42

And he would walk around the house with like headphones on and playing his tapes and singing in his very loud, very slurred speech.

3:52

And

3:52

that

3:52

was

3:52

like

3:52

the

3:52

happiest

3:52

he

3:52

could

3:52

ever

3:57

be.

4:03

She loved country music being Crosby.

4:05

He loved Christmas music all year round.

4:08

It was just Gina.

4:10

And Alan, until there a little brother, Andrew was born, Andrew came along and I felt like almost like he was my baby from the beginning.

4:20

And like, I think I recognized from a young age that he was like my ally and my playmate.

4:26

He was, you know, a playmate that I interacted with.

4:31

Like he was very imaginative and we do the things that kids do where you like line up all your stuffed animals and teach them school.

4:39

Or we would do these like toy parades down the hallway.

4:44

And like throughout the whole house a where we are just, just like line up every single toy we own.

4:49

And then just like March them.

4:51

Like, I don't know if it was a production Gina's relationships with Andrew and with Alan were different because Allen and Andrew were very different.

5:01

I was aware from a very, very young age that I can do things that Alan couldn't.

5:08

I was three years younger than him.

5:09

He and I kind of learned how to walk around the same time he could talk, but his speech was really slurred.

5:16

And so I knew from a very young age that like a lot of people didn't understand what he was saying, but I did, like, I kind of interpreted for him a lot, especially in public.

5:25

So I think there was an awareness on that level.

5:28

Like he's older than me, but I think I always felt older than him.

5:32

Like I knew that he had a lot of medical stuff that was very mysterious.

5:38

Like he had some seizures and would have to be rushed to the hospital.

5:41

So I, I was very aware that like he needed a lot and there was a something wrong.

5:47

I would say that I probably could say from a very young age that there is something wrong with Alan.

5:52

But in terms of like knowing that what that was, or, you know, having sort of context for it, it wasn't until much later, It's

6:02

not just, Gina, who's missing context.

6:04

It's her parents to it's Allen's doctors because it was the 1980s.

6:08

And nobody really knew what made Alan different.

6:14

The way I was told is that he was born breech with the cord wrapped around his neck.

6:21

And so my mom had always said that he was a really floppy baby.

6:25

Like, that's the word that she used. She was really floppy when he was born and he didn't cry very much.

6:30

And so at the time the doctors all knew something was wrong.

6:35

Like I think almost immediately, if not immediately, like they knew something was going on, but I think they thought it had to do with like, maybe he lost oxygen.

6:45

Like he had some brain damage, but there wasn't like any sort of telltale characteristics.

6:50

Like, you know, like somebody who has down syndrome, you know, like there's characteristics that might point you to something like that.

6:56

There was none of that. So like my earliest memories, doctors would use the term mentally retarded or brain damage.

7:02

Like that was the language that they used.

7:04

That's what teachers would say.

7:06

And so that was the only like context we had is like, Oh, he has brain damage.

7:10

Like I think people would say he's handicapped or he's disabled.

7:13

But I think part of what was really hard for my parents' is that there wasn't a diagnosis and there is no book to look out to say, Oh, this is what you can expect from him developmentally.

7:24

You know, this is, these are his milestones.

7:27

There was none of that.

7:29

It was just all, I think probably felt like a huge mystery to them.

7:37

That's how people talked about Allen around Gina when they were kids.

7:40

Not all of those things are things we'd say today.

7:43

Like the R word.

7:45

We don't say that, but Alan was different.

7:48

So in the meantime, Gina and her family are just doing their best living in suburban Atlanta.

7:54

And we're talking about the house layout because the house layout that Gina grew up in is important to this story.

8:02

I promise.

8:04

So you walk in the front door and there was like a formal living room, which I'm not sure how many people have any more, but there was like the room that the kids weren't allowed in, you know, with the like Ethan Allen furniture and the cream colored carpet that we weren't really supposed to walk on and a huge front picture window.

8:23

And then to the left, there's like four stairs going up to my bedroom, the master bedroom.

8:30

And then my younger brother, Andrew was up on that level too.

8:34

And there was a bathroom that the kids all shared and then the master had its own.

8:39

And then, you know, coming in the front door, if you didn't go upstairs, then you walked in.

8:45

And it was like a den, which had like the orange shag carpet.

8:48

It was like the room that you can hang out. And we had a color TV that was like, in one of those, I don't even know what you call it.

8:56

It's like not a Media cabinet. Cause that wasn't a thing yet.

8:59

But Its like the TV is furniture.

9:01

Yes, God that's so fancy.

9:04

I wanted so bad. It's like, Oh you were describing that kind of house wear as a kid, I'd walk in and be like, Oh you are rich.

9:11

Like the TV is furniture.

9:12

You've got a split level, you've got two living rooms.

9:17

Like what don't you have the split level house, a representation of the suburban American dream for listeners who don't know a split level house means you walk in and there's a little platform mentoree, you can go up or down to a lower level.

9:35

That's not quite a basement.

9:38

You're always aware of what is going on in the house.

9:39

I just felt like you could always hear everything that was happening.

9:43

And so if my mom was not doing well, I could hear it.

9:47

If my parents were fighting, you know, before my dad left, like everybody in the house, there was no way that they could go into like, you know, protect us from that.

9:59

And even though her parent's marriage has started out with so much hope, there was a lot to overhear Gina's mom struggles with severe depression that wasn't diagnosed or treated at the time.

10:13

And what I observed from a young age is just that she would be fine, you know, she'd bake or play music, you know, she'd be, I think, pretty happy.

10:25

And then she would sink into kind of a dark place.

10:29

You know, my dad would leave for work.

10:31

He was working long hours and really, really ambitious.

10:34

And she would just kind of stay in her pajamas or stay in bed and kind of leave my brothers and I to kind of fend for ourselves.

10:41

And then, you know, shortly before my dad was due home, she would suddenly like come out of the bedroom, like fully made up and ready for the day, you know?

10:50

And I think it felt very confusing and very overwhelming.

10:55

Like now I'm thinking like, Oh, she was like really just trying to keep shit together and not maybe let my dad know how much she was struggling.

11:08

But mom was struggling with her depression with raising Allen and mom and dad also fought a lot.

11:13

And by the time Gina was five, they were separated.

11:22

I remember being like the kid with the divorced parents.

11:26

I remember that being part of the vocabulary in kindergarten.

11:30

Like

11:30

the

11:30

first

11:30

memory

11:30

I

11:30

have

11:30

of

11:30

like

11:30

really

11:34

understanding. I just remember being in my bedroom.

11:36

I was supposed to be in bed or I wasn't in maybe, but I wasn't asleep.

11:40

And I just remember hearing this noise and coming like kind of creeping down the hallway and sitting at the base of the stairs where I could see all the way across into the kitchen.

11:52

And mom was Just

11:55

in a heap on the linoleum floor and she was sobbing and she was kind of like the sound that I heard was her sobbing.

12:03

And I heard her kind of a murmur into herself that she just couldn't do it anymore.

12:08

I just, I just want to die.

12:09

I can't do this just a lot of like over and over again.

12:14

And I just, I can't do that. So I just want to die. I just want to die.

12:16

And I think as a six year old, like I think I was terrified by that.

12:22

I think I thought maybe if she said she was going to die, if she wanted to die, she was going to melt into the linoleum floor and disappear, you know, like I thought that's she was going to win that to happen.

12:33

And that means she was going to die.

12:34

And I think on some level I also knew that there wasn't room for me to feel that like to feel terror or to feel sadness about that.

12:45

So I think for me, that kind of feels like the point at which I was like, okay, well it's, it's up to me.

12:53

Or you know, like if she can't do it, then I guess I'll do it.

12:56

We're

12:56

going

12:56

to

12:56

take

12:56

a

12:56

quick

13:04

break.

13:35

We get support from Talkspace. I just realized we're coming up on like, I mean one official year of whatever this is that we're going through.

13:41

We had a meeting with the whole TTFA team when we were like, everyone else just not feeling good, actually feeling very bad, actually feeling very overwhelmed and like they are, they're hitting a wall.

13:51

I think that's pretty much everybody, which is why it is so important to make sure that you are taking care of yourself, taking care of her feelings, guess who can help you do that?

14:01

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14:02

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14:35

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15:19

back and Gina has overheard her mother weeping saying she just can't do it anymore.

15:25

And Gina decides, okay, then I'll do it.

15:32

It meant, you know, trying to keep my brothers out of her hair.

15:36

Like I feel like out of her hair was something that she always said, like, I need your kids out of my hair, but I feel like I kept my brothers occupied and entertained.

15:44

I cooked scrambled eggs for dinner.

15:48

I helped bathe Allan.

15:50

I tucked my brothers in and kiss them goodnight.

15:53

I read to them.

15:55

I mean, I think in the beginning, like I feel like I probably enjoyed it a little bit of it.

16:00

Like it was playing house. Like I can, I can do some of these things.

16:03

I can take care of things.

16:04

And then as I got older, the burden of it really, really started to take over.

16:12

I

16:12

have

16:12

this

16:12

one

16:12

memory

16:12

like

16:12

around

16:12

age

16:12

eight,

16:12

I

16:12

think

16:12

I

16:12

was,

16:12

I

16:12

was

16:12

in

16:12

girl

16:12

Scouts

16:12

at

16:12

school

16:12

and

16:12

my

16:12

girl

16:12

scout

16:12

troop

16:12

had

16:12

this

16:12

service

16:12

project

16:12

where

16:12

we

16:12

went

16:12

over

16:12

to

16:12

this

16:12

elderly

16:12

woman's

16:12

house

16:12

and

16:12

we

16:12

were

16:12

gonna

16:12

clean

16:12

her

16:12

whole

16:12

house

16:12

for

16:12

her

16:12

and

16:12

eight

16:12

years

16:12

old,

16:12

I

16:12

think

16:12

it

16:12

was

16:12

maybe

16:12

in

16:12

second

16:35

grade. And so me and these other eight year old girls are like super excited to help.

16:39

And the adults are trying to teach us how to use a vacuum cleaner, how to spray pledge on to, you know, a coffee table and dust and all that kind of stuff.

16:49

And I just remember, like, I already knew how to do that.

16:51

Like I was like, Oh, I know, like I can show you how to vacuum.

16:56

I know how to turn it on. I know how to do this.

16:58

So I know how to dust the blinds.

16:59

So at age eight, I already was doing those things too, to ease the burden on my mom.

17:08

This is called parentification. When a child is forced into the role of parent would usually take, and it's also a serious loss.

17:16

This is Gina losing a significant part of her childhood, which she spends taking care of other people, not just by completing tasks, but by being good at making sure that she herself does not demonstrate any personal needs.

17:35

I also was really good student, I think because I was aware of at a very young age that I needed to almost be the opposite of Allen.

17:42

You know, Allen had severe intellectual disability and severe developmental disabilities.

17:48

And So

17:50

I think in a lot of ways, whether I was aware of it or not like my job was to be the opposite of him.

17:58

Like if he had special needs, I had to have no needs.

18:00

If he was very dependent on people, then I had to be very independent.

18:07

My mom actually like used to tell this story about the first time she dropped me off for kindergarten.

18:12

There were so many kids that were like clinging to their parents' legs and like, you know, didn't want their parents to leave them there.

18:20

And I just felt so like scared about the whole thing.

18:22

And my mom was like, you know, you just walked right in.

18:26

And he turned around and he waved and you said, all right, see you later.

18:28

So I think like school was definitely a refuge for me.

18:31

And it was also like my way to be easy, you know?

18:35

Like they didn't have to worry about me cause I was going to do really, really well.

18:40

But Gina like, all of us can't just decide to not have needs.

18:46

Instead. She just learned to meet them, to bypass them, to push them to the very back burner.

18:51

She's just a kid, but she was acting like a partner to her mother and a parent too, her little brother in her big brother.

18:59

And you heard about Alan, he is so sweet, but then he hits puberty When

19:12

he hit puberty. His behavior drastically changed.

19:17

You know, now, today we know through genetic testing that he has something called Prader Willi syndrome back then, we didn't know, we didn't have any context for it, but one of the hallmarks of Prader Willi is, you know, violent mood swings, obsessive behavior.

19:33

And then this insatiable appetite Prader Willi affects chromosome 15.

19:40

And, and it affects you, you know, the pituitary gland, like a lot of hormonal type stuff.

19:45

So we actually know now that it's pretty common that people with Prader Willi when they get to puberty start having some huge behavior problems.

19:52

And so what that looks like for Alan was that he was always hungry and my mom, you know, it was a single mom.

19:59

We didn't always have a lot of food in the house, so that was problematic.

20:02

So he would like hunt for food at a trash.

20:05

He would try to eat toothpaste or, you know, sugar or spices from the cabinet.

20:11

And then, because I was in charge, if I tried to stop him, he would just become very violent.

20:19

You know, if I told him he couldn't eat from the trash, he might have, you know, grabbed me from the hair and like throwing me down on the ground or punched me or slammed me into a wall.

20:30

There was, you know, one time in the kitchen that he actually grabbed the steak knife and tried to stab me with it.

20:38

I was able to move out of the way, but it was almost like, like when you think of somebody who was abusive and, and there was a maliciousness behind It,

20:48

or like a premeditation or, you know, like it wasn't like, I think even when I was a kid, I knew he didn't want to hurt me.

20:54

Like I knew that he was not in control of his body.

20:57

I was terrified, but I also, like, I loved him so much and I wanted to protect him so much that I was like, I wanted to save him from himself.

21:07

So like, I wasn't going to stop, you know, trying to keep him from eating from the trail.

21:12

Like I didn't want him to eat from the trash. So I was going to keep telling him that he couldn't do that, that it wasn't healthy or safe to do that.

21:17

But then I would suffer the consequences of him, you know, lashing out at me or, or kicking her, punching me in response.

21:25

And then often what would happen is he'd lash out.

21:29

Like it was a very, almost involuntary reaction that he had.

21:34

And then he would see me either bleeding or crying and then he would just, he would start crying and he'd be like, Oh, you know, I not mean to, you know, like he felt horrible.

21:44

Like it was not what he wanted. He just wanted the food.

21:52

How much of your childhood behaviors, your childhood thoughts and feelings were a response to being Allen's a little sister.

22:04

I mean, I think almost all of it.

22:06

So when I was born three years later, it was an emergency C-section.

22:12

Even though there was nothing unusual about the pregnancy.

22:15

And I was like put in the NICU for like a week, even though I was like almost nine pounds and healthy, like, you know, my mom's said that the nurses loved having me there because they could actually like, hold me.

22:27

I wasn't fragile. And at some point they kind of pronounced me as quote, unquote normal, you know, like they just kind of were like, Oh, this one's going to be okay.

22:37

And I kind of feel like that was my destiny from that point, you know?

22:42

I mean, I just kinda feel like, Oh, like she was going to be okay.

22:45

And then it was like, I had to be okay.

22:51

Dad lived out of town at this point.

22:53

He didn't really know about the day to day of his kids' lives.

22:56

And mom, I

23:00

think she was living in fear, like, you know, in public, she presented as being really well put together.

23:06

She was kind of a perfectionist.

23:07

She was very adamant that I never tell anybody about what things are like at home.

23:15

Like she didn't want my, my dad lived out of state most of my childhood.

23:18

And so we saw him occasionally, but she like didn't want me to tell him what was happening.

23:24

There was this paradox because I feel like she was overburdened with her role as a single mom in parenting, in a high needs kids.

23:33

And she would say that she wanted to die because she couldn't take it anymore.

23:36

She didn't want to have kids anymore.

23:38

But then she also had this fear that my dad would find out and that he would take us away from her.

23:48

It's a lot. And Gina nose.

23:49

It's a lot, especially when she gets to high school, but there's nothing she can do about it.

23:55

Alan needs her, Andrew needs, her mom needs her butt.

23:58

The more time Gina spends with friends at their homes, the more the unfairness of our own situation is highlighted.

24:08

I was watching my friends have experiences in that I wasn't having, you know, like they could go out on the weekends because they didn't have people to take care of it at home or, or they didn't have to work to help pay the bills at home and stuff like that.

24:22

So I think my awareness of like, Oh, this is not the situation I want to be in it anymore was growing.

24:29

But then the other thing that I was happening is I was hanging out with friends more.

24:32

And I think my friends saw things, you know, they, they would see Alan's violence.

24:36

They would see bruises on my body.

24:40

You know, I, I don't remember how much I confided in them.

24:43

I do think I had a couple of friends that I told some things too, but I was afraid if I told too much that my mom would kill herself.

24:49

So I always felt like I was walking a line, like, but at some point I think my friends maybe talked to one of my teachers.

24:58

The school counseling office knew me because there would be days that I would be a lead getting ready for school.

25:09

And my mom would be on her bathroom floor saying that she wanted to die, but I would worry, like if she doesn't get up, she's not going to go to work.

25:18

And she was going to get fired. Or like, I just was worried that she would not be alive when I got home from school.

25:23

And so I developed this routine where I would go ahead and get myself ready for school.

25:30

I'll make sure that my brothers got out of the door to school.

25:33

Alan went to a special needs school.

25:34

And then I would show up at my high school and I would duck into the counseling office and call one of my mom's friend's and say, Hey, you, can you take her out to lunch today?

25:46

Like she was having a bad day. Can you check on her?

25:49

And then I would go about my day and you know, I'd come home and she'd be alive.

25:54

So there was that.

25:57

And then, you know, I came to school one day and then the school counselor said, Hey, your teachers and friends are worried about you.

26:02

If there was a County social worker who made the rounds and she was like, I want you to sit down and talk with her.

26:07

And so I had this meeting with the County social worker and she, you know, asked, she asked me if I had any bruises on my body and I showed her one bruise on my back.

26:21

I didn't show her, you know, three other bruises that I had at this point.

26:27

I think I was maybe 15.

26:28

So we just kind of sat down and talked and she asks me about Allen's violence.

26:31

She asked me, you know, do I have a dad?

26:34

Where is he?

26:35

What of my day is look like, am I getting enough to eat?

26:38

You know, just kind of, I guess I don't know what all of the typical questions would be, but I just remember she was Asking stuff along those lines.

26:45

And then at some point she said, have you ever been to the doctor for your injuries?

26:50

And I said, no.

26:52

And she was like, you've never been to the emergency room when I said no.

26:54

And she was like, and you have a dad.

26:57

And it was like, Oh yeah, you know, he lives in another state, but yes.

27:02

And so at some point you just kinda like put her pen down and she was like, I think you need to go live with your dad.

27:08

Like, I think you need to get out of there.

27:10

Which to me didn't feel like an option.

27:12

Cause I felt like who was going to take care of my mom and Allen and Andrew, if I leave.

27:17

And also like, I kind of like to hear, like, I've got friends, I like school I'm doing really well in school.

27:21

So, you know, at that point I thought it was kind of case closed.

27:26

Like I certainly didn't tell the social worker, everything that was happening.

27:30

I didn't tell her about my mom's how bad her depression was.

27:33

I didn't tell her about all the, you know, the level of violence that Alan was capable of.

27:40

And you know, but you know, I think she also looked at me and said, saw a 15 year old who was almost out anyway and had a path.

27:50

So I thought that was the end of it.

27:53

But then sometime after that, my school mandated that I go to therapy, like go to like six sessions of therapy.

28:03

And I remember my mom getting notified about it and being furious.

28:07

She didn't want me to spill all of the secrets or to tell anybody how bad things were.

28:18

One of the biggest blessings of my life is the therapist that I was paired with the initial session.

28:25

It was like my mom and I, and my mom was like, I don't know what's going on with her.

28:28

You know, she seems really depressed.

28:32

Yes. Things are hard at home, but you know, she just was like, I don't know what's going on.

28:37

Maybe she's on drugs. I don't know.

28:38

And then I remember the therapist saying, okay, you know, why don't you step out and we'll start talking.

28:45

And I remember being really afraid, like, you know, whose side is a therapist on?

28:49

Like, what does she want to know?

28:51

And, and what would happen if I tell her things?

28:54

So I, I did not tell the therapist, everything, you know, we initially talked about school and what I wanted to study and did I want to go to college?

29:03

What kind of bands did I like to listen to?

29:05

Stuff like that? I think she was kind of was just trying to get to know me.

29:10

And then I would talk a little bit about Allen and it just kind of steadily opened up a little bit more and a little bit more, but she was the kind of therapist who could see people, you know, like really intuitive.

29:23

I don't know what it must have looked like for me to sit across from her.

29:28

But like, I feel like she got it.

29:30

Like without me having to say much, there was one session towards the end where, you know, she kind of looked at me and she said, your mom thinks you're exaggerating.

29:40

Your mom thinks you're exaggerating how bad things are at home.

29:42

And I was like, I'm not.

29:45

And like, in my mind, I'm like, Oh, if you only knew, and I just said, I'm not a and the therapists that I know, she was like, I actually think things are harder than what you're telling me.

29:55

She's like, I think your mom was really depressed.

29:57

I think, you know, you're taking care of everyone and no one's taking care of you.

30:01

And she said, don't you want somebody to take care of you?

30:05

And I just started bawling.

30:10

Like I felt like that's all I wanted.

30:12

Like I wanted to like climb into the therapist's lap and just like, that's all I wanted.

30:17

I wanted somebody to see me and take care of me.

30:19

And that's not something that I got to have.

30:20

We're

30:20

going

30:20

to

30:20

take

30:20

a

30:20

quick

30:27

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30:37

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30:44

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30:47

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31:40

Why do you get deja VU? Why are you attracted to symmetrical faces?

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And why do you listen to songs and following you out?

31:45

I'm Dessa host of a new podcast, deeply human.

31:48

When you're cry, it can sometimes lead to help you irrigate your emotions.

31:51

You are attempting to induce deja VU through a virtual reality.

31:55

I'm finding out what we all want to know.

31:57

Why do you do what to do? Deeply

31:59

human, a BBC world service.

32:01

And American Public Media coproduction with iHeartMedia, listen on the iHeart radio app or wherever you get your podcasts.

32:08

I'm starting March 8th.

32:12

We're back in Gina school has sent her to a therapist and the therapist has asked Gina a life changing question.

32:20

Don't you want somebody to take care of you?

32:25

And yes, yes.

32:29

That is exactly what Gina wants, what she has always wanted.

32:36

It was something where she basically relinquished me of From

32:40

responsibility. Like I'm not the problem with a family, but at the things that are happening at home are not my fault.

32:45

And that was so free in to me.

32:47

But yet she also understood that my mom was hurting.

32:52

Yeah. I don't think my mom was intentionally trying to make me miserable, but my mom was coming from a place of just such deep pain that she was not mothering me.

33:00

And I think she understood that, you know, Allen's condition added a layer of complexity that no one could handle.

33:07

And like most mentally healthy people would be struggling with dealing with Allen's intense needs.

33:14

So yeah, I think the therapist got it.

33:17

But then I think she also understood that she needed to like plant some seeds and get me out of there.

33:24

And so like our last couple of sessions, she brought me college brochures and applications.

33:29

Like she knew that I didn't want to leave the state and, and live with my dad.

33:35

So she just kind of planted these seeds.

33:38

Like, what's your plan? Like, how are you going to take care of yourself?

33:40

Do you want to go to college someday? How are you going to get there?

33:43

And I think she made me believe that I can step away that it was okay for me to leave, because I think, you know, another element of this was that if I started to think about leaving home, then I equated that with my dad leaving, you know, like I, I felt like I'd be at abandoning the family in the same way that he did like, and I think that some of that came from my mom.

34:06

You know, like if I was spending too much time with friends, if I wanted to sleep over at someone else's house, she felt like I was abandoned and the family.

34:13

So I think I took a long time for me to understand that it was okay for me to leave that by leaving home, I wasn't hurting my family.

34:23

I was taking care of myself.

34:27

Even if these decisions are painful for her family, she is not doing it to hurt her family.

34:32

She's doing it to take care of herself.

34:34

And As, Gina makes these decisions, the small steps towards prioritising herself and her needs.

34:42

She was given a big, big opportunity.

34:45

She remembered something, a friend had said, one afternoon is they were hanging out in her.

34:50

Friend's finished basement.

34:51

This brand knew how hard things had been for Gina and said to her, Hey, you know, you can always just live here.

34:59

Gina had filed a way that conversation somewhere in her brain.

35:03

And one night things are really, really bad at home.

35:09

It's like, I just, I had reached a breaking point.

35:11

You know, my mom was screaming about something like she just was manic.

35:15

And like, she just felt like completely unhinged and Alan was out of control.

35:22

And I think in my mind it was almost like I had this kind of love and fear dynamic with my family.

35:30

I felt like the scale tipped to fear.

35:32

And I just like hit a point where I was like, okay, I got to go.

35:36

I got to go. And I laughed.

35:38

And you know, my friends and her mom and just kind of welcome to be in.

35:43

And there wasn't a lot of explaining I had to do.

35:47

My friend's mom did make me call my dad and tell him where I was.

35:54

'cause she felt like she didn't want to participate in something where my parents didn't know where I was.

36:00

I don't know if she just said she was like, let's just say, I need somebody to like, give me a green light here.

36:08

And so I called my dad and I didn't talk to him very much.

36:11

Like my dad, when I did see him, it was wonderful.

36:14

Like I loved my dad.

36:15

I wish I had more of him in my life, but he wasn't there.

36:19

He wasn't consistent. And so this was like a big phone call, like I had to call and like, let him know that I moved out and ask for his blessing for me to not have to go back home.

36:29

And I just remember it was like one of those calls where like your crying so hard that I don't know how he understood anything that I was saying, but I just said, I can't, I just, I can't do it anymore.

36:41

I just can't do it anymore.

36:42

And I don't feel like I said much beyond that.

36:44

Like I just was like, I had to get out.

36:46

I can't do it anymore. I just can't do it.

36:48

And he was like, okay. He's like, I understand.

36:53

It's not the same thing though. Gina as a kid, her dad, isn't an adult they're leaving.

36:58

It's not the same day that night Gina spending the night at her friend's house, knowing that she doesn't have to go back home in the morning.

37:09

She was like a mix. It was freeing. And it also was weird, like to be in a house where there's food in the refrigerator and I don't have to guard it from Alan, you know, over-eating and making himself sick there wasn't, it was a really quiet house.

37:27

And that was, I think initially kind of scary, like just very unfamiliar, like, Oh, it took a while.

37:34

Like I, you know, I lived there for, until I went off to college basically.

37:37

And it took a while for me to kind of like stop being so vigilant and to realize that like, you know, I didn't have to take care of my friend's mom.

37:47

I didn't have to take care of my friend.

37:49

Like she had her bedroom upstairs and I was in the basement.

37:51

And so like, we had this really wonderful, healthy boundary were like, we would hang out and maybe do homework together, but then I could like retire to my room or if she could retire to her room.

38:01

So I got to be my own person.

38:03

I got to come and go, you know, I had the same rules that she did, but her rules were a lot better than my rules had been at home.

38:09

And like, we were able to go to concerts together.

38:12

Like I feel like I started to like have glimpses of like, Oh, this is what TeamDom could be like, like we're going to a skosh shows at these little grungy cigarette, smoke filter music halls in downtown Atlanta.

38:26

And I just, part of me was like, Oh, this is great.

38:30

And a part of her is feeling guilty because Allen and Andrew still in That

38:36

house at school, Andrew will barely even look at her.

38:39

Alan, at least doesn't understand that she's left.

38:43

This is the both and of life.

38:47

And that by taking care of herself, Gina has vacated the role of caregiver for her, her siblings and her mother, Diane, a roll that was never supposed to be hers in the first place.

38:58

She didn't apply for it.

39:00

She didn't ask for it.

39:02

She was thrown into it at age six.

39:07

I felt like the more distance I gained from my family, the more I was moving towards the things I'd always feared.

39:13

You know, like I was gaining independence and getting to know myself and taking care of myself.

39:18

But the more independence I gained, the more I worried like, Oh, this is Diane going to succumb to her depression and die, you know, is Alan going to hurt somebody's and a really severe way, you know, is Andrew going to be protected?

39:33

So I feel like there's always this push pull in my mind where I've still felt very tied to them, but I knew I didn't really want to see my mom anymore.

39:42

From the moment I moved out. I didn't really want to have a relationship with her anymore.

39:46

And I think honestly that started like my separation from her, my detachment from her started when I was 16, when she first said she wanted to die, I think there was a part of me that was like, okay, well, almost like I started grieving her at that point.

40:02

So like, I felt worried about her physical safety in her depression, but I didn't miss her.

40:08

Cause

40:08

I

40:08

don't

40:08

think

40:08

I

40:08

ever

40:08

felt

40:08

like

40:08

she

40:08

was

40:08

my

40:12

mom. You know, I've

40:15

said it before. I'll say it again. I'll say it a million times.

40:18

If I have do grief needs a rebrand, something like grief so much more than just death, because there is so much grief in Gina story and so much loss.

40:28

It's

40:28

the

40:31

divorce. It's her, mother's depression.

40:32

It's knowing her brother who hurts her.

40:35

Doesn't want to hurt her.

40:36

It's leaving her family home and moving in with her friend's family is going to college and not having her own mother there to move her in because Gina does get where her high school therapist told her she could get.

40:50

She gets out of that house.

40:52

She gets to college and now she's a hundred miles away from her mom.

41:02

We talked occasionally like on school breaks in college, like I would stop by and see everybody.

41:08

And so I feel like we kind of had a, a surface level of relationship, but she called me desperate one time because he had been placed in a group home and she kind of thought like, okay, like he is going to be taken care of.

41:20

And he was kicked out like within gosh, I want to say within a few weeks.

41:24

And she suddenly had no other options for him.

41:27

So she called me at college and asked me to take time off school, to Drop

41:34

out temporarily and come home and care for him.

41:36

And she offered to pay me, which was kind of ridiculous because I don't think she even really have the money to do that.

41:41

But I just remember like, feeling like I was at a point where I'd been away from home enough time that I had let my guard down, you know, like I wasn't that vigilant anymore.

41:53

And I knew like I was living my best life.

41:55

Like I loved college, like the freedom, like all of it, it felt like she cut the phone call kind of sideswiped me.

42:03

And I was like, Oh, like, if I say no to this, what's going to happen.

42:06

What's going to happen to Alan. What's going to happen to her.

42:08

Like I was like all of that old familiar obligation and fear that I had for them just came flooding back.

42:16

And I remember like getting off the phone with her as quickly as I could.

42:21

And I actually looked up the number and called that same therapist that I saw in high school.

42:27

And I was like, I don't know, like, what do I do?

42:30

What do I do?

42:31

And she was like, when you say, no, You

42:37

say no, it's that simple.

42:40

I like being asked don't you want somebody to take care of you?

42:44

You just say, no, Gina just says, no, she doesn't move back home to take care of Allen.

42:55

And that know, that know opens up a whole world of possibilities for Gina Gina's mom ends up getting remarried.

43:06

Allen is moved into another group home Gina stays in college and she falls in love.

43:17

So he and I both moved to Colorado and got married out here.

43:20

And then Alan got kicked out again from a group home.

43:25

And so in looking around at options, my mom saw a lot of opportunities and Colorado near where my husband and I were living.

43:33

Boulder has amazing resources like to this day, like they have some of the best resources for special needs families, some of the best group homes, some of the best day programs and like respite care and stuff like that.

43:46

It's a really robust program.

43:49

So they moved up to Colorado, which happened to put them close to me and my husband.

43:54

So at that point we did see them.

43:57

I was really happy to be able to see Allen a lot more, but it came with, you know, kind of the weight of seeing my mom who was definitely like healthier than when I was a kid, but still he was suffering with a lot of depression.

44:17

Gina is a married adult.

44:18

She has her own family.

44:20

She's changed a lot since that six year old who found her mother crying on the kitchen floor, begging for life to be over, but not everything has not even when Alan gets his diagnosis, Prater, Willy is rare.

44:37

And even today is not always diagnosed in childhood learning about it.

44:42

Did make it possible for Gina to understand more about what Alan was going through.

44:47

And when Gina got the science of it and got her own genetic testing, it made her more relieved.

44:52

It validated a lot of what they knew about Allen and what could help him be safe and happy.

44:58

But a diagnosis could not replace all those years that Gina was taking care of Alan and didn't know what he needed.

45:09

It. Couldn't take him back in time and give him a better transition to adulthood.

45:12

Even if it could have done any of that, Gina believes it would not have changed things for her because of the caretaking role she had in her family.

45:21

And

45:21

when

45:21

the

45:21

diagnosis

45:21

did

45:21

come,

45:21

it

45:21

did

45:21

not

45:21

improve

45:21

Gina's

45:21

relationship

45:21

with

45:21

her

45:30

mom. The dynamic for me didn't feel all that much different.

45:33

Like I w we would go over and visit and, you know, she would tell me all of her problems.

45:40

She would, you know, try to lean on me emotionally around Allen and how depressed and isolated she felt with him.

45:49

She would, you know, ask us to take care of Alan Which at that point with my husband's help.

45:53

Like, we actually did that quite a bit.

45:55

Like we would take Alan on hikes or the movies, you know, we, we take them on outings cause we really enjoyed that.

46:02

But, you know, he still had all the obsessive food seeking behavior.

46:08

He still had a lot of medical things, you know, that made it really difficult.

46:14

What was he like is an adult's honestly, he was a lot like he was as a kid.

46:20

And

46:20

that

46:20

was

46:20

like

46:20

one

46:20

of

46:20

my

46:20

favorite

46:20

things

46:20

about

46:20

him

46:20

is

46:20

he

46:20

just

46:20

had

46:20

that,

46:20

like,

46:20

wide-eyed

46:20

joy

46:20

of

46:20

a

46:20

little

46:20

kid

46:20

who

46:20

still

46:20

believes

46:20

in

46:20

Santa

46:20

and

46:20

still

46:20

lives

46:20

for

46:33

Christmas. Like to the point where, you know, he was listening to Christmas music in the heat of summer, he was making his list, you know, year round.

46:41

He was still watching movies over and over and over again and reacting to them as if he'd never seen them before.

46:52

So there are still kind of that unbridled joy, but he also like As an adult.

46:57

I felt like it was a little more subdued.

46:59

Like once I think they found out that it was or Willi syndrome and they understood some of the mechanisms behind his behaviors and he started taking different medications that had kind of a sedative effect.

47:11

And so there'd be times that my husband and I would go over there and he would be kind of sitting off by himself and not very responsive because he had just taken a dose.

47:23

My mother had just given him a dose of medication.

47:25

So I feel like it smoothed out the edges.

47:28

Like he was a lot less violent.

47:30

His mood swings were a lot more even, but then the downside is, as it kinda took a little bit of a spark away too, Gina,

47:41

isn't solely responsible for Alan's Care anymore.

47:44

But the issue of is Care still weighs heavy on her.

47:48

Allen is her big brother.

47:50

She loves him. She wants to make sure he's okay.

47:52

No matter what she's been waiting for her mom to make a plan for Alan, for our Alan would be cared for in the event of their parents' death.

48:03

I assumed that he would outlive her.

48:05

And I knew from having grown up, like, I knew that I couldn't do it.

48:10

Like, especially after I had kids, like I knew that I was not willing to have him come live with me and to take care of him.

48:17

Like I couldn't handle it myself, honestly.

48:20

And then I didn't want to expose my kids to the violence and to the, you know, like my mom had to like lock all of her cabinets in her refrigerator.

48:28

Like their was just aligned for me where I was like, I'm not going back.

48:32

Like I'm not going back to taking care of him.

48:34

And I remember telling her that, but she didn't have a plan.

48:37

And the last group home that he was in was actually a situation that would of worked for him.

48:46

Long-term it was the first group homes that was designed specifically for people with Prader Willi or other food issues.

48:54

And they can handle even the behavior stuff.

48:57

And he was there for a trial period.

49:02

And I remember, and I remember feeling like such relief, like it was a group home that was also like a working ranch.

49:08

So they were animals.

49:09

So he was busy and he had stuff to do with the animals, which he loved.

49:14

And he liked the social aspect and all that.

49:19

It's the absolute perfect place for Allen and he's happy there.

49:24

And Gina has a small sense of relief.

49:27

And then For

49:30

some reason, like within a few days of the trial period of being over with my mom, withdrew him from the group home and said that it wasn't a good fit for him.

49:40

And for me, that was like the breaking point where I was like, I can't, I cannot be in a relationship with her anymore.

49:48

Like I just, cause there was no plan and she is fully expected.

49:52

I think either my younger brother or me to take care of Alan or she was going to let him just become a ward of the state.

49:58

And that was too painful for me.

50:04

This is just a continuation of the confusing relationship Gina has had with her mother, Diane there's the appearance, the formal living room.

50:12

The make-up when dad got home from work the need for other people to think things are okay when they're not.

50:17

And then there's the reality throughout their childhood Gina would hear her mother saying it was too much.

50:25

She needed help and here helping the right help for Allen.

50:29

And she turns it down.

50:31

So

50:31

this

50:31

is

50:31

the

50:31

end

50:31

of

50:31

Gina

50:31

pursuing

50:31

a

50:31

relationship

50:31

with

50:31

Diane

50:38

Isn't that complicated things, because I did want to have contact with Alan.

50:41

It was a bit of an orchestration, like to try to like arrange, to take out a gun out or to visit him, but not have to see her, but I would send him letters and he would draw me pictures.

50:53

And I would try to call at times when I knew Diane was at home so that I can talk to him.

50:58

You know, if Alan had a medical problem, she would send like a group email to me and my brother and my dad and a few other family members.

51:06

And so like, I kind of saw that he had had some medical things over the years, but I never, in my mind, he wasn't fragile.

51:13

And I think partly he was a fragile because you know, he was like, I don't know, six to, and like 250 pounds.

51:22

Like he was not a fragile person.

51:25

So

51:25

in

51:25

my

51:25

mind,

51:25

I

51:25

didn't

51:25

think

51:25

I

51:25

didn't

51:25

have

51:25

any

51:25

reason

51:25

to

51:25

think

51:25

that

51:25

he

51:25

was

51:25

going

51:25

to

51:25

die

51:32

young.

51:32

And

51:32

then

51:36

Gina is heading off on vacation with some friends.

51:38

And when the plane lands, she turns her phone on and she finds out that Allen is dead.

51:45

And

51:45

the

51:45

cause

51:45

isn't

51:45

a

51:45

a

51:45

hundred

51:45

percent

51:45

clear

51:45

he

51:45

had

51:45

what

51:45

appeared

51:45

to

51:45

be

51:45

either

51:45

an

51:45

asthma

51:45

attack

51:45

or

51:45

an

51:45

allergic

51:45

reaction

51:45

that

51:45

resulted

51:45

in

51:45

cardiac

51:57

arrest.

51:57

He

51:57

was

51:57

43

51:57

years

52:00

old. Any kind of loss, like the people closest to you, I think, want to make meaning of it for you, you know?

52:07

Like they want to classify it some way or like makes sense of it at some way.

52:12

And so I think, you know, I felt misunderstood because I think a lot of people close to me were just rushing to like, make meaning of it for me.

52:21

Like, Oh, aren't you relieved?

52:22

Like you've been relieved of this burden.

52:24

You are not going to have to take care of him.

52:26

Or, you know, maybe that I was coming out.

52:29

From like the shadows of abuse in some way, which also didn't feel right.

52:34

Cause that didn't, that just didn't ring true.

52:37

But I think like what I wanted them to understand and what I want people to understand is how deeply you can love somebody who has also caused you this much pain.

52:49

I think a lot of people thought I would feel relief with him gone because I was relieved of the burden of having to take care of him objectively speaking.

52:58

And Mike, my abuser died, you know, he, he caused a lot of harm to my body, but it didn't feel that way.

53:06

If there was no relief, I just felt really sad.

53:10

Like immediately unmistakably sad.

53:13

And then the other piece of it was I felt like we'd run out of time.

53:21

Like

53:21

I

53:21

think

53:21

there

53:21

was

53:21

a

53:21

part

53:21

of

53:21

me

53:21

that

53:21

thought

53:21

maybe

53:21

someday,

53:21

like

53:21

he,

53:21

and

53:21

I

53:21

we'll

53:21

figure

53:21

out

53:21

what

53:21

we

53:21

meant

53:21

to

53:21

each

53:28

other. And like, I think I had a little bit of magical thinking like, Oh, you know, someday we are going to sit down and we're going to like talk about our shitty childhood and like, and what we mean to each other.

53:39

Even though like I knew intellectually, he wasn't capable of that.

53:42

And so like I'm left to decide what we meant to each other.

53:45

And a lot of my grief has been untangling that question of what did, what did I lose?

53:52

Like when Alan died, what did I lose?

54:01

What do you think he meant to be each other?

54:03

I, no, without a doubt that as much as Alan was capable of feeling love, he loved me.

54:12

I know that he thought about me.

54:15

I know that he asked about me.

54:17

I know he loved my kids.

54:19

He got to spend some time with my kids.

54:21

That was always a little complicated.

54:24

Cause I would never leave my kids alone with him because I don't know if he was safe, but he loved babies and kids.

54:32

And I saw the joy on his face.

54:33

So I do feel like he genuinely loved me.

54:39

And I almost feel like in a way it's probably the closest thing that I ever had to an unconditional love, because I don't know that he was somebody who ever like held grudges or I don't know.

54:51

There was like the things that you have in your normal sibling relationships where there's baggage and like ambivalence or a sibling rivalry.

54:57

Like I think it was just a very like pure love, you know?

55:03

So for him, to me, I feel like it was a very simple love.

55:09

And then for me to him, I think that that's where it feels a lot more complex because I, I loved him, but I also was terrified of him.

55:17

I always like had this weird mix of like gratitude and guilt, like I'm an able-bodied person.

55:25

So I think I was always really aware of how lucky I was that like, I can do things that he couldn't, you know, I can drive a car, I can go to college, I could get married.

55:35

Like all these things he couldn't do. I felt very grateful.

55:37

And then I also felt really guilty about it.

55:39

Like why does an ally to get to do all these things?

55:41

You know, like there's all these aspects of life that he didn't get to experience.

55:44

And I don't know if he felt that loss ever Sometimes

55:54

brings out the worst in us and the worst in our relationships.

55:58

And almost immediately after Alan's death, when Gina his family gathered together, I remember feeling like a lot of fear, like, Oh my gosh, I'm slipping back into this orbit that I don't want to be in.

56:10

I mean, at one point we were all gathered at my mom's house and everybody was kind of playing their historic roles and the funeral hadn't been planned yet.

56:20

And at one point my dad was like, can go talk to your mother.

56:23

And I said, no.

56:25

I said, I can't, I can't do it.

56:27

And in my mind, I was like, I'm not going to do this anymore.

56:29

Like, I'm not going to pair it for you.

56:30

And I remember like I got physically ill.

56:33

Like I walked out of the house and I threw up and I feel like at that point I was like, I just I'm done.

56:38

And like, this is not the life. This is not my role.

56:41

And thank goodness somebody did step in.

56:44

I think they had a minister who came in and basically like mediated and sat down and planned the funeral with them.

56:52

It's August in Colorado.

56:53

And Gina gets ready to say goodbye to her big brother at a Christmas themed funeral

57:02

and

57:02

our

57:02

member

57:02

like

57:02

walking

57:02

and

57:02

like

57:02

open

57:02

it

57:08

up. One of those, it was like a Lutheran church with one of those huge heavy red doors that I feel like every Lutheran church has.

57:16

And I just remember like this flood of air conditioning hitting me and then the sound of Christmas carols.

57:22

And it was just like so appropriate for Allen.

57:29

And I don't know that they told everybody that it was going to be a Christmas thing of a funeral.

57:32

Cause I remember like looking at people's faces when they walked in and like hearing all the Christmas carols and I might be making this up, but I feel like there was like poinsettias.

57:40

It was like something. And like, I feel like there was a red flowers.

57:43

Like I felt like it was like, they really took the same and ran with it.

57:46

There's a lot of pictures of Alan.

57:48

Like there was a, you know, a table with a bunch of pictures of him, including a lot of pictures of like him seeing Santa, like, which is something that he did well into adulthood.

57:57

So it felt like in the end, even though it was a lot of like heartache to get there, it felt appropriate for him.

58:13

It honored him and it honored her.

58:16

The

58:16

funeral

58:16

got

58:16

planned

58:16

without

58:16

Gina

58:16

taking

58:16

on

58:16

her

58:16

old

58:21

role. Gina didn't have to be the parents, the pastor, she just got to be a grieving sister and all of those nos moving out, not coming home from college, not planning the funeral, they've been big moments for Gina, but those big moments aren't done for her spending so many years taking care of other people means that Gina still needs to learn how to take care of herself, how to acknowledge and honor what she lost and what she needs.

59:00

I see my kids and the way they move through the world and they're just not afraid.

59:05

And they know that they don't have to take care of me.

59:08

I get a lot of joy out of watching them have the childhood that I wish that I had had, you know, and the sibling relationship that I wish I could have had with Alan.

59:18

But the flip side is if I, Oh, like I was At

59:22

a little, like I was as vulnerable as my 10 year old son is, and this is what I was doing.

59:28

And I was cooking dinner. And when I was 12, I was chipping in my babysitting money to help pay the electric bill.

59:36

And like the one thing that I still struggle with, like right now to this day is identifying what I need.

59:43

Whether it's like, you know, my husband asks me like, Hey, what do you want for dinner tonight?

59:48

Like my mind will go blank. Like it's kind of eerie how it just almost like, do I need food?

59:54

I wasn't even aware that I was hungry.

59:55

I like the one thing that was interesting is Alan had this insatiable appetite and the sot food.

1:00:02

And I am somebody who am not always aware that I'm hungry until I'm like hangry, you know, until I'm like shaking it.

1:00:11

And then I think that's a carry over from, from that.

1:00:16

But I think honestly, like the more that I like to watch my kids, like I have a need an express it and ask, you know, like that's like this phenomenon.

1:00:26

Then I was like, wow, that's really, that's really cool.

1:00:28

How do you do that?

1:00:57

This has been Terrible Thanks For Asking I'm Nora McInerny we talked a lot about the syndrome Alan had is called Prater Willi syndrome.

1:01:04

And we learned there are different kinds of Prader Willi we learned that some people say Prater Willi in some people say Prader Willi okay.

1:01:12

Another thing is that even with a diagnosis, sometimes the health problems associated with it are found later than would be ideal.

1:01:20

You might know that already, if you have someone with Prader Willi in your life, but if you don't and you're curious, you can hit up the Prader Willi syndrome association or at the foundation for Prader Willi research Also where Public Media APM stands for American Public Media Public who is the Public you're the Public what a nice chat.

1:01:44

Who is the Public you are in the Public, who is the Bob?

1:01:47

Like you're the Public we have gotten support from so many people over the years.

1:01:52

We've been doing this for years. So I just wanted to write.

1:01:55

I'm just, you know, these are just some, thank you. So there's a thank you to Samantha Cantrell who supported our show 'cause she also lost her husband to glioblastoma, which is the worst in her husband, Matthew.

1:02:06

She wrote to us and said he was a larger than life.

1:02:09

He kept me laughing and I'll always love him.

1:02:11

And her counselor recommended TTFA as a resource that might help.

1:02:15

And she was right. Thank you, Samantha.

1:02:18

We got support from Kaylee Sadler, possibly Kali, but I'm doing my best here.

1:02:23

She supported our podcasts because it brings so many great and wonderful things into this world.

1:02:29

A sense of solidarity for many that struggled to find compassion elsewhere in life, a better understanding of, and empathy for those walking a path for a different firm, our own space to feel allowed and accepted exactly as we are.

1:02:41

And most especially love.

1:02:43

Thank you, Kelly, Collie, Kelly, or Kaitlin.

1:02:46

It could be any also Tori Shel.

1:02:49

Thank you so much, Tori.

1:02:51

You said this podcast has fundamentally changed her relationship with grief and grieving, and she is a better person for hearing these stories and expanding her understanding of the human experience.

1:03:00

I'm literally just READING compliments to the show.

1:03:04

Okay? Deal with it.

1:03:06

Thank you. And Holly Mitchell, who has been listening for years now has heard every episode and thought it was about darn times.

1:03:13

She contributes something toward a project I support and feel passionate about.

1:03:16

Thank you so much, Holly.

1:03:18

We appreciate you. We all appreciate you here at team.

1:03:22

TTFA where our production team includes myself.

1:03:24

Marcel, Malik, Kivu, Jacob Baldonado Medina, Jordan Turgeon, Phyllis Fletcher, who is so wonderful.

1:03:31

Hannah, me Coq Ross and our theme music by Jeffrey Lamar, Wilson.

1:03:37

We,

1:03:37

I

1:03:37

don't

1:03:40

know. We just, we just appreciate. Yeah, we just appreciate you.

1:03:43

We appreciate you. By the way, if you want to support our show, you can go to TTFA dot org.

1:03:47

There's a donate button, by the way, you're supporting the show just by listening to it.

1:03:51

No pressure. Literally the worlds were a salesperson here to tell you that support our shore or like either one is, but the membership percent.

1:04:02

I know Jon is listening to us being like, God, Nora here.

1:04:05

Why do you have to make this so hard? I have to make everything hard, John.

1:04:09

OK. You can contact my therapist.

1:04:10

Allen, if you want more information, he won't give it to you because he believes in privacy.

1:04:15

What a guy? What a guy.

1:04:18

Hello boy.

1:04:20

Anyways, speaking of Care, I'm going to go take care of myself and step away from a computer.

1:04:26

Get out of this closet.

1:04:28

Stand up, straight, drink a glass of water.

1:04:30

What else do I have to do?

1:04:32

I can not wait to fall asleep.

1:04:34

Face down tonight, face down all.

1:04:38

I got like a hibernating frog, just like bury me in the mud by the mud is my comfortable and just, I don't even need to breathe at night.

1:04:46

I literally sleep face down in a mattress pillow over my head, like turned me off for the night.

1:04:51

Sleeping is so bizarre.

1:04:53

Just truly at night.

1:04:56

We just turn off.

1:04:57

And then just so funny to you.

1:04:59

Like I think about at night, everyone in your neighborhood turning off for the night and then turning back on in the morning.

1:05:05

It's so cute.

1:05:06

Humans are so cute in that way.

1:05:09

Also, if there's ever someone that you really dislike, just imagine that like sleeping and you don't feel like, Oh, just like you're in a sort of like a Gentle

1:05:18

a little person. You also have to shut off at night.

1:05:20

Oh, okay.

1:05:22

Well this has been, this has been, this has been a thing and, and good, good night.

1:05:30

We We get support from Fordham the university's graduate school of social get support from Fortum University's graduate school of social service. Learn to lead the change for a better tomorrow at Fordham university's graduate school of social Learn to lead the change for better tomorrow at Fortum University University School of Social service. Take advantage of flexible programs at their three Nora campuses and learn more at Fordham dot EDU slash G S E T advantage of flexible programs at their three New York campuses and learn more at fordham dot EDU slash S. Okay. So Gina, I've just got a couple questions. We're just gonna get into it. Is that okay? Yeah, totally. I'm Nora McInerney, and this is terrible. Thanks for asking. And that was Ginas. And When we get into it, we're going to be continuing the conversation that we've been having about care with Ginas story. It's a story about a lot of complicated emotions, about the long tail effects of being thrust into a caregiver role when you're still a person who needs a lot of care, a child. But this complicated story starts in a really simple PraderWilli Gina's parents met and fell in love. They, like, were a summer fling. It was, like, maybe nineteen sixty nine, nineteen seventy, Vietnam war was going on. I think there was, like, a lot of looking for a better life, like, you know, like wanting something good and they dated, you know, over that summer and then they were married by, like, the day after Christmas that same year. So my sense is that they were kind of idealist. Like, they were, like, looking for some sort of happily ever after. And for a while, Gina's parents found it. My mom was a homemaker and my dad was kind of a rising star in the computer science world. He was an academic. He was teaching at Georgia Tech in Atlanta, which is where I grew up. And so early memories are that, you know, my mom cooked and was crafty and volunteered with PTA. My mom really loved to sew. She loved to bake. She's a beautiful woman. And my dad was very intellectually like, I remember him reading, like, not totally age appropriate books to me, but I was like, you read Alison Wonderland to me. At an age when I didn't fully understand what was going on. There's so much in that book that I didn't understand, but I loved the fact that he would read that to me and he would sit down and explain to me how telephones work and he liked teaching me about prime numbers and stuff like that at a very young age. I think he just really enjoyed sharing that aspect of himself with me. He liked kind of dissecting things and thinking about things and asking questions and and that's something that I've carried with me into adulthood. He kind of taught me how to dig deep and think about stuff that you might not otherwise think kind of taught me how to dig deep and think about stuff that you might not otherwise think about. Ginas was the second of three children. Her older brother is named Allen. He just was like a sweet sweet kid. Like, he loved playing with matchbox cars and he would line them up. We would watch movies a lot together. Like, he loved watching last and old Youll and, you know, he could watch stuff like that if it involves a kid and a dog, he could watch a movie, you know, five times in a row if my mom let him. Every single time he saw it, he would laugh at every part. Like, it was the first time he ever heard it or ever saw it. And same with music. You know, at some point in our childhood somebody gave him like one of those yellow Sony Walkman and a bunch of tapes and he would walk around the house with, like, headphones on and playing his TTFA and singing in his very loud, very slurred speech. And that was, like, the happiest he could ever be. Alan loved Concrete Music Bing Crosby. He loved Christmas music all year round. It was just Gina and Allan. Until their little brother Adfree was born. Andrew came along and I felt like almost like he was my baby from the beginning. Like, I think I recognized from young age that he was like my ally and my playmate. He was, you know, a playmate that I interacted with. Like he was very imaginative and we do the things that kids do where you like line up all your stuffed animals and teach them Like, he was very imaginative and we do the things that kids do where you like line up all your stuffed animals and teach them school or we would do these like toy parades down. The hallway and, like, throughout the whole house where we just, like, line up every single toy we own and then just, like, marched them down. Like, I don't it was a production. Gina's relationships with Andrew and with Alan were different because Alan and Andrew were very different. I was aware from a very, very young age that I could do things Alan couldn't. I was three years younger than him. He and I kind of learned how to walk around the same time. He could talk but his speech was really slurred. And so I knew from a very young age that, like, a lot of people didn't understand what he was saying. But I did. Like, I kind of interpreted for him a lot, especially in public. So I think there was an awareness on that Youll. Like, he's older than me, but think I always felt older than him. Like, I knew that he had a lot of medical stuff that was very mysterious he had some seizures and would have to be rushed to the hospital. So I I was very aware that, like, he needed a lot and there was something wrong I would say that I probably could say from a very young age that there's something wrong with Allen, but in terms of like knowing that what that was or you know, having any sort of context for it, it wasn't until much later. It's not just, Gina, who's missing It's not just Ginas missing context, It's her parents too. It's Ellen's doctors because it was the 1980s TTFA nobody really knew what made Ellen different. The way I was told is that he was born breech with the cord wrapped around his way I was told is that he was born breech with the cord wrapped around his neck. And so my mom had always said that he was a really floppy baby, like that's the word that she used. He was really floppy when he was born, and he didn't cry very much. And so at the time, like, the doctors all knew something was wrong. Like, I think almost immediately, if not immediately, like, they knew something was going on. But I think they thought it had to do with, like, maybe he lost oxygen, like he had some brain damage. But there wasn't, like, any sort of telltale characteristics like, you know, like somebody who has down syndrome, Youll like there's characteristics that might point you to something like that, there was none of that. So like my earliest memories, doctors would use the term mentally retarded or brain damage. Like that was the language that they like that was the language that they used. That's what teachers would say. And so that was the only, like, context we had. It's like, oh, he has brain damage. Like, I think people would say shes handicapped or he's disabled. But think part of what was really hard for my parents is that there wasn't like a diagnosis. There's no book to look at to say, oh, this is what you can expect from him developmentally. You know, this is shes are his milestones. There was none of that. It was just all, I think probably felt like a huge mystery to It just all I think probably felt like a huge mystery to them. That's how people talked about Allen around Ginas when they were kids. Not all of those things are things we'd say today, like shes word, we don't say that, but Alan was different. So in the meantime, Gina and her family are just doing their best, living in suburban Atlanta. And we're talking about the house layout because the house layout that Gina grew up in is important to this we're talking about the house layout because the house layout that Gina grew up in is important to the story, I promise. So walk in the front door and there was like a formal living room, which I'm not sure how many people have anymore, but there was like the room that the kids were allowed in, you know, with the, like, Ethan Allen furniture and the cream colored carpet that we weren't really supposed to walk on and a huge front picture window. And then to the left, there's like four stairs going up to my bedroom, the master And then to the left, there's like four stairs going up to my bedroom, the master bedroom, and then my younger brother Andrew was up on that level too. And there was a bathroom that the kids all shared and and the master had its own. And then coming in the front door, if you didn't go upstairs, then you walked in and it was like a den which had like the orange shag carpet. It was like the room that you could hang out in. We had a Youll TV that was like in one of those huge I don't even know what you call it. It's like not a media cabinet because that wasn't a thing Yeah. But it's like TV is furniture. Yes. Yeah. Oh, god. That's so fancy. I wanted. That's so bad. It's like, you were just describing the kind of house where as a kid, I'd walk in and be like, you are rich. Like, Youll tedious furniture. You've got a split Youll. You've got two living rooms, like, what don't you have? The split level house a representation of the suburban American dream. For listeners who don't know, a split level house means you walk in. There's a little platform entry. You can go up. Or down to a lower level that's not quite a basement. You're always aware of what is going on in the house. I just felt like you could always hear everything that was happening. So if my mom was not doing well, I could hear it. If my parents were fighting, you know, before my dad left, like, everybody in the house, there was no where they could go to, like, you know, protect us from that. And even though her parents marriage had started out with so much hope, there was a lot to overhear. Gina's mom struggles with severe depression that wasn't diagnosed or treated at the time. And what I observed from a young age is just that she would be fine Youll know, she'd bake or play music, you know, she'd be I think pretty happy. And then shes would sink into kind of a dark place. You know, my dad would leave for work. He was working long hours and really, really ambitious. And she would kinda stay in her pajamas or stay in bed and kinda leave my brothers and I to kinda fend for ourselves. And then you know, shortly before my dad was due home, she would suddenly, like, come out of the bedroom, like, fully made up and, like, ready for the day. You know? And I think it felt very confusing and very overwhelming. Like, now I'm thinking, like, oh, she was, like, really just trying to keep shit together and not maybe let my dad know how much she was struggling. But mom was struggling with her depression with raising Allan, and mom and dad also fought a lot. And by the time Ginas was five, they were separated. I remember being like shes kid with the divorced parents. I remember that being part of my vocabulary in kindergarten. Like, the first memory I have of, like, really understanding, I just remember being in my bedroom. I was supposed to be in bed or I was in bed. Maybe but I wasn't asleep and I would just remember hearing this noise and coming, like, kinda creeping down the hallway and sitting at the base of the stairs where I could see all the way across into the kitchen and my mom was just in a heat on the linoleum floor. And she was sobbing and she was kind of like the sound that I heard was her sobbing and I heard her kinda murmuring to herself that she just couldn't do it anymore. I just I just wanna die. I can't do this. Just a lot of, like, over and over again. And I just, I can't do I just I can't do this. I just wanna die. I just wanna die. And I think as a six year old, like, I think I was terrified by that. I think I thought maybe if she said she was gonna die, if she wanted to die, she was gonna melt into the linoleum floor and disappear. Youll know, like thought that's shes gonna will it to happen, then that means she's gonna die. And I think on some Youll, I also knew that there wasn't room for me to feel that, like, to feel terror or to feel sadness about that. And so I think for me that kind of feels like the point at which I was like, okay. Well, it's it's up to me. You know, like shes can't do it, then I guess I'll do it. We're going to take a quick break. We We get support from get support from Talkspace. I just realized we're coming up on like, I mean one official year of whatever this is that we're going just realized we're coming up on, like, I mean, one official year of whatever this is that we're going through. We had a meeting with the whole TTFA team when we were like, everyone else just not feeling good, actually feeling very bad, actually feeling very overwhelmed and like they are, they're hitting a We had a meeting with the whole TTFA team where we're like, anyone else just not feeling good, Youll feeling very bad, actually feeling very overwhelmed and like they're they're hitting wall. I think that's pretty much everybody, which is why it is so important to make sure that you are taking care of yourself, taking care of her feelings, guess who can help you do I think that's pretty much everybody, which is why it is so important to make sure that you taking care of yourself, taking care of your feelings. Guess who can help you do that? A good A good therapist. That's where Talkspace comes in because they let you send and receive unlimited messages with your dedicated That's where Talkspace comes in because they let you and receive unlimited messages with your dedicated therapist. Talk to face has thousands of licensed therapists with years of experience in over 40 specialties in a secure, it is a Talk Face has thousands of licensed therapists with years of experience in over forty specialties. It is secure. It is private. So we had to deal for So we had a deal for you. you. We will get a, a a hundred dollars off your first a month with Talkspace instead of a match up with a licensed therapist today, go to talkspace.com or download the app and make sure to use code TTFA to get that a hundred dollars off and show your support for the show that's TTFA and get a hundred dollars off your first month with talk space. So to match with the licensed therapist today, go to talk space dot com or download the app and make sure to use code TTFA to get that hundred dollars off and show your support for the showShop, that's TTFA and talk space dot com. We get support from the lap. And I know a lot of you do and I know a lot of you too. Guess what is totally normal, having bladder leaks, having a sudden switch to it and then not being able to hold it is very Guess what's totally normal, having bladder leaks, having the sudden urge to pee, and then not being able to hold it. Very common. Your lab treats the urge it's cables made easy with auto Yar Lab treats the urge. It's Youll made easy with auto Cagle. This is an award-winning FDA cleared way to improve your pelvic floor control of your This is an award winning FDA cleared way to improve your pelvic floor, control your urine, maintain your freedom, and privacy of your own home. You are live is safe and Your love is safe and effective. You just put it in You just put it in yet. You sit back and relax right now, my listeners can get $30 You sit back and relax. Right now, my listeners can get thirty dollars [email protected]. Just use promo code TTFA at checkout that's Y a R L a p.com code TTFA at checkout off at dot just use promo code TTFA at checkout. That's YARLAP dot com code TTFA at checkout. We're back, and Gina has overheard her mother weeping, saying, Shes just can't do it anymore. And Gina decides, okay, then I'll do TTFA meant, you know, trying to keep my brothers out of her hair. Like, I feel like out of her hair was, like, something that she always said, like, I need kids out of my hair. But I feel like I kept my brothers occupied and entertained. I cooked scrambled eggs for dinner. I helped bathe, Alan, I talked to my brother's end and kissed them, good night. I read to them. I mean, I think in the beginning, like, I feel like I probably enjoyed a little bit of it. Like, it was playing house. Like, I can I can do some of these things? can take care of things. And then as I got older, the burden of it really, really started to take over. I have this one memory, like, around age eight, I think. I was I was in girl scouts at school. And my girl scout troop had shes service project where we went over to this elderly woman's house and we were gonna clean her whole house for her. And eight years old, I think it was maybe in second grade. And so me and these other eight year old girls are like super excited to help and the adults are trying to teach us how to use a vacuum cleaner, how to spray pledge onto, you know, a coffee table and dust and all that kind of stuff. And I just remember, like, I already knew how to do that. Like, I was, like, 0II know. Like, I can show you how to vacuum. I know how to turn it on. I know how to do this. I know how to dust the blinds. So at age eight, I already was doing those things to to ease the burden on my mom. This is called parenterification shes a child is forced into the role a parent would usually take. And it's also a serious loss. This is Gina losing a significant part of her childhood, which she spends taking care of other people. Not just by completing tasks, but by being good, making sure that she herself does not demonstrate any personal needs. I also was a really good student, I think, because I was aware at a very young age that I needed to almost be the opposite of Alan. You know, Alan had severe intellectual disabilities and severe developmental disabilities. And so I think in a lot of ways, whether was aware of it or not, like, my job was to be the opposite of him. Like, if he had special needs, I had to have no needs. If he was very dependent on people than I had to be very independent. My mom Youll, like, used to tell story about the first time she dropped me off for kindergarten, there were so many kids that were like clinging to their parents' legs and like, you know, didn't want their parents to leave them there and just felt so, like, scared about the whole thing. And my mom was like, you know, you just walked right in and he turned around and you waved and you said see later. So I think, like, school was definitely a refuge for me, and it was also, like, my way to be easy. You know? Like, didn't have to worry about me because I was gonna do really, really well. But Gina, like all of us, can't just decide to not have needs. Instead. She just learned to meet them, to bypass them, to push them to the very back she just learned to mute them, to bypass them, to push them to the very back burner. She's just a kid, but She's acting like a partner to her mother and like parent to her little brother and her big brother. And you've heard about Alan, he's so sweet. But then he hits puberty. When he hit puberty, his behavior drastically changed. You know, now, today we know through genetic testing that he has something called Prater Willie syndrome. Back then, we didn't know, we didn't have any context for it. But one of the hallmarks of PraderWilli is, you know, violent mood swings, obsessive behavior, and then this insatiable appetite. Prater Willie affects chromosome fifteen, and it affects, you know, the pituitary gland, like a lot of hormonal type stuff. So we actually know now that it's common that people with really when they get to puberty, start having some huge behavior problems. And so what that looked like for Allan was that he was always hungry. And my mom, you know, was a single mom. Like, we didn't always have a lot of food in the house, so that was problematic. So he would like hunt for food in the trash. Youll would try to eat toothpaste or, you know, sugar or spices from the cabinet. And then Because I was in charge, if I tried to stop him, he would just become very violent. You know, if I told him he couldn't eat from the trash. He might have, you know, grabbed me from the hair and, like, throwing me down on the ground or punched me or slammed me into a wall. There was, you know, one time in the kitchen that he actually grabbed steak knife and tried to stab me with it. I was able to move out of the way. But it was almost like like when you think of somebody who's abusive and and there there's a maliciousness behind it or like a premeditation shes like, you know, like, it wasn't like, I think even when I was a kid, I knew he didn't want to hurt me. Like, I knew that he was not in control of his body. I was terrified, but I also, like, I loved him so much, and I wanted to protect him so much, that I was like, I wanted to save him from himself. So like, I wasn't going to stop, you know, trying to keep him from eating from the like, I wasn't gonna stop you know, trying to keep him from eating from the trash. Like, didn't want him to eat from the trash. So I was gonna keep telling him that he couldn't do that, that it wasn't healthy or safe to do TTFA. But then I would suffer sequences of him, you know, lashing out at me or or kicking or punching me in response. And then often, what would happen is he'd flashed out. Like, it was a very almost involuntary reaction that he had, and then he would seemingly either bleeding or crying, and then he would just he would start crying. He'd be like, oh, you know, I not mean to, know, he felt horrible. Like, it was not what he wanted. He just wanted the food. How much of your childhood behaviors your childhood thoughts and feelings were a response to being Allen's little sister. I I mean, I think almost all of I think almost all of it. So when I was born three years later, it was an emergency c section even though there was nothing unusual about the pregnancy. And I was like put in the NICU for like a week even though I was like almost nine pounds and healthy like Youll know, my mom said that the nurses loved having me there because they could actually like hold me. I wasn't fragile. And at some point, they kind of pronounced me as quote unquote Youll. You know, like, they just kind of were like, oh, this one's gonna be okay. And I kind of feel like that was my destiny from that point. Like, you know, I mean, I just kinda feel like, oh, like, she's gonna be okay. And then it was like, I had to be okay. Dad lived out of town at this point. He didn't really know about the day to day of his kids' lives. And mom. I think she was living in fear. Like, you know, in public, she presented as being really well put together. She was kind of a perfectionist. She was very adamant that I know ever tell anybody about what things are like at home? Like, she didn't want my my dad lived out of state most of my childhood. And so we saw him occasionally but shes, like, didn't want me to tell him what was happening. There was this paradox because I feel like she was overburdened with her role as a single mom and parenting a high needs kid. And she would say that she wanted to die because she couldn't take it anymore. She didn't wanna have kids anymore. But then she also had this fear that my dad would find out and that he would take us away from her. It's a lot and Gina knows it's a lot, especially when she gets to high school, but There's nothing she can do about it. Ellen needs her. Adfree needs her mom, needs her, but the more time Ginas spends with friends at their homes. Shes more the unfairness of our own situation is highlighted. I was watching my friends have experiences and that I wasn't having, you know, like they could go out on the weekends because they didn't have people to take care of at home. Or they didn't have to work to help pay the bills at home and stuff like that. So I think my awareness of, like, oh, this is not shes situation I wanna be in it anymore was growing, but then the other thing that was happening is I was hanging out with friends more, and I think my friends saw things. Youll know, they they would see Allan's violence. They would see bruises on my body. You know, I I don't remember how much I confided in them. I do think I had couple of friends that I told some things too, but I was afraid if I told too much that my mom would kill herself. So I always felt like I was walking a line, like, but at some point, I think my friends maybe talk to one of my teachers shes school counseling office knew me because there would be days that I would be getting ready for school. And my mom would be on her bathroom floor saying, that she wanted to die. And I would worry, like, if she doesn't get up, she's not gonna go to work and she's gonna get fired or, like, I just was worried that she would not be alive when I got home from school. And so I developed this routine where I would go ahead and get myself ready for school and make sure my brothers got out the door to school. Alan went to special needs school and then I would show up at my high school and I would into the counseling office and call one of my mom's friends and say, hey, Youll know, can you take her out to lunch today? Like, if she's having a bad day, can you check on her? And then would go about my day. Youll, you know, I'd come home and she'd be alive. So there was that. And then, you know, I came to school one day and the school counselor said, hey, your teachers and friends are worried about you. There was like a county social worker who made the rounds. And she's like, I want you to sit down and talk with her. And so I had this meeting with the county Youll worker and she, you know, asked asked me if I had any bruises on my body, and I showed her one bruise on my back. I didn't show her, you know, three other bruises that I had. At this point, I think I was maybe fifteen. So we just kind of sat down and talked and she asked me about Allan's violence. She asked me Youll do I have a dad? Where is he? What do my days look like? Am I getting enough to eat? You know, just kind of, I guess, I don't know what all shes typical questions would be, but I just remember she was asking stuff along those lines. And then at some point, she said, have you ever been to the doctor for your injuries? And I said, no. And she's like, you've never been to the emergency room. And I said, no. And she's like and you have a dad. And I was like, yeah. You know, he lives in another TTFA, but yes. And so at some point, she just kind of like put her pen down and she was like, I think you need to go with your dad. Like, I think you need to get out of there, which to me didn't feel like an option because I felt like who's gonna take care of my mom and Allan and Andrew if I leave. And also, like, I kinda like it here. Like, I've got friends. I like school. I'm doing really well in school. So Youll at that point, I thought it was kind of case closed. Like, I certainly didn't tell the social worker everything that was happening. I didn't tell her about my mom's how bad her depression was. I didn't tell her about all the, you know, the level of violence that Alan was capable of and Youll but, you know, I think she also looked at me and said, saw fifteen year old who was almost out anyway and and had a pass. So I thought that was the end of it, but then sometime after that, my school mandated that I go to therapy, like go to, like, 6 sessions of therapy. And I remember my mom getting notified of that and being furious. She didn't want me to spill all the secrets or to tell anybody how bad things were. One of the biggest blessings of my life is the therapist that I was paired with the initial session. It was like my mom and I and my mom was like, I don't know what's going on with her. You know, she seems really depressed. Yes. Things are hard at home, but, you know, she just was like, I don't know what's going on. Maybe she's on drugs, I don't know. And then I remember the therapist saying, okay, you know, well, why don't you step out and we'll start talking? And I remember being really afraid, like, you know, whose side is this therapist on. Like, what does she wanna know? And and what would happen if I tell her things? So I I did not tell the therapist everything. You know, we initially talked about school and what I wanted to study and did I want to go to college what kind of bands did I like to listen to, stuff like that. I think she kind of was just trying to get to know me, and then I would talk a little bit about Allan just kind of steadily opened up a little bit more and a little bit more. But she was the kind of therapist who could see people, you know, like really intuitive. I don't know what it must have looked like for me to sit. Across from like, I feel like she got it, like, without me having to say much, there was one session towards the end. Where, you know, she's kind of looked at me and she said, your mom thinks you're exaggerating. Your mom thinks you're exaggerating. How bad things are at home? And I was like, I'm not. And like in my mind, I'm like, oh, if Youll only knew. And I just said, I'm not. And and the therapist said, I know. She's like, I actually think things are harder than what telling me. She's like, I think your mom was really shes I think your mom is really depressed. I think, you know, you're taking care of everyone and no one's taking care of you. And she said, don't you want somebody to take care of you? And I just started balling. Like, I felt like, that's all I wanted. Like, I wanted to, like, climb into the therapist's lap and just like, that's all I wanted. wanted somebody see me and take care of me and that's not something that I got to have. We're going to take a quick break. 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I'm Desa, the host of a new podcast, deeply human. When you cry, it can sometimes, like, help you irrigate your emotions. You are tempting to induce deja vu through virtual reality. I'm finding out what we all wanna know. Why do you do TTFA do? Deeply human, a BBC World Service, an American public media coproduction with iHeartMedia. Listen on the iHeartRadio app or wherever you get your podcast, starting March eighth. 8th. We're back in Gina school has sent her to a therapist and the therapist has asked Gina a life changing We're back in Ginas school has sent her to a therapist and the therapist has asked Gina a life changing question. Don't you want somebody to take care of you? And yes. Yes. That is exactly what Gina wants, what she has always wanted. It was something where she basically relinquished me from responsibility. Like, I'm not the problem in the family. Like, shes things that are happening at home are not by fault. And that was so free into me. But yet, she also understood that my mom was hurting I don't think my mom was intentionally trying to make me miserable, but my mom was coming from a place of just such deep pain that she was not mothering me. And think she understood that Alan's condition added layer of complexity that no one could Youll. And, like, most mentally healthy people would be struggling with dealing with Allen's intense needs. So, yeah, I think therapist got it. But then I think she also understood that she needed to, like, plant some seeds and get me out of there. And so, like, our last couple sessions, she brought me college brochures and applications and, like, she knew that I didn't want to leave the state and and live with my dad. So shes just kind of planted these seeds. Like, what's your plan? Like, how are you gonna take care of yourself? Do you wanna go to college someday? How are you gonna get there? And I think shes made me believe that I could step away, that it was okay for me to leave. Because I think, know, another element of this was that if I started to think about leaving home, then I equated that with my dad leaving. You know? Like, I I felt like I'd be abandoning the family in the same way that he did. Like, and I think that some of that came from my mom. You know, like, if I was spending too much time friends, if I wanted to sleep over at someone else's house, she felt like I was abandoned in the family. So I think it took a long time for me to understand that it was okay for me to leave, that by leaving home, I wasn't hurting my family. I was taking care of I was taking care of myself. Even if these decisions are painful for her family, she's not doing it to hurt her family, she's doing it to take care of herself. And as makes these decisions, these small steps towards prioritizing herself and her needs, She's given a big, big opportunity. She remembered something a friend had said one afternoon as they were hanging out in her friend's finished basement. This brand knew how hard things had been for Gina and said to her, hey, you know, you could always just live here. had filed away that conversation somewhere in her brain. And one night, things are really, really bad at home. It's like I just I had reached a breaking point, you know. My mom was screaming about something, like, she just was manic and, like, shes just felt, like, completely unhinged, and Alan was out of control. And I think in my mind, it was almost like a I had this kind of love and fear dynamic with my family. I felt like the scale tipped to fear and I just, like, hit a point where I was like, okay, I gotta go. I gotta go. And I left and, you know, my friend's and her mom just kind of welcomed me in. There wasn't a lot of explaining I had do. My friend's mom did make me call my dad and tell him where I was because she felt like she didn't wanna participate in something where my parents didn't know where I was. I don't know. She's just like, I'm not trying to get in charge for kidnapping. Exactly. She like, let's just I I need somebody to, like, give me a green light here. And so I called my dad, and I didn't talk to him very much. Like my dad, when I did see him, it was wonderful. Like, I loved my dad. I wish I had more of him in my life, but he wasn't there. He wasn't consistent. And so this was, like, a big phone call. Like, I had to call and, like, let him know that I moved out. And ask for his blessing for me to not have to go back home. And I just remember it was like one of those calls were like you're crying so hard. Like, I don't know he understood anything that I was saying. But I just said, I can't I just I can't do it anymore. I just can't do it anymore. And I don't feel like I said much beyond that. Like, I just was like, I had to get out. I can't do it anymore. I just can't do it. And he was like, okay. He's like, I understand. It's not the same thing, though. Ginas a kid, her dad, is an Youll. Their leaving is not the same. That night, Ginas spends the night at her friend's house knowing that she doesn't have to go back home in morning. It was like a mix. Like, it was freeing and it also was weird. Like, to be in a house where there's food in the refrigerator, and I don't have to guard it from Allen, you know, overeating and making himself sick. There wasn't it was a really quiet house and that was I think initially kind of scary, like just very unfamiliar. Like, oh, TTFA took a while. Like, I, you know, I lived there for until I went off to college, basically. And it took a while for me to kind of, like, stopping so vigilant and to realize that, like, you know, I didn't have to take care of my friend's mom. Didn't have to take care of my friend. Like, she had her bedroom upstairs, and I was in the basement. And so, like, we had this really wonderful healthy boundary where, like, we would hang out and maybe do homework together, but then I Youll, like, retire to my room or she could retire to her room. So I got to be my own person. I got to come and go. You know, I had the same rules that she did, but her rules were a lot better than my rules had been at home. Like, we were able to go to concerts together. Like, I feel like I started to, like, have glimps of, like, oh, like, this is what Tandem could be like. Like, we're going to scar shows that these little grunge cigarette smoke felt, music halls in downtown Atlanta, and I just part of me was like, this is great. And a part of her is feeling guilty because Alan and Andrew are still in that house. At school, Andrew will barely even look at her. Allen at least doesn't understand that she's left. This is to both end of life. Now by taking care of herself, Gina has vacated the role of caregiver for her siblings and her mother, Diane. A role that was never supposed to be hers in the first place. She didn't apply for it. She didn't ask for it. Shes was thrown into it at age six. I felt like the more distance I gained from my Youll, the more I was moving towards the things I'd always feared. You know? Like, I was gaining independence and getting to know myself and taking care of myself, but the more independence I gained shes more I worried, like, oh, is Diane gonna succumb to her depression? And, you know, is Alan gonna hurt somebody in a really severe way. You know, is Andrew gonna be protected? So I feel like there was always this, like, push pull in my mind. Where I still felt very tied to them. But I knew I didn't really wanna see my mom anymore. From the moment I moved out, I didn't really wanna have a relationship with her anymore. And I think, honestly, that started like, my separation from her, my detachment from her started, like, when I was 6 and when she first said she wanted to die. I think there was a part of me that like, okay. Well, almost like I started grieving her at that point. So, like, I felt worried about her physical safety and her depression, but I didn't miss her because I don't think I ever felt like she was my mom, you know? I've said it before. I'll say it again. I'll say it a million times if I had do grief needs a rebrand, something like grief. So much more than just death. Because there is so much grief in Gina's story and so much loss. It's the divorce. It's her mother's depression. It's knowing her brother who hurts her, doesn't want to hurt her. It's leaving her family home and moving in with her friend's family. It's going to college and not having her own mother there to move her in. Because Gina does get where her high school therapist told her she could get. She gets out of that house. She gets to college. And now, she's a hundred miles away from her mom. We talked occasionally, like, on school breaks and college. Like, I would stop by and see everybody. And so I I feel like we kind of had a a surface level relationship. But she called me desperate one time because he had been placed in a group home and she kind of thought, like, okay. Like, he's gonna be taken care of and he was kicked out. Like, within gosh, I wanna say within a few weeks. And she suddenly had no other options for him. So she called me at college and asked me to take time off school, to so she called me at college. And asked me to take time off of school, to drop out temporarily and come home, and care for him. And she offered to pay me, which was kind of ridiculous because I don't think she even really have the money to do And she offered to pay me, which was kinda Youll. I don't think she even really have the money to do that. But I just remember, like, feeling like, I was at a point where I'd been away from home enough time that I had let my guard down. You know, like, I wasn't that vigilant anymore and I knew like, was living my best life. Like, I loved college. Like, the freedom, like, all of it. It felt like shes phone call kinda sideswiped me. And I was like, Oh, like, if I say no to this, what's going to me and I was like, Like, if I say no to this, what's gonna happen? What's gonna happen to Allen? What's gonna happen her. Like I was like all of that old familiar obligation and fear that I had for them just came flooding her? Like, it was, like, all that old familiar obligation. And fear that I had for them just came flooding back. And I remember, like, getting off the phone with her as quickly as could. And I actually looked up the number and called that same therapist that I saw in high and I actually looked up the number and called that same therapist that I saw in high school. And I was like, I don't know, like, what do I do? What do I do? And she was like, can you say no? Youll say no. It's that Youll. Like being asked, don't you want somebody to take care of you? You just say no. Ginas, says no. She doesn't move back home to take care of Ellen and that no. That now opens up a whole world of possibilities for Gina. Gina's mom ends up getting remarried. Alan is moved into another group home. Gina stays in college and she falls in love. So he and I both moved to Colorado and got married out here, and then Alan got kicked out again. From group home. And so in looking around at options, my mom saw a lot of opportunities in Colorado near where my husband and I were living. Older has amazing resources. Like, to this day, like, they have some of the best resources for special needs families. Some of the best group homes, some of the best day programs and, like, respite care and stuff like that. It's really robust program. So they moved up to Colorado, which happened to put them close to me and my husband. So at that point, we did see them I was really happy to be able to see Alan a lot more, but it came with, you know, kind of the weight of seen my mom who was definitely like healthier than when I was a kid, but still was suffering with a lot of depression. Ginas is a married adult. She has her own family. She's changed a lot since that six year old who found her mother crying on kitchen floor begging for life to be over. But not everything has changed. Not even when Alan gets his diagnosis. PraderWilli is rare and even today is not always diagnosed in childhood. Learning about it. Did make it possible for Gina to understand more about what Alan was going did make it possible for Gina to understand more about what Allan was going through. And when Gina got the science of it and got her own genetic testing, it made her more relieved. It validated a lot of what they knew about Allen and what could help him be safe and happy. But a diagnosis could not replace all those years that Ginas was taking care of Alan and didn't know what he needed. It couldn't take him back in time and give him a better transition to adulthood. Even if it could have done any of that, Ginas believes it would out of change things for her because of the caretaking role she had in her Youll. And when the diagnosis did come, It did not improve Gina's relationship with her mom. The dynamic for me didn't feel all that much different. Like, I we would go over and visit and, you know, she would tell me all of her problems, she would, you know, try to lean on me, emotionally around Alan and how depressed and isolated she felt with him, she would, you know, ask us to take care of Alan, which at that point with my husband's Like, we actually did that quite a bit. Like, we would take Allan on hikes or to the movies, you know, we would take him on outings because we really enjoyed that. But, you know, he still had all the obsessive food seeking behavior. He still had a lot of medical things you know, that made it really difficult. What was he like as an Youll? Honestly, he was a lot like he was as a kid. And that was like one of my favorite things about him is he just had that, like, wide eyed joy of a little kid who still believes in Santa and still lives for Christmas, like, to the point where, you know, he was listening to Christmas music in the heat of summer. He was making his lists, you know, year round. He was still watching movies over and over and over again and reacting to them as if he'd never seen them before. So there's still kind of that unbridled joy But he also, like, as an adult, I felt like, was a little more subdued. Like, once think they found out that it was PraderWilli syndrome and they understood some of the mechanisms behind his behaviors and he started taking different medications. That had kind of a sedative effect. And so there would be times that my husband and I would go over there and he would be kind of sitting off by himself and not very responsive because he had just taken a dose. My mother had just given him a dose of medication. So I feel like it smoothed at the edges. Like he was a lot less he was a lot less violent. His mood swings were a lot more even, but then the downside is is kinda took a little bit of a spark away too. Gina isn't solely responsible for Allan's care anymore. But the issue of his care still weighs heavy on her. Ellen is her big brother. She loves him. She wants to make sure he's okay no matter what. She's been waiting for her mom to make a plan for Ellen, for how Ellen would be cared for in the event of their parents' death. I assumed that he would outlive hereRead I knew from having grown up, like, I knew that I couldn't do it. Like, especially after I had kids. Like, I knew that I was not willing to have him come live with me and to take care of him. Like I couldn't handle it myself, Like, I couldn't handle it myself honestly. And then I didn't want to expose my kids to the violence and to the, you know, like my mom had to like lock all of her cabinets in her And then I didn't wanna expose my kids to the violence and to shes, you know, like, my mom had to, like, lock all of her cabinets and her refrigerator, like, there was just a line for me where I was like, I'm not going back. Like, I'm not going back to taking care of him. And I remember telling her that but she didn't have a plan. And the last group home that he was in was actually like a situation that would have worked for him long term. It was the first group home that was designed specifically for people with PraderWilli or other food shes, and they could handle even the behavior stuff. And he was there for like a trial period, I remember. And I remember feeling like such relief. Like, it was a group home that was also like a working ranch so there were animals. So he was busy and he had stuff to do with the animals which he loved. And he liked the social aspect and all that. It's the absolute perfect place for Allan, and he's happy there. And Ginas has a small sense of relief. And then, for some reason, like, within a few days of the trial period being over with, my mom withdrew him from the group home and said that it wasn't a good fit for him. And for me, that was like the breaking point where I was like, I can't I cannot be in relationship with her anymore. Like I just, cause there was no plan and she is fully Like, I just because there was no plan. And she fully expected, I think, either my younger brother or me to take care of Allan or she was gonna let him just become awarded TTFA. And that was Too painful for me? This is just a continuation of the confusing relationship has had with her mother, Diane. There's the appearance, the formal living room, the makeup when dad got home from work, the need for other people to think things are okay when they're not. And then there's the reality. Throughout their childhood, Gina would hear her mother saying it was too much she needed help. And here is help the right help for Allan, and she turns it down. So this is the end of Ginas pursuing a relationship with Diane. And that complicated things because I did wanna have contact with Allan. It was a bit of an orchestration, like, to try like, arrange to take Alan out or to visit him but not have to see her. But I would send them letters and he would draw me pictures and I would try to call at times when I knew Diane was at home so that I could talk to him, you know, if Alan had a medical problem, she would send like a group email to me and my brother and my dad. And a few other family members. And so, like, I kind of saw that he had had some medical things over the years, but I never in my mind, he wasn't fragile. And think partly he wasn't fragile because, you know, he was like, I don't know, six two and, like, two hundred and fifty pounds. Like, he was not a fragile person. So in my mind, I didn't think I didn't have any reason to think that he was gonna young. And then Ginas is heading off on vacation with some friends. And when the plane lands, she turns her phone on. And she finds out that Alan is dead. And the cause isn't a hundred percent clear. He had what appeared to be either an asthma attack or an allergic reaction that resulted in cardiac arrest. He was forty three years old. Any kind of loss, like the people closest to you, I think, why to make meaning of it for Youll. You know? Like they want to classify it some way or like makes sense of it at some Like, they want to classify it some way or, like, make sense of it some way. And so I think Youll I felt misunderstood because I think a lot of people close to me were just rushing to, like, make meaning of it for me. Like, oh, aren't you relieved? If, like, you've been relieved of this burden, you're not gonna have to take care of him or, you know, maybe that I was coming out from like, the shadows of abuse in some way, which also didn't feel right because that didn't that just didn't ring true. But I think, like, what I wanted them to understand and what I want people to understand is how deeply you can love somebody who has also caused you this much pain. I think a lot of people thought I would feel relief with him gone. Because I was relieved of the burden of having to take care of him. Objectively speaking, and my my abuser died. Youll know, he he caused a lot of harm to my body, but it didn't feel that way. There was no relief. I just felt really sad like immediately, unmistakably, sad. And then other piece of it was I felt like we'd run out of time. Like, I think there was a part of me that thought that maybe someday, like, he and I will figure out what we meant to each other and, like, think I had a little bit of magical thinking, like, oh, you know, someday we're gonna sit down and we're gonna, like, talk about our shitty childhood and, like, in what we mean to each other, even though, like, I knew intellectually he wasn't capable of that. And so, like, I'm left to decide what we meant to each other. And a lot of my grief has been untangling that question of what did I lose? Like, when Allan died, what did I lose? What do you think he meant to each other? I know without a doubt that as much as Alan was capable of feeling love, he loved me. I know that he thought about me. I know that he asked about me. I know he loved my kids. He he got to spend some time with my kids. That was always a little complicated because I would never leave my kids alone with him because I didn't know if he was safe, but he loved babies and kids, and I saw the joy on his face. So I do feel like he genuinely loves me. And I almost feel like In a way, it's probably the closest thing that I ever had to unconditional love because I don't know that he was somebody who ever, like, helped grudges or I don't know. There were, like, the things that you have in your normal sibling relationships where there's baggage and, like, ambivalence or sibling rivalry, like, I think it was just a very, like, pure love. You know? So from him to me, I feel like it was very simple. Love. And then from me to him, I think that that's where it feels a lot more complex because I I loved him, but I also was terrified of him. I always, like, had this weird mix of, like, gratitude and guilt, like, I'm an able-bodied person So I think I was always really aware of how lucky I was that, like, I could do things that he couldn't. You know, I could drive a car. I could go to college, I could get married, like all these things he couldn't do. I felt very grateful, and then I also felt really guilty about it. Like, why doesn't Allen get to do all those things? You know, like there's all these aspects of life that he didn't get to experience and don't know if he felt that loss ever. Grief sometimes brings out the worst in us and the worst in our relationships. And almost immediately after Alan's death when Gina's family gathered together. I remember feeling like a lot of fear oh my gosh. I'm slipping back into this orbit that I don't wanna be in. I mean, at one point, we were all gathered at my mom's house. And everybody was kind of playing their historic roles and the funeral hadn't been planned yet. And at one point, my dad was like, can you go talk to your mother? And I said, no. I said, I can't. I can't do it. And in my mind, I was like, I'm not gonna do this anymore. Like, I'm not gonna parent for you. And I remember, like, I got physically ill. Like, I walked out of the house and I threw up. And I feel like, at that point, I was like, I just I'm done. Like, this is not the life. This is not my role. And thank goodness. Somebody did step in. I think they had a minister who came in and basically like mediated and sat down and planned the funeral with think they had a minister who came in and basically, like, mediated and sat down and planned the funeral with them. It's August in Colorado. And Gina gets ready to say goodbye to her big brother at a Christmas themed funeral. And I remember, like, walking and, like, opening up one of those. It was like a Lutheran Church with one of those huge, heavy, red doors that I feel like every Lutheran Church shes. And I just remember like this flood of air conditioning hitting me. And then the sound of Christmas Youll. And it was just like so appropriate for Allan. And I don't know that they told everybody that it was gonna be a Christmas themed funeral because I remember, like, looking at people's faces when they walked in and, like, hearing all Christmas Youll and I might be making this up, but I feel like there was, like, poinsettias. There's, like, something. Like, I feel like there was red flowers. Like, I felt like it was, like, they really took the theme and ran with it. There's a lot of pictures of Allen. Like, there's a, you know, a table with bunch of pictures of him, including a lot of pictures of, like, him seeing Santa, like, which is something he did. Well into adulthood. So it felt like at any end even though it was a lot of like heartache to get there. It felt appropriate for him. It honored him and it honored honored him, and it honored her. The funeral got planned without Gina taking on her old role. Ginas didn't have to be the parent, the pastor, she just got to be a grieving sister. And all of those nails moving out, not coming home from college, not planning the funeral. They've been big moments for Gina. But those big moments aren't done for her. Spending so many years, taking care of other people means that Gina still needs to learn how to take care of herself, how to acknowledge and honor what she longterm, and what she needs. I see my kids And the way they move through the world and they're just not afraid, and they know that they don't have to take care of me. I get a lot of joy out of watching them have the childhood that I wish that I had had, you know, and the sibling relationship that I wish I could have had with Allan. But the flipside is if I think, oh, like, I was that Youll. Like, I was as vulnerable as my ten year old son is. And This is what I was doing. I was cooking dinner. And when I was twelve, I was shipping in my babysitting money to help pay the electric bill and, like, the one thing that I still struggle with, like, right now to this day is identifying what I need, whether it's, like, Youll my husband asking me like, hey, what do you want for dinner tonight? Like, my mind will go blank. Like, it's kinda eerie how it just almost like Do I need food? I'm I wasn't even aware that I was hungry. Like one thing that was interesting is Alan had this insatiable appetite and sought food and I am somebody who am not always aware that I'm hungry. Until I'm like hangry, you know, until I'm like shaking. it. And then I think that's a carry over from, from And I think that's a carryover from that. But I think honestly, like, the more that I, like, watch my kids, like, have a need and express it and ask, you know, like, It's like this phenomenon and I'm like, wow, that's really that's really cool. How do you do that? This has been Terrible Thanks For Asking I'm Nora McInerny we talked a lot about the syndrome Alan had is called Prater Willi has been terrible. Thanks for asking. I'm Norma. F journey. We talked a lot about the syndrome Alan had. It's called PraderWilli Syndrome, and we learned there are different kinds of Prater Willie We learn that some people say PraderWilli, and some people say Prater Willie. Okay? Another thing is that even with a diagnosis, sometimes the health problems associated with it are found later than would be ideal. You might know that already if you have someone with Prater willing in your life. But if you don't, and you're curious, you can hit up the PraderWilli Syndrome Association or shes for Prater Willie Research. Also, where public media APM stands for American, public media, Publick, who's the public? You're the public. What are nice shit? Who's the public? You're the public. Who's the public? You're the public. We have gotten support from so many people over the years. We've been doing this for We've been doing this for years. So I just wanna write. I'm just, you know, these are just some, thank Youll, these are just some thank you. There's a thank Youll. To Samantha Cantrell who supported our show because she also longterm husband to Gleeoblastoma, which is the worst, and her husband Matthew Shes wrote to us and said he was larger than life. He kept me laughing and I will always love him. And her counselor recommended TTFA as a resource that might her counselor recommended TTFA as a resource that might help and she was right. Thank you, Samantha. We got support from Kaylee Sadler, possibly Carly, but if I'm doing my best here, Shes supported our podcast because it brings so many great and wonderful things into this world, a sense of solidarity for many that struggled to find compassion elsewhere in life. A better understanding of an empathy for those walking and path far different from our own space to feel allowed and accepted exactly as we are. And most especially love. Thank you, Cali. Cali, Cali, or Cali. It could be any. Also, Tory Scholl, Thank you so much. Tori said this podcast has fundamentally changed her relationship with grief and grieving, and she's a better person for hearing these stories and expanding her understanding of the human experience. I'm literally just reading compliments to the show. Okay? Deal with it. Thank you. And Holly Mitchell, who has been listening for years now, has heard every episode and thought is about darn time. She contributes something toward a project. I support and feel passionate about Thank you so much, Holly. We appreciate you. We all appreciate you here at team. TTFA where our production team includes TTFA, where our production team includes myself. Marcel Malekivu, Jacob Maldonado, Medina, Jordan Turgeon, Phyllis Fletcher, who is so wonderful. Hannah, me Coq Ross and our theme music by Jeffrey Lamar, Hannah Mika Cross, and Artheem music by Adfree Lamar Wilson. We I don't know. We just we just appreciate. Yeah. We just appreciate you. We appreciate you. By the way, if you want to support our show, you can go to TTFA dot or there's a donate button. By the way, you're supporting shes show just by listening to it. No pressure. Literally, the world's who are salesperson here to tell Youll, just support our short, or don't, like, either one is fine. But the membership person, I know John is listening to this being like, God, no worry. Why do you have to make this so hard? I do make everything hard, John. Okay? You can contact my therapist, Alan. If you want more information, he won't give it to you because he believes in privacy. What a guy? What a guy? Oh, boy. Anyway, speaking of care, I'm gonna take care of myself. And step away from a computer, get out of this closet, stand up straight, drink a glass of water. What else do I have to do? I cannot wait to fall asleep face down tonight. Face down. Oh, I got like a hibernating frog just like bury me in the mud. But the mud is my comfortable bed. And just I don't even need to breathe that night. I literally sleep face down in a mattress pillow over my head, like, turned me off for the night. Sleeping is so bizarre. Like, just truly at night. We just turn we just turn off. It's been just so funny to Youll, thinking about at night, everyone in your neighborhood turning off for the night, and then turning back on in the morning. It's so cute. Humans are so cute in that way. Also, if there's ever someone that you like really just like just imagine them like sleeping and you'll be like, oh, You're just like a you're just like a gentle little person. You also have to shut off at night. Oh, okay. Well, this has been this has been this has been a thing and and good good night.