Kourtney Loses Her Sister To Rett Syndrome

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[00:00:00] Kourtney Ep- maya view: Hey guys, welcome back to the surviving siblings podcast today. I have, of course, another incredible surviving sibling with me. Her name is Courtney Courtney. Welcome to the show.
[00:00:12] Kourtney Ep- Kourtney View: Thank you so much, Maya. I'm excited to be here.
[00:00:15] Kourtney Ep- maya view: I'm excited to have you too. And like I say on every episode excited, but of course it's bittersweet how we all meet each other, but. I'm really interested in telling your story, hearing more about your story, and your sister, Christy, because it's a story of losing your sister, but it's also a story of kind of this lifelong journey that Christy went on, and you're active in this community, too.
[00:00:42] Kourtney Ep- maya view: So, I'm just going to dive right in here, Courtney. Tell us a little bit about Your sister, your relationship, your family dynamics. And again, we're going to talk about some pretty interesting topics today.
[00:00:55] Kourtney Ep- Kourtney View: Okay, so there are five of us in our family. I am the baby. Um, Christy was [00:01:00] the middle child there. Like I said, my, and my brothers and sisters are all really close in age to each other. Um, I was seven years behind everybody else. Um, they are all seven to 13 years older than me. So I was kind of the oops baby.
[00:01:14] Kourtney Ep- Kourtney View: Um, but. So I was born into our family and Christy was already, um, having issues. Christy was born with Rett syndrome, which is a rare neurological disorder that affects mostly girls. There are boys that have Rett syndrome, but it is affecting mostly girls. And what happens is the girls are, and boys are normally, Born typical, so 10 toes, 10 fingers, healthy, everything like that.
[00:01:40] Kourtney Ep- Kourtney View: And then between the ages of 6 and 18 months, they lose all their skills. Um, it was not actually diagnosed in the United States until 1986 for the first time.
[00:01:51] Kourtney Ep- maya view: Wow.
[00:01:52] Kourtney Ep- Kourtney View: Um, so we actually did not know what Christie had for the first 21 years of her life. Um, and back in. [00:02:00] when she was born in 1965, they didn't have the programs and stuff like she had.
[00:02:05] Kourtney Ep- Kourtney View: So she was actually already in a group home because that was what my parents were told was put her in a home and kind of forget about her, which my parents didn't. But, um, She was already in a home by the time I was born. So I grew up not knowing a life different than I had a sister who didn't live at home.
[00:02:26] Kourtney Ep- Kourtney View: Um, I was actually baptized at her home because my mom was pregnant with me. So the kids would run up and, you know, we'll come up to her and touch her belly and stuff. So my parents actually had me baptized at her home. so again, I didn't, know any differently. Christy was a part of our life. I knew I had the sister who didn't talk.
[00:02:47] Kourtney Ep- Kourtney View: Um, she had seizures. Um, she never, she always clasped her hands, which is very, um, common. There's always some kind of a stereopathy with the hands, um, with our girls. And [00:03:00] that was just life. That was who we were. Um, my brother and sister who were older than Christy went through the regression. They saw the regression.
[00:03:10] Kourtney Ep- Kourtney View: They saw her, um, you know, lose her skills and stuff like that. And then the one who was born right after her, um, was the one she saw, like, when everything was going on with the seizures, when the seizures really started very badly. So, again, it was just kind of something I grew into. The big joke was the first day of kindergarten was the day that I realized my family wasn't normal.
[00:03:33] Kourtney Ep- Kourtney View: Um, because we were sitting in circle time as you know, you do in kindergarten and you know, the teacher was Mrs. Julius, I'll never forget her said, Oh, well, you know, let's talk about our families and I'm Barnum. So I, you know, well, I have five brothers and sisters and I, or, you know, I have a sister who doesn't live at home and she doesn't talk and she sometimes doesn't walk and she has really bad shaky seizures.
[00:03:55] Kourtney Ep- Kourtney View: And my, everybody else went and nobody else talked about their sister that. Was like this [00:04:00] and I was like, wait, wait a second. Um, Okay, and so I looked at my teacher and I'm like, you know, and she's like well honey your family special, you know You have a sister who has special needs or disability And so I went home and I got off the bus and I said, okay mommy We have to go pick up Christie and she said why do we have to go pick up Christie?
[00:04:22] Kourtney Ep- Kourtney View: I said I'm gonna take her for show and tell tomorrow
[00:04:24] Kourtney Ep- maya view: Oh my gosh.
[00:04:26] Kourtney Ep- Kourtney View: And my mother said, we're not taking your sister to school for show and tell. Um, but that was kind of the day that I realized. This was not normal. This was not how life was supposed to be. Um, and we, I would, I was always at, how do I even explain it? I was always with Christy, even though she didn't live at home because I was so much younger than everybody else.
[00:04:50] Kourtney Ep- Kourtney View: I was always the one going to the doctor's appointments with my mom when she, you know, because she would still go to doctor's appointments and do all that stuff with Christy when the home, when the when she needed to. Um, so I was the [00:05:00] one who would go with her. I would go when Christy got, we moved her actually to a home that was a little bit farther from our house because of
[00:05:10] Kourtney Ep- Kourtney View: necessity, necessity. Um, it was a better home for Christy. It had more options. It had more, um, staff and better, you know, better things for her. Um, we were up there every other weekend. Like it was, So, I don't know, I didn't know a life without my sister who was special. Um, we did not know she was considered severely, profoundly mentally retarded with a severe seizure disorder was her diagnosis.
[00:05:37] Kourtney Ep- Kourtney View: Um, and then in, well, let's see, we. Went through life with her, um, at when she turned 18, this is a completely inappropriate story, but it's funny as all get out. We all my mom made sure all the kids were to go to her to go see her for her 18th birthday. By this time, my parents had divorced [00:06:00] and so we go up there and there's 4 girls and 1 boy and my brother loves to tease the daylights out of us.
[00:06:06] Kourtney Ep- Kourtney View: Um, if he's not teasing you, yeah, um, he's. You know, something's wrong. So we're at the restaurant. We have finished dinner. We're eating ice cream and my brother looks at Christine. He's like, okay, you're 18 years old. It's time to get off the drugs, get off of, you know, the government assistance, stop relying on mom and dad and get a fricking job.
[00:06:26] Kourtney Ep- maya view: Oh my gosh.
[00:06:28] Kourtney Ep- Kourtney View: And everybody in the restaurant, because they can't see Christy at this point, are looking at us like we are the devil. And my, my sister is sitting there laughing hysterically. And that was when I was like, wait a second, Christy's in there. Like she understands because all I had heard was that she was like a baby and that she didn't understand.
[00:06:53] Kourtney Ep- Kourtney View: And that she was like a nine to 12 month old. And I'm like, babies don't. laugh at
[00:06:58] Kourtney Ep- maya view: at that joke.
[00:06:59] Kourtney Ep- Kourtney View: she was [00:07:00] laughing. Um, you know, but there was also the, I was scared to death of my 10th birthday. I didn't want my 10th birthday. Christy was born July 15th. I was born August 3rd. So we were, our birthdays were close to each other, but I had heard my whole life growing up that she was going to die by her 20th birthday. And so I didn't want my 10th birthday to come. I didn't want to celebrate because Christy was going to be dead. Um, so it was, you There was always this, I don't even know how to describe it. We all adored Christy. All, all the siblings adored Christy. Um, I will, I will say it. I was the one who we had such, we had this relationship that I can't describe.
[00:07:45] Kourtney Ep- Kourtney View: We never spoke a word. But I could understand everything she was saying. I understood what she needed. Like we were always just, she made me feel like I was the best person in the world, no matter what. [00:08:00] Um, and so, yeah, I fast forward. I went to school. I wanted to be a speech therapist because I wanted to work with kids who couldn't talk.
[00:08:10] Kourtney Ep- Kourtney View: I wanted to work with devices and stuff like that. Um, ended up not doing that because. They don't do devices until later. So I got my teaching degree and taught special ed in, you know, in, in with Christie in my head at all times going,
[00:08:27] Kourtney Ep- maya view: How could this not be your inspiration? Of course. Yeah.
[00:08:31] Kourtney Ep- Kourtney View: if somebody would have taught her, if somebody would have, you know, done something with her.
[00:08:39] Kourtney Ep- Kourtney View: What, where would she be? So that was my attitude. Um, and then now I actually work with girls with Rhett and teach them. So, um, but. Yeah, and she We got her diagnosis when she was 21. Um, her neurologist who [00:09:00] followed her, we actually stayed in touch with him until the day he died when he was in his nineties.
[00:09:05] Kourtney Ep- Kourtney View: Um, he was the one who went to a conference over in Europe and there was a man standing there with a girl that could have been Christie's spitting image with the same mannerisms and stuff. And he walked up to him and he was like, Sir, I need to ask you, you know, what is your daughter? What does she have?
[00:09:23] Kourtney Ep- Kourtney View: And the guy actually was Andreas Rett, which is the doctor who wrote Um, discovered Rett syndrome and he said, well, she has Rett syndrome and we're introducing it today. And so Dr. Ivan called us and he said, Hey, you know, I know what Christie has and we're like, what do you mean? And he's like, she has Rett syndrome.
[00:09:38] Kourtney Ep- Kourtney View: We're like, okay, what does that mean? He goes, I don't know, but we have a name for it. So we got the diagnosis of Rett syndrome when she was 21 and it was, um, confirmed in 99 when they found the genetic, um, it's an, it's an, it's a genetic, I'm sorry, it's an actual genetic mutation, um, on a protein, um, of the MEKP2 gene.
[00:09:57] Kourtney Ep- Kourtney View: And so they were able to figure out [00:10:00] where this mutation is. And so in 1999, they, we got confirmation that that was what she had, which it was obvious, but yeah, so.
[00:10:09] Kourtney Ep- maya view: Wow, that's quite a story. Okay, Courtney, let's unpack this a little bit. So, so Dr. Rett, who is like the founder, I mean, obviously we don't create these things, but he's the one that discovered what Rett syndrome is. He had a daughter that had Rett
[00:10:24] Kourtney Ep- Kourtney View: No, it was his patient. Actually, I'm sorry. I forgot to. It was his patient and he was introducing Brett syndrome that day
[00:10:30] Kourtney Ep- maya view: that conference.
[00:10:31] Kourtney Ep- Kourtney View: at the conference and Dr. I've been just happened to be there.
[00:10:35] Kourtney Ep- maya view: Meant to be. Meant to be. It's like in these, in these stories, I always have chill moments. That's a chill moment. And wow. So. That's so fascinating. So again, you, you made it to your 10th birthday. So you were good. So when you were 11 and she was 21, 20, can you imagine 21 years? Wow. And just not knowing or being, I mean, [00:11:00] honestly being misdiagnosed because of not having that knowledge.
[00:11:04] Kourtney Ep- maya view: So how, how did things change? Um, For you guys, for you, for Christy, once having that, I'm sure there were so many emotions, like, Oh my gosh, like, relief because there's a name for this, like, it, we, there's an understanding about it. But also, I'm sure there's that frustration. I'm sure there's so many emotions going on when that happened, right?
[00:11:24] Kourtney Ep- Kourtney View: there definitely was. Um, I think once we passed 20 and she survived and she wasn't dead, we decided we were going to, I've never trusted doctors. I'm going to be very honest. And now I really like after that, I'm like, I don't listen to doctors because, because we were always fighting for with, with doctors about ret and what was going on and everything, especially as she got older too, because again, there wasn't a lot of, we, we were in a chasm when she was little.
[00:11:53] Kourtney Ep- Kourtney View: And we were in a chasm when she was older because we didn't have many girls who survived when she did. [00:12:00] She actually survived with Rett Syndrome until she was 51, which was very, um, unheard of. When we would go to places, people be like, Oh my God, she's 50. Wait, she's 50. Holy shit. I'm like, yeah, she's 50. Um, so it changed things in that we finally had other people we could talk to.
[00:12:19] Kourtney Ep- Kourtney View: Um, we, I met my first other rep family when I was in my twenties, which it was so amazing to meet somebody else who understood, because we, I would go and talk to other siblings who had, you know, down syndrome or, you know, not even autism really at that point, but just like down syndrome or other things.
[00:12:40] Kourtney Ep- Kourtney View: It was different. It was, You know, there was some little, you know, there was some similarities, but there was also a lot of differences, so it was so nice to have other families who understood. Rett and this world that we're living in, cause it really is one of the biggest things with Rett syndrome. And I'm going to [00:13:00] say this really loud is our girls, our girls and boys are in there.
[00:13:04] Kourtney Ep- Kourtney View: They are literally trapped in their bodies. And so they have not, we, Everybody always assumed that it was an intellectual disability. And what we are finding is that it is not an intellectual disability. It is a neurological and physical disability, but there's that assumption. And so to meet other families that understood that, wait a second, these girls are in here and they're really funny and they're really goofy and they're really sarcastic and feisty and everything else was amazing.
[00:13:34] Kourtney Ep- Kourtney View: Um, I was in my late 20s when I got to meet another sib who had a sister that was, you know, that that was, she, the sister who was typical was my age and it was like, oh, my God, to be able to talk to somebody else.
[00:13:48] Kourtney Ep- maya view: a moment. Yeah.
[00:13:49] Kourtney Ep- Kourtney View: yeah. Um, and so, yeah, it, you know, It just kind of evolved and now, like, it has completely, there's so much, [00:14:00] God, there's so much change and growth in the area of Rett with medication and, um, like I said, in 99, they figured out the gene in 2007.
[00:14:12] Kourtney Ep- Kourtney View: They actually reversed it in mice models. Um, and then we just last year, they released the first treatment, um, for Rett syndrome. It's not a cure, but it's a treatment and they're actually in trials for genetic. Um, I don't want to mess it up, but actual like genetic changing the genetics and, and possibly reversing most of the effects of Rett syndrome.
[00:14:37] Kourtney Ep- maya view: Wow. This is what a time to be talking about this. Courtney. Oh my gosh, right? It's like right on time that we're talking about this like it's a perfect I mean, obviously anything anything like rett syndrome or anything that you guys have gone through There's always a time and a place to talk about it.
[00:14:51] Kourtney Ep- maya view: But like this feels like it's having a moment. It's like, okay We're finally making some progress and i'm sure you know you being in In the field and working [00:15:00] with this. It must be so amazing to watch that and like honor your sister with, which of course we're going to continue to talk about. Um, so, but I'm curious too, with, with Christie.
[00:15:08] Kourtney Ep- maya view: So when she got the diagnosis and there was like, again, I get, I get everything that you're saying though, too, because you're kind of, you know, I'm sure you were just kind of thrown into like this world where all these different, you know, siblings that, you know, they were like, okay, if you have X, Y, Z, all of you guys can relate.
[00:15:26] Kourtney Ep- maya view: And that's not the case. I think you make a really great point with that because there's different challenges with different, you know, things that you go through, right? And I think. What a moment when they realized, you know, Rett syndrome, there's, it's neurological, it's very physical, but I guess a question, I have so many questions for you, but one question I would ask is, does it mean that, you know, They were telling you guys that she was like a baby, basically, a child, but her brain and her, like, was maturing the whole time, so that was really inaccurate.
[00:15:58] Kourtney Ep- maya view: So that's a big fact, I think, [00:16:00] to know about Rett syndrome, is while there's a lot of physical and, you know, and neurological things happening that I'm sure are so challenging and heartbreaking to watch, they are maturing mentally, and,
[00:16:14] Kourtney Ep- Kourtney View: They're taking in everything that goes on around them. Um, they are, the, with the girls and boys I work with now, like I said, I actually teach. Um, I work with, I do private clients and I teach them how to communicate using an eye gaze device. Um, they use their eyes to talk and I am teaching my girls how to read and write.
[00:16:35] Kourtney Ep- Kourtney View: And they are, um, I have a, we have a young lady who's on our client list, um, who, um, Passed the reading test in Texas. Um, I have girls sitting in regular ed classrooms learning and growing. Um, and yeah, it's really amazing. Cause you know, everybody discounts them because they're in a wheelchair and their hands don't, you know, their hands and their mouth do not work.
[00:16:57] Kourtney Ep- Kourtney View: So there is no [00:17:00] intelligence test that is even valid for our girls and boys. And so when people are like, Oh, they're intellectually disabled. I'm like, Oh, and what test did you use? Because there is no test. So yeah, it's, it's really, like I said, Christy would, Christy was my, my person. She was my, my everything.
[00:17:21] Kourtney Ep- Kourtney View: Um, I adored, I adore her to this day. She was, she was my person. If she didn't like you, you were out of my life. Literally, because she could pick up on those things. I did not listen one time. That would be my ex husband.
[00:17:38] Kourtney Ep- maya view: Sorry, Christy!
[00:17:40] Kourtney Ep- Kourtney View: Well, the best part was she got to be in my wedding and she had an absolute blast being in my wedding and everything. But um, yeah, she never liked him and gave him dirty looks. During the whole wedding, but yeah, she did not like, but Christy was my person and I started, um, I, so I [00:18:00] started taking, helping my mom with caregiving and going to her meetings and going to the doctor's appointments.
[00:18:05] Kourtney Ep- Kourtney View: Um, cause my mom was getting older and had health problems herself. Um, when I was 21, I started doing all the, um, Like I said, meetings for her home, going to doctor's appointments, hospital stays. Um, I did all of that stuff. So I wasn't just her sister. I was also her caregiver, um, which changed the dynamics between.
[00:18:34] Kourtney Ep- Kourtney View: Myself, my siblings, my, my mom, um, so it, there was a lot of dynamics going on in, in that respect too.
[00:18:42] Kourtney Ep- maya view: Yeah. I'm really glad you touched on this because I wanted to, to shift into this as well. Perfect timing. So yeah, I'm sure that changed so much because you're from a big family, you know, five is, is considered big. I'm from four. That's considered big now. People are like, oh my gosh, you want more than one or two kids?
[00:18:58] Kourtney Ep- maya view: It's like, you know, that was kind of [00:19:00] normal, you know, like, but Now it's a big family, and so there's just so many dynamics between siblings, and so that's one thing that stands out to me in your story and your relationship with Christy is that you, I understand why you are like, this is my person, you feel so close to her, because you also have this dynamic of being a caregiver, and I think that Shifts so much and so many stories that I've heard about that.
[00:19:23] Kourtney Ep- maya view: So I'm really glad we're, we're chatting about that. And, you know, I think what kind of advice would you give to siblings listening to this Courtney about the, when you shift into kind of that caregiver role as we're kind of sharing this story, because I think, I think that's different, right? I think that's something that not all of us experience in the sibling loss journey.
[00:19:44] Kourtney Ep- maya view: And I think being a caregiver, it's. It's, it's a shift, so I'd love if you could kind of talk about that for a few moments if you don't mind and kind of give some advice and I think, you know, like we always say, hindsight's 20 20, so we can always look back and be like, I wish I did this or that, but [00:20:00] I feel like you're carrying her legacy so beautifully as well, but yeah, if you wouldn't mind touching on that, I think that'd be great.
[00:20:06] Kourtney Ep- Kourtney View: Um, my biggest advice would be to stand up for yourself and ask for, I never learned how to ask for help. It was not something that was part of our family dynamic. Um, we didn't ask for help. There was a lot of times my, how do I say this nicely? I love my siblings. I adore my siblings. Um, but there became a big divide between myself and my siblings because I was now Christy's caregiver and we moved her, like I was the one flying.
[00:20:38] Kourtney Ep- Kourtney View: When we, how I had to explain this, when we first moved to Florida, we actually kept Christy up in Ohio. Um, because of the fact that we moved down here, we went and looked at homes. I looked at my mother and I said, I would not put a dog in a home down here. like they were disgusting. Um, so we kept Christy up there and we did reverse.
[00:20:59] Kourtney Ep- Kourtney View: [00:21:00] Like we were up there all the time. My mom was flying up and then when I was old enough, I started doing the winter visits when my mom couldn't do them. So I was flying up there all the time to see Christie and I would see all my other siblings while I was up there. Um, once we moved Christie down here because, um, she, she came off of her seizure meds and she really understood what was going on and was having a really hard time being away from us.
[00:21:28] Kourtney Ep- Kourtney View: We moved her to a home down here. That was. Things have gotten a little bit better. Um, I was close enough that I was always there and I was the Betty sister who God forbid you messed with my sister. You were in big trouble. Um, so we moved her down here and they. Stopped seeing her, like they didn't come to Florida.
[00:21:48] Kourtney Ep- Kourtney View: We, once I moved, my parents moved us to, my mom and stepdad moved us to Florida. Um, there became a big chasm between them and me because I was kind of [00:22:00] down, you know. Oh, wait. I had a very different life. Um, so yeah, it, I never told them like how bad it was. My mother also had a mental illness, um, undiagnosed.
[00:22:14] Kourtney Ep- Kourtney View: So we didn't, like I said, we didn't talk about when things were hard or when things were, you know, so, and my mother never got along with all of us at the same time. So it made things
[00:22:26] Kourtney Ep- maya view: Oh, Courtney, you are preaching to the choir here. I get that it creates a lot of division. It creates, we could do a whole show on that, but it creates a lot of division. So you're giving great insight as to why this kind of evolved that way, and I, I connect with that personally. Um, those of you who have listened to my story know that too because again, when you have these kind of larger families and maybe a mother who's not functioning at a certain level with certain things emotionally, there's division can be.
[00:22:56] Kourtney Ep- maya view: A positive thing for them. It is never a positive thing because [00:23:00] then they're having relationships and whoever's kind of wanting to have the type of relationship that they want at that time. That's who they're engaging with. So I follow you, Courtney. Yeah, I get
[00:23:09] Kourtney Ep- Kourtney View: so, and it left a lot of taking care of Christie and going through the hard things by myself. Um, my mom used Christie as a pawn with us. Um, I'm going to be very honest. She used Christy as a pawn. So if I wasn't doing something she liked, she would threaten to take Christy. Like she would threaten to cut off my visits with Christy.
[00:23:29] Kourtney Ep- Kourtney View: Um, now mind you, I saw Christy, my mom and I took turns. We, I would go, I would go over to her home whenever I felt like it, just to say, hi, I'm here, are you taking care of my sister correctly? Um, but they, um, and then she would go home on the other weekend, she would go to my mom. So we, we kind of, you know.
[00:23:49] Kourtney Ep- Kourtney View: Um, but if I did something my mom didn't like, she would be like, okay, you can't see Christie this weekend. Um, to the point that I was getting a lawyer because my mom threatened because [00:24:00] my other sister Carrie, um, came down to visit and we didn't tell mom that she was coming. And so my mother threatened to stop.
[00:24:09] Kourtney Ep- Kourtney View: All contact with me with Christy and you can do whatever you want to me, but don't take my sister like she, but she was my girl. So, um, yeah, so it, it really created a lot of chasm. Um, and even when she died, and even still, there's, there's. I love them. They don't talk about Christy, which I want to talk about Christy, um, which I get.
[00:24:37] Kourtney Ep- Kourtney View: They're grieving in their own way. And I'm learning that now. Um, at first, I was very angry with them because, um, you know, they were like, Oh, you're, you were too involved. You couldn't. I'm like, well, who else was going to take care of her? Like, mom couldn't do it. Um, but now I'm realizing that that's their way of grieving.
[00:24:56] Kourtney Ep- Kourtney View: And, um, you know, that's okay. And there was a [00:25:00] reason that I was here and doing the things I needed to do by myself. So if that makes sense, like I'm, I'm learning how to grow from that.
[00:25:08] Kourtney Ep- maya view: Yeah, oh my gosh, Courtney, totally, I, it totally makes sense, and I, I share this a lot, too, that I was so angry and so judgmental of my other siblings, of two surviving sisters, and judgmental of both of my parents, and then anybody else, you know, that I thought should be grieving a certain way, and, you know, I, I I'm sure you would agree.
[00:25:30] Kourtney Ep- maya view: I don't believe that time heals all wounds, but I do believe that time helps you heal and what it's different. People are like, Oh, that's semantics. I'm like, it's not because time helps you learn how to grieve and it helps you kind of step back a little bit and go, Okay, I need to not be misjudgy over here, and realize that they're grieving in their own way, and as long as it's not unhealthy, I have to respect that, and if they're on a totally different timeline than me, or this is, they, they grieve by not [00:26:00] talking about it, but in the throes of it, and when you're super close to that sibling, you're like, everybody should feel exactly how I feel, and why are you not processing this like me?
[00:26:10] Kourtney Ep- maya view: So, I get it, I totally get it, and I know a lot of you guys listening get it too. Yeah,
[00:26:14] Kourtney Ep- Kourtney View: Well, and, and like I said, my mom played us against each other, so there was a lot of, um, a lot of that built into it. So like, for example, there was, there was a couple times that we've almost lost Christie. Um, in 2000, I'm looking at my, sorry, 2013. Um, we almost lost her. Like it was, it, it was bad. Um, and it was at Thanksgiving.
[00:26:43] Kourtney Ep- maya view: happening, Courtney? Was she having seizures? Like what, what was bringing up? Because she, she lived quite a long life, like you mentioned,
[00:26:50] Kourtney Ep- Kourtney View: she did,
[00:26:51] Kourtney Ep- maya view: looking at, looking at the life, the typical lifespan for Rett syndrome. Now, well, let's talk about that. Check off the list now that we know what the heck was going [00:27:00] on, right?
[00:27:00] Kourtney Ep- maya view: And then, then understanding what the typical lifespan is and understanding without having any like true medication or anything out that's now coming out. Thank goodness. But 51 is quite a long time to live as you're teaching me about this. But what, what ended up happening in 2013? And then of course we'll get into what actually happened.
[00:27:19] Kourtney Ep- maya view: And, but what happened that it was such a close call? What, what, what goes on? Yeah.
[00:27:24] Kourtney Ep- Kourtney View: she developed, um, she would have UTIs and she would have kidney stones on a pretty constant basis. Um, she was, she was mobile. Um, she would walk with assistance, um, especially at the end, but, you know, not getting enough fluid and things like that. She would end up with kidney stones. Um, she ended up being septic.
[00:27:42] Kourtney Ep- Kourtney View: Um, when I got to the hospital, um, that night, her blood pressure, I think was like 80 over 40. Like it was, and, and she was. She was non responsive. Um, it was the scariest and I was trying to, my mom [00:28:00] was driving up from, they were living in Punta Gorda at the time. Um. About 2 hours away, so I was trying to get to the hospital, be with, you know, make sure everything trying to answer questions for the doctors.
[00:28:11] Kourtney Ep- Kourtney View: Um. And in the meantime, this was over Thanksgiving week as well, too. This was kind of. Funny that, you know, as you'll hear later, Thanksgiving kind of is a suck time for me. Um. They, I was also graduating with my master's degree and my thesis was due right after Thanksgiving. And so I'm in the hospital trying to deal with.
[00:28:33] Kourtney Ep- Kourtney View: Christy and, and all of the drama and mom and everything else. And then, um, you know, and my sister possibly dying and then, oh, wait, I have a thesis that I've got to do. Cause I've got to graduate. So, um, they ended up putting a NG tube in her to help her, um, with her feeding, cause she wasn't, she wasn't eating or anything at that point.
[00:28:58] Kourtney Ep- Kourtney View: Um, which ended up [00:29:00] helping. But it caused a, again, a huge rift between myself and my mom. Um, things were already on the kind of outs, but that kind of cemented it because she had always told me that we wouldn't do anything. We had agreed that as a family, that if things happened, we would not do heroic measures that we wouldn't push Christie's body to the limits.
[00:29:23] Kourtney Ep- Kourtney View: Um, and so we decided we, you know, we were not going to do the tube, you know, that we were not going to the NG tube. Um, I had a prior commitment. That Friday that I couldn't like I would have lost a lot of money if I didn't go. Um, so I went and my mother proceeded to call all of my siblings and ask them what their opinion was on the NG tube.
[00:29:45] Kourtney Ep- Kourtney View: They all said, well, mom, if you think it's okay, you should do it. And so I came back to Christie with an NG tube in her, in her thing. Now, looking back, I'm thrilled because we got her, we, we had her for another 3 years, but it, it, it [00:30:00] It was one of those things where I called my siblings after that, and I said, Hey, hi, um, I'm the one who kind of deals with all this.
[00:30:10] Kourtney Ep- Kourtney View: You all are kind of Up there living your life and that's great. My sister, Carrie had come down to help. So I, I, you know, um, I said, but, um, here's the deal when Christie dies. Cause it's going to happen. You all get mom. I'm done like, and they all kind of laughed at me and I was like, no, I'm dead serious.
[00:30:28] Kourtney Ep- Kourtney View: Like, she's your response.
[00:30:29] Kourtney Ep- maya view: is not a joke, folks, and this is for real.
[00:30:33] Kourtney Ep- Kourtney View: your responsibility. Um, so yeah, that was. That was kind of, that was when her, her body really started to take a. You know, that, that kind of just, it kept, she kept having issues, kept having kidney stones, kept having things. So it was, it was kind of a touch and go for like the, the next three years.
[00:30:56] Kourtney Ep- maya view: So educate us on this, Courtney. So with getting kidney stones [00:31:00] and all of us gals, some of the guys too, if you've ever had a UTI, that's enough for me. Ouch. Ouch. Ouch. Ouch. I've had a kidney infection, UTI. Yeah, they're not fun. We know that.
[00:31:09] Kourtney Ep- Kourtney View: Right,
[00:31:10] Kourtney Ep- maya view: it's, is this something that happens with Rett syndrome though?
[00:31:13] Kourtney Ep- maya view: Is this specific or was she just not getting enough hydration? Like, is, why? Yeah.
[00:31:19] Kourtney Ep- Kourtney View: it's hereditary in our family, the kidney stones are hereditary in our family, and then the lack of hydration, because of course she couldn't get up and walk and go get herself a drink. She was reliant, you know, one of the issues with Rett syndrome is that you are reliant on other people for pretty much everything.
[00:31:34] Kourtney Ep- Kourtney View: So she was reliant on the people around her. who were taking care of her to, um, you know, make sure she was getting enough to drink and things like that. So, um, it was kind of a combination. And then because she's sedentary with, you know, because she doesn't move a lot and stuff like that, those things are exasperated.
[00:31:51] Kourtney Ep- Kourtney View: Um, a lot of the things that do take our girls, we have girls dying unfortunately at different ages. I've had, A client as young as seven die. [00:32:00] I've had girls who are in their thirties. Like it just, it can be seizures. It can be, um, breath. They, they, their body doesn't breathe for them automatically like ours does.
[00:32:11] Kourtney Ep- Kourtney View: There, there will be times where their breath, it can be, um, seizures. It can be just. a long, uh, it's called long QT, which is something with the heart. It, it can be just, they go to sleep one night and don't wake up. Um, so yeah.
[00:32:28] Kourtney Ep- maya view: I feel like A lot of people who have an anticipatory losses are going to connect with your story and Christy's story so deeply, Courtney, because it feels like, I mean, gosh, this was ingrained in you as a child. You're like, I don't want to, I don't want my 10th birthday, which is usually a really fun birthday for kids, right?
[00:32:46] Kourtney Ep- maya view: Because you're double digits and it's like a fun one, right? You know, you're young, all your birthdays are run, but you know what I mean? But you have had this, this quite a long anticipatory and. You know, we often talk about like getting the call here. And of course we're going to, we're [00:33:00] going to get to the part, of course, where Christie passes.
[00:33:02] Kourtney Ep- maya view: But for, for you, it's like all these calls. That's what I've noticed with anticipatory losses. Right. And especially when you're dealing with something like Rett syndrome, you're kind of always living in that moment of like, this can happen at any time. This can happen at any time. And that's such a heavy thing to carry for most of your life.
[00:33:23] Kourtney Ep- maya view: You've carried that, right? It's yeah.
[00:33:26] Kourtney Ep- Kourtney View: And you realize now, like I'm, I'm realizing now I'm actually in, in therapy and trauma therapy because I do have some of that complex, you know, post, you know, traumatic, because you're living when you, when you're in it, you don't realize it. You're in constant fight or flight. You're in constant, constant stress, um, constant chronic stress.
[00:33:49] Kourtney Ep- Kourtney View: And it's when you come out of it. And I mean, I'm, I'm eight years, almost eight years out that it's, it's really like, I'm feeling it now. My body has [00:34:00] like, I'm feeling all of the, the everything of carrying that for so many years. And again, as I tell everybody, I would not change Christie for the world. I would not change my life with her, but you know, you.
[00:34:14] Kourtney Ep- Kourtney View: You don't realize the toll it takes until you're, you're, you're done with it. And then you're like, holy shit.
[00:34:24] Kourtney Ep- maya view: Yeah, yeah, that's why I wanted to ask you that because it's, it's a lot and all of, of the losses we talk about on the show are a lot, but I feel like it's important to talk about things that are very specific with the type of loss because I think bringing light to that and just allowing grace for people to process because like you said, you're a, you're almost eight years out, just like me.
[00:34:44] Kourtney Ep- maya view: We're on the same time here, but it's, it's, You know, I'm still processing from the things that I went through. So I totally get it. But what stands out in your story, so many things do, but just that, you know, I mean, you didn't want to turn 10, you know, I mean, like that's a lot of stuff to unpack. So I [00:35:00] think that's amazing that you're unpacking it and taking the time for yourself.
[00:35:03] Kourtney Ep- maya view: I think it's, again, I talk about that all the time. I think it's really necessary. So tell us Courtney about, so 2013, We go for three years and she's, she's struggling, right? She's struggling with a, with a lot. So walk us through what ends up happening in 2016. I lost my brother right before Thanksgiving.
[00:35:23] Kourtney Ep- Kourtney View: Yeah. It, hers was. The Sunday after Thanksgiving,
[00:35:27] Kourtney Ep- maya view: The Sunday? Oh my God, we're days apart. That's wild. Oh my gosh. So walk us through what this was like. Did something significant happen where she just took a turn or it must've been a rough three years.
[00:35:39] Kourtney Ep- Kourtney View: it was, um, I will say there was 1 really cool thing is I met my business partner and, um, in 2015 and was she was showing an eye gaze device and talking about what was possible. And I walked up to her at her break. And I said, hi, I said, I have 2 questions for you. And she said, yes, ma'am. I said, um, is it too late for my sister?
[00:35:59] Kourtney Ep- Kourtney View: And she goes, [00:36:00] how old is she? And I said, she's 48. She goes, it's never too late. And I said, okay, and then she said, what's the 2nd question? I said, how do I get to be you when I grow up? And funny thing is, is now I do like, I'm her business partner and we, you know, we do, but I got to actually use a device, uh, Toby with my sister at the age of 50 and got to hear my sister talk.
[00:36:19] Kourtney Ep- Kourtney View: with her eyes. Um, I got to hear my sister say, I love you for the first time, which I always knew my sister loved me, but to hear those words, I cried for four hours. I also got to hear my sister tell me off for the first time.
[00:36:33] Kourtney Ep- maya view: Oh my god. Equally cool. Equally cool.
[00:36:35] Kourtney Ep- Kourtney View: it was, um, so yeah, so we trialed the with her when she was 50. Um, Little aside was right before the, we trialed the Toby, we went on a, we, my sisters and I went on a sister's trip.
[00:36:50] Kourtney Ep- Kourtney View: We could not take Christy because unfortunately medical and all that other stuff, it was a mess. Well, it was over her weekend that, um, I would have seen her. [00:37:00] So I said, Hey, I'm not going to be home. I'm going to, you know, Arizona with Kathy and Carrie. Um, but I'll see you when I get back. So my sister ended up in the hospital while I was in, Arizona.
[00:37:12] Kourtney Ep- Kourtney View: And I got back and I went, did you do that on purpose? Cause it was just a one day thing. And she got this big smile on her face. I was like, you little shit.
[00:37:22] Kourtney Ep- maya view: Oh my god. Oh
[00:37:23] Kourtney Ep- Kourtney View: my sister Carrie after that. I said, okay, we got to plan a trip. We got to plan a sister's trip for Christy. So we took her to that next May.
[00:37:32] Kourtney Ep- Kourtney View: Um, we took her to discovery Cove and swam with the dolphins and had an Absolutely fabulous time and it was amazing. Um, Christie turned 51 in July. Um, I went, I had just gotten the phone call from my business part. Like, that was when things kind of started happening for me. This is all kind of intertwined.
[00:37:55] Kourtney Ep- Kourtney View: This is why I'm saying it. Um, I had gotten the call from right you to come, you know, Hey, we want [00:38:00] you on board. And so I went to Seattle to participate in a workshop with my business partner in July. And I came back and went to go see Christy and nobody had said anything to me. Nothing. It was about right after it was towards the end of July.
[00:38:20] Kourtney Ep- Kourtney View: And I came back and walked into her room and she was laying. Kind of in a weird configuration and I, she smelled and I was like, what's going on? So I changed her, her diaper was, she was, she was still wearing, you know, she still had to wear diapers because of not being able to do things by herself. Um, and her bottom was completely like, it was, and I was like, What the?
[00:38:50] Kourtney Ep- Kourtney View: And here she had cdiff, um, cdifferential, which I can't even try to explain it, but it is some kind of bias. [00:39:00] Anyhow, it was very contagious. Nobody told me that.
[00:39:02] Kourtney Ep- maya view: I've never heard of that. Yeah. Okay.
[00:39:04] Kourtney Ep- Kourtney View: And it was, um, my mom's like, I called my mom, like, what's going on? She goes, Oh, what, what are you in the room? I'm like, yeah. She's like, you shouldn't be in there.
[00:39:12] Kourtney Ep- Kourtney View: It's contagious. I was like, Oh, great. Thanks. Um, okay. Um, but that slowly started a cycle of, she, she broke her finger, um, falling out of bed, which I'm no words. Um,
[00:39:28] Kourtney Ep- maya view: Yikes.
[00:39:30] Kourtney Ep- Kourtney View: And she had to have surgery, which then led to the C. diff, which then she started having, um, it just became a cycle of like, she would get a little bit better and then she would not feel good.
[00:39:42] Kourtney Ep- Kourtney View: And by let's see, that was the end of July. I started back to school. was barely functioning because I didn't know what was going on with my sister. Um, and then she, I think it [00:40:00] was September, end of September, she went into the hospital. And it was, she was, again, her blood pressure was really low. She was, not eating.
[00:40:11] Kourtney Ep- Kourtney View: Um, she had gone from like 140 pounds to about 130 pounds. She had lost like, if you know, 18 pounds in a matter of, you know, a month, um, wasn't eating, wasn't doing a lot of things. Um, and she was having, I think I, I can't tell you exactly like the exact timeline because I will be very honest. I don't know.
[00:40:34] Kourtney Ep- Kourtney View: It was such a shit time. I don't remember, um, a lot of it. She, um, she ended up coming home on hospice. That was the only way that the home would take her back because, and, and honestly, I knew at that point, like when I was at the hospital with her every day and everything like that, um, I knew [00:41:00] the light wasn't in her eyes.
[00:41:01] Kourtney Ep- Kourtney View: Like she, it was gone. Um, and so I. was trying to, to deal with that and going, okay, like, let's just keep her happy. Whereas my mom was, well, she ate a little bit today. She ate a little bit of watermelon juice or she, you know, my mom wasn't ready to, um, deal with it. So, We go through me teaching going over and seeing her literally every minute I possibly can, because I'm like, I need to be with her.
[00:41:35] Kourtney Ep- Kourtney View: Um, I was supposed to go to England for work in, in October. Um, we're at the hospital. She was still in the hospital at this point. And I'm like, I'm not going. And my, I'm standing on one side of the bed. My sister carries on the other side of that. And I'm like, I'm not going. And Christie opened her eyes and gave me the dirtiest look like, hell, no, you're going.
[00:41:58] Kourtney Ep- Kourtney View: And I was like, [00:42:00] and Carrie looked at me. She goes, I think she just told you that you're going. And I was like, I looked at her and I said, if you die while I'm gone. I will kick your, I will come haunt you. I will pull your ass out. Like we didn't, we didn't sugar coat stuff with Christy. Like we always talk the way, you know, and cause I was scared to death.
[00:42:17] Kourtney Ep- Kourtney View: I didn't want her to die alone. So I was like, do not, do not die while I'm gone. So went to England, came back. Um, she's still like, she was now down to like 110 pounds. Like she had lost so much weight. She was not. Move it, she was not walking whatsoever. She was not, um, doing much of anything. Um, and we had her, um, the week of Thanksgiving, we had her in house planning meeting for the next year.
[00:42:52] Kourtney Ep- Kourtney View: So every year you have to do an in house plan, like in school, it's called an IEP, an individual education plan. But once you get into like a housing, you, [00:43:00] it's a house plan. So, um, We had her meeting on Wednesday, and I knew my mom was like, Oh, well, we got a plan for next year. And what are her goals going to be?
[00:43:09] Kourtney Ep- Kourtney View: And what are, and I'm going, She's not going to be here. Um, so I asked my sister Carrie to FaceTime into the meeting with me. Um, and so that was Wednesday morning, and we went into the meeting. Wednesday morning. And I said, you know, we're talking about end of life. My mom's like, it's not what we're, no, we got to talk about goals and everything else.
[00:43:31] Kourtney Ep- Kourtney View: And I'm going, you know, and the problem was, is I was always the bitch. at the home. I was the one who they would, they, they wanted to keep my mother happy. So they would tell her all the good things. And I was the one who got all the, the truth. Um, so they were like, okay, Pat, well, we can keep that goal in here and we can, you know, and it's about walking again and stuff like that.
[00:43:51] Kourtney Ep- Kourtney View: And I'm going, oh my God. So we finished the meeting. My mom goes out to smoke with my stepdad and the nurse comes trotting up to me. [00:44:00] So we need to talk to you. I said, what's going on? And they're like, Christy's not doing well. And I'm like, did you tell my mom? Why didn't we talk about this in the meeting?
[00:44:10] Kourtney Ep- Kourtney View: And they're like, well, we just, we don't want to upset your mom. And I'm like, okay, great. So I get to be the one to upset her. So I walked out and my mom and stepdad are outside smoking. And I said, Hey, um, just want to let you know that, you know, the nurse came and told me and they're like, mom's like, you're, you're just being dramatic.
[00:44:27] Kourtney Ep- Kourtney View: Stop it. And I'm like, okay. Okay. Bye. So, the next day was Thanksgiving. Um, I was at home with my, um, late partner and, um, I get a phone call on Thursday morning. From my mom, Christie said they found Christy unresponsive this morning. And I went, okay, I'm on my way over. So I drove over, spent Thanksgiving day at the home with her.
[00:44:53] Kourtney Ep- Kourtney View: Um, she was, she was there, but she was, um, [00:45:00] my sister Carrie called me and she said, I'm going to fly in tomorrow. And I said, okay. And she said, I'm not flying in for mom. I'm not flying in for Christie. I'm flying in for you. Um, I'll be there for you. Cause I know this is going to. Um, so I picked up Chris Carey at the hospital or the airport on Friday morning and, uh, she sent me home Friday night and she said, go sleep.
[00:45:25] Kourtney Ep- Kourtney View: You haven't slept much this week, go sleep. And she goes, cause I have a feeling we're going to have a long weekend. And I went home and slept, came back on Saturday morning and climbed into bed with my sister and pretty much told everybody to fuck off. And I climbed into bed with my sister and I didn't move.
[00:45:44] Kourtney Ep- Kourtney View: I laid there. With her, um, and just held her hand and talk to her and everything else, um, wouldn't even move in the hospital. The nurses like, I just wouldn't move. I'm like, you can work around me. Thank you very much. Um, my mom kicked us out [00:46:00] of the room on Sunday morning. Um, because she wanted to have some time with Christy by herself and I said, okay, can I have time when we get back?
[00:46:09] Kourtney Ep- Kourtney View: And she said, Oh yeah, not a problem. So we went to Starbucks really quick and got a drink and came back and I said, okay, mom, it's my turn. And she said, no, it's not. You don't get any time. And I was like, okay. And so I crawled back into bed and I grabbed Christy's hand and my mom said, I don't want you there.
[00:46:26] Kourtney Ep- Kourtney View: And I said, I don't care. That's not your choice. I'm going to hold my sister's hand, and I'm going to be there with her, um, and I did. I held her hand, and she, um, passed away on Sunday morning at 1027 in the morning.
[00:46:39] Kourtney Ep- maya view: Well, I think you, I think you knew too. I think your intuition was just screaming. Yeah, you knew.
[00:46:44] Kourtney Ep- Kourtney View: I knew she wasn't going, like I told my siblings, I said, she's not going to be there. She's not going to make it to 2017 with us. If you think differently, because mom was telling them differently. I'm like, that's not going to happen. Um, so yeah, so we [00:47:00] immediately, cause I was in charge, um, one of the things with Rett syndrome is they're doing a lot of research.
[00:47:04] Kourtney Ep- Kourtney View: And so we had always said that we would. Donate her brain to Harvard, um, for the, the brain research that they, they have a brain research trust. Um, so I made sure I was, my sister, Carrie and I were running around beforehand trying to get all of that done and making sure that we had, because it had to be very specific, um, you know, steps that you had to take.
[00:47:28] Kourtney Ep- Kourtney View: So, yeah, my sister's a Harvard, I say she's a Harvard girl now, so I'm like, my sister went to Harvard
[00:47:32] Kourtney Ep- maya view: She is. She totally is. I love it. No, and I think those things are super important though, Courtney. And you've probably heard some of some of the folks that have come on and shared, but I think when we lose our sibling, like if there's ways like, you know, my brother was an organ donor, I've had organ donors on before.
[00:47:50] Kourtney Ep- maya view: I've had other folks that are like, yeah, we've donated this and that to help science. I think it's a really beautiful thing and it, it's such a tragic, awful loss. But then when you know that you're [00:48:00] giving back and helping, it can, it can be one of these gifts in such a difficult, difficult, horrible thing.
[00:48:07] Kourtney Ep- maya view: Yeah.
[00:48:08] Kourtney Ep- Kourtney View: So, yeah. So, um. My mom and I's relationship after that was non existent. She, um, she told the hospice nurse that I killed my sister, that I murdered my sister, um, because I took her to Discovery Cove. And according to her, that was when everything started, which it wasn't, it was when she broke her finger. Um, but we, We didn't, I called my siblings and said, okay, she's yours.
[00:48:34] Kourtney Ep- Kourtney View: And
[00:48:35] Kourtney Ep- maya view: promised.
[00:48:36] Kourtney Ep- Kourtney View: as promised, um, when it came time to plan her memorial, my mom didn't let me have anything to do with it. Um, she completely cut me out of it until she needed something. And then she, um, Then she, oh, hell, now you can be part of it. So we had a, um, memorial for her right after Christmas. Um, and I don't re [00:49:00] I don't remember it because I will be very honest.
[00:49:02] Kourtney Ep- Kourtney View: My nephew was feeding me cranberry and vodka the whole time. Cause I, I couldn't, I couldn't deal. Um, I couldn't deal with the part that my sister was actually gone. Um, and it's one of the hardest things I think was everybody expected me to be because I, you know, before then. I was like, I know, Christy, it could happen.
[00:49:23] Kourtney Ep- Kourtney View: And I would always say, well, when, you know, when Christy dies, I will be okay. Because I will be okay for her. Because I know she'll be free of Rett Syndrome. And I now realize I was completely gaslighting myself. Because you know what, I was, I was, I was okay with her. She is free and she is up there and she doesn't have Rett Syndrome.
[00:49:41] Kourtney Ep- Kourtney View: And she's probably wreaking havoc in heaven. Because I know my sister well enough. Um. But I did not realize how un okay I was going to be for me. And when people told me that, Oh, well you should be okay, or you, you, She's free of Rett Syndrome. I was like, thank you for making me feel like a selfish [00:50:00] piece of
[00:50:00] Kourtney Ep- maya view: Mhm.
[00:50:01] Kourtney Ep- Kourtney View: because I would much rather have my sister here right now.
[00:50:04] Kourtney Ep- Kourtney View: I didn't realize how hard it was going to be, even when you expect it.
[00:50:11] Kourtney Ep- maya view: Yes. And it's so, I know, I know, and I'm so, I'm so sad and heartbroken that you had to go through that, but I'm so glad, you know, it's like holding both emotions at the same time. I'm so glad that you are talking about this because, you know, in our, As we do a monthly support group, and I do TikTok lives, and you know, there's just, we've done these events now, we're going to continue to do things to support.
[00:50:33] Kourtney Ep- maya view: And when the siblings that come that have an experience like you, where it's anticipatory, like you know your sibling's going to die one day, and sometimes that anticipatory time is a couple months, sometimes it's a week, sometimes it's years, like you, it's all over the place. But, what is so difficult is when it actually happens, because it's There's just so many, in anticipatory loss, there's so many losses and then the [00:51:00] loss and you don't really know how you're going to deal with it until it actually happens.
[00:51:06] Kourtney Ep- maya view: So I'm so glad that you, you are sharing that and just being real, like, yeah, I had to numb myself. It is what it is, but now here I am and I'm doing it. Doing the work and I do work around Rets and like, I think that's amazing, but I think it's really important that we are just super honest about that part of it because I do find that, you know, it's When it actually happens, that's a whole other, other part of the journey because they've been in your life.
[00:51:32] Kourtney Ep- maya view: Again, whether it's been weeks, months, years, however long they've been struggling with what I feel like we're talking about Rett syndrome today, but you know, different, different mental illnesses, physical illnesses, whatever it is, there's still now this, this part of it actually did happen. Now what?
[00:51:50] Kourtney Ep- Kourtney View: Now what, how do I, and like I said, she was my person. I don't, I never had children, um, because I was taking care of her and doing things. Um, so it was kind [00:52:00] of one of those things of like, oh my God, what, what do I do with my life now? And I was teaching, and I, to be honest, I've never wanted to be a teacher.
[00:52:07] Kourtney Ep- Kourtney View: Um, , it was just kinda something I fell into. So it was, it was really rough for a long time. I was not, I didn't have the, I always loved teaching. I loved teaching my kids. I didn't love. all the other stuff that went with teaching. Um, so once I had lost her, I didn't have any, I had patience for my kids. I could handle my kids all day, but adults, I had not, like, I had nothing left to give.
[00:52:33] Kourtney Ep- Kourtney View: Um, and so in 2000, team, I think it was, and end of the year, 2018, I took a leave, um, decided I was going to kind of take some time and figure things out. I was dealing with some other things, um, in my personal life with my partner. Um, and I called Susan, my business partner and said, Hey, you know, I'm, I'm free if you guys need some extra help.
[00:52:57] Kourtney Ep- Kourtney View: And. And found my passion again and started, [00:53:00] so I started working with my girls and boys and so have left the school district completely. And now I work with, with, like I said, I work with my clients and I get to, um, be part of their worlds and, and see little glimpses of Christie in every single one of them.
[00:53:15] Kourtney Ep- Kourtney View: They'll do something or they'll laugh like her, like yesterday. So her birthday was Monday. And, um, I got on with one of my clients yesterday and her mom's like, Oh, I got to tell you what she did last week. They have free movies. And I said, okay. And she said, um, we went to go see the Smurfs, the Christie loved the Smurfs.
[00:53:33] Kourtney Ep- Kourtney View: Like she adored the Smurfs. And she's like, and, and my client, she goes, got on her device. When we got home that night and told her dad, go theater, like was telling her dad that they went to the theater to see the Smurfs. And then we were talking about the Smurfs and she was like, blue, blue. And I was like, And it was just like, Oh my God.
[00:53:48] Kourtney Ep- Kourtney View: It was like Christie's way of saying, Hey, you know, sis, I got you. And she does, like, I went to Iceland in April and there was Smurfs in the coffee shop that I was at. And I was like, I was like, Oh, hi, Christie. [00:54:00] Hello.
[00:54:02] Kourtney Ep- maya view: Mm hmm. I totally, totally believe in that. Yep. I think that's so cool. I think that's so cool. And I love, I love that you took some time because it, I hear this from people all the time too, where they're like, you know, I wish I would have taken time or, and it's never too early to do it and it's never too late to do it.
[00:54:18] Kourtney Ep- maya view: And I think that's, um, because I, I have shared too in my story, like I ended up leaving my job and went back to work like right away. I was like, Nope, I'm going to start again. And then I It caught, yeah, and it caught up with me, and then I ended up having to take another break, and almost the same timeline as you, and then, and then I was like, okay, like, it kind of had to restart my career in some ways, and I'm really glad I did it, and it sounds very similar to your story, yeah, and it's like, you come back, you come back stronger, but it's like, I felt like I had to rebuild my life in a lot of ways, and it's not always a bad thing.
[00:54:54] Kourtney Ep- Kourtney View: Well, I did. And it was interesting because, um, [00:55:00] we, so I left my job working. We're doing all this stuff. I'm just like, I'm now, and my partner died in January of 2020. And then my mom died the next day, literally like within 24 hours of each other. Um, and so it was like that, honestly, that was the moment where.
[00:55:19] Kourtney Ep- Kourtney View: Um, everything started, like I had been numb and it's only been in the past couple of years with dealing with therapy and stuff that I'm really starting to actually grieve my sister and grieve the, the loss of her and learning how to deal with that loss because you do numb yourself or at least I did. I numbed myself for years in dealing with a lot of other things that it was, I couldn't, I couldn't face the fact that I had lost my sister.
[00:55:47] Kourtney Ep- Kourtney View: I knew she was gone. but I couldn't physically deal with the fact that she was no longer, that I can't go. She used to headbutt kiss. She couldn't kiss with her lips. So she would, she would headbutt you gently.
[00:55:59] Kourtney Ep- maya view: [00:56:00] Mm hmm.
[00:56:00] Kourtney Ep- Kourtney View: Um, and I'm like, I'm never going to get another headbutt kiss from her. Now I get headbutt kisses from my clients when I see them and I love it.
[00:56:07] Kourtney Ep- Kourtney View: But you know, it's those kinds of things that I'm like, now I'm starting to grieve those things and letting myself grieve appropriately.
[00:56:14] Kourtney Ep- maya view: Yeah, I get Courtney. That's I mean and and that's something that comes up too. And I'm thank you for sharing that I'm so sorry for your for your the loss of your partner and the loss of your mom and even when we have a complicated Relationship, it's just it's tough. It's losses loss and it's really tough and I'm sure those losses just brought Everything to the surface and now you're you're working through it And again, what a perfect time for you to be on here and sharing all of this I do, I do want to ask you something, Courtney, a little bit more going to the clinical thing side of this for just a minute, because I'm curious, and I meant to ask this earlier, but I'm curious with with Rett syndrome, is there a way now, or maybe they're working on this?
[00:56:53] Kourtney Ep- maya view: This is just the analytical part of me. Are they, like, is there a way to detect earlier [00:57:00] now? Are they, like, are they working on things? I know that you were sharing earlier in the episode that there's, you know, medication coming out or it's out and they're testing it on, you know, helping, but are there ways to detect?
[00:57:11] Kourtney Ep- maya view: Why is it more prevalent in women? I'd love for you to touch on that before we come to a close. That'd be awesome. Yeah,
[00:57:18] Kourtney Ep- Kourtney View: I'm not great at the science part of it, but I can explain it a little bit. So
[00:57:22] Kourtney Ep- maya view: okay. Yeah.
[00:57:23] Kourtney Ep- Kourtney View: reason it's on more predominant in females is that it is a, um, it is a mutation on the MeCP2 gene, which is on the X chromosome. So while we have two X chromosomes as women, we are, one gets, shut down and the other one still works for, for our, and so we have a lot, there's a lot of girls.
[00:57:46] Kourtney Ep- Kourtney View: Whereas with boys, they only have one X chromosome. So a lot of the times when they, um, when they, when they get that mutation, they, they're very severe or they have very, very severe issues that resound with it. And so [00:58:00] they, They tend to pass away a lot sooner. Like I said, we now, because of medical technology and stuff, have a lot more kid boys that are, that are surviving with Rett syndrome.
[00:58:09] Kourtney Ep- Kourtney View: Um, I've actually, when I was in England, got to work with a 24 year old young man with Rett syndrome, and it was amazing to like, I was like, mind blown. Um, if you, um, yeah, so that's, Where that is, there is a, um, like, I could do a test. My sister and I both did a test to see if we were carriers, um, for Rett syndrome.
[00:58:31] Kourtney Ep- Kourtney View: Um, we both funny enough, got false positives, which we had already knew before then that we weren't going to have children, but like, when, when we got the positives, we were like, oh, hell no. And then they were like, oh, well, it might be false. So, um, there is a, there is a test. And then, like I said, um, in they've, they've been doing trials in.
[00:58:48] Kourtney Ep- Kourtney View: Yeah. May of last year was when Acadia Pharmaceuticals, um, brought in, they, they started a, uh, Like I said, a medical medication, sorry, [00:59:00] um, called Debu that affects, that helps with some of the symptoms, um, which was really cool because again, um, I got to go speak at their launch and be a part of their launch of the thing because of my relationship with my sister.
[00:59:14] Kourtney Ep- Kourtney View: So it was this, um, Insane. Um, then on top of it, I get to, like, I had the president of the company talking on an iGaze device. I was like, here, why don't you try and see what my, you know, my kids do. Um, so it's, it's funny because we've talked about it and somebody, my business partner, Susan asked me, she's like, would you have.
[00:59:35] Kourtney Ep- Kourtney View: Would you have left the school system? Would you have done what you did? Where you're at now, if Christy was still alive, and I know I wouldn't have. I know I would have, because I would have needed to take care of her. And be here for her. And so in, in a way, I think Christy was kind of like, Okay, I've lived and I, you know, [01:00:00] you're ready to pass on my, like, I'm passing in the torch on to you.
[01:00:03] Kourtney Ep- Kourtney View: So it's like, this is what I believe now. It's like, you've got this, you're going to go out, you're going to go show everybody what we're capable and what we can do. And you're going to take everything I taught you, because she taught me literally everything I know and, and pass it forward to the girls on their eye to gaze devices, their, their teams that are working with them.
[01:00:21] Kourtney Ep- Kourtney View: And then on top of it, the siblings on how to, how to do this life with Rhett, because you can, you can turn out kind of normal when you have a sibling with Rhett syndrome.
[01:00:32] Kourtney Ep- maya view: Yeah. Yeah. I know. I think that's beautiful. I, I connect with that too. And I just think the work that you're doing is awesome. And I think it's also your story is also a story of, Finding and we were kind of chatting about this before we hit record, but finding your purpose out of such pain, right. And out of, you know, this lifelong journey that you went on with your sister, because this is, that's all you've known your whole life, right.
[01:00:56] Kourtney Ep- maya view: Is, is that with Christy and so taking that [01:01:00] and I, I, obviously I connect with that because I had to do something with my pain and you are definitely doing something with your pain. So I just really commend you for that. And thank you for sharing your story so openly and Christy's story. And I know that you guys are going to want to connect with her.
[01:01:16] Kourtney Ep- maya view: So where are you comfortable, um, with people reaching out to you? Of course, we'll put it in the show notes as well, Courtney.
[01:01:22] Kourtney Ep- Kourtney View: um, you guys can find me on Instagram on, um, I'm on TikTok. I'm on Facebook as Courtney Barnum. If you want to email me, um, my business email is Courtney at gp2c. org. Um, it's Courtney with a K. Um, but I, yeah. Um, and then if you want to know anything more about Rett Syndrome and what we do, um, you can go to rettuniversity.
[01:01:46] Kourtney Ep- Kourtney View: org and girlpowertocure. org, which is our, um, non profit that we, work with it. So if you want to learn more about Rett syndrome or see our amazing kids and all their awesome stuff, that's, it's all on our, our social media and on our website.[01:02:00] 
[01:02:00] Kourtney Ep- maya view: Okay, perfect. Well, thank you again, Courtney. I've loved having you here today.
[01:02:05] Kourtney Ep- Kourtney View: Thank you, Maya.
[01:02:06] Kourtney Ep- maya view: And thank you guys so much for listening to the Surviving Siblings Podcast.