Courageous Motherhood: A Caregiver's Journey through Disability and Hope

Jessica Patay shares her journey as a caregiver for her son, Ryan, who was diagnosed with Prader-Willi Syndrome at five weeks. Prader-Willi Syndrome is a rare genetic disorder that requires 24/7 supervision and care due to its associated symptoms, including low muscle tone, delayed milestones, and an insatiable food drive. Jessica talks about the difficulties she faced with her newborn, Ryan, who was unable to cry or suck and needed a feeding tube and occupational therapy. Managing Ryan's anxiety about eating is an ongoing challenge that requires constant monitoring of the kitchen.

Jessica discusses the impact of her son Ryan's condition on her family and the importance of maintaining a healthy balance. She prioritizes spending one-on-one time with her other children and taking trips without Ryan. Jessica also emphasizes the importance of having a supportive community and resources for caregivers. She has created an organization called "We Are Brave Together" to provide a platform for caregivers of disabled children to connect and find support.

Jessica plans to set up a care plan for her son Ryan before she and her husband become incapacitated or pass away. She also emphasizes the need to take breaks as a caregiver and empower their children to survive without them. 

About Jessica:

Jessica Patay is the founder and executive director of We Are Brave Together (WABT), a 501(c)(3)nonprofit organization that supports caregiving moms with children of all types of disabilities and neuro-diverse diagnoses. In addition, she is a sought-after speaker, podcast guest, writer retreat coordinator, fundraiser, mother of three, social influencer, and a champion of self-care practices and their positive effect on motherhood. Jessica excels at creating and supporting communities of caregiving moms, and she is a visionary for the disability community worldwide. 

Jessica’s mission is to combat the isolation and burnout that these moms and their families face by creating supportive, resourceful, and empowering communities and meaningful connections. Her vision is that every family in the disability community is strengthened, equipped, and inspired for their unique journey. This vision has fueled WABT’s growth in 6 years into an international community of over 2200 moms, representing all 50 states and 24 countries. Jessica has helped launch dozens of support groups throughout the U.S., New Zealand, and Australia. To extend her outreach, Jessica hosts a podcast, “Brave Together with Jessica Patay,” which offers a library of inspirational stories and resources for the disability community.

Connect with Jessica:

Web https://www.wearebravetogether.org/

Facebook https://www.facebook.com/wearebravetogether/

Transcript

Natalie: 0:02

Hey guys, it's your favorite sisters with the Confessions of a reluctant caregiver podcast. On the show, you'll hear caregivers confessing the good, the bad, and the completely unexpected. You're guaranteed to relate the inspired lead with helpful tips and resources and of course, laughs Now, let's get to today's confession. Hello, Miss JJ.

JJ: 0:31

Well, hello, Natalie.

Natalie: 0:33

You know, I wish your sister was here. But she's not able to be here today. And that's sad.

JJ: 0:39

I know, because we have a guest that has children. And so while we have dogs, Emily, of course has the three kids and she understands. While motherhood is one thing, being a caregiver for a child with disabilities or differing abilities. That's another case entirely. So we have a great guest today. So

Natalie: 1:03

excited to and she's hot back off a trip she is proving that you can have a life and be a caregiver. And we're gonna hit on that. So Jay, why don't you tell us about awesome Jess Kepa Tay,

JJ: 1:17

I am ready. I know. So Jessica is the founder and executive director of we are brave together. And that is an organization that supports caregiving moms with children of all types of disabilities. Their mission is to combat the isolation and burnout that these moms and their families face. But like everybody, it starts with a caregiving story. Jessica's life as a caregiving mom began at the birth of her second son Ryan, and right away they knew something was not right. At one month, Ryan was diagnosed with a failure to thrive and at five weeks, the family received an answer. A diagnosis of Prada Willi syndrome, the rare disorder is a lifetime disability requiring 24/7 supervision and care. Today, Jessica says the vigilance needed to care and protect Ryan can be exhausting. But she says something else Natalie and we say it a lot. She says sometimes she wishes she could just be Ryan's mom and not his full time caregiver. Like I say, sometimes I just wish I could be a daughter. You say sometimes you wish she could be a wife. Yep. Jessica, we are so glad to have you here. There's so much to talk about.

Unknown: 2:36

I'm already just giggling being in your in your Orva. It's just so good to be with you both. And I appreciate what you're doing. And thank you for giving me this opportunity to share my caregiving story.

JJ: 2:49

So you have so first of all, you have other kids, first of all, how many how many are how many of there are you?

Unknown: 2:57

I know, right? I have three kids that feel like four.

Natalie: 3:03

Wait, is your husband counted in one of the kid

Unknown: 3:05

counts? No, he's hot. So we are a family of five dogs. My oldest is Luke and he's 22. He's a senior in college. My special one with prader willi syndrome is Ryan he is 20. And he is in the transition program with our school district until he turns 22 And then I've Kate who is 18 and is a senior in high school. Oh, wow.

Natalie: 3:36

See you stair step two your children just like us were stair stepped? Ah, yes, yes. Yes. Yes. The sisters and because I don't want to say somebody's 40s JJ. And I'm 47 Emily's 45. And we just had a birthday. So technically, we're all normally about two years apart. Yeah. And I love that birthday.

Unknown: 3:55

Yeah. Thank you.

JJ: 3:56

Thank you. Thank you. Great. Oh, this

Natalie: 3:59

looks the youngest, but it's fine. I love that. So we're gonna ask you about kind of like, how it started. I mean, you had you had Luke, and your mom and you're all like, Let's have another job. Let's do it. And then you have Ryan and you're like, not the same. And different experience. Lots of probably uncertainty. But this is interesting because we had the we had some sisters on and their brother Buddy was the second born of four of the four of them three girls and a boy. You and your husband decided to have another child even with the struggle, so let's kind of let's kind of unpack all that good stuff. Oh,

Unknown: 4:40

sure. Sure, sure. Well, when when I was pregnant with Ryan, we actually didn't know if we were having a boy or girl the first time around. I was like, Okay, now there it is enough. I need to know what we're having. I've got to decorate the nursery. I've got to be all set up for loops. So we knew we were having a boy. Second time around I defer to my husband. He said like let's Have it be a surprise and I actually think it was a blessing in disguise. Because when you know the sex, you start dreaming and scheming. Right? And you just start thinking about it. And I didn't know so I didn't have any visions per se of Luke, and his baby brother or baby sister. I just, you know, of course envisioned our family. And when I was pregnant with two, I was like, two is good one on one. You know, it's, it's that is we're just we're just gonna stop it too. That sounds really good. That sounds doable. That sounds like I can control it. But a choke, right?

JJ: 5:40

Control. That was a control. What's

Unknown: 5:44

that word? Anyway, so. So then when Brian was born, he he didn't cry. When he was born. This stood out to me. You know, newborns scream bloody murder, when they are pushed out of their little comfortable sack. He cried for a few seconds and stopped. And I thought, Oh, that's interesting. Because Luke, you know, I remember very vividly when Luke was born. I thought, well, maybe I got a sleepy, easy. Newborn. Right. And so, you know, quickly, he had some breathing problems right away. When he was born, they whisked him away. We knew that his testicles were undescended, which wasn't completely uncommon. I still wasn't simply completely alerted. And but then he couldn't sack and he didn't cry and he didn't wake up. Or food, like most newborns won't wake up because they're wet because they're hungry because they need something. And Ryan didn't he was just very, very sleepy baby. He was only one pound lighter than Luke. So even though they were kind of treating him as if he were small for his gestational age, and treated him like a preemie. He wasn't a preemie. He was full term. Yeah. But he just he couldn't suck, and he could hardly move. And so I got discharged on day three, and he got transferred to the peds Ward, which is where we lived for a month, while we were trying to figure out what was going on with him. Hmm.

JJ: 7:16

So the first of all, when I read your info, it said, they say he has failure to thrive, which you know, is really an interesting diagnosis. Okay. But on the fifth Wait, they finally gave you a diagnosis, which I'm thinking is a blessing and a curse you you get it? And that's a good thing. But then you're like, Oh, we got it. So now we know what we have to deal with. So what was what what is the diagnosis? Tell us about that? Because it's rare.

Unknown: 7:42

Yeah, it is rare. It's one in 10 to 15,000. So it's, it encompasses a lot of things. And I always say there's no cocktail party answer to explain it. But kids are babies are born with low muscle tone, which is why Ryan couldn't cry and couldn't sack and could hardly move. Now it's a spectrum. So some are very, very, very low tone. And some are less Ryan had to go home with a feeding tube. When we were discharged when he was a month old, because he couldn't catch up. We are working with a feeding specialist. There are occupational therapists that are feeding specialists. And, you know, there's 1000 things that go into your mouth being able to suck. And he just he couldn't do it. So we we ended up with a feeding tube. The early years and POWs are focused on milestones, because everything, everything is delayed. So feeding, you know, walking, sitting, moving speech, so we had ot PT and speech pretty much right away. We had ot right away, then PT, I think when he was, by the time it was two months, and then speech by the time he was one year. So you're very focused on all of that Ryan didn't walk till he was three. He got on growth hormone and when he was two and a half months old, because that is specifically indicated for AWS, to help with aid and gaining lean muscle. And even with all the interventions, he's still didn't walk till three, which is very late, even for AWS. So the early years, it's just about those gross motor and fine motor and speech milestones. Now what makes the news, what makes it crazy and interesting is that in childhood, there's an insatiable food drive that kicks in. So the brain and the body do not tell kids and adults with the syndrome that they've had any food. They don't feel full. Yeah. Now, Ryan doesn't say I'm hungry, but he is definitely food seeking and he definitely will need reassurance about the food schedule and who and that's even to this day, right? Even to this day, even this even to this day. So when we read about that, that piece, the food drive, it's life threatening. There are kids and adults that eat themselves into a medical emergency every year Now several times a year. That is why 24/7 supervision is essential. Plus, we live with a locked kitchen. When Ryan goes to school, everything there is locked as well. And somebody is always watching him at school. Somebody's always watching him at home. So there's a vigilance that I live with.

JJ: 10:20

Because I met we talked about that, which was so interesting, when we had our first conversation about the locked refrigerator, because we always talk about family and you've got the two other kids, your husband, you, everything be unlocked. How does that impact the rest of the family has every is everyone just okay, the fridge is locked. We want to get something to eat? How does a day look like to you guys? If because that Ryan has he has anxiety about not being able to eat? What is the day look like for you when you all are the whole family going through that vigilance? Right?

Unknown: 10:55

It's harder when everyone is here, because I'm the most vigilant, everyone does a fantastic job. But I'm the most vigilant. So having one away at college is kind of nice, because he's up late at night. And again, he does a great job. But, you know, we can all get distracted. What it looks like is that you're unlocking and locking 10,000 times a day. And when Ryan was 13 was when we had to start locking the kitchen, which is much later than I envisioned. When I read all about it. When he was diagnosed at five weeks of age. I thought oh my gosh, it's good. It's gonna hit like when he's 3456. And I was always waiting for the shoe to drop. It was a very slow burn. It was a slow increased interest in food. And then by the time he was 13, we caught him. I think he had taken seven protein bars from the pantry. The wrappers were under his bed. Right. Okay, it's time. So, you know, we announced to the family, this is what we're gonna have to do and everyone's like, but you know what we adapted within a couple of days. Yeah, everybody just got on board because they know it is to protect him. It's not about weight loss or protecting his weight. Although we have to do that for sure. And POWs. It's about his safety. And also, when you have a locked kitchen in the world of POWs, it decreases their anxiety because there is no hope that they can get food. If there's hope for access. It increases their anxiety increases their behaviors. Hmm. Ryan says thank you for locking the

Natalie: 12:33

kitchen. Oh, wow. And you've never had CPS called on, you know, that's just said and you've never had CPS called on you, like thank you for talking about abuse and neglect. And you think about outsiders, because that's the other thing as a caregiver, you're having to make changes because it's so you have a there's caregiving like we're caregivers for a mom, I'm a caregiver for my husband. And we also have because it's dual role. We just I absorbed my dual role I accepted I embrace it. I am and I know you accept your dual role. I'm a mom, and oh, caregiver. Yeah. Because this is not what parents would traditionally I don't wanna say normally, because I hate that word normally. What would they traditionally do? You don't have to do these things. And so you're putting on your mom and your caregiver hat at the same time? And I'd say at times did Can you even tell the difference at this

Unknown: 13:27

point? No, it's very hard for me to separate. It's very hard for me to even separate POWs from Ryan. And I remember hearing when he was little, eventually you will see your child without POWs. But it's very hard for me to see Ryan without it. Because, you know, he's affected cognitively, intellectually, emotionally. You know, he's not he, I mean, he asked some really great questions that are age appropriate and deep and thoughtful and compassionate. But then, you know, sometimes he still well, not sometimes he still has tantrums and he still has meltdowns because of a change or because, you know, someone walked into the family room and wants to use the TV, you know, and he thinks he owns the TV. So, you know. Yeah, it's it's hard to separate being his mom and being his caregiver. It's very hard.

JJ: 14:31

So tell me about this is you've been married for 16 years. 16. How

Unknown: 14:35

long have you been married? Oh, 26 years.

JJ: 14:40

16 years since you went on vacation, sorry.

Unknown: 14:43

16 years since we had a significant amount of time away a lot

JJ: 14:48

longer married. That's right. That's right. So but tell me about as far as because it's so hard for you all at times to get away but tell me about relationship. Ships because the one I am interested in is because we know and impact spouses but your other kids.

Unknown: 15:06

Yes, yes, absolutely. And I so appreciate you bringing up the siblings. I'm extremely passionate about the siblings and a disability family or siblings who, who have a sibling that seems to take up all the air and space and energy because of a diagnosis or struggle. Thankfully, I read early on about the siblings. And so my husband and I were always very intentional about taking one on one trips, with Luke and Kate having one on one dates, having trips without Ryan, just the four of us. We've done that many, many times now. And we don't travel as a family, all five of us anymore together. So I'll do one on one trips with Ryan, and so will, Chris. But we make sure that we have that time with the others. And we also, I thought, we were doing a pretty good job keeping the communication lines open. But in recent years, we've done family therapy, and we've unpacked some of the repercussions of growing up with Ryan and how it's been for Luke and Kate. And they are not unscathed. They are not unscathed. They love him fiercely. They cheer him on. And it's been a very, very hard journey. And they have their own PTSD from growing up with, you know, a brother who is anxious and who has tantrum who had to be restrained and who they had sometimes had to help with restraining in the past. It's been a long time. But that's very, very traumatic. And then I think I developed I know, I developed my own anxiety disorder, living on eggshells, walking on eggshells dealing with Ryan's anxiety and behaviors that, you know, that doesn't make me you know, silly Sally Fun Mom. And, you know, I wish it were different. But it's also made me a better human being alongside the anxiety that I carry.

Natalie: 16:59

Yeah, I know. It's funny, because I feel like we've not followed the normal order that we go. And I really enjoy this because now we're just stay tuned, I just get to ask questions. Because like, we're just coming to what blows the wind blows up, because that's how we do all of our interviews is we don't have pre we, FYI, everybody, we don't have questions prepared. Like what about this? What about this, so I think about the impact on the body, from chronic stress and anxiety, like you are like, when he was born, US you started you entered into your body started to adjust to the chronic stress. And when you said I lived on eggshells, and I developed this. So it also probably means you and you mentioned that it wasn't easy for your children probably wasn't easy for your husband. And so what are the steps because this is I think what a lot of caregivers would say, you know, you live in a state of chronic stress. And during the caregiving time, no matter how long it is long term, because you've had, he's 20 years old, 20 years of chronic stress. What's the impact been on you, on you, your body? And how do you guys manage that to try to keep the negative side effects of stress?

Unknown: 18:14

Well, I want to say that, you know, for 17 years, I was a stay at home mom. And so I'm not on the level playing ground with the working moms who are caregiving as well. So I had some space, you know, to be able to take care of myself whether that was you know, I was I ran for many, many years. I've just recently stopped in the last year. And by run I mean jog slowly, and I but I've always been committed to exercise. And so as my husband, we always made sure we had breaks down exercise and breaks with friends. I'm always taking a girls trip. I started that back when I was 24 with my high school besties and I still do that trip. And so we just always made that those things a priority. And I didn't ever feel guilty about that, either. I never felt guilty about taking a break or taking a girl's trip or having a date night with Chris or having a date night away with Chris because I knew that I had I knew the statistics about marriage and disability families and I we decided to be intentional and to fight for our marriage. And thankfully I married a really really, really great guy who's been hands on and involved. He never made me feel like I got to work. I'm the breadwinner. You stay home. You handle Ryan, right? He never made me feel that way in 20 years. He's always been hands on. And he's always supported me. And so it's just we've just been intentional and really worked on our mental health. We've done therapy we've done couples therapy, you know, I've done coaching. I mean, I've had, you know, a wonderful coach, spiritual therapist in my life. You know, I've done a lot of things. And I just want to say, we've had the resources to do this. And I know that it's not accessible to every caregiver, and I wish it were, I wish every caregiver could have therapy or coaching. I wish every therapy, every caregiver could afford a private babysitter, because we know that there isn't enough support and services for the disability community. And for the caregiving community. There aren't enough respite caregivers. That's right. Yeah, that are free and covered by the state or the county. It's, it's terrible. And so one a knowledge that I have some privileges in my life that I wish every caregiver had. Yeah.

Natalie: 20:52

I think and you know, what I respect that I think anybody who's listening to you will respect to say, and because I have privilege, there's not many people who could move to New York City for two months to have your husband be treated at the best Cancer Center in the US and probably world. And, and did it financially impact us? 100%. But did we were we able to do it? Yes, we did. And so I don't apologize for it. And what we do, and I think what I know you do is you advocate, you take that you take your space, and you know that your privilege, and then you say, I want everybody else to have the same opportunity I had. And that's why I have so much respect for you. And the organization because you're bringing to light, you're helping to do resources and help people figure out, how can I do this? And you don't have to feel guilty? If you have resources. It's what do you do with the what do we do with it to help to help other people who might not and get them access? So I just I really respect that. I think therapy is such an important piece, there was a piece that's been missing for Jason and myself, both when he got cancer, going through it, and then figuring out our new normal, because our life changed after. And I think people to recognize the value that therapy has and can add to your life to decrease conflict. I think it's super important. So I want to go back, like Ryan's a year old. And then you find out like, Was it intentional? Was was Kate intentional? Or was it like, crap, Chris? Or like, let's go back again, like a number. What, Jessica, I'm just gonna tell you, the fact that you and your husband are so intimate at this point is like, you're nailing it, because I'm like, I'm tired.

Unknown: 22:38

Right, right. Well, what was interesting that happened is after we had Ryan and I mean, we were doing a million specialist visits that first year, I should have counted how many specialists visits we had early interventions, therapists in our house, do three, four times a week, whatever for a few years. But I just, I just had this burning desire for a third. And I had, I know, I just did, and I wasn't done and Chris wasn't done. And I talked to other moms who had multiple kids, and a child with PW s and they said, you're going to be busy Anyways, if you have a desire for a third. Yes, it's a lot, but you're gonna be busy anyways. And so if that desire doesn't go away, listen to that. So it didn't go away. And I think also because even though right, we're in the thick of it, right with specialists, and you know, Ryan Hudson surgeries at age one, you know, he had the feeding tube his first year. I mean, it was very involved. Ryan didn't cry his whole first year of life. So I didn't have that stress of a crying baby or a baby in pain, sleep deprivation. Oh, easy going? He was so you know, he was just so sweet. You know, which was also heartbreaking at times, because I was like, Do you know me? Do you see me? I know you do. I know you're bonded to me. But I'm not getting the reciprocity that you would normally get with a baby. Right? But that contributed to like, well, I can do another baby because it wasn't like a screaming newborn, or baby for that, you know, year trying to think it was a little over a year, maybe a year and a half. He was a year and a half when I got pregnant with Kate. Also to add to that story, though, was a year after Ryan was born. My mom was diagnosed with terminal lung cancer. And she moved in with us and we took care of her with the help of my sisters and of course hospice. We lost her three months later. And, and it was also after that, that I I just I had that burning desire for a third child. I wanted multiple kids. I wanted Luke to have a sibling I wanted Ryan to have more siblings to grow up with To, you know, love him, challenge him, stimulate him and be there for him. And so I always say the third one sends you over the cliff, but it's worth it.

Natalie: 25:13

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JJ: 26:05

you have a one year old you have Ryan and he he of course is special these definitely and but your mom or your the closest to your mom location wise. And so that's why she moves in with you all because you've got a lot going on then if

Unknown: 26:20

you got a lot. It doesn't make sense, does it? When I look back, I was yes, I was the closest geography wise, but it wasn't. I mean, it just made sense because we had the space. Okay. And I was home. And I feel like I know a lot of medical things because of working in clinical drug trials and everything that we had been through with Ryan. And it just, we knew it was short term. We knew it wasn't going to be like a 10 year battle like with, I don't know, Parkinson's or a 10 year battle with cancer. It was terminal. They said six months in my mind. I thought it was going to be three or four months and it was three months. So she only lived with us for two months. And we had hospice coming three times a week. My sister came every weekend. My other sister came also. So I wasn't doing it alone. It was a very intense summer, but I wouldn't change it for the world. Yeah.

Natalie: 27:24

Okay, JC Did you notice that? She said, my sister and then she said,

JJ: 27:28

my sister. So yeah, I need to know about that as well. So how many do you have? Two other sisters have my how many? How

Unknown: 27:36

many? How many do I have to count? So I grew up in the Brady Bunch on steroids kind of fantastic. Where were my parents each had three kids, two boys and a girl two boys and a girl found each other had my sister Jennifer and I Jennifer and I are 11 months apart. I was actually born three months early and 1970 if you can believe I don't even know how I survived. And then my dad and mom's split and my my dad married Barb, who they've been together now forever. And Barb had two teens at the time. So I have six half siblings, one full sister, and a stepbrother and stepsister. Now it was always my mom's side or my dad's side of the family. So all 10 of us were ever together in one room. Yeah, but yeah, that's I have a lot of sisters and brothers. I love

JJ: 28:26

that. That is That is interesting. So so there was a lot of it seems like with your other two sisters and your mom there was there was support there to help.

Unknown: 28:35

There was support. There was I wasn't doing it on my own. I was I don't believe in being a martyr. Yeah, mom or martyr.

JJ: 28:42

I'm so interested in your husband the you know, you said he's wonderful. Like he's

Natalie: 28:47

got that like he's like job. Yeah. Like job. Because

JJ: 28:52

I know if I had said, you know, we've we've left and mom has she stayed with us occasionally. Of course, Bob has Parkinson's, but I'm like, now if I raised my hand and said, Hey, girls, Mom's gonna move in. Hey, hey, Dexter, Mom, my husband. He'd be like, No, I'm gonna move you know. So your husband, we will give him some accolades as well that he's you guys have you guys are amazing. So that is really?

Unknown: 29:15

That's right. I am very lucky. Very blessed. But yeah, who I married. Yeah. Very true. Yeah,

JJ: 29:25

awesome. Yeah. Awesome. I'm gonna go forward. Natalie. Am I okay to go forward? I mean, we're backwards

Natalie: 29:31

or forwards. So much fun. So many notes.

JJ: 29:33

Oh, my goodness.

Unknown: 29:34

Oh my gosh, I love it.

Natalie: 29:37

I was like a jot down things that I love out of

JJ: 29:40

these years out of these because Ryan is 20. Now, over the years, what are the things that you saw or felt like we're missing because it's led you on a mission? Basically, it's changed your life to want to help others. So tell us about that.

Unknown: 29:57

Well, I think you know the bird Have we are brave together wasn't born out of my own scarcity, it was actually born out of my own abundance, because I had invested in community and creating community, whether that was in the private Willi syndrome world, or within our school district, finding other, you know, disability families to connect with to navigate, you know, the school district or navigate the regional center, which is in the state of California is what our state agencies are called, there's 21, in the state of California anyway, navigating the systems, right, that support our kids is quite a mountain to climb. And so you have to have other people in your life to go to, and you have to have other people in your life who get it. Because even though I consider myself a girlfriend's girlfriend, and even though I had great girlfriends coming into this, you know, diagnosis with Ryan, there are some people who don't get it and can't get it and have a disconnect with your pain, their losses and changes in relationships and friendships, and just what I had experienced and what Chris and I had created for ourselves in terms of community and having other families around us with the same diagnosis or just, you know, with diagnoses. It was, it was powerful to know that we weren't alone. And I wanted that I want that, for every caregiver, to have community to have connections with other people who get it, who can ask anything and say anything, and not be judged. And if you need to seek resources, if you need to vent about your day, if you feel your child does awful today, and tomorrow, again, you'll think that they're amazing. Fine, we will listen to you, we will support you, we will validate you and and because I had experienced that and not, you know, I you know, of course experienced invalidation of people who didn't get it, I sought to create something for other moms just to be able to show up to so that they wouldn't have to recreate community for themselves.

Natalie: 32:12

Yeah. Wow. Hmm. So you have groups around the country then though? Correct. And are you within the US? Or do you go further?

Unknown: 32:23

We go further. So our organization represents all 50 states and 24 countries with our membership, we're up to about 2300 caregiving moms, we have 25 connection circle leaders, some of those lead for everyone and we are brave, we call them the all member virtual connection circles. So we have one that's diagnosis specific, that's a virtual one. And we have most of them are by city or state or country. So we have one in New Zealand and one in Australia. Both are virtual for anyone in those countries. And then we have San Diego Los Angeles, Orange County Long Beach. We've got a couple in Kansas, Texas. I'm trying to think where else lots of places

Natalie: 33:17

do you have any in the cuz we were on UK health radio. Hello, listeners. Um, do you have any in any groups currently going on or any any connections over there? Because I bet there's all kinds of folks who would love to be connected? Yes,

Unknown: 33:33

they're there I have had people reach out to me who are in the UK we don't yet have a connection circle leader. So if someone is listening, and they would like to be a connection circle leader wherever you are in the world, honestly, for we are brave we train you we have curriculum, we support you, we mentor you, you're part of a leadership team. And it's it's a really wonderful experience. If you have the time to do that. Whether it's virtual or in person or a combination of both we think in person is best but we know that sometimes virtual is all that some people can, can do. Well,

Natalie: 34:13

we are brave is not only just for a specific diagnosis,

Unknown: 34:17

it's not it's not it's for if you are a mom, caring for a child, teenager or adult, any age with literally any diagnosis, whether it's common, or your child is the only one with that diagnosis. And if your child struggles with mental health challenges, even which we don't usually sort of fall into our special needs or disability can we don't you are welcome to be a part of we are brave together so if you have child any age with any struggle, we welcome you we have a chair waiting for you. Wow.

Natalie: 34:51

All inclusive. It is all

Unknown: 34:53

inclusive. It is if you're a sister caregiver, a grandmother caregiver and and caregiver. You're welcome to be a part of But is there any guys, there isn't we do have some resources that we can direct dads to. If if they're if they're looking for that we have tried, we've done some dads nights, we did a also a support group for one year, but it's hard to get the dads to come. right even though they need support. Yeah.

Natalie: 35:19

So and I was I think a lot of that may be just because of culture. I mean, if you think about it, the moms are, I mean, you're the mama bear of your tribe. I mean, you really think about it. You said I am the most diligent as far as I am the most like keeping the eyes on the you know, whether it's the frigerator, or whatever, you have been the mama bear, and most of the moms or the women tend to be the lead caregiver. Now, I don't want to exclude any of our guys, because there are guys on here who are caregivers, we love you, like, we love you got all kinds of people we'd like we know you can. But you're right, it is harder to draw them out. To and that's a hard conversation to have, because then you've got other stuff, the man step.

Unknown: 36:11

Right. I think it's important to acknowledge the dads and that the dads do need support. And they need to be surrounded by other dads who who understand what they carry. And

JJ: 36:25

it sounds like to me, and this is something I love about your story is that everything you've done has been done intentionally. When you talk about your marriage and not wanting to be the statistic and wanting to watch Ryan wanting to watch the kids as they all grew up. You knew what you wanted the outcome to be Jessica. So tell me about where you all are today. But also, where you see your future. Like what because you're intentional. What's what's the plan? Okay,

Unknown: 36:57

question. For my family or for we are brave together?

Natalie: 37:01

Oh, no, let's go family. Let's go back here.

Unknown: 37:03

We're back to family. Family. What I envision? Well, Chris and I have always talked, my husband Chris has and I have always talked that Ryan would live separately at some point. I don't want to be his forever caregiver. Neither does Chris. I don't feel bad about that until I stop and think about the moment when I would drop him off. And then I can just call. But I just think it's age appropriate for Ryan to live separately at some point in his 20s. Yeah, I think it's better for him to be set up before Chris and I go or anything happens to us. We don't expect Luke and Kate to be his caregiver, we they will have to be co conservators. And they will have to be decision makers. But we will not expect them to be his daily caregiver unless they choose it. When we will have things you know set up so that he can be taken care of. We have a special needs trust, currently working on updating that. And, you know, we want Luke and Kate to be able to live their life and my daughter. I mean, both are so sweet. They're amazing kids. Kate has offered to live with Ryan. And I said well not before you're 30 Definitely not before you're 30 you need to go to college, you need to travel, you need to experience life, we're not going to just let you step right into that after high school or after college. You need to go and live your life and we will not let you take on that role before you're 30 and maybe by then her her mind will change or maybe it won't and it will be a beautiful thing but it's it's not caregiving for Ryan is not easy psychologically. And they get to choose that's that's just how that's what we've said I know every family is different. But that's what we've said from the beginning. And I look forward to the day when I have freedom and we are empty nesters ish, you know where we have more freedom to come and go and, and less responsibilities on a daily basis.

JJ: 39:08

You all have you have the right now you have a care team. And I know people talk about that takes time to put together but you have gotten now we're going to talk about the 16 years. You have you have gotten and I love that you say I can't feel guilty about a lot of things when you talk about going on vacation with the two kids or taking Ryan separately. You have gotten to a point where you've been able uh, you guys left you laughs that you've left but you came back

Unknown: 39:38

left ran away out.

JJ: 39:40

What got you to that point, Courage wise and tell me tell me what happened when you got back? I mean, oh, yeah.

Natalie: 39:49

What was it like on the way up while you're gone?

Unknown: 39:53

Okay, so, what you're referring to is that Chris and I got away too. London in the countryside and we were gone for seven days. We hadn't been away alone for that extended amount of time in 16 years since our 10 year wedding anniversary when we went to Mexico for six days. So, Chris and I have always done date nights away. Always, we've done two nights away. I don't know if we've ever done three nights away together. But we've done three nights, four nights, five nights with Luke and Kate, away from Ryan. We even though I come from a large family, even though Chris has family and my in laws were very, very helpful when the kids were little. We lost my mother in law when Kate was three. So we we've been through a lot anyways, I won't go down that path. But we don't have family that comes and takes over. And so from an early stage of our marriage and family life, we started hiring people. And then we started using the respite hours that were given to us. Right, and we just always have, and we've hired, you know, aides in the school district that wanted extra hours. We you know, we've just always networked and tried trusted and trained new people to work with Ryan, have there been flaps? Of course, have there been people that have come into our home that were not the right fit? Yes, of course, we were always willing to trust and to try and to train new people. Because we wanted those breaks, we wanted those times. With our other kids, we wanted those times together. And we we weren't going to wait until family offered. And you know, I think too, I don't want to throw a family under the bus. You know, once Ryan started engaging in difficult behaviors, we were afraid to ask family, that's fair. And nobody was necessarily offering Maybe I was too vocal and to open and blogging about our journey. But anyways, you know, we just, over time, always built are added on or exchanged, you know, our care team. So, you know, when people leave, it's very hard that you love and trust, but they move on to other things, or full time teaching jobs, or marriage and kids or what have you. But we have a couple of caregivers that have been in our life, one for 10, one for six and one for four. And we hold on to them and treat them like family. And I'm just so grateful that they love Ryan, and they love our family. And that, you know, they're willing to do this. So we start with, okay, one night away, how did it go with that caregiver, then you try it out with another carrier, try it out with another caregiver. And then you get enough people on your team that you can split it up, and you can be gone for four or 567 days. So it was a process. It took guts for me to ask for that much extended help. That took a while even though we've had these people in our life, for so long, I had to gradually build up to us being gone for seven days. And when I told well, Ryan Ryan doesn't mind when we're gone. Pay separates easily. As long as he knows the schedule of who's coming. And that there's a variety of people, if there was one person for seven days, he would not be happy. So I Okay, we break we break it up, you know, and then if we can get like grandpa to come and take him out to dinner one night, you know, to help break it up as well like that kind of thing. It really, it really helps. What was hard this summer, we did two big trips this year. It was really, really, really big, and really extra for our family. But we took Luke and Kate to Maui, this is before the fires. And when I sat down to tell Ryan two days before we left, because you can't tell Ryan, anything like that way in advance. He cried. He said Why aren't you taking me? Why? Why don't I get to go? I could have lost it. But I stayed composed. And I said, Ryan, I think you prefer one on one trips with me or with dad, and it's hard to lock a kitchen or on a family vacation. And I don't know that we can lock this kitchen and keep you safe. So we're not we're not bringing you because it's not safe. And you said you need a break for me. And I said, Well, Ryan, you know, when we take a vacation without you I get to sleep in. And I don't get to sleep in if I'm taking care of you. So I tried to word it as kindly as possible. And be honest. But that was a hard conversation and he cried for about 10 minutes and then he adjusted and then he was fine after that. And I did take him on a one on one trip and Chris did take him on a one on one trip to make it up to him. And he loved it.

JJ: 44:56

Yeah. So when you guys get back from your seven days Everybody did. Did the house catch on fire? What anything you plan for this 16 years was because people have guilt and they have regret. And they worried and I made the right decision. What was the end result?

Unknown: 45:12

The end result was beautiful. I came home to candles lit a clean house, the diffuser going. And, you know, kids happy to see us everything went well, there was no emergency.

Natalie: 45:26

Everything went beautifully. I love that. And what it did was it just reinforced that you guys will be able to leave again. And it won't take 16 years to take another 710. And maybe we'll go 10 days. Yes, please. Oh my gosh, what if you went for like two weeks? Oh

Unknown: 45:43

my god. Right? Well, and the other piece to this that I want to, you know, hopefully encourage or inspire caregivers, when it's, I mean, it depends on your child, right. But I think it's good for your child to see that they can survive without you for a couple of days. Yeah, or five, or seven. So whether you take a day off, or two days off, or a week, if you have that luxury like we did, it's empowering for your kid that they can survive, whether it's the other parent that takes over for the day, or two days, or grandma or a friend or babysitter. It's I think it's it's a it's a good, it's a win win. It really, really, really is you can really spin it instead of saying, Oh, I feel guilty, because I call it false guilt. Because unless you made a deal with yourself, that you would never leave your child or the person that you're caring for. Because it's wrong, because it's against your values, then there's actually nothing to feel guilty about, because you're not going to leave them with somebody who is not qualified. Does it mean that everything goes perfectly? No. And we've had things not go right, and things have gone really wrong? When Chris and I have been away for a date night, but that doesn't make me feel like I can never leave again. Because mistakes happened. That's that's caregivers do feel that way. That's how I feel like if anything goes wrong, I am a terrible person. And I'm never leaving my child again, or whoever it is that you're caring for. And that's just not the truth. Oh,

Natalie: 47:19

I hate that we have to end because our time I'm like, Oh, we just started. But um, you know, I think what you said, because you mentioned you know, you can leave your child. The reality is is this relates to everyone. Like I can leave, I would leave Jason to himself. Because I needed to walk to Central Park for two hours and have two hours of sanity to myself, or Emily was allowed to take, she would take a two hour bath. I don't know how their water bill was through the roof. But she would take a two hour bath. And she just needed that you can't feel guilty. And here's the thing, no one is ever going to do it like you do it. So let that go. Just let it go. And if it goes wrong, as long as nobody gets hurt, really I'm talking about really hurt, doesn't burn down. Everything can be resolved and recover, we can recover. So Jay, it is time. Okay. It is time for Sister questions.

JJ: 48:19

So I love to laugh at our most difficult situations. And sometimes I have difficult situations with mom when we get out in public. So it sounds like you've said, you know, Ryan has a lot of anxiety, we can have some behavioral issues. How do you get through those? Like, is there one that kind of pops up in your mind? Because parents, you know, we have those issues, when that pops into mind? And how do you handle that?

Unknown: 48:43

Well, well, sometimes I handle it well. And sometimes. I think I think just in recent years, I had to come to the place of acceptance that I will never be able to control his anxiety or his behaviors, even with all the behavior training, even with everything that I know, it's going to show up no matter what. And it doesn't mean and and and it can activate and trigger me. And that doesn't mean I haven't done my own growth work. It's just means I'm human. And I'm his mom. Yeah. So I will confess that I am not good at finding humor in those really intense moments. Maybe after the fact when we talk about certain scenarios, then we might I might be able to find the humor with the help of my family. But I I I mean there's definitely a lot of cute things that Ryan does and says, that are so sweet and make me smile and warm my heart and I'm so grateful that I do get to have those moments with him. Yeah, I mean, he's, you know, he says to me all the time did the moms feel loved? Who says that? says that? I love you says that after so many we are brave We've retreats and events and things that I've been a part of and I come home mom, did the moms feel loved? Oh, I mean, he's just a doll. Yeah.

Natalie: 50:09

You're it's totally fine. To not be okay. Like I honestly, the the meltdown especially. And it's I think it's even harder. It's it's societally accepted for toddlers to have a tantrum, it is not normal to see a young adult have an equivalent tantrum. And that's hard. When you can't, you know, you can't control it. And I think the first step is, I accept that I can't control this, right? Yeah, he's gonna have to work his way through it. He's gonna have to do the full thing. Okay, one more question. And it's going to be fast. What is your favorite guilty pleasure that you do just for you? Favorite

Unknown: 50:52

guilty pleasure. Being in bed and watching TV or Netflix or Hulu? Just like, yes. Okay, favorite dish. I'm really guilty, like a, like a glass of wine. Oh, that's

Natalie: 51:04

not my

Unknown: 51:06

favorite show. Okay, right now I'm watching Abbott Elementary. But my favorite all time is Ted lasso. Oh, hands down. I mean, oh, and we did a private Ted last tour on our trip. Oh, later. It was awesome. I'll send you.

Natalie: 51:24

Jessica, this is fantastic. So we love you. And we think you are so amazing. We are going to have all the resources in our show notes. And we'll have it on all of our socials, to make sure that you can get connected if you are in the UK, and lots of other countries. We don't care where you're from where absolutely all inclusive. I know Jessica loves that, too. And so definitely connect with Jessica. And thank you so much. And send her love to your husband, and to all of your children. Oh,

Unknown: 51:55

thank you so much. This has been so great. Can we do this again? That's wonderful. It's just wonderful call.

Natalie: 52:02

I know. Right? Total sister calls. Great. I love it. Thanks so much. Have a great day. And we will until we confess again. We will see you next time. Thank you. Bye bye. Well, friends, that's a wrap on this week's confession. Again, thank you so much for listening. But before you go, please take a moment to leave us a review and tell your friends about the confessions podcast. Don't forget to visit our website to sign up for our newsletter. You'll also find the video recording of all of our episodes on the confessions website and our YouTube channel. Don't worry, all the details are included in the show notes below. We'll see you next Tuesday when we come together to confess again, till then take care of you. Okay, let's talk disclaimers. You may be surprised to find out but we are not medical professionals and are not providing any medical advice. If you have any medical questions, we recommend that you talk with a medical professional of your choice. As always, my sisters and I at Confessions of a reluctant caregiver have taken care in selecting the speakers, but the opinions of our speakers are theirs alone. The views and opinions stated in this podcast are solely those of the contributors and not necessarily those of our distributors, or hosting company. This podcast is copyrighted and no part can be reproduced without the express written consent of the sisterhood of care, LLC. Thank you for listening to The Confessions of a reluctant caregiver podcast.