But just to really encourage anybody who’s listening, like, these families are often drowning, and if you can just step in and offer something, that means the world to a family like mine. We, we feel like we’re being seen and um I think that’s, that’s a big thing with families like ours. We just feel like we’re unseen.

Are you caring for others while working and trying to live your own life? Wondering how to find the time for your own health and happiness? Well, you’re in the right place. The Happy Healthy Caregiver podcast, which is part of the whole Care Network, is the show where real family caregivers share how to be happy and healthy while caring for others. 

Hello and welcome. I’m your host, Elizabeth Miller. I’m a fellow family caregiver, a care advocate, a professional speaker, author, certified. caregiving consultant and certified senior advisor. If this is your first time listening, thank you for being here. This is a show produced biweekly to help family caregivers integrate self-care and caregiving into their lives. Each episode has an accompanying show notes page.

If you’d like more detail about the topics, products, and resources we speak about, or you want to see any of the related photos, you’ll find the show notes by going to the website happyhealthycagiver. com and underneath the podcast. menu, click the image or episode number for today’s show. The link for the show notes will also be in your podcast platform’s episode description. Now, let’s get to it. Let’s jump into this episode. 

Hi, everybody. Thanks for being here today. Before we get into this wonderful episode with Jess Ronnie, I have a few things on my own that I would like to share with you. First of all, I want to say that I am grateful for you. I am grateful for you listening and I do love it when you share ratings and reviews because that’s How other family caregivers can connect to the podcast and connect to the guests that we spotlight on this podcast. Your ratings and reviews have helped expand the show’s reach and impact more caregivers’ lives by connecting to the resources that we offer. If you have not yet left a rating and review for the Happy Healthy Caregiver podcast yet, please consider doing so by visiting HHC Pod review.

This can be a simple sentence or two sentences or it could just be simply a. 5 star review, like the one that Jen P shared. She said, this is a go to podcast for anyone caring for family members in our complex times. Thank you, Jen, for leaving this rating and review. Your kind words and your stars are like little tips in my virtual tip jar. I’d like to thank our episode sponsor for today, Air Patient Voice. Did you know that you can earn cash in exchange for your opinion?

A rare patient voice or RPB helps connect researchers with patients and Family caregivers for over 700 diseases and conditions. RPV provides the opportunity for you to voice your opinions to improve medical products and services while helping you earn cash rewards. If you’re interested in joining the RPV panel, head over to rarepatient Voice. com/happyhealthy caregiver. I wanted to share what I’m reading right now. Well, I’ve committed to finish all of my book club books because frankly, I love to just. Participate in the conversation when we attend those, and we recently read the seven-year slip by Ashley Poston.

It was nominated for the Goodreads Choice Awards in the famous romance category in 53, and it had an average rating of over 4 stars. Here’s the premise. It’s an overworked and a grieving book publicist with a perfectly planned future. She hits a snag when she falls in love with her temporary roommate. He exists in the Past 7 years ago to be exact, and she quite literally lives 7 years in his future. Since it’s a romance, you kind of have a feeling that they’re gonna fall in love and hope that they find a way to permanently be together.

I listened to this one, actually, I listened to it on Spotify, which I didn’t know as a premium member, you could get your audiobooks there, and I found it to just be OK. It’s a magical realism, contemporary romance story. I found there to not be enough romance, frankly. Between Clementine and Ewan, and my book club said it reminded them a little bit of a movie with Sandra Bullock and Keanu Reeves called The Lake House. I think this book was a bit overhyped for me and I gave it there for 3 out of 5 stars on my Goodreads rating.

My favorite thing that I want to share with you this week is a cologne spray, frankly. It’s called Emmarod. I’m not really a perfume person. Most of my life I’ve been more of a scented lotion type of person. My mom was a perfume person though. She had two scents that she wore. All the time. Chanel number 5 was her going out scent and definitely makes me think of her when I smell it. My sister Suzie likes this scent too, and so other family members of mine wear it.

So I get little whiffs of mom when I smell that. And yeah, for everyday use, my mom really wore Emirod. She was an Erod person. I’m not positive, but I think my mimi or my mom’s mom was one too. Emarod is made by Cody, and it came out in the United States in 1921. It has Top notes in the fragrance of bergamo, lemon, and orange, which maybe that’s why I like it. It’s all of those uh those scents that I really like. When my mom passed away, I kept this bottle of hers.

So that I can sniff it, frankly, and think of her. Usually I keep it on my dresser, and when I’m putting on my jewelry, sometimes I just take a little smell of it. Sometimes I have a little chat with my mom. It just makes me think of her and it gives me an overall good feeling. My mom also had a great tip. She said to keep your old perfume bottles, remove the top, and put them in your underwear drawer or a drawer where you want your things to smell better.

So, So that’s a great way to kind of stretch the perfume for even longer. I am gonna link to my favorite thing, Emmarod, and while I’m keeping my empty bottle of perfume, it’s still a scent that’s available that you might want to check out. Let’s meet our guests in the spotlight. In this episode, I am shining the spotlight on Jess Ronnie. She shares her powerful caregiving journey from supporting her late husband Jason through brain cancer to raising her son. Lucas, who lives with profound disabilities, alongside 7 other children.

Jess is an entrepreneur, author, speaker, podcast host, documentary producer, and passionate caregiver advocate. She opens up about the stark contrast and support she received during different caregiving seasons and how anger fueled her resilience as a young widow with 4 children. Jess also shares the incredible story of how a perfect stranger connected her with her now husband, Ryan, despite them both living in different states. Now, in another season of a major transition, Jess and her family have created a group home where Lucas is thriving. With newfound space in her life, Jess is focused on healing from years of trauma, being present, and intentionally choosing which responsibilities to Embrace or surrender.

This episode is packed with valuable caregiver resources, inspirations, and hope. And for a limited time, head over to Happy Healthy caregiver on Instagram, where we are sharing for the first time this podcast release and figure out how you may be eligible to win a copy of Jess’s book. I hope you enjoy the show.

Hi, Jess. Welcome to the Happy Healthy Caregiver podcast. Hi, thanks for having me. I’m so excited to kind of dive into your story, and I know we’ve got a lot of resources that we’re gonna be able to share with folks.

We do kick off the episodes with words of encouragement, empowerment, inspiration from stuff I’ve collected over the years. I call it in the happy healthy caregiver jar, so I wanted to get your thoughts on today’s It says, things work out best for those who make the best of how things work out. So things, things work out best for those who make the best of how things work out. And that’s by John Wooden. And I always like to look up these people. I’m like, who are these people that are coming up with these quotes?

And so he’s a, my husband would probably know, but he’s a legendary basketball coach. I did not know that, but I didn’t know that either. Yeah, but what are your thoughts on that? Things work out best for those who make the best of how things work out. You know, a word that has been a guiding force for me the past couple of years has, has been surrender, and really along with surrender is acceptance of what is and what is not. And I think that’s what that quote is saying, surrender into what your life looks like in this moment and find joy and stay present and Go with the flow, go with the energy, and um you’ll be amazed at what doors might open because of your surrender and your acceptance.

Yeah, it’s, it’s hard, I think, I feel like especially as caregivers, we We want to hold the rein so tight. I know I did anyway, I wanted to have control of everything. And then coming to the light of realizing that I really didn’t have much control of anything. And once that kind of happened, I accepted and let go of it, to your point, like the flow of things, um, and even with the flow of my business. the flow of caregiving and family and all of that, like, yeah, letting go.

So I, I, I love that your focus word is surrender and um and then acceptance. So, so nice. Tell us a little bit just about your, your, your personal caregiving story and your personal caregiving experience. Yeah, um, honestly, I, I feel like I really became a caregiver in 33 when I went to what I thought was a routine ultrasound appointment for my second child. And it was there that we were told that he had experienced a stroke in utero and there was very little hope. Um, he did hang on and I hung on and I gave birth to him on August 12th.

He came out screaming with life and after undergoing brain surgery and spending two weeks in the NICU, we were sent home with our baby with kind of this umbrella diagnosis of special needs. Um, And honestly, I didn’t even really consider myself like a special needs mom. I didn’t even consider that Lucas had disabilities. I was just thrilled to be going home with my miracle baby, and we were just going to do everything possible to give him the best life that we, we could possibly give him. Um, and we went home and life was very challenging.

He had a 2 year old size head at birth because of all of the cerebral spinal fluid buildup in his head. Um, so he never slept and I never slept because I was terrified if he would happen to flip over on his belly in the middle of the night, he would suffocate himself, um, delayed in every aspect of life, but I just kind of chalked it up to his head size, you know, of course, he can’t crawl or walk cause he has this huge head. Um, he’ll get there, his body will get there and just super optimistic about it all and Um, we finally kind of got into our groove when he was about 3 and I ended up pregnant again with our third child who had turned out to be a daughter, gave birth to her in 2007, and that’s when my husband Jason started having all of these health problems, um, extreme weight loss, disorientation, vision problems, and he ended up passing out at home one night, was rushed to the local ER where they discovered a baseball sized brain tumor.

Um, he underwent immediate surgery and it was benign at that point. So we were told we could just watch and wait. We didn’t have to pursue radiation or chemo. And we were told, you know, sometimes these tumors don’t come back for like 20 years. So just go home and live your life. And that’s what we did. We went home, um, ended up pregnant again. We did want 4 children. And um a couple of months after we found out I was pregnant again, his cancer returned. And, um, this time it was malignant, and it was a glioblastoma.

And he, uh, passed away 14 months after that diagnosis, exactly 1 month before our infant son, Joshua turned 1 year old. So at that point, I was a 453-year-old widow with 4 children under 7, including Lucas, who had profound disabilities. Mm, wow. Wow. So Lucas was your, was your 1st 2, 2nd, he was your 2nd, um, and wow, 33 years old, with a widow with 4 children, and Uh, you know, caring for kids, caring for a husband, juggling all of that at that time like. How did you do it? Like what, looking back like.

Uh, you know, I look back and process it too, and I don’t even really know. I mean, I had 3 in diapers while my husband was in hospice. You know, I’m nursing a baby and wiping my husband’s sweaty brow as he’s dying. Like, I, um, there was a lot of anger during those days, you know, going back to that word surrender. I really only surrendered in the final two weeks before he passed away, um, but in those 83 years of That intensity of life with 4 children, including 1 with numerous disabilities and a husband who You know, brain cancer is a very cruel taskmaster.

Um, and, um, anger, looking back was kind of that fuel source that I tapped into. Uh, because anger gets you out of bed in the morning, you know, it keeps you going. It’s not a super healthy fuel source, but it does keep you going. And now, um, in retrospect, you know, I’ve learned to tap into other fuels for that energy when life begins to feel overwhelming. Um, but I had a lot of help during Jason’s cancer journey, um. Like I, I didn’t cook a meal for 3 years.

I didn’t do my laundry. I mean, people were willing to take my children outside of Lucas. Um, Lucas’s needs kind of made him challenging for a lot of people, but they would help with my other kids. um. And so, I don’t, it was literally just day by day, uh, getting through day by day, um, and then that surrender component coming in really about two weeks before Jason passed away, where I was like, I am not in control. God, I do not understand why you would give me such a heavy burden on the side of eternity, but I surrender to your plan and your will for my life and, you know, 14 years later, it’s pretty incredible to see what he’s done with my caregiving journeys.

Yeah, yeah, I appreciate you sharing like how your faith was questioned, how you feel angry, like definitely all the stages of grief, right? And we experience grief even while people are still alive, right? And we’re we’re losing pieces of what we thought our life was gonna look like and, and trying to process all of that. Um, and I’m so glad that you had lots of help, um, physically, right? Like emotionally, it’s still a really hard journey while you’re Um, dealing, and, um, your, your late husband’s name is the same name as my husband, and then you’re like talking about NICU and my daughter is a NICU nurse, so I hear all of her stories about that.

Um, so it’s um Yeah, you’ve been through quite a bit in your, in your 33 year old widow. My mom was also, so my mom has a, we had a blended family. Um, my mom had 4 kids under the age of 10 when her husband died. Of, um, not brain cancer, but leukemia, and then she married my dad and had myself and my sister. So we ended up being a family of 6 and she called my dad her hero, and I, I feel like, um, you know, your, your life took a different twist too.

Do you want to kind of share where you are today and what’s going on there? Yeah, it’s funny, um. At Jason’s funeral, his mom actually pulled me aside and said, I’m praying for your next husband. And I was like, what? And she said, you can’t do this life alone. I mean, 4 children under 73, and I was like, well, you know, if it happens, it happens, and didn’t really think much of it. Well, 3 months later, um, I took my kids out for Halloween, and, you know, we all got dressed up and I took all the pictures and post them, posted them on Facebook, so everybody I was, you know, living and doing my best and I still look at those pictures and I just have bags under my eyes like I am just exhausted it took to get to the, um, and not to mention the three years of just absolute overwhelm, you know, caring for Jason as he went through brain cancer.

Um, and I came home and I checked my blog, which I had kept updated through the years. Um, we had had a pretty significant following of people who were praying for us and, you know, offering to help and checked my blog and a stranger from Pennsylvania, um, left a comment and just said, I don’t know why I’m reaching out to you, but there is this young widower in Oklahoma. He lost his wife to brain cancer 4 days after your husband died. He has 3 young children and he’s not doing very well.

And I just think you could be a source of encouragement to him. So I found his blog and left a comment and woke up the next day to an email from this man, Ryan Ronnie. Um, and that started numerous emails and phone calls and uh we were engaged a couple of months later. Married in 2011, he moved to Michigan with his three kids. We adopted each other’s children, and then we went on to have our eighth and final child together in 2015. And we all lived happily ever after.

Yeah, I mean, an amazing story, right? Like you, your life gets completely um flipped upside down and rolled all around and all of that and then This person in Pennsylvania, you didn’t even know this person, or you know, she’s, she followed my blog in Michigan and Ryan’s blog in Oklahoma and just kind of connected the dots and was like, you know, I think you guys could help each other. Um, so his, his wife’s journey with cancer was very fast, uh, from diagnosis to death was 3 months. So he was just really reeling and struggling, where I had had 3 years to process and go through all the stages of grief and really ultimately accept the fact that I probably would not be celebrating a 50 year anniversary with this man who I had married.

Um, and so, you know, because his was so quick, that, that was definitely challenging in our new marriage, you know, blended is not easy at all. Um. I don’t know how much you witnessed in in being added to the family later on, right, because I would say my 9 year old too who was added probably would be like, it’s fine, it’s all good. Everything’s great, but those first couple of years can be very challenging. Yeah, yeah, I think we all, you know, every kid has a different perspective.

I think of their family situation. Um, and there is a 103 year gap between me and my brother that’s ahead of, ahead of me, and then they had another one behind me so that we would have, you know, kind of be. Yeah, and you know, like my older sister is um She is kind of, I call her my cool mom, like she’s 11 years older than me, so she’s, you know, helped kind of, she bought the tree house wood and she would do all the things and I’d have the hard conversations with her that I wouldn’t have with my own mom, you know, I was afraid, afraid to kind of bring those up.

And, and then she ended up getting married and having kids late. I got on the younger side, I married my, my high school prom date and So we end up having kind of our families around the same ages, even though that we have this kind of gap in age. So, but I do find it, you know, we talk a lot about what that looked like and it’s interesting and um my mom actually wrote a children’s book series called The Wadoodles of Hollow Lake based on this lake in Michigan that we go to, because she was trying to process grief for her kids at that time who were, you know, the youngest was like 2, but the oldest was around 10.

And there was really no books back then of like explaining death and dying to children. And my brother, I have a brother with special needs that now that my folks are deceased, that we care help care for him, share the care he’s was born with um on the autism spectrum and with an intellectual disability. Uh, so he had extra, you know, Um, difficulty and kind of processing all of that. So, anyway, my mom ended up writing this Wadoodles of Hollow Lake to kind of um portray human type of Issues and problems and concerns in an animal kind of way.

Almost I can picture it like a Disney film. So, and that was super therapeutic for her, right? Like writing out these stories and she used to read those to us, like the, the typewritten chapters um when she was, uh, you know, that was kind of her self-care, frankly like looking back back on that. So It’s interesting all of the different, different parallels. Well, you had talked about Lucas, I know, and um you know, definitely have your caregiving experience with your late husband, um, and now Lucas is what um 2020 years old.

Holy moly, yeah. So, um, and you say he has profound disabilities like what what does that mean? Um, he just has a a whole long list of disabilities. Um, yeah, a cocktail, um, intellectual disability, um, you know, the experts say he’s at like an 18 month old level. I think that’s open to interpretation. I see some things in him that seem far above that 18 month old level and some things that maybe seem accurate, um, severe autism, so nonverbal incontinent, scoliosis. Chiari malformation, um, limited mobility, limited vision, uh, hydrocephalus, tethered spinal cord, um, just really needs a total care for the rest of his life.

OK, so lives with you and your, your family, you and Ryan and or he lives outside. Did you find, yeah, tell us kind of like what your adult plan is because I’m fascinated by it, like. You know, now I’ve got a 62 year old brother, right? Then we’re trying to navigate life for him since my folks have been deceased. But yeah, what, what does life look like for you all with, um, and managing Lucas’s career as well. Uh, when Lucas went through puberty, he became pretty aggressive and um would lash out even uh towards his siblings, towards, towards us, um, he became Um, aggressive towards himself, lots of behavioral challenges, and like I mentioned earlier, I never even really viewed myself as a special needs mom until he began to go through puberty, and that’s when I really started to grieve, like, the fact that he, he wasn’t typical, and this was not a gig that was going to end and not only was it not going to end.

There weren’t any options for families with children like mine. And so probably around 15 years old, I started to think through our options, like what would that look like um if we were to eventually create a home for him. And when we lived in rural Tennessee, I was even um printing off these huge booklets, you know, from the state on how to create your own group home and just combing through them and highlighting everything and um just really processing and we ended up moving back to Michigan. Um, where we made it apparent to our community mental health organization that we wanted him placed on the list.

Uh, this was around 17 or 0003 years old for a future opening in a group home, and they were like, well, that’s great. Um, the list is about 600+ long, and the only way you’re bumped to the top of that list is if something happens to one of you. So, like, basically, you have to have a terminal illness or die. And then he’ll be bumped to the top of that list, and then, he probably won’t stay in the community that he knows and loves. He could very easily be shipped 5 hours up to the UP where we have an opening.

And we were like, yeah, that’s, we’re not OK with that. So, right. So one of us dies and then he is shipped out of the only community that he’s ever known and loved to the strange wilderness, like, that’s not OK. And so we start talking about what would that look like if we purchased a home and created a group home and uh we were fortunate enough to be able to make that a reality in 2021, um. So I might have some of these. His age is wrong as I’m thinking about it, but yeah, in 2021, we, um, is that right?

Maybe 2022. I don’t know, 2022. And my husband, 2022, what are we in? 2025. And my husband spent the next year renovating this home and needed total renovation. Um, and Lucas and four other individuals who need total care moved in last February. So he, um, this home is about 10 minutes away from us, and he has been living there very successfully. I’m amazed at how independent he’s become, how happy he is. Um, it’s almost like he was this young man who was like, I am sick of my mother bathing me and changing me and feeding me like, I want some independence, and he is just thriving in this environment.

Um. It was much more difficult for me as I sort of processed this identity I’ve had for 123 years, surrender this identity I had for 19 years, um. And there was all this space that I didn’t even know what to do with. It was so uncomfortable. I mean, I slept with a baby monitor beside my head for 19 years, um, because he would have needs throughout the night and now all of a sudden it was like, I didn’t live in that survival mode anymore, and I’m only 13 months post, you know, placing him in this home, but Every day it still is like.

That surrender component into what’s next, because there is all this space and who am I if I’m not caring for somebody. I don’t even hardly know who I am anymore. I just, I, I mean, I call my sister like after her changes like, you know, you’re just 23, you know, 245 after your late husband passed and now, um, you know, 28 is like a huge, huge monumental monumental change. Um, I’m so curious about the group home. I mean, do you have a care manager or somebody that lives, lives there with them, or a couple of different people?

Like, what does that look like day to day? Yeah, our situation was pretty amazing. My sister-in-law was a nurse and she has seen a struggle with Lucas for years, and she started a home healthcare company to work specifically with our home. And so she manages that. She receives state funding for um all of the caregivers, um, and she usually we have about 27 caregivers for the 210 residents. Um, and so they have 2000 hour shifts that they, you know, come in and leave and so there’s always like fresh people.

Which, you know, when you’re a caregiver, you’re never fresh. You’re just exhausted, you’re just like, um, and just so to see Lucas, you know, thriving and even uh learning all these new skills, it’s like, well, of course, you know, he has fresh people every 73 hours, you know, I was exhausted. I mean, you can’t, you’re just like caring for their needs, you’re not necessarily continuing to teach and engage and you’re just in survival mode, so. Um, it was, it was such a good thing for our family. And now it’s, you know, I’m still always going to be like a caregiver on some level because I still have to order his incontinence supplies and, you know, order his meds and um, but it’s really nice now when I hang out with him, I’m pretty much just mom.

Um, and now when his siblings hang out with him too, they don’t have to help care for him. They just get to like hang out and be siblings and have fun together. Um, and so that’s just been huge for our family. I love it. If you have in a in a built in long-term care plan for him, you know, like, I mean that’s kind of what we’re dealing with with my family is like, you know, we’re all, we’re all aging and we’re like, OK, what is the long-term care plan for our brother?

Um, and to your point, the waitlists are long, the places are few, you know, I’m going to see a day program on Wednesday for him and like all of these things cause, um, he has not really been integrated in with people that are living with disabilities like himself. I, I, I’m hoping that he’s gonna thrive, you know, in these different settings, but he’s been super isolated, like most of his life. And yet, you know, there’s lots of conflicts that happen out in You know, neurotypical society that does not understand him where he gets, you know, kicked out of places and, um, and things like that happen.

So, yeah, we need to, we need to pivot for sure. And you know, in, in the group home, he’s got friends, right? He’s got other people he lives with, he’s got, you know, to your point, other people that are um providing value to his life. Um, and, you know, my mom was bedridden for the last two years of her life and and then my older sister’s primary care, but I kept thinking about that too, like, yeah, we need a break, but they need a break from us too.

Like my mom totally, you know, thrived when other people came in. She had different stories. They had different content, they were fresh and, and all of that. And so it is kind of this mindset shift of like, what if, what if we expand our care team, um, here, here a bit too. So I, I love this that um And where can people find out, like if somebody’s listening and they’re like, I want to look into this. I wanna, you know, I wanna, I wanna see if I can create my own group home.

Like, where would you direct them to go? Um, I do offer coaching at justronnie.com. I’ve had a lot of families reach out, um, and just be like, please help me. What do I do? Um, and it’s very important to be reaching out. It’s very affordable coaching. I also offer a boxer. Um, for those who want to just like pick my brain on Voxer, I don’t know if you’re familiar with, it’s kind of like a Marco Polo walkie talkie. Yeah, which is a great situation for caregivers, where like, in the moment you can send something and then in the moment you can check because you’re juggling quite a bit too.

So, yeah, so 27 minutes a month for $2500 and we can just kind of chat back and forth on what you’re hoping to create, um, and that’s, yeah, it’s a really flexible option for families who have children with disabilities because Um, yeah, our, I mean, our time is crazy. It’s, it never, things never go as planned. So, no, no. And yet, my dad used to always say busy people get more done because like you have to, like you’re like, you know, you kind of become this, um, but then to your point, like you’re in this phase of transitioning and figuring out like, you know, you used to do all of these things and now you have more breathing room.

Um, and so it is, it’s, it’s, it’s an adjustment. I know you write poetry, right? I’ve I’ve read some of your poetry on your, um, on the Instagram, I think. OK, yeah, that, I mean, that’s, that’s my medium. That’s my dream, yeah, I mean, I’ve been writing poetry since I was 224 years old. I still pull it out and honestly, if I could make a living as a poet, that’s what I would do, but I don’t think you can make much of a living as a poet, so I offer coaching.

Yeah, well, and you’ve got a lot of expertise to share, like in, in this group. So keep writing the poetry for but maybe someday you’ll, you know, it’ll, it’ll go viral and you’ll, and be able to make a, make a living. Oh, I’ve had one that went viral and um don’t make a living. I know it’s such a hard, it’s such a hard space. Um, you know, I know you had mentioned to me too, and you kind of alluded to it that you had all of this support during your late husband’s um brain cancer and like people dropping off meals and giving you extra hands with the um with some of your kids and so forth.

And then Um, and now Lucas is older, right? And, and, you know, and then puberty he had kind of outgrew his cute stage. Like, what, what, um, how, how was that like that juxtaposition of all of that? What did that look like? I love talking about this because, uh, the contrast is, is severe, um, in terms of how much help, I had so much help, I didn’t hardly know what to do with it when my late husband was going through brain cancer. Versus raising a profoundly disabled young man for 20 years, there has been nothing.

And I often think about that, and I think there are a few factors at play here. Um, we could hire help for Lucas when he was still young. And like I said, he’s incontinent. So, you know, a seven year old in diapers isn’t that big of a deal. A 17-year old in diapers, nobody is going to step into that situation. And then an aggressive 17-year-old who screams because he’s nonverbal, there is nothing there. So I think there is a fear factor of, I don’t know what to do with this individual.

So I’m just gonna pretend like this family doesn’t exist because I certainly don’t want them. To expect me to help with that child because I don’t want to do that and I’m not comfortable doing that. And I would just say to anybody listening, there’s no expectation that you help with that child, but if you could step into our life in some way and take some things off of our to do list, um, like picking up meds or transporting the typical kids, you know, that was always very challenging because we were always playing a divide and conquer game where one of us stayed home with Lucas because Lucas likes his normal routine.

And then one of us would go out to the other kid’s basketball games or bring them to the roller skating party or whatever that looks like. But, and we’re OK even staying home with our disabled child, but we don’t want our other children to miss out on things. So helping transport those kids or yard work or laundry or whatever, meals are incredible. Um, and then I think about us too as a society, we love short term, you know, it’s why we go on these short-term mission trips even, and then we You know, hang out in the orphanage, and we take all the selfies and we feel good about ourselves, but then we go back to our comfortable lives.

When you have a child with profound disabilities, there’s no end in sight. Like, with cancer, like there’s remission or death, but there’s an ending. And this just goes on forever. I mean, Lucas might be 80 years old one day, Lord willing. And we don’t know what to do with that as people. Like I have to keep helping this family, like that just feels overwhelming, I think to a lot of people. Um, but just to really encourage anybody who’s listening, like these families are often drowning, and if you can just step in and offer something, that means the world to a family like mine.

One, we, we feel like we’re being seen and um I think that’s, that’s a big thing with families like ours. We just feel like we’re unseen, which might be a segue into the film if you, if you want to go there. Yeah, I’d like, yeah, talk about the unseen documentary, how we’re, how we’re failing parent caregivers and why it matters. Tell us about that. Yeah, that came out of that really intense period when Lucas was going through puberty, um, and just really thinking. How can we make society aware of the struggles of like a family like ours.

We were living in rural Tennessee. We’re so isolated. There were no resources or support for families like ours, um, and our house literally started to feel like a tomb, like we could not get out into the world because it just wasn’t accessible or accommodating, um, and his behaviors were so challenging. And so I posted on Facebook one day, just, hey, I have this great idea. I’d love to create this film. If there’s any filmmaker out there who wants to meet with me, I’d love to set something up.

And the next day, this filmmaker and producer from Nashville left a comment on my post and just said, we would love to get together and talk about this idea. And, um, 4 years later, they followed our family around for 4 years through the pandemic, and we created Unseen how we’re failing parent caregivers and why it matters. Um, and it’s currently showing on ABC, um, and if you go to the website caregiverdoc. com, um, we often offer free showings, so you just sign up for our newsletter. I was like, how can I watch it?

Yeah, yeah, and um. And Then you’ll be notified of the next showing that that comes available. Yes, well, definitely, I love that it started as an idea that then evolved into something that is necessary for folks to see and, you know, I hope that you, you know, you, you threw out some ideas of how families could potentially show up for these other families that are feeling unseen. And I think that goes true for anybody, you know, is in any kind of a chronic long-term caregiving situation. And so maybe it’s like even putting a reminder in your phone as that friend or family, you know, once a quarter even, like, hey, check out with the Ronnie family and, and or check in with them to see if there’s something I can, I can do specifically, um, or even just like, hey, I’m headed to Costco or headed to wherever, you know, is there anything that you need.

Um, such, yeah, such practical, pragmatic things that really do add up and make a difference. Yeah, they do. They certainly do. Well, we’re gonna, we’re gonna, um, uh, I’ll, I’ll share the, the website for that and also I know there’s an Instagram um link for that. And then are you, aren’t you also working on another documentary? We are, cause now my passion is housing for disabled young adults. So, um, I’ve noticed that most of the things in my life, as long as the thread is Lucas. They, they turn out pretty successfully because um it’s whatever like he needs and we need that I go after with all my heart.

So yes, now we’re creating a documentary called Uncertain Doc. com, um, and it will explore the housing crisis for families like mine and disabled young adults and We even kind of go behind the scenes for how we created Hope Farm, which is the group home where Lucas lives, and explore some other options that people are doing around the United States. So good. Well, I know in our area in Atlanta, we have a place in Swannee, Georgia called Annandale that has this long wait list, um, a family created it.

Uh, they have independent, semi-independent, um, assisted and skilled nursing, like you can kind of age in place there, which I love. But again, long waiting list, expensive, um, and, you know, and then there was another kind of, my brother is in some ways high functioning, so he drives. And so that almost became like a barrier for, for even going there. It’s like, oh, well, we don’t have anyone here that drives. And I’m thinking like, OK, so he can’t drive because nobody else hears drives, like, so, you know, everybody is a little bit unique and different that way um.

And I have kind of um connected with a place in Georgia called Together Weare. org, a nonprofit that you’re aware of that they’ve been amazing. So they, um, because, you know, we, my brother’s a snowbird, so he lives half the year in Michigan, half the year in Georgia, one with one sister in um in Michigan, and then he lives with my bachelor brother nearby in Georgia and then I become his primary caregiver when he’s down here in Georgia. So like we have figured out how to share the care, um.

But this together we care, like the ultimate plan is to get him down here in Georgia because we have more resources for him and we have more family members, like, and my sister may not live in Michigan and she might want to move closer to her kids. So we need a long term plan, essentially, but they have helped us with, you know, trying to, you know, understand how we could get paid, you know, paid family more money to help pay for his resources. Um, they have helped us like connect to a site.

Psychiatrist so we could do testing because it has changed and, you know, he’s 5003 years old. The testing he has as a little kid in rural Pennsylvania is not the same as what’s available now. And we just learned he had autism actually, like it didn’t really come as a surprise to us, but Um, that combined with his intellectual disability, so they’ve helped with that. They’re helping kind of explore different housing options. So anyway, for Georgia, Together Weare. org is a is a is a great resource. Um, and I’ve got nationwide.

I think I think it’s nationwide. I on that, but I do believe it’s it’s a nationwide. I’m gonna double check on that. They have been so great, like just for somebody to help you navigate. It’s like when you’re like, where do I go next? What do I do? Um, and maybe you do something similar, Jess, like do you help people with all of these different things, or do you have kind of like niches that you focus on? Uh, I do, um, in terms of housing, I’m primarily versed in Michigan, um, with what works, but I, I’ve talked to people all over the country because I think what works in Michigan can work in another state as long as you’re familiar with the right organizations and agencies that you need to connect with and the process that you have to go through, um.

And I know other people in just about every state in America have created something similar to what we’ve created. So, it’s possible. Um, I know agencies don’t always like to go that route because it’s way cheaper to keep the individual with their family than it is to dole out the money to create a group home. Um, so that’s always kind of there. Their end goal is to keep the individual with their family as long as possible, but that might not necessarily serve the family, you know, my brother has his moments for sure where he’s, you know, can be, it would be really rough on my marriage to have my brother live with me.

So I’m grateful it was rough on my marriage and he’s my son. So it’s very draining, living in survival mode for so many years. Yeah, and it has a ripple effect on everybody else in your family as you, as you had mentioned. Um, well, you, you You know, you also have a your business, your overarching business, and maybe that’s where all of these things are kind of coming up. It’s called the Lucas Project, right? Is that where, that’s, um, that’s the nonprofit, um, OK, yeah, yeah, um, my business is just Ronnie, that’s the coaching, the books, the speaking, um, the Lucas Project is a nonprofit.

And I started that in rural Tennessee that provides recognition, resources and respite to special needs families. Amazing. So we have a bunch of different programs and initiatives all listed on our website at the Lucasproject.org. We’re currently in the process of launching a respite opportunity here in West Michigan that we hope becomes a model. Uh, for other communities. We offer grants for communities who want to launch their own respite initiative. Um, we have a resource database on our website, a support group on Facebook with over 2000 caregivers, um, totally free, and you need to join it.

Yeah, you should, um, yeah. And then we send care packages to caregivers, so you can go to our website and nominate a caregiver, and we send a package of goodies. Yes, I’m gonna link to all of that on the on the show notes show notes. And are you still podcasting as well? I am at Coffee with Caregivers, not a lot, just one a month. That’s about all I can handle right now. I do one every other week and I’m like, how do people do more than this?

Yes, um, especially if you’re speaking and you’re doing all of these other things like it’s, it’s a um Like an octopus with a a variety of different legs. Um, but, um, I will link to that too, so people can, can check it out. And then you’ve written several books, um, Is there one that we should highlight today? Probably caregiving with grit and Grace. That’s related to caregiving. That one came out in December. Um, it’s 100 days of hope and encouragement for caregivers. It is faith-based, so it’s just short devotionals.

They take about 5 minutes a day. Each one is packed with scripture and just a story from my life. You can literally kind of read it front to back and kind of get the gist of my caregiving journey, um. It’s for caregivers in any capacity, not just uh parents of special needs children or um spouses who are ill, but really any caregiver, I think could get a lot of hope and encouragement from this book. Yes, well, we’ll link to that and then I know when we publish this, we’re going to have a limited time giveaway for somebody.

So um check out Instagram, Happy Healy caregiver for details when um Um, just, justice is published. So amazing. Thank you, thank you for that. And I think we all need a little more hope and encouragement for sure. So, um, I love that. Let’s, let’s talk about, you know, your self-care. Like I, I’m talking to you and know you know, now that I’ve learned more about you and, and all of the things that you’re juggling, how are you able to kind of sustain this? Like what is, what is working for you so that you can sustain and juggle all these different balls?

That’s a loaded question. What worked for me for seven years was literally living in survival mode, um, and I’ve, I’ve processed that like, um. You know, we, we either fight, flight, or flee, and I fight. That is my go to response. I am just going to continue head down, going, going, going, going, going, and that worked until Lucas moved into his group home last year and I hit total burnout. I literally went to bed and watched stupid shows on Netflix for like 3 months. I, I, my body was just done.

I was so tired. You let yourself. Yeah, I did. I let myself, I cleared my schedule completely. My assistant thought I was losing my mind because I was like, I don’t care. Like I didn’t care if it all burned to the ground. I was so tired. Um, and in that year really process like I’ve been going so hard for so long to create all these resources for not only my family, but for other families, what does need to be released. Um, And processed and prayed with my husband for the past year and I actually just resigned as executive director of the Lucas Project last month.

Um, I’m just, it is, it is. I’m still on in a part-time capacity, but I handed that baton over to an amazingly competent individual who is going to have a fresh vision and a fresh perspective to take it to a new level, um. And I’m leaning more into my, my books and my speaking and my coaching and consulting, um. And learning how to rest and giving myself permission to even. Do things that are enjoyable, like, I’ve always wanted to take a pottery class, like, why don’t I do this?

And then there are a million reasons in my head, well, cause you have this and this and this and this that you have to do, and it’s like, No, I can do something enjoyable for myself, and that is so hard for me. Um, but I’ve come a long ways, um, even every night, you know, I’ll sit in the bath and read a book for 45 minutes or so, you know, I never had the space or the time to do that. There still is a lot of guilt attached to anything pleasurable that I allow myself to do, but Um, working through that trauma and learning how to rest and learning how to surrender, um, to this next phase of life and what kind of what kind of ripple effect is that having on the people around you now that you are being mindful of doing that?

Well, I see all of Lucas’s siblings who I think they just fell in line for years too. They gave us so much grace because they understood that Lucas took so much of our time. And now they’re like, oh, Mom and dad have time, and they have like, we’re like, oh, we don’t have that much time unless you want to take a pottery class with me. We can go do pottery. So we’re kind of like, whoa, OK, there’s there’s some time and we can definitely be more engaged, but mom and dad are also, you know, wanting to heal a little bit from all of these years of trauma.

Um, so, uh. And I’ve had to learn too, just because I have this space doesn’t mean I necessarily have to fill every single moment with things that I couldn’t enjoy so much before, like, you know, nights out with girlfriends, um, that just couldn’t occur because I wasn’t going to leave my husband with 8 kids, plus Lucas. Lucas was like a job on his own, really. So one of us would usually take care of Lucas’s needs and one of us would take care of the other 7 children’s needs. Um. So, I don’t know.

I feel like it’s going to be fun to maybe talk about this in a couple of years when I’m more removed from the trauma and can really speak into how I had or maybe I won’t be speaking at all in a few years, maybe I’ll just be in a villa in Italy like resting. Yeah, which is fine, which is OK too. What are some of your favorite topics to speak about, by the way? Um, I, I love to talk to caregivers about taking care of themselves. Um, and now trauma care has become a really interesting topic to me, um, just exploring all of the modalities and tools, um, that have been so instrumental for myself.

Um, somatics has been huge in allowing my body to heal, um. Steps, like getting my 10,000 steps a day movement has been huge and kind of shaking out a lot of that trauma. Um, and then a lot of faith-based topics as well. Um, I, I’m a big believer in leaning on my faith and allowing The Lord to really sustain me and strengthen me and um I love speaking about his goodness and how he’s he’s led me to so many of these amazing opportunities in my life. Yeah, and especially when you were feeling early on, like why me, why, you know, and how that has evolved um in your relationship.

Yeah, for sure. And I mean, it’s it’s pretty incredible because it was like a woe is me. I don’t want to do this. I mean, I laugh because if anybody were to become a caregiver, it would not be me, like. I’m not the sympathetic individual. I’m I’m a gitterdner. Like I’m a problem solver, but when my kids are sick, they do not run to me. They run to my husband. Like he’s the sympathetic, loving, patient, and I’m like, here’s your bucket. Don’t throw up on the couch.

It’s funny you say that because it’s like, yeah, it’s not everyone’s into caregiving has that whole nurturing type of, I would say I’m a tough love caregiver for sure. Like I’m going to I’m going to push back and And make you do things for yourself, um, which I don’t think is a bad thing, but I also think I’m a better, I’m a better cheerleader for caregivers than I am a hands-on caregiver. Yeah, I am too, for sure. Yeah, yeah, I would say for sure, yeah, I, I look at caregivers and I’m actually more Concerned about their well-being than the ones that they’re caring for.

Yes, which is why we’re, we’re in. Yes, yes. Well, let’s talk about self-care for a second. So this is my book Just For You Daily self-care journal. I picked out some prompts to share with you just to see what you think here, um. Let’s see. What’s your current go to healthy breakfast if you eat breakfast? I don’t, I don’t eat till noon. I do. What’s your noon thing then? Um, I usually do cashew yogurt with homemade granola. Oh, intermittent fasting has been very beneficial for my body, so I just eat 12 and 7 every day.

OK, love that and homemade granola sounds yummy, um. What’s the last good movie you saw? Doesn’t necessarily have to be that you went to see it. I watch the same movies over and over and over again, and they’re movies from my college days. So, um, Benjamin Button makes me cry every single time. Um so if you need a good cry, yeah, um, Armageddon. I also nap every single Sunday and I put in either Notting Hill because it’ll put me right to sleep. Not that it’s not a good movie.

I’ve just seen it 500 times. Yeah, you know, it’s like I know what happens. I’ll catch it next time or the holiday is another one that can put me right to sleep. Yeah, good. I like that. Um, what helps you deal with the challenges that life brings your way, like if you’re having a bad day. Um, I’m a foodie, so I often will. Like Yesterday, well, it wasn’t a bad day, but I’ve, I’ve been exploring this concept of fasting. So I’ve tried a couple of 24 hour fasts, um, just to, um, see how my body reacts and the kind of clarity that I get and stuff.

And so yesterday was one of those, and I knew that when my fast was done, I really wanted a good meal. So I made this huge homemade pasta dinner with this cream sauce and homemade bread and this banana cake with this cream cheese frosting and Cooking is really soothing for me. So if I can get in the kitchen and cook something really nice and soothing where I know like the end of my day is going to end on a very positive note, then that makes me very happy.

And then he brings people together, you have to share stories. Um, I love that. Do you have like a, you know, in case people ask that intermittent fasting, like is there a resource that you would share there about how you How, how you’re getting started with that, how you’re learning about that. Yeah, I have some books, um, but I can’t see the titles of them, but there are so many, so many books on Amazon about it, um. And it’s like a brand new thing for me, but I’ve noticed it has really helped with the inflammation in my body.

Um, and I think when you live in that caregiver role for so long, that we, we definitely accumulate a lot of that inflammation. Yeah. Yeah, lots of lots of things that we can. Um, work on, but I, you know, what, what I’m hearing you say to Jess is like you’re curious and, and exploring it, and that is also what has helped me on my caregiving and self-care journey is just like trying on different things and seeing how they make me feel, keep what’s working, ditch what’s not. Exactly.

Yeah, and so and so sharing that with caregivers, it’s like we’re all different. What’s gonna work for you is going to be different than something that works for me. Any, any, um. Anything else that you wish that we hit on that you wanna leave us with? Um, and then also how do people stay in touch with, with you? Um, I think you alluded to it at one point about staying present, and I think that is the biggest thing that I just, that’s the biggest message I want to convey to caregivers.

You know, I think so often we get stuck in the, the past and the guilt of maybe what we should have done, or we obsessed about the future and all of these what if questions, you know, what if my loved one dies, or what if we never get a home for our brother, or what if my loved one never goes into remission that We fail to stay present and I would just encourage every, every caregiver to understand that joy is only found in the present. It’s in each present moment that we are blessed to share with our loved ones, and we waste so much time and energy sort of obsessing about the past and the future.

And if we can train ourselves just to stay present, and it is a training, it’s not natural at all, um, and remind ourselves to stay present. I think we’ll experience a lot more joy in our lives. Yeah, how did, how did you, I mean, is it like when you catch yourself thinking about the future and you’re like snap out of it. Yeah, it’s like a muscle we have to train, like, uh uh, that’s, and for me it’s wasting energy. I, I hate waste. I hate wasting like food or time or energy.

So that’s what does it for me. It’s like you’re wasting your energy when you could just stay present and remember that’s where the joy is found. Nice, nice. I love that. And then how do, how do people find you? Where should they go? I am at Jess Ronnie. com, um, and then anything about the Lucas Project is at the Lucasproject. org, um, and then the documentary Caregiverdoc.com. OK, we’re gonna link to all of that. And do you have a favorite social platform you like to hang out on?

You know, I’m kind of anti-social media right now, um, but I am, I’m on Facebook at Jess Ronnie official and then Instagram, Jess plus the us. OK, we’ll, we’ll link to those two. Amazing. Thank you so much, Jess for being vulnerable, for sharing, for providing your light after, you know, some, some heavy traumatic things that have gone on in your life and I think a lot of hope and healing and I appreciate the conversation today. Yeah, thank you.

Thanks for listening to the Happy Healthy caregiver podcast on the whole Care Network. I hope this episode provided encouragement and practical tips to infuse into your life. You’ll find the show notes and all the resources mentioned at Hahealthy caregiver.com. I also invite you to check out previous episodes of the podcast that you may have missed. If you enjoyed the show, be sure to. Subscribe so you never miss an episode. Ratings and reviews also help others discover the podcast, and sharing with a fellow caregiver is a great way to spread support. Stay connected with me between the episodes by following Happy Healthy caregiver on your favorite social media platforms and subscribe to the weekly newsletter where every week I share something happy, healthy, and care related. Just visit happyhealthycagiver. com to join. Until our next episode, I’m Elizabeth Miller with a reminder to take care of you.

Are you still here? Well, it’s time for the disclaimer. I am not a medical, legal or financial professional and I am not providing medical, financial or legal advice. If you have questions related to these topics, please seek a qualified. Profession. I have taken care to spotlight family caregivers and experts, but their opinions are theirs alone. This podcast is copyrighted and no part can be reproduced without the written permission of Happy Healthy caregiver LLC.

Thanks again for listening to the Happy Healthy caregiver podcast on the whole Care Network.