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The cost & courage of caring - stories that spark resilience.
Welcome everybody to episode five of the Caregivers Podcast. We are so thrilled to be here today and wanna take the time to thank you for your comments so far and your engagement. It really means a lot to us. Today, I'm really pleased to welcome an important guest to the show who has defined themselves as a faith inspired survivor of a long trajectory as a caregiver. Jess Ronnie is foremostly a mom and a caregiver for eight children.
Dr. Mark Ropeleski:One of her children, Lucas, has grown up with very special needs and commitment that's required of a lifelong caregiver. She and her husband, Ryan, are very much involved in their family, but also in advocacy for caregivers. And that's been shown in her lifelong commitment to the Lucas Project, a nonprofit started in honor of Lucas, for which she's the CEO. She's also gone on to author several books. Her most recent book, Caregiving with Grit and Grace, is an amazing read, and it certainly provides readers with a lot of strength and opportunity to reflect on their positioning.
Dr. Mark Ropeleski:Without much further ado, I'm Mark Ropelsky, the host of the Caregivers Podcast. You can call me Doctor. Mark if you prefer. Let's join Jessica and hear what she has to say. Welcome to the show.
Dr. Mark Ropeleski:We look forward to exploring lots of things with you. And I thought we could maybe start, you know, being well aware of your remarkable story of love, loss, and overcoming staggering challenges as a caregiver. Can you share with us a little bit, like the path of what you've been through up until now?
Jess Ronne:Yeah. First of all, thank you so much for having me. And I'll try to give the cliff notes version of my story. I am the oldest of 12 children, and that's meaningful because as I've looked back now over this past year and a half, I've realized I've kind of been in this caregiving role for the majority of my life. I was married young, around 24 years old.
Jess Ronne:We had our first, child, a son named Caleb, in 02/2002. And in 02/2004, I was pregnant again with our second child. And I went to what I thought was just a routine ultrasound appointment at around twenty weeks for this child. And I was told that the baby had experienced a stroke in utero, and there was very little hope. He hung on.
Jess Ronne:I hung on. And Lucas was born on 08/12/2004. And after undergoing brain surgery and spending two weeks in the NICU, we were sent home with our son with sort of this umbrella diagnosis of special needs. And so we went home. Life was very challenging.
Jess Ronne:Lucas had numerous diagnoses, including level three autism, but we didn't know that at the time. So he never slept. He was delayed in every aspect of life. He had a two year old size head at birth, so he didn't have the strength in his neck to even hold his head up. And so that meant I never slept because if he happened to flip over in the middle of the night, he would have suffocated himself.
Jess Ronne:But somehow we got through it and found expecting again. And I gave birth to a daughter in February 2007. And that's when my husband, Jason, started having all of these health problems. He continued or he continued to go to specialists and they would say, you you just have type one diabetes. You have to get your sugar under control, which was just such an out of the blue diagnosis.
Jess Ronne:He was a tennis professional, a personal trainer, and a gym owner, and just out of the blue has like all of these issues with his body. And then one night I ran across town to my dad's house, left Jason at home with the three kids. He had been feeling pretty good that day. And I pulled into my dad's driveway, and I received a phone call. And it was Jason.
Jess Ronne:He said, Jess, call 911. The phone went dead. So I rushed back home to discover ambulances in my driveway, cop cars. Jason had passed out and was on his way to the local ER where they discovered a baseball sized tumor in his head. He underwent treatments for the next three years.
Jess Ronne:We became unexpectedly pregnant again during that period. And I gave birth to Joshua, our fourth child in September 2009, and that's when Jason was diagnosed with a glioblastoma. He went on to fight for an additional year. He passed out in August 2010, one month before Joshua turned one years old. And those three years were the most intense years of my life between Jason undergoing treatments for brain cancer and raising four children, six and under, one being Lucas who had profound disabilities.
Dr. Mark Ropeleski:Then things changed. Yeah. People went through a huge huge upheaval, doubt, recognizing and I I remember in your book sort of that moment of realization where it was just you and the steps you needed to take to move forward if only in your caregiver role, let alone in looking after yourself. But I know you're thinking back to when you and Jason had made a commitment to following through and carrying Lucas to delivery, and you really had a lot of faith in that it was God's plan. Your faith inspired you to keep going, and twenty one years later, Lucas is continuing to thrive.
Jess Ronne:Mhmm.
Dr. Mark Ropeleski:But at that moment in time after Jason's passing, he must have called on your faith tremendously. Can you share us with us how that informed your caregiving and and and how it allowed you to keep going?
Jess Ronne:Yeah. It actually informed my caregiving in very different ways between the experience with Lucas and then my experience with Jason. I would say that I lean very heavily on my faith with Lucas and surrendered into God's will for my life and my unborn child's life. I mean, there's nothing that will bring you to your needs as a mother, like hearing that your child is going to die, and entering into the throne room of the almighty and begging for life for your child. I don't know of any mother who who wouldn't do something similar.
Jess Ronne:And I think in that surrender, I really had a peace during that experience. And with Jason, I struggled with a lot of anger. I, you know, within three or four years, I sat aside between my husband and my child, two people who I loved going through brain surgery five times. I mean, that's a lot of, like, brain surgeries between the two of them. And, I never lost my faith, but I definitely wrestled with God.
Jess Ronne:And I often look back and I view it a little bit like Jesus in the Garden Of Gethsemane before he was crucified saying, you know, father, take this cup from me. I can't do this. This is too hard. And ultimately coming to a point of surrender and saying, but not my will, but yours be done. And that is the point I came to eventually about two weeks before Jason passed away.
Jess Ronne:It was a moment where I dropped to my knees and I said, I don't know why you've called me to walk such a difficult path, but I will obey and I will surrender. And it was a very tangible moment where I felt a release. And in that release even, I was able to escort Jason into heaven. I was able to stop what I was doing, stop striving, stop trying to control everything, control, like, everything that I could possibly control because I couldn't control the fact that my husband was dying and there was nothing I could do about it. And in that surrender, I was able to let everything go and, just really be present for him as he left this earth.
Dr. Mark Ropeleski:You referred to your journey as being holy work and the choice to make it holy work, and I think that really would resonate with any listener because it's it's so profound in two words, holy work. Obviously that's been an important guide as you moved on after Jason's passing to the next chapters. But if you look at your journey as a caregiver, can you even speak to one stage that was hardest or is it hard to really separate, I mean it's just, it's such a fabric of experiences that you've been through that have defined your story. Can you share with us like some of the different stages and how they relate to each other? Or are they really difficult to sort of parse out?
Dr. Mark Ropeleski:Is it just part of a continuous journey?
Jess Ronne:No, I think there are definitely seasons that were harder. And I even talk about that in the book. The book is broken up by seasons.
Dr. Mark Ropeleski:I love how you did that, by the way. Think it's Yeah.
Jess Ronne:And it's winter, you know, you're you're slapped with the cold hard truth of the diagnosis and you're kind of reeling and you don't know what's going on. And then you move into spring where you kind of get your footing a little bit, you know? And for me, that was Lucas starting to sleep and he's in the therapies and he's going to school and Jason is in remission and he's doing well. And like, can can do this. We can we can do this life that we have.
Jess Ronne:And then summer, you know, for me, that was Lucas beginning to go through puberty and becoming very aggressive, incontinent still, nonverbal, lots of screaming, lots of aggression, lots of aggression towards himself, towards me, towards his siblings. You know, summer with Jason was the tumor returning, being diagnosed with a glioblastoma, the worst kind of brain cancer. And then fall is kind of this resignation of what is and what is not. And for Jason, you know, that was the finality of his death and healing in heaven. Not exactly what I wanted.
Jess Ronne:And for Lucas, it was, you know, this is a child who has profound disabilities. And how am I going to find the joy? And how am I going to find the meaning and the purpose in raising an individual like this? And with both of those situations, I can distinctly remember very, very, very hard times. At one point when Jason was in hospice, I semi jokingly said to a friend, like, there are two members in this family right now who are not incontinent.
Jess Ronne:Like my son Caleb, who was five years old and myself, like, it was just constant, like, crap everywhere. And I thought this is just like a metaphor for my life right now. It's just overwhelmingly difficult. And then when Lucas was going through puberty, and you had referenced that phrase holy work that actually came out of that period of life when he was so challenging. He was homesick.
Jess Ronne:He was screaming. He I was changing numerous diapers every day. I had a book contract I was working on. I had this documentary, Unseen, that we were working on. I had just launched this nonprofit, like all this grand, exciting, you know, work that I thought the Lord had called me to.
Jess Ronne:And it felt like every minute of that day was spent caring for Lucas, and I was just becoming more and more agitated, because I couldn't get the important work done. And I felt the Lord say to me, this is holy work. Caring for your son is the holiest work. You can accomplish this side of eternity. And in fact, it's this work that makes you more Christ like, not all this grand, you know, all these grand contracts and films and books that you think are so important.
Jess Ronne:And from that moment on, it just really shifted my perspective so much so that I had a sign created that said, this is holy work and hung in above Lucas' bed just as a constant reminder that that was the important work in life.
Dr. Mark Ropeleski:He's been Lucas has been such a central figure in your journey and I was going to ask you if you could share a moment when he taught you something that you never expected to learn in your life, but maybe you just answered the question about that. I mean, don't think I don't think we can, through whichever intervention it may be, learn so much from experiences what those two words really embody. But at the same time, and I think you described it well and our listeners would probably appreciate the continuum of all of this, and that in this whole process you've become a forever parent and we hear about being a forever parent a lot these days. And sometimes it even sort of segues into becoming a sandwich generation forever parent as demographics change. What are some of the biggest fears that still exist for caregivers today that go sort of hand in hand with forever parent caregiving?
Dr. Mark Ropeleski:What do they need to face and what do we have to have available to be able to speak to people about and reinforce and strengthen them on their journeys?
Jess Ronne:Yeah. I think the biggest fear really is what happens to my child when I die. And I would even take it a step further and say, you know, we need to have these solutions in place long before you die because your child can't be uprooted from the only life they've ever known because mom or dad has suddenly passed away. And it's that future future residential question, future option question that haunts parent caregivers of disabled children. What happens when they can no longer go to school?
Jess Ronne:They can't work. Not all of them. I mean, some some can work. Children like my Lucas will never work. When I say, you know, profound disabilities, he will need twenty four seven care for the rest of his life.
Jess Ronne:He needs assistance in every aspect of his life, feeding, bathing, getting clothes on, maneuvering from one place to another. He will always require twenty four seven care. And as a parent a couple of years ago, that question haunted me. What happens? Like, do we do this forever as he gets stronger, as he becomes more aggressive, as I get older, as it becomes more challenging to care for him.
Jess Ronne:Like, what does our future look like? What does his future look like? And that's where we really need to have those support systems in place for these families. I mean, the just the autism rates alone, I don't what is it right now? One in thirty three or one in thirty?
Jess Ronne:I mean, we are going to have a tsunami of individuals who require future long term care, and we are not prepared for that at all. And as these parent caregivers either pass away or become too old to be able to care for their children, We are not equipped as a society to manage this at this point. And it's going to require some massive systemic changes. And the number one change is providing a living wage for the direct care staff that care for our loved ones. I think if we can get to the point where that's a respectful profession and we are paying these individuals what they're worth, then we solve the respite problem.
Jess Ronne:You know, families are able to hire capable, well trained respite providers. I think we solve that long term problem where we can have more group homes with capable, caring staff in place. But that's that's the number one concern is what what is going to happen with all of these individuals in the next fifteen, twenty years?
Dr. Mark Ropeleski:We hear so much about, you know, the aging baby boomers and that whole cohort, but actually the dials are sort of in competition almost, there's a wave coming also from that younger generation that's going to need more dedicated care in different forms, as you attest to with Lucas, so it's not going to be that straightforward. And, you know, if you look at the newswires between The UK, Canada, The US, there's lots of movement afoot and people are really thinking about this seriously and clamoring to some extent for some provisions, and we certainly acknowledge the numbers which are in the millions of individuals who are informal caregivers, I mean, I think the estimates in The States are roughly 61,000,000. You think about the indirect costs, not only cost savings, if you will, because people are essentially doing this work without any sort of compensation, the direct costs in terms of lost wages from absenteeism, extra costs of caregiving, and just the mere fact that you actually don't have money to put aside for your own future when your caregiving role may be done, depending on, you know, what paradigm you're in, it's quite staggering. I was, you know, I checked in on the newswires periodically, it was nice to see in Kent County, Michigan, they've set up what they call the Caregiver Resource Center, and it's actually providing resources in the community for informal home care givers in terms of just where they can turn to, what kind of resources they can seek out, and just it's like a little microcosm but of what's needed on a grand scale.
Dr. Mark Ropeleski:And it's always refreshing to see those stories pop up. But to your point, and I think I can only imagine that it fuels your momentum with your advocacy work and your philanthropic work, that there needs to be a grander scale. And I've seen the trailer of Unseen and it certainly shook me and, you know, if you have access to the full movie, certainly we'll be happy to have the link for the trailer on this episode site because it's just so powerful. So, you know, we talk a lot about our caregiving roles, we're drawn to it for whatever reason, whatever profession it may be, and you know, part of our project here is the inclusivity of caregiving. That it often doesn't depend solely on title, but actually on the act of caring and the act of giving on oneself, and sometimes relentlessly, sometimes by demand relentlessly.
Dr. Mark Ropeleski:There's always the notion of self care and self compassion, and, you know, reflecting on what our inner critic might say as we battle through all of this. And can you share with us a little bit about what you've turned to and how you've coped? Because I, like many caregivers, we all have our dark periods on our journey, and I think we need to live expecting them to come as opposed to being shocked that we we were chosen to experience one darker period. Mhmm. What have been your coping mechanisms in all this?
Jess Ronne:I mean, for years, I I've always been a walker. Like, I I still walk. I try to hit about 12,000 steps a day. But like what you and I were even discussing, I think prior to hopping on air, like there is a devotional where I I say I was doing like every I was doing about 80% of things right. You know, eating healthy, taking twenty plus supplements a day, doing yoga, doing acupuncture, walking, and I was still in just constant pain.
Jess Ronne:And I think that's a really hard thing to tackle as a caregiver because I had somebody recently ask me even, is there any way that I can either mitigate or escape that pain when I'm in the midst of caregiving? And I don't know because I wasn't able to. However, I've also been able to look back and process and say, never stopped either. And what I've learned is when you're in survival mode, you either, you know, fight, flee, or freeze. And I fight.
Jess Ronne:And I fought for nineteen years nonstop because there had to be some purpose or meaning in being Luke's mom. And so I never came up for air. And I just fought and I fought and I fought and I fought. And I look back and I think, had I maybe leaned into some more rest when, let's say, hypothetically, he was attending school and still does. And instead of resting, I was continuing to go and create and do and do and do.
Jess Ronne:And, yeah, they turned out to be pretty incredible things, but it also led to complete and total burnout after we created Luke's group home. And so now he's been living in his group home for about a year and a half. That was another thing I had to create. It was always like, so this is our problem. What do we need for a solution?
Jess Ronne:And put my head down and got it done. And when I hit the wall about a year and a half ago, I just laid in bed for three months. My body was cooked. I was in so much pain. I could hardly move.
Jess Ronne:I could hardly turn from one side to the other to even get out of bed and have been slowly kind of reemerging ever since then. But I don't know if that answered your question.
Dr. Mark Ropeleski:It's I know it's often as caregivers, there's this theme that emerges where we feel invisible or caregivers feel invisible. But it's pretty hard to imagine that in that state you were invisible. You must have been very visible to those who care about you and to your extended network. Who was there for you in all of this? And did you feel a sense of community among other caregivers?
Dr. Mark Ropeleski:And I think community is such an important part of the caregiving experience even from the shared goal point of view, the shared commitment point of view that strength and community provides. How was that experience for you? You allude to in your book some of the paradoxes of sort of the invisible caregiver or, you know, seeing when it's convenient to be seen but otherwise sort of in the way. How did you how did you capture that feeling of community support when you were in those darkest times?
Jess Ronne:I I didn't when it came to Lucas. There was such a vast difference between my experience with Jason and my experience with Lucas. As Jason went through cancer for three years, I had so many people rally. I didn't make a meal for a year. I went to my mailbox every day, and there was money.
Jess Ronne:There were checks. People cleaned my house. People watched my children. People did my laundry. They, you know, cleaned up my yard.
Jess Ronne:They mowed my yard. Every single thing that I could have possibly needed while Jason went through his cancer journey for three years was taken care of. And I contrast that to being a mother to a profoundly disabled child now for twenty one years. It has been crickets. There has been nothing in terms of community around that situation.
Jess Ronne:And in thinking through that, I think a lot of it has to do with fear. I don't really think people know what to expect with a child like Lucas. And in that lack of knowledge, it sort of keeps them at bay. And I also don't think people know what to do with a situation that never ends. So like with Jason, he had cancer.
Jess Ronne:He went through treatments. It was three years. It ended. He died. Lucas, there's no end.
Jess Ronne:And I think people kinda look at that and they think, do we are we supposed to help this family forever? And that's daunting. And it's why even, you know, experiences like short term mission trips are so popular because we don't actually wanna live there and help forever. We just kinda wanna show up, feel good about ourselves, take the pictures, and then go back to our comfortable lives. And we can do that, you know, with a family that's walking through a cancer journey.
Jess Ronne:It's much more challenging to do that with a family that has a profoundly disabled child. And so, yeah, I think that's why we even named the documentary Unseen because families like mine raising children like this, we don't feel seen. The world is not made for our families. It's not accessible. Most churches don't have programs.
Jess Ronne:And eventually, as our children age, we just hole up at home and we become very isolated. The house starts to feel like a tomb, and it's just easier to stay home because we can manage the behaviors. We can manage the aggression, and that pulls us further and further away from community. And I have to say even since Lucas moved into his group home, it's been challenging, or I've had to challenge myself to step back into community because you get comfortable in your lack of community. And I've almost had to retrain myself how to be in community and how to seek it out and to remind myself that depression breeds an isolation.
Jess Ronne:We need community, and we need real in person community and to make that step to go and find that in my life.
Dr. Mark Ropeleski:A lot of the a lot of the work you've done through the Lucas project provides families those first glimpses of respite and a sense of community caring. And interesting thing that you bring up when you refer back to the process of mourning, mourning has stages and there's a lot written about the stages of mourning and people experience that pretty tangibly. But your point is right on them. When you're caregiving in a situation, for example, you refer to Lucas, it is forever, it's never ending, it's omnipresent.
Jess Ronne:And
Dr. Mark Ropeleski:that must call on incredible resources as a person, as a caregiver, as a parent, to just keep at it with diminishing returns, not from the experience of giving of yourself and your mission and your holy work, but also just the diminishing returns of engagement. At times I almost wonder whether or not communities and societies just don't understand how to help when it comes to this type of care, you know, interacting with a caregiving family. And I was wondering if you could comment on that. Like what are the what are the easiest things that friends, community members can do? I mean, it's almost prescribed.
Dr. Mark Ropeleski:We kind of intuitively know what to do, as you referred to, after Jason's passing. But when we want to make a difference in a caregiving family's life, what can we do that's tangible, that's meaningful, and that maybe has returns that people don't even understand, but have are so such strong returns to individuals?
Jess Ronne:Yeah. Thank you for asking that question. And first of all, I would say you don't have to care for the child. You know, I don't even think that's an expectation from families like ours. We understand that that can be daunting if you're not familiar with the diagnosis or the behaviors.
Jess Ronne:And I think often it prohibits people from even offering help because there's this unspoken expectation. Is the family gonna expect me to care for that child? No, there's zero expectation. And all of the things I listed that people assisted with when Jason had cancer are so meaningful and helpful to families like ours. And I think what you need to understand is our to do lists are so long because we have a child with disabilities, you know, between medications and therapy appointments and ABA appointments.
Jess Ronne:And there's just a whole other layer of parenting that goes on top of situation like that. So if you can bring a meal or you can do yard work or you can clean a house or if you can take the typical siblings, that was always a huge help for us. You know, we couldn't necessarily bring Luke to all the events that the typical siblings wanted to participate in because Luke likes his normal. And if Luke's not in his normal routine, he's screaming and he's lashing out and he's trying to hurt people. But if people would offer, hey, I'll pick up your kids and I'll bring them to this roller skating party, and then I'll bring them back home.
Jess Ronne:Like, that was huge. Or I'll pick up your kids and bring them to youth group, and I'll bring them back home so that, you know, I can stay home with Lucas. My typical kids are still getting the experiences that they desire. But you know, really anything, I think it's just looking at the gifts that you had. We once had a woman offer to give our whole family haircuts in the comfort of our home because she gave haircuts.
Jess Ronne:That was her profession. And she came into our house and she cut all of our hair and I didn't have to take all of my kids and Lucas out to get their haircuts. So it's just those little things that just make life so much easier, and more manageable for a family like ours.
Dr. Mark Ropeleski:That's profound and accessible as well because maybe we need to rethink the complexity with which we frame the need for help and it may actually be much more granular and simple than we think. So that's that's that's really profound and actually really informative. Jessica, it's been amazing spending time with you today so far. You've made an amazing transition from being Lucas' caregiver and focusing so much of your devotion to him whilst at the time perhaps even sacrificing your own needs understandably, which most of us would do. But there comes a point where the imbalance can sometimes become striking, and you alluded to hitting that wall in the last couple of years.
Dr. Mark Ropeleski:Hope Farm, which is the project that you launched to create a place for Lucas to live, but also to live in community with his friends, which I know was an important message that he had for you that he had written down that he wanted to live with his friends. Tell us a little bit about the journey of that sort of transition towards letting go a little bit while at the same time building Hope Farm and where you needed to sort of at one point take a break because your your body and your your mindset was just too overcome with all the needs of everything else, but perhaps not your own needs.
Jess Ronne:Yeah. I'll address Hope Farm first and then, go into the burnout. So when Lucas was a little boy, I honestly thought I would always take care of him and he would always live with me. And as I alluded to earlier, as he began to age and not only harm himself, but harm his siblings to see, you know, his siblings sort of avoid him so they wouldn't get hurt, I would say around 14, 15, 16 years old is when I started to think through our options for long term care and what would that look like if we eventually were to find somewhere for Lucas to live outside of our home. And that was a, honestly, probably about a four year process before we actually even moved him into his own home, just researching and touring different group homes and getting familiar with what they entailed and deciding that we really wanted to create our own solution for him because we wanted him to be close to home.
Jess Ronne:And we purchased a home about ten minutes away from us. And then we renovated it for about a year and a half. It needed total renovation, and it needed to be accessible and just all the things that go into that. And we needed to learn what we were doing, how we were gonna fund it. It was just a massive endeavor.
Jess Ronne:And I think in that year and a half period, honestly, well, I don't think. That's when I was writing the devotional book. And looking back and understanding, it was almost God downloading his love letter to me, a grieving mother who was preparing to release her son into the care of others and just really speaking to me as I was writing that book. And that book in turn, you know, became a love letter that I was able to give to caregivers. But in that year and a half, really grieving, really processing this action that I was going to be bringing my son to this home and leaving him there with strangers.
Jess Ronne:And eventually, the day arriving and going down to his bedroom because I always had the morning shift. My husband always had the night shift. That was kind of our divide and conquer, and I was always up early. I mean, Lucas, we slept with a baby monitor beside our head for nineteen years because he would wake up at 5AM screaming. And I went down there and just the tears already starting to flow because I knew, you know, this was the day he was going to get off the bus from school at his new house.
Jess Ronne:And we had brought him there a couple of times and tried to get him familiar with it. And every time we brought him, he would say, bye, see you later. See you later. Like he didn't wanna be there. And so now he's going there to live for good and getting him dressed and singing to him and crying and putting him on the bus and then meeting him there after school and getting him off the bus and doing his whole nighttime routine.
Jess Ronne:And he refused to go to bed that night because that wasn't his his bed. And he started shouting out, go to the car, go to the car. That meant, you know, I wanna go back home. And we had never even heard that phrase before, go to the car. So he was digging deep to get us to understand, I don't wanna stay here.
Jess Ronne:I wanna go home. And we finally his meds kicked in, and we kind of forced him into his bed, and the direct care staff stayed there. We ended up going home at, like, 10:00. My husband and I just prayed all night, and we cried all night. And it was just horrible thinking, you know, we had deserted our son.
Jess Ronne:And the next day, we went back there to visit him the next morning, and he was happy as could be. And then in fact, he looked at us, and he said, bye. See you later. Like, he wanted us to go. He was now ready to be in his new home.
Jess Ronne:But then that process of there was so much space in my life that it felt so disorienting. I didn't know what to do with all of this space. And like you'd mentioned, he went to live at Hope Farm. And, like, two days later, I just hit the wall. My body had been screaming at me for months.
Jess Ronne:And I felt like I did when I had COVID, honestly. The the bad time I had COVID where I almost ended up in ER because I couldn't keep anything down and I was so exhausted. And I just I just hit the wall for about three months. Could hardly move, laid in bed, watched Netflix, did the bare minimum to kinda keep my family afloat, ordered a lot of pizzas for dinner. And my body had just kept the score for nineteen years and looking back and realizing, you know, you had mentioned I was good at self care.
Jess Ronne:I did a lot of things right. I drank water. I walked. I worked out. Took my supplements.
Jess Ronne:I did all the self care things, but self care isn't necessarily rest. I never rested. Even my self care was on my to do list. Walk thirty minutes. Do yoga thirty minutes.
Jess Ronne:Lift weights thirty minutes. Like, everything was regimented. And I think that's that's what led me to this point of absolute depletion was I just never rested. Every minute of every day was filled with something for myself, for my son, for caregivers, for my family. And I never just stopped and allowed myself to be present.
Jess Ronne:And I think that's been the lesson for as I move forward in life. Like, self care isn't necessarily rest. You need to take time to rest, to just be present, to enjoy life. And so I've been very intentional about that for this past year and a half, even going so far as to I take a nap most days, not today, I'm talking to you. But I really enjoy
Dr. Mark Ropeleski:Thank you.
Jess Ronne:Yes. Resting for like thirty or forty minutes. And sometimes it's, you know, just laying in on the couch with my eyes closed or doing a yoga nidra session, but just stopping everything. And I don't really think I stopped for about nineteen years. And it may go even further back, honestly, with my life, even just being the oldest of 12.
Jess Ronne:I've always been praised for being such a good little helper even as like a two, three year old little girl. And as long as I was being a good little helper, I was fulfilling my role in life. And I think that's just that just went on for way too long and led to eventual burnout.
Dr. Mark Ropeleski:It becomes part of our identity of being a giver. Mhmm. And I think more and more is written about that and, it takes on different syntax, some call it a form of trauma, but I don't think it has to be. But it is that pattern that emerges that we carry with us. And it's the residue of experiences, I think, which inform how we approach life later on in different stages.
Dr. Mark Ropeleski:And you hit the nail on the head. You know, you alluded to in some of your writings about how, you know, the message of resting is there in the Old Testament and the New Testament, and the importance of it, yet we don't listen to that calling, and you know, think we're seeing more and more about, you know, being present actually involves listening to what signals your body is telling you, and actually choosing rest is actually being present with yourself as much as it is following the self care schedule. So you put that very elegantly. What are your strategies that have had the biggest payoff nevertheless? So you mentioned walking.
Dr. Mark Ropeleski:What are some of the other ones? What do you do during walking? Do you rest during walking? And maybe in the past you planned everything you had to do during your walks, but has walking taken on a new a new sort of frame of mind when you managed to go on your walks?
Jess Ronne:You haven't read my most recent Facebook post, have you? I actually did a post a couple of days ago about
Dr. Mark Ropeleski:Oh, no. I didn't see it.
Jess Ronne:What I do on my walks. So, yeah, I do I try to do yoga every day, twenty, thirty minutes. I don't do weights anymore. I I don't I'm just not in a place. It feels too traumatic.
Jess Ronne:I just don't want anything painful or anything that I need to strain or strive or and maybe that'll shift at some point. My late husband would be so disappointed seeing he was a personal trainer, but I've kinda dropped that. I do somatics every morning. I go through some somatic stretches, and I I lay on my yoga mat and, like, welcome the father, son, and holy spirit into my life and have a prayer and just try to be really present in that manner. And then, yeah, walking about 12,000 steps.
Jess Ronne:I read in Steve Jobs' biography a few years ago that he often worked while he walked. And I thought, well, that's brilliant. And so now whenever somebody suggests a Zoom meeting, I'll suggest, why don't we have a phone call? And I will walk while I'm doing the phone call. Sometimes I'll take interviews.
Jess Ronne:I'm learning Italian. That's a a new thing. That's a new passion of mine. So I do my Italian lessons. Listen to a podcast.
Jess Ronne:I do some writing, you know, on my phone. I get a lot done when I walk. But then my husband and I go on a walk after dinner every night, and that's just simply a stroll to catch up on the day and, you know, process what we have going on the next day. And that's much more of a, like, present, be present, see the beautiful leaves type of a experience. But most of my walking is is definitely multitasking.
Dr. Mark Ropeleski:Was it has all of this been sort of new learning since you hit the wall, or was it sort of there all along, it just you had no time for it? Because it sounds like you are truly more present in the moment with yourself during your self care now more than ever.
Jess Ronne:The somatics, the rest, the yoga nidra, those are all recent tools that I've incorporated in the past year, and the common thread there is that rest. So the walking's not new. I've always always walked even as I wrote a a poem that did very well about when Jason was in hospice, and he he lay dying, and I strapped on my winter boots, and I went out for my walk in a snowstorm in Michigan because I had to shake the stress out of my body. It's always been a very effective way for me to sorta get that angst out of me. But the rest the rest always felt wasteful, not productive.
Jess Ronne:You know, I grew up under this other cute little mantra of work then play. And you work, you get all your work done before you play. And now at 48 years old, I'm kinda like, well, that's stupid. I mean, I can work, I can be productive, and I can enjoy some play. I mean, this week, we have this one time here on earth in this grand and glorious life that we're given.
Jess Ronne:So why don't we enjoy it a little bit more?
Dr. Mark Ropeleski:Yeah. I think there's I think there's been a big mindset shift in terms of, you know, I was of the generation that you you learn multitasking, and I I think back to how I learned that in the research lab in Chicago, which you you walked in at 06:30 in the morning and you multitasked until you stepped foot on the shuttle to go back to your apartment kind of thing. And you sort of take those habits with you into life, then I think people are calling out that skill set of not as not being as effective as once dreamed up.
Jess Ronne:Mhmm.
Dr. Mark Ropeleski:And you hit the nail right on the head there, can't agree with you more. So, witnessing this and living this firsthand, I think you're a very important voice for caregivers everywhere and your experiences and what you've learned and what you might otherwise call out and challenge as we examine where we position ourselves as caregivers today in our society. There are important changes that need to occur, and it's not just resting, there needs to be some more foundational changes to accommodate caregivers at different levels. Not only professionally of course, but caregivers in a non professional sense, family caregivers. I think it has to do about the space that caregiving needs to receive in a society that's going through What so many is your call out?
Dr. Mark Ropeleski:What is, what are the most important points you think we need to advocate for caregivers everywhere today? We're starting to see the signs of it, tax credits, some sort of remuneration for an element of the time spent at home that caregivers spend looking after their loved ones. We're seeing movements afoot, there's grumbling, there's the National Caregiving Strategy that's been recently announced in Canada. There are lots of things going on. But from your backyard with your lens and with your experiences with Hope Farm over the horizon ten minutes away and you embarking on this next phase of your caregiving journey, what do people need to hear and what do we need to collectively express to get the message heard?
Dr. Mark Ropeleski:Because I think you hit the nail on the head earlier on as well. People don't know. People don't get it. Maybe people are blind or just don't have the space to try and truly understand what it's all about to be a caregiver. For a young individual with advanced needs or even for a senior partner with terminal disease or multiple chronic age related comorbidities.
Dr. Mark Ropeleski:Share with us your knowledge. Think we're really, you're someone who deserves our open ears.
Jess Ronne:Yeah. I think my perspective might be a little different than than the normal perspective. I do think we need we need, you know, the tax cuts. We need we need all the help we can get from the government agencies for sure. But I would say too, we need to begin to see each other.
Jess Ronne:I think, statistically, they say, like, 53% of Americans don't even know who their neighbors are. And we've gotten so far away from, like, living in community and living in, like, tribal models where we help each other. We assist one another. You know, when the mom comes home with a newborn baby or Sally's, you know, dad had a heart attack. You know, we show up because we care about these people, and we just don't even know each other anymore.
Jess Ronne:We're so self absorbed narcissistic to some extent, and I'm I'm putting myself in the same category. I think just culturally, we don't care, and we don't see people who are going through hard times. And if we could get back to truly setting aside our agendas and stepping into people's messy spaces, we wouldn't need the government so much. If we could collectively, in groups of three, four, five assist as we go through these challenging times, that would change the world. It really would.
Jess Ronne:I think you'd see rates of depression decrease. I think you'd see anxiety decrease as we were just really intentional about getting back to that communal model where we help one another out.
Dr. Mark Ropeleski:You know, that doesn't sound like a complicated call to action. It actually has so much inherent beauty to it, and it's got so much strength at so many different levels. And we've all experienced it during holiday time, or I always remember, you know, in my life when somebody spontaneously dropped in and you had enough food at dinner to offer them some, and you all sat together unexpectedly on a weekday and just enjoyed the thrill of laughter and that sense of togetherness and perhaps even being sought out by the person who decided I'm going to drop in on you and see how you're doing and get the update from you, and usually that conversation would allow some discourse and it might even end with, oh, if you need help with that, just give me a call, or what have you. And that sort of microcosmic impression on a grander scale between families, large numbers of people in a community is being lost. There's no, there's no question, and it's something we definitely need to steer back towards.
Dr. Mark Ropeleski:If your books were maybe to be read by a caregiver fifty years from now, what single lesson would you think might still ring and hold true?
Jess Ronne:I would hope it would be that this is holy work. I think that was a game changer in my perspective towards caregiving once I truly grasped that this was the holiest work I could do, this side of eternity was caring for my son, everything changed. And not that it became easier, but it had meaning and purpose beyond myself.
Dr. Mark Ropeleski:Well, would really like to thank you for spending time with us. I've come to appreciate how busy your schedule is and everything you've got on the go. We wish you the best and thank you so much for your time and love to have you back and hear an update on how Lucas is doing and any new developments in your journey because I think your voice will be eternal.
Jess Ronne:Oh, well, thank you. Yeah. This has been great, and I would love to come back. So just invite me back, and I'll be back.
Dr. Mark Ropeleski:That wraps up another episode today. Thanks so much for watching. We appreciate the growth so far in viewers and subscribers. It's been amazing. Please take the time to subscribe on YouTube.
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Dr. Mark Ropeleski:We appreciate the comments so far, and it's been a pleasure to engage. See you soon. Take care until we meet again. Before we wrap up, I wanted to remind you of something important. The conversations you hear on this podcast are here to inform, to support, to spark reflection.
Dr. Mark Ropeleski:We're not a substitute for professional medical advice, care, therapy, or crisis services. Listening to this podcast does not create a doctor patient or caregiver client relationship between us. If you're facing a medical concern, health challenge, a mental health challenge, or a caregiving situation that needs guidance, I encourage you to reach out to a qualified professional who knows your story. If you're ever in crisis, please don't wait. Call your local emergency number or recognized crisis hotline right away.
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Dr. Mark Ropeleski:Thank you for being here, for listening, and most of all for taking the time to care for yourself while you continue to care for others. I look forward to hearing from you.