Podcast Episode

The Story of a Caretaker

About this Episode

Episode Summary

Jesus tells us that we will have struggles in our lives. What do we do while we’re facing those struggles? Jess Ronne is an example of someone who faces trouble with grit and determination. She did not give up in the face of many challenges and because of it she now has a non-profit that helps caregivers like her. During this conversation on God Hears Her, join Jess as she shares her story with hosts Elisa Morgan and Eryn Eddy Adkins.

Episode Transcript

God Hears Her Podcast

Episode 140 – The Story of a Caretaker with Jess Ronne

Elisa Morgan & Eryn Eddy Adkins with Jess Ronne

[Music]

Jess: So, we had to pivot a little bit, but in that process, we came up with our mission statement, which was to provide recognition, resources, and respite for special needs families.

[Music]

Voice: You’re listening to God Hears Her, a podcast for women where we explore the stunning truth that God hears you, He sees you, and He loves you because you are His. Find out how these realities free you today on God Hears Her.

Elisa: Welcome to God Hears Her. I’m Elisa Morgan.

Eryn: And I’m Eryn Eddy Adkins. How do you handle struggles in your life? Unfortunately, we can’t avoid bad news or have great days every day. Jesus even told us that in our lives we would have troubles.

Elisa: Today’s guest has faced a world of struggles, and it was all at the same time. Jess Ronne is a strong woman who’s handled life’s toughest situations with grit and determination. Join us today as we ask about Jess’ story during this conversation on God Hears Her.

Jess: My story really began in 2004, when I went to what I thought was a routine ultrasound appointment for my second child, and was told at that appointment that the baby had experienced a stroke in utero…

Eryn: [gasping]

Jess: … and there was no hope.

Elisa: Oh, my gosh. How far along were you?

Jess: Twenty weeks.

Elisa: Twenty weeks.

Eryn: Wow.

Jess: It was suggested that we terminate that pregnancy, and in the doctor’s words you’re young and healthy, you won’t have any problems getting pregnant. My husband and I did not feel peace about termination and just decided to put the baby in the Lord’s hands and trust that His will would be done. I carried that baby almost to term… four of the loneliest months as a mother, like, expecting every day for this baby to die, because that’s…

Eryn: I can’t even imagine.

Jess: … what all the specialists said, but yet feeling the kicks, feeling the life, and just holding my breath constantly, when is this going to be over, Lord? And it wasn’t ever over… They finally scheduled a C-section on August 12, 2004, and cut me from one side of my belly to the… to the other because his head was the size of a two-year-old’s at birth it was so full of fluid…

Elisa: Fluid. How far along were you? How many weeks then?

Jess: Thirty-eight. He just would not let go…

Elisa: Wow.

Jess: … and this is kind of the… the story of his life…

Elisa: And his name is?

Jess: … he will not let go. Lucas.

Elisa: Lucas.

Jess: And he came out screaming with life…

Eryn: Oh!

Jess: … and that was the day, really, my advocacy work began, although I didn’t really know it at the time, and the day I became a forever-parent-caregiver.

Eryn: Wow.

Elisa: That’s beautiful.

Jess: So…

Elisa: And that’s hard.

Jess: … Yes, it was very hard, although people said did you grieve when, you know, he was… he had special needs, he was profoundly disabled, and I don’t really think I was grieving when he was born. I was thrilled my baby was alive…

Eryn: Yeah, yeah.

Jess: … I had been told he’s going to die, he’s going to die, he’s going to die…

Eryn: Yeah.

Jess: … and then two weeks after being in NICU, they hand me this baby and they’re like, good luck!

Elisa: [gasping]

Jess: And we go home with our baby with, like, no prediction of death anymore.

Elisa: Wow… And no instructions for life, either.

Jess: Not really. They didn’t really know. He wasn’t supposed to live…

Eryn: Right.

Jess: … and we went home to difficulties. I mean, he was delayed in every aspect. He never slept. I mean, he didn’t sleep till he was probably five years old…

Elisa: Gosh.

Jess: … and just had a little bassinet right next to my bed because he had to be put to sleep on his back, and I basically had to watch him all night, because if he could somehow turn himself onto his stomach he could have potentially suffocated himself in the middle of the night, so, I was just a mess for those first couple of years.

Elisa: So, you have one older child…

Jess: Caleb…

Elisa: … and then you have Lucas…

Jess: Caleb was two and Lucas, and then the story progressed. A couple years later we had our daughter, Mabel. When she was about six months old, my husband, Jason, started having all of these really odd symptoms. He was a personal trainer, he owned a gym, tennis professional, and he was losing weight like crazy, very disoriented, just brain fog, like, could not get it together, and he kept going to specialists and they said well, you have type one diabetes, you just have to get your blood sugar levels under control. And it was like, this is a man who eats grilled chicken and broccoli, like, morning, noon, and night, who’s the epitome of health and fitness, and they just kept saying it’s type one diabetes, it’s type one diabetes, and one night I said to him, cause he would have good days and bad days, and at this time we had, Caleb was four, Luke was maybe two, and Mabel was six or seven months. I said do you feel okay, I have to run across town to my dad’s house. Yeah, I feel fine. And I pull into my dad’s driveway and the phone rings and it’s Jason, Jess, call 911 and the phone went dead.

Elisa: Oh no.

Eryn: Oh.

Jess: So, I run home, frantic, not only about him but about the three children I left in his care. Well, he had had a seizure, but before he seized and passed out, he had enough sense to put a movie in for Caleb, put Lucas in his excersaucer, and put baby Mabel in her bouncy seat…

Elisa: Oh, my goodness. What a man.

Jess: … and seized until he passed out. So, I arrive home to ambulances and cop cars and I’m running in like what’s going on and they don’t know, and he’s laid out on a stretcher, and we end up at the local hospital. And I just remember sitting on the floor, and it’s funny what your brain will do in those moments…

Eryn: Yeah.

Jess: … I was obsessed about baby Mabel. I had to nurse her. Like, I was still primarily nursing her for her nutrition, and that’s what my brain focused on. I have to… who’s going to bring me Mabel? Like, I’ve got to feed her, she’s not going to eat, and then the young physician assistant comes walking up to me and he said we’re going to run an MRI just to rule out the possibility of a brain tumor, and I was like that’s what it is. Like, it all made sense. And sure enough, he had a baseball-size brain tumor. So, that became a long night. It ended up being a stage two… so we were given the option just to watch and wait, not pursue chemo and radiation, they said sometimes these tumors don’t come back for twenty, thirty years. And we were like you know, God’s put us through the ringer with Luke, and now you, and… we’re just going to believe in faith. We’re… we’ve…

Eryn: Wow.

Jess: … got this, and we went home.

Elisa: And then what happened?

Jess: Well, he remained tumor free for about a year and a half. We unexpectedly got pregnant again in the middle of that, and it was, let me think, June of 2009 I believe. I’m getting ready to go to my twenty-week ultrasound appointment for our fourth child, which is a major source of anxiety for me…

Eryn: I would imagine.

Elisa: Imagine, yeah.

Jess: … and that’s clear… Luke is screaming bloody murder day in and day out, we’re bringing him to the doctor, we cannot figure out what’s going on. He’s, like, thrashing his body, thrashing his head. Finally we have a diagnosis for him. He had chiari malformation and a tethered spinal cord, which basically means…

Eryn: What does that mean?

Jess: … like, your spinal cord is growing into your brain…

Elisa: Oh.

Jess: … cavity…

Elisa: Painful!

Jess: … painful. So, he has…

Eryn: That’s why he’s thrashing…

Jess: … yes…

Eryn: … throwing his body…

Jess: … yes, to try to relieve that pressure. He has a successful brain surgery, and then Jason’s quarterly MRI appointment is coming up. And he checks himself out at his lunch break to go down to get his MRI, and he’s feeling good, so we’re feeling confident that it’s going to be clean, and he calls me up very annoyed, Jess, the tumors back, I have to check myself into ER immediately. So, I have a child recovering from brain surgery, a… six-year-old, I don’t even know, Mabel was two, maybe?

Eryn: Yeah.

Jess: … and I’m pregnant…

Elisa: Yeah.

Jess: … twenty weeks pregnant.

Elisa: Oh, gosh.

Eryn: What did, in that moment, what was the feeling? Were you shocked, were you numb?

Jess: My go-to emotion tends to be anger…

Eryn: Okay.

Jess: … God and I do a lot of wrestling, and…

Elisa: You sound like you know yourself well. Did it take a while to discover that, or was it an immediate understanding?

Jess: Yes. No. It… looking back in hindsight, and I would say when I was pregnant with Luke, the Lord and I wrestled a lot even during that, and I really came to that peace that passes understanding, where…

Elisa: After the twenty-week diagnosis…

Jess: … yes, where I surrendered. With Jason’s brain cancer journey, it was very different. I often compare it to, like, with Luke I walked beside… or I stayed beside the Shepherd. With Jason it was more like forget this…

Eryn: Yeah.

Jess: … I am sick and tired of You running my life, cause You’re not doing a very good job of it, and me running off and trying to control everything in my anger, and understanding anger is adrenaline…

Eryn: Yeah.

Jess: … and understanding that about myself with being pregnant, and three young children, and a… husband who has a brain tumor, and having to find some source of strength to deal with all of this. And now, looking back, now in hindsight, too, recognizing that there are better fuel sources to tap into…

Elisa: Than anger.

Jess: … than anger, but that’s what kept me going. Just a lot of anger.

Eryn: I feel like there are so many women right now listening, they probably just feel, maybe, a sense of release from shame in their anger. Because I love… I… I think that when, for me, when I’ve experienced anger towards God, I shame myself for it, and then it prohibits me to not heal and move forward. It just… I stuff it, and then it comes out again. I stuff it, and it comes out again. Would you share a little bit about how you learned more about how to process your anger and the adrenaline spike?

Jess: I don’t know that I learned it in those moments…

Eryn: Yeah, okay.

Jess: … I think it’s been looking back…

Eryn: Okay.

Jess: … at how I handled those moments and recognizing, like, that is your go-to emotion, and what can we maybe do better? Couple of years ago Lucas ended up in ICU for six weeks with a shunt malfunction. At that point, I knew, okay, let’s not turn to anger, your kids are an hour away at home, by themselves. Ryan and I, my husband, part of the evolving story, were like ships passing in the night. I would stay with Lucas all day in the hospital, and then Ryan would come home from work ,and he would stay with Lucas all night in the hospital. Nobody was really taking care of the kids back at home, other than, like here’s your McDonalds…

Eryn: Yeah.

Elisa: Right.

Jess: … type of thing, but recognizing that I had evolved so much a couple of years ago because I wasn’t getting angry, and instead, I was going home to the kids and saying let’s have a dance party. Let’s shake off the stress…

Elisa: Interesting.

Jess: … because we’re all going through a really difficult time right now, and we bought a disco ball, and we would turn off the lights and we would blare the music and our disco ball would be circ…circulating, and we would, like, shake off the stress like a wild animal…

Eryn: I love that. Yeah.

Jess: … that had been chased, just, like, getting that out of our systems. And then even at the hospital, I brought my yoga mat. I was like we need to find better ways than just being angry and living in this fight or flight mode of operation…

Eryn: Right.

Jess: … but during it, I don’t know that I…

Elisa: Well, yeah.

Jess: … even had the capacity to see it.

Eryn: Right. Right.

Elisa: And I can hear an appreciation for the gift of anger, in a way, that maybe not as healthily as you wish now, looking back, but it led you through a process. So, if I’m following this correctly, so, your first husband is diagnosed with a recurrence…

Jess: Yes. Yes.

Elisa: … of his brain tumor, and you’re still angry. But your anger seemed to somehow be your go to through that season. Can you take that season and scoop it forward into…

Jess: Yes.

Elisa: … Ryan, and some of the other things?

Eryn: Yeah.

Jess: Jason fought for three years… he passed away on August 24, 2010. At this point, I was a young widow with four children under seven, including a one-year-old, a profoundly disabled child, and two other children.

Elisa: Fast forward…

Jess: At Jason’s funeral, his mom pulls me aside and says I am praying for your next husband. You cannot do this life by yourself, and I am praying for a godly man to come alongside you. And I just looked at her and said Mom, I am… No. And she’s like no, you can’t do this alone. Three months later, I brought the kids out for trick or treating… my first big hurrah as a single mom and came home, and I had kept a blog during Jason’s whole cancer journey, just to update the masses on care pages, and a stranger from Pennsylvania left a little comment on my blog saying I don’t know why I’m telling you this, but there’s a young widower in Oklahoma, he lost his wife to brain cancer four days after Jason died…

Elisa: Oh, my word.

Jess: … he has three young children, and he’s not doing very well. And I just thought you could be a source of encouragement to him. So, I found his blog, left a little comment, y’all know where this is going [laughter]… Just said I’m praying for you, if you ever want to talk, I’m here, because his journey was very fast and short. She passed away, from diagnosis to passing away was four months…

Eryn: Wow.

Jess: … whereas I had three years to kind of work through all these stages of grief and finally end up at a point of acceptance, and actually, like, almost wishing for Jason’s eternal healing in heaven, because it got so bad for him and for us. So, I just reached out, and then we hopped on the phone and we never got off. We were engaged a couple of months later…

Eryn: What?

Jess: Yes…

Eryn: Okay, wait, hold on…

Jess: … very fast… [laughter]

Elisa: Tragedy can do that, though, you know?

Eryn: Yeah. Oh, okay, I have so many questions… Okay, so you talked on the phone. You lived in…

Jess: Oklahoma.

Eryn: Oklahoma. So, how did you guys… And then you said you got engaged a couple months, like, how did you date? I… Did he… How was your date?

Jess: We…

Eryn: Did he come to you, did you go to him? Like, tell me more.

Elisa: Had you met before you got married? [Laughter] Yes.

Jess: Yes…

Eryn: Okay.

Elisa: Just checking here.

Eryn: Did you meet at the altar?

Jess: We… Nope, it wasn’t that kind of a thing… we met for the first time in Savannah, Georgia…

Eryn: Oh.

Jess: … in December, just a neutral place that we had both always wanted to visit, and we almost got married there, but we were like our families would kill us… and then we just flew back and forth a couple of times…

Eryn: Okay.

Jess: … but I think what people don’t understand, too, is we talked all day, every day. Like, the kids were in school, and we were just pouring out our… hearts to each other, and we had both kept blogs, so it wasn’t so much, like, we were strangers, he was reading all of my blog entries from years, and I was reading all of his from the most difficult time in his life…

Eryn: Yeah.

Jess: … and so, we got to know each other very quickly. And it just felt very God-ordained. And when you know, you know…

Eryn: That’s so beautiful. That’s so true.

Jess: … like, I say, too, with Jason, we were engaged, like, six months after meeting, so I’m just very decisive.

Eryn: Yeah.

Jess: Or I’m very good at twisting men’s arms [laughter]… getting them to walk me down the aisle or whatever…

Eryn: I don’t think that’s it… I think it’s divine… divine intervention…

Jess: Yes. And when you know, you know. And we were like we have seven kids, and you live in Oklahoma, and I live in Michigan and what are we waiting for?

Eryn: Yeah.

Elisa: Exactly.

Jess: Like, God was the foundation…

Elisa: But you have eight kids now…

Jess: We do.

Eryn: Yes.

Jess: We had a baby together in 2015…

Elisa: Oh, my goodness. That’s great. Congratulations.

Jess: Yeah.

Elisa: So, you have this amazing history. Tell us about how your son Lucas has become a vehicle through which you help him and others cope with long-term disabilities, and the care needed.

Jess: That’s been a process, too… I call myself a reluctant caregiver…

Elisa: Aren’t all caregivers reluctant?

Jess: … because… Yeah, yeah, I think some are more equipped than others…

Elisa: Okay.

Jess: … I’m not the mom that is going to sit beside you if you’re sick and, like, hold your hand all day…

Elisa: I see.

Jess: … I’m like here’s your movie, here’s your bucket, let me know if you need anything.

Eryn: “Here’s your bucket!”

Elisa: You’re not a nurse. Yeah. Yeah. Yeah.

Jess: Love you dearly… I would make a horrible nurse. Like, I… I’m not that person…

Eryn: Yeah.

Jess: … so in these caregiving roles that the Lord has bequeathed upon me I find it very interesting, you know, caring for, I… I’m also the oldest of twelve children, so, it’s kind of…

Eryn: Twelve.

Elisa: You’ve done this before.

Jess: … always been embedded…

Eryn: Yeah.

Jess: … in me, whether I wanted it to be or not, and then having a profoundly disabled child, and then caring for a dying husband for three years, and now caring for eight children, like, there’s all these layers, and I’ve said to the Lord, I don’t get it. Like, I’ve kind of become this voice of caregivers, and I just… I don’t get it. And it’s been, like, maybe I’m not that… the most empathetic person, but I’m a doer. And when I see a problem, I’m like, okay, how are we going to fix this…

Eryn: Yeah.

Jess: … How are we going to see caregivers? How are we going to get them the resources, and support, and respite that we all desperately need? And how are we going to create more residential options for our disabled loved ones, because we can’t live forever. We’re not going to live forever, so then what?

Eryn: Yeah.

Jess: You know, the special needs population just keeps growing and growing, and I’ve come to own and recognize, like, that is your role. You… you see the problem, and then you move forward, and you try to fix it somehow.

Elisa: What do you think are the most common struggles in caregiving, especially ones that you’re trying to address?

Jess: For families with special needs children, I think it’s respite. Just getting that break, a consistent break where you’re like, okay, I can take a breather. I hear that repeatedly from families with young children, and I would say probably from caregivers in general. Like, I just want a break, and I need somebody I can trust to come in and sit with my loved one. And it’s an honor to do this work, but we all need breaks, and we all need that self-care. And then for those of us with older children, it’s that residential component. Like, I’m not going to live forever, and do I even want to do this forever? Like, my son can’t do anything outside of the intervention of other human beings, and that’s maneuvering, feeding, eating, using the toilet, all-encompassing care, and at forty-six I’m like, do I want to do this forever? Is it fair to my other children? Is it fair to my marriage? Is it fair to my future grandchildren, because a yes to Luke forever is a no to other aspects of my life…

Eryn: Yeah.

Jess: … and…

Eryn: That’s a really great way to say it.

Jess: … we’ve decided to create a solution for our son, and in creating that solution trying to inspire other families to also not necessarily wait for the government to step in and help you, but getting communities together to create your own solutions, because it’s not as difficult as it might seem.

Elisa: Don’t people view that as selfish? Don’t people say well, you should be the one; and don’t we view ourselves as selfish when we say we have a different need? You know, how… how can we be more at home with our own limitations…

Jess: Yeah.

Elisa: … and even that question of do I want to do this forever, you know, some people are going to go, well, of course you are. What do you mean?

Jess: He’s your kid.

Eryn: Right.

Elisa: He’s your kid. You’re… you’re his mom, you know, God wouldn’t have put you in such a situation if He didn’t want you to do it.

Jess: Well, I mean martyr-mommy syndrome is alive and well…

Elisa: Yes.

Jess: … And I will say, I will be a caregiver to Lucas in some capacity till the day I die…

Eryn: Yeah.

Jess: … I don’t want to be his primary caregiver anymore, I just want to be his mom.

Eryn: Oh…

Jess: And that’s where I am as Lucas is about to turn nineteen years old. I don’t even know that he wants me to be his primary caregiver anymore.

Eryn: Yeah.

Jess: I think he would enjoy having just mom and dad, and somebody else, perhaps, taking care of his primary needs. And that’s a huge step to allow yourself to get to that point as a mother…

Eryn: Yeah.

Jess: … cause it’s really hard. Cause nobody can do it like me.

Elisa: So, then my mind goes to, well, how in the world do you find somebody, and how do you afford that?

Jess: We are partnering with a home healthcare agency, so it’s all state-funded care, and my sister-in-law is actually starting a home healthcare agency to work in correlation with the house that we’re starting. So, she will hire the individuals, the state will pay her the funding required to maintain the help. I’m still a little bit of a control freak, my office will be on the property [laughter], so I’ll still be there, like…

Elisa: Next to Luke’s place.

Eryn: Yeah.

Jess: … next to Luke’s bedroom.

Elisa: Yeah.

Jess: When you purchase the home, and then you have… you’re collecting their social security, so he’ll live with three other individuals, all disabled…

Eryn: Okay.

Jess: … so we’ll be the landlords, we’ll collect social security from each of the four individuals living there to pay their rent, but then the care is all provided through the home healthcare agency.

Elisa: So, tell us more about the Lucas Project. Like, how did it come to be, and what are you hoping it accomplishes?

Jess: Well, when Ryan and I lived in rural Tennessee with our eight kids, Lucas started going through puberty, and that’s when the aggression and the behaviors really started to amplify. And Ryan ended up in ER twice with panic attacks that resembled heart attacks…

Elisa: Oh gosh.

Jess: … led to a PET scan, where I was, like, are you kidding me, Lord?

Elisa: Oh, no.

Jess: You brought me out here in the middle of nowhere, now, with eight kids and I’m going to go through this again with my new husband? Those were clear, thank goodness, but it made me remember my promise to Lucas as a baby that I would one day start a non-profit in his honor, always feeling like the non-profit would help the children. And as we struggled so desperately without any resources or support, I thought, well, the child is only as healthy as the caregiver, and if we don’t start to address these needs of these caregivers, there’s no hope for these kids…

Eryn: Yeah.

Jess: …. So, googled how to start a non-profit, and filled out all the paperwork, sent it in, and we contacted a local school, said, can we use your facility once a month for five hours? We want to offer this completely free of charge to the disabled child and the siblings so the parents can take a break. Sure. Had no idea what we were doing. Like, just… [laughter]

Eryn: That’s amazing.

Jess: … jumped in, the story of my life…

Elisa: Aren’t you glad… aren’t you glad, yeah.

Jess: … Didn’t even have liability insurance, I look back and I’m like, what was I thinking? Jumped in, was super successful, parents loved it, and then the pandemic hit. So, we had to pivot a little bit, but in that process, we came up with our mission statement, which was to provide recognition, resources, and respite for special needs families… the recognition portion turned into a documentary on seeing how we’re failing parent caregivers and why it matters, which was picked up nationally. And so, that has been in… a great tool for churches and organizations where we can go in and say these families are right in your backyard…

Elisa: Okay.

Jess: … there’s a mission field right in your backyard. You just need to reach out and start to offer them some sort of support or respite…

Eryn: Yeah.

Jess: … But anyway, during the pandemic we had to pivot, so we started doing these care packages, which was basically respite in a box that we’re sending out to caregivers nationwide. And this year we’re projected to gift over fifteen hundred caregivers with a care package…

Eryn: Wow.

Jess: … so that sort of became our thing, which was kind of strange, like, they just loved it. You can go on our website and nominate a caregiver to receive a care package…

Elisa: Oh, and what’s in it?

Jess: Just, like, luxury-type items, journals, coffee, tea… spa items, just, like take a little break…

Elisa: Love in a box. Yeah.

Jess: … in the comfort of your home. Yes.

Elisa: I love it.

Jess: And we have an Amazon wish list, so people send in items all over the country. And we’re raising money for our first in-person respite center here in west Michigan. So, we’re converting a barn on the property where our son’s house will be. There’s a big white barn that we’re turning into a community respite center.

Eryn: Oh, how beautiful.

Jess: And then, if that’s successful, we want to create some sort of model that we can give to churches or organizations, like, this is how you do it. Do it.

Eryn: Wow.

Elisa: So, the caregivers come to the respite center, to… or, do you bring your special needs…

Jess: You would bring your child…

Elisa: Oh, okay, so it’s like…

Jess: … It’s for the children, so again, it’s that…

Elisa: … adult daycare kind of thing. Okay.

Jess: … Yes, take a break. Drop your child off, we’ll keep them entertained with activities and snacks…

Elisa: Mom’s day off. I love it.

Eryn: Yeah.

Jess: … and movie, and you go take a break.

Elisa: Yeah. That’s so smart…

Jess: Yes.

Elisa: … go get your teeth cleaned, yeah.

Eryn: That’s so [inaudible].

Jess: Whatever, take a nap, like…

Elisa: Yes, yes.

Eryn: Yeah.

Jess: … go on a date, whatever you need to do.

Elisa: Yeah.

Jess: So, yeah, there are lots of layers to what we do, and we’re always kind of pivoting and figuring out what families actually need, and it’s been fun.

Elisa: What would you say to somebody who needs help? You know, where do they start? Because you’re so overwhelmed just caregiving, you know, to think about trying to research. I mean, do they go to the Lucas Project and you give them some direction? What if they’re not in a state that has help?

Jess: I’d be happy to… Thelucasproject.org, or I’d say start with your local community mental health organization. There are usually a lot of resources to… to tap into that people are unaware of…

Eryn: Okay.

Jess: … Or reach out to your local church. Churches are getting better at this, and that’s part of our future vision with the Lucas Project is that… churches have the facilities, they have the congregations, the volunteers, and my message to the church is start providing some respite opportunities for these families, because they’re drowning. They’re isolated. You don’t see them, because the world is not made for families like mine…

Eryn: Yeah.

Jess: … And so they just sit in their homes, exhausted, anxious, stressed, nobody sees them, reaches out to them, and if you’re not even comfortable providing that respite component, like, set up some meals. Like, have the small groups bringing some meals over, and just being inviting and welcoming to these families, because we don’t see community very often.

Eryn: Yeah. One thing I want to, kind of, I want to go backwards just a little bit. At what point did God woo you back into being in relationship with Him, and letting go of the anger?

Jess: I don’t think there was…

Eryn: Okay.

Jess: … a single breaking point. It was a continuous, like, wrestling…

Eryn: Okay.

Jess: … I remember just wrestling a lot throughout that period and Him sort of being, like, I am God and you are not… So, a constant surrender, and then… starting to wrestle all over again.

Elisa: Did that make you angry, though? [Laughter]

Jess: No, it didn’t. And that’s kind of been the resounding theme of my life, surrender. And what He says to Job, like, I don’t owe you an explanation. I’m God and you are not.

Elisa: I love the undercurrent that pulled you to this place and the yielding that’s happened. How would you describe your inner being now?

Jess: I knew that question was coming…

Elisa: Oh, sorry.

Jess: … it’s… it’s continuous. It’s really, like, waves is how I would describe it. I mentioned earlier, we have six teenagers right now, and blended, and grief, and all that comes with that package…

Eryn: You know, when you are a stepmom, there’s more on the line with how you respond and the presence that you bring…

Jess: Oh, absolutely.

Eryn: … because of the grief, and because of the complications…

Jess: Yes.

Eryn: … and the complexity of blended families.

Jess: Absolutely, yes. Because they don’t necessarily know that you’re not going to go anywhere. Like, my biological kids, I’ve always been there. Mom’s here, she’s always been here. But when my adopted kids, they lost a mom. She left. Not on her own accord, but still, in their little minds, she left. She, like, abandoned us, and that’s just kind of the thought process. And they… they will have to work through that at some point in their grief. And that’s their journey, but those rejection issues as new mom can run very deep.

Eryn: Yeah. What is the biggest thing you’ve learned about yourself in experiencing grief?

Jess: That I don’t think it ever really ends. It just becomes different. I kind of thought I had a really good handle on it, even initially, meeting a new man and the endorphins are, you know, high and everything’s romantic and fun, and… and now, as my kids are graduating from high school and going off to college, I find all these secondary losses are really hard. Like, your dad would’ve been so proud of you, I wish he could see what you’ve become, and how great you are, and it doesn’t’ detract from my joy in my new life, like [music], if I bring Jason back, then I lose four of my kids. I lose Ryan, so, it’s just this tension that you have to live with. And I think it’s just part of being a human being. It’s just there. Like, we can’t make it better, and it’s why I think our hearts yearn for eternity. We weren’t necessarily made for this world. Like, we were made for something better, and I guess I’ve never lost my faith that it will all be made right and whole again someday.

[Music]

Eryn: I appreciate that we can grieve what we had and still recognize that there’s beauty in the life we have.

Elisa: Oh, me too, Eryn. That was a powerful word from Jess. But before we go, make sure to check out Jess’s website, the Lucas Project, for more information about her and the organization. You can find the link for that and our blog at godhearsher.org. That’s godhearsher.org.

Eryn: Thanks for joining us. And don’t forget, God hears you, He sees you, and He loves you, because you are His.

[Music]

Elisa: Today’s episode was engineered by Anne Stevens and produced by Jade Gustman and Mary Jo Clark. We also want to thank our listeners in Australia and New Zealand for all of their help and support. Thanks everyone.

[Music]

Eryn: God Hears Her is a production of Our Daily Bread Ministries.

Show Notes

  • “God and I have gone through a lot of wrestling together with anger.” –Jess Ronne

  • “I’m a doer, and when I see a problem I say, ‘How are we going to fix this?’” –Jess Ronne

  • “It’s an honor to do this work, but we all need breaks.” –Jess Ronne

  • “I don’t want to be his forever caregiver, I want to be his mom.” –Jess Ronne

  • “The child is only as healthy as the caregiver.” –Jess Ronne

  • “I don’t think grief ever really ends, it just looks different.” –Jess Ronne

  • “We weren’t necessarily made for this world, we were made for something better.” –Jess Ronne

Links Mentioned

About the Guest(s)

Jess Ronne

Jess Ronne is an author, speaker, podcast host at Coffee with Caregivers, associate producer of the Unseen documentary, and caregiver advocate. She is the founder and executive director of The Lucas Project, a non-profit dedicated to providing recognition, resources, and respite support for special needs families. She and her husband Ryan live in Michigan with their eight children, including their son Lucas who has profound disabilities. Her story of beauty from ashes has been shared on The Today Show, Daily Mail, and Huffington Post and is detailed in her memoir Sunlight Burning at Midnight.

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