Making Room for Messiness | with Jess Ronne

"I'm not sure I want to be a part of a church that's not full of misfits."

Many churches work hard to create welcoming environments, yet countless families still feel unseen, isolated, or unsure if there is truly a place for them.

In this episode, Jess Ronne, founder of The Lucas Project, caregiver advocate, author, speaker, and mother of eight, shares what she has learned through years of caring for a son with profound disabilities and supporting other caregiving families.

Together, we explore:

• Why so many caregivers feel invisible in church communities
• The unique challenges faced by families navigating disability and chronic care needs
• What churches often misunderstand about belonging and support
• Why vulnerability creates deeper community than polished appearances
• The importance of making room for people whose lives don't fit neatly into the program
• How caregiving can reshape our understanding of discipleship and service
• What it means to be truly seen, known, and supported
• Why some of the people Jesus gravitated toward would have been considered "misfits"

This conversation is ultimately about more than caregiving. It's about the kind of community we're building and whether there's room for people whose lives are messy, complicated, and difficult to explain.

Learn more about Jess and her work:

• thelucasproject.org
• jessronne.com
• Unseen: How We're Failing Parent Caregivers and Why It Matters

If you care about Christian communication done with more creativity and integrity, come see what we’re building at contrarytopopular.com. 

Transcript

Making Room for Messiness | with Jess Ronne

Jess 0:01

Anybody who was really messy and kind of a misfit, Jesus almost gravitated towards these people because they didn't have it all pulled together. I'm not sure I want to be a part of a church that's not full of misfits.

Documentaries

Julianne 0:14

If church is supposed to be a place where people are known and loved and supported, why do so many people feel like they have to hide the hardest parts of their lives? I'm Julianne Rhodes, and this is Contrary to Popular. Today I'm talking with Jess Ronnie. She's an author, speaker, caregiver advocate, founder of the Lucas Project, and mother of eight. We're talking about how churches handle the messiness of everyday life and how we can build better community to support those who are struggling. Jess, one of the ways you've helped people understand your world is through a documentary that featured your family. So tell us about that project and what inspired you to create it.

Jess 0:53

The official title is Unseen How We're Failing Parent Caregivers and Why It Matters. It was my idea. I partnered with a filmmaker and a producer. They followed us around for about four years. And it's basically an awareness campaign to kind of peel back the curtain of the life of a special needs family and not just a special needs family, but a family raising a profoundly disabled individual who will require lifelong care and the impact of that experience on the family, on the individual, on society, and how that ripple effect even will continue as this individual ages, because we don't have a lot of options for these families. So that documentary was completed in 2022, and we have been creating a new documentary for the past couple of years called Uncertain, The Search for Supported Living for Disabled Adults, because that was the next hurdle that my family encountered with our son Lucas. Once he became an adult, it was like, okay, now what? What's the next step? Here in the United States, we just don't have very many options. And the waiting lists are so incredibly long, which is why we took matters into our own hands a couple of years ago and said, well, we need to create something for Lucas because the government's not going to swoop in and save us, and nobody's going to swoop in and save us. And so we actually created a group home for him. And he's been living in his own group home now for about two years. We recognized at that point too that he desperately wanted his own adult experience just as much as any of our other typical kids who, you know, 18, 19, 20 years old, fly the coop, go to college, get a job, get married, whatever that looks like. Like Lucas wanted that as well. And that was that was hard to accept for a long time as his mom, but it's been an incredible experience for the whole family seeing him thrive and like giving us a little bit of breathing room back at home.

Being in Church

Jess 2:53 Julianne 2:54

And you guys are a Christian family who have been active in church. So I kind of wanted to hear about what has that experience been like for you to be in the Christian community with these needs that your family has had, and what has that been like for your family to try to come and be a part of that?

Jess 3:12

Uh well, a little bit of context. I think we moved about seven times in 10 years, um, always in search for better resources, better support for Lucas, basically that that perfect place where we could finally find community and be supported. Oftentimes we would encounter smaller churches that would say, well, just bring him into the service. And that doesn't work for our family. Lucas has level three autism, he's nonverbal, he's incontinent. And as he aged and began to go through puberty, he became very aggressive. So to bring Luke into a church service would be Luke screaming at the top of his lungs, trying to pull our hair, pull our arms, or so that disrupts our worship, it disrupts everybody else's worship. And so we often just decided to either stay home and watch church on TV, or we'd often go to the park. And we called it church at the park. But yeah, I hear that across the board. And that's one of the reasons so many special needs families don't attend church. And then when you try to talk to churches about the need, I often hear, well, there isn't a need. We don't have these kinds of families in our church. And my response is, well, you just you don't see them. They're in the community, they're out there, but the the church hasn't been a space where they can worship freely because of their circumstances with their child.

Luke's spiritual growth

Julianne 4:36

What have you found with that level of disability? What have you found Luke needs spiritually? And have these churches that do have this program that's working, have they been able to provide him some kind of spiritual support and growth?

Jess 4:56

I'll just kind of paint a picture of what it looks like now at the church where he attends. He attends with his group home. And so they bring the four residents along with staff and they join us in the main sanctuary for the praise and worship. They all enjoy music. And so, and I think it's a really beautiful thing. They wheel them, most of them are in wheelchairs, or Luke can walk with assistants, and they all come down the main aisle, and so the whole church is aware of them. They all know them, they sit them in the front row, which I love too. The last shall be first and the first shall be last. These individuals are part of our congregation and they participate in the praise and worship. And then when the young children are excused to go to Sunday school, um, Sunday crew is what the special needs young adults ministry is called, is also excused. And then they go to a different section of the church and they do an appropriate lesson that they can handle. Um, and so, in terms of Luke's spirituality, as his mom, I've always said, I feel like Luke is closer to heaven than I could ever hope to be, or most of us could ever hope to be, because he doesn't carry the stress or the chaos or the cares of this world on his shoulder. Like I know the Holy Spirit meets him because when that music is playing, he is like enraptured in heaven. He closes his eyes, he sways his big head side to side because his head is huge because he had hydrocephalus at birth, and he is just communing with his father in heaven in a way that is I his siblings have often commented to me, you know, I think Luke sees angels because he'll even like look off and he's completely mesmerized by something that we can't see. So I don't know that the same veil that separates those of us who are like typical from the eternal separates Luke from the eternal. I think he gets a little bit more of a glimpse into what that next sphere looks like than we are privy to. It's like Christ says, unless you become like a little child, you shall not enter the kingdom of heaven. And even the Mary and Martha story, I feel like Mary basking in the presence of Jesus, where Martha's doing all of these things. Yeah, that's Lucas's experience, is just to bask in the presence of his heavenly father. And why don't we do more of that? You know, we're we're so caught up in all the things of this world, and he's modeling what our walk should look like.

Messiness

Julianne 7:43

Yeah. So this kind of brings up a bigger issue that I see in the churches that I want to talk about. But with your unique perspective on all of this, how do you view church's general tolerance for messiness inside the church body and in the service and just the whole experience of being a Christian?

Jess 8:06

Uh well, I can sum it up by saying we have never found a church that's willing to change a diaper uh from five to 21 years old. Um and that's just been my overall experience, generally speaking. And yes, I get it. Um it would make me uncomfortable to change a 21-year-old individual's brief. Um, but then I think too, would Jesus do it? And and I think he would. I truly believe he would. Jesus would be in all of those super messy, uncomfortable spaces. I think Jesus would chase after the child who's eloping, Jesus would sit in a corner and try to comfort a child who is self-harming or headbanging. So I think really challenging ourselves as believers, and this extends beyond just disability and special needs too, to anything that makes us uncomfortable and asking ourselves, would Jesus be in the middle of this space? And if so, then that makes it holy work. And if it's holy work, and if I'm desiring to become more like Christ, then I should also push myself to serve in this capacity as well.

Julianne 9:28

Yeah. So every church I've ever encountered, they really hold tightly to a schedule. You know, we worship for this many minutes, we do this many songs, we stand, we sit, everyone's quiet, everyone has their head down at this part, you know, it's it's very controlled, very structured. And I'm an administrative thinking type person. So from that perspective, I get it. I get that you want everything to be smooth and beautiful and give people the experience that you want them to have. But what's your take on that approach to being the body of Christ? Is putting us in these very structured, very controlled experiences when there are not just the special needs people, but I mean, all of us have messiness, right? We have emotions that aren't polite, we have questions that are hard to answer, all these things. I guess what is your take on the way we're sort of doing church and how that affects our natural human need to be messy?

Jess 10:40

That's an interesting question. And I'm wired a lot like you. I like structure and control, and I like to know what to expect when things get a little too spirit-led, even sometimes. I'm like, oh, what's going on here? Um, and I've been in situations where I'm kind of like bracing a little bit. You know, a couple of months ago, we were my husband and I attended a church, and it was a church that was doing disability ministry very well. And I kind of looked at them and it was kind of chaotic. Like it was sort of like anything goes. And there were a lot of people there that didn't fit the typical mold of like conservative, nicely dressed, you know, showing up as their best selves, knowing how to behave, to put it nicely. And I turned to my husband and I was like, Goodness, this church kind of feels like it's full of misfits. Like it was just sort of like, oh, what is going on here? And he turned to me and he said, Yeah, think about who Jesus hung out with. And I was like, Oh, and he said, You know, I'm not sure I want to be a part of a church that's not full of misfits. And I thought, yeah, you're right. I mean, the tax collectors, the prostitutes, the disabled, the hurting, the anybody who was really messy and kind of a misfit, Jesus almost gravitated towards these people because they didn't have it all pulled together. So I think it's people like you and me who probably have to adjust our thinking more so than like the uncontrollable that occurs in the church. And then countering that too, with there are verses where I believe is it Paul who talks about, you know, having an order in church. So providing those spaces and going back to the church that our Lucas attends to, where sometimes during the song service, you know, those individuals in the front row, they're hooting and hollering, and because they're getting excited about the music and they're not adhering to maybe appropriate behavior. So that occurs for 20 or 30 minutes while we're singing, but then they are excused to go to a more appropriate environment where they can hoot and holler and be loud and be their authentic selves, and it won't disrupt the rest of us. So I think it's just finding that balance within your congregation. And the beautiful thing is too, so they stay there for the song service and then we all greet each other. And people have now come to recognize them as being a part of the community within the church. And people go up and they shake their hands and you know say, It's so good to see you, Lucas. And he smiles, like, you know, he he doesn't really return the handshake, but he's being included and he's being welcomed into his community. So I think that's a really beautiful thing. I love that. I'm sure he loves it. Yeah. And then he can go to the environment where he can, you know, holler and and be obnoxious and you know, do what he needs to do freely, but it doesn't disrupt the rest of us.

Being the Village

Jess 13:58 Julianne 13:59

So you've talked a lot about kind of this the structure that the church offers or doesn't offer, and that's a decision made by leadership, right? And what they feel like their ministry can handle. In your mind, what does being the village look like in support of not only the people with the needs, but the caregivers as well?

Jess 14:17

You know, we have all these small groups, like this is kind of this big thing in churches. And I haven't seen this occur. I would love to see it occur where small groups begin to almost adopt a family. When you're in a caregiving role, it is very challenging to not only get to church, but to engage in any kind of community that the church is offering because your needs are just so overwhelming at home. And I think through the small group effort, you take away some of that fear that's often present because the group can come together and serve the family rather than just one individual entering into this situation. But if you have three or four or five families that are like, we're gonna enter into this family's hardship together and we're gonna learn together, we're gonna figure this out together, like there's strength in that and there's courage in that. But the goal is to either, you know, give mom and dad a break or give mom a break where she can go for a walk and de-stress for a little bit or go get groceries or whatever. They'd be helping with meals, maybe doing some lawn care, some laundry, or but instead of having this expectation that this family that's going through a really challenging time come to church, we're gonna enter into their home and we're gonna support them in whatever ways they need support, and we're gonna be the hands and feet of Christ in their environment and meet them where they're at.

Consumption vs Jesus follower

Julianne 15:51

I feel like the way church is set up, it doesn't lend itself to what you're saying. It lends itself to I am here to consume, I'm here to have a worship experience, and then I'm here to hear a funny little joke that the pastor opens with, then hear 30 minutes of some kind of Bible teaching. So I don't have to go home and study it. He studies it for me. I take it in and then I go home. And I mean, even if you look at statistics of how many church members who come on a Sunday are even in a small group, I mean, it's sad, right? The percentage is low, and I don't have those numbers, but but that's always a push that churches are trying to do. It's really important you get into a small group, get into a small group, and people aren't. It's like the whole mentality of what being a Christian and going to church looks like. It's not even for most people going as far as joining a small group so that they can get more plugged in in the ways that you're talking about. And so I don't know. I just wondered if you have any vision for that sort of bigger picture. Do you think that churches need to change systemically the way that they're going about being like Christ?

Jess 17:10

Yeah, that's a big question. I do see it as a massive problem. And I recently read John Mark Comer's book, Is it Following the Way? It's about becoming truly a Jesus follower. And I think so many of us do. We show up in church and we check it off our to-do list and we sing our song and we listen to our 30-minute sermon, and we are not truly plugged in as Jesus followers. And what does that look like as a believer? It's not showing up here and singing your little Diddy and eating your donut and getting your coffee afterwards, it's entering into those hard and complicated and messy spaces, and it's joining the small groups and it's finding that community. And that takes conviction and it takes courage to say those things from the pulpit. And you might even lose some members. But if you're truly invested in following the way and becoming like Jesus, then you study the life of Jesus and you enter into those areas of messy servitude like Jesus. You serve those that are really complicated to serve, and you show up. And it starts with discipleship. And I think we're lacking in discipleship. We often have these moments where let's get as many people to feel good with the smoke and the loud music, and let's get people to the altar call. Hallelujah. They're saved, they're on their way to heaven, and there's no follow-through. Okay, now are you serious? You accepted Jesus. Now let me tell you what that's actually going to look like. It's going to be crucifying your flesh daily, like Christ did. It's going to be laying down your life. It's going to be figuring out what area are you going to serve in? How are you going to serve? And I think, again, that takes courage from the leadership. You're going to push some people away and they're going to say, you know, this is too hard to be an authentic Jesus follower. And when you push people away, and from somebody who founded a nonprofit as well, you don't want to push away donors. That's how that's how you fund your ministry. It's how the pastors get their salaries. It's a fine line. Uh, do you want to truly push the gospel and usher in the kingdom of heaven here on earth? Or is it more about you know, keeping membership and keeping those funds flowing to the appropriate people?

Ok to have needs

Jess 19:41 Julianne 19:42

Yeah, I think a lot of people think going to church is getting closer to God, which it is, right? And also for me to praise my heavenly father. But there's this other piece altogether that the body is about meeting each other's needs, right? And we think of the orphan and the widow, right? You know, those are named in the Bible, but there are so many needs that don't get met. And I think if we have this environment where it's not a normal practice to be meeting the needs of others, what that does is it keeps people from feeling like they should even name what their needs are. And so you have people coming to church who their marriage is on the rocks, but they're not going to tell anybody that they have the cancer diagnosis and they're freaked out about it and they're not doing real well. And and, you know, maybe people say, Oh, you know, the Lord is good, the Lord has a plan, but they don't have to argue. Yep. Yes. And they have trouble saying, No, I'm I'm about to lose it, or, or my kids are driving me crazy, or I think my son has a learning disability and I don't know what to do about it. Whatever the needs are, they feel like church is not the appropriate place to bring them. And I think that is a travesty.

Jess 21:00

So talk more about that. Yeah, my perception of church has actually kind of been shifting over the past year or two. We drove down south a couple of months ago. Something I noticed as we were driving, like through Alabama and Mississippi, all the way down to Florida. I said to my husband, there are these tiny little churches everywhere, just these little churches that maybe held, you know, 15 to 100 people. And I thought, I think that's what church is meant to be. It's actually a community, it's like your extended family. And I feel like church was meant to be a gift to us from the Lord, not necessarily us providing our presence to God by going to a church, but it was a communal gift from God. Like here's your community. You're supposed to do life together. You're supposed to know each other, like you know your family and all the secret sins and all the messiness and murkiness. And when somebody gets married, you celebrate together and when Somebody has a baby, you gather around this person, you help them out. And I think our modern church has gotten so far away from that where we don't really know each other, we don't show up for each other. Our mega churches are so big. And it's I am currently searching for that small body that I can get plugged into where I am truly known and loved in spite of my quirks and insecurities and all the things that make me me. And I can extend that same love and grace to those around me. And I think if we could get back to those smaller communities, we would have what we're all so desperate to have, like a group of people who truly know us and love us and celebrate well with us and mourn with us and do life with us. But it's something that I've been wrestling with, and even considering the idea of a home church where a couple of families come together and worship the Lord and dig into scripture and we share our needs authentically with one another because that's what I yearn for, and I think that's what most of us yearn for.

Julianne 23:09

Yeah. And it could be a product too of if we need to hear a good sermon, we can turn on YouTube, we can read a book. I mean, like absolutely right. You can't take a step without tripping over a Christian influencer who wants to teach you about some Greek word, you know.

Jess 23:24

Yes, exactly. And if church is supposed to be more like community, then how do we obtain that? And then that's such a hard question, too, because even thinking about you have to really become vulnerable and let down your walls to get that close to people. And most of us are not very good at that either.

Julianne 23:46

Yeah. I think that's exactly it. It requires a shift from a performative environment where you have to show up in your nicest clothes and your best smile, and your kids have to be polite and behaved, to being able to show up authentically, even if it's messy, even if it messes with the order of service a little bit.

Jess 24:12

And that's the gift of having a child like Luke, is I lost that perfect world, Pinterest perfection a long time ago. Um, when you show up in public and your kid is screaming and you know, grabbing people and trying to put people's heads in his mouth, and you're just like, sorry, like you just get over it pretty quickly. Um, and it's a gift, it really is. I'll be 50 next year, and I just I I don't care about any of that stuff because I think I raised Lucas for 21 years, and you know, there are far bigger things in the world to be concerned about.

Caregivers' struggle

Julianne 24:52

Do you feel like caregivers feel a pressure to perform as good Christians who, despite their hardships, they're putting on a joyful countenance in the midst of it all or whatever?

Jess 25:08

Um, and it's those sayings like God doesn't give you more than you can bear, and this just must be your cross to carry. And with Lucas, when I was pregnant, I was told he was going to die. He had a stroke in utero, and then he was born, and everybody rejoiced your miracle baby lived. And so there wasn't any help really. You have your baby, he didn't die, you didn't bury him. And we went home and we didn't sleep for three years. We were absolutely exhausted. And then I saw that shift occur again when he moved into his group home. Everybody was rejoicing. Oh, now you're free, and this is amazing. And it was like, Yeah, but for 20 years, my whole identity has been wrapped up and care. Like, there was a deep, deep grieving process. And I also saw such a contrast between my caregiving experience with my late husband for three years and raising Lucas for 21 years. I had more help than I knew what to do with from the church with my husband, because the church understood that kind of caregiving. And I think the church also understood that that was going to end at some point. It was more short-term. Whereas with Lucas, the church has really never had any idea how to step in and help with him. And so I feel like it's easier often for the church or for people in general just to avert their eyes and pretend like everything's fine. She has her miracle baby. So let's just all get on with life and you know, pretend like everything's great.

Julianne 26:54

So if you could give advice to somebody who is experiencing a need that they don't feel like the church village's been good at meeting, what's the best way to ask for help? To ask another brother or sister in Christ, because as simple as it sounds, they get stuck on the I don't know how to ask.

Jess 27:17

That's hard because I feel like I asked for help for years and years and was, I mean, so open and honest and vulnerable about our struggles. We created a whole documentary about it. I've written books about it. I I've posted about some of my darkest days on social media, and still it was generally crickets when it came to actually getting help for our family. I can say that in terms of churches, I have found that the smaller churches tend to be more receptive to really providing tangible help. And I think what I've learned is the smaller the church, the less bureaucratic tape they have to wade through to allocate some of those funds to a family that might be struggling. They go before the elders, we talk about it, this seems like a good idea. Why don't we try it? And then in terms of asking somebody outright for help, I think it's finding a trusted person and just laying out your needs and maybe understanding that this person might not provide respite care for your child or your loved one because that might be a little bit daunting if they don't understand the diagnosis. But have a list of a couple of ways that maybe they could provide help, and maybe that's meals or lawn care or cleaning your house or picking up meds. Caregivers are notorious for having sort of this martyr caregiver syndrome where, you know, people would ask two throughout the years, how are you doing? And I'd be like, Oh, I'm fine, everything's fine, everything's great. It wasn't like I was completely drowning. So what I've learned to say to people who want to help is don't leave it open-ended. Say something like, Hey, I've noticed you're going through a challenging time. I'd like to bring you dinner. Do you prefer tacos or lasagna? I'm gonna leave it on your porch Wednesday night. You don't even have to come to the door. I'll leave it there at five o'clock, you know, or I want to bring you some homemade desserts or whatever that looks like. Learning to not leave it open-ended is huge because we typically are like, everything's fine and it's not. And then just show up with that meal or pop a couple of gift cards in the mail for gas or for takeout. Um, that's another really easy way to just lend a hand, let somebody know that you are thinking about them. And it all begins with relationship, really, and trust. So establishing that relationship, establishing that trust. And then as time goes on, you might both find that you're more comfortable, like allowing this person to actually come in and provide a break or extending, you know, services beyond just those meals on the front porch. But we have to lay that foundation for that relationship first and for that trust to occur before we can move into those next steps.

Julianne 30:09

Yeah, that's really good. I love that the being specific. People are always like, well, if there's anything I can do, let me know when you've lost a loved one or anything like that. And it's like, well, first of all, I don't know if you mean it. And second of all, I'm so overwhelmed that I don't even know what to ask you to do.

Jess 30:25

So yeah, offering something specific. And I know for me too, it was like, oh, somebody's coming to bring me dinner. So now I gotta put my makeup on and fix my hair and just remove that from the equation. You know, just I'll leave it on your front porch, you'll be there at five, enjoy, done. Um, and that just makes it super simple.

Uncover the needs

Julianne 30:44

I love that. Okay, so last question. So if a church leader is listening to this and thinking, okay, I think maybe we've created a structure, an environment that is very polished, very put together, but maybe in doing so, we have not allowed people to show up as authentically as they really need to. Where should I begin to make a shift here? Yeah, huge question, right?

Jess 31:18

Where to begin? You know, people want to feel safe and secure and seen. Safe, secure, and seen. So, how can we extend that to people who are showing up in our building? And maybe it begins with like note cards on a Sunday morning, allowing people to write down the deepest desires of their hearts and what they're going through on a note card, and maybe even extending an offer with a microphone for people to share those from the pulpit, and then allowing other people to step in to that space and help out if possible, or starting with a class, even where it's not the entire church. It's hey, we want to dive into some of the messiness of life. If you're going through something messy or complicated, and you want people to step in and to be able to serve you, maybe it's starting a care ministry where the care ministry takes on those burdens, those challenges, and they attempt to meet the needs in a tangible way through freezer meals or whatever that might look like. But yeah, it's it probably has to start small and again, very safe environment for people to feel like they can share vulnerably. It's probably a care ministry and then allowing people to submit their requests and to then address those requests as they come in.

Julianne 32:44

Yeah, I think that would be so cool, even to survey your congregation and ask, even anonymously to begin with, but just tell us what it is that you're struggling with, you're having trouble with. What is it that you love or looking for, even? And then that could just that data. I'm kind of a data nerd, but that data could inform the direction of wow, maybe we need some more small groups around this. Maybe we need to beef up this certain ministry. And I don't know, that could be really interesting just to kind of let people be vulnerable, but sort of anonymously, and they might actually be more honest that way, right?

Jess 33:22

That's very true. But yeah, I mean it has to start somewhere and it starts with conversations. And so, how are we going to facilitate these conversations in a safe way where people feel free to open up?

Julianne 33:36

Yeah. Okay, so let everyone know how they can connect with you. I know you've written several books, and we you've got the documentary coming out, and you even offer some mentoring options. So tell us where we can find you.

Jess 33:51

Yeah, I'm at jessronne.com and then thelucasproject.org at the nonprofit website. We do have some resources, some free resources for churches if they're interested in creating some sort of disability ministry. My website, I have all my books listed, the documentaries, the podcast, and the mentoring information. So head there and you'll find all my things.

Julianne 34:16

Wonderful. Thank you so much, Jess. This has been awesome.

Jess 34:19

Yeah, thank you.