Author, speaker, and special needs mom Jess Ronne joins Stephanie Daniels to talk about her family’s story of beauty emerging from the ashes. She also offer insight into tangible ways to support families facing difficult seasons. Jess is the founder of The Lucas Project, named after her son with profound disabilities, which provides recognition and respite for parent caregivers. She and her husband Ryan, both of whom lost spouses to cancer before blending their families, have eight children, an encouraging story of finding hope through hardship, and a heart to serve others coping with deep and complex suffering.
Author, speaker, and special needs mom Jess Ronne joins Stephanie Daniels to talk about her family’s story of beauty emerging from the ashes. She also offer insight into tangible ways to support families facing difficult seasons. Jess is the founder of The Lucas Project, named after her son with profound disabilities, which provides recognition and respite for parent caregivers. She and her husband Ryan, both of whom lost spouses to cancer before blending their families, have eight children, an encouraging story of finding hope through hardship, and a heart to serve others coping with deep and complex suffering.
Learn more about The Lucas Project, which provides resources, respite, and recognition for parent caregivers of children with disabilities.
Explore Jess’s books:
Caregiving with Grit and Grace: For caregivers, this book offers solace for your journey and extends a heartfelt invitation to view your role through the lens of eternity.
Sunlight Burning at Midnight: Jess’s memoir offers an inspiring and encouraging story of faith forged through deep suffering, hardship, and unexpected joy.
KEY QUESTIONS:
KEY SCRIPTURES:
Stephanie Daniels:
Hi friends! I’m your host, Stephanie Daniels, and you’re listening to the Joni and Friends Ministry Podcast. We’re sharing hope as we answer real questions about disability. Join us every week for an honest and encouraging conversation, along with practical ways to include people with disability in your church and community. So, grab a seat, and let’s jump in!
Jess Ronne is no stranger to caregiving. Growing up as a caregiver for her siblings, she was called to a new level when her son Lucas, was born with significant disabilities. Over the next few years, Jess faced heartbreak as she became a widow and a single mom of four. But God's grace is so evident in her life. Jess was remarried to her husband Ryan, who was also a widower. Together, they lovingly parent eight children in their beautifully blended family. Jess also leads the Lucas Project, an outreach organization committed to supporting individuals with special needs, and she's an author, advocate, and podcast host.
Welcome, Jess. I don't know how you manage it all, but I'm excited to have you here today.
Jess Ronne:
Yeah, I'm excited too. Thanks for having me.
Stephanie Daniels:
Absolutely. Well, can you share a bit about your life growing up as the eldest of eleven siblings? What did you learn about caregiving at that time?
Jess Ronne:
It was just my normal. I see these pictures of myself as a 2-year-old little girl with my arms around my newborn twin brothers, Zach and Zeke, and recognize now at 48 years old, you know, goodness, I was in a caregiving role most of my life. And then my mom and dad had another child every two years or so.
When I was 10 or 11 years old, even one of my newborn twin sisters moved into my bedroom. So, I had twin brothers and twin sisters. And I helped care for her throughout the night, and I loved everything about it. I was referred to as a little mommy by all of my mom's friends. They would come over and say, what a good little mommy you are.
I really relish that role. I enjoyed helping out. I think as I've aged, I've processed more the toll that that took on me as a young girl. I don't know that I really engaged in a lot of childlike play because there were so many responsibilities on me, but it was just my role in life, and I really enjoyed it. I wasn't resentful as a child.
Stephanie Daniels:
Hmm. That's so good, 'cause I can think back to relationships I've had with friends that came from large families and typically the older ones were the ones caring for their younger siblings, and maybe there was some resentment.
But I was always envious of that 'cause I loved babysitting, and I think as girls that nurturing sense is in us already. So, I think that's so cool to come from a large family and get to practice mothering from such a young age.
So, can you walk us through your next few years? You got married and you started your own family. Can you tell us about that season?
Jess Ronne:
Yeah. I was married young. I believe I was 23 years old when I married my husband, Jason. We were happily married for about two years and excited to start a family and found out we were pregnant. I gave birth to my first child, Caleb, in 2002. And I loved motherhood. I just absolutely loved it, loved caring for this new human being. I loved being at home with him. I loved taking him to the parks and running errands and everything about it. We were very eager to add to our family, and we're excited to find out we were pregnant again about a year after Caleb was born.
Stephanie Daniels:
Mm.
Jess Ronne:
Everything was going fine, I thought. I was scheduled for my 20-week ultrasound appointment. I went to this appointment and that's where my life completely pivoted. I was told that my unborn baby had experienced a stroke in utero, and there was very little hope. The doctor suggested that we terminate and try again. In her words, "You're young and healthy, you won't have any problems getting pregnant. It's just nature's way. These babies aren't supposed to make it."
My husband, Jason and I knew that termination was not an option for us, and we put the baby in the Lord's hands and we were committed to praying for a miracle.
Stephanie Daniels:
Yeah.
Jess Ronne:
We had hundreds of people praying for this baby. And Lucas was born on August 12th, 2004, came out screaming with life and I just wept in relief. My miracle baby had made it. He spent two weeks in the NICU and underwent brain surgery at one day old. And then...
Stephanie Daniels:
Wow.
Jess Ronne:
...we were sent home with our baby with kind of this umbrella diagnosis of special needs and this admonishment of, you know, "Good luck. We'll see how it turns out." And we went home just like, "Okay, well we're just gonna dig in here and figure out what we need to do to get Lucas to become like a typical child."
Stephanie Daniels:
Mm.
Jess Ronne:
That was kind of the goal. Get him the therapies, the nutrition, the supports, the resources so that we could get back on track to having our normal, typical family...
Stephanie Daniels:
Yeah.
Jess Ronne:
...is kind of what our plan was.
Stephanie Daniels:
Yeah. I was starting to read some of your memoir, going to the doctor that day and having that visit and hearing that news. One of the things you said, and I feel like this maybe summed up that season a little bit where you said, "I'm heartbroken but hopeful." You really pointed out too, you learned how to pray without ceasing in that season and that your husband was a man of prayer as well in that space. How important was prayer for you all in that season of getting the news and how did you keep your mind on positive things?
Jess Ronne:
That's a good way to phrase it because it was an intentional choice for us. It was a very intentional choice to stay close to the Shepherd. It was about a four-month period of time between the diagnosis and then giving birth to Lucas. And it was an extremely lonely period for me because I was the mother carrying what the whole world saw as a dead baby in my womb. I was the foolish one. Why wouldn't I just terminate, try again for a healthy baby?
We were told there was no hope for this child, and so every day that I'm living with this, I'm still feeling life. I'm feeling Lucas kick. I'm feeling movement. He seems to be getting stronger, but yet I am preparing for what the doctor said was: “He will probably die, and you will either give birth to a dead baby, or you will have to bury him shortly after he dies.”
So, I am like teetering between hope and despair all the time. And the only way I knew how to make sense of that was to invite the Shepherd so closely into my pain and my experience, because nobody else was going through it with me. Not even my husband. He wasn't pregnant. It was just me...
Stephanie Daniels:
Wow.
Jess Ronne:
...and Lucas and Jesus.
Stephanie Daniels:
Yeah.
Jess Ronne:
And so, for me, what that looked like, I dropped everything. I stopped working. I spent my days in prayer. I spent my days reading the Bible. I spent my days with praise and worship music just permeating through the whole house. The majority of my time was being completely saturated...
Stephanie Daniels:
Yes.
Jess Ronne:
... because I didn't know how else to get through that period without the Lord. And he did, he gave me the strength to continue even after we brought Lucas home. And he did have profound disabilities and that was very challenging to raise him. But he provided me with everything that I needed, every step of the way, as long as I continued to surrender to his will for my life and to be obedient to raising this very challenging individual that he called me to raise.
Stephanie Daniels:
There's so much in everything that you just said. I am struck by the phrase that, the world sees you as carrying a dead baby, but you feel the life inside of you. And I'm like, how many times have we all carried something that looked like it was dying? But we know that, whether it's a dream, or it is a child, or it's something that we feel the Lord has promised us, and placed within us. And it's really up to us, like you said, to partner with the Shepherd. I love that. And shut down all the, outside voices and the outside things and saturate our homes and our minds with his presence and with worship and with prayer in the Word. Wow. Wow. I can't imagine that dark season, but I know a lot of our listeners can resonate with it. Thank you for recounting that.
During your pregnancy with Lucas, the doctors informed you of potential health risks. And I know you responded with prayer and getting in the word and worship. But how did you respond in the moment getting that unexpected news?
Jess Ronne:
I responded in the moments, initially with fear. I think we all do. We dropped our knees in fear and trembling. It's a process to then get to that point of surrender where we're like, "Okay, Lord, I trust you." So, with every new proclamation that something horrific was going to happen to my child, I would have to go through that whole cycle all over again of fear, acceptance, surrender, obey, you know? But every time it would come again, it would be easier to recognize, okay, this is what's going on. So, let's get to that point of obedience faster. Let's not live in that fear space for too long because the Lord is with you in this.
Stephanie Daniels:
Yeah. Did you realize at the time that this was a call to be a lifelong caregiver?
Jess Ronne:
I didn't even acknowledge the fact that I was a special needs mom. It was like, okay, like I said, what therapies do we need? What nutrition do we need? How long do I need to nurse this child so that his brain develops accordingly and he wouldn't even nurse. So that was out of the question. I'm very much a problem fixer, and this is a problem and how are we gonna fix it?
Stephanie Daniels:
Yeah.
Jess Ronne:
I just went into action. I guess I viewed in my mind at some point Lucas might not be entirely typical without disabilities, but we were gonna do the best we could do to get him functioning and as typical as we possibly could. I didn't really even view myself as a special needs mom or accept the fact that I would be a forever caregiver until Lucas started to go through puberty, and that really started to shift for our family.
Stephanie Daniels:
And I feel like that's what any good parent would think. I just need to get whatever is necessary to help this baby thrive. And I was reading in another book where the mom was saying that exact thing, we've got this diagnosis, let's find whatever therapies are gonna help him move past this. So, I definitely think our families that listen, and any parent, would resonate with that messaging.
Jess Ronne:
I think that was part of my lack of acceptance so early on too, is we weren't really given a diagnosis. It was, he has hydrocephalus. Sometimes these kids go on to live completely normal lives...
Stephanie Daniels:
Hmm.
Jess Ronne:
...sometimes they don't. There wasn't like a specific, "This is what you're going to deal with". And so, I was just like, okay, I am gonna be optimistic and we're gonna put him in the category of, he might have a shunt, but he's just gonna be one of those in that category of living a pretty completely normal life. That's what we're gonna have faith for and that's what we're shooting for. And our situation turned out very, very different.
Stephanie Daniels:
So, when Lucas entered puberty, what shifted when that happened that changed your perspective and view of yourself as a special needs mom?
Jess Ronne:
When Lucas went through puberty, he became very aggressive. He was nonverbal. He needed assistance in every aspect of life. He was incontinent. He began to have behavioral challenges. He would lash out at his siblings, he would hurt himself, he would lash out at us. We received the diagnosis of severe autism, intellectual disability, and all of these diagnosis started to pile on top of one another, because that's when I was going to the specialist and the doctors and being like, we need answers. So, every specialist appointment, every doctor's appointment was like, well, you need an answer, here's another diagnosis. By the, time it was all said and done, he has eight or nine diagnoses, and many of them physical, many of them emotional, behavioral, intellectual.
When Lucas was a little boy, he was adorable, and so to find somebody to step into our life and help out with a 6-year-old who's nonverbal, who's in diapers, that's not such a big deal. He's an adorable little boy, it's not a big deal to change like a six-year old's diaper. When that 6-year-old turns into a 16-year-old and he's now screaming and he's still in diapers and he's becoming aggressive...
Stephanie Daniels:
Mm-hmm.
Jess Ronne:
...nobody wants to step into that situation anymore. And I think that's when I really began to accept how lonely our life was going to be. Because when we couldn't even hire help anymore, it was like, oh, this isn't gonna get easier. This is only going to get more challenging as Lucas ages and as I age.
Stephanie Daniels:
Wow.
Jess Ronne:
That's when that fear started to really kick in again, that cycle that I was talking about, that fear, acceptance, surrender, obey. And again, being the problem fixer that I am, I was like, okay, so how are we going to fix this problem? And that's when my wheels started turning as to what's next for our family and for Lucas.
Stephanie Daniels:
Yeah. Wow. That is heart wrenching to hear 'cause you don't think about that. If this is not something that affects your every day, you don't think about what parents who are parenting children who are severely disabled, intellectually and physically, and they're teenagers.
Jess Ronne:
Mm-hmm.
Stephanie Daniels:
And we don't think about what your every day is. I know so many parents are walking through what you have walked through and what you've just described, and so many emotions can go along with caregiving. It's a high calling and a joy to serve, but at the same time, there can be weariness, grief, and frustration and even anger that comes along, with having to do those tasks and walk that road. Have you dealt with any of those feelings and how have you coped with them?
Jess Ronne:
Oh yeah, anger's kinda my go-to emotion. In fact, I often contrast the two experiences that I've had with caregiving. You know, the first with my son Lucas, and then the second with my late husband Jason.
I experienced a lot of anger when I was walking my husband Jason through his cancer battle for three years. A lot of wrestling with the Lord, a lot of lamenting, a lot of, "Why, God? I don't understand in my eight years of marriage, why I'd have to walk through eight brain surgeries between my child and my husband."
I often say I stayed beside the Shepherd, you know, during that pregnancy with Lucas and I, I was done with the Shepherd during my journey with Jason. I was just like, you haven't done really all that great with my life, and I'm not feeling like this is all that fair, so I'm gonna do this in my own strength. And I never lost my faith, but there was a lot of anger up until the very end. And again, coming back to that surrender point. But yeah, absolutely. I've dealt with anger
Stephanie Daniels:
That just it just makes me wanna cry just because I understand when you get to that point in your walk with the Lord where you're like, where the heck are you? I've been faithful to serve you and love you and I just understand asking the Lord "why," and "how," and "why me," and I've been there when anger is my go-to. And I know so many people have. Was there Scripture that grounded you in those moments of being done?
Jess Ronne:
Psalm 91 has always been a favorite that I've often recited to myself, "He will command his angels concerning you." And Romans 11:36, about how everything comes from God and is used for his glory. So, anything we go through here in life, it's not about us. Everything we go through is to bring glory back to God.
Stephanie Daniels:
Yes.
Jess Ronne:
And understanding that. And then also I would read about Jesus in the Garden of Gethsemane. And that gave me permission to lament and to wail, and to ask. 'Cause, Jesus is God, and he's asking his Father, please take this cup from me.
Stephanie Daniels:
Right.
Jess Ronne:
I don't wanna go to Calvary. This is gonna be really, really hard. If there's any other way, please take this cup from me. And that has resonated so deeply with me in some of my darkest moments, in caregiving. This is hard, Lord, I don't wanna do this.
Stephanie Daniels:
Yeah.
Jess Ronne:
Please take this cut from me if there's any way possible, but not my will, but yours be done. And that's that surrender again, and again, and again. And that's what Jesus came to as well: but not my will, but yours be done. And that just has to be our posture with every, everything that we go through. But it doesn't mean that we can't wrestle and wail and ask "why." God can handle that.
Stephanie Daniels:
Amen. Yeah. I love that. I think that he welcomes that. He wants us to bring those hard things to him. And I just love that you shared that process of fear, acceptance, surrender and obey.
Let's get into the journey with your husband's cancer. After 10 years of marriage, you encountered a new heartbreak and your first husband passed away from brain cancer and you suddenly became a widow with four children. Did you have a church support system at that time? And how in the world did you even move forward from that?
Jess Ronne:
I did. I had a very strong support system through our kids' Christian schools and through the church. And honestly, the whole world felt like it was holding me up. This young mom with four children, six and under, one that's profoundly disabled, and her husband's dying of brain cancer.
The world rallied around me in a big way. And our community as well. And I just wanna speak to that because, it's always been interesting as I've been able to look back in hindsight and see how much support I had. I did not cook for three years. There were meals on my porch every single day. I didn't do yard work. I didn't take my kids back to school shopping. I didn't clean my house. Anything and everything that people could step in and help me with, they helped me with.
However, I contrast that with raising a profoundly disabled young man for 19 years and there has been almost nothing from the community, from the church, from schools, from anywhere, when it comes to that situation. And I hear this from families all the time, who have these children who are profoundly disabled. People don't know how to step in and offer help in that situation. And that's been my heart cry for these families. We desperately need help. We need the meals too. We need the yard work, we need the house cleaning, because that situation goes on forever sometimes. It doesn't end. But I don't really think people know how to step into a situation that doesn't end.
Stephanie Daniels:
Mm-hmm.
Jess Ronne:
Just really encouraging people who are listening. If you know of a family that has a disabled child like Lucas, they desperately need help and to offer some tangible ways that you can come alongside them and to help them out because they're drowning. Just like the family that's going through that cancer battle is really struggling. They need help just as much.
Stephanie Daniels:
I'm so glad you went there because we need to hear someone like you say, hey, just go do it.
Jess Ronne:
Mm-hmm.
Stephanie Daniels:
Like, I'm sure there's a way to do it and not be forceful. Sometimes...
Jess Ronne:
You have to be...
Stephanie Daniels:
...you have to be.
Jess Ronne:
You really do. Because we'll say, "Oh, we're fine, we're fine." They're not fine. And it really needs to be, "I'm bringing you dinner Wednesday night. Do you prefer tacos or lasagna? I will leave it on your front porch so you don't even have to see me. Or send some gift cards in the mail because it's like this caregiver martyr syndrome where we can't accept help, but we desperately need the help. So, it needs to be a little bit forceful.
Stephanie Daniels:
Yeah. Okay. Okay listeners, you heard it here. You have permission. That's great advice. I'm so glad that you're sharing this 'cause we had another guest, in our season opener, Roberta Dunn shares the same thing. We can sometimes feel that it's awkward, it may feel kind of like an intrusion, but her encouragement was for us to lean into the awkward. Whether it's come and do laundry or, "Can I come cook you dinner," or, "Can I make you dinner and bring it," whatever that is. But I love that you pointed out as well, people aren't gonna just tell you, we need this or we're struggling, "Hey, can you bring me food?" So I love that you're giving us permission, just like Roberta did. Just offer it, it'll be a blessing any way you slice it.
Jess Ronne:
Right. And I think too, a lot of people shy away from stepping into a family situation with a disabled child because they fear that they'll have to help provide care for that child. And I would just say too, there is no expectation. There are a million other ways that you can help a family like ours with the meals, the yard work, the laundry, the gift cards. But I do think that keeps a lot of people away from families like ours.
Stephanie Daniels:
Yeah. I just wanna encourage anybody that's listening, 'cause I'm encouraged, to just be a blessing.
Jess, your life took a turn when you met and married a widower with three children. What was it like to start a new blended family?
Jess Ronne:
It was really hard. It was, it was a lot. We were running on the endorphins of love for about two years, so that kind of kept us afloat. We were enjoying the ride. But yeah, there were seven grieving children who had all lost a parent.
And so being really intentional with all of those precious lives, and that was really challenging for me because my husband Jason had fought cancer for three years. And so, I had kind of set my kids aside to care for him, and by the time he passed away, I really missed my kids and wanted to reengage in life with them, like in normal life.
And then marrying a widower so soon after, and then adopting his three kids, I was feeling this tug-of-war between making time for my three new adopted kids and really being intentional about those relationships. But yet I really missed my four biological kids who I had kinda set aside. Honestly, our kids were so young, and they were so excited to have a new mom and a new dad, and I think because they were young, that made the transition much easier, and they were so excited for all these built-in playmates that they now had.
Stephanie Daniels:
Yeah.
Jess Ronne:
And we just saw a lot of joy really from them in those first couple of years and still to this day, they're all very close.
Blending a family is hard work, especially with all of the dynamics we had with the grief and the special needs and all the things.
Stephanie Daniels:
Can I ask how you guys met?
Jess Ronne:
Yeah. That's a really fun story. I blogged through Jason's cancer journey. A couple of months after Jason passed away, I came home, and I put my kids to bed and I checked my blog which I had continued to update. And a stranger from Pennsylvania left a comment on my blog and she said, "I have no idea why I'm reaching out to you to tell you this, but there's a young widower in Oklahoma whose wife passed away from brain cancer four days after Jason died. He has three young children and he's not doing very well, and I just think you could be a source of encouragement to him."
So, I went and found his blog and just left a little comment like, "Hey, we have very similar stories. If you ever want to talk to somebody, I'm here." Type of thing. Woke up the next day to an email from this man and Ronne, and within a week we were on the phone and within a year we were married.
Stephanie Daniels:
Oh, my goodness. That's incredible. Are you friends with the person that left the comment?
Jess Ronne:
Just Facebook friends we've never met.
Stephanie Daniels:
Oh, my goodness!
Jess Ronne:
She just said, “I felt like I had to tell you about this.”
Stephanie Daniels:
That's incredible. I'm struck by what can happen, as you're caring for Jason and not really getting intentional time with your kiddos, and like you said, you missed them once he passed. I'm just curious, as you and Ryan got together, what did that work look like to reinforce those relationships with your children, and his kids, and integrating all of that? How were you intentional? I'm looking at that like, like oy vey like...
Jess Ronne:
Oh yeah, and it was. It was. I'm trying to even think back. We just celebrated our 14th wedding anniversary.
Stephanie Daniels:
Oh.
Jess Ronne:
It's been a minute. Neither one of us worked for the first year. And we were really intentional about that decision. And we were fortunate where we could do that. We had some life insurance…
Stephanie Daniels:
mm-hmm.
Jess Ronne:
...where we could take that first year and be intentional about spending time together, because we knew we were dating with seven kids. Most people don't have to date with seven children. And then we were newlyweds with seven children.
We knew that we had to lay a very firm foundation. And what that looked like for us was praying together every morning. It was walking most nights after dinner together, just mom and dad. Going on a weekly date, just the two of us. It was hiring that help to come in and help with the kids, and getting away once a year so that we could really solidify our relationship because we knew if we didn't, there was no way that this family was going to work.
Stephanie Daniels:
Mm-hmm.
Jess Ronne:
Like we become that strong foundation for our children. And then just not working for that first year, it really did allow us that time to have with our kids. We got them involved in grief camps and grief small group. Ryan and I were also in therapy to work through a lot of our grief.
But really a lot of it was just a lot of enjoyable family time. We did a lot of campfires. We went camping. Went to the park all the time. Just a lot of things that normal families would do. We were just, so happy to not live in that survival mode anymore that you live in when there's a cancer diagnosis, and in particular a very challenging cancer diagnosis. Brain cancer is a very cruel, cruel task master.
Stephanie Daniels:
Oh yeah.
Jess Ronne:
And so just finding joy again in those simple moments that we could share as a new family.
Stephanie Daniels:
I feel like your story is just, and obviously Ryan's too, it's just one of redemption. God redeems what looks unredeemable and not saveable, he does it. And he gives you beauty for ashes.
I'm wondering too, did Ryan and his children, had they had any experience with disability prior to you guys coming together?
Jess Ronne:
Ryan did. It's really interesting how God prepared him. He grew up next to two profoundly disabled individuals and he would babysit. So very familiar. And even the first time he met Lucas, he got right down on the floor and was interacting with Lucas. And Lucas has been primarily non-verbal his whole life, I mean, he has a few words here and there, and he would say dadda for Jason, for his dad. And he met Ryan and he said Dadda and Ryan started to tear up.
But he's always just jumped right in. And again, Ryan met Lucas as that adorable little boy. So, he was five years old. And so, he's just been Dad to Lucas all these years now coming alongside him. And he and I have been through the struggles with Lucas together. But I think having that foundation of that innocence and that adorable little boy really helped Ryan...
Stephanie Daniels:
Mm-hmm.
Jess Ronne:
...grow into what Lucas needed as we later went through those behavioral challenges and aggression with him.
Stephanie Daniels:
Wow. Wow. I'm just so thankful for how God can write a story and give you exactly what you need to help you for, the next season that you're going into.
So, Jess, I see all of our social media comments that come in on our different social channels, and a few weeks ago we received a comment. I'd love to just hear how you would respond to this person.
The writer shared that Joni has really encouraged her when she's felt like she can't hang on. She has three children with health issues that are constant and costly, and now a husband in a wheelchair who can no longer speak. And this woman is saying, you know, ‘I'm completely burnt out.”
She's tired physically, mentally, and emotionally, and she only sees the challenges as getting more complex. I know that that has to be so, so hard when you don't see a way out and you don't see things getting easier. So, I'm wondering what advice or encouragement which you give to this person?
Jess Ronne:
I just know the two biggest game changers for me and my caregiving journey have been one: in reframing my perspective to view caregiving as holy work. For years I viewed it as this annoying, mundane, monotonous task that I had to do that took away from the more important things that I wanted to do: writing books, running a nonprofit, creating documentaries.
When I changed my perspective, and that actually came on the heels of a very, very challenging day with Lucas when he was going through puberty. I had a book deadline I was working on, and Lucas was home sick and he was screaming. He had about 20 diapers that needed to be changed that day, he was not feeling well. And I was muttering under my breath, "I'm so sick of this Lucas, I have to get to the things that I need to get to." And the Holy Spirit whispered, "This is holy work, Jess." This is the holiest work you can do this side of eternity is caring for an individual who cannot care for themselves.
And that just stayed with me. To recognize and to truly, truly realize that I was becoming more Christlike in caring for Lucas. And in fact, if Jesus had been in my house on that day, he would've been caring for Lucas. He would've been changing his diaper. He would've been explaining to him over and over again how to operate his iPad.
And that's what Jesus came to do, was to serve. That was so impactful for me. I had a sign made that says, "this is holy work", and hung it over Lucas's bed, just as a constant, tangible reminder about what was important...
Stephanie Daniels:
Wow.
Jess Ronne:
...this side of eternity. And then the second thing is that community aspect. If you don't have a trusted community that you can honestly go to and say: I am really struggling; I really need somebody to step in and stay with my children, or stay with my husband, or provide a meal, because I'm at my breaking point. I don't think we can do life very well without community. We were made for community. So, it's that twofold component: I think recognizing that what we are doing for our loved ones is holy work...
Stephanie Daniels:
Yeah.
Jess Ronne:
...But then searching for that community, like your life depends on it. And we did, we ended up moving to Tennessee and we were so isolated. My husband ended up in the ER twice with panic attacks that looked like heart attacks. They did a PET scan on him because they were afraid he also had cancer, because we were so stressed out of our minds. We had no community. Lucas was going through puberty. We packed up our life with eight children and we moved back to Michigan because we needed community like oxygen. And it might take a big bold move like that, but to find that community, because it's too hard without it. You need loving people to intervene and help hold your arms up when you get tired.
Stephanie Daniels:
Yes, yes, yes. Absolutely. And you're talking about caregiving as holy work, and that was my next question, what does that mean? And you explained that really beautifully. It made me think of John 3:30-35, but basically that's where he is talking about he must increase, but I must decrease. And I feel like that's what I take caregiving as "holy work" to mean. And so, I'm encouraged as you talk about caregiving. I'm grateful that the Lord gave you that illustration. Do you have guidance for someone who doesn't feel equipped to be a caregiver?
Jess Ronne:
I don't think any of us feel equipped. I often look at myself and I am, not somebody who, if I were the Lord, I would not take Jess Ronne as like this caregiver advocate as I've so strangely become.
Stephanie Daniels:
Hm.
Jess Ronne:
I don't think any of us ever feel equipped. And again, it's that choice that we have to make of either choosing to stay beside the Shepherd or choosing to go our own way. And as long as we stay beside the Shepherd, truly lean into that and his provision for our life, he will sustain us. And I know that can kind of sound like vague and for myself, I would be like, but what do you mean by that? And I guess what I mean by that is every day I have this prayer mat that I start my day on. And I lay on this prayer mat and I invite Father, Son, and Holy Spirit into my life.
Stephanie Daniels:
Yeah.
Jess Ronne:
I surrender my desires. I crucify my will. I'm the queen of ego issues. Ego is feeling like our agendas, what we want to accomplish, is more important than caring for somebody.
Stephanie Daniels:
Yeah.
Jess Ronne:
Crucifying that ego and inviting the Holy Spirit to give me a fresh anointing of power, to give me clarity, to give me courage, to give me calm. And and laying there and feeling saturated in the love of Father Son Holy Spirit, and then getting up and going about my day. And that's manna for the moment for me. And it might look totally different for somebody else. You know, it might be walking or a different ritual that you employ on a daily basis, but I think it's inviting the Shepherd in daily to provide for your needs.
Stephanie Daniels:
Mm-hmm. That's so good. I'm telling you, I love practical tips that people share with me or with our listeners to just say, “Hey, this is what it looks like in my life, and here's ways that you can prioritize crucifying your flesh and getting your mind and heart postured and surrendered to just take on what the Lord has for you for the day.” Thank you for sharing that.
You mentioned the importance of community and building this kind of community largely through the local church is such a big part of what we strive to do here at Joni and Friends. Equipping churches to support families living with disability and welcome and embrace them into the body of Christ. We also offer care groups for families who are navigating disability. So, if you're listening and either wanna help your church become equipped, or you're a parent and need to join a support group, reach out to Joni and Friends at info@joniandfriends.org and we will get you connected with those resources.
So, Jess, caregivers often take on so much and forget about their own needs. Why is it important for caregivers to ask for help?
Jess Ronne:
Because you're no good to anyone if you're dead. It's, I mean, it goes back to that martyr caregiver syndrome where we don't need help, we don't need breaks. And I did that for a really, really long time, about 18 years.
Stephanie Daniels:
Mm-hmm.
Jess Ronne:
And then, we ended up creating a group home for Lucas. And I hit totaled burnout like for three months, could hardly move. Went to bed and watched Netflix because I didn't take care of myself. And I lived in survival mode. And I just kept my head down and I kept fighting for every single thing Lucas needed, or our family needed, or I needed. And my body kept the score.
I was absolutely depleted by the time I finally had some space to take care of myself. And so, you're either gonna take care of yourself or you will become ill, or worse yet, die. And then you are no good to your loved one, and you cannot show up as the best version of yourself if you're not continuously pouring into yourself. And I know that can be really challenging as a caregiver. And for years too I employed these “micro moments of joy” is what I would call them. And it wasn't enough, but it was something...
Stephanie Daniels:
Mm.
Jess Ronne:
...you know, just indulging in a good piece of chocolate or reading a couple of pages from a good book, or taking a long bath and allowing people to help you, or possibly hiring people to help you if you can afford something like that. I know for years we hired our teenagers so that Ryan and I could go on a date night as Lucas aged. Just to get that break, that weekly time of reconnecting with one another. Again, being very vulnerable and honest about what your needs are, and then allowing that community to step in and provide some of those breaks when needed.
Stephanie Daniels:
Yeah, sounds like respite, which we always talk about here at Joni and Friends. And we provide Family Retreats and Marriage Getaways so parents and families can get that break. Every opportunity you can find for respite, whether, like you said, it's paying your other children to watch the kids so you guys can get a date night. I love that advice. That's so good.
You know, I have really enjoyed reading bits and pieces of your book, “Caregiving with Grit and Grace,” and I do plan to get into it more just because that's a season that I'm stepping into with my parents. What inspired you to write it?
Jess Ronne:
My husband. He said for years, you should write a caregiver's devotional.
Stephanie Daniels:
Mm.
Jess Ronne:
I struggle sometimes and I just don't feel equipped, or holy enough. That imposter syndrome that we struggle with. I ended up creating the proposal because my agent loved the idea and we sent it off and the publisher loved the idea and it's really interesting how God worked. I actually ended up writing this book while we were creating a group home for Lucas, and this book really became God downloading this love letter to a grieving mother as I'm preparing to release my son into the care of other people.
And in turn, it became my love letter to caregivers around the world. It's just really cool to see how the Lord used my own book to minister to me during a very hard period as I was processing this transition that I was about to go through, Lucas was about to go through, and our whole family was about to go through.
Stephanie Daniels:
Yeah, yeah. Oh my gosh. And I hope you don't wrestle with that anymore. Wondering if you are equipped and have what it takes to minister because I feel the Spirit as I'm reading what you've written. And I think too, sometimes we wonder, "I have to be the only person that thinks this way." And I think it's healing to know I'm not the only one.
Because like, you have so beautifully penned this in your book. Your raw feelings, and how the Lord showed up and encouraged you in those times. So, I'm here for everything that you have to say. And you've written several books, and so I just wanna put this in here real quick. Where can people find your books and find out more about you and the Lucas Project and all of those things that you're offering?
Jess Ronne:
I'm at JessRonne.com and then the Lucas Project is TheLucasProject.org. And just a little clarification, we provide resources, respite, and recognition for parent caregivers of children with disabilities. So, our focus is on the caregivers more so than the individuals with disabilities, but it's all encompassing really.
Stephanie Daniels:
Yeah.
Jess Ronne:
And then my books are on Amazon, Barnes and Noble, Target, and we are creating a new documentary as well called uncertaindoc.com, which will explore the housing crisis for individuals with disabilities and their families.
Stephanie Daniels:
Oh, wow. I know that's gonna be really interesting and I'm planning to watch that. I would just encourage our listeners to grab whatever you've got because you have a beautiful heart, and I love what you've shared with us today.
As we wrap up our time together, are there any additional words of encouragement that you'd like to share with caregivers or those in the church looking to support caregivers?
Jess Ronne:
I'll start with the church. I've spoken to a lot of churches and I've spoken at a lot of churches. And I think a lot of the leadership in churches, they do want to help, but they're not really sure how to get started because it can be kind of a daunting task to serve families with children who have disabilities.
And I would just really encourage the church to start somewhere. It can be a once-a-month respite day just to give these families a break. I think you'd be shocked to discover one, how many families really do live in your community. I do hear that from a lot of leadership in churches as well. "We don't know of any families." Well, you don't see 'em because the world's not very accessible or accommodating for families like ours...
Stephanie Daniels:
Mm.
Jess Ronne:
... But they exist. And if you provide something, if you create something, they will come and they will come in droves. So just take that first step and try it. Partner with somebody who has been successful in the endeavor. I know Joni and Friends, or 99 balloons is another wonderful organization. Or myself. I'd be happy to chat with anybody. But if we could get more churches really providing some resources for these families, that would be fantastic.
Stephanie Daniels:
Mm-hmm.
Jess Ronne:
And then for caregiving families, just one other thing I've learned in my 19-year journey is, I feel like as caregivers we spend so much time and energy either fixated on the past and the guilt and the shame of how we could have done things differently. Or all these "what if?" questions that live in the future. Like what if my loved one never gets into a residential home? Or what if my loved one doesn't go into remission or does go into remission? Or what if my loved one dies? That we fail to stay present.
And I would just encourage anyone listening, that presence is the only place where joy is found. And presence really is the only place where the Lord is found. And so, to really stop spending so much wasted time and energy on the past or the future, but train yourself to come back to those moments that we have with our loved ones, and you won't ever regret being present in those moments.
Stephanie Daniels:
That is really beautiful advice and I'm so glad you share that, 'cause sometimes I can get plagued with the what ifs and you find yourself worried about the future and that doesn't matter. It's just staying in the present and being present with the Lord, and that's where joy is found. I love that, Jess.
Thank you so much for everything that you have shared with us today. This has just been an encouraging conversation and it has been great to learn a little bit more about you and hear your story.
Jess Ronne:
Yeah. Thank you.
Stephanie Daniels:
We hope this conversation touched your heart today. If it did, consider sharing it with someone who might be encouraged as well. And don’t forget to follow us on your favorite podcasting app so you never miss an episode. See you next week!
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