Raising a Special Needs Child

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Welcome to the Naked Marriage Podcast. We are Dave and Ashley Willis. On this podcast, we address the truth about sex, intimacy and lifelong love. It's gonna be a great episode because Ashley's holding my hand right here at the start. You're watching on YouTube. You can see. Oh, it's beautiful. You could be a hand model if you ever want to switch careers. Hand modeling. I can totally see that. We're glad you guys are here for this episode. This is such a special one. This is a bonus episode in more ways than one because we for a long time have wanted to feature a coup who have a powerful testimony about raising a special needs child and the unique challenges and blessings that can bring to a family and to a marriage. This couple's story is remarkable in that they're not only raising a special needs child, but Ashley's going to explain kind of the rest of their story. But whatever situation you're in, listen to this conversation. This is going to encourage you and challenge you in your faith and in your marriage.

It absolutely will. This couple's names, they're Ryan and Jess Roan and you guys, their story, I don't want to give too much, but basically they both each lost their spouse in a very tragic way and met each other in the midst of that grief. And, and through that, you know, they, they have eight kids all together and one of those, those kids is, is severely a special needs child. And so he has some very, he has a lot of needs and he has, he needs 24 hour care. And you know how they talk about that and, and their heart is really for caretakers. You know, I mean, they, they just have such a heart for reaching out to people like you who are listening, who are also raising special needs children. And they have a charity that helps with this. They are actually in the midst of doing a documentary about this and, and she also has an amazing book that we're going to tell you about, so make sure you listen till the very end. They are a wealth of knowledge. They are also a breath of fresh air. So let's dive into today's conversation. Well, welcome Jess and Ryan to the podcast. You guys are amazing people. And I, as I mentioned in the beginning, you know, I've gotten to know Jess a little bit because I actually interviewed her in a Facebook live. But I'm so excited for our listeners here on the Naked Marriage podcast to get to know you all because you have such an amazing story testimony, and you can speak on so many different things that we. We haven't really been able to dive into into on this podcast. So I'd love to start out the conversation by you guys just sharing your. A little bit of your story, kind of how you met your family dynamic. If you want to start there, it's all yours, babe.

Well, first of all, thank you so much for having us. And yeah, we. We met in 2010 after the deaths of our first spouses. My late husband, Jason, battled brain cancer for three years, and Ryan's late wife, Casey battled brain cancer for a couple of months. And we both blogged from our state. I was in Michigan, he was in Oklahoma. And we just blogged as a therapeutic measure, as a way to keep the masses and the loops as to what was going on in our lives. And when they passed away, a stranger who followed both of our blogs, she lives in Pennsylvania, actually reached out to me, said, hey, there's this widower in Oklahoma. He's not doing very well. I think you could be a source of encouragement to him, and the rest is history. I went to his blog, saw this grieving widower who had three young children. I had four young children, including a child with severe and profound special needs, my son Lucas. And we started emailing and talking on the phone, and we were married less than a year later, he moved to Michigan. We adopted each other's kids. A few years after that, we decided to pursue the simple life in rural Tennessee, which we discovered very quickly is not very simple. Had our eighth and final child together. That was just something we really wanted to experience together. And a couple years into that, well, how long were we there? About six, seven years.

Six years?

Yeah, years.

Almost seven.

Completely renovated this huge house on 30 acres. About killed us. And as Lucas, my son, continued to age and go through puberty, his aggression started to become really intense. And we realized that we couldn't live this life of isolation anymore. So we moved towards Nashville, kind of thinking that would give us the resources and support we needed. And sadly, we discovered that Tennessee just is not the state to live in for support and resources anywhere. So just recently, about a year ago, I think the pandemic brought everything to the surface for us, and we realized that we needed to move closer to friends and family who actually did love and care about us and would step into some of these gaps in our life. And we're in the process of moving to Michigan. I'm in Michigan. Ryan's still in Tennessee, wrapping up some loose ends there. And that's our plan. We're building an accessible home for our son Lucas, and living in a temporary house right now.

Wow, man. I mean, that's.

Yeah, you guys are just heroes to see what you've come through and how you faced it together and how you've leaned on the Lord, leaned on each other, and really, like, I can't imagine just kind of all the different dynamics. There's a documentary being made about your family right now that's kind of focusing on, you know, specifically the dynamic of taking care of Lucas and life with a severe special needs child. So tell us a little bit about that project, kind of how that came to be and what you hope. The message of what you hope that documentary is going to do for folks and the awareness of it.

Mm.

Am I gonna have to refer back to you again, honey? Maybe this is her baby. Honestly, the awareness, I mean, aspect of it. She's tackled this from the very beginning, and she won't give up on it.

Yeah. That's amazing.

Share, please.

Yes.

Do you want more detail? Well, this started as a dream probably three or four years ago, again, going back to rural Tennessee. And Ryan ended up in ER a couple of times with panic attacks that resembled heart attacks. And I was having a lot of ptsd, just going back to, you know, the times when I was caring for a husband who had cancer and thinking, oh, my goodness, Lord, did you plop me out here in the middle of nowhere with eight kids now and a husband who, you know, is having all these health issues? And that's where the idea started. Just I thought, you know, we're so isolated and exhausted. And that launched the Lucas Project, actually our nonprofit, which provides recognition and respite to caregivers. But then in thinking along the recognition part, it was like, how can we bring society into our struggles in a way that will hopefully spur them to action somehow? And I'm a writer by nature, but I thought maybe there's another medium out there that would be either more effective or just as effective. And this idea of a documentary came to mind. If we could go into these homes of these caregivers, particularly the ones who don't get out much like our family, because our son does have profound autism and profound special needs. And what that entails for us is he's non verbal, he's incontinent, he needs assistance in every aspect of his life. So as he's aged and become bigger and more aggressive, we do find ourselves more and more isolated because it's just so difficult to bring him anywhere and to engage in society. So after years of prayer and finally moving towards Nashville, I started to present this idea to a couple filmmakers who I found online. And nothing was a good fit until the filmmaker that we're working with now and his wife, who is the producer and I'm the associate producer, we just started brainstorming and they loved the idea and they were. They were a godsend. They are the perfect fit for this project. And it's just going to be like a episode by episode type of thing. The first episode is exploring our family's journey through special needs and how we kind of continue to chase this unicorn idea of resources and support for this child, this one child, and continue to uproot our lives just to try to make his life easier and in turn, our lives easier because the child is only as well as the caregivers. And if our mental health isn't well and isn't doing very well, the child isn't going to be doing very well. So that's the whole goal, is to just peel back that curtain and then hopefully society at large will begin to see these families and we'll start to see more resources and support come from a project like this.

Well, I cannot wait for that. Go ahead, Ryan, what were you going to say?

Yeah, I think it's good to point out that the focus on this particular documentary is about the caregiver themselves. Like, a lot of times, there's a lot of information out there for kids. There is a lot of resources for the kids and opportunities for kids. But caregivers get left behind and we become martyrs often. So I think this is just bringing awareness to that, to that battle that we deal with on a daily basis. It's 24 hours a day, seven days a week. There are no breaks.

Right.

So that's just. I think that's the key to that, is just bringing people into our homes, like Jess said, and somehow getting the churches involved in coming to us as caregivers rather than trying to open the door to us to come to them.

Right.

You know, I love that. And I think that. I love that you both have such a heart for the caregivers, because it is. It's something, you know, the special needs child, obviously, is going through their own battle, but it affects the entire family, and it affects a marriage for sure. And, you know, I was telling you guys before we actually hopped on this episode how excited I am to have you all here, because Dave and I have been praying for the right couple to come and speak on this because it needs to be for special needs. You know, families who are facing special needs challenges because they're raising a child with special needs only. You know what that's really like, because, like you said, you live that every day. And we do hear from so many couples where this is the thing that is really hard on their marriage because of the time that it takes because of the financial burden, not having enough resources, because of the different phases their child is going through, and it causing, you know, it causing an upset in the family because they. The child maybe can't speak for themselves. So the parents and the brothers and sisters don't know what they need. And it can be so hard. And, you know, I cannot wait for this documentary. I believe you said it's called unseen. Correct. Unseen. And I love that. And that's the perfect title. And so we'll definitely. We're gonna put information in the show notes about that so you guys can be following along. But I'd love for you both to speak on specifically as it relates to your marriage, how you keep a strong marriage with everything you've been facing, but specifically with raising Lucas and having to make these moves, you know, how do you guys make sure that you make time for each other?

I'll go ahead.

Your voice is probably weak anyway.

She's facing a cold, guys. But she sounds crazy.

That's right.

Yeah. I think there's a couple keys to that. I think prioritizing our marriage has always been number one to us and communication. You hear that about everything. And I think that's something I've really struggled with because I'm quiet, keep to myself. And it got so bad that, like she said, I was having panic attacks because I just wasn't letting go of some of that stuff that was building up inside of me. But I think what we've done is, you know, you do have to sacrifice somewhere in order to make your marriage a priority. So I think it's an ongoing process. But I think for us, we've just said, you're my wife. You're first, then everything else comes second. And sometimes I have to schedule that. Work is sometimes second. Kids are sometimes second. It just depends on what's going on in that moment. But, you know, we surround ourselves with God. I know a lot of people say you put God first, and I view that a little bit differently. I think God is in everything, so we make sure that he is part of everything. So we try to pray every morning as often as we can. That doesn't always happen. We're far from perfect, and we try to stick together no matter what. So we take walks together on a daily basis. We wind down together every night. Our kids have to go to bed earlier, probably than most because we want some downtime for ourselves, just the two of us. And that's a challenge, especially with special needs, because he needs constant care. So in order to prioritize that, we might have to hire help or we might have to get our kids to pitch in and say, hey, go sit with Luke for a little bit so that mom and I can eat dinner together, you know, or whatever that might be. We're going to go out on a date. And that's a regular thing for us. We make that a priority almost every week, and we've even done that remotely while she's in Michigan and I'm in Tennessee. We might have a zoom meeting, or we might FaceTime, or just we find a way. We pray together over the phone. I mean, it's just, again, like I said, is prioritizing that and making that first in our lives.

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I love that. I mean, I really hope that people were listening because that's huge, you know, making it a priority and doing whatever it takes, you know, because you're not, I think so many times it's so easy for us to be like, well, we can't do this because of whatever right people are.

We all can make excuses. You know, we. We all can make excuses like, I can't prioritize my marriage because of this, or we can't do a date night because of this. But to listen to your story, it really does. It removes the ability to make excuses for so many people because you guys are making that time a priority, as you should, and as is so important. And it's a lifeline to make your marriage a priority. To have those date nights, to have those conversations, to have that time together at the end of the day, to go on those walks. And you guys have had to be so intentional. And that's such an encouragement for all of us in whatever season of life, because no matter how busy we might be, no matter what unique challenges we might be facing in our marriage, there are always solutions to make some time together a priority. Even though there are very real challenges and what Jess and Ryan are facing, it's a 24, seven, very real challenge. I mean, just raising eight kids, period. I mean, that alone, like, I just, you know, my hat is off to you that alone when they're all healthy is, man, that is a full time around the clock job. But when one of those kids does need 247 care the way that Lucas does, and, you know, the unique strain that could put on a couple. So I just applaud how you guys are continuing to make, you know, make time for each other a priority. What. What would be some of your encouragement? Because I know that we've got people listening that have been waiting for this episode where we are giving awareness and shining light on those. Those couples and on those families where they are. They are caring for a special needs child and the. The very unique struggles that come with that. What would be your encouragement to that caregiver, to that couple who are listening, who feel unseen, they feel exhausted, they feel just completely worn out. What's the hope or maybe the practical tips that you would share with couples like that?

Give one and then I'll let you take the rest. I think that the best gift that you can give your kids and Jess agrees with this, is to have a good marriage for them, to see us communicate, to see them for all of our kids to see us happy and enjoying each other and laughing together and spending time together and making each other a priority. And I know a lot of people think you gotta keep your kids first in line, and it's just not the case. You do your marriage first, everything else will follow.

All right.

It's all yours, babe.

I love it.

I would agree. I think having loved and lost both of us, you know, we knew from the very beginning that our marriage was going to be a priority. And we always had this vision, and I think having a vision for your marriage, where I always saw my whole family gathered around this big table with all of the kids grown, including Lucas, enjoying good food and just enjoying each other's company. And I think with keeping that vision in place, we've prioritized our marriage. And I know our kids oftentimes think you and dad always do things together. You know, they'll say to Ryan, you know, you'll always pick mom's side or whatever. But at the end of the day, we do that because we want to give them the gift of an intact family at the end of all of this. And we might not be their best friends while they're growing up, but I do want to be their best friends as adults and enjoy their company. So. And I would say just for caregivers, too, I think the whole premise of everything I do in writing and documentary work and nonprofit work comes down to being honest and vulnerable. And I think as long as caregivers continue to paint this picture, that our lives are so blessed and there is blessing. Absolutely, there's blessing in raising Lucas. But there are so many hardships, too. And unless we start to speak about some of the difficulties that our lives entail, people aren't going to know. So churches aren't going to know. Small groups aren't going to know. Society at large isn't going to know. If we just stay isolated and exhausted within our own little bubbles, and we don't ever speak out or tell people. So I hope that my life and the work that I do is giving people permission to say, I love my child. I would do anything for my child. But this is really hard, and I really need some help. And I hope society and churches start to gather around these families. And I guess I would say too, just stay present or try to stay present. I'm not the greatest at that, but I think when you're a caregiver, it's really easy to look down the road and start to get overwhelmed at everything that the caring for Your child is. Is going to take from you mentally, physically, you know, all of it. And I'll just give an example. When Lucas was born, I just saw myself in the hospital constantly because everybody told me, oh, kids with shunts have shunt malfunctions all the time. So be prepared. Sometimes these kids have, you know, five, six, seven shunt malfunctions a year. So I'm envisioning my entire life being spent in the hospital. Lucas is now 16 years old. He's landed in the hospital, what, three times, honey.

And that was mostly this last year, right?

So I'm obsessing about this whole idea that never even happened. And if I would have just stayed present and just, you know, taken life moment by moment, day by day, I wouldn't have had to waste so much energy worrying about what the future was going to look like for him. So I think that's. That's my two cents.

You know, I love that. Like, not. Not obsessing on the worst case scenario. And I do think, you know, you mentioned PTSD earlier because, I mean, here you've lost, you. You had lost a spouse to brain cancer. And then there's trauma in that. And then also dealing with some, you know, then. Then thinking too, about what's gonna happen with Lucas. And then when you, you know, Ryan, were going through your health battle too, and then. And then the trauma that that brings. Cause what if, you know, this is the same thing's happening. I'm losing my spouse. You know, I feel like it's those things that can keep you up at night, and then you're not resting. And then when you don't rest, well, you know, you're, You're. You're not at your best either. And so, you know, I love that. I think it definitely causes you to just really have to depend on the Lord just for your strength. I mean, have you guys seen that in your own journey? Just sometimes having to take it, you know, minute by minute with some of these situations you've had to face?

I think that's what walking is for us, like step by step. It's why we walk every day. Just. It's a metaphor for our life, our marriage, our family.

Yeah, I think praying every day, too, makes a big difference, because often you're much more vulnerable when you're speaking to God. And when you're with your spouse and you're praying about the things that are going on, that's a form of communication that your spouse understands. I understand what you're dealing with too, and I know, and now you know what I'm dealing with because our prayers are very similar. But often something that I'm dealing with comes out in a prayer that may not necessarily come out when I'm just talking to Jess about it.

Yeah, that's so true. We do, we make ourselves so, you know, we humble ourselves before the Lord when we're praying, but also before our spouse. You know, it's this, there is this element of humility and just vulnerability that we have that maybe in just like you said, just normal conversation we wouldn't share. I love that. You know, I want to talk about. You mentioned, Jess, how there's blessing in raising a special needs child. And we definitely. I love how you all are shining light on the struggle because again, I think that so many times we tell ourselves, oh, we just don't want to, we don't want to let people know what a struggle it is. We're just going to focus on the good. And so I think there is a balance there and being real about the struggle because you said people who raising a special needs child don't know if you don't tell them. But I also would love to hear what a blessing, you know, that Lucas has been to you and your kids. You know, I want to say this. I was just on your Facebook, Jess plus the mess. You guys definitely follow her on Facebook. And I saw your recent post about your son and you call him Josh is Cool. Is that right? Is that.

That's what Josh told Luke to call him.

Oh, okay. And I smiled.

Yeah. Luke is primarily non verbal, but he'll like, he'll mimic things. So Josh taught Luke that his name is Josh is Cool.

I love that. But I saw where you said that, you know, with this move, some of you are in Tennessee and some of you are in Michigan and how Lucas was struggling a little bit emotionally. And you, I hope I'm saying this right, so correct me if I'm wrong, but then you were able to bring Josh is Cool in and you have these pictures. You guys, please go to their Facebook page. But it's showing these brothers just. It's the sweetest relationship. And I just, it touched my heart, you know, not even knowing these kids. And I just thought, man, it's such a window into like, what, how your kids, I know, are learning things that are just so sweet. And I would just love for you to speak on that. And I love that you share that so openly on your page.

Well, in terms of our children, I've been asked the question a time or Two, you know, do you think your kids have been shortchanged because Luke is their brother and he requires so much. And my answer is always, no, I don't. As a parent, I see things in my kids that I'm extremely proud of, you know, grace and empathy and patience and kindness and seeing other people. And they know that the world doesn't revolve around them. And honestly, there are enough narcissistic children in this world today that I will gladly raise my kids a different way. Kids who aren't obsessed with the latest TikTok video or what the celebrities are saying, but who can set aside their screens and help their brother or sit with their brother because that brings some comfort. So in terms of like how my kids are shortchanged or not shortchanged, I think the things that they're gleaning because Luke is their brother so far outweigh what the rest of the children are learning, you know, in our normal modern day culture here. So that's just speaking for our kids. I don't know, honey. Can you say anything differently about our kids?

Yeah, I'm sure they feel like they're missing out on something. Don't all kids? I mean, I know I did. They're missing out on something, but they're gaining so much more. Like you said, the compassion that they're going to feel toward other kids and the lack of judgment that they're going to have this understanding that, you know, you can't give to somebody. They have to learn. So for them to experience Lucas at his most vulnerable, and they see he is vulnerable, he can't do anything without us. And I think they realize that. They would love to not have to share time, I'm sure, with him because he gets a lot of our time, but what kid wouldn't? I mean, every kid wants mom and dad to be there all the time, but I think this is good for them. We have very independent children because of this for one reason. That's not the only reason they're independent. But we raise our children that way. But the Josh is cool thing, it touches my heart. I mean, I'm usually the only one that can calm Lucas. And that's always been the case since I've known him. And to have Josh step in and really want to. He wants to help Luke, he wants to understand him. And when he sits down with Luke, Luke changes. Luke looks at Josh like, you get it, you understand what I need. So just stay here. And sometimes it gets a little aggressive where he's like, stay here because you're not leaving. But Josh embraces it, and he tries to work with him on his Alphabet, his numbers, and he sings to him, and Luke just starts swinging like, who's the singer? I forget now.

Oh, Stevie Wonder. Is it Stevie Wonder?

Stevie Wonder?

Yes.

I totally agree.

Doing that all the time. As soon as Josh starts singing, that's what he does. So they have such a great relationship.

That is beautiful. I mean, that is. That's every parent's dream, to see, you know, your siblings. Siblings. And to see your children with a heart of compassion like that. And, man, you guys are. You guys are doing it right.

I want to mention one thing. I could tell you. You're already gonna wrap up. Is that okay? Really quick, sweetie. Okay, So I just don't want. I don't want readers to miss out on this, but Jess actually has a book that is getting ready to come out, and it is called Blessed Blended with Grit and Grace. Because, you know, both of you are a blended family, and so there's definitely unique challenges that come with that. And you guys speak on so much in this book. You guys, the way that Jess writes is just beautiful. Like, it's one of those books where you stop and you're like, ooh, I need to stop and think about that for a minute. But then the next page, she'll just be so, like, the honest candor. Like, you just have such a great way of writing. You're very much a gifted writer. And I know after hearing this interview, they're gonna wanna hear more of your story and also your wisdom on blending also with raising special needs. There's just so much in there that I know all of us can learn. Even if you're not. Even if you're not a blended family, it's an amazing book to read. And so I just would love for you, if you want to kind of, as we prepare to close, speak on that a little bit.

Jess, on the book.

On the book, yes.

Sorry. The story begins with my first memoir, Sunlight Burning at Midnight. And that's when I received the diagnosis with Lucas, and that's my late husband's cancer journey. And then blended with Grit and Grace is a continuation of our story. It's after I met Meet Ryan, and we moved to rural Tennessee. And I would say that that book primarily takes place in our six, seven years out on our rural homestead, and the lessons we learned and the joys and the trials and the ups and the downs and everything in between. But, yeah, like you had mentioned, there are some heavy parts. And then I Try to lighten the mood a little bit with some humor. Sarcasm is my love language. So what's that?

Good thing you married me, right?

You get my sarcasm. That's great. And yeah, I just actually signed a contract for a third book over the weekend.

Congratulations.

Thank you. I guess I wasn't going to take a break anytime soon.

Right. You don't have enough to do.

That's right. All that free time.

Exactly. And this will be a marriage book, and that will be releasing February 2023.

Well, that's awesome. We look forward to that book, too.

Yeah, definitely.

I guess Amazon's the best place for them to go. Pre order that.

Yes, it is awesome.

We'll put that in the show notes, too. Go ahead, sweetie. I'm so sorry. I just wanted to make sure.

No, yeah, that's definitely. We are all about sharing those kind of powerful resources. So as we wrap up, where else can people connect with you right now? If they want to learn more about you, if they want to connect with what you're doing and they want to learn where they can watch this upcoming documentary, where should people go?

Well, Ryan is nowhere.

I'm right here if you want to.

That's right, he's here.

If you want to connect with Ryan, you'll have to reach out to. I'm@JessPlusThemas.com and then just plus the mess on Instagram and Facebook. Our nonprofit is the lucasproject.org and the documentary is caregiverdoc.com.

Love it. Well, again, thank you guys so much for taking time out of your busy schedule while you guys are in the midst of a move and in two different places, but we just, you know, I. One day, Jess, I know we talked about this in our phone conversation. We want to meet with you guys. We want to sit down and have dinner when everything settles a little bit for you guys in Michigan. So I'm looking forward to that day sometime in the future. But we just. We're sending you guys lots of prayer and blessing over this move, and we just. We are grateful for you all and all the work that you do.

Well, thank you so much for having us. And yes, we will take you up on that dinner offer anytime, and things.

Won'T ever slow down for us.

Well, true. I know.

We'll prioritize you.

We'll take a moment. Yeah.

We'll take a moment. Yeah. It would be our honor and pleasure. But thank you so much for making time for this and for those who've watched this and listened to this, thank you for being part of this journey. This conversation. Check out those links and resources that Jess just shared about to stay connected with this family's incredible journey. And our prayers, like Ashley said, are with you guys in the days ahead. We know God's got great things in store for you, so thank you again.

Thanks guys.

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