Caring For Caregivers - An Interview With Jess Ronne

Jess Ronne, the author of Blended with Grit and Grace, mom of eight, and a special needs mom reminds us that in all situations God is in control, the importance of mental health for caregivers, and some excellent advice about not borrowing trouble from tomorrow. 

July 20, 2021; Ep. 49

Timestamps & Key Topics:

• 0:01-     August Announcement/Intro
• 1:42-     About Jess Ronne
• 5:58-     Unseen
• 7:55-     God is God, We are Not
• 10:25-   Staying Present
• 13:30-   Sibling Connection
• 17:50-   Spouse Connection
• 20:22-   Moment by Moment
• 22:38-   Resources
• 25:33-   Outro

Episode Links & Resources:

• Coffee With Caregivers Podcast
• Unseen: Caregiver Documentary
• Jess Ronne’s Website
• Jess Ronne on Instagram or Facebook
• The Lucas Project
• Sunlight Burning at Midnight by Jess Ronne
• Blended with Grit and Grace: Just Keep Livin’ When Life is Unexpected

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Transcript

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Carrie M Holt  0:01 
We hope that you have been enjoying Take Heart's Summer Interview Series. Thank you for listening to our podcast and sharing it with others. We are taking your own advice regarding self care, and during the month of August, we will be off so there won't be any new episodes. Go back, listen to some of your favorites, and get excited for season two. It launches September 7. If you're not already an email subscriber, you're going to want to go to our website and subscribe to our email, as we will be releasing some new exciting things in the fall to our email list. Our website is www.takeheartspecialmoms.com

Welcome to Take Heart, where our goal is to give you hope, offer insight, and encouragement so you can flourish in your journey as a special needs mom. Each week Sara, Amy and Carrie will explore a theme, sharing an inspiring story, practical tips and encouragement using their combined experience of over 30 years of parenting. Thank you for joining us today.

Carrie M. Holt 1:42
Hello there. It's Carrie M. Holt today, and my guest today on our Take Heart Summer Interview Series is Jess Ronne. She is an author, speaker and a podcast host at Coffee With Caregivers. She is also the founder and executive director of the Lucas Project, which is a nonprofit dedicated to providing recognition, resources and respite for special needs families. She and her husband, Ryan, live in Tennessee with their eight children, including their son Lucas, who has profound special needs and autism. Her story of beauty from ashes has been shared on the Today Show, Daily Mail and Huffington Post, and is detailed in her memoir entitled Sunlight Burning at Midnight. To follow her ongoing saga, she can be found at www.jessplusthemess.com and also the www.lucasproject.org, which is her nonprofit. She also has a new book coming out in June entitled, Blended with Grit and Grace, and that will release June 15. 

Welcome Jess, we're so glad to have you on our podcast today. I am just really excited to be hosting you and interviewing you, because of all the things that you are doing to bring awareness to caregivers, caregiver burnout and the mental health awareness. So could you tell us just a little bit about yourself, your family, and your special needs journey?

Jess Ronne  3:08  
Sure, and thank you so much for having me. Like you had mentioned, I'm Jess Ronne, also known as Jess Plus the Mess. I'm an author, speaker, and nonprofit founder, podcast host, and documentary producer, and mom of eight. We have children ranging in age from 5 to 18. We also have a 16 year old son, Lucas, who has special needs and profound autism. We recently moved from Tennessee to Michigan to pursue more resources for him, and that's going well so far.

Carrie M Holt  3:44  
That's great. Tell our listeners just a little bit about your journey as a special needs mom, and maybe just a couple of the highs and lows. I feel like when we meet other moms who have children with additional needs, you kind of want to hear their story.

Jess Ronne  4:04  
Well, I'll bring you back to 2004, and that's when I found out that my unborn baby had a stroke in utero. It was a 20-week ultrasound appointment. The doctor said there is very little hope, we suggest that you terminate and try again. My husband Jason and I put the baby in the Lord's hands and just have faith that God would do what he wanted. If it was his will to bring the baby home, then this baby would be healed in heaven. If it was his will that the baby live, then he would equip us with whatever we needed to raise Lucas. He was born on August 12, 2004. He underwent brain surgery at three days old and was discharged from the NICU wwo weeks later. We kind of looked at each other like okay. We went from your baby's going to die to here's your baby. Good luck. That was kind of our initiation into the world of special needs. Honestly, I didn't grieve a lot in the beginning, because I was just so thrilled that my baby was alive. I think a lot of the grieving came for me later on, as Lucas began to go through puberty. That's when we saw a lot of the aggression, and just a lot of his behaviors changing. That's when I realized this is forever, and this is really, really hard. What are we going to do for not only him and his well being, but what are we going to do for ourselves as caregivers, to ensure that we have, collectively, the best outcome as a family.

Carrie M Holt  5:45  
Jess, I know that you have a heart for caregivers, and I know you have a podcast called Coffee with Caregivers. You've been working on a documentary lately called Unseen. Could you tell our listeners about that?

Jess Ronne  5:58  
Yeah, I would love to Unseen is a project near and dear to my heart. Actually it was a dream that started about five years ago as Lucas began to go through puberty and undergo some changes. I'm just recognizing that my own mental health was really taking a deep dive in trying to be his caregiver and also seeing my husband's mental health, as he landed in the ER multiple times, with panic attacks. I was just thinking if there was a way to somehow show the world what we go through as caregivers and sort of peel back the curtain, and just allow the world a peek into our lives. It was just this idea of, kind of a day to day in the life of a caregiver with a child with profound special needs. I reached out to a local filmmaker and his wife, and actually spoke with numerous filmmakers and producers before landing on this couple, who just seemed like the perfect fit. We've now been working on it for about two and a half years. We're just about there. We're actually hoping to have the finished product by this fall.

Carrie M Holt  7:11  
That sounds wonderful, I think you will be reflecting just so many of our stories that the world needs to know. I love how you talked about mental health. So our mission here at Take Heart is for listeners to know hope, joy and connection. In light of that mission and your passion for helping caregivers, what is one way that your faith has grown as a result of your journey? How have you changed? How is this documentary helping you to be a better caregiver?

Jess Ronne  7:55  
I'll start with the faith question. I think what has really solidified in my heart and soul in the past couple of years is this resounding theme of I am God and you are not. That's what I keep hearing from the Lord. I see this thread play out in my life over and over again with everything I've been through. I am God and you are not, so trust, trust the path that I have you on? All does seem to unravel in a way that brings glory to His name. 

Carrie M Holt  8:31  
That's hard, isn't it? 

Jess Ronne  8:33  
It is really hard to give up that control as a mom as a caregiver. What was your second question about the documentary?

Carrie M Holt  8:43  
Just how has the documentary helped you and your faith journey? What have you seen or maybe just learning through developing this documentary?

Jess Ronne  8:57  
I think all of humanity is connected through stories. I've always been a writer, so that's been my medium of choice. Then using this other creative medium to tell stories, and just seeing that we're not alone in this thing called caregiving. There's connections all over the world with other caregivers. Every time I receive a message saying, thank you so much for seeing me. It just warms my heart.

Carrie M Holt  9:31  
Yeah, and I think that is one of our core longings, right to be seen.  I'm so thankful that God sees us. When he met, I think it was Abraham's wife in the desert that she was seen. I can't remember her name right now. Hagar. When he saw Hagar, he said, I am the God who sees you. What is one thing about Lucas that gives you joy? What's one thing that you love about him or one thing about your life as a special needs mom, that gives you joy, either way?

Jess Ronne  10:25  
I think Lucas has taught me how to be present and stay present. He's not bogged down by all the political crap in our world today, or what we see on the news every day and all the Facebook drama. Lucas just exudes joy, living in each and every present moment. That usually involves food, typically, cake, singing music, hanging out with his brother, Josh. He's taught me to slow down, stay present, stay in this moment. I also look at him often and just think, to be that close to the Heavenly Father. I don't know, I've even questioned whether or not he has sinned, because I don't think there's a malicious bone in his body. To have that kind of purity, to walk with the Father, like Enoch walked with the Father. I think, often the typical people of the world, we think, Oh, these poor people with disabilities or special needs or extra needs, or whatever. I often think that the Heavenly Father looks at them and says, "No, you have no idea. They walk and talk with me, and they are in perfect communion with me. It's you all typical people who are missing out on so much of that purity, and communion, because you're so bogged down by the heaviness of this world." We chase after the stuff of the world.  Lucas and those like him, don't chase after that stuff. In some aspects, you know, I envy him in that regard.

Carrie M Holt  12:22  
Yeah, for sure. I know, with my son, Toby, just the level of suffering that he's been through, I know that he just has this unique connection with the Lord like you said. He's experienced the presence of God in a way that I have not. I've experienced his presence very much just with everything we've gone through with him, but obviously, he's the one actually experiencing all the surgeries and the things that he's gone through. So I know that Lucas has seven siblings. Am I saying that right? I know a lot of times we talk about special needs siblings, and that balance and mom guilt and things like that. Tell me just a little bit about the connection that Lucas has with his sibling. How do you feel like your other kids are better because they have Lucas as a brother and a part of your family?

Jess Ronne  13:30  
Well, Lucas has a closer connection with some of his siblings than others. He's extremely close to Josh, they're buds, and we actually just permanently moved Josh here to Michigan, because we saw so much anxiety in Lucas. Now having his brother back here, that anxiety has totally chilled out. He just missed his brother. There are a couple like Maya, my 16 year old daughter, she'll sit and sing with them. She has a very pure heart, and Lucas responds really well to her. I've been asked this question quite a few times. Don't you feel like your other kids have gotten shortchanged in the world because so much of your time and energy has to go into Lucas? I guess my response is, no, I don't. Having Lucas as a brother has brought out the best in them. It's taught them patience and mercy and kindness and to accept other people graciously and to extend grace. These are all attributes any parent would want seen in their children. All we ever get is praise for other kids about how kind they are, how they reached out to this child or that child and tried to befriend them. I believe so much of that comes from Lucas being their brother. Yes, a lot of our time and attention does have to go into loop Guess but the world doesn't revolve around each of us individually either. I think if children can start to learn that from a young age, the world does not revolve around you, we're all in this together this great big, grand thing called humanity. We all have to try to lift each other's burdens. These are values that they understand and implement already in their very young lives. I have nothing but extreme gratitude and pride when I see how my kids are going forth into the world, and extending kindness towards other people.

Carrie M Holt  15:43  
Yeah. I was listening to one of your podcast episodes when you were interviewing Jolene Philo. She was talking about growing up with her dad having MS or multiple sclerosis. It really hit me that she talked about how she never really knew anything different. She didn't have resentment and things like that. I realized one of the faults that I have made in my own life. Part of it is, so my special needs son is our third and his brothers are 22 months older, and then three and a half years older. They were really young when Toby came along, and then he spent two months in the hospital fighting for his life. I did too much, almost protecting of them, and not enough of including them in his care. Some of it was needed. They needed to be protected. I mean, Garrett had his second birthday in the hospital, obviously, he's not going to handle, you know, anything at two. I think you're right, that the kids are siblings, for the most part. It's a little bit different with Toby because they just...Toby talks and so he can give it back, arguing, and things like that. They do have a different level of kindness and connection and, and a servant's heart, I think because of their brother. I'm trying to even now still do a better job of just teaching them more connection with Toby. One of the things I think that we struggle with as special needs parents and families is connecting in the community connecting, with our spouse, connecting with other families. What is one piece of encouragement that you would give our listeners on the topic of connection or a piece of advice in that area?

Jess Ronne  17:52  
I can only speak for myself about what has worked for me. Friendships are very, very important, but I've made it a top priority to stay connected to my husband, knowing that marriages can often fall by the wayside very, very quickly with eight children, and special needs involved. We have just been very intentional about staying connected, and that includes up until now when we're living in two states, but praying together every morning, and we've still been doing this even over FaceTime. We used to walk together every morning, just the two of us. Then just being really intentional about a date night. I think when you have a solid partnership, and especially a solid partnership with somebody, that you're married, it just makes this caregiving journey so much easier. I'm even noticing that now with him in Michigan, or I'm sorry, him in Tennessee and me in Michigan. I don't have that person at the end of the day, even if it's been a really rough day, that person who's like, yeah, I get it. I'm in this with you. We're in this together honey type of thing. I think we probably came into our marriage, understanding that because we had lost our first spouses. So we've always just been extremely intentional about maintaining a really firm foundation with our family. That, for us, begins with being intentional about spending time together.

Carrie M Holt  19:29  
Yeah, and I love those practical ideas that you gave too. Those are so important. My husband, I've been married for almost 21 years. Even now, because you have teenagers, I have teenagers, and it can be very easy to let the relationship just kind of go on auto autopilot almost. I love that. Even though you guys are separated just for right now that you're praying together over FaceTime. That is, that is really awesome. If you could go back to the beginning of your journey, I know Lucas is 16,  what advice would you give to yourself? What would you tell yourself?

Jess Ronne  20:22  
Take it moment by moment, day by day, hour by hour. Sometimes I think as caregivers, it's so easy to get overwhelmed with the big picture, and going to the worst case scenario of everything. I know when Lucas was first born, I was imagining myself like back in the hospital constantly with surgeries and shunt revisions. In reality, he's only had three surgeries his entire life. So for 16 years if I could have just given that worry over to the Lord, and let it play out moment by moment, there is grace in everything that you have to go through. So rather than borrowing worry from years down the road, just trying to stay present. Again, I think it always comes back to trying to stay present, and not running too far ahead of the situation.

Carrie M Holt  21:17 
Yeah, that's really good. That's interesting that you say that, because I'm actually trying to teach Toby that right now because I don't know why he just has this. Well, he's facing a really big surgery in a couple of weeks, but he's been fixating on that, which is normal. I'm trying to allow him to grieve and to have his feelings and all of that, but I keep talking to him about let's focus on today. Like, what are we going to do together today? We got to do your school, we got to do this. That's so, so good. I would love for you to tell our listeners a little bit about your first book, and a little bit about your podcast. I started reading your book Sunlight Burning at Midnight. I haven't gotten very far into it because as you know, it's hard to sit down and read.

Jess Ronne  22:08  
What? I bust through a book a day. I'm on the same book from like, two months ago. It's a really good book, too. But yeah.,

Carrie M Holt  22:20  
I was really drawn in just in the very beginning by your story. I would just love our listeners to know about all the resources that you have for them and encouragement that you can share through your resources that you have. So will you tell us about them?

Jess Ronne  22:38 
Yeah, Sunlight Burning at Midnight is the beginning of my story. It's when I first received the diagnosis for Lucas. Then it walks through my first husband's cancer journey for three years, and then losing him and my remarriage. I have a second book that is releasing June 15, so about a month from now called Blended With Grit and Grace, and that is a continuation of the story. Blending our two families, having an eighth and final child together and living in rural America until rural America just didn't work for us anymore. We moved towards resources for Lucas. Then Coffee With Caregivers is my podcast, and that's just where I talk vulnerably and honestly with caregivers, like yourself about what their child's diagnosis is, how it affects their family, how it affects them as caregivers. I think it's just really important to share stories. I think we glean a lot of information from one another, a lot of encouragement. Again, it's just that principle of "I see you". You see me. We're not alone in this thing. Then the Lucas project is a nonprofit that I founded in 2017. Our mission is to provide recognition and respite for caregivers. By the time this airs, we should have a completely revamped website. It's gorgeous. I saw a peek of it two days ago, and it is amazing. We're gonna have so many tangible ways that people can reach out to caregivers and say "I see you" type of thing. Then the recognition arm of our mission includes the documentary that we had touched on earlier and then the podcast as well.

Carrie M Holt  24:29  
Yeah, I love that. I think all of these are going to help our listeners and help so many caregivers who need to be seen so well. Thank you so much for being here today on Take Heart. I know you can be found on Instagram and Facebook, can you tell us what your handles are?

Jess Ronne  24:53  
Oh yeah, I'm on Facebook. www.jessplusthemess.com is my website and then @jessplusthemess on Facebook and Instagram. Then the nonprofit is www.lucasproject.org, and then the documentary is www.caregiverdoc.com.

Carrie M Holt  25:09  
All right, great. Thank you for sharing those. I'm sure we will talk again. So thank you for being here today. 

Jess Ronne  25:15  
Yeah. Thank you so much. 

Carrie M Holt  25:33  
Thank you for joining us this week on Take Heart. If you're enjoying our podcast, could you do us a favor and leave a review on whatever platform that you're using to listen? You can follow us on Instagram or Facebook @takeheartspecialmoms. If you have any questions or comments, or would like to share your story with us, please follow the links in our show notes, we love hearing from our listeners. Be sure to listen in next Tuesday. as Sara continues our Take Heart Summer Interview Series with a special guest.