Navigating Grief with Faith as a Family with Diane Nienas
- Valerie
- 2 days ago
- 15 min read
Diane Nienas talks with BookWorthy about her picture book series Life with Leo, which explores the life and joy of her terminally ill son.
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This transcript has been lightly edited for clarity but reflects the full conversation from the BookWorthy Podcast. Grab a cup of coffee, listen, and read along. This post does contain affiliate links. Thanks for your support.
Valerie - Welcome to Bookworthy, where we talk about the heart behind the books your kids are reading. Today, we're talking with the author of the Living with Leo picture book series, Diane Nienas. Diane is a mother, author, inspirational speaker, and grief coach with a degree in life experience. With two decades of caretaking for terminally ill children, she learned how to navigate through many unforeseen circumstances with grace. Welcome to Bookworthy, Diane.
Diane - Thank you so much for having me. I'm excited to share the background of the stories and where they all came from.
Valerie - I'm excited too. You've kind of been in my circle for a while. I've seen your name several times, and I'm like, I need to get her on here, so I'm glad to have you finally. But to start us off, we need to start with our random question of the week, which is, what is your favorite candle smell?
Random Question of the Week
Diane - I would have to say that my favorite is pumpkin spice, which seems to be, you know, one of those that people either love or hate. It's my favorite, but it's not a favorite of my husband. So it makes it a little challenging to actually burn that here at home.
Valerie -It's the same at our house. I enjoy that smell. My husband does not, or there are certain versions of pumpkin spice that he does, and he doesn't. And so yes, we have thrown out many candles that do not meet the standards. But it's neat how, you know, smells can trigger memories and how they can just bring a sense of home into a space.
Diane - Absolutely. And make you hungry.
Valerie - That too. Or calm a hunger. It's like, let's put on the sugar cookie candle instead of eating the sugar cookie. Too fun. Well, Diane, why don't you tell us a little bit about your book series, Living Life with Leo?
The Inspiration Behind Diane Nineas' Life with Leo Series
Diane -So Living Life with Leo was inspired by our true adventures here at home with my son Leo. At age two, he was diagnosed with a terminal illness called leukodystrophy that eventually had him utilizing a wheelchair. And so the adventures are based on all of the things that we did together as a family to just get out there and live the best life possible through the circumstances that we were given.
Valerie- I love what you've done with the story because you've taken it through different seasons and approached each with just so much joy and enthusiasm that a child who is finding themselves in a wheelchair or a situation where they have limited mobility, that there is still possibility and joy in their place. I love how you do that. Now, how did you kind of come to the place of walking through this hard, hard season and wanting to write children's books about it?
Diane - I actually started blogging when Leo was initially diagnosed. And over the course of the years, keeping family and friends informed, the blog just started to evolve in a really natural, beautiful way. It went from keeping people informed to allowing them to see the adventures that we were actually experiencing. And through that time, I intended to write a memoir. And as I started to write the memoir, I saw that these stories are just so beautiful that, visually, it would be very encouraging and inspiring for young readers to be able to see. And so I was simultaneously actually writing the memoir along with the children's series, which, when I started to think about it, I was writing down all the adventures that we did with Leo, and the list just kept going and going. I'm like, this is like way too big for one book. And so I started to separate them, and it just came so naturally for them to be put into seasons. And they were surprisingly, you know, the same amount, and each kind of season was, you know, possible. And so that was how the seasons evolved. And it just ended up being a really beautiful way to not only let adults come into this world, into this beautiful story, but also let young readers visually see Leo experiencing all these amazing adventures.
Valerie -Joni Eriksson-Tadda is someone who speaks a lot about walking in a hard space and still trusting God in a hard space. And I know that this particular series doesn't have a very strong faith lean to it, but you do put a lot of joy and family into it, which is very welcoming and encourages readers, whether adults reading this to their child or children reading it to explore a little bit more what it means to be in a situation different from other people.
Diane - I was just going to say, you know, like love and friendship come through so, so beautifully in the story. And so even though they are not faith-based, they still extend that core value of friendship and love.
Valerie - And we need that in every walk of life, for certain. Now, Diane, as a mother, how did you make that mental transition from my son is terminally ill, and that is heartbreakingly sad, to let's make this an adventure and a joy?
The Joy and Beauty of Mothering Terminally Ill Children
Diane - Well, we went on an adventure of our own through the course of Leo's life. And he actually started having visions of Jesus at age three, and these incredible conversations. And our family as a whole went through a great deal of hardship. In the course of eight years, I lost seven family members. In the course of seven years, I apologize, we lost eight family members. And through all of that, Leo was so instrumental in the way that he prepared our hearts for this. He definitely was an instrument of God and actually foretold us some things that were going to happen before they happened, including the loss and diagnosis of my other son, Trent. And so I just feel like mentally, we were walking this journey that opened our eyes in the most beautiful way, and along that time, it just became very obvious to me that it was a story of hope in all of that heartache and that it wasn't honestly just meant for us. It was meant to encourage and inspire others and let families know, not only just special needs, but any family, that we have so much more to offer and so much more that we're capable of than we sometimes put these limits on ourselves. And through Leo's journey, we saw that life can really be limitless. And just the way he wanted to be included and the way that we thought outside of the box to make things happen just continued to drive me to want to share.
We were walking this journey that opened our eyes most beautifully, and during that time, it just became very obvious to me that it was a story of hope in all of that heartache and that it wasn't honestly just meant for us.
Valerie - I love that because as a mom, we want to both inspire our kids to live their best life, no matter what situations they've been placed in, and we want good for them. And I love that God was working both in your heart, your family's heart, and Leo's heart to lead. He was the one leading you to this joy and this reminder of both the preciousness of life and the joy we can find in the circumstances we find ourselves in. Now, what do you hope to communicate to kiddos in this book series?
The Goal of Diane Nineas' Living with Leo Series
Diane - So I've had the amazing opportunity of going to schools across my state, my home state of Wisconsin, and being able to share with kids Leo's adventures. So initially, I think they're so amazed by the fact that these are all based on real events. So as we're going through the book and they're seeing what Leo is accomplishing, it's inspiring to them.
To try to maybe take some risks on things that they didn't think they were capable of. So I love that it's encouraging them to step into a space that they might've been hesitant about doing. I also think it's celebrating differences and letting kids see that we might look and do things differently from one another, but they are seeing that Leo is interested and passionate about the same kinds of things that they are too.
And I think it's encouraged friendships that maybe some of the kids wouldn't have initiated. And it's just been so beautiful to see, like, you know, the resilience that Leo had that even though his body was in physical pain, he didn't want to be left behind. And so it was this, this opportunity to show that, you know, we can step into those unknowns and those places that might make us feel a little bit scared.
And so I think it's just got so many rooted lessons in the series because it helps kids, maybe overcome some of their fears. It shows them how to be a good friend, because through the book, you see that many of the activities Leo obviously couldn't do on his own. So it took the cooperation of others, and the way that kids want to step in, and they wanted to be his friend and be his helper, and just have that reward of the joy that would come from that for him. As I said, I'm finding that the schools, a lot of times, have a theme word for each month. And it never surprises me that no matter what their word is, Leo's story relates to it. Because there's just, like I said, so many levels to looking past what we think we see in somebody and truly getting to learn that we really are capable of more than what we sometimes think we are.
Valerie - So true, no matter what our circumstances. We could use that as adults just as much as we want to impart to our kids the ability to step up and out when things are different, to be brave, to engage those who are different than us, and to look at everyone as beautiful creations as those that need love and joy in their own lives too.
Growing an Understanding in Children about Special Needs and Terminally Ill Children
Diane -I love that in the books, it also introduces kids to a lot of adaptive equipment. Because sometimes kids can have a little bit of hesitation or maybe even they're a little bit afraid of, you know, the equipment that's being utilized by somebody. And it could cause them to, you know, keep distance. And so the book, I think, just breaks down some of those barriers to just show that there's so much equipment out there that lends to assist those who have different needs. And I love that it helps kids see how they can do it. They just might need to adapt something a little bit differently.
Valerie - I love that in my own parenting journey, I have a kiddo who has a kind of disability that cannot be seen. And so it's been a process of communicating with teachers and friends and how he operates and using books and tools to help expand that knowledge base, that familiarity with how he operates. And I love that not only you've done that with Leo and what he worked with the apparatuses that he used, I love how children's books have that ability to introduce ideas that can seem very strange and unnerving to young kids, especially when it comes to medical needs and allowing it to be not as scary or overwhelming for kids that may not have these things. Yes, very neat. Well, Diane. You kind of hint a little bit in your blog, as your reason for going into writing a memoir and these books for kids. Did you always want to be an author?
Diane Nineas' Writing Journey
Diane - I think that writing was always embedded in me. I can think back to my childhood, and I was actually one of 15; I'm number 14. And so in a family that large, you can sometimes feel like you're alone or lost, you know, or like in the shuffle as much as you have that many people around you. So I think some of the things that I went through in my childhood, writing and journaling, were something that could just express it. And then in high school, like creative writing classes started to just naturally come to me, and I started writing poetry. And so even though I didn't seek out to become an author, I think it was definitely one of the gifts that were given to me by God, and, you know, the way to express words and use them to help bring hope to others. And so I'm glad that it was a path that was pursued because I'm seeing the effects and the ways that it truly is helping people who need that little light of hope.
Valerie - I love that, and just that, how God has kind of uniquely wired you to communicate truth and hope. I love that you can see that looking back is always a little easier than looking forward. But I just like to see those hints along the way and to see, okay, this is how I process my world. And if it can help someone else, too, then I guess I have to be brave and put it out there, right? Well, Diane, what is your favorite book?
Diane - It's so interesting because I think that over the course of your lifetime, you go through different seasons, and you might have a book that resonates with you and can truly be for that moment. But if I'm completely honest, the Bible is the book that has stayed by my side and held the truth and has, you know, guided me. And so, although I have found so many amazing books to read along the way, it's always the Bible that is the book that I can count on and the one that, whether I'm in a season of joy or sorrow, there's gonna be something relatable in it for me. Truly, just our way to walk our own journey is just laid out for us to see.
I definitely think it's the book that has forever stayed on my nightstand or my bookshelf. So it's the one that has faithfully been through my journey when I came to know God the way that I have.
Valerie - That was definitely at the top of my list. What would be right underneath that one?
Diane Nineas' Favorite Book(s)
Diane - You know, it's funny because I find that I really love books that are based on true stories. And so, you know, whether it's I, I was in a book club, and you know, it always puts you into those situations where you maybe are reading a book that you wouldn't have chosen or selected for yourself. And so, I remember being in the club, and Unbroken was going to be the book that was going to be recommended. And not only was I not sure, but I was so interested in like World War II or like going back to like the history, history was not my strong suit in school. But like, to be honest with you, like the length of it, I was like, man, this is going to be one to conquer.
But I couldn't believe that once I got into it and just really settled, I think, as I said, the fact that it was a true story, it just brings you along. Like, I feel like you end up connecting in such an incredible way when you know it is, again, based on truth. And so all books like that have been ones that I feel like really sit with me, and just kind of it's an overcoming story, right? It's kind of how our life has been, and one that is obviously the same circumstances of sorrow and grief and heartache, but the relatability qualities are there. And so I think that's kind of where I learned to go as far as my book choices.
Valerie - I'm not a big nonfiction reader myself, but when nonfiction is, you know, based on true stories and done well, it is amazing how impactful that can be. And you know, especially like stories like Unbroken or, you know, lots of others, it's just when it's done right, it is so moving to be like, okay, this hardship I'm going through is not the first time that it's happened. We kind of get that in our head that whatever I'm going through is unique and it's only being experienced by me. Like, well, more than likely somebody else has walked that road too, or at least a very similar one. And it's powerful to be able to walk along with somebody else and to say, they got through this. I can do this too. And you've definitely pulled that into living life with Leo and just showing his resilience and his zest and love for life and all of the seasons. So I love how you kind of see it all coming together to find a little day in. What can we expect next from you?
Future Projects and How to Connect with Diane Nineas
Diane - So over the course of the years, I know, you're always, I think you're just always writing, and then like all of a sudden, little ideas come back to you, and you start to see how they can form into something. I, as I had mentioned earlier, did start writing poetry in high school, and I did a lot of writing while I was sitting at the side of Leo's bed. And so what I'm hoping is going to come out into publication next is actually a collection of poetry that takes you through, like a journey of grief from, it's actually right now kind of set up to go through like the colors of grief, kind of starting in that dark space and then eventually going to the white and to the light. And I'm hoping that it'll be like just a nice companion for people that are maybe caregivers or going through any stages of grief on their own, which you know, unfortunately, we can't escape this world without having that and our own lives. And one of the other things that I'm really excited about that actually ties into the Living Life with Leo series is I've been in communication with a gentleman out in LA, and I'm hoping to actually turn this into an animation. And I just see so much potential and so many beautiful things that can come from this one, not only like the messaging in it, but there's a cardinal that's hidden on every page of the Living Life with Leo series. And when I go into schools, it's like truly one of the things that kids love the most is finding the cardinal in the books. And so, the thought of having that come alive and be in movement on an animation just gives me so much joy. Cause I know how excited the kids have been about it.
In addition to learning about Leo, they love knowing more about the story. Like when they see each of these activities play out on the page, they want to know, like, how did it happen? What were the steps that made it possible? So I think being able to go in deeper and bring that story alive is in God's hands at this point. And I just really hope that it becomes fulfilled because I see it being such an incredible, useful animation to encourage kids and truly just bring awareness to how the world of special needs is kind of done daily.
Valerie - I do hope that gets some traction and movement in LA, so that we could see Leo come to life in a new format for certain, because it definitely is a message that is timeless. And I love that, you're stepping into a hard place and helping people find joy and excitement and adventure in those places, because that's when you get to those dark places of grief, you need someone to help lead you through, and I love that you are doing that. Where can people find out more about you and your books, Diane?
Diane - So I do have a website, it is www.dianneinus.com, and all of my books are actually on Amazon, and you can get to that by going to Amazon directly or through my site, and I am also on Instagram, YouTube, and Facebook, trying to get into the LinkedIn world, but that's a little bit of a process. So I'm at the early stages of that. There's definitely through the website would be the best way to get in touch with me, and not only the services, but the products that are available.
Valerie - I'll make sure to have all those links in the show notes so that people can find you easily. Thank you so much for joining me today, Diane.
Diane - Thank you for having me. It was just a joy to speak with you and to truly share the light that Leo brings in the series of Living Life with Leo.
Valerie - I love it, and I hope to see more from you and Leo soon. And thank you for joining Diane and me on this episode of the Bookworthy podcast. Let us know in the comments what your favorite candle smell is. Then help other parents discover Bookworthy by leaving a review and sharing it with friends.
Happy reading!
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