Take Heart

Unexpected Gifts Through Difficulties: An Interview With Jillian Benfield

• Amy J Brown, Carrie Holt and Sara Clime • Season 3 • Episode 123

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Sara interviews author and former journalist/news anchor, Jillian Benfield as she shares her unexpected journey of having a child with Down Syndrome and the societal pressure to "overcome" grief quickly. Jillian emphasizes the importance of allowing yourself to fully grieve and unlearn negative beliefs about worth and disability. She also discusses her book, "The Gift of the Unexpected," which talks about laying down her thoughts and leaning into what God was showing her.  

Ep. 123; April 11, 2023

Key Moments:
[3:39] Jillian’s diagnosis story
[10:25] Undergoing grief, not overcoming it
[13:17] Life after diagnosis is transformative
[15:27] Worth attached to my resume
[22:12] How to handle the seasons when there is no bright side
[26:22] Asking ‘why’ is a worthwhile question

Resources:

Jillian Benfield’s Website
The Gift of the Unexpected: Discovering Who You Were Meant to Be When Life Goes Off Plan
Working Through Weariness: 6 Tools to Reclaim Goodness 
5 Spiritual Comforts for Parents of Kids with Disabilities
Goodreads Giveaway
Join our Book Launch Team

If you enjoyed the show:

Jillian Benfield 
I just remember my back, breaking out in fire and the words: I can't be a special needs mom, I can't be a special needs mom running again and again in my head like a skipping CD. Because of course, I couldn't because that also was not a part of my plan.

Sara Clime
Welcome to Take Heart where our goal is to offer encouragement and give hope and insight, so you can flourish in your journey as a special needs mom. As we explore monthly themes, share inspiring stories and practical tips, our desire is for you to feel connected and encouraged. There are links to anything we mentioned in this episode show notes.

Sara Clime
Do you ever have that one author, speaker or person you follow on social media who seems to understand what you're going through? You read or listen to whatever they have to write or say, and you feel yourself nodding along or saying aloud, "Yes, that's it, she gets it." Well, that's exactly how I feel about today's guest author Jillian Benfield. Jillian is a former journalist and news anchor. She holds a broadcast journalism degree from the University of Georgia. As a freelance writer, her essays about living an unexpected life have appeared on sites such as Today, Good Morning America, Yahoo News, and ABC News. Jillian regularly advocates for the full inclusion of people with disabilities in her writings, in her community, and as a part of the National Down Syndrome Congress's National Down Syndrome Advocacy Coalition. Jillian, her husband, Andy, and their three children live on Florida's Space Coast. Learn more at www.jillianbenfield.com. 

Well, this is your second time with this. Welcome back. We are so excited and thank you for being here again with us.

Jillian Benfield
I am honored to be a repeat guest. Thank you.

Sara Clime
It's so exciting this time you have a new book.

Jillian Benfield  
I do I do. It's been out for a month at this point when we're talking and it's been a whirlwind.

Sara Clime  
Oh, and I have the benefit of having read the book. It is wonderful. I highly recommend it again. We'll have a link to this book in the show notes. Congratulations on it, what an accomplishment. I know it is a labor of love. It is an amazing book, by the way, I thoroughly enjoyed reading it. As I said, I would highly recommend it to any of you listening. I know some of our listeners are not parents or caregivers of those disabilities, but trust me, you will get as much out of this book. It truly is a gift of the unexpected, and it applies to anyone who walks this side of heaven. The official title is: The Gift of the Unexpected: Discovering Who You Were Meant To Be When Life Goes Off Plan. As I said, you do not have to be raising or caring for those with disabilities to understand that life goes off plan. I believe that this is applicable to anyone.

Jillian Benfield
I agree. I say that it's for anyone whose life has taken an unexpected turn, and is looking to find meaning through it, not find the meaning of why it happened because that's a very different question, but finding meaning through it. If you are willing to take that journey, this is a book for you.

Sara Clime
Absolutely. Well said! I love that. Speaking about that, what was the unexpected moment that inspired this book, and how did that moment shape the course of your life?

Jillian Benfield 
I'll take you back to 2013 when I just had my first child. I was a news anchor and reporter. My husband had just graduated dental school, and we had the Air Force pay for his dental school. It was our time to pay the airforce back for footing his dental tuition bill. I had to leave my news anchor, reporter job in Augusta, Georgia. We went to Las Vegas, Nevada. I thought that at the end of that very short assignment, it was an 11-month assignment I would go back to TV news. Then I get a phone call on May 8, 2014. It was my husband and he said we're going to Holloman Air Force Base. Andy, where is that? He said, "Alamogordo, New Mexico." 

I don't know if you know this, but there's not even a Target in Alamogordo, New Mexico, let alone a TV news station, and I was devastated. I spent the whole day crying. At the end of the day, I had this whisper in my head that was telling me to take a pregnancy test. We were not trying; our daughter had just turned one year old. This was not in the cards, but this whisper wouldn't go away. Somehow an old pregnancy test made its way across the country with us in the last move, and I took it and it was positive. I thought, okay, God, okay, if you want me to stay at home, mom, I get it. I thought I had it all figured out. Then we moved to Alamogordo, a couple of months later, and it was time for my 20-week ultrasound. I noticed that the tech is taking a really long time, and finally, she gets her measurements. She flips on the lights and walks out of the room, and a nurse walks in, and she says, Well, everything must look great because the doctor is not here. As soon as she said those words, he walked in. He explained to us that there were several markers on the ultrasound that indicated that our child had a higher chance of having a trisomy. I said, "Well, what does that mean?" He said, "It means that your child has a higher chance of having a condition like Down Syndrome." I just remember my back, breaking out on fire, and the words, I can't be a special needs mom, I can't be a special needs mom running again and again in my head like a skipping CD. Because of course, I couldn't, that also was not a part of my plan. Eight days later, we're waiting for blood results. Eight days later, I get another call from my husband. He says, "The doctor called, it's not good. I'm coming home." I remember my heavy 21-week pregnant body falling to the kitchen floor and saying the words, "Oh no, oh no, oh no, this doesn't feel real, this doesn't feel real." Finally, he walked in the door, and I could tell he was going to be sick. I started unbuttoning his very intense military uniform, and he did get sick. Once he was done, I remember him laying his head on my chest, and his hot tears rolling down my shirt. We had just turned 27 years old, and we were in shock that this happened to us. We knew the test came back positive for something life-altering, and possibly fatal, but we didn't know what, and we had to go into the doctor's office to get the official results. When he walks in the room, he says, "Well, it's not good news. Your child has a 99.9% chance of having Downs Syndrome, and it's normally at times like these people want to talk about their options." I said, "What options? He said, "Well, option one is you terminate the pregnancy." I said, "What's option two?" He said, "Option two is you continue your pregnancy with a high-risk doctor. Don't worry, don't worry, you don't have to be a hero. If you decide not to terminate the pregnancy, you can have the baby here and we'll keep him comfortable. But we don't have to do anything drastic to save his life." In other words, we could have our baby to keep our consciences clean, but we could let him die of natural causes. The doctor believed that our son would have a life that was not worth living. I grieved as if a death had taken place. It would take me many weeks, months and possibly years to realize that I had much more in common with the doctor than I wanted to admit. 

That's a lot of what this book is about. It's about the unlearning that can take place if you choose to do the work after the unexpected hits and the learning and eventually the transformation that can come with the unexpected.

Carrie M Holt  
Before we continue our podcast today, here's something you should know. Hey, friends, we are so excited to announce our new book that's coming on May 9th. The Other Side of Special: Navigating The Messy Emotional Joy-Filled Life of a Special Needs Mom, and we need your help to spread the word. You can join our launch team and get extra bonuses and fun prizes. For information, go to our website, www.takeheartspecialmoms.com, and you can sign up for that. We'll have the link in the show notes. Today through April 24, Goodreads has partnered with our publisher for a book giveaway. The link to that is also in our show notes. We hope that you enjoy this wonderful resource for special needs moms. Now let's get back to the podcast.

Sara Clime
It's all too common that we immediately with a life-changing diagnosis can relate to that. We relate to the worst-case scenarios. We relate to almost life being over. We talk about grief, so much on this podcast; we talk about it a lot. It's an important part of the journey as parents and your son, Anderson's diagnosis led to months of grief. Can you share with us how you proceeded with that grief? What would you say to those who may feel stuck in that grief right now>

Jillian Benfield  10:25  
What I would say is that what I was unknowingly doing while going through this grief was undergoing it. I think there's a big push in Western society and in church culture that also wants us to overcome our grief. Meaning there's this short amount of time you are allotted to feel pain. Your goal as a human person, and as a Christian is to get to the other end of that short timeline as quickly as possible.  Another word for overcome is to suppress, and that is what we are expected to do. My grief was so heavy, it was all-consuming. I had no choice but to sit under its weight. When you Google image, the word undergo, what you will see is a patient about to undergo surgery. That's what I am suggesting to readers that they do, is that undergoing the unexpected is a lot like that. It requires seeking out help, digging into the deep, dark places that are paining you, and then pursuing healing afterward. This book is not a how-to undergo the unexpected, but it's what I learned from undergoing the unexpected.  There was a lot of unlearning that had to happen because my ideas about worth, success, and disability were so convoluted. I had such a bad worldview without knowing it. I had such a bad view of myself without knowing it. I had such a bad view of disability without knowing it. 

I would say to that person right now, who is grieving to really go all the way through that grief and ask yourself" Here's what undergoing looks like. I'm mad at God. Why am I mad at God? What do I think God owes me? Where do I see that? Then leaning into that and thinking going through, okay, what does God actually promise? That's what undergoing looks like. It requires your time. It requires effort; it requires you to really sit with that grief

Sara Clime 
It's transformative, and that's why you talk about that in this book. You use a lot of terms, which I love. I think that it helps those that are going through those moments of the unexpected. You use terms like becoming an unbecoming, and learning and unlearning. You realize that that is so true. I think at the beginning, you say there's the moment before and then there's after, and it is so true. My husband and I say there was life before diagnosis and life after. We say it that way because I think so many times, people think life stops at diagnosis and that the life before was so much better. It's not. It's just different. It's actually different in a good way. It's transformative. It's so much different. You have to go through it. I appreciate how you said that you really have to sit and say, "Okay, I am angry at God." I went through a very big part of that. One of the things that I tell other caregivers and even people, in general, is I went through a time I did not grow closer to God until I actually said (I call it my quintessential Christian temper tantrum), "I'm done. I am so angry at you." I had to learn that the dreams that I had were never really what was planned for me to begin with. I had to grieve that. I had to set with it anyway, it was still a grieving process. Jillian, we're talking about grief, and you mentioned something about your worth. As you underwent the unexpected, what were some of the beliefs about your worth, your grief, and God that you needed to deconstruct about your life, that you needed to focus on?

Jillian Benfield 
I really believed at the time without knowing it, that my worth was attached to my resume. I thought success, American success, a very Americanized version of success, meant worth, I thought that equaled worth. What that looked like was, well, if I have a child outside of typical boundaries, who might not be able to achieve the things that I and my husband were able to achieve, like college degrees, or getting married and starting a family, or acquiring material wealth, how can he be a productive person? How can he live a worthy life? That's hard to admit now because what I learned was that worth and success are two very different things. That success in God's eyes is not always what success is in the world's eyes. Our worth is not something we can ever, ever earn. Our worth has already been given to us. If you have breath in your lungs right now, you have a worthy life. There's nothing you can do to add to your worth. It just is. That took a lot of time to come to that conclusion.

Sara Clime 
I love that because I think if somebody would say your worth is tied to your success, or if somebody would ask me about any of my loved ones. If they would say my other son, my husband, my mother, my sister, or any of my cousins, is their worth tied to their success? Absolutely not. Their worth is their kindness, their generosity, and their love. I could list all of my family's attributes. For some reason, when you were so distraught at that moment, your mind goes to all of these things. As you said, it's what we're taught, what society will bring forth. I love how you say that you have to deconstruct that. It's about deconstructing those societal norms that you are brought to. There's a term right now too, it's ableism. I think we shy away from that because we don't want to tie that to ourselves. We don't want to say that we are ableists, especially if we are parents or caregivers of children with disabilities because we're thinking, well, we're parents; of course, we're not. But, you have to confront that to be able to deconstruct it and to be able to move past it. I love the vulnerability that you have in this book. As you said, it's not a how-to, but it is your journey on it. I think your being so vulnerable in it and so transparent in it; it helps others to move through it and to say, "I'm not alone. I'm not the only one." As Christians, you mentioned in your book that at one point, and I'm paraphrasing, as Christians, we move through it very quickly. We don't want to stay in the negative too long. We don't want to camp out in the negative; let's move through it very quickly. That's not what that's about it. It's okay to be upset. It's okay to be sad for a while, and it's okay to grieve, and however long that takes is however long it takes.

Jillian Benfield  
The sixth chapter in the book is called Becoming Real. I think some Christian books might have ended on the birth of our son, and then everything was all better. Right? There was this moment of peace with him when he was born. I predicted that he would be born on New Year's Eve, even though his due date was two weeks later. I told my husband I just feel like God's going show us a miracle on the last day of the worst year of our lives. He did. Anderson was born. I still remember how intently he stared at me; it felt like he stared straight through my soul. It was a miracle. Then he was rushed away to the NICU. Those harsher parts of his diagnosis were starting to unfold. After he was born, it took eight hours a day just to feed him, not including the pumping included. lived in what I called the aftershock. I live on the Space Coast in Florida, and I grew up here. When a space shuttle returns to earth, it creates a sonic boom,and it's called an aftershock. I was living in one big sonic boom. The shuttle had landed. I was rolling along the landing strip, but I was in a new town and didn't know anyone. Life was dark. It was. There was this miracle that happened and this peace that happened, yet darkness was still present. 

What I talk about in that chapter becoming real is what I realized was that this message of positivity that's pushed on Christianity is not Christian. When you look at the Psalms, the Psalms teach us how to be in a relationship with God. More than 50% of those are laments. It's lamenting, being in relationship with God, then we get to that transformative hope. We don't get there by skipping to it. We get there by going all the way through it.

Sara Clime 
Jillian, something that you said is you were talking about the dark seasons, the difficult seasons. How can we handle those unexpected seasons that don't have a bright side, when we don't see the brightness or the light?

Jillian Benfield 
I talk in the book about how I've been through other things. Obviously, I feel very differently about Downs Syndrome today than I did when we first received that diagnosis. I've been through other things that I cannot tell you were good. My youngest son was born with a plethora of medical issues and required fetal intervention surgery. We were in and out of the hospital for the first two years of his life. I can't tell you that something like that was good. What I would encourage you to remember is that we have a God of resurrection. The resurrection is not just about what happens after this life; the resurrection is something that happens in and out, over and over again in this life. God may not change your circumstances the way that you want them to be changed, but he can bring forth new things from those circumstances. New things can come; new life can come from what is dead. If nothing else comes out of it, other than the fact that you become new, then there's still hope because you are important. Your life matters. Who you are here matters. If you are listening to this conversation and saying, "Yeah, but my I don't have a silver lining right now." I would say, "Look all around you. 

I write a lot about nature in this book because we were moving around the country throughout the first eight years of Anderson's life and were exposed to all of these natural wonders. One of them was in New Mexico, and these white sands were there. Those white sands in Alamogordo, New Mexico, was a huge lake that covered that area of New Mexico. When the lake dried up, it left behind this white gypsum that's still there today. My point in saying that is yes, something was lost, but something new came from it. I think that's the promise of God that I see not only through the life of Jesus, not only throughout the Bible, but I see it all around us. There are products of death and resurrection all around us, and resurrection is available to us here now.

Sara Clime
Right. So, well said. Thank you so much. That's so important. I think it's important to acknowledge that there is still something lost, but something beautiful can come out of it, and that there's still something that can be beautiful witnessed from that loss. Yes, it doesn't replace what's lost, and it doesn't negate what's lost. Too often the focus is: Why? Why me? Why us? Why this? We start to internalize: What's wrong? Why, what did I do? In speaking of which, I know you have touched on them, but what are some benefits of asking why in those unexpected moments?

Jillian Benfield
There's a huge pushback in Christian culture against asking why. There's a huge pushback on that. But I actually think why is a worthwhile question because I think why helps us to discover more about our Creator. When we are hungry for why, we grow closer to the One who created us. I will say I feel like I pursued certainty for so long. I thought if I could have the answers to the why questions that I would somehow feel complete, and that never happened. I say in the book that I was searching for the God of certainty, and I ended up finding the God of surprise.

Sara Clime
Oh, I loved that line. I don't want to interrupt, but I loved that line. I circled it. I highlighted it. I even stopped my husband. I made him pause the TV. I kept interrupting him,  by the way, whenever he was watching. He said, "What now?" You have to read this line; it was beautiful. That was such a beautiful moment. It is so true.

Jillian Benfield 
Because God turned out not to work the way that I thought he would

Sara Clime 
We underestimate him. I tell my children all the time I need to stop underestimating God.

Jillian Benfield
He cannot fit into the boxes we create. There's a benefit to searching for that certainty for a while because it allows you to develop your own systematic theology. Then it comes up to a point where you have to hold it loosely, You have to know that you are never going to have the corner on God's truth, and then you can move forward. There is a point and I don't know how to tell you how to know it is time. I can tell you that there will come a time. Hopefully, you will be awakened to it where it is, I'm never going to fully know. You can move on with the beauty of the mystery that is the divine in this life that we get to live.

Sara Clime
I love that. I asked why a lot. I drilled down; I kept trying to drill down. I was trying to prove if what I was brought up to believe was false or not. I was very angry for quite a while. It did. It helped me actually prove that what I believed was true. There was a time when I thought, okay, fine. My “why me?” became, okay, why me? What is it that you're trying to teach me? This question changed. It wasn't why anymore, but what do you want me to do? It changed a little bit. It finally was. I'm not going to have all the answers; I realized there was there was the truth, and I was finally able to accept it. It was just beautifully said. Thank you. You do a lot of advocacy, switching gears. When we advocate for our children, a lot of times, the focus is on us, especially when we're writing books. Unfortunately, we're center stage because Anderson won't be here on the podcast with us. What do you wish others knew about him? What do you wish others knew about your family?

Jillian Benfield
I wish that others knew that Anderson and us, as a family, are not living less-than lives. Our lives are different. Anderson's life in particular, is different. But it is not less than. Our lives alongside him are different, but it is not less than. I would say about Anderson, I think, in particular, with kids with his type of disability or similar disabilities, that people really think that he was sent here to teach us something. That's not the case. It really dehumanizes him. He is not an angel sent from above. He is a fully human person who is worthy and beautiful, just as he is. That's what I would want them to know.

Sara Clime 
We've said it before, time and time again, on this podcast: we're not inspirations. My son is not an inspiration. We were in the airport one time, and my son, I was scolding him. This lady looked at me and was so put off because he was in a wheelchair. I looked at him like; he was a brat in a wheelchair. He's still disobedient in a wheelchair. I don't understand.

Jillian Benfield 
We were on a cruise recently. I yelled at Anderson because he was running away. I got this look from somebody that I was yelling at him. I thought, he's running away. 

Sara Clime
We've joked around about it so many times. Any of the listeners that have listened to us for a while, you're like, yes, we know. We're not inspirations. Stop calling me an inspiration. They're miracles in progress. No, they're not.

Jillian Benfield
I had this one. podcaster, I could tell she really wanted me to say something beautiful about Anderson. I love Anderson. He's a delight. I can tell you all these good things, but what I really want you to know is that he's a full-blooded human person. People should not put him on a pedestal. He is just like the rest of us. Yes, he has some differences, but his worth is just like the rest of ours. He wants what most of us want, which is to belong, right? that's what I want you to know about Anderson.

Sara Clime
I don't want to spoil the book. I could probably sit here for hours and talk about the book chapter by chapter. One of the things I do want to point out for everybody is its journaling. Anybody who's listened to us before knows that Amy, Carrie, and I all love to journal. Whenever I opened up your book and I saw that each chapter has journaling questions, I was so giddy. Yes, more journaling questions, and I love it. As I read it, I was journaling. My husband looked over and I was, yep, journaling questions. I completely geeked out on that. I loved it. And I love the way that your book is set up beautifully, the flow of it,. It was very well written, and the journaling questions really helped you dig deep into it, personally.

Jillian Benfield   
Thank you for saying that, because I'm actually not a huge journaler because I probably write so frequently online. I don't also keep a journal. The journaling questions were actually pretty hard for me to come up with. For the listener, I'll let you know they're who was I, then? Who am I now? Who do I want to become in regard to each lesson of the chapter? I'm just really thankful to hear that those helped you process the lesson and go back in your own story.

Sara Clime 
We just finished our book and our book will come out shortly. We've written this time and time and time again. I've written my story I've spoken. With public speaking and everything. I told the story; I've written the story. I've done it so many times. At first, I was like, yes, journal questions. Then I thought, Ah, I don't want to discuss the story again. But the way that they were written about each chapter, it helps you focus on individual parts of it. It helps you focus on those parts of yourself that you haven't drilled down enough. Have I really looked at that part of myself, and have I looked at that part of my child or my family, or was my walk with God enough? It was really well done. Your book truly is a gif; to share it with others and to be so open and honest, it's a brave thing to do. It will help other moms and caregivers understand that they're not alone in this and that we can grow from it. They, too, can find that gift in the unexpected moments in our lives. Thank you for being here.

Again, the title of her book is The Gift of the Unexpected: Discovering Who You Were Meant to be When Life Goes Off Plan. Let's show some love to Jillian and like and share this episode. Her words today will be a blessing to so many other moms and caregivers. You can find Jillian on Instagram @Jillianbenfieldblog. The links will all be in the show notes. She also has a couple of wonderful free downloads: Working Through Weariness, Six Tools to Reclaim Goodness, and Five Spiritual Comforts for Parents of Kids With Disabilities (also in the show notes). Be sure you are following takeheartspecialmoms.com for resources, tips, and inspiration. You can also find us@takeheartspecialmoms on Instagram and Facebook. We'd love it when y'all connect with us, so jump into our DMS or email us at takeheartspecialmoms@gmail.com.