Seeing Beauty In The Hard: An Interview with Jillian Benfield

Our guest, Jillian Benfield shares with us how we can find beauty in the midst of the hard, her tips for advocating, and encouragement for moms starting out on this journey.

June 21, 2022; Ep. 91

Timestamps & Key Topics:

• 0:00-    Intro
• 1:23-    Meet Jillian Benfield
• 3:37-    Doing This Again
• 6:43-    Hold Two Together
• 13:20-  Advocating
• 17:57-  IEP Tips
• 24:53-  Not The Only Life
• 28:31-  What It Means to Trust
• 30:27-  Resources
• 33:06-  Outro    

Episode Links & Resources:

• Jillian’s website, Facebook, and Instagram
• Jillian’s Free E-book: Disability Advocacy 101
• The Spirituality of the Psalms Walter Brueggmann 
• The Holy Longing Ronald Rolheiser 
• A Day In Our Shoes  
• Wrightslaw Courses
• Paula Kluth Courses

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• Find Sara at www.saraclime.com or on Instagram @saraclime

Transcript

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Amy J. Brown  0:00  
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 and share inspiring stories and practical tips, our desire is to continue to serve you and new listeners. Carrie, Sara, and I want to thank you for joining us today.

Hi, this is Amy Brown, and welcome to another interview in our summer series. Today we have Jillian Benfield. She is a former journalist turned author, wife, and mom of three. Her middle child surprised their family when he came into the world rocking an extra chromosome also known as Down's Syndrome. You may have seen Jillian's writings featured on Good Morning America and Today, and she has a book releasing in the spring of 2023 with Bethany House. When Jillian is not writing or transporting kids, she and her family are likely at their hometown beach on Florida's Space Coast. She invites you to grab her free ebooks. Five Spiritual Comforts For Parents of Kids With Disabilities and Disability Advocacy 101: A Parent's Guide on her blog, which is www.jillianbenfield.com. To read more of Julian's writings, follow her on Facebook at Jillian Benfield, or on Instagram @jillianbenfieldblog. Thank you so much, Jillian, for being here today. I would love for you to start by telling our listeners just a little bit about yourself and your story.

Jillian Benfield  2:28  
I'm a former TV journalist. My husband is an orthodontist, but he used the United States military to pay for dental school. Once he graduated dental school, I left my TV career, and we moved to Las Vegas, Nevada. That was just supposed to be a one-year assignment, and I thought I would go back to the news after that one-year assignment, but then we got stationed in Alamogordo, New Mexico, where there is not even a Target, let alone a t.v. station. That's where we found out that our second child, and I was 20 weeks pregnant at the time, was going to be born with Down's  Syndrome. That just kind of changed everything. I think that's a good jumping-off point.

Amy J. Brown  3:25  
That's your second child. How many children do you have? 

Jillian Benfield  3:27  
I have three. I have Violet, who is eight, Anderson is seven, and my youngest, Preston, is four.

Amy J. Brown  3:34  
Okay, so you have your hands full. 

Jillian Benfield  3:39  
Our children run the gamut of different disabilities and diagnoses. Our last child was born with multiple medical diagnoses as well, so he does not have a disability. But we've kind of run the gamut of being medical parents and parents of a child with a disability.

Amy J. Brown  3:57  
Yeah. That's like being thrown into the deep end of the pool when you have something like that happen. Our experience is a little bit different. We have adopted kids who ended up having a lot of mental health and attachment disorders, but we have this long path of figuring out what was going on. When you get that diagnosis, I know that's an overwhelming moment in your motherhood journey, because it's not what you thought was gonna happen. With your third child, when did you find out about his issues?

Jillian Benfield  4:36  
We also found out that with him in utero as well. I think it was week 14, they didn't find a heartbeat, and then they went in and there was just fluid all over everything. Yeah, he ended up with kidney issues and what have you, but he's doing well now, but it was rough for several years of his life.

Amy J. Brown  4:59  
I'm sure you thought, again?

Jillian Benfield  5:02  
We both did. It just felt like, what is wrong with us? The things that we worked through after the first diagnosis questions like: Is God punishing us? Did we do something wrong? All of those questions that we had worked through kind of came flooding back when we got the other diagnosis. So yeah, that feeling of why us again? I'm familiar with that.

Amy J. Brown  5:37  
Right, we have three kids that have some form of attachment. After doing it once, and then again, you do think what am I doing wrong here? What is going on here? I think one of the things I appreciate about your writing as I was reading this week (you have a free ebook, which we will link all your info in show notes) is about working through weariness, and tools to redeem goodness. One of the things I think you do well, in your writing that I've noticed is you hold that tension between lament and joy, or the beauty and the difficult. I don't think that's a message we get. We either get this extreme that is the complaining, everything's horrible, or we get the Christian (and I don't mean this disrespectfully to our faith), but sometimes in the Christian world, it's like buck up, God's got it all, and be happy. I would love to hear you talk a little bit about how you came to hold those two things together, and maybe even some of the tools that help you do that.

Jillian Benfield  6:43  
Yeah, I came to hold those two together out of necessity, really, I mean, not only did I have two kids, I'm thinking about the hardest part of my life, which was when our youngest was a baby and Anderson with his Down Syndrome diagnoses and other diagnoses that are attached to that (Down Syndrome.) He was having health issues as well. I had read some things about holding that tension, living in that tension of saying, "Yes, this is really hard AND, not but,  but and, I can see that my life has so much goodness in it, too. I think it was really out of necessity, and also doing deep reading and working through it. The book that I'm writing right now, isn't coming out until spring 2023. with Bethany House is really about that. There's this pressure as Christians that we have to be the PR people for Jesus, that we have to skip over the heart and get to the positive as quickly as possible. That's just not real life. That's not the life that was shown to us in the Bible in any way, shape, or form. One of the most helpful books that I read about this was (actually I took some seminary courses during this time, mostly for my own benefit. I just love learning.) One of the books I read was the Spirituality of The Psalms, by a famous Old Testament scholar. The book was really about like how the Psalms teach us how to be in a relationship with God. If you look at the Psalms, more than 50% of them are lament. Being in a relationship with God is not just saying thank you all the time. It's crying out to Him. I think personally, Jesus cried out on the cross quoting the Psalms, "My God, my God, why have you forsaken me." That's quoting. He's quoting there because he's showing us how to live, how to suffer, how how to be in relationship with this God. Just today, normal month stuff. So today, both of my boys have strep throat. They both feel fine, which is great, but I have a deadline next week. What was supposed to be a three-day work week for me, I will now have one day to work. I'm the default parent. My husband has a job where he can't just leave. It's on me if things come up, and it's hard being the default parent, and I'm grateful for it. Today, the interruptions are hard, but I will figure it out. It's okay that this is hard, and we're going to make the most of what we can have this day. I'm very thankful we live in Florida now permanently. I was able to take them to the beach where I knew we would be secluded, so they couldn't get anyone else sick. We're just going to live the most that we can today. That's kind of the mindset that I try (not always successful at it), but try to keep in mind, especially when it comes to parenting kids with different disabilities and diagnoses, throughout this journey alongside them.

Amy J. Brown  10:37  
I love that. I love what you say because I'm actually in grad school myself for spiritual formation. I was just reading yesterday, and I'm don't remember the book. I'll have to find it and link it. It talks about Jesus sweating blood in the garden, and that's where transformation happens. Nobody wants to do that. Transformation and real joy, not that we brush away the hard. That's where the transformation happens. I agree with you. I feel like I hear moms say, "Yeah, it's really hard, but. I love how you express that because we do need to be able to say this is hard, but there's also so much beauty. Years ago, someone said to me, "I can't wait to see what God's gonna do with your daughter." I literally laid on my bed and cried my eyes out. I looked at the person nicely, like, oh, yeah. Then the minute I got home, I cried because I thought, what has God done? At that moment, I couldn't think of anything. I do know that he was okay with me feeling that way. As I continued on, thinking about how God has changed me, I think what you're saying is we can see so much beauty in the midst of the hard. It doesn't have to be an either-or kind of situation.

Jillian Benfield  11:54  
Absolutely. I think that's one of the biggest things that I've learned throughout the last several years parenting a child with a disability and another child with a medical diagnosis. Life is really not either/or, hardly ever. the time. That's what my book that's coming out in 2023 is about. It's about not trying to overcome the unexpected but to undergo it because when you undergo it, that's where the transformation happens. Just how you were saying. Undergoing it looks different ways for different people. When we sit with the hard and ask what it can teach us (that process can take years, which it did for me), we become different people. Sometimes our circumstances are not good. You don't have to classify every circumstance as good. You don't have to grab for silver linings or whatever, but I do think that even in the hardest circumstances, good can come from that. Most of the time, that goodness is not external goodness that just comes down from above, sometimes it can be, but most of the time that goodness is a change from within. How things end up changing and transforming us into who God dreamed we would one day be.

Amy J. Brown  13:20  
Right? That's such a great point. It's not that everything's better, and all of a sudden, everything works out. I think that's it. I'm excited about your book. That's a much-needed message that I think we need to hear especially as special needs moms. I would love also to switch a little bit and talk about inclusion and advocacy because I know that you write about that. I think advocacy can be really intimidating for a new parent with a new diagnosis. I will say that my first IEP meeting was the most difficult. I don't know what I was thinking when I went in there, but I just thought, oh, it's gonna be great. They're just gonna give me everything I need. I go into a room with all these people sitting on the other side of me, all these professionals are rambling off all these acronyms, and I have no clue what they are. I left that meeting crying because I wasn't prepared. I didn't know what my rights were and what to ask for. I was reading something that you wrote on your blog, and I'm going to read this. I'm pretty sure this is right after you have advocated at school. If that's the wrong circumstance, you can correct me, but this is what you said. I think it was so lovely. You said, "I spoke about what I believe to be true. I didn't mince words. Do you know who else did that? The One I follow. He restored the marginalized. He was radically inclusive. He preached humility and gentleness. But he did not hold back when speaking against those who played a part in systems that oppressed. Systematic oppression is what I saw unfolding in front of me, the school discriminating against my child and others like him because of their differences, and wanting to segregate him based on his weaknesses, instead of valuing him for his many strengths."  When I read that, I thought that is Jesus' way of advocating. I thought I would love to hear you talk about that a little bit more.

Jillian Benfield  15:15  
Yeah, you know, I think I was really fortunate. I don't really know, I can't tell you what I read when I was pregnant with Anderson, but whatever I did read, it was about school inclusion, and it lit a fire under me to see that there was a different way. Then I had been shown how people with disabilities can live their lives. I think I was so devastated originally by Anderson's diagnosis because I had never seen kids with disabilities in my classroom growing up, right?  They were on the separate side. They were on the sad side, really. When I was able to see through one article, and then went down a rabbit hole of many others, that no, it doesn't have to be this way, that changed everything for me. When you really look at Jesus and his healings, oftentimes he was healing people, because they were discriminated against in their current state. He was restoring people who were outcasts because of their disabilities. He was bringing them into the centerfold. He was making it so they could go to the temple because they wouldn't have been allowed to. I think my point in saying that is, that I believe that an inclusive world is the way of Jesus. I believe that is "thy kingdom come." I think that when the world is restored, one day, it will be an inclusive world, so why would we not fight? Why would we fight for anything less than that?

Amy J. Brown  17:15  
I love that. As you walked into that initial experience, you said it lit a fire underneath you. What were those first experiences? I'm sure like I said, nobody's just going to roll out the red carpet, as we've learned. What did you learn in those lessons like how to best advocate? Because I think that intimidates a lot of moms. I remember somebody telling me, you gotta go in there and give them all you got. You have to be this adversarial person, which is not my norm. So I immediately I was like if I'm not like, shaking my fist, I'm not advocating? I think it's important to know your style of personality. What were those first experiences and what did you learn in those experiences?

Jillian Benfield  17:57 
That was actually our third IEP meeting. You'll hear this a lot from parents that the IEP meetings while they're in preschool (and not all parents, don't get me wrong), but the IEP meetings and preschool might go fine. In that meeting, going from preschool to kindergarten can be a little trickier. I read one article, and this is a resource for your readers. I can't remember the author's name of the blog, but it's called A Day In Our Shoes. She tells on her site about how the kindergarten IEP might be just one of the hardest or one of the most important IEPs that your child has because it's really setting the path for them. It is way harder to fight for inclusion later on in your child's school career than it is earlier on. What happened in this meeting was, thankfully, I had gotten a heads up from the teacher that they were trying to put Andersen in this test classroom where he would be included part of the day and segregated part of the day. If he did well, in kindergarten, he would move on to first grade. First of all, that's not legal. It happens. It's not supposed to be that way. I knew that because I had done years of advocacy courses. So what I would say is, first of all, don't ever go to an IEP without an advocate. There are free reduced-rate advocates out there if you can't afford a full-fledged advocate. Go with somebody who knows their stuff, but also do your own homework. My favorite courses that I have taken have been Partners in Policymaking. That is offered in most states. That one is a big commitment that is a six-month-long course. There are plenty of others. I have taken Wrights Law courses. You can do their boot camps via zoom I just saw. I got an email from them the other day. Paula Kluth courses. There are plenty of courses out there to give you the basics. You need to have a good understanding of IDEA. It doesn't have to be a full-blown knowledge of it, I don't have a full-blown knowledge of it, but I know the basics. I know what the least restrictive environment means. I know what my child's rights are for inclusive education, and that has served me well. It's kind of both things. You need to do your homework, but also hire somebody who can stand up for you in that meeting, too, because it shows the school that you mean business. I don't go in adversarial to my other IEP meeting. That one, in particular, I knew we were in for a fight. There was no working together on this; it was going to be a fight. So that was the style that I had to approach that meeting with. I'm sorry, I hope I didn't overwhelm your listeners. If you're new to this, just start by taking one course, that's what I would say. I do have a free e-book on this called Disability Advocacy 101, and it has links to different courses that I've done, and different articles that are just really good to review before stepping into your first second, third, and fourth IEP.

Amy J. Brown  21:21  
That's such great information. I agree with you, having somebody in there with you. I did not know that was a thing until we had several unsuccessful meetings. I have one child that has a physical disability and also behavioral issues. For him, the door was opened a little bit more easily because you could physically see that he needed certain things physically, and he's also hearing impaired. But for my daughter, that looks typical and has behavioral issues that was a whole fight, because fetal alcohol and all that is not always recognized. There were so many hoops to jump through, and when I found an advocate that made the world of difference. I think especially for parents who already are struggling with the learning curve of a diagnosis, and whether that's medical, or you're doing therapy, mental health therapy, or whatever. That's already a big learning curve. I also would say to listeners, as you said, you don't have to know it all right now. I think a lot of moms think I don't know it all. Just learning a little bit at a time and it's kind of like a snowball effect. You kind of get familiar once yoi get over those acronyms and figure out what's going on, you can learn the language. Don't you agree that that that's helpful to start?

Jillian Benfield  22:42  
I do agree it's not. I talked to a new mom, very recently, she has an eight-week-old son who was very overwhelmed. I was like you are in the medical piece of this right now, just not right now. We will talk later about school stuff. Don't drink from a fire hose. It is just a little bit at a time. I really suggest doing a course first because hearing it and seeing it and just having that good foundation before you start doing a deep dive on the internet is really so helpful.

Amy J. Brown  23:20  
Right? Also for new moms, look at more experienced moms like us and go they know everything (which we don't), but you can't compare yourself when you're at the beginning. You've had a lot of experience. I always tell moms that I mentor when it's overwhelming to just say, "God, what do I need to know about this today?" What you don't need to know, put it aside. The time will come when you'll need to know it and I really think if you're praying about it and seeking that, the resources will come. It's a marathon, not a sprint, I guess.

Jillian Benfield  23:57  
I think too, Facebook is really a godsend for parents too. I think meeting people in Facebook groups with your child's diagnosis and kind of reaching out to more experienced moms can really be a good starting point as well.

Amy J. Brown  24:15  
Great. And we will link all your info on our website because I do know you have that Disability Advocacy 101, which I'm sure is really going to be helpful to people that are like wow, what are all the things she just said? I get asked this question a lot of times, and I'm gonna ask you. If you could go back and say something to yourself about this journey. If you could go back to your young you, what would you say to a new mom about this journey? What encouragement would you give?

Jillian Benfield  24:53  
I think I would say that the view that you have of your life right now is not the only life that's possible. Just because your life is about to take a different term, doesn't it mean it's a long term. It doesn't mean that it can't be beautiful. It will be different, and it can also be beautiful. Your child can open you up to possibilities you never thought possible. It will open you up to new experiences.  It will open you up to new people in your life that you would have never met otherwise. I don't believe that our children with disabilities were sent here to teach us anything; they're people. Nevertheless, they become amazing teachers, and you will become more empathetic than you ever have been. You will understand life like you never have before. If you're somebody who's not marginalized, now, you're going to be attached to somebody who is, and that in many ways can draw us closer to the divine. Because it's the marginalized, who are at the center of his heart. Yeah, I think that's what I would say is that this is about to open you up to possibilities you could never imagine if you're open to it.

Amy J. Brown  26:33  
I love what you said. I think that the first time whether you get a diagnosis right away, or like for us it was more of a meandering path. If you think to yourself, I can't do this, right? Like how am I going to do this, but his mercies are new every day. I have learned so much from being a special needs mom. We recently did a series on siblings, and I interviewed my soon-to-be (which I can't believe) 27-year-old daughter. She was saying, being a sibling has taught her so much about empathy, and not judging other people. It opened her up as you said to the marginalized, and that's a gift right there. If you can see it if you have the eyes to see it. I think that's great. I always feel bad. My heart goes out to the moms when they're first starting out because they're such deer in the headlights. I want to say, okay, take a breath. You don't have to do it all right now. Each day is a new challenge, but it also teaches you resilience and trust in God. It teaches you to trust in God, definitely. It helps enter you, I think what you said enters you into a community that you would not have been a part of that is really life-giving at times. I love that. I have people ask me that question too, sometimes, especially in light of adoption, what would you do differently? I just think if I would have known going in, I would have said, "Uh-uh, I can't do this." But thank goodness, we don't know going in. Because I have done it. I've done it with God's grace and help.

Jillian Benfield  28:31  
What you said about trusting God, I've had to reflect on that a lot over the years. What does it mean, really, to trust in God and all the experiences that I have been through? It's that I trust in God's grace. I trust that God's grace is what helps us to move forward, but brings us from what might have started out as bitterness to "betterment" That's what I would tell your listeners too. If you're willing to trust and you're willing to go along, God's grace is going to move you forward.

Amy J. Brown  29:13  
It's like the wind in the sails that gets your boat moving forward. I always say that you can say all you want you to trust God, but in this kind of life or even having adult kids, you put your money where your mouth is. All of a sudden you've to say I really do trust God with this. It's funny to me that we (at least I do) hold on to things and try to control things that honestly we have no control over. Learning to unclench our fist makes it so much easier to walk through this life with purpose and joy and beauty. Like I said like you say it's not that it's not all roses and butterflies. There are definitely challenging things. I said once to somebody, "Never once in my whole entire life has my will been better than God's." But for some reason, I think here are all my plans. God, here they are. Well, thank you for sharing. I know you said you have a book coming out. You talked about that.  Where else can we find you? What kind of resources do you have? You have some great resources on your website, by the way, which we will link, but just tell us a little bit about that. You said your book is coming out in 2023?

Jillian Benfield  30:27  
My book is coming out. I don't know if I can say the title of it yet. So I won't. I will tell you, it's about how the unexpected things that happen to us can help us transform into who we were meant to be. That's coming out in 2023 with Bethany House. My website is jillianbenfield.com. I've got three different ebooks. One is for just parents of kids with disabilities, a spiritual devotional, and one is that advocacy book we already talked about, and the other one you mentioned is working through weariness. Those are on my website. If you do grab one of those, they're free, but it will sign you up for my monthly newsletter, which is a lot of fun.

Amy J. Brown  31:13  
It is, I get it. It's great.

Jillian Benfield  31:16  
It's 10 Little Things. They can either be deep reflections, or this is what I made for dinner, and it was awesome. I found this hat on Amazon if you are in need of a beach, that kind of thing. So there's that. 

Amy J. Brown  31:32  
You also have book recommendations, which is not good for my wallet. I vow not to order any more books, but I just literally ordered when you recommended them. Oh, I did it again.

Jillian Benfield  31:44  
There's that. I'm mostly on Facebook @jillianbenfield and then Instagram @jillianbenfield blog.

Amy J. Brown  31:58  
Your book's coming out when in 2023?

Jillian Benfield  32:02  
Spring I think March, but I'm not 100% sure about that. So we'll see.

Amy J. Brown  32:06  
We're gonna have book twins because Take Heart, the Take Heart Moms, we're writing a book too with Revell and we come out. I think summer of 2023. We're in the process of getting our manuscript in right now. So I understand that process.

Jillian Benfield  32:21  
I'm just like a hair above you guys right now in the timeline.

Amy J. Brown  32:26  
Well, thank you so much for sharing your heart and your life with us. I know that this will be a really good interview for our listeners. They will be encouraged by it, so I really appreciate you being with us today.

Jillian Benfield  32:46  
Okay, thank you so much for having me. It was really a pleasure to talk to you.

Amy J. Brown  33:06 
Thanks for joining us this week on Take Heart. We're so glad that Jillian was here to share with us and I would just like to say that we will have all her information linked in our show notes. Our prayer each week is for your heart to be encouraged. We are grateful you're walking on this journey with us. So thanks for listening in, and join us next week for another interview in our summer series.