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Can Disabilities Bring Hope? · The Connected Mom

• 0:00
  Welcome to The Connected Mom podcast, where we have real conversations helping you to connect more deeply with God, more empathically with your fellow moms, and more intentionally with your child. Hey, I'm Becky Harling, and I'm your host today. And I am really super excited about this conversation that we're going to have today, and I really want you to lean in and listen. And I'm excited that I have with me today my co host, Sarah. Welcome, Sarah.
• 0:31
  Hi, Becky. Oh, my gosh. So glad to have our guest on today. We have covered a variety of topics on The Connected Mom podcast, but this is a topic we haven't talked about. So why don't you give us a little intro?
• 0:44
  Yeah. And so disability in kids is kind of a big issue. And I know I have a grandson with a disability, and I know what that diagnosis can do with our mamas. And so our guest today is Jillian, and she is the author of the book The Gift of the Unexpected. And Gillian is a former journalist and news anchor. She's a freelance writer, and her articles have appeared on sites such as Today, good Morning America, Yahoo. News, and ABC News. Jillian's most recent book, The Gift of the Unexpected, tells the story of her life altering moment, hearing that her son had down syndrome, and yet it gave her the opportunity to let go of her false beliefs about her identity in God. And Jillian, I love the subtitle of your book as well. So it's Gillian Benfield. The title of her book again is The Gift of the Unexpected discovering Who You Were Meant to Be when Life Goes Off Plan. And so I welcome you, Jillian. And before we dive into Anderson's story, I want to point out that as we're recording this, it's World Down Syndrome Awareness Day. And so God orchestrated that. We didn't orchestrate that. And before we dive into Anderson's story, tell us a little bit about your own faith journey. Jillian. How did you grow up? How did you meet Jesus? That kind of thing.
• 2:17
  Yeah, so I have another podcaster asked me to describe in a word what my faith upbringing was. And I said confusing. Um, I had parents who were, um, brought up Catholic. Um, and then they left Catholicism because I was their fourth child, and they had moved to a new state. And the church, um, was going to require them to do another round of Christening classes. And my parents were like, no, we've done this three times. We're not doing it again. They're like, no, then she can't get Christened at our church. And so, um, that was enough for them to be like, we're leaving. Um, so they were no longer Catholic. And anyways, I kind of grew up with religion. Um, was there, but not super, uh, important. I think my parents were trying to figure out what they believed after leaving Catholicism. Um, but they sent me to a very fundamentalist Christian school. I know they didn't know that. I think they thought all Protestant sects were the same. And, um, they just had no idea, uh, the religious training that I was encountering. And so growing, uh, up with, um, that kind of faith was just very confusing because, um, I thought my family was going to hell because they didn't believe the way that my church school was telling me to believe and that sort of thing. Um, and so it all kind of came to a head when I was eleven years old and I had a really bad church camp experience. And I walked away from that and just knew, um, that that was not going to be a part of my life anymore. Um, it was like kind of that moment when you're a kid and you realize that adults can be wrong. Um, that was kind of that moment for me. And I really walked away from faith and didn't pick it back up again until I met my husband, uh, my now husband, um, when I was about 20 years old and started attending church with him. And I would say that I really became, um, a Jesus follower, uh, after we got married. And I saw in the church bulletin that there was a nine month long Bible study that would cover 80% of the Bible. And the journalist was, I knew for me, I needed to investigate Christianity, um, if it was ever going to be a part of my life outside of Sunday morning. And so, uh, yeah, so that happened at around probably 23 years old.
• 5:02
  Wow, I love that. And I love that you investigated it because I think so many people kind of fall into following Jesus and they don't really know what they believe and they don't even maybe know why they're following Jesus. So I love that you investigated it. So wow. Thank you, Jillian.
• 5:22
  That's awesome. So if we could dive into your book and kind of the premise behind it. Obviously there must have been something unexpected that happened to give you the title The Gift of the Unexpected. So can you talk about that moment? I assume you and your husband decided to have a family. So where does the story pick up from there?
• 5:42
  I'll take you back to, um, 2013, when I was, uh, I guess 26 years old at that point. And, um, I had just finished up a news anchor and reporter job in Augusta, Georgia. And my husband had just graduated dental school and he had the Air Force, um, he took an Air Force scholarship. So the Air Force paid for his dental school and then moved us across the country to pay them back with our time. And, um, so it was the perfect time to take off of news because it was just a one year residency in Las Vegas, Nevada. And we had this wonderful year and I thought that I would go right back to TV news. Well, then, on May 8, 2014, I got a phone call from my husband saying that we were moving to Alamogordo, New Mexico. And I cried the entire day because there's not even a target in Alamogordo, New Mexico, let alone sad.
• 6:40
  The name itself sounds sad.
• 6:46
  Yes. Um, but really, news was such a part of my identity at the time. It was devastating to know that that door was going to be closed. Well, then later that same day, I got this urge, this, like, whisper in my heart, I guess you could say, to take a pregnancy test. And my husband and I were not trying. We had just had our first child had just turned a year old, and we were not in the business of trying. And an old pregnancy test made its way across the country with us, and I took it, and it was positive. And I thought, okay, God, okay, you want me to be a stay at home mom? I get it. Okay. Well, then fast forward to my 20 week ultrasound, which was eight days after we moved to Almagordo. And I noticed that the yes, I noticed that the ultrasound tech is taking a really long time. And finally, she gets her measurements thanks, S. Uh, walks out the door, nurse walks in, and she said, well, everything must look great because the doctor's not here. And as soon as she said that, he walked in. And 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. And I said, well, what does that mean? And he said, it means that your child has a higher chance of having a condition like down syndrome. And I just remember my back breaking out in fire in the words, I can't be a special needs mom. I can't be a special needs mom just going over and over again in my head like a skipping CD, because, of course, I couldn't, because that was definitely not a part of the plan. So I got blood work that day. Eight days later, I got another phone call from my husband. And he says, the doctor called. It's not good. I'm coming home. And I just remember my 21 week pregnant body just falling to the kitchen floor and the words, oh, no, oh, no, oh, uh no. Oh, uh, no. This doesn't feel real. This doesn't feel real, just coming out of my mouth again and again. And finally, my husband walked in, and I could tell he was going to be sick. And I followed him to the bathroom. And after he did get sick, he laid his head on my chest. And I just remember his hot tears rolling down my shirt. Uh, we had both just turned 27, and we were in shock that something like this could happen to us. And, um, we knew the test came back positive for something, but we didn't know what. We knew that no matter what it was, it was life altering, permanent, and possibly deadly. Um, and we had to go into the doctor's office to get the official results. And he walked in and said, well, it's not good news. Your child has a 99.9% chance of having down syndrome. And it's normally at times like these people want to talk about their options.
• 9:49
  Oh, wow.
• 9:50
  And I said, okay. What options? And he said, Option one is you terminate the pregnancy. And I said, well, what's option two? And he said, Option two is you continue your pregnancy with a high risk doctor. He said, but don't worry. Don't worry. You don't have to be a hero. If you decide not to go through the termination, you can have the baby here, and we can keep the baby comfortable, but we don't have to do anything drastic to save his life. So, in other words, we could have our baby in order to keep our consciences clean, but we could let him die of natural causes.
• 10:27
  Wow.
• 10:30
  Believed that our child had a life that would not be worth living. So I grieved as if a death had taken place, but it would take me many months and maybe even a couple of years to realize that I had more in common with that doctor than I wanted to admit. And that's, um, a lot of what this book is about. It's about the unlearning and the learning that can take place once the unexpected hits our lives.
• 11:04
  Wow. There's, uh, so much in that story, Jillian, and so much that, uh, we would like to ask you, uh, to have a doctor say there are options you can just terminate, or you can just leave the baby here with us and let him die. Uh, I don't know how you even process that. You went into this time of deep grieving, and how did you process your grief? Because it is shocking. And you're realizing these thoughts about yourself. You're realizing you don't think you can do this. What did grief look like for you?
• 11:51
  It was very dark. Um, uh, it was the worst of those days. My mom was in town with us, and she had to pull me out of bed, put me in the shower, take me out of the shower, sit me down in a chair, and she brushed my hair because I couldn't do it. It was that heavy.
• 12:17
  Wow.
• 12:17
  And it was that heavy? Yes. Because of the doctor's speech. I m mean, the doctor's speech was so traumatic that I blacked it out. It wasn't until like, a week later that my mom reminded me of what I told her, where it all came flooding back. Um, but it was also because of my own biases and misconceptions about people with disabilities. And, um, how did I process that in the early days? I really don't know, to be honest, they're so dark I barely remember them. I do remember the pastor that I was in that nine month long Bible study with. He was kind of my lifeline at the time. And um, asking a lot of those why questions and that sort of thing. And anytime I'd be like, well, I think God is punishing me and then him coming back with me, no, that's not how God works, and that sort of thing. I know that he was a crucial part of that. Um, but a lot of going through that was just sitting under the weight, it's so hard.
• 13:24
  What would you say to other moms that are deep in grief like that?
• 13:28
  Well, I would say a lot of this book is about undergoing it. I think that you're going to be met with a lot of people who say all the wrong things. They just will. And um, you're going to be met with people who are going to want to force positivity on you when you are not ready for that. And what I would say to people is to resist that insistence of positivity and of overcoming and instead undergo what just happened to you. And by that I mean I believe that there is this short time table that were allotted, uh, as Westerners and also as Christians that were allowed to feel pain for the short amount of time. And we're supposed to run to the other side of that timetable as quickly as possible. And we're told that the people that do that, those are the strong ones, that we're supposed to return to our old lives and our old selves as quickly as we can. Um, but what I am saying to a mom that's hearing this today that might be going through something like I went through is that the real mark of the strong is when we resist that insistence from society instead choose to undergo our unexpected circumstances. And for a visual for that, I would say like, if you Google Image overcome, you're going to find somebody standing atop a mountain with their arms stretched overhead in a stance that screams victory. And that's uh, what society wants from us. And if you Google Image undergo, what you're going to find is, uh, somebody about to undergo surgery. And that's what I am suggesting to parents listening to this today is that you have to admit you need help, seek out help, dig into those deep, dark spaces, confront the pain and start pursuing healing on the other side of that surgery. That's what undergoing looks like. And when we do that, the unexpected, no matter what those circumstances are, can be a gift because we become changed. Mhm. If we don't do that, if we give in to society's insistence on overcoming, there's no change that happens. And that pain that we push down will eventually come back. So my point is to go all the way through it and when we do, when we commit to that process, that will take your time, your effort, your energy, there is a gift and it's that we become transformed into the fullest version of ourselves that God dreamed up long ago.
• 16:39
  I love that when you talk about the Western idea of just push through and get to joy quickly, it's so interesting, isn't it? Because Jesus said something completely opposite, because he said, blessed are those who mourn. And I feel like everybody just kind of skips or a lot of people, not everybody skip over those words and think, oh, that just has to do with sin. Well, I don't think so. I think there is a blessing in mourning and grieving. Well, and then exactly what you talked about coming through it to the other side where you are transformed.
• 17:14
  I don't know how we got that so twisted. I don't know how Christianity became this, um I don't know, embedded with this message that can be toxically positive at times. Um, I don't know how we got there, um, because if we look at I wrote this post one time about how I used to want to skip over the Holy Week and all of the pain and sorrow, the betrayal, all of that, and skip right to the resurrection. Right? And I think that's what we do in Christianity. It's Friday, but Sunday is coming. Well, Friday still is really painful and we have to sit with the Friday, um, and the smaller deaths that we experience in our own lives too. And we do so knowing that we do have a God of resurrection. And what I mean by that is that what I have come to learn is that God takes the dead things in our lives and he doesn't necessarily bring them back to life. He takes those pieces and brings new life out of them. M, and that is one of the messages of this book. It's that your life may not ever return to what it once was, but God can bring new life out of that thing that's happened to you. And part of that new life is you becoming transformed.
• 18:47
  Wow.
• 18:48
  Amen. This is awesome. Thank you, Jillian. So I think in the book, one of the cases you make is that disability is often tied to a person's identity. That's a big statement. So can you explain that a little bit more? I've heard you talk about how identity, the unlearning, all of that was part of your journey. But how does that work with the disability tied to an identity?
• 19:17
  Let me back up. Um, so I think a lot of the unlearning that I had to do, uh, and why I said I had more in common with the doctor than I wanted to admit, is because my ideals about a worthy life were similar to the doctors. I thought that living a life of success meant living a worthy life. And by success, I mean, I had a very Americanized version of success. The getting married, the income level, the education level, all of those things. So if I had a child that maybe whose life would look different than that, who maybe wouldn't achieve that kind of success, then how would he live a worthy life? Right? Because that's the reason the doctor believed that our son would not have a life worth living, because his life would look different than that different. And that's why I struggled with that, too. And the reason I struggled with that is because I thought my worth was attached to my resume. And so that's a lot of the unlearning that I had to do. And then I realized that my worth, your worth, our worth is nothing we can ever earn. It is something that was given to us long, long ago. And so when I talk about Anderson's identity, um, about his disability being intrinsically tied to his identity is I don't believe his disability is a mistake. In every chromosome. His disability is there. He would not be who he is without his disability. I think that there are some disabilities that are so tied to identity. To wish for or to believe that that, ah, disability is going to be erased in heaven would erase the person. There is no Anderson outside of his disability. And, um, that's one of the points that I tried to make in the book, um, learning from Disabled, uh, theologians along the way that, um, I think that the disabled are actually the closest to the heart of God. And that Jesus, yes, he did heal people with disabilities here, but I believe he did so because there were such barriers. When you were a disabled person back then, you were so outcast, so marginalized, you couldn't participate in temple. That the only way to bring those people into community was to get rid of the disability. And now we have to do better. Now we have to say no, all are welcome here. No one has to change in order to enter the kingdom of God. Um, that's the conclusion that I come to.
• 22:15
  Goosebumps. Becky.
• 22:18
  Hi, Ma'am.
• 22:22
  I don't normally do that on podcast. It's been a weird day, you guys. I'm sorry. I am kind of preaching right now. The energy I'm bringing today yeah, we're.
• 22:33
  Fine with you preaching. You go for it. It's really interesting because, um, this morning in my time with Jesus, I was reading in one of my absolute favorite psalms, psalm 139, where it says, for you created my inmost being. You knit me together in my mother's womb. I praise you because I'm fearfully and wonderfully made. And I think we have this human misconception about what fearfully and wonderfully made is. And your son Anderson is exactly as God designed him. And I just love that segwaying out of that. Can you tell us about Anderson? What's his personality like? We want to hear about this kid.
• 23:18
  Yeah. Um, he's very funny recently, um, um, when he knows he's made a joke or something and we all start laughing, the laugh that he starts laughing at himself just knocks us all off our chairs. He's just so funny. Um, he's very sweet, he's very affectionate. He is also incredibly stubborn. Um, um, he's a whole human person. I think that, um, a lot of people like to, um, think of people with down syndrome specifically, um, along with other kinds of disabilities that ah, they are like otherworldly like that they are angelic or sent here to teach us something. And I don't believe that. I believe Anderson is a full human. Trust me, I have seen things. Um, and yeah, so in some ways he's your typical eight year old boy and in some ways he's not. And he's lovely and difficult to parent and he's ours.
• 24:38
  I love that.
• 24:40
  That's so cute. Okay, so I know you mentioned people said all kinds, I mean, starting with the doctor, of course, but then I'm sure, like you said, that rush to go to the positivity, um, when you knew what Anderson would be facing when he came to you guys outside of the womb. But then I'm sure later too, um, we could probably focus a lot on what not to say. But do you have one or two examples, um, of people that really did the right thing, like they said the right thing or they connected with you guys as a family? Because I'm in this spot myself. I have a friend, uh, who just received a very similar diagnosis with her baby. And so I want to do the right thing. So what were some things that were done to you and your family? Words or care that really helped you and do maybe still?
• 25:31
  I think the one that stands out to me is during that time, that initial really dark time, I had a friend who also went through very unexpected circumstances. World turned upside down, very different from mine, mhm, but because she had been through that, I think she was exceptionally equipped to meet me in my deep, dark grief. And what she said to me was, my heart hurts with yours. And I think it just was she wasn't trying to be positive. I was not in a place to receive that. Um, she was just entering the darkness with me and letting me know that my hurting heart was not too much for her to handle. Um, I wish I could say I had something else to say about something that somebody said. Um, yeah, I do remember I had a mother of, um, teenager with down syndrome reach out to me and she told me she was very real. She told me how challenging it was in the beginning to raise him and then how he has ended up becoming her easiest child to raise. And there was something very real about that where she both acknowledged the hard parts and also gently pointed me to Hope. I just loved that and was thankful for how she did that.
• 27:17
  M one of the things that I love in the book, Jillian, is how you talk about vulnerability and how that needs to be such a part of our walk. And now Anderson is eight years old and he's wonderful and stubborn and funny and all the things right. And, uh, what would you say, like, how are you doing now? Do you have times of fear, uh, as you look to the future? And what would you say to the parent that's like, okay, I got this far, but I'm really fearful about this child's future. I don't know if he'll ever be able to live on his own or I don't know that she'll ever have a job or whatever. What would you say to them?
• 28:06
  Yeah, I had, um, one of Anderson's therapists tell me when he was around two that in working with so many parents over the years, um, she described it, the reality, as pop up grief. Mhm and I will say that that is really true for me now. It's not grief over his diagnosis, it is more grief of some sort of barrier because of his disability, if that makes sense. Mhm so, for instance, at the beginning of this school year, lee just had an atrocious start to the school year. I mean, I couldn't eat, sleep. It was all consuming. I really wondered if we were going to have to pull him from school. And it ended up working out. And I'm very thankful for his school, but it doesn't always for all parents. And, um, there are real challenges that come with parenting a disabled child in a world that is still not accessible to them. So I do think that pop up grief is a reality. Um, I also will say because I've experienced so many unexpected things in a short amount of time, other things that I allude to in the book, like miscarriage and then some atrocious health issues for our youngest child. Um, I really have come to learn that there's really no way to prepare for the worse. You can try to prepare for the worse, and all that preparation will not actually prepare you if the worst comes to pass. Um, when I have those moments, like you said, like fear of the future or whatever, um, they don't hit me as hard as maybe they would have years ago. Because I know that there is only so much to be done now. And I think because of what I've been through, I'm able to live a little bit more in the present. I can prepare in the future in the ways that all of us can prepare financially or whatever. I can do those things. But when it comes to the fear, the worry, that kind of thing, I'm able to keep it in perspective. Um, a little bit more because I've been through so much.
• 30:37
  Yeah, your faith has got to get you through this because you look at God. And I think the big temptation for people is, okay, God, if you're good, then how come this bad thing is happening? Right? And yet in the bad thing is often when God meets us the most correct.
• 31:01
  I have learned that. Ah, yeah.
• 31:03
  And so, uh, as you grapple in this journey and I love the phrase pop up grief along the way, because I've seen that it play out in so many different scenarios, I think we tend to think grief is going to happen for a set period of time and then it's going to go away. But that's not the way grief works, right? And so, um, if you could give our listeners one or two tips when they're in the grief about how to connect with God. I mean, how do they connect with God when they're in the depths of despair?
• 31:38
  Um, so in chapter six, I talk about, um, it's called becoming real. And I included it in there because the Psalms have taught me so much. Um, I remember when I was in that long Bible study that I mentioned at the beginning of this podcast, I remember just I couldn't wait to get to Psalms because the only Psalms I had ever heard of were lovely, this lovely poetry.
• 32:10
  Yes.
• 32:10
  And then we got to the Psalms and I'm like, this is depressing. Um, and more than half of them are laments.
• 32:19
  Yes.
• 32:20
  And I think they are there because they teach us, uh, how to be in real relationship with God. And I think Jesus himself quoted the Psalms on the cross. My God, my God, why have you forsaken me? Because I think it was an act of extreme solidarity. And he was showing, uh, us how to be in relationship with Him when our own deaths, uh, little deaths here in this life, come this way. And so, um, I would say the way to connect with God is the undergoing that we talked about earlier. It's really going all the way through it to bringing your whole self.
• 33:08
  I love that we are out of time and this has been so good. Um, but so some of the things you said that I just want to draw our listeners back to is to kind of stay in the grief and do the undergoing hard work of grief. Because in the end, there's transformation and understand that there's going to be pop up grief along the way, which I think is so vital for our listeners to understand. And then, uh, you can't prepare for worst case scenario, except really to build your faith in God beforehand and trust that when bad things happen, god will meet you in that. And then to really learn the language of lament. I think, uh, we undervalue the language of lament. So often there are joyful moments. I'm sure for you, Jillian, and for our listener in the parenting journey. But it is tough when you have a child that has a disability. And so learning to live in the present was another piece, ah, of advice that you gave us and maybe not going to all the what ifs that could happen in the future. So I just want to end our time, um, by praying before I pray. Where can our listeners connect with you? Because I imagine that we have a whole bunch of listeners out there that are saying, wait, I'm desperate for more. I got to get this book and I've got to find Jillian somewhere. So where can they find you?
• 34:46
  I'm on Facebook at Ah. JillianBenfield Instagram. JillianBenfield Blog. My website is jillianbenfield.com, where I have three free ebooks. Two are specifically for parents of kids with disabilities, and one is for anyone going through any, um, unexpected circumstances. And, um, my book is on Amazon and it's also on Barnes and Noble, and it's always 30% off at Baker Publishing House.
• 35:16
  Great. Thank you, Jillian. Hey, let me just close this out with prayer. Lord Jesus, as I think about Jillian's life, I thank you for the gift of the unexpected. I thank you for anderson. I thank you that he is fearfully and wonderfully made in your image. Father, I thank you for the wisdom you have given Jillian. And Lord, for our mamas, for those who have been devastated by a diagnosis for their child, would you come alongside them in some unexpected way and strengthen them through the journey? May they be real and vulnerable with those around them who can perhaps support in ways of comfort. Lord, may you just meet them right where they are. And we thank you, Lord Jesus, that in the end, you are the divine comforter. And so we lean into you for that. In Jesus name, amen. Hey, friends, thanks for joining us today on the Connected Mom podcast. And we hope that you'll join us next Thursday for another episode where we're going to have another real conversation, helping you to connect more deeply with God, more empathically with your fellow moms, and more intentionally with your child. Goodbye, ladies.