On World Down Syndrome Day, Jillian Benfield, author of The Gift of the Unexpected, talks with me about whether it is hard to be the parent of a child with a disability, how our perspective on ourselves, faith, and the world has changed through our experiences as parents, and about the gift of the unexpected.
“Jillian Benfield is a former journalist and news anchor. She holds a broadcast journalism degree from the University of Georgia. 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 and her husband, Andy, and their three children make their home on Florida’s Space Coast.”
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Transcript* and more are available at: https://amyjuliabecker.com/jillian-benfield/
Season 6 of the Love Is Stronger Than Fear podcast connects to themes in my latest book, To Be Made Well, which you can order here! Learn more about my writing and speaking at amyjuliabecker.com.
*A transcript of this episode will be available within one business day on my website, and a video with closed captions will be available on my YouTube Channel.
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I really believe that Jesus' life and ministry came alive to me when a child with a disability entered my own. I think that before I wanted shiny Jesus ascending from a hill. And with Anderson in my life, I see Jesus who was homeless and was an advocate for the marginalized. And I see the marginalized not necessarily in need of fixing, but at the center of God's heart. And that has shaped my views on disability and also shaped my views on who God is and what God values.
Amy Julia (54s):
Hi Friends, I'm Amy Julia, Becker and This is Love is Stronger Than Fear A podcast about pursuing hope and Healing in the midst of personal pain and social division. Today is March 21st World Down Syndrome Day. And for those of you who aren't aware of this day, it's a day where we celebrate people with down Syndrome around the globe. And that means it's a really fitting day for me to have a conversation, or at least to share with you the conversation that I've already had with Jillian Benfield. Jillian has written a new book, The Gift of the Unexpected, about her journey as the mother of Anderson Anderson is now nine years old and has down Syndrome And. we get to talk today about whether it's hard to be the parent of a child with a disability and how our perspective on ourselves and our faith and the world has changed through our experiences as parents of particularly Anderson and Penny And.
Amy Julia (1m 48s):
we really do get to talk about The Gift of the Unexpected. I hope you enjoy this conversation as much as I did. I am sitting here in the Zoom studio, actually we're not in Zoom, we're on something called Riverside fm, but I'm here in the Riverside FM studio with my friend Jillian Benfield, the author of The Gift of the Unexpected Jillian. Thank you so much for being here today.
Jillian (2m 14s):
Thank you so much for having me. I'm really excited about this chat.
Amy Julia (2m 18s):
Me too. Well, so we are recording this podcast in anticipation of a day that some people might know about called World Down Syndrome Day. And if those of you are listening on the day this podcast drops, whether or not you know it, it is World Down Syndrome Day, which is March 21st, 3 21, maybe Jillian will explain why 3 21 is World Down Syndrome Day But. I wanted to start there because my sense is Jillian, that both you and I did not ever expect to be celebrating World Down Syndrome Day on an annual basis. That was not something that we set out as young children or young adults anticipating.
Amy Julia (2m 58s):
And I thought that maybe talking about how World Down Syndrome Day has changed for you over the course of the past 10 years might be a way to get into your story and this beautiful book that you've written.
Jillian (3m 9s):
Thank you. Yeah. So no, I did not know World Down Syndrome Day existed. And the reason I know World Down Syndrome Day exists and because the reason I've been celebrating for the past eight years is because in, gosh, August of 2014, I had an ultrasound that at the time I thought had gone wrong is probably how I would explain that. And the doctor came in, 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 me with no medical knowledge whatsoever was like, well, what does that mean?
Jillian (3m 53s):
And he means, it means your child has a higher chance of having a condition like down Syndrome. And 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, which is not a term I use anymore. But those were the thoughts in my head at the time. And because of course I couldn't because that was not a part of the plan. Right, right. Well, fast forward to eight days later, we got blood work done and I get a call from my husband and he said, the doctor called, it's not good. I'm coming home. And I just remember my heavy 21 week pregnant body following to the kitchen floor and just saying the words, oh no.
Jillian (4m 36s):
Oh no. Oh no, this doesn't feel real. This doesn't feel real. My husband walked in and he was wearing his uniform at the time. He was active duty military at the time and I could tell he was going to be sick and started rushing to unbutton his, his uniform for him. And he did get sick. And when he was done, I remember him resting his head on my chest and his hot tears rolling down my shirt, And. We had just turned 27 years old And, we were in shock that something like this happened to us and we knew the test came back positive for something, some sort of trisomy, but we didn't know what.
Jillian (5m 16s):
So we had to go in to get the official results. And the doctor said to us, well, it's normally at times. He said, I'm sorry. He said, well, your child has a 99.9% chance of having down Syndrome. And it's normally at times like these people wanna talk about their options. And I said, what options? And he said, option one is you terminate the pregnancy. And I said, okay, 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. You if you decide not to go through with the termination, you can have the baby here And.
Jillian (5m 58s):
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 to keep our con clean, but let him die of natural causes. The doctor believed that our child would have a life that was not worth living. So I began to grieve as if a death had taken place And it would take me many months and possibly even years to realize that I had more in common with that doctor than I wanted to admit.
Amy Julia (6m 42s):
Yeah. Well there's so many points of your story that I can relate to, including the August part. I, you probably know this, But I was reminded in reading your book that your son Anderson was born on December 31st and our daughter Penny's birthday is December 30th. Yes. So we had this very similar timeline in terms of like an ultrasound And. we didn't end up with a prenatal diagnosis. That's a whole other story. But having some sense in, you know, that at that 20 week ultrasound that maybe there's some questions about what's going on with your child. And then also having an experience of what I ended up calling ugly grief, grief over things within myself that I wished weren't true in retrospect, but they were.
Amy Julia (7m 28s):
And the grief actually did was a purging process. Right. Like there was a, a loss of self that ended up revealing a truth that was deeper than even just myself. Right. A truth about who we are as humans and and what it means to be, to be beloved. But I will, I, I wanna turn it back to you just to move forward a little bit with your story. To move from that place of grief to a place of celebration and not unfettered celebration, not toxic positivity, celebration. Right. But like delight in the child who you have been given and the life you've been given with that child.
Amy Julia (8m 9s):
Can you just speak a little bit to that movement?
Jillian (8m 12s):
Yeah. So I think the process from grief too celebration really had, for me it was a lot of deconstruction to get me there, you know, so a lot of that was deconstructing my idea of success and worth and how I thought those two things were tied together when in fact they're not. And you know, the reason I think I felt that way is because I was someone that was always performing for my worth, right? And I thought that if I achieved all this worldly success, that's what made me worthy. And so when I had a child who maybe wouldn't achieve those things that we value as a society, you know, maybe wouldn't get that college degree or wouldn't earn this material wealth or wouldn't, you know, do these things that we as a society value, that's where the crux of my grief fell.
Jillian (9m 10s):
And so I don't know where the turning point was with, with going from that deconstruction to celebration. But I can tell you that it was pretty soon after Anderson was born. I remember celebrating that first world down Syndrome day. And I remember being just so ready for this new life. Mm. Not only his new life but, and I, he was just the cutest little baby and the happiest little thing. And you know, he was a delight just all in his own But. I was also ready for my new life, you know, of him, of being his mom, you know?
Jillian (9m 56s):
Yeah. And I try my best not to co-opt, you know, his story into mine, but the truth is, is who I have become has changed because of who he is. That's just the truth of it. And I'm so thankful for how he has changed me as a human and continues to teach me along the way, even though his life was not meant to teach me something, he has been and continues to be my greatest teacher. And that is always something to celebrate.
Amy Julia (10m 30s):
I love that. And towards the end of the book, you write about what light does and how light doesn't make something new or true. It just reveals what's already there. And there is a sense in which hearing you talk Anderson in your life, the same is true for me with Penny. There is a revelation that happens both of the kind of an exposure of the hard things we don't wanna see about ourselves, and then also an exposure of some of the beautiful things that are true. And that maybe we, because of being so taken by the narrative of success and achievement, even tried to hide some of those beautiful things about being vulnerable, people who have needs for others and who can exist in relationships of love and patience and trust rather than just striving and achieving all the time.
Amy Julia (11m 21s):
But there's kind of this dual revelation of, of both the things we don't wanna see and the things that we've kept hidden because we're scared of letting them be seen. And there's some real beauty that comes, I think, on the heels of that. Yeah. Well, so I wanted to ask you your title of the book, The Gift of the Unexpected comes up really early on when you make a distinction between overcoming the Unexpected and undergoing the Unexpected. Would you just explain what you mean by that distinction between overcoming and undergoing?
Jillian (11m 52s):
Yeah, I think that there's, there's this real push in Western culture and also in western church culture to overcome all of our Unexpected or difficult circumstances. Yeah. And if you Google image the word overcome, you're going to see somebody standing a top of mountain with arm stretched overhead and a stance that just screams victory. If you Google image search the word undergo, you're going to see somebody who is about to undergo surgery. And what I am suggesting is that we don't try to overcome our Unexpected circumstances because another word for overcome is to suppress.
Jillian (12m 34s):
Yeah. And I think that's often what society and church culture expects of us to push down what is painting us and basically use our Unexpected circumstances to act as our own PR people and Jesus's PR person as well. Mm. Thank God Jesus doesn't need a PR person. But what we do instead, what I am suggesting instead of that suppression is that we do undergoing as much like the person about to undergo surgery. We have to ask, seek out help, we have to dig into the deep dark places. We have to confront the pain.
Jillian (13m 15s):
Yeah. And then we have to pursue Healing afterwards. And so what undergoing looked like a lot for me was a lot of unlearning. It was unlearning, again, those ideas about worth and success. It was also unlearning that theology that was handed to me and replacing those not so great ideas with better ones. And I think that once we unlearn and learn, we start to change in that process. Richard Goer says that one of the great paths to transformation is great suffering. And you know, although I feel very differently about down Syndrome today, there was a great suffering that was real when I found out about Anderson's diagnosis.
Jillian (14m 2s):
And I can, I believe that those words are true, that one of the great past two transformation is suffering. And so I think when we encounter the Unexpected hard things in our lives, whether it's something we'll feel very differently about one day, like having a child with a disability or not, maybe it is just something that is tragic, which I have also been through. I think that we can, if we choose to undergo that thing, if we choose to let it, let it teach us who we are and who we are not maybe a little get closer to who God is and who God is not, we become changed in that process.
Amy Julia (14m 46s):
Yeah. I think about when I was doing, you know, so much work on the concept of Healing, one of the ways I ended up writing about it was honesty, humility, and hope are what we, the kind of movements of Healing is what I ended up calling it. Cause I don't think it's like, oh, three steps, you know, just be honest and then be humble and then be hopeful. But at the same time, I, I hear you describing that, that in terms of the undergoing lying on a surgeon's table table, you've been honest about the need for something that you can't do yourself. And so that's where the humility comes in needing to ask for help. But then you're also hopeful that it can change or you wouldn't be lying there. Right. And, and then the Healing comes. And there's also a line that comes to mind from Gregory Boyle.
Amy Julia (15m 29s):
He writes about surrendering to Healing. And I think that's similar in that sense of there is so much pride and Resistance in us that says, I just don't wanna have to undergo what's coming. And so I'll try to overcome or suppress it instead. But there's also a real beauty and a real Healing that becomes possible when we do that, that undergoing that you're describing there. And I'm curious, cuz you did, you've mentioned this a couple times, you know, your perspective on Anderson has changed over the years. So the way you felt when that doctor first gave you the diagnosis, the way you felt, even in maybe the early months of his life. And you and I also shared some of the what, you know, I would call self-pity of, you know, sitting in a children's hospital and our friends are not there, and why do I have to do this?
Amy Julia (16m 17s):
You know, there's, there are all these aspects of life that have been hard, and yet you've come to a place of being able to say, this is a good life and I'm celebrating and I'm excited. But one of, one of the things I really appreciate about your book is it's not an everything happens for a reason, tie it up in a bow book. You really do wrestle with the problem of evil, with the problem of suffering. And I think wanna really make space for the reader, or in our terms of our conversation here, the listener who has not landed in a place of celebration or gratitude and who's simply in the midst of that Unexpected hardship. And so I'm curious if you just, what you wanna say to that person, to the person who's reading your book or listening to this conversation and says, that all sounds good, but my kid is still sick.
Amy Julia (17m 6s):
Or, you know, my pain is still very ever present. How, how do I move forward? What does it look like to continue to undergo Yeah. Where is there hope for me?
Jillian (17m 18s):
Yeah. I think, you know, we've gone through some pretty dark periods with Anderson and then my youngest son who has medical issues. And so I definitely empathize with the person who it's not, life isn't all tied up and it's not tiny. And I think for me, one of the bigger shifts in my perspective when, when I can't all tied up in a bow is, you know, what does it mean to live a blessed life? you know, know. And a big turning point for me was reading one of Adam Hamilton's books, I think it's called The Journey. And it, it's about Mary Jesus' mother and how you know, her life was really hard.
Jillian (18m 4s):
Wow. It was really hard. And, we make a mistake when we think that li being blessed by God, living in God's blessing means living a life of bliss. Larry, I don't think Mary's life was blissful. Right. you know, she watched her son being tortured on a cross left to die, and yet she was living within God's good purposes for her. And I can't say that whatever the listener is going through is something that God has ordained or not. But what I can say is that if we can let go the idea that we are unblessed, right, cause of our circumstances, and look for the areas where we can draw closer to God through our circumstances and then not, and then live into purpose from that point, if that makes sense.
Jillian (19m 1s):
Like, not that this happened on purpose for purposes, but purpose can come from those Unexpected places. And that purpose oftentimes is a change from within. It's a cha. It's an internal thing that can happen. And once we start to let our circumstances alongside our creator change us internally, we can start to see purposes come from that change purposes outside of ourselves. And oftentimes that looks like, you know, us becoming exceptionally equipped to help others who will eventually go through circumstances that we have walked through.
Jillian (19m 48s):
So it's not a neat tidy answer. It's not, I can't package it up in above for the, for the listener But I can say that purpose can come from our Unexpected circumstances. And often time it's an internal working.
Amy Julia (20m 7s):
And I think your book Bears witness to that. Again, not in a neat and tidy way, but in a way where you're able to demonstrate some of the small kindnesses. There's a beautiful chapter about just people who helped you when they saw that you were in a hard spot and then later you and your husband being able to do the same. And the sense of like solidarity in the midst of suffering or watching our kids be in a hard place that I thought was really beautiful. And then you also have the kind of how this shifted and changed things within who you are. So not your external circumstances, but your internal sense of self, which was both, again harrowing and also bringing you to, to a greater sense of not just purpose, but I think rest and peace within yourself, which is a little more tied to the reality of God as an enduring and faithful presence.
Amy Julia (21m 2s):
Yeah. So I do, again, just for any reader who or listener who's wondering about that, I think the, your book deals with all of that really nicely and, and again, not in kind of a neat and tidy way and, but maybe that also leads to the question of faith and the way in which having a child with down Syndrome has changed or shaped your faith, your understanding of God. And you can, and there's probably 10 different answers you could give here. So you can pick whatever you wanna say But. I'm just curious how, yeah, you're not just saying, talking about being deconstructed as a person, but actually there's some measure of like the way you saw the world, even as a Christian being changed and shaped by the presence of Anderson in your life.
Jillian (21m 46s):
Yeah. I could answer this question a lot of different ways because I think that it has changed so much in my faith. I think that my idea of, again, a blessed life has changed my idea of what Jesus and actually promises an abundant life that has changed as well. And I think abundance can be in prosperity, gospel culture can mean like we think that abundance means some sort of perfection. Yeah. When in fact I think it means a very full life, which Anderson has is a part of for sure. But I think one of the bigger ways, and for the purpose of this conversation, I'll answer it with, I really believe that Jesus' life and ministry came alive to me when a child with a disability entered my own.
Amy Julia (22m 39s):
Jillian (22m 40s):
I think that before I wanted shiny Jesus ascending from a hill Jesus. And with Anderson in my life I see Jesus who was homeless and was an advocate for the marginalized. And I see the marginalized not necessarily in need of fixing, but at the center of God's heart. And that has shaped my views on disability and also shaped my views on who God is and what God values.
Amy Julia (23m 25s):
I love that answer so much and resonate with it so much too. And part of what I wanna get back to that But I first wanna take a little bit of a diversion, but for this reason you have given us a little indication of that. But I'd love to hear more about how the society around you, so medical professionals, maybe the church, maybe other people, encount, all of those encounters, how those shaped your initial impressions or perceptions of having a child with a disability. And then I wanna get back to how that's changed, but just what, what were some of the messages that were given to you from medical professionals or other people about disability and about down Syndrome?
Jillian (24m 5s):
Yeah, I think obviously the encounter with the doctor I, I know it sounds like an extreme story, but through work that I have done with a nonprofit called the Down Syndrome Diagnosis Network, that story, although the delivering of his speech was a little on the extreme side, it's not outside the norm because there is absolutely a bias within the medical community about disability. And I'm sure you've addressed this on this podcast before, but the medical model of disability and looking at disability as something in need of fixing. Yeah. Right. And so,
Amy Julia (24m 43s):
Well Anne, I'm just gonna interrupt you for a second. Something like down Syndrome is essentially unfixable.
Jillian (24m 48s):
Amy Julia (24m 49s):
And so that poses, it's like a really deep problem if the only thing to be done with disability is fix it and you know, ahead of time you've got an unfixable problem. And again, I think you and I would now agree that those are the wrong terms with which to be talking about disability in general. But if that's the model, then it is a problem. And I just wanna underscore, I probably, if I were outside of this community and not having these conversations over and over, and again with pregnant women who are getting prenatal diagnoses, I probably would not believe it or I would think, I wouldn't think you were lying But. I'd think, yeah, that was one doctor, that's not what happens. I'd, I'm, it is incredibly rare for me to have a conversation with someone whose doctor has presented a diagnosis or a potential diagnosis of down Syndrome in neutral terms.
Amy Julia (25m 38s):
Yeah. And not in negative ones. So keep going.
Jillian (25m 41s):
Yeah, no, absolutely. It really is not uncommon. And I think it is because we are still in that medical model of disability where we look at disabilities as something to fix. And then as me back then, knowing that down Syndrome was not fixable, that was the hardest part. And so then running into medical professional after medical professional and there was often a bias, I remember with Anderson's cardiologist him saying to me something that he has a defect in his heart that really won't affect him probably until he's in his sixties or something like that. But the assumption was that I can't remember exactly what the doctor said to me, but he is like, oh, well you don't have to worry about that.
Jillian (26m 24s):
Basically meaning that Anderson will be dead before we have to worry about that. Yeah. And I, you know, Anderson was four months old at the time, you know, like it just the the insensitivity right. And the basically the lack of care I think that people with down Syndrome and their parents receive from the medical community is alarming. Yeah. you know, thankfully we have had good experiences too. Normally those good experiences have come in the way of therapists, you know, who are working with kids with down Syndrome all the time. And Yep.
Jillian (27m 4s):
Look at the, you know, they work with them to reach their fullest potential, not, not as a problem to fix, but to live into their full selves. Right. And also different, I've just had better encounters with that. But on this same note, there is a part in the book where I have a friend who has cerebral palsy and uses a wheelchair. And I asked her one time, thank God she's been very patient with me with my questions. And I said, what would you say to someone who would look at you and assume you would want to be healed? Like would assume you'd want to be walking. Yeah. And her answer to me was, that's like asking a black person if they'd wanna change their skin to white, like this is who I am, this is my identity.
Jillian (27m 51s):
And so even that's where we need to get as a society and in the medical community, is looking at disability as a part of someone's intrinsic identity. That changed so much for me once I started to see that down Syndrome wasn't a problem to be fixed, that it was not just a part of Anderson, it was in every part of Anderson. And to take that away or to try to minimize it is would change who he is. Yeah.
Amy Julia (28m 25s):
Well, and that kind of leads me, there's a slogan that gets tossed around within the down Syndrome community that you write about a little bit. And the tagline is, we or they or you are more alike than different. And I would love for you to just explain where that comes from, that concept more than different and why that might be helpful in some capacities, but also why it might be problematic. Could you speak to that?
Jillian (28m 51s):
That is a tough one. I really do feel like that slogan is so tough because I understand the concept of it, right? Like we want to, I, I think, I don't know exactly where the slogan comes from, but it is very prominent in the down Syndrome community. And I think that it's used as a way to show that our children are very much like your children and they want the same things your children want. Yeah. And as a way to promote inclusivity probably is why it's used to make it so we befriend children with down Syndrome or adults with down Syndrome. But why I think it's problematic is yes, I think that Anderson wants what everyone wants in the sense that he wants to belong.
Jillian (29m 34s):
Yeah. you know, I think that he wants to be love for who he is. That part is similar, but Anderson is also very, very different. And I think when we use that more like than different slogan, we're kind of making the difference a negative thing a less than thing. We wanna focus more on the similarities than the differences. I think we should focus on the similarities. But I also think we should focus on the differences. Because the differences are what makes Anderson who he is. you know, we don't all have to be alike to belong. And that's, that's my problem with that is that slogan is, I think that it's still makes disability less than,
Amy Julia (30m 24s):
Well, and I've said this probably a half dozen times on this podcast, But I think it bears repeating right now that for me, when Penny was born and I too was brought into this space of recognizing people on the margins now, including my daughter in a way I had not ever before. My initial instinct was to say, I wanna break down barriers so that you can come to my space and be like me. But I was still the model for human that she was supposed to be aiming for. And you know, other people like me, whatever that might mean, were also that model. And over time, as I was exposed not only to people with down Syndrome, but other, you know, intellectual physical disabilities and just other people on the margins for various reasons, I began to recognize the inherent problems with being like me that came along with some of the things we've talked about, that success and achievement culture, a sense of performance as proving my worth rather than an intrinsic worth that comes and is bestowed upon us because of being beloved.
Amy Julia (31m 27s):
And so I began to see that, wait a second, come on in and be like me is not, let's exist in mutual love relationships where we give and receive to one another, where we learn from one another through our similarities and our differences where we really and truly belong to each other, rather than only belonging if we conform to a set of norms that have been established by, you know, the meritocracy or the medical people or whoever. So I really resonate with both that, again, that instinct and being like, okay, it was not a bad instinct to want your kids, of course, to be a part of things. And yet we're almost apologizing for something that doesn't need to be apologized for in terms of that, that sense of, of difference being diversity, being beautiful, and being something that we all need from one another.
Amy Julia (32m 20s):
Jillian (32m 20s):
Yeah. I think you summed it up better than I did.
Amy Julia (32m 23s):
Jillian (32m 25s):
And I, I can relate to that, that track as well. The of, originally I wanted Anderson, even after I had grown a lot in this area, I still wanted him to have the things that I had, I still still wanted everything to pretty much resemble my life. And I probably even in the last two years have grown in that area where I don't, I, I've let go of needing to insert my norm on his life. And that's, that's a good place to arrive.
Amy Julia (33m 2s):
Yeah, absolutely. And true honestly, that is where the experience for us at least of parenting a child with a disability has been incredibly life giving. I hope for our whole family because I think I would've done the same with my other kids without being as clear that that's what I was doing. I was imposing a standard that came from who I was. Rather than saying, my job as your parent is to help you discover who you are, who you've been created to be, and what a gift that is that I get to help you do that. But it's not to make you in my image, it's not to teach you how to be me, is to teach you how to be you. And to help you discover that But I think for you and I both, we lived these lives where we really had not been taught how to discover who we were, but how to perform according to standards set by somebody else.
Amy Julia (33m 53s):
Whether again that was a pastor or a teacher or a parent or whomever. And I think it's so beautiful, and again, so much a part of this kind of upside down way of Jesus that these kids who are, you know, so different than we are, are the ones who help us or seemingly, I guess at least on the surface so different than we are the ones who can help us actually discover that truth about our nature that's really different than performance and achievement. Yeah. This is switching gears a little bit and I only have a couple more questions for you, but one is I really appreciate it at the end of the book you write about living in the and and not the but, and I'd love for you to speak a little bit about that.
Amy Julia (34m 37s):
And specifically in this question you're talking, you're writing about the question, is parenting a child with a disability hard? Yeah. And the instinct to say, well, it's hard, but, so can you, can you speak to that a little bit?
Jillian (34m 50s):
Yeah, I think there was a time there probably like kind of how you go through stages of faith. I was going through stages of becoming a parent of a child with a disability and there was a time there where I wanted to be a cheerleader. Nothing but a cheerleader for Yes. Anderson and for his disability. And so even though, you know, we went through a period where it would be nothing for me to be at the doctor's office five days a week, I would, you might have heard me say at that time, parenting a child with a disability is really hard, but it's so good, you know? Yeah. And eventually, I thankfully had one of Anderson's doctors point out to me one day, he said, we understand that you are, you have a lot more going on than the average parent And, we are here for you.
Jillian (35m 44s):
Mm. And you know, I, that was a truth. I was finally ready to hear before I wanted not only my child to be like everyone else, I wanted to be like everyone else. Hmm. And so it was kind of hard to imagine that my life was, did have challenges that my friends did not have alongside their children. And so I think that's why I used that butt piece so often. But eventually I came to a place where I was able to replace that. But with, and, and what that looks like today is parenting a child with a disability is the hardest thing I've ever done.
Jillian (36m 25s):
And I can tell you that it is one of the greatest Gifts of my life. Right. Both of those things are true. And before what Anne does is it doesn't negate that first part of that sentence. It allows me to live in the fullness of my reality, the fullness of my abundant full life. Yeah. Instead of trying to again suppress, push down the harsher parts of, of my life. And a lot of those harsher parts of my life that come with parenting a child with a disability is we are raising him in a world that is not accessible to him. And that can be very, very hard.
Jillian (37m 9s):
And I think that to not admit that to myself and to others would be to not show up in the fullness of who I am and my reality. And so that word and has helped me to reframe my life in the truest way that I know how
Amy Julia (37m 29s):
I think it's also helpful now, you know, penny is 17, so she's, you know, almost a decade older than Anderson and it's been helpful. We haven't talked about the words and versus butt or something But. I think one of my, I don't know, temptations as a mom is to try to give her a narrative of only good, only positive when it comes to having down Syndrome. And she does face challenges and it is hard sometimes to be in her body and her mind and in our society probably even most of all. And it helps me to be able again, to name the both and at rather for her and to let, allow her to do that rather than if she says that something is feeling hard not to try to kind of minimize that for her.
Amy Julia (38m 20s):
I do find myself though, I really hesitate still less so now than when she was younger, but still in public, like in the, I know, you know, you obviously have a large social media following and when I'm writing posts about Penny or about our life, I feel like I am tempted to downplay some things that are hard because I so want to advocate for the life of children with down Syndrome knowing that lots of women are facing decisions that are pretty urgent about whether or not they're gonna terminate a pregnancy. And I want them to have like accurate information, which usually they're getting as we've talked about, like some negative or biased information.
Amy Julia (39m 1s):
And I also don't want, and I know you don't either, I don't want pity from people knowing that it's hard, But, I do want compassion. And I do want that acknowledgement that like, yeah, I might not be able to be on the PTA and it's not cause I don't care about the school, or I might have to make different choices about travel or about whatever it is. Like my life is just different. And there's some things that are hard about it that come from having a child with a disability. Yeah. There are lots of things that are good. Those are both true. So yeah. I, I think it's a point I just appreciated you naming that because for me that's a little bit of an unspoken struggle or tension in having a child with down Syndrome.
Amy Julia (39m 41s):
Yeah. To actually hold on to both of those things, I,
Jillian (39m 45s):
I think it is for me too, and I have not, I have not figured out a way to don don't think I'll ever be able to share everything I'd want to share maybe in order to protect Anderson's privacy. And that's, that's a constant struggle for me as well. It is a hard thing what I can, what I do try to talk about is the injustices that he faces as a disabled person. Yeah. And also I try to talk about the more that comes with parenting a child with a disability, because I think parents of kids with disabilities need to know it's not just them.
Jillian (40m 27s):
And I think if they are only seeing these, you know, these Instagram accounts that are all positive about down Syndrome or whatever the disability is, that can be a really isolating place. But it's, it's a very hard balance to strike. And
Amy Julia (40m 41s):
I think Well, and, and I think the more what you're referring to and your right to do so is like more time, more effort, more heartbreak like there, but there's also, and I you write to this too, more beauty, more love, more connection. And so there is this sense of just being expanded in every area. Abundant life indeed. Right? Yeah. Like in all of those different ways. Yeah.
Jillian (41m 6s):
Yeah. Well said. And I do, I try to strike that balance and sometimes I get it wrong and I've been called out by disability advocates before and I try to learn from them as best as I can. Yeah. And while also trying, trying to stay true to my reality as a parent of a child with a disability because us parents of kids with disabilities need places to go to, to be seen. And so I'm sure I get it wrong a lot. But I, what you just said there is, what I hope to convey is that there is hardship with it, there is injustices with it and there is also so much beauty and I I wouldn't trade it.
Jillian (41m 51s):
And that's the truth.
Amy Julia (41m 53s):
Amen to that. I also think you do a really good job, and I want listeners to hear this, that one of the major shifts that seems to have happened in you reading your story is Yes. A shift in how you see Anderson, although he was your baby from the get-go. Right. Like that. And, and same for me with Penny, where it's like I, you know, if I had her with me, and this is still true, it's like Right, she's my kid and she's amazing and I love her. And so there is that sense of like, oh wait a second. The world I live in is structured both physically and kind of ideologically intellectually to reject my child.
Amy Julia (42m 34s):
Yeah. And no one's saying that explicit. Well some people are saying it explicitly, lots of people are not. Right. But that's functionally what's happening all day long. I wrote a little, you know, Instagram post a couple months ago cuz Penny and I went to an eye doctor appointment and the optician, like the person who first was doing the exam, not the doctor, did not talk to me, only talk to Penny to say just doing the exam. And what I recognized was like, I, I am so shocked that you are treating my daughter as the subject that she is and that you aren't assuming, and it's, there's some kids who need their moms to help them communicate.
Amy Julia (43m 14s):
That's fine. Penny does not in this situation, but the default is to me all the time. And having her kind of honored for who she was was such a shocking experience that it showed me, oh, this is not what ha like all day long. She is not looked in the eye and spoken to as a teenage girl. In fact, she's infantalized a lot of the time. Right. And so I think there, those moments for me remind me that this is not about Penny, but it is about the way in which the world sees Penny and how can we continue to create a world that is different not to create children who are different than who they are meant to be.
Jillian (43m 54s):
Yeah. And I, I think for me, that's why like school inclusion is so important to me. Yes, there are benefits for reading and there are benefits for job placement and all of those things. But I hope that if we can start by educating children with disabilities alongside their typically developing peers that will see a shift in society and the way we view people with disabilities. And that that experience that you had at the eye doctor, that will be the default. Right. you know, we go to the person with a disability first instead of asking their caregiver or whatever to speak for them. Right. And of course there are people who need that, but that will be our default is that we assume that this we assume competence, I guess.
Amy Julia (44m 40s):
Yeah. And, and assume kind of personhood, you know? Yes, exactly. But I think often not done better put. Well, I have one last question and it's a quotation you wrote. We thought Anderson needed to be healed of his intellectual disability. We would soon discover that we were the ones who needed to be healed of our intellectual certainties. And as we come to a close, I just wanted to ask this final question of how has The Gift of the Unexpected been a time of Healing you right here about being healed of intellectual certainties? I think there's more even than that, right? But in what ways has this journey been a journey of Healing for you?
Jillian (45m 21s):
I once thought my worth was attached to my resume, and now I believe that my worth comes from my creator and nothing else. I once thought that if I could find all the answers to how God works, that I could, I could live with this certainty of peace. And what I instead found was this God that continually surprises me with the amount of grace he provides when the Unexpected hits our lives. He surprises us through his grace and how his grace moves us forward through Healing.
Jillian (46m 1s):
Right. Mm. I think I have been healed of the idea that there is one way to live that is successful and worthy. And instead I, I've believed now that there are many ways to live and that God has a desire for all of us to live into our entireties because we are beloved. And I think that he dreamt up the dream of you and me long ago. And I think that he hopes that we are brave enough to live into the fullness of ourselves. And when we are living into the fullness of ourselves, I think we discover who he is and more about the world that he designed and intends, intends to us to live in.
Jillian (46m 49s):
Well, so I'm sorry this was a little complicated. I guess I, I just, I feel like Healing has come, it's been such an ongoing process and so big. It's hard to sum up, but Anderson has changed my politics. He has changed my worldview. He has changed the view I have of myself, the view I have of others, the view I have of God and the view I have of, of this earth. And I'm very thankful for the Healing that God has brought into my life through my child.
Amy Julia (47m 29s):
Hmm. Well, I say amen to everything you just said. And one of the things in recent months that's been helpful to me is to think about Healing as a spiral where we are returning to a similar place and often get there and say, gosh, really I'm back here again. But then we realize we've actually learned something in that place. And so it is a spiraling upward that it's, yes, we're circling back around and being, and there's like a deeper Healing in a place of wounding, but it's not the same because we have learned something. And so that sense of spiraling upward is even what I hear in what you're calling convoluted. But there's a sense of like, but it's everything and it keeps happening and it's not over. And I think that actually speaks to what Healing is and to the ways in which the Healing love of God is just a continuous invitation to more and in all the ways you were speaking of the more that can be hard and the more that is incredibly beautiful.
Amy Julia (48m 22s):
So thank you so much just for sharing more of your story and just this yeah. Beautiful book and witness to the lives of Kids with disabilities, kids with down Syndrome. you know, again, On, World, Down, Syndrome Day. We are just celebrating these particular lives. But I'm also really grateful for your words for us today and in this book.
Jillian (48m 45s):
Thank you so much Amy Julia for having me. You have been helpful to me in more ways than you know, both in my Healing journey and as a writer as well. And I appreciate your friendship.
Amy Julia (48m 60s):
Thanks Jillian. Thanks as always for listening to this episode of Love is Stronger Than Fear. Again, Jillian's book is The Gift of the Unexpected Discovering Who You Were Meant to Be When Life Goes Off Plan. If you receive something meaningful from this conversation, please do share it with others, let me know, I'd love to hear about it. My email is Amy Julia Becker firstname.lastname@example.org. I am grateful that you're here and I also want to thank Jake Hanson for editing this podcast. And Amber Beery for doing all the behind the scenes work to make sure it happens. And I finally want to say, as you go into your day today, I hope you will carry with you the peace that comes from believing that love is stronger than fear.