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Amy Julia (00:06)
I’m Amy Julia Becker. This is Take the Next Step, a podcast for families experiencing disability. We’ve teamed up with our friends at Hope Heals to bring you weekly conversations from fellow parents, therapists, disability advocates, all about practical ways to cultivate a thriving future for the whole family. Here at Take the Next Step, we see your family as a gift to our society and to our local community. Your family matters. Your child matters.
We need you among us. Today I’m talking to Jillian Benfield, author of the new book, Overwhelmed and Grateful, the key to finding God’s goodness in all life’s ups and downs. Jillian is a former journalist who writes about living an unexpected life. And she writes these days on sites such as Today, Good Morning America, Yahoo News, ABC News. And in addition to all of that, she is a mom to three kids, including her son Anderson, who has Down syndrome.
You’ll hear more about Jillian and her family as she talks with me today about parenting and caregiving, parenting and caregiving without burning out and discerning when to say no, when to say yes, what it looks like to live a life of gratitude while also acknowledging the hardship that can come. Before we turn to that interview, I want to let you know that I’ve created a free resource for you. It’s called 30 Next Steps for Parents.
It’s just a one page calendar that you can print out. It’s got 30 simple ideas. Each one takes five minutes or less to help you connect. This is connection with yourself, your family, and your community. So you can grab that through the link in the show notes. I would love to send it your way. One final thing before we dive into this conversation with Jillian, we are collecting questions for an upcoming question and response episode. So please click the link in the show notes, record your question, or you can send it by email.
we will respond to as many as we can. And now here’s Jillian Benfield.
Jillian Benfield, welcome to Take the Next Step. Thank you so much for being here.
Jillian (02:14)
Thank you so much for having me.
Amy Julia (02:16)
I am really glad you’re here today because you’re here both as an author and as a mother. And this podcast is particularly designed for parents. So I wanted to start just by asking you to give us a picture of your family with all of the challenges you face and all of the goodness you experience.
Jillian (02:33)
So we are a family of five. My husband, prior military, we’ve moved all over the country and we have finally settled on Florida space coast. And my husband is an orthodontist here. We have three children. The oldest is 12, that’s our daughter Violet. Our middle son Anderson has Down syndrome and our youngest Preston is in second grade.
Preston was born with a whole host of issues as well. So that’s kind of ⁓ what inspired this book was having, was that timeframe specifically. It was having a very medically complex infant as well as a toddler who has a disability and associated medical illnesses that come with that disability at the time.
plus behaviors that can also come with that disability. so it was just, that is kind of our origin story. We’re not exactly there now. Our youngest is very, you would never know that he had had all these medical issues other than the scars that he still wears from them. ⁓ However, there was a period of time where it was pretty dicey. ⁓ And honestly, it was pretty awful at points too.
And that’s when I came across this article between the two boys. had 18 specialists between them. And I came across this article after going to two different doctor appointments that day, one for each. And ⁓ it was this woman who was grieving the loss of her infant daughter and who also had just had the birth of her nephew happen. And her therapist asked how she was doing with that. And she said, well,
I’m really glad he was born healthy, but I’m still really sad about my loss. And her therapist corrected her and said, and you’re still really sad about your loss. ⁓ And that she said, you don’t have to choose. You don’t have to choose between these emotions. They can both exist. And that just really changed things for me. ⁓ It was this small little Facebook post that really started, it was just such,
an awakening for me that I didn’t have to choose. I could be really grateful that my youngest son held these shoes were not as bad off as the doctors led me to believe they could be when he, when I was pregnant with him. and I could also admit that this was incredibly hard because it was, and that’s what kind of shapes my perspective and then shaped this book, which is called overwhelmed and grateful. And it’s the concept of
being real about our hard things. And I think this particularly relates to parents of kids with disabilities because we do have extra challenges that come with raising kids, disabled kids in a non accessible world. ⁓ And keeping our eyes open to the beauty that is within our experiences as well.
Amy Julia (05:41)
Will you speak a little bit to that, just the experience we’ve heard already, some of the challenges that you’ve faced as a family. Will you speak a little bit, because you do this a lot in your writing, but to the beauty as well, so that we get a picture of that aspect of your family life.
Jillian (05:56)
Or, um, I mean, gosh, you know, my first book was called The Gift of the Unexpected, and it’s about how the unexpected has the opportunity to transform us into who we’re meant to be. And I really do believe that having my son with Down syndrome, um, honestly killed off some of the worst parts of me, um, and parts of me that needed to die and really taught me how to live.
⁓ he helped me deconstruct so many bad ideas I had about, ⁓ about faith, about worth, ⁓ about what success is and what that should look like and, ⁓ helped me build better ones. And so I, holy, we have these challenges raising a child with a disability and it is my greatest challenge and my greatest gift. Both of those things are true to me.
⁓ Because we wouldn’t be who we are as a family unit without Anderson, without this experience of disability. I see how it has shaped my children and how it has shaped us and how we choose to live in the world.
Amy Julia (07:09)
Thank you. And yeah, just to repeat, your book is called Overwhelmed and Grateful. And I suspect that there are many listeners who just hearing the title are saying, yes, yes, I got it. ⁓ And each chapter is a different kind of pairing of some emotion or experience with gratitude. And there was one that I wanted to hone in on for this audience and it was called Busy and Grateful. And I just want to read one.
⁓ portion from that chapter you wrote I didn’t realize that all of my guesses meant I was saying no to much I was saying no to rest I was saying no to being present with my kids when we finally had downtime in the day I was saying no to being quiet enough to discern where my heart was leading me so when I read those words I just resonated as a parent as and certainly as a parent of a child with a disability myself because we just so often find ourselves swimming in
paperwork and email responses and all just all the things to do all day long. So I wanted to ask you to just give some like thoughts on how you learned like to stop start saying no and what it meant to say yes to the things that you really wanted.
Jillian (08:22)
Yeah, so what really made me realize that was an old sermon. We were hosting a ⁓ Bible study at our house with people who all had kids, like very young kids, like we all had the same phase of life. And we were listening to a sermon series by Andy Stanley and it was from the 90s. I mean, it was like cheesy skits before the service. I don’t even know how he found it. But anyways, in the last part of his series about the starting the will of God, he talked about ⁓
He showed a puzzle box picture and how this is how we have to think about our lives and thinking about our lives like five and 10 years out. What do we want the picture atop this puzzle box to look like? And our yeses and our no’s should be discerned through that lens. Like if it doesn’t go into this puzzle box, then it shouldn’t, we should be saying no to those things. That’s how I interpreted the sermon. was a very long time ago when I watched it now. ⁓
But it really did start a fire in me where I realized like I was doing part-time PR work. I was a board member of a Down Syndrome Association and doing other things too, volunteering at the school. And I realized that I had to eliminate, I had to realize first what the vision for my life was 10 years out. And then once I got really clear on that, I had to start eliminating. And that was hard because I knew I was disappointing people.
⁓ you know, it was hard to step off of that board for the Down Syndrome Association, but I realized like I could not put the hours in that they needed out of me, to, and to also build what I needed to build in order to write books. And, so it, anyways, my point is, is to have a vision of what you want for your life, your individual life, and also your family’s life.
And if it does not fit into that vision, those are the things that we should be saying no to. Now I’m going to say there is a whole lot more that comes when your kids get older, I think, and opportunities that come. And it becomes, I think, even harder to say no as our kids get older. And I want to empathize with people on that point, especially as kids. We have kids with disabilities who have all these
specialists and appointments and things like that. ⁓ However, I think just keeping that vision of does this fit into my life? And if you can say if the answer is no, and it’s something you can say no to, go ahead and say no. And if the answer is yes, and it’s something you can say yes to, then try to say yes.
Amy Julia (11:08)
So you tell us a little bit about even the work of, ⁓ I think for so many people, there’s no vision. we, and I can include myself in this, sometimes get so caught up in the busyness that that big picture is really hard to discern, especially when our days are so full, as you said, of appointments and therapies and paperwork and whatever. Was there anything that you were able to do that allowed you to?
say, hold on, wait a second, like, where am I headed 10 years down the road? What do I want that puzzle picture to actually end up looking like? Like, how did you do that?
Jillian (11:46)
Yeah, honestly, it was a sit down conversation with my husband on our front porch with a paper and pen. yeah, really, I mean, it wasn’t anything formal, but it was just like hearing how he envisioned our family looking 10 years out and how he envisioned his career looking 10 years out ⁓ and me doing the same and realizing like for us, we wanted kids that would want to come back and visit us in 20 years.
And what does that look like building those relationships with them and with each other within our own household now? And so like family dinner, ⁓ know, four nights a week is something like, okay, like that’s something that that’s a yes for us and we’re going to make that happen. So just, just trying to see like, especially as you move on in life and people want you to volunteer your time.
And I think volunteering is great and I get so much out of volunteering. And also that has to shift depending on where my life is year year.
Amy Julia (12:53)
I I listened to a podcast maybe last year. It was James Clear and Peter Attia. So some of these like big guy, you know, having people. But they said something that really has stuck with me in thinking about these types of things. One of them, I don’t even remember which one said, you need to know A, B and Z. And so what they would mean by that is like, you need to know where you are right now. Like, you know, in your case, as you described it, like A was, I am overwhelmed. I’m too busy. There’s too much going on.
Z was that conversation with your husband in terms of like 10 years from now, what do I want this to look like? And sometimes we think we need to know everything in between, you know, like B through Y, like I’m like getting my alphabet correct there. And what they were saying is actually, no, you need to know A and Z and B, like just the next you want to take towards that good future. That was really freeing to me.
Jillian (13:44)
the next step.
Amy Julia (13:51)
when I was feeling overwhelmed, especially actually sometimes with things that come up with Penny, get overwhelmed at the prospect. Like when she was turning 18 and I was trying to navigate social security and whether we should become guardians and what’s a transition program look like and all of these questions. And what I started to do was just to be like, okay, like literally what is the one next step that I can take that is really small actually. And so I’m listening to you just being like,
sitting on the porch with my husband with paper and pen. Like that was the next step, even towards understanding what that vision might be. And then it sounds like you all did some work to be like, okay, the next step is on Wednesdays we eat dinner together or whatever night it was. And so trying to kind of break that down, at least for me, often makes these become less these kind of, I don’t know, sometimes the vision for my life adds to the overwhelm.
But what you’re saying is that there are ways in which that can actually help us to discern how to simplify and make the choices that we really want to make and just move forward towards something that is good for us and for others.
Jillian (15:00)
Yeah, and I think that vision doesn’t have to be super detailed. Like doesn’t have to be, I want to sell this many books. It can just be, I want to become a published author. Like, and break that down for whatever that looks like for you. Obviously that’s my example. ⁓ But I don’t think it has to be super specific, but just listing out those couple of things that really mean the most to you. There were probably five for us ⁓ when…
listing out our most important things for the next 10 years. That helped us, it really just gave me that filter, that yes and no filter. And I eliminating stuff pretty quickly. ⁓ And then, no, the next step was like, okay, then I guess I actually have to write this book now. You know what I’m saying? like, it’s like taking it, you’re right. It is looking A to Z. And then what’s the next step? The next step was starting to say no. And then the next step was
gosh, I have to learn how to do this. It’s just taking it, you’re right, A to Z and steps in between. That’s so good.
Amy Julia (16:01)
Yeah, that helped me a lot. also love what you’re saying because ⁓ you are both acknowledging the limits that are on your life and your family’s life while also believing that there are like good possibilities. And so I think sometimes we get either we are so insisting on the possibilities that we deny our limits or we are so aware of our limits that we think there are no possibilities. But what I’m hearing you say is like there’s actually a process that helps you.
say, as you said, it’s, I mean, you could probably list 20 things that you would love to be true in 10 years that would include serving on a board that helps people with Down syndrome. Like, why would you not want to do that? And yet when you’re like, but probably five is our max, we can’t actually do all 20. And so there’s just, again, that acknowledgement of both limitations and possibilities that I think is very human and really, really helpful as well.
Jillian (16:54)
Yeah, I think that what you’re saying is to kind of goes to the message of this book. It’s living in that and it’s acknowledging the challenges ⁓ and delighting in what could be possible. Both of those things are true. And I think that’s important when we ⁓ live our daily lives, but also when we look to the future.
Amy Julia (17:13)
You also in this chapter about being busy and grateful right about the difference between routine and habit and I found that very helpful so I wondered if you could just explain what that difference is and why it matters especially as we perhaps are looking to make changes.
Jillian (17:28)
Yeah, so a habit is something that our brain really likes. I think that like almost half of our daily actions are habits. ⁓ I think that’s right. Something it’s a very high number of our daily actions that are actually habits that we have instilled. habits are our brains easy button. It’s something that we have done so often like getting in the car and then you automatically put on your seatbelt. That’s a habit. But in order to create a habit,
you have to do something routinely. So habits are comfortable, routine is uncomfortable. So you have to be uncomfortable and saying, I’m going to do X every day as part of my routine in order for it to become habit. ⁓ An example of this for me is I realized probably during that time where I had the sick infant and Anderson, and who was also pretty sickly at the time.
I realized that I was a much happier person and a better mother when I exercised and I had always been an inconsistent exerciser. And so it was realizing like, Nope, like Monday through Friday, I have to spend 30 minutes moving my body before I really get into the meat of my day. And so it’s like doing that uncomfortable thing. And now I have to say, like, I don’t even dread.
working out because it is my, it’s become habit. I did it so routinely that now it’s like, this is just, we wake up, we have a cup of coffee, we work out, then we get the kids. Like that’s just how that goes. And trust me, I am not trying to push exercise on it. I think there is too much of that in this culture. That’s just something that works for me. but that’s the difference between habit and routines. You have to be uncomfortable and adding it to your routine in order for it to become more comfortable when it becomes a habit.
Amy Julia (19:24)
I really appreciate that. And there are so many things like that. And sometimes the habits that I’m the most comfortable with are ones that actually need to change. ⁓ And that involves a lot of discomfort too. And I think going back to what we were saying before, at least in my own life, I can pay attention to maybe one routine, one uncomfortable routine at a time. So there might be like seven different things that I think, gosh, I would like that to become a habit.
It’s not like they can’t all, but ⁓ I’m gonna probably be working on one at a time. And for me, things like I also needed exercise and was not getting it. And there were little kind of life hacks like putting my clothes in.
that I was going to wear to exercise in the morning in the bathroom where it was like, okay, I’m going to see them and put them on without thinking about it. Like the night before I was very motivated to exercise the morning of not as much. But if the night before I had put the clothes there, it actually helped be like, okay, I’m going to put them on and I’m not going to take them off until something has happened that involves my body.
Jillian (20:27)
Yeah, it’s like a trigger for your brain. Yes
Amy Julia (20:30)
Yeah,
totally. Well, I’m thinking about parents who are listening to this conversation and who are feeling both overwhelmed and grateful right now. And I’m wondering if you want to just leave us with one change or thought or step they might take that helps to both reduce busyness and take the next step towards a good future. And I know you’ve already said so many. So if you want to just even return to anything ⁓ as a summary of our conversation, that’s fine.
Jillian (20:56)
for this audience, for, our people, the people who are parenting or caregiving for someone with a disability. ⁓ I would say really, I think that this and lens has changed so much for me because, ⁓ what I say about raising someone with a disability is that it’s more, it’s more paperwork. It’s more advocacy.
It’s more effort and I feel very comfortable in saying that because I also have two typically developing children. When I have people be like, well, all parenting is like that. Well, yes. ⁓ And it’s more, it just comes with more. And so I think that acknowledging that what you said earlier, those limits, those challenges that are present in our lives and also knowing that somehow some way goodness is always present.
For me, I think that’s because God is always present and ⁓ finding ways to hold both of those throughout the day. For me, that is before I sit down to work in the morning, before I open my laptop, I pray over my and, my more and my and. And honestly, often that has to do with raising my son with a disability, that more part, those challenges. And we have a lot of those right now.
And so it’s admitting to God, to myself, those things that are weighing on me, that are worrying me. And it is intentionally looking for what is beautiful in my life right now. Even if it is opening my eyes and looking out the view out of my back door window and that’s what I have to hold onto, that’s a great thing to hold onto. But it’s like practicing that more, admitting you’re more on it, being honest.
and being grateful. It’s honest gratitude is what I call it. And I think that that is something to help us move forward. And then just one more thing, because I knew we were going to talk about this question. I think that when, if you have young, younger parents listening, I think when you get thrust into the disability world, you feel like you have to do it all. You know, you have to do every single therapy and all of these things. And it’s okay to
to not say yes to all of those things for our children. It’s okay to do the thing that maybe say yes to one thing, one therapy, ⁓ because honestly, they probably need a break, you probably need a break, and it’s okay to think about your child as a whole person and not just their disability ⁓ and your family as a whole family unit too. ⁓
Amy Julia (23:40)
I so appreciate those words. And yes, that’s still true, but my gosh, I wish I had had that wisdom when Penny was three years old and I had a whiteboard in my kitchen with the 72 things I was supposed to be doing daily. And I felt so overwhelmed. ⁓ yes, that is one ⁓ word I would give to a younger mom too, is like, just pick one thing.
and work on that and let and otherwise. And, you know, even within that, enjoy, enjoy your child and your time together. And thank you so much just for the work that you do. We will certainly make sure in the show notes to link to that. am a subscriber to your newsletter and I receive just some both fun and thoughtful wisdom from you on a regular basis. I’m grateful for that. I’m grateful for the books that you’ve written. We will also just link to.
this new book, Overwhelmed and Grateful. And thank you for all that you’ve shared here today.
Hmm, well, the thanks is mutual.
Thank you so much for joining me here at Take the Next Step. This show is produced in partnership with our friends at Hope Heals. And if you don’t know it already, Hope Heals is a nonprofit that creates sacred spaces of belonging and belovedness for families affected by disabilities to experience sustaining hope in the context of inter-ability communities.
couple quick reminders before we close. One, if you haven’t already, grab your free resource, 30 Next Steps for Parents, just by clicking the link in the show notes. Simple calendar, five minute practices that help you connect with yourself, your family, and your community. We are gathering your questions for an upcoming question and response episode. So again, click the link in the show notes, record a question, send it by email. However you want to get it to me, I would love to hear from you and to really start answering your questions.
which leads me to tell you about our upcoming episodes. have Eric Carter, Professor Eric Carter from Baylor University talking about belonging. We have Down Syndrome Advocate and Lucky Few founder Heather Avis here to talk about the light. And Matt Mooney, one of the founders of 99 Balloons is also going to join me for that question and response episode so that we have the perspective of a dad ⁓ and a disability advocate and scholar in addition to my perspective.
So as we come to a close, I’m always going to ask you to follow the show, to rate it, to review it. That all helps more people know that this resource is available to them. Even better, share it with someone who you know might need this conversation. And finally, you can send questions or suggestions my way. Just tap the Send Us a Text link at the end of the show notes or email me amyjuliabeckerwriter at gmail.com. I want to thank Jake Hansen for editing the podcast.
Amber Beery, my assistant for doing everything else to make sure it happens. I hope you leave this time with encouragement to start with delight, connect to community, and take the next small step toward a good future with your family.
