Ellie Ledin (00:00.756)
Hey all, welcome back to another episode of the Inheritance of Hope podcast. My name is Ellie and I'll be your host today. I'm joined with someone really special whose story I think will be just so sweet and impactful and inspiring. So without further ado, take it away.
Shelby Akers (00:20.558)
Hi everyone, my name is Shelby Akers. It was Shelby Lewis. I recently got married within the past year, so things look a little bit different for me. But I was a past family served with inheritance of hope and I have been volunteering and been active. I did an internship with them in college. for a good chunk of my life, I would say I kind of bleed IOH. So there's a bunch of different identities I have with the organization.
Ellie Ledin (00:46.922)
Hmm.
Shelby Akers (00:50.512)
but I got started as a family served.
Ellie Ledin (00:53.532)
I love that. feel like I want to unpack those different identities and I feel like you've probably grown and changed so much from the first time interacting with Inheritance of Hope till now. So yeah, guess what, man, I have so many different ways I could take this, but how did you first get introduced to Inheritance of Hope and then in what ways was your family served?
Shelby Akers (01:18.893)
Yeah.
So my family first got involved in 2014. So we did a legacy retreat to New York. And so at the time, my mom is actually kind of crazy. We got involved with IOH, our retreat was in November and the month prior was when we found out my mom's cancer diagnosis had came back. And so it was kind of this crazy like within a month whirlwind of we were very confident in the beginning
they, the doctors had given her, like a 97 % chance of staying in remission. And so we were kind of like, shook out of nowhere when, you know, October, 2014 comes and she had stage four metastatic breast cancer at that point. And so that was kind of just a what, what's going on, moment. And then one of her providers actually recommended IOH and submitted our application.
for us and so that's how we kind of got involved and there just happened to be a legacy retreat the next month and so we were like, do you want to go do this? And we're like, I mean, yeah, sounds great. This sounds wonderful. But it was, it was definitely a weird month of just lots of crazy life changing things happening.
Ellie Ledin (02:32.202)
Thank
Ellie Ledin (02:38.652)
Yeah, no kidding. And then you said your mom ended up making a legacy video as well, is that right?
Shelby Akers (02:45.868)
Yeah, so we got introduced to the concept of a legacy video and all of the different aspects of that at the time. And she did make one while we were on our retreat. She later took a lot of the resources that we got from like our little IOH packet of, you know, like letter writing and journaling and other like legacy tools. But on the retreat, she did record a video. So it's really wonderful. was our retreat, which is probably helpful for context.
was myself who I was a sophomore in high school at the time and then my little brother who would have been in third grade I believe and then my mom and my stepdad.
Ellie Ledin (03:31.06)
Okay, wow. So being in high school, what was that like to navigate so much at, you know, I mean, a young age, essentially, like that was on top of dealing with everything else. What was that experience like for you?
Shelby Akers (03:48.054)
Yeah, I it was really difficult. I actually just shared about this this week with some I did a training for college counselors like high school counselors who support students in their college transition. And so we were talking about adverse childhood experiences and trauma and how you know some students that they will interact with have so many things going on in their home life that they have no idea and like
the compound of like trying to go into college and like make those big life decisions when you're 16, 17, 18 years old, compounded with what's going on at home can be really stressful for students. And so when I shared with them, some of the biggest heartaches and trials were, you know, not having a community at the time that I thought people within, you know, physical distance that I could go over and connect with was really hard just because they didn't understand.
what my life looked like and then also and this plays in to a little bit later of kind of my experience with IOH and my story with my mom but when my mom
got re-diagnosed in 2014. At that point, she was in very intensive medical treatments. And so she obviously couldn't work. And so we went to like a one income household. And so like the financial strain of like on my dad of really a lot of pressure to, know, he has to do great at his job and he can't miss work because, you know, these things that to make sure he could provide for our family. And so in turn, a lot of that caregiving role fell to me.
Ellie Ledin (05:22.505)
Yeah.
Shelby Akers (05:32.676)
And so later on in life, I would be very thankful for what came out of that. But at the time, especially trying to apply for college and be in high school and do all those things like coming home and helping post-chemo visits was really hard. And just being real, like it sucked for like two years, but it was just kind of what our life experience was like at the time.
Ellie Ledin (05:52.851)
Yeah.
Ellie Ledin (05:59.019)
Hmm. Yeah, and I think a unique thing with the high school adolescent age is that there's so much independence or desired independence, but still so much reliance on caregivers. So then to be then put into almost a caregiving role as you yourself still need, you know, that caregiving, that is such a
Shelby Akers (06:19.726)
Yeah.
Ellie Ledin (06:26.332)
a strain on kind of like the ideal what should be. And I'm sure, like you said, there's beautiful lessons that came from it and like maybe intimacy with your family in a way that you didn't have before. But yeah, just a lot of hardship. yeah, go ahead and.
Shelby Akers (06:44.653)
Yeah.
Well, one of the things I shared last week was, know, we were talking about choosing colleges with the group that I was with. And when they were putting like why students might choose a college like a major or, you know, like they love the beach, so they might go to a beach school or like whatever that might be. You know, I shared with them, I was like, I loved my undergrad institution, but I chose to go there because it was an hour from my parents house and I still like, I
home every weekend to care give and I took my mom still to all of her appointments and like did all of those things that you know selfishly.
at the time my 17 year old was like no I would have loved to go to a different school that I had like my heart set on but you know when I left high school I changed like my identity from being a high school to a college student but my role as a caregiver didn't change and so I still had to like think about how would I be there for my family and then honestly balancing a lot of guilt too of you know all of my friends at the time were talking about how excited they were all to
to go off to college, but I felt very guilty because at the time our...
Shelby Akers (08:02.892)
Doctors and medical team were like, you this is terminal and we're to do everything we can for you to talking to my mom, like spending as much time as you can with your kids. But like you do need to live in the reality that this is, this is going to come to an end at some point. And we're just hoping that that end is a ways away, but like you still need to know that. And so having that like knowledge and people telling us that over and over, I was like, okay, well how can I choose to go off to college and like,
Ellie Ledin (08:18.538)
Mm-hmm.
Shelby Akers (08:32.866)
have these wants as a child knowing that my mom was going to pass away at some point. And so like that was something all through high school that I really struggled with and struggled with that like competing roles of like being a daughter and having like a child and childhood and then knowing that like I am in this caregiving capacity.
Ellie Ledin (08:35.38)
Mm-hmm.
Ellie Ledin (08:54.826)
Mm-hmm. Yeah, and what's interesting about this podcast is that with inheritance of hope we serve each member of the family, right? And I think I'm not sure that all organizations do that. I think inheritance of hope does that really well. And so with this podcast, my hope is to get perspectives from each member of the family, you know, because I've had a lot of interviews with the diagnosed person and of course their world is
Shelby Akers (09:05.655)
Mm.
Shelby Akers (09:11.054)
Mm-hmm.
Ellie Ledin (09:24.18)
flipped upside down, they have all these things to consider, but there are, like the spouse is now a caregiver and like single income earner, the kids' lives are completely changed. So I so value the perspective you're sharing because I know this is the story of so many people and to like hear you sharing this will hopefully, I know, make other people feel less alone in this.
Shelby Akers (09:33.954)
Mm-hmm.
Shelby Akers (09:44.546)
Thank you.
Shelby Akers (09:52.204)
Yeah, I, we...
touched on in the beginning, like different roles within IOH. So like, obviously being a family member served, like that was my first one, but then turning in and going into being a volunteer when I turned 18, that like what you just talked about of, know, hopefully that someone gets something out of our experience. Like that was the reason that I decided to start volunteering because I, well,
One, our legacy experience was amazing. Like I have friends that I'm still friends with now, like created lifelong relationships. Like it was wonderful. But then on the flip side, I was like, I really do feel like not cockly or thinking too highly of myself, but like, I do feel like I had something to give to families. And especially like when I would go into serving on her treats, like my prayer would always be like, Lord.
let a mom find peace or a dad in the situation, but I primarily was with moms, was like, let a mom find peace that like through me, they could see that their kids will be okay. Because I was okay living in that very difficult reality, both, you know, before my mom passed away and after my mom passed away.
And so, yeah, I think that was always a prayer for me and something that I continue to pray for, especially when I was very heavily in my, my IOH volunteer days.
Ellie Ledin (11:26.608)
Yeah, that is so key. I want to hang on to that thought for a minute with letting other people know like your kids will be okay. Like look at me as an example. I am okay and I lost my mom kind of thing. And what do you think that would provide to a parent who knows that their kids are gonna, you know, keep on having to go on without them?
Shelby Akers (11:51.436)
Yeah.
I mean, I think it can be a lot of things. I, you know, when you were just saying that like they're going to be okay, I do think that there is that reassurance and like, you know,
The reality of losing a parent is in the grief process, like however long that takes, like there was a point where I really felt like I wasn't gonna be okay. And like I really struggled and like it was a really, really hard time in my life through multiple different lenses. But then I am now like at the point where I can say like, I am okay. And like, I'm able to like share that I'm finding joy and happiness in other aspects of my life.
While grief is still a part of it and it will never go away, it's no longer dominating my experience. And I think being able to share that with families is really helpful. I also think that, you know, when I first started volunteering, there was a like core group of young adult volunteers. And there might still be now, I'm old.
Ellie Ledin (13:05.075)
Yeah
Shelby Akers (13:06.062)
I still fall into that category, for three or four years while I was in college, there were like...
12 of us who were in college and had experienced the same things and like we all volunteered together and that was a huge like community community building aspect for me but then like also I think families could see that that like this organization it isn't just okay we're going to be here for three or four days or do a hope at home you know retreat where they will build relationships but like those relationships like we plan to come on retreat so that we can spend time together and like
Ellie Ledin (13:28.071)
Mmm.
Shelby Akers (13:43.938)
When my mom passed away, like three of the people that were in my friend group, like they drove to my mom's funeral from like, I lived in North Carolina. we're like Florida and DC and Atlanta and like all these places that.
Ellie Ledin (13:52.809)
Wow.
Shelby Akers (13:59.906)
you know, if we think about it from a time perspective, like I'd only seen them maybe a month of like physical presence, but they spent all of this investment of their time and their resources to come and be there for me because we had created that relationship. And I think getting to show that to families and provide that hope that there is the possibility for that kind of connection, I think is really helpful. And I hope it's helpful. I have.
Ellie Ledin (14:05.235)
Yeah.
Ellie Ledin (14:27.495)
Shelby Akers (14:28.024)
talked to families I've served in the past and they have said it was helpful, don't want to make the assumption that it is for everyone.
Ellie Ledin (14:34.922)
Oh, I could totally see that because I think with inheritance of hope, serving young families facing the loss of a parent due to terminal illness. I mean, yeah, there's that range. Like they could have kids from zero to 18 and you were on the older scale of that. But for the families who have like a two or a three year old or, you know, some kids that are really young to get to see almost like a
Shelby Akers (14:52.994)
Yeah.
Ellie Ledin (15:02.3)
a vision into the future of what their kids could experience, even in the midst of grief. I'm sure grief pops up all the time. When you lose someone, it doesn't ever just go away. You will always be reminded of your person and always feel that tang of grief. like you said, experience joy in the midst of that, joy almost outweighs the hardship, even if the hardship is still present.
Shelby Akers (15:07.182)
Yeah.
Shelby Akers (15:15.662)
Ciao.
Shelby Akers (15:31.63)
Yes, yeah, I agree with that 100 % and like, you know.
being able to be around, like talking back to one of the things I struggled in high school with of not having that connection of people that understood my experience, but then volunteering and then later having that community because the community didn't go away. Like when we left the legacy retreat, like we still text and send each other TikToks and do, you know, all the connection thing, but like they understand that if I'm having a bad day or, you know, I just don't
don't want to do a certain things because I knew it would be a trigger for a grief experience. Like that was okay and there was no judgment there. And that's, it's wonderful because that's not something that everyone has. And I think it's a, it's one of those, like we provide families with IOH like.
what I think of tangible legacy resources. Like here you can make your video, can, you know, here are activities you can do with your family, like those things, but then those are the untangible things that we can't physically give someone, but that we do give them is that opportunity for connection.
Ellie Ledin (16:44.586)
Yeah, definitely. And that's all, you know, what we kind of preach, especially like in our, well, honestly, in all of our resources and services, but just the community of other people who get it, where you don't have to give the context because they're already in that same context. And they understand all of the nuances, even if you don't verbalize them.
Shelby Akers (17:00.974)
I'm honey.
Ellie Ledin (17:13.17)
Yeah, and so I, for a time, I was a facilitator in our Hope at Home groups, the online support groups for women with metastatic breast cancer. And a lot of the women I was in those groups with had that diagnosis for years. And so for them, a lot of it.
Shelby Akers (17:20.223)
Mm-hmm.
Ellie Ledin (17:33.116)
wasn't just like you have this diagnosis and your life is gonna end and it's going to be soon. Like some of them had it for like 10 years and in that whole time you're navigating chemo, doctor's appointments, insurance and I think the biggest thing was this anticipatory grief of like my life is nowhere near normal anymore but I'm still around and so I'm curious what was your mom's
Shelby Akers (17:38.286)
No.
Shelby Akers (17:50.435)
no.
Shelby Akers (17:54.711)
Yeah.
Ellie Ledin (18:02.227)
journey with metastatic breast cancer light.
Shelby Akers (18:05.006)
Yeah, and you know, I'm actually really glad you mentioned that because there's a couple things that I think people don't think about. So my mom originally was diagnosed with breast cancer in 2012 and she had stage one and we did all of the all of the things and then they came back and said this was great you're in remission you have 97 % chance of nothing coming back. Fast forward less than a year and she was at stage four.
and was terminal at that point. And, you know, but they were very committed to like, if there's a medicine out there that is feasible, like we're going to try it and we're going to try and extend. So she got her stage four diagnosis in 2014 and then she passed away in 2020. So she had six years of that kind of like very intense diagnosis.
And we ended up doing a clinical trial at the National Institute of Health. And so that was another extension on our time of six years prior when she was diagnosed. That wouldn't have been an option, but it was later. so.
Ellie Ledin (19:17.033)
Hmm.
Shelby Akers (19:20.8)
you were mentioning the reality of anticipating grief coming. That was definitely an aspect, but I think something that my mom struggled with more was like, I don't know if there's a term coined for this, like grieving what she's already missing. So at that point,
Ellie Ledin (19:26.217)
Thank
Ellie Ledin (19:45.159)
Mm-hmm
Shelby Akers (19:48.812)
when I was in the beginning of college, leaving high school, the things that my mom wished she could have done when she was healthy and anticipating that those things were coming of driving to come see me if I couldn't come home a weekend or doing those extra things, like helping with move-in day and the things that take a physical...
well-body at the time. Like I think she grieved a lot of like, you know, I'm here and I'm so thankful to be able to be emotionally present, but I feel like I can't be physically present. And so I think she like grieved those experiences while still like living with them was something she struggled with. And I think another thing that,
Ellie Ledin (20:27.657)
Hmm.
Shelby Akers (20:38.63)
I struggled with, but it was through her experience was, we mentioned that like, she did her legacy video in 2014, like right after she was diagnosed. And I was so thankful towards the end of her life for her doing that because when she was first diagnosed and having that metastatic, like very long period, I think she was like more willing to set up things for us like legacy.
Ellie Ledin (20:50.697)
you
Ellie Ledin (21:08.635)
Sure.
Shelby Akers (21:08.644)
like the videos and cards and things, but like as she got to the end of her life, she felt like to do that felt like giving up and like, okay, now I'm doing this for real, for real. And she didn't want to do it because she was so scared that like, if she did that.
Ellie Ledin (21:17.481)
Mm-hmm.
Shelby Akers (21:27.694)
like cancer is a lot of it is a mental game as well as like the physical aspect. And she was so scared that she was gonna like lose her mental game if she did that. And so I really wished and I like asked her the last couple months of her life, I was like, will you please just like even if it's just 10 seconds of like saying like, I love you or doing something so that I can have that later on. And she just, she wasn't able to do it from like a...
Ellie Ledin (21:30.962)
Yeah.
Ellie Ledin (21:37.257)
Hmm.
Shelby Akers (21:57.248)
emotional standpoint, like she wasn't able to do it at that point. And I'm so glad that she did our legacy video because that is like the only like audio recording, video recording I have with my mom at this point.
Ellie Ledin (21:58.803)
Right.
Ellie Ledin (22:11.881)
Wow. Yeah, and we hear that all of the time of people, you know, if I do this, then that means I'm giving up. Even I hear that a lot with like hospice. If I go into hospice, that means I'm like calling it quits. And I think that's a common misconception, but especially like for legacy videos or any legacy building, it makes people come to terms with the fact.
Shelby Akers (22:27.373)
Yeah.
Ellie Ledin (22:38.141)
that we all are going to die and maybe my time is coming and then that's a lot to think about. So what a gift it is that she did that. Even if you wish that there would have been maybe a second one years later, but just to have it on camera and legacy video is so cool because you don't just know what the person thinks about you and these stories, which is so important.
Shelby Akers (22:51.857)
Yeah.
Ellie Ledin (23:07.079)
you have their actual voice and then it's like a video so you see their mannerisms and their quirks and things. What if you don't mind sharing, what did your mom share in her legacy video?
Shelby Akers (23:09.096)
Amen.
Shelby Akers (23:20.352)
Yeah, I'm, I think it's funny that you were just talking about what, you know, like it's not just their voice, it's these other things too, because like in her video, I don't know if IOH does separate ones now for like individual, like people of the family. Like if my mom would have wanted to create one just for me or just for my brother, like, I don't know if that's an option. So she did like, okay, great. Yeah. So,
Ellie Ledin (23:45.307)
Yeah, we do. Yeah.
Shelby Akers (23:49.536)
At that point, which gosh, like 11 years ago now, it was just one video. And so like, she kind of divided like, okay, Evan, I'm talking to you and Shelby, I'm talking to you. But then she also like included a section on just things about her that maybe wouldn't have come up in our conversations together of like, you know, what was your relationship like with my grandpa at the time who's also passed away. So was like, we couldn't have gotten that information.
from him or, you know, what are things from your childhood that like, it would have never come to me to ask like what her boyfriend in high school was like, you know, but like those things that now like, man, like I'm so glad that she said those things that weren't to us, like what she wanted for our future or anything like that, but it was more insights to who she is.
Ellie Ledin (24:28.937)
You're right.
Shelby Akers (24:44.15)
And so I loved that part. There was also like where she did talk directly to us. And, you know, she...
My mom was very, I know I always just think is be very intentional about what you do because your actions matter and your legacy matters. And so my mom was very intentional naturally. And so like in her video, like for me, she shared like very specific experiences or things about me that she loved, like that had already happened. And she's like, you know, the way that you handled this situation, like
Ellie Ledin (25:15.625)
you
Shelby Akers (25:21.836)
makes me like so proud of you or like, love this aspect about you and you did it in this way or like, you know, which was so comforting and wonderful to hear. But then she also like talked about things that were in the future that she might not have been there for. And some of them like she was like me going to college. Like she mentioned like wanting to see that and she did cause her diagnosis was so long, which was a blessing. But then.
Ellie Ledin (25:45.286)
yeah.
Shelby Akers (25:50.24)
there were other aspects that like she didn't get to see so I am
a very like lovey romance, love a good romance book kind of person. And so like my greatest desire in life was to always like have a family and be a wife and like have my own family. And she knew that and knew that that was probably a reality that she wouldn't get to see. And so she was very intentional. She was like, Shelby, like.
Ellie Ledin (25:59.891)
Mm-hmm.
Shelby Akers (26:21.41)
this is what I want for you and a husband one day. And like, these are the attributes that like I see in you that I think you would want in a spouse. And then like, she very specifically like talked to whoever my future husband would be. And she's like, you know, these are the things that like, it's gonna make me cry. She's like, these are the things that, you know, like if I was here, I would want you to do for Shelby, like help her around the house or do these like, you know, things that show her that you love her because this is how Shelby receives
Ellie Ledin (26:34.09)
Wow.
Ellie Ledin (26:44.895)
Hmm.
Shelby Akers (26:51.374)
love well and just getting to have that and you know my legacy video my brother watched his maybe a year after my mom had passed but I waited like
four years after my mom passed to watch her video because we, like I mentioned, like I didn't have anything else. And I was so scared that if I watched the video that at that point, like my birthday cards, my mom had wrote me and my like, just because cards and things like that, I had already opened them. And so like, this was my last thing of my mom that was new. And I felt like...
Ellie Ledin (27:27.434)
Hmm.
Shelby Akers (27:33.654)
If I watched her video, like everything about her at that point would be a memory and I wouldn't have anything new. And so I like, couldn't bring myself to do it. And I was getting ready to get married and like two weeks before I looked at my now husband, I was like, Luke, I think like, I want my mom to be part of our wedding. And so I want to watch this video with you. And he was like, okay, sounds great.
Ellie Ledin (27:38.526)
Hmm.
Shelby Akers (28:01.334)
And so like we watched it and it was wonderful and horrible and the sense that I was crying so much, but it was so good. And you know, so many mixed emotions that like you feel at the same time. And like he cried because he's like, I feel like I got to meet your mom because she talked to me and like these things that were just so special. And so like, I really felt like in the moment it was the Lord.
Ellie Ledin (28:06.761)
Mm-hmm.
Ellie Ledin (28:15.889)
Yeah.
Shelby Akers (28:25.994)
And selfishly I thought of my mom too because like I still probably wouldn't have watched the video because I was so scared to watch it. But like I really wanted her to be involved in that aspect of my life. And I'm so grateful because like.
Ellie Ledin (28:31.369)
Hmm.
Shelby Akers (28:39.712)
Luke got to hear those things before we got married. And like, it was just this perfect, like, my mom knew me so well that she was like, no, like, this is gonna be a part of like what means most to you. And so even though it's not about you, it is about you. And like, I wanna include that in her video. And it was just so sweet.
Ellie Ledin (28:42.397)
Hmm.
Ellie Ledin (28:57.097)
Wow. You got me crying, girl. That is beautiful. That's probably one of the most quintessential stories of a legacy video that I've heard. Because your husband got to meet your mom and your mom spoke directly to your husband without even ever needing to meet him. She just knew you so well.
Shelby Akers (29:01.067)
I'm sorry.
So good.
Shelby Akers (29:17.877)
Yeah.
Shelby Akers (29:26.124)
Mm-hmm.
Ellie Ledin (29:26.323)
that she could speak for you. What a gift. That is so matronly. To know your child so well and to advocate for them and for her to do that so far in advance is beautiful.
Shelby Akers (29:32.097)
Yes.
Shelby Akers (29:40.32)
Yeah, and it was funny because like there were parts of that that aspect of the video where like She's like, I know you're gonna be funny. Like I know you're gonna be very like these different characteristics and Luke was like Okay, this is so weird and I was like, no, it's not weird because she knew that like
I wouldn't pick you and you wouldn't pick me and like the Lord wouldn't put us together like if if we weren't meant like and matched in this way and she knew by loving me like what those characteristics would be and I was just like okay Hope sorry my mom's name was Hope I was like okay Hope I see you up there
Ellie Ledin (30:13.289)
Wow.
Ellie Ledin (30:19.027)
Doing her thing, wow. Yeah, what were some of the things where you're like, that is spot on. Like, this is who I'm marrying and this is who my mom said I would marry.
Shelby Akers (30:20.31)
Everything.
Shelby Akers (30:29.61)
Yeah, one of the things, like being funny and like having a sense of humor. And then she was talking like about, you know, she's like, I know that Shelby is a very much a caregiver. And I was like.
foreshadowing hope. I know that Shelby really likes to take care of people and so she's going into want to you know, like take care and do like household things and like, she's like, but you are going to feel like you want to provide for her and you have to like, you know, lovingly be like, Shelby, let me do this for you. And like, Luke does that all the time. And I was like, it's just so like, it was just those moments. It was like, okay.
Thanks, like, and it really was just this affirmation at the time when, you know, like, even though I was like, okay, this is the person I'm gonna marry, like that's still a huge life decision. And like to have a parental figure like still give me that like affirmation that I didn't even know that I needed or wanted, but it like came as this blessing was huge.
Ellie Ledin (31:24.669)
Yeah.
Ellie Ledin (31:36.69)
Yeah, and obviously, you know, like you said, not having anything brand new anymore, like the legacy video was kind of the last thing to me, like hearing that story feels like worth the cost of getting to experience that with your husband. And like you said, like you didn't know that was in there. You didn't know she was going to be talking directly to him. So to experience that, it feels like a divinely orchestrated thing that you decided like, OK,
Shelby Akers (31:51.777)
yeah
Ellie Ledin (32:05.949)
we're gonna watch this video before we get married and it was so fitting. What are some ways that you still incorporate honoring your mom, remembering her, even if it's not a brand new experience, how do you navigate that?
Shelby Akers (32:08.814)
We'll do it.
Shelby Akers (32:24.43)
Yeah, there are ways that I have done in the past and the ways that I still do. I think
volunteering and being a part of IOH will always be a way that I get to honor my mom. like, even when my mom was still alive, like that for me was, you know, I still went on retreats and served and I feel like I'm at like 15 retreats at this point maybe. So yeah, like I took a little break after her passing because I was like, I'm not helpful to anyone in this state, but.
Ellie Ledin (32:48.86)
Wow.
Ellie Ledin (32:57.128)
Great.
Shelby Akers (33:00.32)
Yeah, I think serving on those retreats and the things that, you know, get to come out of it. And then I think like I still definitely learn, learn things about myself and my relationship with people and the Lord, like through serving. My mom was a very spiritual person. And so I think that aspect of like the Christian lens that IOH does have is an honor to her and her legacy in that way.
One of the things that, and I don't remember if it was something that I always recommended or if it just like was a, was a hope, hope moment, but like my mom was very worried that like, maybe worried's not the best word. I think something that she very valued was, you know, like,
Ellie Ledin (33:40.072)
You
Shelby Akers (33:56.91)
her relationship with the Lord and then like my relationship and my brother's relationship with the Lord. And she was, know, it made her so sad to think that as we went through life that she wouldn't get to be there to be like spiritual guidance for us because that was such a huge aspect of what brought her peace and joy. And so,
Ellie Ledin (34:10.985)
Hmm.
Shelby Akers (34:18.504)
she before she passed, she was like, okay, Shelby, here are five women in your life that like, if you need a godly mama or a godly woman to go look to, like, these are the women that I want you to like feel comfortable doing. like three of them were like people from IOH, like that I had just met like through volunteering and like.
Ellie Ledin (34:27.657)
No.
Ellie Ledin (34:38.025)
Mm-hmm.
Shelby Akers (34:42.51)
Jill Thompson, who's amazing, and Kristi Steiner, and Lisa Hunter. And she was like, these women are good, the godly women. And if you need, if you're struggling with something spiritually, like go to them because I trust them with your faith and I trust them with your, like walk with the Lord, which was so sweet. And so like maintaining those relationships and like.
Ellie Ledin (34:57.001)
Mm.
Shelby Akers (35:05.856)
you know, still pursuing the Lord and serving in different ways, I think is always honoring to my mom because she wanted that for us so badly. And then there are other like little aspects too that are not as, you know, not not as something that happens on a daily basis or as often, but those I think are the big ones that you're just like every time it happens, I'm like, OK, I love you. And like this is my way of showing I love you, even if you're not here.
Ellie Ledin (35:12.137)
Hmm.
Ellie Ledin (35:34.505)
Yeah, what are some of those smaller things? Not that they're small, but the last day today.
Shelby Akers (35:39.788)
Yeah. My mom was huge on birthdays. And so like really going, okay, now like, we're gonna eat cake, like we're gonna really celebrate a birthday. And like, this is a way that because that's something that like she valued and she honored and like.
Ellie Ledin (35:52.094)
Yeah.
Shelby Akers (35:57.582)
I try and do something on Mother's Day that like gives back to people instead of like just sitting in my grief because I know that that's not good for me and like that's not what she would want. So like one year like I wrote Mother's Day cards to all the moms and IOH who had metastatic breast cancer and like one year I went and volunteered at like a women's shelter and so like being intentional on certain days when I know grief is going to be harder and try and do things that honor her.
in that way makes grief a little bit easier. Yeah, and I think just I do like try and do legacy things for the people that I love.
now because like she really did like she left us so many cards and like birthday notes and things that are so special and so like being able to do that for other people I'm like okay this is this is a way that I get to love other people the way that I was loved so deeply.
Ellie Ledin (36:58.985)
Yeah, I love the thing that you did writing cards to all the women with metastatic breast cancer. I'm sure it's such a treat for them. And then, yeah, like you said, kind of a way to channel the grief from just sitting in it like a pool that you're gonna drown in compared to like, okay, this is something that I can channel for...
Shelby Akers (37:18.414)
I'm home.
Ellie Ledin (37:23.859)
good and to like come alongside other people who are also grieving and together we might feel a little less alone.
Shelby Akers (37:30.184)
Mm-hmm, yeah. It is, I think that's like, you know, with my mom passing and with her being so sick and like taking on that role of caregiving and like especially the last couple months of her life was when COVID happened and you know, we...
weren't able to have hospice care because of the regulations with COVID. And so it was like, I took on like all of the end of life care for my mom. And so a lot of things happened in that experience that like all of that shaped kind of my walk with the Lord. And.
You know, I feel like the Lord reveal through all of that has revealed like two or three like really powerful things that have shaped my spiritual journey. And one of them being like at the end of the day, we just want to be seen and heard and known for who we are. And like that's an inherent characteristic of being children of God. And like that's why we want to be in relationship with Jesus and all these things. But I do feel that like everyone feels
Ellie Ledin (38:30.185)
Mm-hmm.
Shelby Akers (38:42.202)
that way and so being able to like, like you said, and even if it's in small ways, like be that for someone, like seeing them and knowing them and like sitting with them in their joy or their pain is just, I think a gift that you can give other people that can't be overstated, I guess. It's a good one.
Ellie Ledin (39:01.479)
Yeah. Yeah. And so I want to ask you this because a lot of times we hear people want to help but don't know how when a young family is facing an illness like yours has. What are some things that people have said or done that were not helpful? And then what are some things that were helpful? I'm sure you have a list.
Shelby Akers (39:10.027)
And then.
Shelby Akers (39:21.196)
Ooh. Yes. Yeah. The not helpful ones, I think, are things that, like, one, people probably think of, and then other ones are like, my gosh, I can't believe people would do that. But you're like, yeah, they would. But I think one thing for my mom was, like, when she did fill up to going somewhere, like if we went thrift shopping or, like, she was having a good day and we went out to eat, and, like, people...
I hope with good intentions and not just because they're nosy, but I think people are inherently can be that way. Like every time they seen her would want like an update on how she was doing. And like that just became so exhausting of just like it, it came from a place of like wanting to check in. But if every person, every time is like making you relive what's going on and the difficulties can be really, really hard.
Ellie Ledin (40:17.865)
Mm.
Shelby Akers (40:21.287)
And so I think that was a big thing.
There are also, I say that there were a lot of tough things, but there are also a lot of really good things. We lived in a very small, tight-knit, like mountain community in North Carolina. like, just people being willing to just love freely was so huge. So like, you I know that not everyone has the financial means to like...
give like money or like to give like a gift card to a restaurant or things like that. But that was like the people that did that were so helpful, especially on nights when like we, my mom just didn't feel good. And it was like, okay, well we're just gonna go pick up barbecue or whatever. Cause we have a $20 gift card someone gave us. Like that was so helpful. But then also people that like, were like, Hope, if you just want like Shelby and Evan to go do something fun, like we will take them. Like they can come with our kids and like,
Ellie Ledin (41:07.433)
Mm-hmm.
Ellie Ledin (41:20.583)
Hmm.
Shelby Akers (41:23.054)
go river tubing or we'll go do something where like my mom didn't feel like she had this guilt of holding us back from like childhood experiences and someone like was able to provide that for her I think was a huge huge thing that was really helpful.
Ellie Ledin (41:25.607)
Yeah.
Ellie Ledin (41:42.057)
Well, especially like what you were saying earlier of kind of honestly being robbed of some childhood experiences not to anyone's fault I'm sure like there was a lot of emotions to navigate and I'm maybe resentment or bitterness was in there but like you know it not to anyone's fault were you like intentionally robbed of these things so for other people to kind of see that and fill that gap of
Shelby Akers (41:53.09)
Yeah.
Ellie Ledin (42:09.478)
You still deserve to have a fun childhood with new memories and lighthearted experiences as you're going through dark, heavy things. It's just, I think, a good reminder to anyone listening, because we will have plenty of listeners who are not sick. They're not part of medically complex families. So I hope that anyone listening doesn't just feel like, I can't say anything. I can't do anything because I don't know what to do. It's like...
Shelby Akers (42:13.66)
Well.
Shelby Akers (42:26.125)
Yeah.
Shelby Akers (42:35.649)
Right.
Ellie Ledin (42:36.616)
Just invite the kids along for a pizza night and a movie night or some it doesn't have to be big. That's the thing.
Shelby Akers (42:40.96)
Right. Yeah, it's like one of my favorite things was like we went out to ice cream, which was like so just like a frivolous thing to do just like go get ice cream. And I was like, man, this is so nice. And like, you know, just and it was another thing where I
Ellie Ledin (42:54.268)
Yeah.
Shelby Akers (42:58.446)
it being that carry-over capacity, I didn't feel as much guilt, because I was like, oh, well, it's only like 30 minutes. It's not like, oh, I'm going to be gone for a whole day, and now I'm feeling this guilt of being gone. It's very small. for people that have belief systems or a faith system that helps them, my mom had a 1990s pager.
Ellie Ledin (43:26.6)
You
Shelby Akers (43:27.234)
thing that had a number on it and people when they were praying for her could call the number and it would just beep. And so she didn't feel like she had to talk on the phone or give people an update, but it let her know that someone in that moment was actively thinking of her and actively praying for her. And that was huge. like...
Ellie Ledin (43:34.376)
you
Ellie Ledin (43:45.64)
Wow.
Shelby Akers (43:49.318)
You don't have to, you just like give people the number, right? Like it's just, okay, if you want to pray for me, because a lot of times people did that too of like, you know, how can I pray for you? Like, let me pray for you. And we always wanted that, but it was also another like, okay, I don't want to be like, please pray for no nausea or please pray for whatever. Just like, if you're praying, like this is a great way to let us know that you're doing that.
Ellie Ledin (43:51.964)
Mm-hmm
Ellie Ledin (44:13.01)
Hmm. That's a great idea. I haven't heard that before, but it takes away the emotional baggage of every time you just were trying to be out and enjoy a day, people are stopping you, asking you for updates, needing to know just kind of as a nice barrier where it's like you're still caring for us, but we still have a personal space in life outside of sickness and stuff.
Shelby Akers (44:17.538)
Yeah, it was good.
Shelby Akers (44:35.563)
Okay.
Yeah, and it was a nice reminder too of like, I think there are times, especially when you were talking about moms or dads or whoever who've had this diagnosis for a long time, where it becomes like, okay, the reality that someone's just sick.
And so it can feel like people kind of forget that too. And so that was another way of just going, okay, we've not forgotten, you're still on our prayer train at church and every Wednesday at 6 p.m. we're gonna get a beep. So it was nice this day.
Ellie Ledin (45:13.032)
Yeah, well, I want to get to this before we wrap up our time together, but I think you have such a unique perspective. Like I said, because we offer services to every member of the family and we hear a lot from, you know, the sick parent. I want to hear from you. Maybe if there is a parent right now who has terminal illness and is listening to this, what would you want them to know? And then
Shelby Akers (45:17.592)
I mean.
Shelby Akers (45:25.859)
Yeah.
Ellie Ledin (45:42.042)
Also on the flip side, like, what would you say to the kids who are like in this caretaking role? I guess I just want to give you the microphone of like whatever you want to say you can say right now.
Shelby Akers (45:52.128)
Yeah, yeah. okay. Let me think about that one for a second.
Shelby Akers (46:02.272)
I think from a parent lens, like if I was talking to a diagnosed parent, I think, like I mentioned earlier, like if you are in any way...
listening to this. Like if you're in any way thinking about what your children are going to experience like currently or one day in the future, like you're already doing the work of showing them that you love them. And so like don't feel like discouraged or like you're not doing enough or any of these things because like
Just my mom having those conversations with me and taking the time to do the things, like infinitely showed me how much she meant to me. in relation to that, selfishly, I also don't think you can ever say those words to people enough.
Ellie Ledin (46:59.624)
Thank
Shelby Akers (47:03.638)
I'm getting my doctorate at the moment, so my academic research brain, research shows us that it takes 62 times of hearing people say something, whatever it might be, for it to move into long-term memory. And so like...
Ellie Ledin (47:19.41)
Wow.
Shelby Akers (47:21.632)
Obviously, like we hear, love you all the time, right? But those things of like, you, like you are so thoughtful or like things that you would want your kids to know that you want them to know that you know, like just even if you seem weird or your kids think you're weird, like just keep saying it over and over again. One of the things that like stuck out to me the most with my mom, cause she said it over and over again.
was, you know, especially being in that caregiver role, if any parents out there have children who are having to step up to the plate to be in that capacity. Like my mom said, no matter what happens, no matter if we have a bad day, no matter if we get an argument, like you did everything you could to make me feel loved. And like that has been so reassuring for me that like.
Ellie Ledin (48:10.056)
Hmm.
Shelby Akers (48:14.602)
my mom knew how much I loved her and I knew how much she loved me. And like, just cause she was very intentional about like communicating that with me. And then for kids or young adults that have been in that caregiving role, I think two things that I would say is like, it is okay to feel guilt or resentment or these like,
emotions that we associate like negative things with because that's just part of the process and like you know we were never if you have faith like we were never designed to feel these things like they are hard and like we can recognize that they like suck and like this was not the way it was supposed to be and like just giving yourself grace to live in those feelings
Ellie Ledin (48:48.518)
Yeah.
Ellie Ledin (49:02.632)
Mm-hmm
Shelby Akers (49:12.62)
you know, like it's gonna be okay. And like, don't beat yourself too hard. Don't beat yourself up too much when those hard things happen. And then I think the other half of that is like...
Ellie Ledin (49:19.176)
you
Shelby Akers (49:28.598)
really invest in those relationships, not just with your parent or the person that you're caregiving, but like the people who are gonna be there for you if your parent passes. Because like I really struggled after my mom passed that like...
I'm so thankful for my IOH community I had, my physical, in my accessible community, I poured so much of my life into caregiving that then after she passed, I was like, I have this gap in relationships where it's like, people love me, but I don't have that person really that I can go to and like.
Ellie Ledin (50:01.928)
Mm.
Shelby Akers (50:09.964)
be with because I've neglected those relationships. So like, if you have the capacity, like still be able to do that and be there with other people because you're gonna need that one day.
Ellie Ledin (50:13.544)
you
Ellie Ledin (50:20.776)
I love that. I feel like I just want to give you the microphone for hours and you should write a book about this and like people could learn so much from what you have to say. So I like hate to cut the conversation short, but for the sake of time, I'll just move on to our last question. Is we ask every
Shelby Akers (50:25.422)
You
Shelby Akers (50:38.925)
You have.
Ellie Ledin (50:42.12)
guest on the podcast whose legacy has impacted you in a way that you still carry on their life and legacy in the way you live.
Shelby Akers (50:53.358)
I mean, obviously my mom hope like the way that she modeled, you know what she wanted for us and like her relationship with the Lord like different aspects of who she was has then led into my life and like Doing a legacy video that she could talk to my husband like these were things that like have been so impactful but I do think that there are other people when we think about legacy like
It's not just after people pass. I think it's what people do in the present. And so I mentioned one of the women that my mom was like, okay, if you need spiritual guidance, like go to them, is my friend, Lisa Hunter. she like, I moved to a new city and she just happened to be in that city after my mom died, like living there. like her just like...
pursuing the Lord through me in the way that like she opened up her home and she was like, anything you need, like I'm gonna be there for you. like, which being 100 % honest at that point in my life, I was probably a little hard to love. Because I was grieving really hard, but like she took up that like.
Ellie Ledin (52:02.344)
Yeah
Shelby Akers (52:07.924)
mantle that I feel like the Lord put on her to love me and she did it so well. And so like I will always be thankful for her in that like area of my life. And like the Lord has put other people in my life who have done the same thing, but just like tangible things of like you are living your legacy. And like when we pass, we get to be thankful for those things, but it's those things that you are really doing now that set people up to show them that you love them later.
Ellie Ledin (52:20.232)
Thank
Ellie Ledin (52:35.942)
Yeah, well, I love that. Thank you so much for spending some time sharing about hope, your precious mom and the legacy that she leaves. It's so sweet to see how that experience and that relationship shaped you to be who you are and being a leader in this conversation. So thank you.
Shelby Akers (52:56.6)
Thank you.
