Ellie Ledin (00:01.026)
Hey everyone, welcome back to another episode of the Inheritance of Hope podcast. We have a special guest with us today with a great story. So why don’t you introduce yourself to everyone who’s listening.
Micah Douglas (00:15.169)
Hi everybody, I’m Micah Douglas. I’ve been involved with Inheritance of Hope since I think 2017 my family got served. I’m 22 years old. I currently live in Savannah, Georgia. I’m stationed on Hunter Army Airfield. I work with the 75th Ranger Regiment. I’ve been here about almost a year now. I’m originally from Utah and lived a couple of years in Minnesota. So it’s nice to get on here and talk with you, Ellie.
Ellie Ledin (00:41.806)
Yeah, I also didn’t know you had a stint in Minnesota. I am currently in Coon Rapids, like close to the Twin Cities. Where were you?
Micah Douglas (00:51.381)
We were just north of Rochester, so about an hour south of the Twin Cities.
Ellie Ledin (00:54.36)
Okay.
Nice. Okay. Yeah. So probably a little bit different than, you know, Georgia winters.
Micah Douglas (01:02.389)
Yeah, no, that… Yeah, it doesn’t get very cold here. I’m wearing shorts throughout the entire winter.
Ellie Ledin (01:08.138)
Yeah, my gosh. Well, I’m really excited to chat with you today because obviously you have kind of a variety of experience to talk about, whether being the family search, but also like you’ve volunteered a ton. You’re very involved in different programming. And I know other members of your family are. But I realize as we were planning this podcast that
you recorded my legacy video. Do you remember that?
Micah Douglas (01:40.603)
Yep, I do. Yeah, my mom I was talking to my mom about recording this podcast with you. She’s like, do you know Ellie? I was like, yeah I’m pretty sure I recorded her legacy video and that’s how we met so
Ellie Ledin (01:49.748)
Yes. Yes.
because you were legacy video coach and you were about to leave for the military right as I was starting on the legacy video team. So we didn’t overlap much, but before I started as, you know, managing the legacy video team, I recorded a legacy video and yeah, you were great to work with. It was a great experience, but you probably have like a pretty good insight into my life. I don’t know if you remember anything I said, but I just remember like it’s such a great
Micah Douglas (01:58.668)
Yep.
Micah Douglas (02:11.679)
you
Ellie Ledin (02:22.352)
experience to the legacy video captures the season you’re in and so yeah we have a little bit of a background but um I would love to hear how illness has been a part of your family and what that journey has looked like for you guys
Micah Douglas (02:40.458)
Yeah, so my dad was diagnosed with ALS in December of 2015, I believe. I was probably 13 years old. I had younger siblings, so have a younger brother who was three years younger me, so he was 10 at the time, and a younger sister who was five years younger than me, so she was eight about the time, and then an older brother who was 16. And…
I can tell you the first initial time hearing that my dad had ALS, we all sat down in the living room. I think we had a family counselor at the time she was there. Our pastor from church was there and we all sat down in living room and we don’t have family meetings very often. So it was, it was a weird experience. And I was just thinking in my head, was like, man, what, what is going on? Like there’s all these important people here. And like when my parents were about to break the news to us that my dad had been diagnosed, they even mentioned
that Micah has probably noticed this the most. I was like, wow, I have no idea what we’re doing here. And so they broke the news that my dad had ALS. The reason they said that I probably noticed it the most was I was working outside with my dad a lot before that and he would do weird things. Like we’d be shoveling the driveway and he would like fall over and stumble. And I’d be like, dad, man, you’re getting old. Like you get 40 years old and you can’t even shovel the driveway. And so that’s why they thought I noticed the most, but I had no idea.
Ellie Ledin (03:57.792)
Yeah.
Micah Douglas (04:02.616)
And honestly was it didn’t feel super real at first because like you get news like that and you’re like It didn’t affect our lives too much then but very quickly ALS started to affect our lives We ended up moving from Utah to Minnesota. That’s where most of my parents families from so Within six months we picked up we finished the school year picked up that summer and moved to Minnesota. So initially we got uprooted and sent all the way to Minnesota
soda and I gotta pause I don’t know what I’m about to say I have no idea where I was going with that the question was part of our journey okay what what else should I say with that
Ellie Ledin (04:38.542)
you
Ellie Ledin (04:48.75)
yeah, maybe like, yeah, how things progress. Cause I know you said it didn’t initially feel like it changed that much, but then kind of like what happened next and then yeah, kind of where your family is now.
Micah Douglas (04:56.746)
Yeah.
Yeah.
Micah Douglas (05:05.93)
Okay. Yeah. right. right. Time line. I’m just gonna write down some notes really quick.
Ellie Ledin (05:13.644)
Yeah, definitely. And this platform uses AI and it is so simple to edit. like, yeah, pause as much as you want and need.
Micah Douglas (05:22.954)
Perfect.
Micah Douglas (05:53.367)
And then I’m going look at the questions you’re going to ask after that way I don’t like add stuff in that we’re going to answer later.
Ellie Ledin (05:56.886)
Yeah.
Ellie Ledin (06:08.086)
And feel free, like, in this first question if you want to at least hint at when you found out about Inheritance of Hope and what that story looked like. Otherwise, I can just ask a follow-up question after you. Okay.
Micah Douglas (06:20.424)
Okay, I can talk about IOH right now. Yeah. I’ll like add, I’m doing like a timeline.
Ellie Ledin (06:26.104)
Sure.
Micah Douglas (06:44.522)
Alright, should just pick up where I left off or restart?
Ellie Ledin (06:47.854)
I feel like if you maybe pick up from like moving to Minnesota, that would be good.
Micah Douglas (06:59.782)
of the sentence I left off on.
soda.
So while we were in Minnesota, my dad’s illness progressed pretty quickly. Probably within that year, he was in a wheelchair. We renovated our entire upstairs to be wheelchair accessible. We had a lot of family that came over and helped build ramps, renovated the whole upstairs. And I think we started, I started eighth grade there and my dad’s illness continued to progress. And I kind of had to step into a role of being a part-time caretaker for my dad.
because my mom was our full-time caretaker but every once in a while my mom wanted to take a break so I would spend a lot of my nights coming home from school I would do practice whether it wrestling practice I’d come home make sure my dad was fed make sure he did a trial drug and my older siblings didn’t like or my older brother didn’t like plugging in IVs and stuff into his port and so I took over that role doing his his medicine and there was just a lot more responsibility
that was placed upon me and my siblings as my dad’s illness progressed. And one thing I noticed too is my dad doesn’t always like to ask for help. So you kind of have to see a need and meet a need was a big motto through our family, right? Like if you saw that he needed something, you just had to go do it because he was never going to ask you to come help him. It took him probably a couple of years before he was like, all right, I can’t do this. I need you to come help me. So that was big jump for
Micah Douglas (08:34.872)
for my dad to get over. pretty shortly after my dad was diagnosed, my mom started researching a lot about resources that are available to families like us. And that’s when she stumbled across inheritance of hope. And she didn’t tell any of us about it. She just applied to go on a legacy retreat. And I think it was 2017.
Micah Douglas (09:04.534)
probably was March 2017 we went to a legacy retreat in Florida when my mom told us about it I was kind of a crabby teenager and I did not want to go like at all I wasn’t I’m not super big into amusement parks and stuff like that so it wasn’t like oh I really want to go to Disney but
Yeah, I didn’t want to go because it wasn’t just a trip where you go and have fun. Mom told me we going to be in groups with other kids. I was like, I don’t want to talk to anybody. But I went on the trip and it was a life changing experience.
Ellie Ledin (09:32.43)
Right?
Micah Douglas (09:42.057)
I at first didn’t want to go to any of the groups, but I went to the groups, worked through the curriculum that they go through, and I bonded with other kids that are facing similar things. There was actually a couple other ALS families with kids my age, and so I got to relate with other kids about some of the same struggles that we’re going through. Because back in Minnesota, I was at a small school, 80 kids, none of their parents had ALS. None of them knew what I was going through. I could explain it to them, but until you’ve actually experienced doing some of things you have to do when you’re
Ellie Ledin (10:04.302)
Mm.
Micah Douglas (10:12.02)
when your dad’s sick like…
showering my dad or cleaning up after he’s used the bathroom. Like those aren’t things that normal teenage kids have to do. And I always provided this area with other kids. Even volunteers have dealt with the same kind of things. And it kind of helped you see that you’re not alone and there’s other people going through the same kind of journeys you are. And it actually taught my family pretty good lessons about building our legacies. We weren’t super good at taking pictures before.
IOH trip and I can tell you now we’re still not as great as some people but we do take a lot more pictures and we have memories from that trip that’ll last a lifetime.
Ellie Ledin (10:48.43)
Yeah.
Micah Douglas (10:59.274)
We ended up moving back, so we spent four years in Minnesota and we ended up having some, my parents were having some problems with our support system in Minnesota. They were thinking things weren’t working out very well, so they actually decided to move back to Utah and get some support from our church family and our friends out there. And I was a 10th grader at the time, and when my parents told me we moving back to Utah, I was so mad.
Like, I was, yeah, I was not okay with the move. I was like, you guys already uprooted me once, moved me all the way to Minnesota, I made friends here, and now you want to move me all the way back to Utah. But in the long run, it ended up working out really well. My parents got the support that they needed. And in retrospect, it was a good move and everything worked out. But my dad ended up passing away in 2020.
Ellie Ledin (11:29.643)
Ugh.
Ellie Ledin (11:39.438)
Hmm.
Ellie Ledin (11:52.76)
Hmm.
Micah Douglas (11:58.999)
And yeah, towards the end, things were getting a little rough, especially because we were in the COVID kind of era of things. it made going out harder. Church moved to online. Seeing friends and family wasn’t the easiest. And my dad had a lot of health complications towards the end. So he was in the hospital and they wouldn’t let us visit because they could only have one visitor. And so the last year was pretty difficult. He ended up going on a breathing machine.
Ellie Ledin (12:06.158)
Yeah.
Micah Douglas (12:30.218)
But I think just leaning on our church family and all the support that we had around us, we got through it. So that’s kind of the timeline.
Ellie Ledin (12:41.496)
Yeah.
Man, I mean the more stories and interviews I’m doing for this podcast, that’s such a recurring theme of, okay, illness, like ALS especially is difficult enough, but then everything in the COVID era just, my goodness, kind of made things so much worse and so much heavier and complicated. so I’m really sorry that you had to navigate all of that. That’s a lot to go through.
Micah Douglas (13:09.364)
Yeah.
Micah Douglas (13:13.302)
for sure.
Ellie Ledin (13:13.616)
Yeah, and it’s interesting. It feels like you were, you know, a teenager who obviously most teenagers aren’t like in full support of moving and trying new things. But that’s kind of interesting to hear you say like in retrospect, especially the legacy retreat, like how impactful that was and then being uprooted not once but twice.
Micah Douglas (13:27.413)
Yeah.
Ellie Ledin (13:40.716)
Yeah, what were those transitions like for you personally or for your entire family?
Micah Douglas (13:48.383)
so initially I think the move to Minnesota for I think was the hardest for me initially. My older brother wasn’t super plugged into his high school and my younger siblings were young enough where it didn’t really matter to them yet. And so transitioning wasn’t too hard.
But then moving back, think, for both my little brother and me was super hard because we had built a big community of friends in our school. We’re really active in the school. And moving back at that of high school age was really tough. It was a pretty smooth transition moving back to Utah because I still had friends there from when I lived there. And I knew the church that we were going to. So I was able to get plugged back in to friend groups and stuff like that. And then for my mom, it was
this.
a life changing move for her. Like she was having a lot of difficulties in Minnesota with just relationships with other people and getting the support that she needed. Moving back for her was like she didn’t have to ask people were there and it made it a lot smoother, especially through that those later years of ALS when it gets harder and harder. And if it’s not working out where you were like there had to have been a change. But I think the legacy retreat for my entire family was
was an awesome experience. My older brother, he, I don’t think he any gripes about going, my younger siblings were like, heck yeah, we’re going to amusement parks. This is awesome. A couple of memories that we have from the legacy retreat. I didn’t even know about this, but I guess one of our volunteers took Luke to the pool and he ended up running off and they spent like two or three hours
Ellie Ledin (15:17.944)
Yeah. Yeah.
Micah Douglas (15:38.731)
find him and like we’re scared to come to my parents and be like yo we lost one of your kids and so hearing that in after the fact was funny because I think me and my brother were just chilling in the room with my parents and had no clue that he was missing another one was and shout out to our volunteers I think we had some of the best volunteers I’m gonna blink on their names right now
Ellie Ledin (15:40.109)
no.
Ellie Ledin (15:45.294)
no.
Ellie Ledin (15:56.767)
no.
Micah Douglas (16:05.194)
but they ended up, my dad was in a full-time powered wheelchair and we were going on the Space Mountain ride and my dad had said he wanted to go on the ride and we all thought he was joking and man, I’m so mad I’m blanking on the volunteers names. They’re like, yeah, we can put you on the ride. And he’s like, all right, let’s do it. And they literally picked him up out of his chair, put him in the roller coaster, sat behind him and held his head and we went through Space Mountain.
And which is, yeah, if you ask any of my family members, they’ll probably say that’s one of their favorite memories from our legacy trip. So.
Ellie Ledin (16:36.051)
my gosh.
Ellie Ledin (16:40.12)
Yeah.
Ellie Ledin (16:45.392)
do you feel like that story just kind of captures your dad’s personality or was that a little out of character?
Micah Douglas (16:50.934)
No, that’s that’s a hundred percent my dad like he He was he was always doing something like before he had ALS. He was working full-time He’d go to racquetball in the mornings. He’d get off work drive to wrestling practice He was our coaches for all of our sports Like I’m surprised that dude slept ever and so him wanting to go on a roller coaster Even though he can’t lift his arms or support his head was was entirely him. So yeah
Ellie Ledin (17:11.904)
You
Ellie Ledin (17:20.022)
Wow. that’s so cool.
Micah Douglas (17:20.872)
And my mom was so mad about it. She was like, that was a dumb decision.
Ellie Ledin (17:26.534)
my gosh. my goodness. Well, and I’ve been on that ride too, and it’s a very shaky ride. So if you, if you had to like hold someone’s head up, would be a lot of responsibility. my gosh.
Micah Douglas (17:37.044)
Yeah, know it was a lot of responsibility. But our volunteers were awesome and I think that’s the best thing about IOH is the volunteers will make your trip exactly how you want it. They’re gonna put in the pieces where they need to be and it’s gonna be an awesome time.
Ellie Ledin (17:54.828)
Yeah.
well, I love that story how you said, you know, that’s his personality. And even though ALS probably stole a lot of things from him and honestly from your whole family, seeing that some of those things didn’t change, they just made it look a little bit different. man, talk about a legacy and just this like key memory to sum up, you know, who your dad is and have a have a laugh every now and then.
Micah Douglas (18:05.034)
Mm-hmm.
Micah Douglas (18:20.746)
Yeah.
For sure, for sure.
Ellie Ledin (18:25.97)
so okay, tell me a little bit about the transition after you went on that legacy retreat. Was it a pretty immediate response of like, I want to do something with inheritance of hope or what was your journey into transitioning to like volunteering?
Micah Douglas (18:44.502)
Yeah, for me, I don’t think I volunteered with IOH until after my dad passed away. So I know my older brother and mom were like immediate, like, I want to volunteer. And I think you to be 16 to sign up to volunteer on a legacy retreat. So my brother was already old enough. I don’t think I was. At the time I was like 14 or 15. And so like that kind of hindered it. And then I think for me wanting to volunteer was seeing my
older brother and mom come back from these legacy retreats with the same like Rejuvenation that we got on our legacy retreat. I was like, yeah, that’s something I want to do and knowing that if my dad had the opportunity to volunteer he’d be volunteering and he would want me to volunteer as well and when I went on my first volunteer legacy retreat I instantly hooked like every retreat that I could go to I would go to and it’s
It’s an awesome experience to give back and help kids.
in the similar situation that I was in. Like, I know for sure that there’s plenty of teenagers and even younger kids that are like, I don’t want to go on some trip and talk to these people. Even I think it was the North Carolina retreat. I had this family, the Tolentino family, their son, they said that he was really shy and reserved. And I ended up getting him out onto the dance floor, dancing with everybody and just seeing the look on their parents’ face with me dancing with his
Ellie Ledin (20:02.456)
Mm-hmm.
Micah Douglas (20:21.981)
their son out there was was worth it all.
Ellie Ledin (20:25.205)
Yeah.
Well, what’s funny about that is I actually had interviewed Miguel Tolentino, the dad in that family. And, you know, he was just talking about before Inheritance of Hope, he was, you know, had more anger and wasn’t expressing his emotions about his wife being sick and just kind of really closed off to the idea. And then the legacy retreat was just literally life changing for him. And he seems like, you know, him and his kids were so different.
Micah Douglas (20:31.358)
Okay.
Ellie Ledin (20:56.248)
and he named you specifically. He was like, yeah, our volunteer, Micah, like kind of our kids were just in the shell. And then afterwards they like kept wanting to throw the eggs and were trying to like take other people’s eggs to throw them and just named you specifically. So it’s so sweet to like hear, you know, both sides of the same story. And
Micah Douglas (20:58.294)
You
Micah Douglas (21:16.394)
Yeah.
Micah Douglas (21:19.934)
Yeah, I know it was awesome. actually was, I left for Army Basic Training right after that weekend. I asked my recruiter, I was like, hey, can I push my leave date one week? And he was like, yeah. And so was able to go on that legacy retreat. So that’s, that’s amazing.
Ellie Ledin (21:35.096)
Yeah, yeah, because I think you were a huge part of making that retreat so enjoyable and life changing for the Tolentino family. So what a blessing to kind of push back your date. Yeah.
Micah Douglas (21:48.842)
Yeah, for sure. Yeah, no, that’s awesome.
Ellie Ledin (21:53.248)
And for a while, I know before you went into the military, you were a legacy video coach. I know the legacy retreat is like the big flashy thing that inheritance of hope offers because, you know, you go to an amusement park and it’s this huge once in a lifetime thing. But I would love to hear your perspective on something like the other resources that inheritance of hope offers, like legacy videos that’s more about
Micah Douglas (22:04.95)
for sure.
Ellie Ledin (22:23.312)
the scenes, more personal, less public, but like what was your experience and what were some of the stories that were really moving for you as a coach?
Micah Douglas (22:33.92)
Yeah, so I was a legacy video coach for a short since time. I think it was like six months. the thing I love about legacy videos is like for the IOH retreats, it’s focused on families. Wow. These legacy videos are for everybody, right? Like you don’t have to have a family. you could be young, old. It doesn’t matter, right? You can, you can leave this, this awesome gift, for your loved ones.
And that’s probably my favorite part about the legacy videos is it doesn’t matter who you are, you can make this video. I’m trying to think of some specific stories.
take a pause. I know, I’m trying to think. I recorded… Yeah, yeah, I recorded yours. I recorded one for a family I served in St. Louis.
Ellie Ledin (23:16.844)
I know it was probably a while ago, yeah. Besides mine, of course.
Micah Douglas (23:41.142)
Yeah, if I’m honest, don’t- can’t recall any stories for that.
Ellie Ledin (23:43.904)
Okay, no, that’s fine. Do you feel like there’s any kind of takeaways of like not necessarily specific people sharing things, like the general, the fact that they could share certain things with family or even if it’s not like what you recorded as a coach, but like just how meaningful legacy videos are in general?
Micah Douglas (24:06.74)
Yeah.
Micah Douglas (24:13.916)
Okay, I could do this. I could talk about my dad’s legacy video. Yeah, that’s perfect.
Ellie Ledin (24:17.441)
sure, yeah, that’s great.
Micah Douglas (24:24.096)
Yeah, okay.
So yeah, legacy videos are the skip that can be left. So my dad actually, they record, used to record legacy videos on the retreats. And so my dad actually recorded a legacy video on a retreat. And to be honest with you, I didn’t know that he recorded one for a long time. I remember my mom’s like, oh, you should pull up your dad’s legacy video. was like, dad has a legacy video? He’s like, yeah, you haven’t seen it? I was like, no. And I actually have it saved on my computer and I watch it from time to time.
Ellie Ledin (24:49.21)
Micah Douglas (24:55.454)
because it just encapsulates my mom and dad are in it. His personality getting to hear his voice again is awesome and especially because he’s pretty goofy in his legacy video he’s cracking jokes with my mom and it’s this awesome thing that I can come back to.
Ellie Ledin (25:07.906)
Mm-hmm.
Micah Douglas (25:16.788)
when whether I’m down like my dad used to be the guy I’d go to for advice and so anytime that I want to make a big or I’m going to make a big decision or contemplating things I pull up his legacy video even though he’s not giving me specific advice it reminds me of the advice that he would probably give me in this situation and the ability for anybody to get on and make a legacy video is awesome I know that all of your loved ones I would greatly appreciate the legacy video it’s an awesome gift that is
free to do and it’s easy to do. just gotta click a link, send an email or something like that and…
Ellie Ledin (25:49.057)
Mm-hmm.
Ellie Ledin (25:52.62)
Yeah, yeah, you just are sent an email, you click a link and the coach handles everything else.
Micah Douglas (25:58.615)
Yeah, and that’s another part that I love about Legacy videos is you put in very little effort, the coach is going to walk you through everything. It seems like a scary, daunting thing, but once you link up with the coach and they explain everything, you’re going to see how easy and carefree that the experience is.
Ellie Ledin (26:15.758)
you
Yeah, and one thing I hear a lot about from people who have lost their person or whether or not they made a legacy video is how quickly you can forget someone’s voice. like, you know, I’ve talked to people who they hadn’t heard their person’s voice in like 10 years and they just didn’t have any recordings and then they found some and they bawled because it’s such a gift to hear your person’s voice. And so that’s so sweet with legacy videos.
do you just hear their actual voice but like you get to hear their personality come out and have you know specific messages for you know their loved ones so that’s just I yeah I can’t get over how special legacy videos are hmm yeah
Micah Douglas (26:53.088)
Yeah.
Micah Douglas (27:02.9)
Yeah. Awesome.
Ellie Ledin (27:07.086)
what would you say to someone who’s hesitant about trying inheritance of hope, whether as a family to be served or as a volunteer or a donor? Like, what would you want them to know?
Micah Douglas (27:21.654)
activity a first-hand account first-hand account that i didn’t want to go on the legacy retreat at all
Like I was so against it like I did everything to try to get out of going on the trip with my family Which sounds horrible, but I was such a rotten little teenager that it didn’t matter. I was like I don’t want to do that I don’t want to do that and I was even like we got on the plane we got there and I was still mad until After probably like the first group I was like, oh this isn’t so bad and then as we got through the trip It started to be this awesome experience that I still talk about with my friends. I wear IOH shirts I get questioned about it all the time and I
Ellie Ledin (27:37.39)
you
Micah Douglas (27:59.913)
I have no problem telling people how awesome inheritance of hope is. So I know things can seem daunting and scary at first or like why choose inheritance of hope, but I’m telling you as soon as you use any of the resources that IOH gives you, you’re gonna understand exactly why you should go through inheritance of hope. And that is one thing as a legacy video coach, I noticed a lot of people were hesitant to make videos even when I got on the call like, I don’t know what to say, I don’t know what to say.
Maybe we’ll do it later. But as soon as we get done with the video, they’re like, wow, that was awesome. That was easy I’m so glad I did this and I’ve never had anybody be like, I regret doing this so
Ellie Ledin (28:31.63)
Mm-hmm.
Ellie Ledin (28:41.068)
Right. Yeah, I hear that a lot too of it’s hard for sure. It takes, you know, emotional energy and some vulnerability and kind of makes you start thinking about your own mortality, which most people don’t want to do. But just doing it and sitting down for 30 minutes or even less than that is, it’s kind of takes this huge weight off of your shoulder once you actually do it. So.
Micah Douglas (28:57.803)
Right.
Micah Douglas (29:10.783)
for
Ellie Ledin (29:10.86)
Hmm.
Yeah, and one thing I really love about Inheritance of Hope is exactly what you pointed out at the beginning of this, where you move to a school, a new place, and nobody was in the same situation as you. People were in the same classes, but the home life was so different. No one else was probably doing everything that you had to do and taking care of their dad and giving him medicine. But with Inheritance of Hope and some of the community you found,
people were in a similar situation. So what would you say to someone who maybe is a teenager or in a similar stage of life as you, who doesn’t have that community and doesn’t really know anyone else who is experiencing the same things? Like what would have been helpful for you to hear?
Micah Douglas (30:03.734)
I think I think one of the
big things for me would be I’m gonna go back to IOH here but IOH has groups that meet every week like the young adults group, teenage groups and stuff like that we’re gonna meet those similar people and if I would go back in time I would tell myself like hey join this group there’s gonna be people in there that are going through the same things you can share similar stories and relate to them because you probably aren’t gonna meet that many people in your
your school or in your sports or in any of social groups that are experiencing the same things and that’s what IOH does is create this big community of people that are going through the same thing and people that are
for one, Christ-based, right? Because church and Christ has been the cornerstone of my family making it through these hard challenges. And being surrounded by other like-minded people and people that are strong with Christ is gonna help you through those experiences. So yeah, if I could go back in time, I would make sure I’m joining the groups every week and getting plugged into the IOH community because it is a life-changing thing.
Ellie Ledin (31:20.846)
Yeah, I love that there’s groups for kids, for teenagers, for the diagnosed parent, the spouse, even groups for life after loss. Like, there’s so many niche-
groups where it’s not just like, you’re in this general bucket. It’s like, no, people are experiencing a very similar phase of life. So it can kind of speak to it without needing to explain all of the context that other people might not understand.
Micah Douglas (31:43.126)
Yeah.
Micah Douglas (31:50.527)
Right. And I want to mention too for like the teenagers and younger kids, it isn’t always just going in there and talking about illness and sickness and stuff like that. Sometimes we go in there and we play games and just hang out with people that are going through the similar things and they’re a lot of fun. So it’s not just always like, I’m dealing with this, this, that. There is that, but we also just go in there and play games and hang out and you get to make friends that you might not have made. So it is an awesome thing.
Ellie Ledin (32:18.318)
Yeah. Well, and I’m curious to learn more about…
You you’ve been through a lot and you said you’re 22, right? So, I mean, even in 22 years of life, like that’s a lot to navigate. Were there ever any times when you were angry at God or wondered if he cared or was even there? And like, yeah, just speak on that.
Micah Douglas (32:48.381)
Yeah, but…
plenty of times I would I was very angry with God like like he’s an all loving God how can he be doing this to to my dad to my family why me and you kind of go through this it’s a it’s like the the snowball effect right you have one thought and it just goes to another another and you get like the so woe is me and what really helped me through that honestly was for one like getting plugged into IOH seeing that other people are going through the same thing and have these same questions but also my
Ellie Ledin (33:06.083)
Mm.
Micah Douglas (33:20.138)
dad was the one actually experiencing this illness and ALS is a horrible illness you you stay purely mentally there but your body just starts to deteriorate and he was so for Christ the entire time I was like my gosh like he doesn’t have this woe is me attitude and that’s ultimately what was like yeah like and reading
The IOH book. Who wrote the IOH book? Chris Milligan. Yeah.
Ellie Ledin (33:51.732)
Kristen Milligan’s, yeah, consider it pure joy.
Micah Douglas (33:56.757)
Yeah, Consider a Pure Joy, that book is awesome. If you guys haven’t read it, you should read it. But yeah, God puts us through trials and tribulations, puts us in, she calls it the forge. And that’s what it is, right? It’s like you’re going through these trials and tribulations and it’s gonna be hard to gain that perspective but the more you seek after Christ and seek after like-minded people that are Christ-like, you’re gonna make it through them,
Ellie Ledin (34:26.072)
Yeah, that reminds me, I need to pull this.
quote up because I loved that book so much. I feel like I highlighted, underlined so much. And something that we quote often in the inheritance of hope world is something that Kristen Milligan, who was the co-founder of inheritance of hope, she was diagnosed with a terminal illness and she had three little, little kids. So her and her husband were trying to find resources, couldn’t find anything. So they created inheritance of hope.
And so she wrote this book, Consider it Pure Joy, and she says…
God assured me repeatedly of his everlasting and unconditional love through gifts and great blessings. If I did not know that God was just and loved us all equally, I would have been convinced that during that time in the fire that I, Kristen, was his most favorite child. What miraculous peace and joy this brings us in the midst of great struggle. Man, that…
Talk about kind of counter-cultural, you know, because she was experiencing terminal illness, knew that she would, you know, die soon and that her husband would now have to be a single parent and she, her kids would have to grow up without her.
Micah Douglas (35:37.462)
for
Ellie Ledin (35:51.692)
who in that situation would say, feel like God’s favorite child. And yet it sounds like that’s very similar to the perspective your dad had of like, this isn’t my whole story, which is beautiful.
Micah Douglas (36:06.396)
Sure, yeah, and one thing my mom always talks about too is like throughout this illness and After the fact my mom always says like it showed us that we can do hard things like Like whatever it is we can do hard things. We’ve been tested We know we’re gonna make it through and just having that mindset throughout all of life Especially like when I joined the military. I went through a special operations selection Which isn’t an easy thing, but I just kept saying in my head like we could do hard things
like there’s nothing that’s gonna stop us so…
Ellie Ledin (36:37.262)
Mm.
Ellie Ledin (36:40.758)
Yeah, like you’ve already kind of developed a lot of emotional resiliency. And so I’m sure it’s a very different kind of trial or difficulty that, you know, the things that you are going through in the military are kind of bringing up. But I mean, you kind of had a huge training ground and it kind of got on the other side of some really difficult things.
Micah Douglas (37:00.544)
For sure.
For sure.
Ellie Ledin (37:07.09)
In the midst of trials with like your dad’s ALS and kind of seeing the impacts of such a terrible disease, what were, if do you have any times that felt like glimpses of being loved as God’s favorite child? Like really poignant stories where it’s like that, it doesn’t make sense why I’m feeling so much peace or comfort or joy in terminal illness.
but I feel like God’s favorite child.
Micah Douglas (37:58.901)
Ask a question again.
Ellie Ledin (38:01.198)
In the midst of trials, what were some glimpses of being loved as God’s favorite child? God’s favorite child.
Ellie Ledin (38:15.586)
Like were there any times that felt surprising of like, I’m surprised I can laugh or feel joy or comfort or peace. And I feel like God is just really near to me.
Micah Douglas (38:46.976)
Alright, I have a, I kinda have an interesting story, but I don’t think my dad’ll mind that I share it. Yeah, so throughout ALS there’s lot of trials and tribulations that you go through, uncomfortable situations, and…
Ellie Ledin (38:50.933)
Okay.
Micah Douglas (39:05.366)
I remember, I don’t know what my mom was doing, but she was out for the day or she was on a trip and it me and my older brother taking care of him. And he called, like we had this Alexa system where he could like, from his computer, like make an announcement around the house. And it was, Micah, come here. I was like, oh man. So I went into his room and my dad had…
Ellie Ledin (39:26.83)
You
Micah Douglas (39:32.363)
went to the bathroom and I had never really dealt with helping clean him up and like I grabbed my other brother like you gotta come help me you gotta come help me and it was a big mess didn’t want I did not want to be in there and I think what made me get through that is my dad is sitting there laughing the entire time cracking jokes while me and my brother are so mad that we’re like cleaning up we’re changing my
Ellie Ledin (39:38.264)
Hmm.
Ellie Ledin (39:53.806)
Ha ha!
Micah Douglas (40:02.306)
dead, a grown bed, I think him laughing and cracking jokes.
Ellie Ledin (40:03.532)
Yeah.
Micah Douglas (40:10.984)
and getting through that experience was something where it’s like, yeah, God’s with us. He’s making my dad laugh. I felt like God was going through my dad and helping us through that situation. And me my brother got through that. And there was many more episodes after that, and we were well equipped. But that was one that stood out in my mind.
Ellie Ledin (40:19.246)
Mmm.
Ellie Ledin (40:28.491)
You
Ellie Ledin (40:33.982)
Yeah, my gosh, that would just be such a funny, well, not funny in the moment, I’m sure, but kind of uncomfortable. Yeah. my gosh. Well, yeah, we say a lot of times, jarro, joy in sorrow, or like joy in terminal illness. And it feels like one of those things like.
Micah Douglas (40:40.02)
Yeah, after the fact, hilarious. But in the moment, no. It was not a situation we wanted to be in.
Micah Douglas (40:53.246)
Okay.
Ellie Ledin (40:58.814)
what you shouldn’t really be laughing right now, but it’s hilarious. Like this is there is joy, there’s lightness in this really dark, heavy thing. And I think that’s just how the Lord operates. Like we get to have moments of joy and lightness in the midst of some really hard things. And and that is, I think, such a poignant story.
Micah Douglas (41:21.204)
Yeah, nah, yeah, and there’s plenty more like that. Like anytime you’d be like combing my dad’s hair or like plugging his medicine in, he thought it was the funniest thing to be like, ow, ow, what are you doing? I’m like, dad, you can’t be doing that. Like, I’m trying to help you. But yeah, laughter was definitely a cornerstone of helping my family through hard times, right? Like just laughing. Like you said, Jara, I like that. Like joy and sorrow, that’s awesome. So.
Ellie Ledin (41:37.066)
Yeah.
Ellie Ledin (41:45.422)
Mm-hmm.
Yeah, well I know you’ve said that your dad is super goofy and obviously brought a lot of humor in serious situations. How else would you describe your dad to someone who’s never met him before?
Micah Douglas (41:57.184)
Yeah.
Micah Douglas (42:03.574)
Man yeah, I wish I wish you were still around as I always want people to meet my dad because he was such an awesome guy I Think I made a Instagram post where I talked about him and one of the big things I would say about my dad is definitely a leader Everything he did like he’d be the guy that everybody looked to for answers for advice
a mentor, coach for one, like big throughout my life. was baseball coach, wrestling coach, and yeah, he was the guy. would also, I would describe him as a jack of all trades. There wasn’t much that my dad didn’t know how to do, and he was great at a lot of things, very smart. He even worked a job, like he worked at his engineering job up until like eight months before he passed away, which is absolutely insane to
that he was providing for my family all the way up until the end. Never gave up. One thing I always remember from wrestling is before we went out on the match, he would just look at me and say, no excuses. And I’d say, no excuses, and we’d go out there and do it. And that’s something I carry with me all the time throughout life, work, and every time I’m like, don’t want no excuses. Let’s go, let’s do it.
That’s how I view my dad. He was an awesome guy. Leader in Christ, leader at work, leader in the family. Definitely sad that he’s gone, but he’s left an impact on so many people. It’s insane.
Ellie Ledin (43:39.424)
Yeah, it sounds like it. It sounds like, you know, the kind of person who when you enter a room, people notice like you just have a presence and and I’m sure, you know, that those different aspects are probably showing up in you and your siblings in different ways. But you all kind of probably carry huge pieces of him so that now you kind of emulate the same thing in different ways.
Micah Douglas (43:48.842)
Yeah.
Micah Douglas (44:07.764)
Yeah, I hope so, because if I’m half the man my dad was, I made it out good. So that’s way I look at my dad.
Ellie Ledin (44:09.955)
Yeah.
Ellie Ledin (44:14.794)
Yeah, man, sounds like a great guy. And I’m so excited that you’re gonna get a legacy song to kind of, you know, put his story and some of your family’s memories and some of the things you just said in a song form so that it’s just another way to kind of carry him with you day to day.
Micah Douglas (44:19.274)
Yeah.
Micah Douglas (44:33.27)
Yeah.
Micah Douglas (44:37.75)
For sure, yeah, having that legacy song would be really cool. I’m excited to hear it.
Ellie Ledin (44:41.633)
Yeah.
Yeah, and you don’t have it yet. The artist is still working on it. But by the time this episode is out, we’re actually going to end, you know, your episode with the song. And even just from the answers you submitted, I see that, you know, throughout all the stories you just shared. So I’m really excited to see what the artist kind of comes up with to summarize, you know, such a big personality and so many stories for your family. But, you know, the audience
is just gonna hear it in a couple minutes here, so yeah. Yeah. Well, is there anything else that you were hoping I asked or anything else you would like to share, whether about your dad, inheritance of hope, your story, anything we didn’t get to?
Micah Douglas (45:16.128)
Heck yeah, that’s awesome.
Micah Douglas (45:35.555)
no, think you hit a lot of the points I want to dig across. I’ll leave everybody with, if you’re worried about starting with inheritance folk or getting plugged in, I’m telling you, you will not regret the decision. Every, you could talk to, there’s countless families out there that you could talk to that are going to say the same thing. So don’t, don’t just take my word on it. It’s seriously a life-changing experience. It’s a community of people that are like-minded in Christ and have similar experiences.
experiences and I see no reason why you wouldn’t want to get plugged in with IOH. So I just say get out there and do it.
Ellie Ledin (46:13.996)
Yeah.
Man, what a glowing review. feel like hopefully that’s really compelling to people who are maybe on the fence about it. yeah, like we said, being a family served, because I know sometimes, like you said with your dad, it’s really hard for people to ask for help or be on the receiving end. So yeah, if you are a family that’s like, no, we got it. We’re not thinking about mortality. We’re not thinking about being helped. It’s okay. We actually find that it’s easier to get people to volunteer.
Micah Douglas (46:17.652)
Hahaha
Ellie Ledin (46:44.944)
than to be on the receiving side of things sometimes. So yeah, hopefully Micah’s review just helped, but we always end every episode by asking each guest like whose legacy has impacted you, whether in their life, in their death, like who has been so influential in your life that you still carry on their legacy.
Micah Douglas (47:10.55)
I just go back to my dad. All the lessons he’s taught me, the way he lived his life is exactly how I want myself to live my life in the future. I want to emulate all his great qualities, his love for Christ, his love for his friends and family.
He always said, the end of ALS, cherish close relationships. And so I always keep that in the back of my head, that we’re not all gonna be here forever. And we should cherish the close relationships, make close relationships with those people around you, love on them, serve them, which ultimately leads to serving Christ.
Ellie Ledin (47:54.092)
that yeah not surprised by that answer at all. Well thank you Micah for sharing your experience I know
Micah Douglas (47:56.886)
You
Ellie Ledin (48:04.25)
you’ve walked like a really heavy journey, but it’s even so cool to hear how much, even some of the sayings that your dad had kind of instilled and you like see how much that’s impacting you. And I think people who are listening are really going to resonate with your story and hopefully laugh along with some of the stories you shared. Yeah. But I really appreciate it. Yeah, of course.
Micah Douglas (48:15.36)
Right.
Micah Douglas (48:24.072)
Yeah, hopefully, hopefully.
Micah Douglas (48:30.519)
Of thanks for having me on.
A Father’s Legacy Through ALS: Micah’s Story.txt
Displaying A Father’s Legacy Through ALS: Micah’s Story.txt.
