THE ONES WHO DARED
THE ONES WHO DARED PODCAST Elevating stories of courage. You can listen to some of the most interesting stories of courage, powerful life lessons, and aha moments. Featuring interviews with leaders, pioneers and people who have done hard things. I hope these stories help pave the path for you to live out your courageous life.
THE ONES WHO DARED
Staying Is the Bravest Thing: A Love Story Through ALS | Lori Oberholtzer
"It is so natural to work to avoid pain, hardship, and suffering. People will travel thousands of miles, leave, or get very good at pretending in order to escape pain. But, what does it look like to stay, especially knowing it will be impossibly hard, heart-wrenching, and will push you beyond your human limits and desires?" -written by Lori & Justin Oberholzer "Teach me to stay" blog on walkuphill.com
Lori Oberholzer shares her raw, powerful story of walking through her husband Justin's seven-year journey with ALS while continuing to hold space for her family with remarkable faith and resilience.
There are famous people and then there are silent superheros who create the greatest impact to those around them by loving faithfully. Lori is one of those people. Get your tissues out and get ready to be encouraged by this sacred conversation with a remarkable woman.
Visit Lori's and Justin's blog at walkuphill.com to follow their journey.
or purchase a quit from Etsy to support them.
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This episode is truly special and I would have to warn you that if you're going to listen to it, get some tissues out, because we have basically cried our makeup off our eyes during the interview. Lori Oberholzer has a really beautiful story of continuing to walk through some really really hard things. She's on her seventh year of her husband being diagnosed with ALS and she shares the raw, the real, and she's continued to faithfully walk with him in that season and hold space for her family. And I know that you'll be encouraged by this episode. Even if your situation looks completely different and perhaps you're walking in the middle of your heart, this one is a really special one and I know that you'll be encouraged by it, so tune in and be encouraged. Hey friends, welcome to the Ones who Dared podcast, where stories of courage are elevated. I'm your host, becca, and every other week you'll hear interviews from inspiring people. My hope is that you will leave encouraged. I'm so glad you're here, lori Oberholzer. Welcome to the Once a Year podcast. I am so honored to be sitting across from you. Thanks, happy to be here.
Speaker 1:So there has been multiple people that were like, oh my gosh, do you know Lori? You need to have her on the podcast and I'm like, no, I don't know Lori. And then, after hearing that multiple times, it was like maybe I should look this Lori up and you know who are they talking about. And then I met you and then I was like, oh, I need to have Lori on the podcast. Oh my gosh. So here we are. This is like a month later, right or so, with your busy schedule and all of that. You made it. So congratulations, made it. I'm here.
Speaker 1:Yes, you're here, Yep, yeah, so you have quite an incredible story and a hard story, and a lot of us also have hard stories, and so for me, I know that you're in the middle of still walking all the things out, you know, and that can be a really hard place to be because you don't know the future and you're in the middle of it, and but what I personally admire about you is the way that you're walking it out. Thanks, and that's why I really wanted to have you here. Yeah, thank you, and that's why I really wanted to have you here. Yeah, thank you. Okay, so can you share a little about your life? Before you found out your husband's ALS diagnosis? What was your life like? What were you up to? Your family, all of that? I know you guys were building a business.
Speaker 2:Yeah, yeah.
Speaker 2:So Justin and I I guess we're coming up on 12 years now but I was working at a nonprofit called Hope International and they do under microfinance.
Speaker 2:So we had one daughter named Talia and I would say I was a pretty creative person. So we were pretty goal-oriented and a really good team in all things and we started flipping houses together because we had kind of a dynamic duo going on, with Justin being a realtor and he was on the buy-sell side and then I did all the design stuff in the middle and we loved traveling, we had a great community and we're really involved and both very extroverted and very social and so, yeah, just people traveling, both doing what we were passionate about, and then just on the cusp of building a business together. So we kind of had always said, hey, maybe when we get pregnant with a second kid we will, like Lori will stop doing Hope International and I will build a business. And we ended up doing that and I will build a business. And we ended up doing that. I got pregnant with Benny and I transitioned to starting Plum and Fig, our interior design flipping business, which I love the name.
Speaker 1:Can you give us a backstory on the name and what it means?
Speaker 2:Oh, yeah, yeah that. So Jess and I, we're both extroverted on social and are a great dynamic team, but we also have some pretty different skill sets. So plum came from it kind of represents like Justin was the more like measured, calculated, analytical one. So that came from a plum line and then we just kind of put a fun spin on it.
Speaker 2:And then fig is just Italian fruit and it's beautiful and has a beautiful color and a nice aesthetic to it. So we called it Plum and Fig and it kind of represents the two parts of our business because we both had different priorities. Like he was on the buy-sell side, I did all the design, so we were flipping houses together and I had—Justin was really—is still really good at supporting all my creative endeavors. I kind of—very creative, love to start things and he is always supportive. So I did a house flip and he was supportive. And then, yeah, right, when I got pregnant again, I was like I want to keep doing this. So we started that business Amazing. So that kind of led up to his symptoms. That was right before.
Speaker 1:Yeah, and on your website I've seen like the house that you guys redid together. It's beautiful, beautiful work. So, yeah, you have the interior design background, which is amazing, and business management correct.
Speaker 2:Yes, like what I went to school for. Yeah, I like most things, I do things a little bit different. But I went to a Christian private school but also went for art. So they didn't have an art program. So I went to another school. I made up my own major and I combined business and art and made up my own interior design major. Essentially Wouldn't recommend that, but that is what I did and I'm using it.
Speaker 1:But I would say and Justin's really outdoorsy, loves backpacking all the mountain stuff.
Speaker 2:Yep, he was a yeah, totally athletic.
Speaker 1:He loved backpacking and went on an annual trip with his buddies every year and we traveled a lot, a lot in Europe and, yeah, africa and all over. Yeah, we loved traveling together. Amazing. So you're pregnant with your second child, yep, and then, at that point, your husband, justin, has some what's going on with his hand.
Speaker 2:that there were some symptoms, yeah, where that caused you guys to go to the doctor so we found out we were pregnant and then that kind of like cued our transition from my work to starting our own business, which was kind of crazy timing. It also meant we like lost our health care and we were just going to carry that on our own. But right around that time Justin was starting to experience weakness in his hand, which was really abnormal. Justin was an athlete and worked out a lot and had just finished running a marathon, and so it was really unusual that his hand felt weak and he didn't think much of it, but his neck was starting to feel sore and we were traditionally like I mean, we both probably would have like said we didn't have a family doctor. I mean we were not like doctor, people were both very healthy, very active. So it was just unusual.
Speaker 2:Anyway, he went on a backpacking trip with his buddies and while he was out west, you know, hiking a mountain, he asked his buddy, who was a physical therapist, like hey, my hand feels weak. And so his buddy looked at it and it was unusual to him that he couldn't like recreate the weakness or make the weakness better. So he was like that's unusual. Usually I can like put your hand in a maneuver to ease the pain. So he was like this is something, you should go get it checked out. And so, because of his buddy's you know concern, we started down the road of doctors and doctor visits and we just did not think it was serious though at all, but each doctor kind of kept pushing us to the next doctor and kind of queuing more intense testing. And yeah, it started us down that road for sure.
Speaker 1:Yeah, and Justin was. How old was he at the time?
Speaker 2:Gosh, I think he was 35. Yeah, I think like around 35.
Speaker 1:Yeah, which is really young too. At this point you're not really thinking there's anything that could be happening. You're healthy, You're fit, active, all the things.
Speaker 2:Yep, yep At this point, yeah, it was totally out of our realm of consideration.
Speaker 1:we were both extremely healthy and active and yeah didn't think much of it, so so, your husband's 35 at this point and you guys go to the doctor, go from one to another, to another, and then you have a nurse that comes in and tells you what.
Speaker 2:So at this point we were like right around the summertime is when testing started. So we started going to doctors and you know everyone was looking at him saying like you are healthy, you're fine. And each test was coming back inconclusive, which for us was encouraging. But I think from the doctor side they were like it's good, but inconclusive tests could mean something really bad. So we were like, well, inconclusive means we're fine. But we kept going and they kept sending us to more and more specialists.
Speaker 2:So at this point we had done every lab you can imagine. We had gone to EMGs like nerve conduction tests. We had MRIs and one doctor you know did find some white spots on his brain scans which could suggest MS and they threw out MS which leveled us. We were like we are here because his neck is sore and they threw out some really scary health diagnosis and so we were like this can't be MS. So around that time we started gathering prayer support. We were like listen, they're throwing out some scary things, ms being the worst. We think it's probably just a sore neck. But tests kept coming back inconclusive. It wasn't a very clear-cut MS case. So they were sending us to neurologists and some doctor along the way, had put you know throughout ALSing, it's probably not that that would be extremely rare, like 0.001 rare for someone your age, so young, to get this. So we kind of didn't give it much thought.
Speaker 2:But this six-month period was throwing us for like I mean I was pregnant and I was extremely was throwing us for like I mean, I was pregnant and I was extremely yeah, definitely going to a place of fear because of what doctors were throwing out and anxious about what could be wrong. And then in December we went to UPenn and a doctor with pretty terrible bedside manner we were doing more testing at this point came in with a smile on her face and Justin and I were like, okay, this means good news, she's smiling. We later learned it was probably an awkward smile because she came in and said okay, you have ALS, whoa ALS. And we were leveled, like totally confused because of her body language. But also we weren't expecting.
Speaker 2:I mean we had gone through six months of testing where no one had any answers for us, so we weren't even expecting a diagnosis. But when she walked in and threw that out, we were like shocked. We like had no words for her. And so we were in Philly and the appointment was fairly short and she just said, like do you know what ALS is? And we'll get you set up with an ALS clinic. And like everything inside of us is screaming like no Like, no Like no, we're not.
Speaker 1:This can't be the reality. This can't be our reality.
Speaker 2:There's got to be a mistake, right? Yeah, so that did trigger like the thinking that this is a total mistake and we will start ripping down walls and figuring out what this is, because this doctor is very, very wrong ripping down walls and figuring out what this is, because this doctor is very, very wrong.
Speaker 2:So we left UPenn and kind of we were like numb and in shock and walking through. I just remember like walking through the Philly streets and like life happening around us and people you know walking past us in a hurried way and we were just like holding hands and in shock and we um, walked into a cafe and sat down and like wept, just there in Philly, in front of everyone, we just wept and it was, yeah, really like a hard reality that we like we still weren't accepting it and we still. But it was just like. Those words were hard, really hard to hear yeah, because it's like a first year.
Speaker 1:You must be in denial, like this isn't. Yeah, like I'm hearing that she said that, but this can't be a reality. Yeah, like it, there's must be a mistake, right?
Speaker 2:totally, totally wow yeah, and then we just drove home and definitely like screamed and cursed and wept and the ride home was really hard because it was like you just go to this place and they tell you this hard thing and then they expect you to live after it. It's like. It's like that moment where you like take your baby home from a hospital. You're like wait, you're just expecting me to like take this baby home.
Speaker 1:Like that moment where you like, take your baby home from a hospital.
Speaker 2:You're like wait, you're just expecting me to like take this baby home, yeah. And like I had this new thing that we had to carry and we didn't know how to carry it and so, yeah, I mean I don't think anyone would know how to carry that Right.
Speaker 1:I mean, it's like as a shock, shock. And then you read on and I'm sure you've done a ton of research and it's like, okay, this is what this potentially means and is this what's going to happen to our family? Yeah, and what is that going to look like? Yeah, all of that, it's a lot, it's a big, a lot to carry.
Speaker 2:It's a lot. I will say like the ride home was hard and I would have said it was probably my, like, number one fear in life. I had seen my uncle walk through ALS and so our first phone call was to my aunt, who walked with her husband through ALS, and she was shocked and, you know, tried to, you know tell me it would be okay, but I had seen it not be okay, yeah, and so I called her and yeah, like I have done hard things, I have walked with my dad through cancer and I have seen a lot of hard in the world, but watching my uncle, I mean that was just the most devastating disease I could imagine.
Speaker 1:And.
Speaker 2:I was terrified, I mean my whole. If you had asked me years before, like what is your worst fear in life, I would have said ALS, Wow. And so that is Because you seen your uncle Because I had seen it.
Speaker 2:Yeah, and there's a lot of bad things out there, but that was just like my thing, my fear. So I was like terrified and there was like so many times where I could look back and say like man, that was the Lord. There were hard things I didn't understand in the moment where I'm like shoot, I quit my job, I lost my insurance, I am starting a new business, I'm pregnant. This is not the time to like deal with a massive health thing. So you know, like there's little things where I'm like okay, this is an expensive disease they call it the bankruptcy disease for a reason and I don't know what we're going to do. But you know, looking back, I can see how the Lord has like numbered our steps and been really faithful. And actually it was a blessing that we got off traditional insurance, because we got on Samaritan Ministries and they covered a lot of alternative stuff which we did for a solid five years.
Speaker 2:And you know, like things like that when, like the Lord knew and we walked into our house in Lancaster City and my sister, my little sister and her husband and then one of their friends were waiting for us at our house in Lancaster City and my sister, my little sister and her husband and then one of their friends were waiting for us at our house and they had brought a friend to just be there to pray he has his own ministry and my brother-in-law and sister are also in ministry and they were just like, hey, we'll just wait at your house until you get home from Philly and we'll be there for you, and that was the day you got the diagnosis. This We'll be there for you, and that was the day you got the diagnosis. This was the day we got the diagnosis. So we walked into our house and they were there and we again wept and just, yeah, we just wept with them and they held us. But I'm like the timing. More so was the way that they held us and then set the trajectory for our next couple years I mean we that.
Speaker 2:I consider that moment pivotal because they held us and they wept and we prayed, but then they also set, helped us, set the tone for how we would walk through the journey through worship. So they spoke a lot of really encouraging words into us, like you know, talking about how, when you're in seasons of extreme suffering, your worship to the Lord is unique. Suffering, your worship to the Lord is unique, and to still honor the Lord and worship through our suffering is precious, and it's not what Jesus would want for us. However, if we can honor and stay true and faithful and worship through our suffering, there is like a precious and pleasing aroma to the Lord that they were encouraging us to carry, and so in that moment, they worshiped over us and they like prayed over us.
Speaker 2:And yeah, they just like held us but then also like encouraged us and we were really moved by that. But that set the tone for like what Justin and I had said, like this is how we want to walk this out, like we want to worship our way through the storm. That was a pivotal, pivotal moment for us and one of our hardest moments in life.
Speaker 1:Yeah, thank you for sharing that. Yeah, so, lori, as you got your diagnosis and you guys were, as, as a couple, walking it out, how did you, what did that look like for the two of you, and how did you guys support each other? How did just in the middle of this transition, Justin was incredible.
Speaker 2:He had such a like like God-given faith and I always called him my true north because he is just such a steady person and just so steadying for me. I tend to feel deeply and my emotions are pretty raw and open and visceral, and so he gave me total space to like weep and he held me a lot and then his faith was incredibly steadying for me. So I just remember some of those early months. The diagnosis period was traumatizing, but then the early months were just hard because I was at this point like six months pregnant and lots of raw emotions. His faith was incredibly steadying. But I also kicked into this like high gear of like this is a misdiagnosis and we're going to tear down every wall and figure it out. So I kind of also kicked into like heavy research mode and so we, you know, got into Mayo Clinic and they made exceptions for me to travel and fly, like extremely pregnant. I think I was like, how was it? In January? So I was like eight months pregnant and you know the doctors were like do what you need to do? Like everyone, like completely understanding. They were like do what you have to do. And so we got into mayo and called every single day to get an appointment and because they were like, oh, we're booked for months and I'm like we need to get in.
Speaker 2:So we were like tearing down walls but, you know, heavy on the research, we went to john hopkins. We went to, you know, every hospital you can imagine. We went to Duke, we covered the East Coast and we were looking for something different. We also like surrounded ourselves with community and brought them in and had prayer and worship nights and, yeah, at this point, like we were, it's really like I think Justin didn't have the um, the physical symptoms yet I mean it was like, okay, sore hand or a weak neck, yeah. So it's weird when someone speaks something over you, when you're like I don't feel it yet, like you know what's coming and what the doctors are saying and what they're prepping you for. But it was easy to have faith in those moments because it's like it's the fear of the future and he was really good at controlling that fear of the future.
Speaker 2:Whereas my mind, you know, I went into full fear mode and hadn't yet learned which I'm getting a little bit better of of like walking in today, like he was able to say I'm not going to let fear control me. And it's much easier to do that when you don't have the physical symptoms yet. And so we kind of used that time to like steady ourselves and support each other and hold each other, and we did that in different ways but gave each other a lot of space to do what each other needed to do.
Speaker 1:And process and I'm sure in that time too there is a sense of grieving, right Like grieving of a loss, of what is to come, the changes that you're kind of starting to experience.
Speaker 2:Yeah, and there wasn't like a. I mean, they were, you know. Now they feel so significant. It's like almost like every month, we feel like the loss of something big, but this, yeah, it wasn't everything all at once, which is part of the brutal nature of this disease. It's like this slow torture that you're like, okay, that's taken, now that's taken. Torture that you're like, okay, that's taken, now that's taken. So maybe the first thing I experienced was like, okay, I'm having a baby and my husband won't be able to massage my back like he did for Talia. Like he won't be, like I had back labor for both of them. He won't be able to like press my back.
Speaker 2:So I'm doing Like during labor, during labor, yeah, so like I'm doing labor alone, it was kind of like I can do this, like this is, this is okay, yeah, um, I still just went just in the room, so it was like his presence was still there. But that was probably the first thing where I was like, okay, it's a little bit um, it's just different um. And then, like you start seeing things where, like I like his coordination started going. So, like, after the baby came, it was like, ok, justin could hold the baby safely. He couldn't change a diaper, you know. So it was like I've changed every single diaper or his sleep was really important.
Speaker 2:My first child of you know, justin, of course, would get up in the middle of the night and rock the baby to sleep and give me a rest. Now, for our second baby, he couldn't change diapers, he couldn't help in the middle of the night, because I was like, no, you need your sleep, your body needs to fight, you fight your battle, I'll take care of the baby, like. So there was just like a the start of a transition, of like how we like did responsibilities different. So that was kind of how it started out At the same time.
Speaker 1:that's a lot of weight on you too. How did you navigate? Having more responsibility fall on you, naturally, as the result of this being part of your life now and you mentioned community was a really, really big thing. And I think community is so essential, just for all of us, no matter what season of life you're in, but especially when you're facing something difficult.
Speaker 2:Yeah, I've definitely gotten better at letting community in and help. That was really hard in the beginning. And there's also this like really interesting like you know, I had to do the research, I had to do doctor's appointments, like there's certain things that you just can't pass off.
Speaker 2:So in the beginning it was like I have to be the one to research and I have to like nobody could tell me which clinical trial to enter. You know, there's certain things that I had to be the one to research and I have to like nobody could tell me which clinical trial to enter. You know, there are certain things that I had to do. But yeah, our community rallied in like the most amazing ways and I think it's just a testament to who Justin is and like he had a very strong community and support system and we both have amazing families that rallied around us as much as they could in remarkable ways.
Speaker 1:Yeah, yeah, think the two areas that get hit the hardest um.
Speaker 2:I love my husband deeply and it's brutal to watch the person that you love like suffering and not participate the way that you know he would.
Speaker 2:He wasn't as an amazing husband and father and I like I know how it's killing him to not be involved the way that he would with both our kids and in our relationship.
Speaker 2:So probably the hardest thing is just watching him not be able to participate and losing relationship. We have like fought so hard to maintain connection and relationship, because you hear all the horror stories of, because you hear all the horror stories of what this disease does and it's like I mentioned, it's called the bankruptcy disease for a reason. Like it steals everything slowly and we have been like really committed to trying not to let it steal relationship, which has always been like relationships are the most important to us, like our people and each other, and so we have put so much energy and effort. But there is like that reality of like when you can't use words to communicate, or you can't touch, or you can't hold or yeah, like there is just this loss of relationship. That is natural and that is natural and that is brutal. And our kids don't like know so much of what they're missing because they're just kind of along for this ride and they know what they have. But it is brutal because I know what they're missing.
Speaker 1:Yeah, yeah, and you know the Justin, the healthy version of Justin, yeah, the vibrant, the active version of Justin, so seeing him deteriorate before your eyes is just yeah, yeah Brutal. What's another really hard thing for you in this season?
Speaker 2:I would say like parenting through this has been, like it's more challenging. So in the beginning it's like, oh, I have to do diapers by myself, Not a big deal, you know, like there's those physical things that you know it's not generally the physical things that actually feel hard. I mean, this is hard work but it's not that hard, but it's not that hard. I think the hard things are the emotional things where it feels a little bit like single parenting some days. But even that is like single parenting feels a little bit different because I'm also caring for this adult human with adult emotions and adult limitations, with adult emotions and adult limitations. But parenting is really complicated because I'm so limited in, I feel like, what I can give, Whereas in most scenarios I would say your kids are generally the priority.
Speaker 2:If they need something, Sure, I'll help you go get that cup. In our home it's often the kids you know. I'll say like, hold on, I'll get you that cup in a second, or I can't take you on a hike right now, this isn't a good time because of bathroom or shower or you know no one's here to help or no one knows how to help or limitations with that. So I think parenting is hard because I also know what I would have been able to give and I'm really limited and that kills me as well. Yeah, and how old are your kids right now? Yeah, they're six and eight. Okay, so we kind of track Justin's diagnosis almost with Benny's age, because I got pregnant almost like the same month that Justin started experiencing symptoms.
Speaker 1:So, yeah, yeah. So how do you stay sane through all of this? Because that's, as you mentioned, a really heavy load. How do you navigate? I don't want to use the word balance, because I don't even believe the word exists really, especially in this situation. But how do you navigate, trying to also take care of yourself and fill your cup while you have to give so much of yourself to your kids, your husband and you're like, really involved in the community?
Speaker 2:May I add, she runs her own business and other things too, and projects. And yeah, how do I say same? Well, I think it depends on the day day. I mean, I think if you walked in my house a few days ago you would have been like Lori's losing it and then some days you walk in and you're like, wow, this is a really great space.
Speaker 2:So, you know, I think it depends on the day. I think like long-suffering just has this way of like leveling you some days and then some days we're like we're doing all right, like we're like we're like we're doing all right, like we're like we're doing it. We're doing the hard thing. I am still like a pretty firm believer in like feel all the things and I'm like an external processor, but I I do that a lot with myself. It's hard to like say all the things and put extra on Justin, although he is like a really amazing listener and you know moments I will just be like this is hard because of all the people in the world. He understands. You know our situation the best, but I also try and like be sensitive to as much as I'm feeling and experiencing. It is harder and worse for Justin. It is harder and worse for Justin. So I'm like sensitive to that. Um, but yeah, I still feel all the things and there are days where you will find me on my bathroom floor, hysterical and and just done, just like tired not of the physical work, but tired of the battle for life, and we fight so hard every day to stay in a space that still offers hope when you don't have, like earthly, physical hope. So the battle is exhausting, but yeah, so I still feel like feeling all the things. And there are days and we give each other space where it's like he's having a hard day. I'm going to carry him today and he does the same thing, and probably the most it changes like what's helpful in each season, which is where, like having you know, an awesome best friend like Justin is helpful.
Speaker 2:But he's been maybe for months now writing out this prayer and he knows when I'm done, but or I'll tell him when, like he can probably see it but.
Speaker 2:And so when we're just like we just need a minute and it's usually after the kids go to bed, but yeah, you could walk into our house and be like, oh, they're having a minute, he will put on this prayer and he can't speak the prayer out loud, but he has typed it up with his eyes on his computer and it's now like a eight minute prayer, maybe 10 minutes now, and he keeps adding to it, but it's like the words of life that he speaks over me and touches. It's like that's life-giving right now. Yeah, like that's life-giving right now. Yeah, you know his words mean everything to me and so it's just man, like he's still the setting force and he's still bringing us back to our knees and still orienting our eyes to God. And there's not a lot of ways he can do that, but this prayer is a way that he still taps into, that it helps orient our family and it's still holding space for you.
Speaker 2:Yes, I usually just sit on a couch and cry for the whole eight minutes of the prayer and then there's no words after that. It's just like this is hard and it's hard for Him and we don't have answers. But we're still going to like hold each other and we're still going to walk forward and we're still going to like trust Trust in the fact that we don't know what God does.
Speaker 1:Right, right, what do you wish people knew about? Either your situation or situations like yours, because I feel like people may see your family from the outside and make assumptions. Right, like you said, oh, they're doing really great. Laurie's doing all the things, she's pulling it together. Look at her, go right, or whatever that may be. What do you wish people knew? Because I really think that, um, in reality, a lot of people have different struggles, right, and they may be visible, they may be invisible, yeah, and when we see families or people, whether it's their christmas cards or social media or whatever that may be, most people look like they have it really together.
Speaker 2:Yeah, it's like a snapshot of a moment and everyone's smiling and we definitely have those. And then we definitely, you know, I have those moments where I'm like you know we have invited our neighbors in and I'm like you can walk into our house. But when you walk in, know that it might not be like everyone's happy. It might be that we are all in tears right now because everyone's dealing with this differently. And you know, sometimes we're laying hands on Justin and my kids are there and we're praying. You know I could be having a great moment and managing all the things and everyone's fed and everyone's gone to the bathroom and everyone's showered everyone's happy.
Speaker 2:You know, like that could be the situation or it could not be the full story. I guess is what um is true for most people in hard situations where if you could, as like the human race, if friends could see that and they have in the most incredible ways. But for people walking through hard, I guess my encouragement would be like lean into the hard and know that one smile is not indicative of the rest of the day. And when you're walking through hard it's incredibly isolating. I mean I know everyone walks through hard, but we don't have a single friend in our proximity walking through terminal illness for seven years and it's not just grief and death in a single instant, it's like losing something every month and that is so much grief and we don't have a similar situation. So it's incredibly isolating.
Speaker 2:And so if you can lean into those that are feeling isolated, even if they are completely surrounded I mean people joke that my house is like a revolving door I mean there's always people at my house and that brings us life, because we're already isolated in our situation. So we don't want to be physically isolated, but if we could lean into the hard and then a lot of grace to realize like what somebody needs, year one might not be what they need, year seven or building a relationship with Justin. We just had to, you know, kind of make this clear that building a relationship with Justin right now does not mean like going for a hike in the woods Right or even being social at a neighborhood party. Building a relationship with Justin right now means knowing how to move his hands onto the trigger of his wheelchair or knowing what his eye means when he looks at his leg. So it's like knowing his cues and being helpful to him physically because he's in a state of uncomfortableness. So like being in relationship just looks so different.
Speaker 1:Yeah.
Speaker 2:And our human needs haven't changed. We still need people, we still need relationship, but like being the kind of friend that changes with the changes, which is so full of grief for friends too, but like leaning into the hard, knowing that relationship might mean not having the deep conversation he would have had four years ago, but watching a movie and just being present.
Speaker 1:Yeah, that is a gift right To sit alongside someone.
Speaker 2:Yeah.
Speaker 1:Sometimes you don't have to use words, you're just being present, in the middle of just being there.
Speaker 2:Yeah, presence is huge and you almost don't get the fuller picture until you spend the time being present. I think that's true of all relationships. I mean, the more you get to know, it's like you know their life, you know their kids, you know their work, you know what makes them happy and sad, and I think that's like same with us. It's like, until you really enter in and spend time, it's really hard to know the full scope of what you're dealing with.
Speaker 1:Yeah, so your house is a revolving door, it's an open.
Speaker 2:Do you have an open door policy? Yeah, yeah, it is usually open door policy, so you have a warning where, like you may see this, you may see that as you said just be aware.
Speaker 2:Yeah, there's like times that we do try and carve out like family time, like our life is really unique in that, like we have to almost like plan, to be intentional and plan Like these are the hours that we're trying to do something as a family, because these are Justin's best hours, so he might have the most energy in the morning and energy might be like he's still just watching the kids play, but protecting that as a family. So we do have like a few boundaries to just be like this is Justin's best time and so we need to save this. Even if he's not participating but he's watching right now, that still feels precious and we want to like save that for him.
Speaker 2:So, yeah, for the most part, there's a lot you know a lot of people in our house also, just because we need a lot of help mm-hmm, what is currently encouraging you right now, or what are you holding on to?
Speaker 1:I should say, what's bringing, giving you hope?
Speaker 2:Yeah, what's encouraging you, Justin, and I are. We love learning and we love learning together, and so I would say we just finished this ministry school at our church and we've taken several different classes just to keep learning and growing in our faith. But we don't have a lot of physical hope and we haven't since diagnosis day. The physical hope is not present and as we've seen more physical decline in his body and as we've seen more like physical decline in his body, that gets stripped away real quick. But I think we're leaning into our faith because that is what we have to stand on and we know that miracles happen.
Speaker 2:God can do the impossible and everyone does not get healed, but we know that God can heal and so leaning into our faith and then building that up is probably like the biggest thing. That just that's like our biggest strategy, our biggest resource. Where we're, like God has told us from day one to abide and stay close and it's kind of like in his shadow is where we can find peace, because our earthly reality is so daunting and like full of hard and so like leaning into the only thing that could bring peace is kind of where we're landing yeah, and you have a page called Walking Uphill yeah.
Speaker 1:Can you tell me what that means and how that was created?
Speaker 2:Yeah. So we created a little blog called Walk Uphill, and the words are significant. Justin felt like he got a word early on in his journey that we were going to have to walk uphill. So he got a verse Isaiah 49, 11, and it just encouraged him that God can level the mountain, god can make the path straight, but we're going to have to walk uphill and we don't have a lot of clarity on that. I mean everyone asks like, well, does that mean, like you know, you're going to get to the top of the mountain? And then we're like we're just walking uphill. I don't know. We're just like taking one step in front of the other. But yeah, all mountains have a peak and we hope that we're like we joke now that we're summit seekers Like we are just looking to get to the top of's writing.
Speaker 2:So he has a computer and he uses his eyes to type, and so he spends a lot of time at his computer and will write down his thoughts and suffering has this crazy way of stripping away the American dream and our struggle and our dreams and our desires and replaces it with a much more refined version of what's important in life. So we've been. It's like the hardest thing we've done is just like stripping down everything we want, stripping down everything we know, stripping who we thought we would be as parents or partners or friends, and it's like letting go of everything, and not even like letting go, but almost like it's taken so we don't really have a choice. It's like no, it's being stripped. And then rebuilding almost a more solid scaffolding of our faith that can, like uphold us better than any other understanding of our faith, that can, like, uphold us better than any other understanding of our faith.
Speaker 2:So so, just rebuilding this like sturdier structure for our lives that wasn't dependent on money, that wasn't dependent on our jobs or where we traveled to or you know how many friends we had. It's like we are stripped down and we are redefining what's important and we're, you know, trying to live into that, which is really hard because we feel incredibly limited. But realizing like God's not asking for us to travel the world or start all the businesses or have all the money, like what he wants is our obedience and our fellowship and communion. And so we're trying to, like my sister wrote this really awesome song where our fellowship is the reward Like realizing like fellowship with the Lord is the priority, like that is the goal, that is my reward, and letting that be enough in life, which takes a lot of undoing, and we're not there yet, because every day is a struggle, but that is like our, our focus.
Speaker 2:So would you say that your approach is just taking it a day at a time, or yeah, yeah, I uh, we we have been naturally stripped of some of our long-term goals and we were definitely goal-oriented people and we would sit down in a coffee shop and plan out goals twice a year and we were, was like in us and we loved working and building, and so we're not quite doing that anymore.
Speaker 2:But yeah, our strategy isn't. We don't really have like the five-year strategy or the five-year goals. Right now we're like we are just going to abide with Christ and ask Him as daily as we can. Like, lord, how can we honor you today? How can we serve you today? Let us focus on what's important today and we, you know, suit up metaphorically and try, and, you know, suit up with our spiritual armor and try and get through the day, because we don't have all the other things to rely on. We don't have our goals, we don't have, you know, the stability that we had or that we were able to build for ourselves. We are living in like a place of trust and sometimes we do that well and sometimes we really fail and we are on the bathroom floor weeping for ourselves and feeling a lot of pity and a lot of anger.
Speaker 1:A lot of real, raw human emotions right, it is all real.
Speaker 2:Yes, we give ourselves the space to do that because it is real and it is hard and life is trying and life is trying, yeah, yeah.
Speaker 1:Well, I love. First of all, just I'm so thankful that you're sharing the story and I know people listening are going to be encouraged, because you're a real human who's experiencing some really raw, really hard things, you know, and you're doing the best you can and walking it out day by day.
Speaker 2:Yeah, I'm day, yeah, right.
Speaker 1:And trying, yeah, and it's. I think it's encouraging to know that you know from day to day can look really different and that it's not all peachy and everyone has the kind of the variation of what that could look like from day to day, and there's days that you're discouraged and there's days that you may feel really encouraged. Right, and that's okay too. There's nothing wrong with that. It doesn't mean your faith is less than and whatnot. Are there things that you are currently reading that is encouraging you currently reading?
Speaker 2:that is encouraging you, or?
Speaker 1:Yeah, I tend to read really intense books, I can tell you're pretty deep, you know. I think the truth of the matter is is that when we're stripped of everything and there's no other way to control the situation, right, would we as human beings love to like see how much we can impact the situation in our favor? That's a natural desire. But when you don't have the ability to do that, it takes you to a place that's hard and also really beautiful, and I don't say that lightly, because you know, even just thinking of my grandmother and the gulag right, you have everything stripped from you. The only thing that you control is how you handle that situation and what you think. Your mind, your faith, all of that and some of the best works have been written by people who have spent enormous amount of time in isolation in prisons, whether it's Nelson Mandela or people who've been through Auschwitz like in search for meaning. Yeah, because there's something that they can give us, the rest of the humanity, that maybe we didn't have to go through those depths to experience.
Speaker 2:Yeah.
Speaker 1:But they can speak from that place. Yeah, and that's why I say beautiful, because it's rare, especially living in the american culture, in our society, in the western world, where everything's at our fingertips, you know, you can have the thing tomorrow that you order right and we have access to so much, and when you don't have access to change a certain situation, you don't have a way to make a difference.
Speaker 1:So that's to me, that is why I really wanted to have this conversation with you on the podcast, because you bring something that is so unique and is such a gift for people listening, and I know that you're still in the middle of your heart, like you're still in it, but thank you for just you're honest and you're real yeah, justin would still say like sometimes we check in with each other and we have to like keep things light, and so we have a lot of you know still inside jokes and stuff that like keep things light and you know, um, but he would still say like he wouldn't go back.
Speaker 2:The things that we've gained in this fire are precious and you can't really get without going through the fire, and so, like he would say he wouldn't go back to his other career Like he's. He has something we both have, something that's been like forged, that is precious and we might not have gotten it without. So I think we could do without ALS. Like we're like Lord anything else would be really great. Like we're ready for this season to be done, Like we are ready for ALS to be no more and gone, but what we have gained is really precious, and like we try and remind each other of that on some of our hard days.
Speaker 1:But, yeah, yeah, if there's something that you could pass on to a listener who may be going through a really tough time maybe they're in a situation that's also outside of their control. For whatever reason, what's something that you'd love for them to know from walking your walk?
Speaker 2:I mean, I guess, a few things that I would think, um, like allowing your community and will, like literally save you. Um, and we've like often thought, like how hard would this be if we didn't have our people surrounding us? Um, so like finding ways to let your community in, to love you, which is extremely hard, and we're still struggling through like gosh, feeling so humbled by the fact that people still want to surround us and be present. You know, trusting in the Holy Spirit, and like trusting in, like guidance that you can't really get through.
Speaker 2:Earthly wisdom I mean earthly wisdom has told us that, like we are done.
Speaker 2:I mean doctors would literally tell us, like you know, the first day of ALS clinic, it was like you have two to five years like get your affairs in order.
Speaker 2:They told us all the hard things, like get a lawyer go write your will get, like you know, preparing for death and and yes, those are all real and practical things that we have done.
Speaker 2:But also like trying to live each day for, like, what is today going to, like what can it offer? And then, how can we continue to exude love and how can we continue to be present for people, the things that are also part of human, like caring for my husband. This is being human, this is a part of life. So how do I still be present and show up as a human, doing some of the things that are really important, like loving the people around me, even if it's just inside my four walls, or being excited for a neighbor that just found out they're pregnant, or, you know, painting at my sister's house, or you know, doing things that still show up for other people? It's really important to me to not just become insular and receive the help, but also still find ways to like love and do things that are human, like. This is life, and if I don't do those things, that I lose out on, you know some of the things that are available for me.
Speaker 1:Yeah, yeah, that's so beautifully said that. What I've got out of that, too, is what you said, is that be willing to receive help in community but also continue to be a contributor in some ways. That's within the means too, yeah.
Speaker 2:And they're hard. It is so hard to receive help, like I'm not saying these are easy things, but also continue to be a contributor in some ways that's within the means to them.
Speaker 2:And they're hard. It is so hard to receive help. Like I'm not saying these are easy things. Yeah, because to receive help takes a lot of humbling. And then also like carving out space, like to go to a friend's I have to line up care and make sure my kids are okay and like I have—it takes a lot of planning to like give, but to me it is so worth it. It is so necessary and important to keep showing up for my family and others.
Speaker 1:Yeah, that's so beautiful. What are some pivotal books? In your life, hmm.
Speaker 2:Like I said, I've clung to some pretty intense ones because I think I also am like learning from people who have walked through some really hard scenarios. So I you know again, that's probably just a personality thing because I'm like some people in hard would probably go like I need to read light things, things. But I have leaned into, like Viktor Frankl's search for meaning where he walks through, like how he found significance in life in a prisoner war camp. You know, like that has been really encouraging for me because I'm like okay, I say that I have hard. They also have extremely hard or like more hard, and they are finding ways to like live and want to live and love.
Speaker 2:So that book is something that I've tried to read every year. The Bible I'm clinging to pretty hard these days yeah, I don't know Mostly books of people who are like overcoming.
Speaker 1:Yeah, which I think is encouraging for us to know Like people have done hard things and you can walk this out as well, and you know your story is going to be unique to you and it may look really different from Viktor Frankl, right? But at the same time, there's universal threads that are that resonate with us. Yeah, yeah, laurie. On a practical level, how can someone support you or someone in a similar situation?
Speaker 2:Yeah, well, I feel like my community has been the biggest teacher on this one. So my community has taught me so much on how I can love others well, by example. So I'm learning so much from my community. But probably the biggest thing is like when friends have reached out, making suggestions. So, rather than being like, let me know if you ever need help.
Speaker 1:Ooh, don't say that, yes, let's just clear that up right now. Don't say let me know if you need anything, I'm here Cause. What is your response when someone says that, naturally Right, you're like I'm good, yeah.
Speaker 2:Yeah, we're like, well, we're okay, is that naturally right? You're like I'm good, yeah. Yeah, we're like, well, we're okay, we're doing fine. Or like everything inside me is like I need so much help I don't even know what I need.
Speaker 2:So when friends have been so gracious to be like, hey, I know you don't know what you need, could I come over and clean your kitchen on Monday night? And that I probably said no to like the first four times they asked. And then you know, persistent friends who love so well will be like how, about this week? And then it's like, sure, sure, come over. And in my mind I'm like I'll clean with them, it'll be fine, like I'll just clean with them and talk. And then it's like, you know, when you realize, wow, that actually was really helpful, because now I can go do bedtime and then when I get out of bedtime I don't have to clean my kitchen and then help Justin into his bedtime routine, it's like I just gained time and my friends have said like we want to give you time back. Time is what you don't have.
Speaker 2:So, like you know a friend, my neighbor, every time she goes food shopping she's like what can I get you? I'm headed to Whole Foods and I'm like, no, no, I'm fine, but then I'm like, actually we're out of milk. That would be really helpful. So like having people in my corner who are consistent, so I would say like practically having consistency is really helpful so I can plan my life around.
Speaker 2:I will at least have milk because my neighbor Lauren will be going to the food store, or a friend goes to Costco and will ask every time she goes to Costco, or I will have a clean kitchen once a week because friends are coming over. So practically offering up suggestions has been really helpful, because usually I'm Offering up suggestions has been really helpful because usually I'm like too overwhelmed to even know what I need. Or like we have these amazing family members. Like Justin's aunt brings fruit every week. She cuts up fruit and brings mixed fruit to us every week, and then his mom will do laundry for me. Every week she will pick up laundry and now she just goes back and gets it herself. And you know, it's just amazing to have these like consistent pieces in my life where I'm like I can count on you and you're loving me in such a practical way.
Speaker 1:And having that rhythm of okay, like you said, you can revolve your life and your schedule around. Like you know, his mom is coming to do laundry, say, on Friday. And your friend's coming to clean your kitchen on Monday, so you can be like, okay, I know laundry's going to be done, we're going to have fresh clothes on Saturday. So what do I wear today?
Speaker 2:All the things right, friends bring. There's like I'm like, oh man, there's so many examples of ways that people have, like, surrounded us, like we have a group of friends that bring us meals every Wednesday. So like I'm like, we are eating a good meal every Wednesday night and you know, you don't have to cook that day. I don't have to cook. I mean, I forget every Wednesday. But then they text me like a friend just texted me. I was like, I'm bringing it. I'm like, oh my gosh, it's always like the best surprise.
Speaker 2:I mean, I don't know how I'm like what a good surprise. Every week it blesses me. Yeah, there's so many things, Like his neighbor, like our buddy Ben, comes over to stretch him, you know, once a week, and then his other buddy comes over to stretch him every Saturday and there's just like these rhythms that I'm like I really count on them. So if my I guess my encouragement, I mean, and this has taken it sounds like I like have it together, but no, I guess my encouragement, I mean, and this has taken it sounds like I like have it together, but no, that's taken like a full seven years to actually say yes and figure out what's helpful.
Speaker 2:But if you're in a position where you're like I could use help, it is probably worth the effort to sit down and, yes, maybe someone can't make medical appointments for you, but maybe someone else knows how to do laundry, Like identify the things that, like, anyone could do for you and that's something you can take off so that you can focus on. I mean it allows me to like do our insurance and our taxes and our bills and make appointments and so letting people I mean it's so hard to do, but it has become part of our rhythm to like let family and friends do some of these things and it is humbling, it is hard I'm not saying it's easy, you know, and his aunt comes over to stretch or like to care for Justin twice a week and she has done that for years. I mean, just like these people that are stepping in and doing things that are such a blessing. I mean there's so many people that I could highlight that just love well and have shown me how to now love other people.
Speaker 1:Yeah, it's amazing, that is beautiful. I think the other thing, too, to keep in mind, as you're receiving help, is sometimes it's just as much as a gift for the person doing it, because it's blessed. It's more blessed to give than to receive. Right, there's that statement and we want to be givers, right, like you, even saying like, hey, I know I don't only want to receive. Like I want to be able to give to my community as well, even though I'm going through something hard. Like if you take that away from me, I will feel like I'm not operating in. Like the fullness, like it feels confining, it feels like like I want to be a value to others as well. Right, yeah, so when someone's asking to help you, for them, that's a gift. It's so hard.
Speaker 2:It's so hard. It's like hearing you say I'm like, oh, they all say that, and it's like it is hard to accept, but it's, that is what they say. And I know it to be true for me too.
Speaker 1:Well, congratulations. You are accepting it now. Sounds like it took you a bit, but you are there.
Speaker 1:It took me a bit, but yeah, hopefully, to those listening, this can kind of speed track your receiving of service from others. So you mentioned too that the doctor's diagnosis have been three to five years. Right Was kind of the thing. And then you guys have kind of taken on your own avenue of looking for answers. You did a big deep dive into what you know and Justin is what, on year seven now since the diagnosis, yeah, we're at about seven years since symptoms started.
Speaker 2:Yeah, we're at about seven years since symptoms started. So, yeah, we definitely went down the track of like your body is remarkably, you know, god has made our bodies in a really remarkable way to recover. So we really tried to understand the different pathways that were being targeted by this disease and so, you know, it was really cool. Also, I got to know a doctor from a local practice and they would like come over and sit with me because their family was also walking through ALS. So we would like put our minds together. We both did tons of research, so we would like sit down together and, like over a glass of wine, just research and talk through. Hey, this is a pathway we want to target. What could we do to target that pathway? If cells need activating, what are the top ways we could activate cells? If neurons are dying? What are the top ways we could activate cells If neurons are dying? What are the best ways that we could regrow neurons? And so we would like look at the pathways targeted and then try and do some research on how we can be effective to rebuild or regain anything that was lost. So we did a lot of supplements. We did and we've done everything from the range of like you know really you know hippy dippy things to like pharmaceutical clinical trials that haven't been tested yet, and we were like very open to all of it. I mean, it had to.
Speaker 2:I think Justin's only requirement was, like it has to have scientific rationale. Like don't do something if it just doesn't make sense. Like we need to have something make sense because we have limited time. Doctors give you like two to five years and so when you're on a clock you just don't want to waste your time doing things that like aren't are going to be a mess, proven or scientific at all. So, right, we feel like, but we have done the range of things. Um, you know that some error on the side like side of like quantum physics versus you know pharmaceuticals, but um, we have it's hard to and it's this is what everyone, like doctors have a hard time saying. Like this is effective, because it's hard to pinpoint, because you know they would encourage you. Do one thing at a time, so you know it's helping.
Speaker 2:And then everyone in the ALS world is like we don't have time to do one thing at a time, like to waste six months just trying one supplement. So most people, you know, throw everything against the wall and try 15 things at once and they don't know what is the thing that's helping. But Justin and I were like we actually don't care what's working, we just want something to work, like we'll do all the things that make sense and we'll stick with it. But we have done like really heavy detox protocols. We have done pharmaceuticals. We have tried like natural herbs. We have tried. Yeah, we were in a clinical trial that sadly just ended, which we're really sad about because we think that there was a lot of promise to that drug that was being developed. But yeah, we've tried the range.
Speaker 1:Yeah, I always wrap up my podcast by asking what is the bravest thing that you've ever done?
Speaker 2:So to that I would probably say staying is like the bravest thing. I did write a blog on this around our anniversary and just staying, I mean, we have seen friends just walk away and we know people in our ALS community that are like it's just so nice that you have someone on your team that has decided to stay. A lot of people get this diagnosis and get divorced because it's too hard and it is too hard.
Speaker 2:I mean yes, I will vouch. This is too hard for any marriage, but I think the bravest thing I've ever done is choosing to stay when this is not what either of us pictured our marriage to be, or parenting or life in America. I mean, this is like so different from everything we envisioned, but like choosing to stay every day.
Speaker 1:Yeah, I mean, when you get married right, you do your vows through sickness and in health, and you didn't imagine this would be your like today. This would be your reality. Yeah, no way, yeah.
Speaker 2:I also would say like one of the like, most beneficial things that I think we've done in the parenting world is like I have really built up Justin to our children and I don't. Well, actually, it's kind of funny. We joke all the time because now our kids have such a built up picture of Justin that they'll ask me questions like mommy, could daddy lift this house? And I'll look at Justin because we're laughing, because I'm like oh, we have built up quite the picture of you. But they've seen pictures of Justin like jacked, with huge muscles, and you know he could do very amazing things, like he could walk on his hands up a sand dune and he could bench 300. Like he was just a pretty remarkable guy. So yeah, I tell my children all these amazing stories of their daddy because you know he can't even lift his hand or a finger right now, so they're seeing a different version of their daddy.
Speaker 2:However, it is remarkable how children like they are clinging to this version of Justin. That is true, I'm like Justin is remarkable and I tell them all of the stories of their daddy, but now they're like I mean, they think he is Superman. And a lot of times I'm like guys, could you just treat me like you treat your dad, like you are so gentle and so kind with your daddy, but like you are brutal to me, or like I. You know, now we also joke like if our kids aren't listening to me, I'll be like daddy just started counting and they like run to attention. They're like oh my gosh, daddy started counting. Like they run and it's like Justin and I will just sit there and laugh because I'm like I can't. Like you didn't count, I just I just said that. Like yeah, you said one. And they like hop to it.
Speaker 2:Um, but they have such a deep love and respect, which is something we also were like very—like we desired that for our children. We're like we don't want just—like he cares deeply for his children. I don't want you to lose relationship. You are—everything is going to like tear your relationship apart and I really want to like keep it Like I want to do everything I can, and so we involve them a lot with like praying over Justin and I like I think it is a valuable thing to like build up when the entire world is showing them that daddy can't do things, like trying to tell them stories of what he could do or what he wants to do and we share that a lot Like it's breaking daddy's heart that he can't go out there and ride your dirt bike with you or teach you that.
Speaker 2:Um, like explaining to them like this is hard for daddy that he can't do it. Um, so we are really honest with our kids and we've been really intentional to build up this perspective of their daddy, and then we just we just laugh because they I mean, they think he is like a like utter superhero, superhero which is, which is beautiful, and I wouldn't want it other way. Sometimes it like falls back on me where I'm like, you know, not as cool as their daddy, but it's fine, it's, it's you know where I would want it right now.
Speaker 1:Yeah, that's so beautiful and that's something that took effort to cultivate. It didn't just happen, which is important to notate. Yeah, um, and you mentioned several times throughout this interview that you've continuing to have relationship adjustment has been of utter importance to you guys. Um, and in what ways have you done that, which you know obviously looks different than seven years ago?
Speaker 2:yeah, um, it's changed a lot and we're trying to just be like really intentional in each season, like do what he can do. Um, so, like even two years ago, you know, it was changing family and relational activities. So last year was like the summer of walks with the kids, so he would ride in his wheelchair and the kids would bike and I was walking, so I was the one that couldn't keep up, but he was able to keep up with their bikes, and so last year was the summer. This year he can't handle the temperature changes outside, so we aren't doing family walks but we are protecting morning time and he can't participate but he can watch and that's still important.
Speaker 2:So we're just trying to hold on to what we can and in our relationship, like our marriage, it's involving each other in important conversations and moments and decisions and then giving Justin certain things that, like he can do, like he can research on his computer, he can still make specific financial decisions and I might be handwriting out checks, but we're still making decisions together and that's really important for us.
Speaker 2:We are still praying together and deciding things together on how to love other people and how can we give to other people, and so I don't know, each season is different, but it's kind of like, hey, if this is what we can do, then let's lean hard into that, for both the kids and relationally. And then I have been trying to get rid of certain things where I'm like I really want to get back to just wife, like I want to give away some of these tasks that make me feel more caregiver than wife. So we are trying to figure out solutions for you know, certain things like, okay, I have showered you for years. How can we bring in you know, hired help to do some of the things to put me back into wife position and give someone else this caregiving job? So that's been a more recent and, like really challenging thing to navigate because it just means bringing other people into our home. But the trade-off is I get to sit more in the wife role than the caregiving role, which is just important to us.
Speaker 1:It's like a priority and it also takes some of the weight off of you, like you can be more present, like you said yeah. So yeah, that's beautiful.
Speaker 2:Yeah.
Speaker 1:Well, lori, thank you so much for being in the podcast. Is there anything that I haven't asked you, that you'd love to share, or anything you want to add before we close?
Speaker 2:I don't think so. Thank you so much for having me. It was so fun to talk and share a story, albeit hard.
Speaker 1:Yeah Well, Lori, thank you so much for so vulnerably and bravely sharing your journey with us. Thank you for having me. I appreciate it. Thank you for listening to the Once we Dare podcast. It is an honor to share these encouraging stories with you. If you enjoy the show, I would love for you to tell your friends. Leave us a reviewer rating and subscribe to wherever you listen to podcasts, because this helps others discover the show. You can find me on my website, speckhopoffcom. Thank you.