Kristy 0:06

Welcome to Unshaken, the podcast where unwavering faith means real life. I'm Kristy, and together with my husband Tony, we dive into authentic conversations, offering biblical insights and sharing stories that inspire resilience, especially for families navigating the unique challenges of disabilities. Join us each week as we explore faith with family and the journeys that keep us grounded in Christ. Don't forget to subscribe so you never miss an episode. Let's stand firm together. Hi Unshaken family, it's Kristy, and I'm here with Tony. Some things happened this week, or I guess I should say some things came to light this week that got me thinking, Tony as well. And of course, this brings conversation between us, and then, as usual, it comes to you guys next because I think it's really something that's relevant to all of us. So let me start by telling you kind of what happened. A very close family member of mine has a couple of, I think, age-related things going on. One is that she doesn't hear very well and doesn't have mastery of the technology that makes her hearing aids super productive. And her executive function is slipping. This week, a situation came up where we've kind of discovered her bill management situation hasn't been ideal. Things like that are happening. They're coming to light. In addition to, you know, just like regular life stuff, this is something that's been really, it's kind of been heavy with Tony and me kind of trying to navigate solutions and just be supportive and figure it out. But what I'm realizing is that in the world, I am advocating for her. And in day-to-day situations, I feel like I'm advocating almost with her for her because she doesn't realize how some of the things she's doing are self-sabotaging, because I think that's part of the condition, right? And I think what that means is it becomes like all pervasive. It's constant and it's exhausting. And I love her with all my heart. I can't express to you how much, but man, it's exhausting. I'm a mom of some young adults that are just launching. And again, it's advocacy. I have three kids that have mental health struggles. It is advocating for them, going ahead of them in the world and saying, hey, this is a situation. But also now they're adults. So not really being privy and not being able so much to speak directly into their experience. But again, it's that advocating, like, hey, are you thinking about this? Are you aware of this? I need you to do this. Like, this is really important. What I am feeling right now is just that everything is really heavy. My thought, and I think Tony's too, he'll he'll hop in here in a minute, is that maybe you guys feel this way as well. Because I think any of us who deal with disability or really any sort of chronic illness or just the natural process of aging, I mean, it's tough. There's so much of this that happens.

Tony 3:25

One of the things that comes to mind, and I'm sure, Kristy, this comes to mind for you as well. For me, it's about energy, and it's an energy drain. There is so much energy that goes into this advocacy lane for all of my life. It was so primarily focused on advocating for myself and advocating in the different environments that I had to be in in order to just move through life. But as I've gotten into ministry, as I've worked with FCA and our all ability space, we moved into this unshaken space. Working with families and working with different organizations like Johnny and Friends that we love so much, there's so many other spaces where advocacy has to happen. There's so much energy that is expended. There's just such a heavy weight when it comes to always having to explain. There could be days where I'm just repeating myself two, three, ten, twelve, twenty times, and it's the same things over and over and over again. Sometimes it's not verbal, sometimes it's it's in forms where you're filling out paperwork and there are things where like you have to write the same thing over and over and over and over again. On those days, I'm praying that there is a digital version of it so that I've got the ability to just hit copy and paste.

Kristy 5:03

Well, because isn't it ironic that the the chronic situation that makes you need to fill this out makes it really hard to write?

Tony 5:12

Exactly. And yet so many of our systems are still paper and and pen. Our systems are not catching up, whether it's our school systems, difficulties with our churches, whether there's difficulties with our medical system, the list goes on and on. There's just so many spaces where the overall feeling is just having to always prove something. Instead of just saying, here I am, this is what I have, this is what I need, or here are my friends, this is what they need, and simply going forward in a way that provides for their needs. But instead, we have to jump through countless hoops in order to prove that what we say we need is what we need.

Kristy 6:10

People should not have to jump through hoops to secure the things that are basic needs in life.

Tony 6:17

There can be such a loneliness in having to constantly explain things because when you are the one that is advocating, in a way you're translating either for yourself or on behalf of someone in order to make something happen and over time that just wears a person out. It's just so tough to be in that spot, but it's not something that any one of us wants to admit as far as when we are advocating, because if we admit that we are drained or that we are tired, then what comes right behind that? It's guilt and shame, and I can't believe I just said that because I love this person so much. It's not that we don't love them or that we love them less because of the advocacy. It's just literally such an energy drain that doesn't need to happen all the time.

Kristy 7:25

So, yeah, I completely agree with you. I I think being tired doesn't mean that you don't care, right? This emotionality around all of this is so I think it's so complex because I think there's a whole lot of things going on at the same time. There's that love and there's fierceness, protectiveness. These are our people, whether it's your family or friends or people that you don't even know, it's somebody who is potentially marginalized or whose rights aren't being recognized. It's just that fierceness that rises up, you know, when you're trying to advocate for somebody to have what they need. And it's draining, like that sort of vigilant, always on duty, always playing offense, it's tough. It really can wear on you. There's the guilt that Tony was talking about. We do feel guilty because we're tired. It's my honor to advocate for my family, for my kids, for my parents, for my husband, for you, for kids with disabilities, for my students. Um, you guys know my students are all on the autism spectrum. They have really significant motor and sensory differences. And I feel like sometimes all I do all day long is advocate. I'm trying to raise money and explain why we need money for a sensory room or for things that the general public thinks are toys, but that I know are regulation items. Um, it's exhausting. And then I feel like, seriously, Kristy, like, how cold can you be that you're saying it's exhausting? Because I think for me, and Tony, I probably think probably for you too, advocacy is part of the demonstration of care.

Tony 9:07

It absolutely is. And I think it's important to note that when there is this fatigue, which is what you and I have both been talking about here, fatigue is not the opposite of faithfulness. We can still be faithful and still be tired at the same time. I do it every day. There is no shame in the exhaustion, because the exhaustion means that you are continuing to show up. So there's meaning behind the exhaustion because if you weren't showing up and if you weren't advocating, there would be no need to be tired. If you are in that space where you feel like it's an endless loop of advocating 24-7, and you are exhausted, let me say to you, we are so proud that you continue to show up and you continue to advocate for those that you love and those that are important to you, because that is so vital to those that you love. If the advocation was not needed, then we wouldn't be here. But it is needed, so we are here, and so we continue to show up.

Kristy 10:36

I completely agree. I would add that if someday comes and you just need a little minute, you need a break, taking a pause, resetting yourself, restoring your energy, just saying, like, I'm not fighting today. You know, if today I'm gonna sit on the couch and we're gonna, you know, if we're gonna have a totally chocolate dinner and we're like we're opting out today. I don't think there's any shame in that. I think that is, I think it falls under self-care. And self-care is what allows us to continue to advocate on the days when it's hard. I know for myself, sometimes it just builds up, right? It's bureaucracy, it's paperwork. It's hard. It's everything that you do, like in every avenue of life, you know, whether it's um on behalf of yourself or or a kiddo, or if in my case, my students, my kids, my parents, my husband, myself, there are days where I have just thrown up my hands and just cried out, like, could anything please be easy? God, could one thing please be easy? And he looks down at me and says, No, but you can take a break. I think that's kind of pretty real for all of us.

Tony 11:53

It's just learning that taking a break is not quitting, it's not giving up, it's not saying that you don't care. In a lot of ways, taking a break actually says that you do care because taking a break means that hey, I need a pause because I need to recharge, because I want to get back in and continue to advocate again. I just got nothing more to give in this moment. So let me take a break, let me recharge, let me refuel, and then I'm gonna jump back into keep doing what I've what I've been doing, which is advocating either for myself or my family or for whoever in that moment needs needs advocating for.

Kristy 12:40

Something I wanted to kind of bring up also is that all of these small moments where advocacy is required, right? It's when you take your kiddo to the pediatrician's office, and maybe you have an immunocompromised little one, and the kid next to him is hacking their head off, and you're like, could there just be a separate space? Or could we please get that kid into a room? Or could we please get my kid into a room? Maybe it's parking. Some jerk parked in the handicapped spot and you needed it because you've got a wheelchair, you know, and a stroller and whatever else is going on. It's just one thing after another. You leave the pediatrician's office and you go to just stop and get some lunch with your kids, and that's a fight because the tables are so close together, because they're not thinking about a situation like this where just everything, every little thing is difficult. And I think we can find ourselves in a situation where we are living braced. Even when nothing is happening, we know that the if we just get up and move, the next thing that happens is also going to be hard. And I think that can become a really detrimental, I want to say dangerous. I don't, is that the right word, Tony? What do you think?

Tony 13:56

Living embrace is not just about stress, it's really a learned kind of posture. Our body gets to a point where we can no longer relax. We're always on edge or always on alert for the next thing because our body has learned to expect another fight, expect another difficulty or whatever. And when you're in that sort of space, now you're dealing with things like anxiety, you're dealing with irritability, you're dealing with tired exhaustion, spiritual exhaustion. And let me tell you, when there is that spiritual exhaustion, that's where the devil is looking to pounce. John 1010 tells us, you know, the devil comes to kill, steal, and destroy, and he's prowling around looking for those cracks. We have to get to a point where we are advocating for ourselves and saying, I'm taking a break because I don't want there to be any cracks. I don't want there to be those places where something can happen that affects my marriage or my family or my community around me.

Kristy 15:15

I completely agree. I think it's um anticipating the things that are going to happen that are gonna be tough and knowing that it that everything is gonna be a tough road, I think it can prevent us from having peace in the moment and it can affect connectivity. I think that's kind of what you're getting at is it can really get in the way of pausing and connecting with the people that we love in the here and now. Like people say don't borrow trouble. And the thing is, it isn't borrowing trouble. You know it's gonna happen. This isn't uh just in case, it's a prep for before this happens, you know? But at the same time, that constant vigilance, that constant state of, I don't want to say fight or flight because it's not quite, but it almost is, right? It's that like it's just the knowing that I'm the next thing that that happens is gonna bring another battle. Like Tony said, that's bad. It's not good for our bodies. Like the hormones that come with that, I mean, it's that cortisol thing that we read about all the time, you know. I mean, it's terrible for us. It's terrible for our bodies, it's terrible for, you know, for our regulation, it's terrible as a result for our relationships. I'm not really sure how to combat that yet. If you guys know, please drop us a line and let us know. I mean, that hypervigilance that I think so many of us carry in this space really is unhealthy. But it's also necessary, right? For me, I think the thing that I know can help, it's really the only thing that I know can help, is just it's prayer. It's to lean into the one that has the power, to ask for the energy, to ask for peace, to ask for that he would go before us and just clear a path, make it, you know, make a way and just to protect us, right? To protect our bodies and our minds and our hearts and our spirits in this world where so many things are a fight. Like please create time and space where there is peace, where there's just that feeling of peace that only he can bring.

Tony 17:24

We need to understand, and this is so hard to do from a practical standpoint, but not every battle deserves full energy. You know, I need to be clear here. This is not about just pick your battles better. No, no, no, no. It's not about that. It's about stewarding the energy reserves that you have in such a way that you are doing things wisely for yourself versus just, oh, just be smarter about it. It's not about being smart, this is not about intelligence. This is about stewarding what God has given us so that we can best advocate for ourselves, for our families, and for those around us, that's worth taking some time and thinking about where are we going to push forward and where are the things that we are going to let go? Because in the grand scheme of things, it's not gonna matter. And understanding can we get the things that we need documented so that we're not having to carry everything in our heads. And I'm really, really, really bad at this. I carry everything that I have to do in my head, and Kristy's always saying to me, Tony, write it down. And I've tried to get into the habit, especially at the end of the day, when I'm done and like right before I go to bed, I try to write everything down so that I dump it out of my brain. So that I know that I don't have to remember it all, it's there, and then I can work on that list the next day. So can we get the documentation that we need? Can we ask clarifying questions so that we're not walking around with the confusion of what if and what if and what if. Because I think if we get the clarity, then we know where the path is. We know how we're going to go forward because we have that clarity. And then realizing too that not everything has to be escalated. There are things that can be handled quickly with a single phone call. All of this comes down to knowing what energy you have and deciding for yourself and for those that you are advocating for where to put that energy and how to distribute that energy in the best way possible.

Kristy 19:57

It feels like a silly example, but I'm here to tell you. It really frustrates me to no end. You guys, we probably have said a million times, um, a few days a week, Tony will go and he'll work at the Starbucks. It's like a quarter of a mile across the street from where I work from the school. And then after school, on those evenings, I usually leave and I go over, and Tony and I work until eight o'clock when the Starbucks closes. And it's it's a way that allows us to sort of collaborate on things, and then the closing time comes, and then we have to stop working, and then we come home and are, you know, regular people again. Every single night that we are at this Starbucks, those kids they want to get out of there like they're trying to close. And every single night, if they mop that floor while we're still sitting there, there's a million other things that still have to happen. But I'm gonna tell you, at seven minutes or 12 minutes to eight, those kids are mopping. And Tony walks with a crutch and it slides readily on a wet tile floor. And I have mentioned it over and over and over to these kids, like, can you please wait? Can you please just leave a path to the door? Can you please, can you please, can you please? And even now I'm amped up about it. It just bugs me so much. But I could also just mention to the manager who we're like practically friends with because we're there so much, and just be like, hey, could you ask your guys to please not mop until the store is all the way closed? That would take care of it. I don't know why I haven't done that. It kind of feels like escalating it too much. Like I just kind of want them to do the right thing because it's the right thing to do and maybe not me not have to tell on them. I don't know. You know, of all the silly examples, like, how many days am I gonna fret about that? They mop the floor and we will just sit there and wait until it dries. And quite honestly, those kids are so good to us. Like, if I'm not there, they'll bring a drink over to Tony instead of having him come get it because it's tough. Or we come in and they say, you know, hey, Chris. Kristy, hey Tony, how's your day? And they call us by name. Like they know what we're gonna order. Tony and I, like when we leave each other, we always say, best day ever. And now the Starbucks kids are saying, like, best day ever. And still, like I'm not able to let that one thing go because I'm so afraid that Tony's gonna fall. And it's just for me, I almost feel like I'm letting him down if I don't fight that battle at 10 minutes to eight every evening and have them not mop the floor.

Tony 22:28

I get it. You know, those those kids that they want to get out of the store as as quickly as they can. But they are kids, they're they're teenagers. They're not thinking of all the things that we think of because of the perspective that we have for them, they don't like cleaning, so they want to get that cleaning part out of the way.

Kristy 22:50

But it's the same with my kids. So um, if my students, sorry, I always call them my kids. Um and nobody told me that when I took this job, I was gonna love them that way, but I do. And I think that's why it's so hard for me to never stop advocating for them either. If like we've talked about the presumption of competence and how, you know, we just assume that all of our kids are brilliant. They're completely intelligent, able to learn. The world kind of discounts that. And so we fight that battle with the terminology that's used sometimes. I don't know how many times I have had this conversation around people will call my kids nonverbal, and they don't mean anything by that. It is the standard accepted term non-speakers say nonverbal. The parents of some of these kids still say nonverbal. But for me, it's such an important distinction because they are verbal, they understand words, they understand language, they think in complete sentences, they can type in complete sentences. The only thing that they can't do is make their mouths move in a way that lets them say the words. And so they are non-speaking, they're not nonverbal. That really bugs me so much. And it shouldn't, like, because like I said, it's just it's a commonly accepted term, but I just feel like it takes something away from them. And I like I always want to advocate. I feel like they're already underestimated in every area of life. Like that's if that's one fight that I can have for them, I just want to have it every time. But at the same time, how appropriate is it even for me to like to pop in with my little, no, I think you mean non-speaking, not nonverbal, you know. There's gotta be a line, right? There's gotta be something reasonable where we don't fight every battle and we don't, you know, become the clanging, what is it, the clanging symbols? Clanging gong. Clanging gong, yeah. But that's hard. Like that's it's really hard for me to let that go. It's kind of a balancing act, right? It's advocating for others and protecting them and protecting their rights and defending what they should have, defending their need for it and all of those kinds of things, versus also advocating for yourself, drawing a line where where things get unreasonable. And it is choosing your battles, it's it's using your energy wisely. I think it's it's being a good steward of the energy and the mental and emotional space that we have. At the end of the day, we are parents for friends, we're spouses, we are advocates to the core, some of us by nature of how we live and the people that we're we're related to and the people that are around us. Some of us were advocates by career choice, by professional field. And I just really want to say that even though it sometimes feels like all you do is advocate, and that is really all that you are, the fact is you're not. In everyday processes, it's easy to kind of lose pieces of who we really are, because we know that the need is so great. And we know that there aren't enough people out there advocating. And so we feel responsible, we feel almost accountable to do what we know is right because we know that somebody isn't coming behind us to do it if we don't. But at the end of the day, we're people, right? We're not just managers, we're not just advocates. It's only a small part of how we love in the world and how we care for the people that are part of our world. It can be really tough in functional ways like regulation. And I think it's because this week I am struggling with emotional regulation because I'm about at the end of the line with energy and things like that. And so I'm trying so hard to choose, right? To use the energy that I have in the smartest ways that I can. But you're still a person, you're still a man, a woman, you're still a parent, you're still a friend, and you still have needs as a human person functioning in the world. But also beyond this world, you are so much more to the one who created you than an advocate. It might be a skill that you have, it might be a gift that he's given you, the gift of advocacy and of putting the needs of others first, fighting for those who can't fight for themselves. I was just doing a project around Proverbs 31, 8 and 9, and it's around advocating for those who can't advocate for themselves. But God sees us as more than that. He made us as complete people with other skills and abilities also, and with other human needs and with a need to reconnect with him for our recharge. And if we don't make time and if we don't make space for that in the ways that he's given us on earth, like spending time chilling out with the people we love instead of just advocating for them, if we can sit on the couch and watch a movie with them too. But also going back to him and recharging in relationship with him and taking those burdens to him and saying, like, look, this is really hard. Like, I feel like I'm not making any headway. Can you please help or can you please carry me in this in this season? Because I'm really struggling. Because again, he made you for so much more. He made you for so many purposes, you know, beyond just advocacy.

Tony 28:30

God did not create parents, spouses, or caregivers to become nothing but managers of need and advocacy. Advocacy may be part of your calling in this season of your life, but it's not your whole identity and it and it never was meant to be your whole identity. There's still a person underneath all the paperwork, the emails, the appointments, the fights. There's still a person that God loves and created in a unique and wonderful way that is still there and has value outside of the advocacy space. There are a lot of people that I've dealt with, especially in in my adult life, where I've been accused of being too emotional and too passionate. There are times when those things are true, but that doesn't mean that I am that way all the time. There are a lot of times where I'm very chill and I'm very calm because I want to be a calming influence to those that are around me. And I want to be stable and solid and unchanging so that others that are around me are able to rely on that steadiness. Like my wife. I want my wife to see me as a rock for her when she's emotionally dysregulated because she's had a tough week of advocacy for everyone that she loves and cares for, including all of her students at at her school. Like I want her to be able to come home and find rest with me. Letting her have time to just breathe and recharge. And I talked about the first half of John 10 10, but I don't want to let this episode go without mentioning the other half. Because yes, the devil comes to kill, steal, and destroy. But the other half of that says, But I have come, meaning Jesus, to give life and to give life abundantly. If you are advocating and that is part of the season of your life, just know that Jesus wants that abundant life for you as well. That means that there's more than just advocacy.

Kristy 31:06

When it comes to advocacy, um, I would summarize by saying that the work is important. It matters so much and it accomplishes so much, but it is not meant to consume you. It's not meant to be all that you do or all that you are. And if you're tired, friends, if you are tired and you can relate to this and you you feel like every day, every road is tough because all you do is fight for the rights of someone that you care about. If you're tired, you're not failing. If you're tired because you keep showing up, you're tired because you're consistent. If you're tired because it's hard, and that's okay. It is okay to be tired, and it is okay to take a step back and to fight a little less, or or maybe just to not fight every single battle, every single day. That is okay. And when you are exhausted and when you've just gone to the mattresses for whatever person or or resource or situation that you're advocating about, when you're that done, when you're just your goose is cooked and you're exhausted, God sees your exhaustion, he sees the fatigue, and he also sees the fight, he sees the worthiness of the work, and he's gonna back that.

Tony 32:28

God is not only present in the moments where you feel strong and clear and composed, he also sees that sigh after the email, the tears that come after the meeting, and the quiet decisions that we make every day to get up out of bed, even when we're exhausted. But we get up anyway, we show up, we keep loving, because that's just what we do.

Kristy 32:59

Yeah, and he loves you, and we love you. You wanna go ahead and pray us out, babe?

Tony 33:05

I'd be happy to. Father, we come before you today, just so thankful that we have an advocate that goes before us to intercede on our behalf when we are at empty and we don't have the words. Father, thank you for being so loving that you are just abounding in grace that you want to give us rest in you. Thank you for your son who died on the cross for everyone. Thank you for the honor of this calling that you've given so many of us in this space to advocate not just for ourselves, but really to advocate for others that may not have the the motor skill to be able to advocate for themselves. So we're honored to advocate for them. Thank you, Father, for the ability to do that and for the ability to keep getting up and showing up each and every day. Thank you so much for your son. And we pray all of these things in his name. Amen.

Kristy 34:15

Amen.

Tony 34:17

Thank you guys. Hope you guys have a great day and a great rest of your week, and we will see you next time. Bye, friends.