In a poignant narrative shared by Missy, the journey through her daughter Janess's battle with Aicardi Syndrome resonates deeply, unveiling the profound intersection of personal tribulations and spiritual enlightenment. Within the embrace of a supportive community and fortified by unwavering faith, Missy recounts the arduous path of navigating Janess's complex medical needs while holding onto moments of profound joy amidst adversity. Their story is a testament to the resilience of the human spirit and the transformative power of faith, where even amidst life's darkest trials, there exists a beacon of hope and a reaffirmation of the enduring goodness of God. Through their odyssey, we are reminded that amidst life's uncertainties, faith not only sustains but also illuminates, offering a pathway to profound peace and unwavering joy.
0:00 - Stories of Transformation and Freedom
16:27 - Exploring Faith and Spiritual Journey
31:31 - A Personal Journey With Medical Complications
40:59 - Processing Seizures and Grieving Diagnosis
44:59 - Parent's Journey With Child's Medical Condition
55:57 - Parenting a Child With Special Needs
1:01:44 - Restoration and Hope
1:10:13 - God's Goodness and Freedom From Condemnation
1:23:24 - Understanding God and Overcoming Challenges
1:32:33 - Thoughts on Death and Salvation
1:41:30 - Finding Peace and Strength in Faith
1:49:21 - Encouragement and Hope in Trials
💰 DONATE & SUPPORT our Ministry: lovereality.org/give
👍 LIKE us on Facebook: https://www.facebook.com/alovereality
📷 FOLLOW us on Instagram: https://www.instagram.com/riyoung31/
📚 LEARN more at our site: lovereality.org
In a poignant narrative shared by Missy, the journey through her daughter Janess's battle with Aicardi Syndrome resonates deeply, unveiling the profound intersection of personal tribulations and spiritual enlightenment. Within the embrace of a supportive community and fortified by unwavering faith, Missy recounts the arduous path of navigating Janess's complex medical needs while holding onto moments of profound joy amidst adversity. Their story is a testament to the resilience of the human spirit and the transformative power of faith, where even amidst life's darkest trials, there exists a beacon of hope and a reaffirmation of the enduring goodness of God. Through their odyssey, we are reminded that amidst life's uncertainties, faith not only sustains but also illuminates, offering a pathway to profound peace and unwavering joy.
0:00 - Stories of Transformation and Freedom
16:27 - Exploring Faith and Spiritual Journey
31:31 - A Personal Journey With Medical Complications
40:59 - Processing Seizures and Grieving Diagnosis
44:59 - Parent's Journey With Child's Medical Condition
55:57 - Parenting a Child With Special Needs
1:01:44 - Restoration and Hope
1:10:13 - God's Goodness and Freedom From Condemnation
1:23:24 - Understanding God and Overcoming Challenges
1:32:33 - Thoughts on Death and Salvation
1:41:30 - Finding Peace and Strength in Faith
1:49:21 - Encouragement and Hope in Trials
💰 DONATE & SUPPORT our Ministry: lovereality.org/give
👍 LIKE us on Facebook: https://www.facebook.com/alovereality
📷 FOLLOW us on Instagram: https://www.instagram.com/riyoung31/
📚 LEARN more at our site: lovereality.org
The world doesn't think that the gospel can change your life, but we know that it can and that's why we want you to hear these stories, stories of transformation, stories of freedom, people getting free from sin and healed from sin because of Jesus. This is death to life.
Speaker 2:I remember I was giving Janessa Bath one night and she started having a seizure really hard, like just throwing her legs and her arms in the water and like water splashing everywhere, right, and I'm trying to like hold her up so that she doesn't drown, you know, in the water and I'm just holding her and something just broke in me and I was just like yelling and like crying, obviously, but yelling like I hate you, I hate you. I was yelling at God, I hate you why?
Speaker 1:Yo, welcome to the Death to Life podcast. My name is Richard and this episode is with my sister, missy and man. I've known Missy for a long time. I've been impressed by her faithfulness, but in hearing this story, this story is about when things get hard, and that's the thing. God doesn't promise that it won't be hard. He actually promises that there will be suffering. And if you've ever been there and you've been at that place where, like God, like I'm not sure if I like you right now and you're upset, this episode is to show that you've never been alone. You have never been alone and Missy is going to share her testimony of God being there through the trials, and so I think you're going to really appreciate it. I think it's going to be encouraging and edifying to you. Let's listen to Missy, buckle up, strap in love. Y'all Appreciate y'all. So where does this story start for you when it comes to spiritual things and God in your life?
Speaker 2:Sure, I think a lot of people say well way back to when I was a kid or where it started. I feel like for me, I've been thinking about it and I feel like it's something that of course, began when I was a kid, because you learn things as you grow. So whatever habits or the way that you process or what you think about, how you think about things, that's what you learn. But I had a great childhood, great family, great church family growing up and I don't think when I hear stories like people talk about they're great transformations from addiction and all of these things, I always have felt like I don't really have a testimony. I used to think that I used to think I don't have a testimony because nothing bad has happened to me, everything's been fairly even keeled, and so, thinking back, I was trying to find a moment to enter a time where it started. But I think I don't know. I just I think, just how I position myself, what I learned, it wasn't even that it was taught to me. Like I said, my parents were wonderful and never did I ever get from them that Jesus doesn't love you or you need to do this in order for him to love you. I mean, I think as a kid you sometimes kind of just maybe extract that from situations, even if it's not what was meant or whatever. Like I think about, for example, because we were fairly conservative, I would say, growing up. I grew up in Northern Minnesota and just very sheltered, probably, and went to elementary school there, at the small school in Bemesie, minnesota, and just my dad was my teacher, like everything was just very, I don't know, concentrated as far as who you interact with church, people, friends and stuff like that. Everyone was Adventist. And so I just grew up in that situation and I think about things like and this is not my parents fault, but like, for example, we chose, or my parents chose, like, okay, say, we went on this camping trip with our church, family or whatever. For the weekend we went to the lake because Minnesota has lots of lakes so we often go camping by a lake and then people go swimming on Sabbath right. And my parents chose and told us kids, we're just, we're not going to do that, and I think I actually respect them for making that decision and holding to it, Even though that's and they never meant it as like this is a salvation issue. It was just something they had to draw the line at and for them, that's what they did. We didn't go to movies for the longest time, all those things, and that was back in the 80s, when the stores were a little more taboo, right, but 80s and 90s, but anyway. So, yeah, I just trying to think back. But little moments like that where I think I probably extracted oh, if I do this, this means that I'm not following what God wants me to do and that he doesn't maybe like me or appreciate me when I do those things.
Speaker 1:We grew up I think we're in the same high school class, so we grew up in the around the same time. And here's the thing two things can be true at the same time. One thing is our families raised us right. They're beautiful people that love the Lord and there's no shame in having an amazing family that loves you. There's no shame in not having to go through drug or alcohol addiction or something. That's awesome. And I think that the more we're loved by our earthly parents, it's easier, much easier, to see the love of the Father. So that's true. But then also the fate tradition that we have grown up in it has changed what we really believe, like the 80s and 90s, what we even used to believe about divorce, like I remember hearing about divorce as a young boy and I didn't understand it and I was like what is that? And back in the late 80s, early 90s, there was questions about salvation in regards to divorce, like if you get divorced, what does that mean? I remember we grew a vegetarian. I remember being on a road trip and my dad ordered chicken and we didn't know my dad didn't grow up Adventist. We're just kids. We didn't know he didn't grow up Adventist and he's eating the chicken and we're pointing at him like bro, like you're in trouble, what are you doing? And so our church, like our faith background, a lot of stuff has changed and still there's some. You know righteousness by faith is always trying to grab ahold of and see, like, what does this actually mean? So, I'm imagining, is that kind of similar to your story?
Speaker 2:Yeah, for sure, I think, just trying to grasp and understand. Like I said, you know, as a kid you're just like extracting all these things out of your experience, and so you just kind of formulate in your mind oh, this is what it must be. You know, and like I've always yeah, I've just, I've never had somebody tell me you, I don't know you need to work in order to get salvation or anything like that, but I just kind of made that in my mind, I think, like it just appeared.
Speaker 1:You know, I don't know it's so weird and so, but I don't think it's a mystery, like, if we really look at it, like you went to a boarding school I taught at a boarding school what used to be really strict on it still kind of strict on it and let's say like you're going to Vespers and your skirt length has to be a certain length and you want to wear what you want to wear, and you're about to go out the door and the dean stops you and says no, you got to go change, While the dean didn't say this is a salvation issue. She does represent the academy, which represents something deeper and bigger, and so you get this resentment and it's tied to Christianity. Yeah, and it's like it just is.
Speaker 2:Yeah, and that's so hard. I've thought about that as a teacher because I've taught for I'm not teaching currently, but I before this, I taught for 15 years in our schools and and it's so hard because you do have to hold a line but at the same time getting the kids to like understand why, you know, I think that's hard because then they do tie it to something that it isn't salvation, you know, or whatever. So, yeah, I totally, I totally get that. So I, I think just the fact that I was immersed in Adventism, you know, from a young age, just, and this is strange to me, I don't understand why, why I never really, why it wasn't taught to me. I don't know. I'm sure there's experiences that I've had, like I go talk to my sister sometimes and I'll say you know, do you remember this? She remembers all the details and I'm just like, oh yeah, of course now I remember when she talks about it. But so, yeah, I think, just, I don't know, it was just this, I don't know this beautiful, upbringing it in my mind yeah, really great. I mean again, there was nothing, you know. And I remember thinking, as I got older, like nothing bad has happened in my life, like what?
Speaker 4:like no major.
Speaker 2:You know there's things you know but like, not this huge event that like had it made me have this. You know this turn of events or anything like that. So yeah it, I don't know. I was really blessed. I would say Overall I went to great elementary school, great Academy, you know, had great friends, you know, and I think just all the things that you deal with as a teenager come into play. Boys, you know, you know self. Worse, like what, where do you find yourself? Worth A lot for me was in what people thought of me. I was very much a people pleaser, very much a rule follower. I didn't ever stray that course for the most part.
Speaker 1:There were a couple of experiences that I had where then I feel super guilty, you know like tell me about one of those where, oh man, you knew you shouldn't have done it, you did it and you're like God, it's gonna kill me, or was it my dad's gonna kill me? Which one was?
Speaker 2:it. Well, bose, probably no. I think, like I don't mean that I was a rule follower, right. I'm trying to think of one, just one that pops into my head, like, so I started, you know, in Academy. It's just like you have these relationships but you're dating someone, but it's just like on campus, you know, it's just kind of weird or whatever. So my junior year I was dating this guy. I started dating this guy and I think at that point, like I'd never had my first kiss or anything like that, you know, just super conservative and, yeah, protected, and all things anyway. And so, like I started dating this guy and I was leaving to go on a music tour because I was big into music, right. So like, leaving to go on a music tour, he didn't go because he wasn't in music and I was going to the cafeteria. I don't remember, I think I was coming from the cafeteria, maybe to go to the dorm and he was going to leave and we weren't going to see each other for, like, the weekend, right, so. So so like, right in front of the girls dorm, between the girls dorm and the cafeteria, you know, the campus so you know what I'm talking about kind of by the parking lot area. Sure, he like we were saying goodbye and he just leans over and gives me a kiss and I'm like, okay, this is like on your mouth.
Speaker 1:Yeah, On campus where the teachers can see where Swani's going to jump out of the bushes.
Speaker 2:Right. So, you know, I was like, well, you know, first just like, oh my goodness, I just had my first kiss, or whatever. But then, you know just so. Then later I don't know how this even happened, but the cook, who knows my family from when I was growing up, right, she saw me and she leaned over and she's like just be careful about where you kiss, on campus, or something like that she said something to me. She saw, apparently, and I was like, oh, so embarrassed, right, like I don't get in trouble. I'm like a leader on campus, I'm, you know, my junior year, like I don't know. So I just was like, so, you know. So I couldn't believe that that had happened. But anyways, so that's just like one experience that to me. Six, I was like, oh, I broke the rules, you know. Oh, no, I'm gonna.
Speaker 1:People are gonna think plus if you would have gotten social if you would have died, if you got put on social.
Speaker 2:Yes, I never. I don't think I was ever put on social. I came close a couple times, but never.
Speaker 1:So, yeah, it was just you know, those who don't know. When you go to a boarding school, there's this thing called social if you're getting too close to a person of the opposite sex, and the staff gets wind of it. Now we have cameras in these places, like, if you see, like, then you, you, the students get put on this thing called social and they can't even speak to each other for like a period of like, either a week or two weeks, depending on the infraction of the rules. And some people don't care and some people are mortified by it, right?
Speaker 2:Like she could. She could have put me on social right, but she didn't. She just gave me this little and I think that was she knew for me that that was enough for me to be like oh shoot. You know. So I wasn't sneaky like that, I never, you know. I just it happened and I was like oh my goodness, you know so.
Speaker 1:So, as you're going to college, I think the curriculum for Bible towards the end of high school is I think there was a section on it's who you know there's. They're talking more about rights. Is my faith. They're also talking about family. You're heading to college. Who is God at this point? Like what is his main like? What are you thinking about him and how did he feel about you? Sure?
Speaker 2:I think, just in general, my relationship to God was always kind of up and down, you know, like if I was reading my Bible, if I was praying, then I felt like, okay, we're good, you know God, and they are good, but it was never super consistent. You know, life, life gets crazy. You don't do it or you choose to invest in other things rather than that. You know, and I think that's man, life in general is just up to up to a certain point. That was always my experience just like kind of, you know, back and forth, I would have these highs and lows, which I think is a normal thing, obviously, you know, but just just these highs and lows of like, okay, well, if I act this way and do this, then that means God doesn't. I don't know if I ever said the words he doesn't love me, but like he doesn't like me or he doesn't approve, which maybe is true, but you know what I mean Like just what I was doing, really, the way and also the way that I just positioned myself to him, like just, you know, if I did something wrong or if I didn't spend time with him or I wasn't feeling connected to him, I would just, oh, please help me, you know, and just really, not that that's wrong or bad, but just the way that I positioned myself I think was really is different, you know, and not not in the right position.
Speaker 1:So God felt a certain way about you depending on how faithful you had been to devotionals and prayer, and I don't think that's strange at all. I worked in, you know, education for I don't know how many years 15, 16 years and when you're dealing with young kids, the prayer like I just remember being in a Sabbath school and they're like I just want to get closer to God. He needs to help me. And I haven't been reading my Bible and I'm afraid that we have positioned it as you know. It's not about what you do, it's about if you read the Bible and then we judge our spiritual experience on how faithful we have been to reading the Bible. And while reading the Bible is great, reading the Bible will not save you and there is no point in it unless you believe what it says about you. Like we don't get extra brownie points for reading the Bible. It's like if you go out on a date with your husband and you're like, okay, we went out on a date and you didn't actually spend any time being intimate and sharing a story or talking, it's just. But that's. I feel like that's how young people think and I'm afraid sometimes we haven't helped it as much as we could have right.
Speaker 2:Sure, yeah for sure, yeah, like I said, I had these moments of like, real strong like, and I know I've heard other people say this like at weeks of prayer and you know, and you feel so high, you feel connected, but I still feel like I didn't. I didn't, I don't know if I really believed or understood who God was, which is so strange to me because I was in all the Bible classes, I was in all the you know, like I didn't really. I had the, maybe the head knowledge, but not the heart, the full, I don't know. It just didn't seem connected all very much or like you know. So you know, college is different in a lot of ways, but I was, I was connected and dating one guy for a long time, you know and like. So that was a lot of my focus there too. And but as far as like who God was again, go to church, you know, go to chapel, go to Vespers, and I loved those things and I was involved in those things and I, you know, had positive experiences with them, but it just never was like. It seems weird to say, but it was never like my experience. It was just where I was and who I was with, and that's just what we did maybe, but you were a spiritual person.
Speaker 1:in this way, if they don't get in trouble and if they show up to the church and Vespers- if someone is showing up to church and Vespers and they don't get in trouble then that's a spiritual person. So I saw you, you were in Unionaires. You had the main solo in Unionaires. You showed up to Vespers. You showed up and it's about showing up and not getting in trouble. And so I'm like, oh, yeah, like that's a, that's a spiritual person and I mean it is what it is. Yeah, you were in my eyes. You're like, oh, she's a spiritual person, yeah, but it's so when we're so young and I'll blame a lot of this on you know, us being kids we don't think we're kids at 18 and 19, but we're right, emotionally immature. That is what being spiritual is right. Yeah.
Speaker 2:That's so crazy. I think that was my experience, even after college was done. I mean, I left Union, I went to Andrews, I, you know, studied, finished studying there and I would say similar experiences there, mountaintop moments, you know, just these up and down kind of times. But I still think, like I think God, god was there right, and God, I felt him and I knew that he was leading me, but it was still kind of just this, I don't know surface level type thing or I don't know how to describe it. So much, just not very deep not. And I still have these moments where I questioned, like questioned, you know, who he was or if he was real, and I would say that, having later on in my experience, more so, but, like you know, there were those times too, but he was there, like I never, never, like disowned him, you know. I should say that I probably said that wrong, like I never was, like, you know, pushing away or anything. But yeah, it was just kind of part of who I was.
Speaker 1:So many people are like that, Yet they don't have the background that you and I have had. There has been no question in my mind that if I would ever leave the church and I'm- not even. I don't even think about it as God. I think about it as like there's the church, church which is God's people. When I thought about the church, I didn't think about that. I thought about it as my denomination and I never, ever would consider that in my life, I would ever leave it. Why? Well, because I have a beautiful family. That this is like, this is our main. Our main value is that we're these kind of people. Yet until I started messing up in my life, did I realize, okay, I'm not understanding something, or why is this going on? I don't want to live like this, but I'm stuck here and I'm stuck there, you like. Is that similar? You never was a consideration that you would ever leave the church, yet you weren't owning some of these things just as your own, correct?
Speaker 2:I think just more in, internally, maybe, like I owned it externally right, but internally, inside, I would have moments of questioning or doubts or, like you know, wondering if this was true. But I think I just pushed them aside and it was like, oh, you know. So, externally for sure, you know, especially after I graduated college and got my first job, you know, you kind of have to as a teacher at an Adventist school, you have to kind of and it's not that I didn't believe it either, it was just, yeah, you kind of just have to. And so, yeah, that I think that continued on for a long time. You know, and I don't remember when this happened, but I do remember at one point having experience. I don't remember if it was had to do with like in a week of prayer or like a special time where, or maybe in just in my own devotions at one point, just praying okay, god, I really, I really, really, really want to know you and be a higher percent, all in like whatever that means, you know. So, whatever it takes, whatever it takes, you know, and I don't think I knew what I was praying, you know, but I prayed that and I remember being like whatever it takes, just you know, and he did. Obviously, again, I don't know, I don't remember all the details, but I just remember, so tell me the story.
Speaker 1:So you get out of college and you go from being the kid who doesn't have to have the answers to now you're a teacher and now you have the answers, even about spiritual things, because you're a spiritual person. What happened in your life? Tell us? Yeah, just keep going.
Speaker 2:No. So I would say I was teaching for a while in Virginia. I was long distance with my boyfriend at the time and we'd be going back and forth. We ended up getting married and then moving what it just not even like. Four or five months after we got married we moved to Colorado. So, teaching here in Colorado, I was doing the same thing I was doing out there in Colorado teaching music, loving it, loving the kids, loving the experience, loving living in Colorado it's like amazing. We were into so much of like outdoor stuff, like hiking for teenagers, and we were running every day and we were, you know, going out with our friends all the time doing all these things, going camping. You know, we love kind of the outdoor kind of lifestyle, right, so doing all those things, doing a lot of stuff at the school, of course, you know, as a I don't, yeah, you worked at a boarding academy but it's just like all in right. Yeah. Just 100%. All the time it's quite busy and so we were doing that. We let's see it was. I think it was four years after, four years after we got married we decided let's try to get pregnant and have a baby, right. So didn't take long, got pregnant pretty quickly the first time and, yeah, like super excited, I yeah. So there's a lot of details to this, right, I'm trying to decide how much to share, but so basically, let's see, we went in during the pregnancy 20 week ultrasound, right. So you see all the things for the baby and all those things and they check everything and make sure everything looks good. So basically, what we found out at 20 weeks at the ultrasound is that we found out that there was a part of the brain in our daughter. We found out she was a girl, we found that out later, but there was a part of her brain that was missing. So the part that connects the two halves of your brain. It's called the corpus callosum. Apparently, they're supposed to see it on the ultrasound and it wasn't there. They said well, we don't really know what this means. It could mean many, many things. Things could be just fine, but we wanted to let you know this was happening. So they referred us to I forget the term for like a perinatologist, I think is what they call it where they do more complex, that they dive into things and look closer at things and follow you closer throughout the pregnancy. So that's what we did. They follow me closely throughout the pregnancy. Then at that point I think, like I said, we didn't know what was going to happen. We didn't know what, but there could be complications, is what they said. So we did, I remember we did an anointing. They did an anointing with the elders at our church.
Speaker 1:This is all in the 20, like right at the 20 week, like they're doing ultrasound and they're explaining this, or did the ultrasound tech leave and like the doc comes in and is like, ooh, like I got a tonsils from start.
Speaker 2:So no, what happened was we went and had the ultrasound done and they called me, so we were going to do like a whole gender reveal thing right, that's kind of a new thing to do, right, I don't think it's fun. So we're going to do this gender reveal a thing on like a Sunday write a bunch of people, we had planned this party and all these things. So I was out shopping on Friday afternoon getting stuff for the party and all these things, and I get a call from the office that did the ultrasound and they left a message because I didn't. I'm one of those people that if I don't always recognize the phone number, I don't always answer the call and so. I didn't answer.
Speaker 1:I was busy, you know.
Speaker 2:I was running around doing things. So I was like they can leave a message, right. So I didn't recognize that they left a message and they said on there, that's when they said you're, there's something wrong with your ultrasound, you need to see a parent, a telegist, that's all. And they said call us. And this was Friday and I tried calling back, nobody would answer. Like it was the end of the work week, you know, like. And so the whole weekend, through our party on Sunday, I was like what is wrong? Something's wrong, like what is going to happen, you know, and and they anyway. So that's, I jumped the gun, I guess. So then on Monday we called, and that's when they told us there was something wrong and we had to go in and they said, yeah, we're missing, we're not seeing this part of the rain, we're not sure what it was mean, and all those things.
Speaker 1:So then we did what hit you right away when you're, when you're thinking about that like this your first child. How did that hit you?
Speaker 2:I mean like a ton of bricks. You know like, like, oh my goodness, like something might be wrong. You know, I don't know, I just remember. You know you're praying about it. You know saying, ok, god, we know you can heal this baby. If there is a problem, maybe there's nothing wrong, so we're just going to trust we'll be OK, you know, and so I don't know, just like this kind of a helpless one. Bam, yeah, for sure. Like you can't do anything about it. You can't, yeah, you're just kind of letting things play out. You know to see, and you know like, at one point we went into one of the ultrasounds and and they were saying these things and they were like, do you want to keep this pregnancy? And and we were like, yes, like we don't believe it, that we shouldn't, you know, and there's no reason to say that God can't change things in this time. But they did ask us if we wanted to abort.
Speaker 1:I just kind of stopped at that. I didn't mean to, I didn't mean to do that. No, no OK. No, but like, just like, yeah, like there's no way, right, right, it's your child.
Speaker 2:Yeah, so, so, yeah, we, like I said we did it, they did it anointing for us. Just a small little group of elders and people that you know from our church, that one lady in particular that I knew who just was a super prayer warrior, anyway, just a bunch of people that came and did anointing. They actually poured oil on my very pregnant belly and, you know, prayed over the situation and, and yeah, I don't remember when that was in the pregnancy, but it was towards the end, I think. Anyway, so then, october 10. 20. Let's see 2016. Our daughter was born Jeannesse Amelie, very French name, but yeah, that's a whole other thing. But, but anyways, she was born. I tried to labor naturally and she was born C-section and because of the complications they had seen on the ultrasound, they were like she will probably. They took her away pretty quickly. She initially, her scores, like her apgar scores and all those things that they they tested at the beginning, were great, like she was looking good and all those things. So. But they took her to the the NICU just to like, monitor because of this part of the rain that they thought she was missing. They wanted to make sure she could do all the things you know, eat, eat all their normal baby things, right? So they took her to the NICU. I obviously was in recovery for a while because I had a C-section anyway, and then the first couple of days okay, I remember this so like soon as she came out, like they brought her to me. You know I'm laying on the table C-section, like. Anyway, they brought her to me and I remember looking at her and I was like her one eye was closed, kind of like her other eye was kind of open, but her one eye looks like it didn't open. And I was like, well, I remember like I think there's even a video of my husband videoed something and I heard myself like say that Her one eye is closed but otherwise she looked good, she looked healthy, like everything you know anyway. So she was doing great in the NICU for the first few weeks or whatever, or first, sorry, first few days, and they did decide to do like some MRIs and things to check out her brain and they did notice there were some abnormalities in her brain and she was missing that part of her brain that I talked about, that Corpuscloisin, and then also the kind of the main thing we noticed, like visually or whatever was her eye. So, like I mentioned, when she just came out her eye was closed. But I thought I think at the time I had thought, like because she was, you know, smashed in there like, and I was trying to push her out for a while, like she probably had like this, it was kind of bruised or whatever. Anyway, but as, even as she was a couple of days old, her eye still wasn't opening much, and so they brought in an ophthalmologist, or I forget the term for it or whatever, but they brought like an eye doctor in to the NICU or they had some on there, I don't know but, and they said they like did an exam. And yeah, they were like she will most likely not have vision in that eye. And that was the first like, oh my goodness, you know, like the first moment, and there are many more to come but like that was the first moment. We were like oh my goodness, she's not going to be able to, she's going to be blind in that one night. And they say we think she can probably see out of the other one will probably be fine, but that one night is probably not. And I remember, you know, sitting in the NICU, I think my parents came, they drove over or they flew over quickly after she was born and they were there and I just remember crying in the NICU, with my parents there and my husband and you're just you know, saying it's going to be okay, even if she can't see out of that eye, it's going to be okay, you know, but they anyway. So there was that and and and we ended up they sent us home. She had these affirmations in her brain too. So they told us to watch her closely for seizures, specifically because of all what all that was happening with her brain and how complicated things were and how kind of messed up in her brain Things were. It wasn't the usual thing, so. So we were watching her closely and about actually remember it was specifically on the day she turned one month old she started having seizures, and just really mild, like probably you couldn't even tell if you weren't watching for it, you know, but just kind of these little torques and little movements repetitively and we were like we think she's, we took videos, we you know, we think she's having seizures. We went into the hospital, they had her, they had us bring her in and and they started her on a seizure medication. Like yeah, just a month old, and, and so we started oh, when, what? I think I might be getting my story a little messed up. Anyway, it was around that time she started having seizures. We went in and they tried yeah, okay.
Speaker 1:Now remember they tried to get her. I'm very ignorant on this stuff. Do they hurt her? Is it just like this is something's going on in her body?
Speaker 2:Yeah, so I think she was so little at that point that I don't think she knew what was going on. She didn't cry, she did it. You know, when you think about seizures I think you think like this thrashing and foaming at the mouth and all these things. And for her specifically and I'll talk a little about her diagnosis a little more but like for her specifically, they were fairly mild and just like little. They call them spasms so, and they were clusters, so like she would do this like twitch and then she'd stop, and then she'd do another twitch and then she stopped and she'd do that for quite a while, like she could go up to 20 minutes or 30 minutes of just that. But, her brain wasn't resting, it wasn't learning, it was just, you know, constantly having this electricity going, you know, like she couldn't process and learn. But she didn't cry, she didn't, you know, she, and she's never. Yeah, that's part of that's part of the mess. She doesn't really cry much, she doesn't. Anyway, we'll get into more of that. But yeah, so we ended up we were at the children's, or sorry, we were at just a regular hospital at the Northern Colorado and they discharged us after like a little bit of time and then we went down to Children's Hospital in Denver, because they're a lot more specialized, right. So we went and we were admitted to the neurology floor of Children's Hospital and they did a lot more testing, a lot more scans and things on her brain and she was still having seizures, right. So like every day, basically, and every few hours was I'm trying to remember way back to the very beginning, how often, but like, from what I can remember, it was just like every few hours you would have these clusters of seizures, and so you know, it's basically like kind of so many a day, like a ton, you know, every few hours. So, anyway, we went in, they did all these tests and they came back to us and they said we believe that your daughter has something called a cardi syndrome, and a cardi syndrome there's three things that determine. So a cardi syndrome. Yeah, there's three things that determine whether you have a cardi syndrome or not. And the first one is the eye issue that she had, which is called, if I remember right, coloboma I'm trying to remember the name of it. Anyway, basically, it's like holes in your retina, and her eye itself was smaller, so like not only is it opened, but like much smaller than the other eye, and it was like the pupil is really small, it's just a little different color, like kind of just different, and so the eye issue is one part of it. The second thing was the seizures, the type of seizures, the infantile spasms that she was having, and the third thing was absence of the corpus callus. So all those three things proved that she had a cardi syndrome, and they talked about I didn't know what it was right, like I'd never heard of it before. I think one of my friends, when she was having seizures, but we hadn't been to the hospital yet, one of my friends had done some research and she was like, have you heard of this? And I didn't want to go too much into what the possibilities could be, because if you Google everything you know, then that's a problem.
Speaker 1:Yeah, you go to WebMD and they're like, oh, we're all dying.
Speaker 2:Yeah, I'm okay with that for sure. So, anyway, they said that and I think the one thing I remember they talked a lot about okay, they said she's a mental at this point. Like they said okay, so with a cardi syndrome, there's all these things that you know, all this information, Like I don't remember all the things they told me, but what I do remember them saying is she probably won't walk, she probably won't talk, and they said 50% of girls who have a cardi syndrome it's the only girls that have a cardi syndrome, strangely enough, but 50% of girls who have a cardi syndrome typically don't live past age 18. My daughter was one month old, you know, and I'm hearing this and, of course, I'm just like crying, holding my newborn in the hospital room, just crying, you know, like this is the life of my daughter, this is what it's going to be, and just being angry, super angry at God, at the doctor. Wasn't his fault, you know, just super angry.
Speaker 1:Did you know you were angry at God? Or were you just angry and like did you know you're like? You felt like you held him responsible.
Speaker 4:Um.
Speaker 2:I don't think I held him responsible so much as just like why, why you could have fixed this, yeah Right, not that he did it so much. And you know there's all the processing that we've gone through. You know that I'll maybe talk a little more about, but just you know the processing of like did God do this on purpose, or whatever. You know, like like you know why did this happen to me? And we know that it's not a genetic thing, it's a random mutation that happens in pregnancy and it's super rare. And again, I don't, I don't, I don't know all the numbers. It's like what a thousand people they know of in the world, or something that had the Kari syndrome.
Speaker 1:Did the enemy come in, come for lies about you, even if you didn't, if you before you knew it wasn't genetic, did the enemy come and say try to position you.
Speaker 2:Yeah, of course, I mean not it wasn't like that was my existence or whatever, but, like you know, there were moments I thought, maybe, maybe I did this, maybe because I think I remember, you know, going to a hot tub when I was pregnant, you know, like once, and maybe that's why you know, but it's just a. Yeah, there wasn't a ton of of the lies, I don't think, but there was moments I'm sure you know that that that there were lives thrown at me. Yeah, maybe I, maybe I, maybe I just lived. I lived in a, in a way that God didn't approve of. So then maybe he decided to do this so that I would wake up. I don't know. You know there's moments of things like that, for sure.
Speaker 1:So, so early on, there's probably a ton of grieving, right, even though the child is there. But there's like bargaining and grieving. And how did you? How long was it until you got comfort, or what? What comforted you after thinking about this?
Speaker 2:Um, I think it was just. You're kind of in a daze at first, you know, like can't believe this is happening type thing, or like you just don't even want to think about it in a way. But you have to think about it, right, your child is there, your child is seething, having seizures every day, like it is in front of your face the whole time. You know. But as far as, like, you know, of course, prayer, I was praying God, help her, you know, help me. You know I don't know I'm trying to even remember what I was praying. Um, you know we had a great. My husband is amazing, super supportive, you know, was there 100% of the time, all the time. You know we're grieving this together, you know for sure, and he processes it different than me. But you know we had a great support system from our church. Um, you know she was kind of in and out of hospital there for a while at the beginning and people kind of knew that there was something going on, but we didn't always say what it was. But super supportive, church, family bringing food and, you know, praying and visiting, I don't know it was just. We had a lot of support. So I think, comfort wise. I don't feel like I ever went to God and like poured everything out and was like take this from me or, you know, help me. I feel like I was kind of maybe holding back a little bit in that regard, just because I wasn't sure how to feel, like why was this happening? Was kind of my go to. I think you know why did? Why does this have to happen to us? You know, and I think at that point we didn't really know all the things. You know, they couldn't really tell us how she, even though the doctor said she, this is probably how it would progress with a cardi syndrome. There's a spectrum, right. So, like there's girls who are fully well, I would say more fully functioning. They walk, they talk, with some words. You know they still may have seizures and they have them controlled fairly well with medication. But the thing about a cardi syndrome is typically it's the it's called intractable epilepsy. So even if you treat with medication, they still have seizures. Like it doesn't completely take the seizures away, right, there's some girls who might do pretty well and not have them very often. And then there's the other side of the spectrum which is pretty intense, right as far as medical needs and seizures and inability to communicate and walk and, you know, engage and do much of anything for themselves. So when you ask the question about comfort, I'm just still like I think I checked out a lot when I could. You know, as a new mom you're pretty busy, but like scrolling on my phone when I'm feeding or dealing with postpartum, blues.
Speaker 1:Yeah, right.
Speaker 2:Because I mean adjusting to a baby, you know, as in the first time, in general is an adjustment.
Speaker 1:Wow.
Speaker 2:Yeah. So then to add these things on top of it was pretty overwhelming and I think, just yeah, it was hard to process what was happening really. So as you got older, I think you know she continued to have seizures. We continued to try to monitor and change medications and do all these things to try to help her. But you know, you start to compare and you see other kiddos and what they're doing and you know I'm still teaching at this point, part time, but I bring her with me to school, with me to class, and I would teach and she would come with me. But like we go to church and I'd see kids that were her similar age and, oh, like she should be doing that and she wasn't. We were doing therapies. We had early intervention services right away. Colorado is really great for supporting families, especially coming out of the NICU anyway. So we, yeah, we had a lot of therapies for her weekly, but she just continued to have seizures and we were continually trying to find something to treat them, help her. You know, not have them, because her brain again, like her brain, is not able to learn when it's season, so much. And I remember she'd some at some point. She'd have 20 a day, 20 clusters a day, which is like sometimes anywhere from like 10 to 20 minutes long, and she's doing that 20 times a day and she would like wake up and you know so a lot of times. What happens, at least in her case, is like she wakes up, she has a seizure because her brain is transitioning from wake, from sleeping, to waking and so she has a seizure because it's like her brain can't handle that transition. So then she has a seizure for a while and then she's tired because she's had a seizure for 20 minutes or whatever, and then she goes to sleep and then the whole. It's like a whole cycle, like she keeps waking up and falling asleep and waking up and falling asleep. And we try different things. We try steroid treatments, we tried, you know, we tried. So at one point we tried she was four months old we tried the ketogenic diet. We were going in to try the ketogenic diet at Children's Hospital, which is like it puts your brain so, puts your body into ketosis if you eat a certain way. And again, I don't remember all the details about it because they just said do this and this and this, but like something about the like how you process sugars and carbs and all those things. And so she was breastfeeding at the time and we were four months old. We went in and we were supposed to do this diet to try to help procedures and they, she was starting to sound a little like when she nursed and we were feeding her a bottle with some coconut oil in it to try to get her into ketosis, right. So we were doing that process and they came in and they said we think she's aspirating and so we need to do a swallow study to see if she's aspirating whatever she's eating, right. So they do a swallow study on her, four months old, and they like, stick her in this chair and like, give her a bottle, which she's used to nursing for the most part, right. So give her this bottle and they say, yeah, she's aspirating, so we need to put a G tube in. She can't eat my mouth anymore. She has to have this G tube and and that's how she needs to eat and we can't nurse anymore. And you know that was like one of the things she did well, was nurse, and so for me that was a hard adjustment to be like, oh, I can't do this thing. That's kind of a bonding experience with your baby, right, and you can't do this anymore, you have to, you have to not nurse her and you have to feed her through a G tube. So she had that surgery, had that put in, and we ended up I was pretty like I was like I didn't believe them. I was like I think she, I think she'll do okay. So I kind of gradually, they said you can do a little bit of nursing, but not nearly as much as she was doing, not fully, not to feed her fully and all this stuff. She was growing fine, she was doing all the things as far as like growth, no problems. And so anyway, we kind of we went back to eventually be able to to nurse again and we use the G tube for meds and things like that. But so we did that. She'd nurse for 18 months, which is a wonderful experience and I'm so grateful that I was able to do that with her. And then at 18 months she had another I think it was around 18 months. She had another swallow study and they said she's, she's still aspirating, and so we ended up she did purees for a little while, like we did, like I blended up food and stuff for her and she ate that way for a while, but then it was just from then on. It was just she mostly was fed through her G tube. When I remember at one point she was on like a bunch of medications and I think she was maybe around two years old and I was, I just remember sitting there like one time when I was getting her meds together, because all these syringes and things that you have to clean and you know I was washing syringes, I think and I remember stopping and just being like what is my life? Like I knew I wanted to stay home more once I had kids. Like I knew I wanted to kind of get out of teaching a little bit and maybe stay home. My mom did that with us and her kids and I'm glad she did, and I wanted to kind of have that. And the cool thing about where I was teaching at the time is they were like you can, you can teach part time and bring the kids with you if you want, and so I was planning on doing that, right. So teach part time I'm still be able to be home most of the time Right. So I had planned on that. But like I just remember really what is my life like? I never knew that I would know all these things that I need to know about taking care of my daughter. So, yeah, I think at this point it was like you know, this is the new reality, you know, this is the new distance that we have, this is the new normal, and so you find moments of joy and I think I'm still, when it comes to like God and everything, I'm still in this kind of up and down mode of like, you know, and as a busy mom and new mom and all these things, it's harder to find that new balance of, the balance of and all those things too. So, but I just was feeling similarly, I think, as before, but even now this was any more pressure, I would say, and more questioning from my side of like why did this happen and why won't God heal her? Because we've prayed that? I remember one experience where the church, a lot of good friends of ours and a couple pastors came to our home and prayed over her and she was, you know, maybe between one and two, I don't remember, but somewhere around there and she, they came and prayed and saying they left, singing it as well, with my soul, like they left and we just were left there praying, singing this song and praying over her, and so there's moments of like, of peace. I would say that God gave us you know of like this will be okay, right, but it was still up and down. I would say, and you know, when she's, when your daughter's having so many seizures every day, it's hard to see her do that, it's hard to see her go through that. And as she got older, things changed as far as seizures would go. You know we've adjusted men so they're not as frequent but like, as far as severity, they've gotten more intense and she will sometimes. She doesn't, like I said before, she doesn't cry much. She doesn't have a lot of recognition in general communication, like even like we kind of have to guess what she's saying. Can she tell your?
Speaker 1:voice like she knows it's you and she knows it's your husband and all that. Or does it seem like?
Speaker 2:I mean, we can guess that she does. You know, she might respond a little bit to us, but it's really hard. She can't tell us anything. It's hard. There's no recognition, Like that was a hard thing for me at first, I think, to grasp, Because, you know, even if I would come up to her and say hi, Janice, or, you know, talk to her or cuddle her or whatever, she never would look at me and smile, she wouldn't respond. She has never done that, I would say. And so you know all these things that you think about when you're having a new baby and you're dreaming about what they'll be like, and you know it's just like, just grieving, all the things that should be, yeah, like something got taken from you, even though you didn't have it Right.
Speaker 1:It feels like the future was taken.
Speaker 2:Yeah, yeah. So I would say, like you know, after that, starting in like I don't remember how old she was, two or three years old she started getting sick and needing more support than we had at home for her. So, like she'd start getting sick with like a cold or something and we'd have to go to the hospital with her and she'd be in for a few days and they'd give her some extra oxygen and we started getting more supplies at home to deal with it. You know suction machines and oxygen concentrators and you know cannulas and all these things that she needs to have support, right. So she started once in a while maybe once a year or so getting sick and you know we'd pick her in and she'd need help and then we'd come home and we'd deal with this. So 2019, 2019. So I just had my second daughter, sophie, and you know adjusting to two and it was healing in a way to have a normal, normal experience, you know, with a pregnancy and all that and with a new baby and all those things. But anyway, I 2019,. I remember we're, I was giving Janessa a bath one night and she had kind of had a rough day of like a lot of seizures, and I remember I was in the bath with her. She needed support, of course, in the bath, so she wasn't set up. She wasn't, you know, have that capability or whatever. So I was having her chair and she started having a seizure really hard, like just throwing her legs and her arms in the water and like water is flat, splashing everywhere, right, and I'm trying to like hold her up so that she doesn't drown, you know, in the water and I'm just holding her and something just broke in me and I was just like yelling and like crying, obviously, but yelling like I hate you, not her, not my daughter, I hate you. I was yelling at God, I hate you. Why? Then it was just like this bill that throughout the day, and I think it just came to like this head, and I think at that point it wasn't probably spending as much time with him, I wasn't didn't really have that conviction of who he was in my heart, I didn't know. I just was doubting who he was. Did he even exist? Like what I was just had all these. You know, when you're, when you're presented with like this whole other scenario of life than you expected and your daughter's suffering every day, you, you really question all the things. And I was questioning and I was yelling I hate you and I remember I was. It was like a prayer emphasis week at church and one of my friends and I were supposed to be praying together that night and I texted her and I said Janess just had a bad seizure, I don't feel like praying, we and I told her I didn't want to and you know I don't think I at that point, even though that had happened, I don't think I ever really just even was like I'm done with you, god, and I never said that, I know, but I was mad, you know, I was frustrated, I was angry at him why she has to deal with this every day of her life and suffer. I think that was the hardest part for me because you know you learn to live with the new normal and you learn to adjust and you learn to find joy and she's she beautiful and joyful in a lot of ways and I haven't said that probably enough, but you know just in who she is and and she's my daughter, you know she's beautiful and we find lots of joy in in Janess and but you know you just question all the things. So I remember that happening.
Speaker 1:I don't think it's. First of all, I think God handled that just fine. You know he loves you, he sees everything and in another way it is not bad and it's not wrong to see that something is not what it should be and instead of we can look forward. It's not wrong to look forward and say, while this isn't what it should be right now, it will be and this will all be. I don't know what the word exonerated came into my mind. I don't even know if that makes sense. Yeah, no but it will be and, while I love my daughter right now, this isn't, this doesn't have the final say and it will not have the final say.
Speaker 2:Right and I think you know I always had that belief, even though I felt like I never, I didn't necessarily have this complete utter like God and I have this super connection and you know, I had that understanding in my mind.
Speaker 1:I always believed that that was true and that Janess will be restored someday, and if Janess is restored, that means that there was something that was lost. You know what I'm saying. Like for somebody to fall, they have to start at the top and then they fall from that top. For something to be redeemed. Redeemed is like you go in, you win it back, but it was there in the first place, and so Janess from the foundation of the world was set aside to be holy and blameless before her father in heaven, and Jesus's death, burial and resurrection on the cross includes her. Yeah, and so Janess's story doesn't start off even in the womb. As you know, this thing didn't happen right in the womb. It starts before that, in the mind of her father, where he had never created her to be apart from her. And one day, soon, the glorification of her body will match who she's always been from, for the foundation of the world.
Speaker 2:I like that yeah.
Speaker 1:So, it's a new her. But the new her is just a restoration the word you use, you used of who she's always been in the mind of her father and that will manifest right.
Speaker 2:And it's always fun for us to like imagine what she would be like in her. Yeah you know, she was doing all the things that she should be doing. It's fun to think about that and you know how she would interact with her siblings and you know what her personality would be like and she's very, I mean, as it is, like she's a very laid-back, you know, but I think it's kind of just the way that she is because of her brain, but she's just, you know, she's not difficult to care for at all. You know she's very complex medically but not difficult to care for.
Speaker 1:So yeah, I think you're gonna and I don't want to jump ahead to, but I just think you're gonna recognize her so easily and so quickly that, like, oh, I've always known this was who you are. You know for sure. Like you know, I mean you are. When I couldn't you couldn't even speak I knew this is who you were yeah, and you get to know the little nuances.
Speaker 2:You know we, we have therapists all the time that come in and we have nursing night nursing a couple nights a week and you know they come in and ask questions because they don't know her specifically and with when someone is nonverbal like that and non communicative in any way, it's you have to know all the super details. You start to recognize all the super little details about her and what you know if she's getting sick, what you look for, and you know all those things that you start to you. You get really good at those things you know because you that's you have to you know in order to understand. And it's still hard and still challenging, but you have to do that. So so, yeah, 2019, that happened. Then obviously, 2020, worldwide. Pam things and so you know Jeannette's had had issues respiratory wise up and on before that, and so with COVID you know we were super careful, like we, everybody was like obviously frozen in like a supermarket buying all the toilet paper.
Speaker 1:Before anybody else like I, gotta be there no, that was on the record that for not being at the supermarket buying all the toilet paper.
Speaker 2:I do remember, I do remember going to the grocery store and being like shoot, I can't lick my finger to like open the the little bags for the pages. You know, like so. But we were ultra careful, even more than some people, because of her respiratory status. You know, if she got COVID, we don't know if she would survive it, and so we were like super careful about things and then go to church for a long time and anyways. So COVID happened. But in that time I think a blessing of this, because you know we, we were, I was still teaching at that time part-time, and and so here we are online. You know, doing music online. Tell me about how that is like the worst thing ever known to man, but music classes like Timmy, you're, you're, you're.
Speaker 1:Your kazoo is flat.
Speaker 2:You need to it's like the worst anyway. So I remember doing, you know, just kind of a joke of stuff sometimes for my class and like trying to just piece things together and make it happen, and you know the kids were like, oh my goodness, I have to do this, whatever. So that's COVID, but but we were home more right, and I was finding more time to be able to sit and in my quiet time in my secret place, if you were gonna call it that, right, so I was finding more time at that point. I didn't call it that because they didn't really have that understanding, but, you know, just spending time in the morning devotions, right, because I had more time for that and and also at that time I was. So one of my good friends is Lauren, you know, obviously Lauren, and so she I think she's the one I got connected with Bible study through love reality. Oh, before that, though. So my first experience with with love reality would have be with Jonathan coming to our church in 20 I think it was 2019, either spring or the fall he came in a whole presentation 18 wasn't. Yeah, probably fall, fall 2018, something like that this when he was trying ties find it on YouTube. I remember he did for like a Sabbath presentation.
Speaker 1:I remember I'm wearing yeah, but the first time the Campion LRT is the first one I ever watched and I remember having to go over again and again cuz I'm like what is he saying?
Speaker 2:well here. So like I honestly I remember sitting in some of the means me like oh cool, but it didn't really land with me really at all, like I was just kind of like oh okay, so, yeah, so that happened. You know, I was, I kind of heard about it from that right so, but it didn't wasn't like this major all transformative experience or whatever. So then, yeah, so then 2020, and then I started doing his Bible study with Lauren and her sister, alyssa, and and all of a sudden, I was like what? I never thought about it like this before. I never thought of like that, I think. So what I remember was Alyssa talking about is it Romans 8, 1? There is no condemnation for those in Jesus Christ? Right, that was her kind of big moment and I remember her talking about that and being like I mean, I've read these things so many times, bible classes and on my own, you know but it never like sunk in that this was like it sounds bad, but that this was true. Why does that sound bad? But it that's. I felt like like they was reality, what like? Isn't it, isn't it supposed to be like? Oh, you know, isn't it supposed to be like? Like I feel, I feel terrible because, okay, jesus, please forgive me for what I did, and okay, now I'm gonna try really hard to like, do better. And that was just that cycle, right, sure, and that's that's what you have to do as a Christian, right, sure, that's what it is right, right, so that's what I was, that's that's what this was so different, this new idea of like you don't have to be in that cycle anymore. The Bible says and Romans 8 you know all of these things and I was. I just I couldn't believe like this was true and it at the same time, I was reading another book called Adore by Sarah Hagerty and it's basically like you take, each chapter is kind of a character of God, a part of well, let's see if I can say right. So it's like exploring a part of who God is like you know, in different scripture. It gets you into the Bible really good and you know. So it wasn't just I was reading a book, but I was also diving into, like what the Bible said about who God was. And I remember all of a sudden, like understanding and like having this feeling of like the goodness of God, like he is good, because I think I was always kind of up and down about who he was. I remember, you know, after my daughter was born, we did a concert, my siblings and I, my real sister and I, we did a concert, we sing together and we were performing a concert and I did a song that was basically says even though this is this like dark experiences happening in my life, I will still sing. I will still, even when the shadows fall, I will sing, even when the night is long, I will sing. And I remember like singing this song but also talking about my experience with Jehness and saying something like well, if this isn't true, then what else is wrong, kind of thing like that was my really mean.
Speaker 1:If, what, if? What isn't true?
Speaker 2:like, like, like, like. If God isn't going to restore this, if God isn't going to fix Jehness, or if I don't have this to look forward to, then what else is there? With my experience with her, you know, and that was my, that was my like, go to point, and now I think about him like that.
Speaker 1:That doesn't necessarily mean anything for a sir, because so this is when you were, when you were angry at him, is, if this thing is happening and you say that you're good, then what is this? What does good even mean? Is that kind of the sentiment that you were frustrated?
Speaker 2:I think I was. I was trying to trying to bring it around, like I was trying to bring my experience to, like still believing who God was. At that point, like you know, I'd had this probably I hate you God kind of experience, and that maybe even happened after that, this concert time either. But in some way or another I was just trying to kind of resolve it in my mind and in my body, like or to prove that God is good. In that I was still trying like I couldn't. I couldn't make it, but I was trying right. And so what I said was like if, if, if this isn't true, then what else is there? So we might as well believe it, kind of thing, right? mm-hmm does that make sense at all? I don't know.
Speaker 1:I'm trying to like was it a negative thing about God, or was this a good thing about God? That, that's what I guess I'm trying to figure out.
Speaker 2:Yeah, so I think in my mind I'm trying to rationalize and and say God is still good. And I said that God is still good, but I don't think I fully believed it right at that point I said even though these things are happening, god is still good. And what else is there to believe except for? You know, except for that, but I don't think I believed it. Does that make sense, sure? Well, be still not making this.
Speaker 1:No, I think I'm catching what you're saying. The basis of God being good back then seems to have been these circumstances, and while you wanted to believe that he was good, the circumstances are showing that he has not shown up. Yeah, and you were leaning heavily on those circumstances. Yeah, just because that is what was natural, the natural way for you to think back then, because that's while nobody taught it to you, mm-hmm yeah, my circumstances is that mm-hmm, my circumstances really determined my happiness where I was with God, you know, yeah, for sure.
Speaker 2:But I don't feel like, when I said, when I talked about that and I said that in that, in that moment, in that concert, like I didn't feel like it was like yes, god is so good, like I just felt like an excuse or whatever, like yeah right fair enough, right so? yeah so, but anyways, that was going backwards a little bit, but then, yeah so, 2020 I started. I started realizing combination of me just delving into what the Bible says about who God is, and and you know what was the main ideas should pointing out that, like what was you're talking about, there is therefore no condemnation for those who were in Christ Jesus.
Speaker 1:That one was sticking out to you because of a list of testimony. What else was coming at you like? Oh, I'm not sure.
Speaker 2:I've thought about it this way so I was reading it in like a ESV or something and I was like, okay, great, but I just still have a trouble trying to gas grasping it right, this concept. But then I actually went to the message Bible, which I don't I sometimes feel like is the no-no sometimes, for something about it.
Speaker 1:Whatever helps you to see it, you know right.
Speaker 2:So I was reading this and like where was it the one that stuck out to me the most? So when Christ died, he took that entire rule-dominated way of life down with him and left it in the tomb, leaving you to free a man, to marry in quotes a resurrection life and bury quote offspring of faith for God and I, that's Roman 7 yes, that's Roman 7, yeah, sorry, so that's from. It said, good, yeah, you right, and that's awesome. And then, but then so it goes through all these things like sin and the law and all these things, and then it says at the end the answer, thank God, is that Jesus Christ can and does. He acted to set these things right in this life of contradictions where I want to serve God with all my heart and mind but I'm pulled in the influence of sin to do something totally different. And then Romans 8, what they am those who can do it on their own and that, obsessed with measuring their own muscle moral muscle it never get around exercising it in real life. Those who trust God's action find that God's spirit is in them, living and breathing. God, and I never. I thought the Holy Spirit was like this woman kind of thing. I think like he can live in me and he's living and breathing and I can have. So that was one, but then also that was a major one, right. But then what is the other one that says the same power, that lives, that raised Jesus from the dead, lives in you. Where is that? Romans? Oh shoot, that's not in Romans but, you're, you're okay.
Speaker 1:I'm getting confused, but you're thinking of this idea. This idea, I think it's you. You have a Bible in front of you or is just on your on your phone.
Speaker 2:I have it on my phone.
Speaker 1:Yeah, yeah, I don't go to my note to first Corinthians, chapter 2, because this idea that you're talking about in Romans 7 is that we used to be our old selves, but our old selves died so we could be married to another and that would produce actual fruit in our life. And so we were, under the law, sold under sin. We had to die why? So we could be united with Christ and in our unity with Christ we actually then produce fruit. We're no longer living by a written code.
Speaker 2:We're living by an actual God living in us through the Holy Spirit yes, and that was, that was Roman 7, because I just read that, but this other yeah.
Speaker 1:So I'm kind of jumping around, sorry, but this idea I love what you're talking about. Go to first Corinthians 2 and yeah, I'm there there's oh, what does it matter?
Speaker 2:what translation?
Speaker 1:I'll go to the just ESV just for okay. There's this section where I love it so much and it's where Paul is explaining what we have and so many people don't get this because they stop reading it or they just cherry pick it. But why don't you if you could read out loud? I think this is fun. Go from 8 to 13,. Don't read 13,. Go read through 12. This is awesome.
Speaker 2:Okay, none of the rulers of this age understood this, for if they had, they would have not crucified the Lord of Glory. But, as it is written, what no eye has seen, nor ear heard, nor the heart of man imagined, what God has prepared for those who love him, these things God has revealed to us through the Spirit. For the Spirit searches everything, even the end of God. For who knows a person's thought except the Spirit of that person which is in him? So also, no one comprehends the thoughts of God except the Spirit of God. Now we have received not the Spirit of the world, but the Spirit who is in, who is from God, that we might understand the things freely given to us, given us by God.
Speaker 1:So Paul says this thing, where we cherry pick this verse, what no eye has seen, nor ear heard, nor the hearts of man imagined what God has prepared for those who love him, we're like, oh, that's super sweet, oh, cool, cool, cool. But if you keep reading he says but this is what you know. Like, the mystery of God is not supposed to be a mystery to Richard and Melissa, because that has been revealed to us. What does he say? It's been revealed to us through the Spirit, for the Spirit searches everything, even the depths of God, for who knows a person's thoughts except? So the whole point of the mystery of God is that it's not supposed to be a mystery to us, because if we go back to Romans 8, the Holy Spirit is actually ministering to our Spirit, that we are sons of God and that's what we've been filled with. So we actually have. A little later on in that section, it says we have the mind of Christ. It says nobody can know the heart of God except for the Spirit, and that's the Spirit that we have. So the world is going around in this mystery, yet you and I, because we're in him, it's not a mystery to us. We have the Holy Spirit and the Holy Spirit is ministering to our Spirit. The gospel how safe, you are how secure you are, how wild this is, how hard his grace is sufficient for you.
Speaker 2:Right and I think I just never, I never had felt that, I never had understood that, I never had grasped that, no matter what I did, who I you know, my circumstances were like God was still good, god was who he says, he was Like I love that song, I am who. I say, I am Like yeah. So I think I'm not good at expressing and verbalizing all of these things, but I think, just overall, what hit me was that I am not, I am not a sinner, I am, if I accept what Jesus has done for me. I'm righteous, I'm blameless, I'm all those things, and that that was a new concept for me. That was new to me because I always was like, oh wretched man, am I? You know? Yeah, yeah, yeah. That's where I thought you had to position yourself.
Speaker 1:So the paradigm shift is all of these things could be true for us if we read our Bible, prayed every day, and we would grow, grow, grow. Now it is true, because of Christ in us, the hope of God.
Speaker 2:Yes, because of who he says he is and because what he's done. Yes, like because of him, it's true, and I think that I never. So. So I, yeah, I started reading the Bible and like, all of a sudden, it started like I don't know, just making sense, like it just started, like this is real. It was just like the words were coming out the page and like this is, and I was just excited about going and reading my Bible Because before I think, I felt like, oh, it's like a chore that I have to do. Like you know, it never felt like I wanted to do it, sometimes, sometimes maybe, but like you know, so like all of a sudden, because of now, like what these things that I'm learning? Like, and I've read these things before. But so all of a sudden, why they started, I don't know making sense to me, yeah, it was just like the goodness, that God was just filling me and I was just responding to the love that he has for me and it was beautiful.
Speaker 1:While this paradigm is shifting for you, I imagine it's still in the middle of the worldwide pandemic. How did this paradigm shift of going from it could be true to this is true and I have it now. How did that shift the way you were looking at your circumstances?
Speaker 2:I think the things that I was reading then would all of a sudden apply, of course, to like what I'm experiencing with Jeanness and all of the hardship and stress and, you know, worry and I've always been more of a worrier, you know so like all these things are still happening. But now that I have this kind of new approach and new reality to like what the Bible actually says, it's like it's giving me peace in a different way. It's giving me hope in a different way. It's just I'm feeling like, even though these things are still happening, I can abide with who God is and what he says about me and apply that to what Jeanness is suffering with every day, if that makes sense. I think specifically about so. Where it kind of really came to a point, I think and this was even more obvious to me, like the spirit really spoke to me in this moment was so in 2022, jeanness started having more hospitalizations, I think, because, you know, during the pandemic, people were so careful in wearing masks and all these things and we still wear masks with one public because of her but then people started being less and less careful and their immune systems were just terrible right From not being sick for so long. And then all of a sudden, here we are BAM, everyone's getting sick again Not necessarily with COVID and things and so yeah, and so she got sick in March 2022. And she was pretty sick. They put her on a bipap machine, which is like and she was on this full face mask where, like they shut, basically they shove air into her lungs and pull it out. So she's getting this exchange because her oxygen levels are so low. So she gets sick from like a typical virus, like a cold, where, like my daughter, my, my middle daughter is like sniffly and like coughing a little bit. And Jeanness is like in the hospital for two weeks in the PICU because her lungs are not as healthy because of all the she she aspirates. She doesn't eat by mouth anymore, but she aspirates on her saliva and she drools on you know. So there's that, and so her lungs are not great right In general. And then when she, because of her brain and all the things that she struggles with, with seizures and everything, excuse me, she doesn't cough very well, or like when she's super sick and she's kind of in this decreased state of like, I don't feel good. She doesn't want to cough and so all the junk in her lungs settles in there and she gets a pneumonia. And so she here, she is on this bipap machine and they have to like force air in and out and, like she, she was the first time sick for two weeks in the hospital with just the cold virus, not anything, not COVID, not you know, not even you know. So it turns from a virus to like a pneumonia for her. So she was there, we got home, we were home for 10 days and she came back in with another virus for another two weeks, basically. So she was like in the for the whole month of March, almost in the hospital, and then we came home and here we are like trying to be super careful, right, so we're not going to Saddle School, we're not going to church, we're like wearing masks everywhere we go, we're like not getting together with friends, we're like super, you know, because of Janessa and I'll say we still are that way because of her status but basically she had a rough year. 2022 was a rough year for her. She you're home for a few months. She went back in in June into the hospital and so they ended up putting her on a bipap at home and all of these things, like she needs more support at home. They're saying her lungs need more of this exercise with air because she doesn't run around and get get that on her own. And so, anyway, june, she goes and she is sick again, and you know what they told us? What her neurologists and others have said is that typically, with girls with a hearty syndrome, what takes their life is not even seizures but respiratory things. So they get so sick that their bodies can't recover basically, and so you know, she's been sick so much in 2022. We're meeting with all of her doctors in a special meeting talking about why she's having a hard time recovering. They're saying it might just be that her body just has a harder time recovering. She's you know all these things and I think we're meeting with the reality of, like, she's kind of declining, like this is. You know, at one point, one of the doctors told us like, typically, if girls with this diagnosis can live past 10 years old, they live a little longer, but getting to the 10 year old mark is hard. So she was five into six years old at this point, right, and we're having to do all these new things for her. She's getting a vest treatment, which is what they use for like cystic fibrosis kiddos. You know they put this vest in a shake for like 10 minutes or 20 minutes to loosen up all this stuff inside and she's doing suctioning and she's doing inhalers and she's doing all these things to try to get her, but her body is just tired. And I remember then telling me that she was close to like needing intubation at one point because she wasn't clearing her lungs, she wasn't doing what she needed to do to recover very well and I remember being coming. She eventually came home from that stay. She was hospitalized one more time that summer for a similar virus and so now here we are, repetitively being in the hospital and I remember, you know, hearing these stories and there's I'm on a really great Facebook group called Ecardi Syndrome. It's for all the parents and people who support Ecardi families. It's really awesome. But they post on there once in a while when people pass away, when girls pass away, and you know they're five, four, eight, nine, you know like they're young, and so I'm just thinking about to be blunt, like when she dies, and thinking about what that will be like, and of course, not wanting it because you never want your child to die, but thinking about me leaving her hospital. You shouldn't have to leave your daughter in the hospital because she's passed away and you won't ever see her again. You know things like that Like and being afraid and this was, this was after I kind of had this freedom and she experienced right like like kind of learning and changing my paradigm over to what Jesus has done for me. And so I'm viewing all of this now and I'm reading and I'm trying to come to terms. But I was reading a book he Will Be Enough, and in it it says talking about deliverance from evil. But it's written by a mom who has, who has special needs, kiddos too. So I can relate really well with a lot of things she says. But she's talking about the fear of death. Life is full of truly frightening things, but because of Jesus we don't have to be afraid. Why not? Because if we trace the paths of all our fears for ourselves or our children or other loved ones, their origin is the fear of death. But those who are set free from death itself are no longer slaves to fear. And I was like what? And it like it hit me. It says down here now, and because of God's generous gift of his son. One day, even the sickest bodies will be delivered from eternal death and made hold in heaven. We don't grieve as others who have no hope, first plus the Lemons 413,. And we don't fear as those who have no hope either. And I feel like, all of a sudden, I was like you know, I knew this reality of Jesus has set you free from sin, right, and that paradigm shift that I was experiencing. But all of a sudden, the spirit was just speaking to me. Like you, the Bible says you do not have to fear death, you are no longer slaves to fear and you are no longer slaves to to death, to the fear of death specifically. And I was just like, wow, like it just hit me. The same way, the Bible said that you, you don't have to fear death, you don't have to fear what might happen, what is probably going to happen.
Speaker 1:Okay, we're going to take a quick break in the episode and I'm going to bring on my sister, jaila. Jaila, how long have I known you? I've known you since we were sixth, seventh grade.
Speaker 4:How long has it been it's been a long time, I don't know, at least 30 years.
Speaker 1:Oh my gosh. Okay. So quick question how long have you been rocking with the gospel?
Speaker 4:Six years.
Speaker 1:Six years and what has the gospel done in your life?
Speaker 4:Joy, I would say endless joy that never runs out. And yeah, it's just, I'm joyful every day and it can't be taken away. Like everything, I just love life and it's just so joyful. I wake up excited for the day. I go to sleep with a song in my heart and I'm just a happy person. I'm one of the happiest people I know. It's awesome.
Speaker 1:That's so awesome. It's crazy that this has been going on for just five years. For me, like at the end of this month, kind of cool you guys have decided to give of your finances to keep this message going. Why is that important to you?
Speaker 4:Well, one of my favorite verses is Revelation 12, 11, I believe, and it says that they overcame him by the blood of the Lamb, the word of their testimony, and they did not fear their lives into death. And I just believe that testimonies are powerful and we've seen it these past years with DTL and how it has spread the gospel and how people's lives are being changed. And you know, it's one thing to share scripture, because people have different take on scripture and how they interpret it, but it's another thing to share your story and people can say, oh, that's not what scripture means. It means this, but people can't argue with the changed life. And so I just read these stories because they're real, they're powerful and it's just beautiful. It's just beautiful.
Speaker 1:Let's go, man. Thank you so much for forgiving. It has been a blessing to us. If you are home in your life, man, I want to see this thing move forward in 2024. I just sent out our donation receipts last night. So many of you have blessed us and just moving forward, we just we know that it's going to be more in 2024, more testimonies, more stories, more gospel. Go to loverealityorg slash give and partner with us. That's loverealityorg slash give, and we really believe that if we keep telling these stories, there's going to be more people wanting to hear it. So, thank you so much, jayla. Appreciate you. Appreciate you too, yeah.
Speaker 4:All right, bye, bye, bye.
Speaker 1:If you think about salvation, we think about it as like a future event. And when I say we, I think probably just in my faith tradition, your faith tradition we think of salvation as a future event. One day we will be safe, right, but that is not how the Bible talks about it, right, right, like salvation is here now. Salvation has come. And so, while you are living in salvation, like the kingdom of heaven is here now, and the same thing for Janess when Christ became our sin. It says in 2 Corinthians 5 that he became our sin, who knew no sin, so that we might become the righteous of the God of Christ. Does that mean that he became all the bad things we've ever done? Or just somehow he became that lie and he took that lie to the grave and he died to it and he rose to life? That means the thing that has caused this pain and there has been pain there for sure, and you've had to persevere for sure but Jesus actually became that and he died to it. And so, while it's kind of the already but not yet, or the we have it but we don't have it, and that is that Janess is going to live forever, she will live forever. Salvation has come for Janess, salvation has come for Melissa's come for Richard. We have it now. And while we may go to rest before his second return, we will still live forever. And if Janess lives to be 10 years old, if she lives to be 18 years old, if she lives to be 99 years old, her going to her rest at 10 and her going to her rest at 99 would be the same offense to God, because he created her to live forever, not to even 99. If she did live to be 99, we would all be a little more comfort. We wouldn't talk about it the way we would talk about it if she passed early, because no parent is supposed to outlive their child, and so there's something that's just wrong about that. But at the same time, death itself is an intruder. It's a foreigner. We are never supposed to experience it. But, like you just said, we do not mourn the way the world mourns. Jesus didn't cry for Lazarus because Lazarus had died. He cried because they didn't believe him. John 11.35,. He weeps. Why Not? Because Lazarus is dead. He's literally about to raise Lazarus from the dead. He's looking at these guys and he's like they don't believe. I am the resurrection in the life. He says that a few verses earlier. I am the resurrection in the life. That's so beautiful. And so, while when Janess passes and if you're still alive, it will be sad, but it will not be sad in the way the world has that sadness. You will miss her and all of that, but it will not be the same because of who your hope is in.
Speaker 2:And I think you know, just in general, my experience with Janess when she was getting sick so much, and every time she would get sick like usually it was my middle daughter who brought home a virus or something and every time she'd start getting sick and my anxiety levels just went through the roof Like, oh, my goodness, this is going to be what if? And that's what happens. This is like you're like what if this is the time? What if Janess gets sick and she doesn't come home, like what you know all of these things about worrying about, and I knew these verses about what Jesus says about death. You know, and I knew we don't have to grieve without hope and all of these things, but some, for some reason, this this when I read this about what the Bible says about not being slaves, you know to fear and it just made sense to me like I don't have to live in that anxiety and that fear about, about not only Janess getting sick and being in the hospital for two weeks or more, but like about her death. You know, I don't have to fear that Because I know who Jesus is, I know what he's done, I know, I know now to trust that he is good, no matter what I'm experiencing in my life, no matter what is happening with Janess, and the peace that comes from that is is just overwhelming and and way better than anything. You know it's, it's, it's just. I'm able to. I'm able to have joy in these moments of like super stress. I'm able to to just live in peace around all of these circumstances surrounding Janess's diagnosis and her future. And and I don't think I would have when I read this about being freed from, from fear, I don't think I would have grasped it. The other day I was thinking about this and and unless I had experienced this, this concept of a freedom from, from saying and from myself and you know all of these things so it was a big. It was a big moment of blessing and and yeah, just major chills.
Speaker 1:Can I read you this verse, as you've been talking about this and then I want to ask you one more question. This verse just keeps coming up in my heart as we're talking about this, and this is in 2 Corinthians, chapter 12. And everybody knows this section of scripture is where Paul is begging God to take this thorn away from him. And what is this thorn that Paul's dealing with? Well, he's getting beat for preaching the gospel. Everywhere he goes he's getting beat. Okay, he's put up a lot with a lot of stuff. He's in in prison. It's similar to the prayer that Jesus has where he's in the garden. He's like hey, Father, can you take this cup for me? Paul is praying the same thing and Jesus has a similar answer, or God has a similar answer in both. He says that my grace is sufficient for you. But the verse I wanted to highlight will start at nine. He says but he said to me my grace is sufficient for you. What does that mean? That means, Melissa, my power to live out your life is powerful enough for you to go through anything that you're ever going to go through. Like it is. My grace is sufficient for you, for my power is made perfect in weakness. Therefore, I will boast all the more gladly of my weakness, so that the power of Christ may rest upon me For the sake of Christ, then I am content with weaknesses, insults, hardships, persecutions and calamities. And this is the verse for when I am weak, then I am strong. It doesn't even say for when. Paul says for when I am weak, then God is strong. It says for when I am weak, I am strong. And I don't know if this is an encouragement to you, but I want it to be an encouragement to you. Like it hasn't been easy, like all of this stuff has been incredibly hard. Just, you know I can't imagine it, but this has made you, it has not broken you. And when you go down and you're you have to do this bath every day. You know, for as long as she lives this is what you'll be doing. And when you feel that pain and that hardship, know that this is actually making you strong, because in your weakness you are actually strong, because you know that Christ, him living in you, is powerful enough for you to live that life of complete love and devotion for this sweet, sweet human being that God has given you as a gift, and she is a gift. And so, whenever you feel that that, don't forsake, don't forsake, and it's easy for me to say, but don't forsake the trial, don't forsake the tough time. And in it to say, yeah, this in my weakness, I am strong and I am. I am a through Him who has loved me. I'm more than a conqueror, because it's already over. Janess is safe. I am safe, my husband is safe. My other kid is safe, we are safe. We have it now. While we don't see it yet, we have it now. And when I think about you seeing like there's a bunch of people, man, this is just all filling up for me, that when I'm caught up in the clouds, yeah, I'm going to want to see my grandma and I want to see my abuelito and I want to see my tia and. I want to. But I'm going to cruise over to see Mindy's Hamalaya. She's a friend of mine. I'm going to cruise over her to see her son. I just want to witness it. And then I'm going to cruise over. I want to see you and who knows when Janess could outlive us all. But if she doesn't, I want to see that. I want to see that reunion and I want to. I just, I just want to see it. I don't know if God's going to allow us to see all of that. I just want to see it, and it brings tears in my eyes right now. Just to see it, because all things will have been made beautiful in his time.
Speaker 2:Yeah, praise God. Thank God for that.
Speaker 1:If you could go back to this, this sweet mom, and put your arm around her as she's frustrated in the bath, and you could just put your arm around her and say, hey, babe, what would you tell her? Oh man.
Speaker 2:I think I would say Jesus loves Janess more than you do and he is with you here, holding your arms, holding her up. He's with you, he will. He will love you, support you, no matter what. Even if you feel this way, even if you feel mad, it's okay and he is good.
Speaker 1:Praise the Lord for that testimony.
Speaker 2:Thank you, praise God, thank you.
Speaker 1:Man, as I think about this story, this testimony. Sometimes we just have to be encouraged with truth, and I think of this verse that says we don't want you to be uninformed brothers about those who are asleep, that you may not grieve as others do who have no hope, for since we believe that Jesus died and rose again. Even so, through Jesus, god will bring with him those who have fallen asleep. For this we declare to you, by word from the Lord, that we who are alive, who are left until the coming of the Lord, will not proceed. Those who have fallen asleep, for the Lord himself will descend from heaven with a cry of command, with a voice of an archangel and with the sound of the trumpet of God, and the dead in Christ will rise first. Then we who are alive, who are left, will be caught up together with them in the clouds to meet the Lord in the air. This idea of being caught up in the clouds and meeting the Lord in the air is it blows my mind and I cannot wait. Whether that's yeah, I just can't wait. And if you're in that position and you've lost loved ones and you're considering this, and there's trials, and there's there's heart, there's darkness, this prayer is for you, father. I believe that this will happen. I believe it with all my heart. And while I'm waiting, I know you are comforting me because this is what you do. You love me, so I thank you for doing it, for the comfort, the peace that passes all understanding. In Jesus's name, amen, I want to direct you guys to loverealityorg to check out our Bible studies. They're called Circles in loverealityorg. I think you guys would love being locked into this community and being encouraged and edified in truth every single day of the week. So check it out, loverealityorg, and jump in, get involved. Thanks you.