Pivot Or Die

showed us um your son is missing the entire left side of his brain. And I'm like, how I'm not computing anything. My God is in control. Like he knows my baby. Basically, he knows him by name. >> No, we were not ready. >> We were not ready. I put my head back. I hear God say, "Trust me. you can do it and you can pivot and you can figure it out and before you know it it's going to feel normal. >> I just remember like saying like my boy like my son, you know. >> Welcome back to the Pivot or Die podcast. My name is Seth Quaser. I'm your host and today I am joined once again uh for part two by my beautiful wife Lauren Quaser. Lauren, thanks for being on the podcast. >> Yay. Let's do it. >> Let's do it. Um last time, if you guys haven't listened to our our first episode, um we we talked about uh the beginning of I mean we talked about Lauren's whole life and then kind of the beginning of our marriage and um you know, porn addiction and depression and how we kind of got through those things. And so I think that that's really um that's really good context to have um for even diving into this episode. Um that was our first big pivot if we thought about our our life. It's it's it's the big first um I don't know adversity and like you know stumbling block that we had come up against. Um, but now we get to dive in in this episode um to our kids with >> two miracle babies. >> Two miracle babies. >> Crazy. Two different stories. But >> and this is where this story that we're about to tell is where Pivot or Die comes from. Mhm. >> Um, in the midst of the most difficult and testing situation that we have ever faced in our entire life, news that was crippling at the time. >> Mhm. and felt like there was seriously a conscious decision that we made where we had to decide between dying, curling up in a little ball on the floor and just staying in a fetal position and never getting up and seeing the light of the day again. >> Yeah. >> Or pivoting and and figuring this thing out. Yeah. >> Um and that's where pivoted came from in my office when I was >> Yeah. you know, putting together something and and >> and we can talk about like that specific moment too, like when we get to it of like >> Yeah. >> because that there was it's it's a very um specific conversation that I remember for sure. >> And so um I I think leaving off where where we did last time. I mean, we had been married for a year >> right? More than that, a little bit. >> Um when what? >> Oh, when I mean when we had Doug, I mean, we'd been married almost two years, right? Um, no. I think it was longer than that because it was I think we got pregnant with him August of the second year of our marriage. So, it was like two years and a couple months and then around three years when we had him. >> Yeah. Yeah. And so I I mean we had just walked through this whole season of um dealing with uh depression and with pornography addiction and um you know we we kind of come out the other side a little bit of that and and um had had some months under our belt where we were really felt like we were doing well. Mhm. >> Um we were plugged into uh a local church here in in Orange County and um we were surrounded for the first time by uh by a bunch of families and >> that were kind of around our age and same season of life. >> Yeah. And so getting to learn from a lot of those uh those different families that were there because you had never been around um around families with young kids much, right? >> Yeah. Yeah. Honestly, I was pretty much like the youngest. I I was always the baby. Yeah. >> So, I'm like the youngest of all of our cousins. I'm the youngest sister, you know. >> Yeah. >> Yeah. So, it was interesting. >> I mean, being being around those moms and being around those dads and really being at a church, too. I think that emphasized the importance of the family and how how amazing that was >> for me. That was something that was definitely like I'm I'm excited to like let's let's start a family. And I think I think you said it well. Do you remember the the um uh you used to say that it didn't feel like there was something missing? There felt like it felt like there was someone missing. >> Missing. Yeah. >> Right. >> Yeah. >> And I think too like when when you're not around a lot of families, it feels like oh my gosh, which not saying that having a kid isn't a huge life change, >> but I remember it kind of having like some really good conversations where it was like your life doesn't end when you have kids. >> Yeah. And that was really interesting to me. >> Yeah. >> You know. Yeah. Because I do think I mean again it's it's just to speak to this real fast like there are a lot of different families and the the saying is true that it's like there's people that would come to me and to you I'm sure too and be like you know right right when you had kids that moment everything shifts right and like like you know you see this light and like you say you know what I'm in the back seat for the next 18 years >> and it's just like what are you talking about, dude? Like >> like you're in the driver's seat. Position your kids. >> Yes. Position your kids. And also like >> it's now they're they're hopping in the car with I mean it's like like this is we're now moving forward as a family unit. And I think that that's what we've done really well even despite the >> Yeah. >> situation that we ended up being in. But I mean >> we um we decide okay we're gonna >> we're going to go for this. We're gonna we're going to start a family. Um, and we uh we make that decision to try >> and um we end up seeing that pregnancy test >> like literally first try. >> Yeah, it was first try. I >> was like, "Okay, well obviously that was meant to be." >> Yeah. Yeah. And so it's like okay definitely felt like oh wow like this is a chapter that like God wants us to move forward into. Mhm. >> I remember having that feeling that was like, wo, this is crazy and like this is awesome. But like it definitely felt like um like blessed like this is like let's let's move forward into this. This is the natural progression >> totally >> of where we're going, right? >> Yeah. And I mean it was um I don't know that that first that first trimester. >> Oh, was like mentally because again if you go back to the first episode, it's like I've been kind of in and out of this space of depression. Yeah. >> And when I look back, you know, obviously it's kind of like, okay, cool. Like you make it on the other side of depression and immediately decide to have a kid. Kind of interesting. >> We we rushed it, >> you know. We rushed it and nothing we can do about that now obviously. Um, so yeah, I mean it was kind of a decision that we made and that's awesome, but I it genuinely that first trimester of pregnancy even though I felt a little sick and whatever, like felt like a natural anti-depressant was pretty crazy of like >> I I remember just feeling the bliss. >> Yeah, >> for sure. For like the first entire half of my pregnancy. Yeah, it >> was pretty wild. >> Yeah, it's awesome. We're we're going and you know, I think that it it is one of those things you find out that you're um you know, you guys see that pregnancy test, it's this for some it's a moment of horror and for others it's this um this moment of like, wow, we're so excited. And then it's like over that over that ninemonth period, you begin to build up kind of, you know, an image of what you think your kids's gonna be like and what it's going to be like when their kids here and like, >> oh man, I just Yeah. You're thinking up names and you're thinking of what, you know, >> I just like, again, I'm a music teacher. I'm like, I just can't wait to teach my kids music and like to, you know, be able to do all the things that they're into and all the all this kind of stuff. And I think that that was definitely something that um you know shattered. >> Yeah. So expectation let's like really go into it step by step. We we were >> I mean you can kind of tell the story a little bit. Yeah. Go for it. >> Yeah. We kind of talked even in the car on the way here of like I think I'm going to give just kind of like here's how the story went and then you'll kind of dive in with like memories and you know different things that jog your memory. Um so like I said first half of pregnancy is blissful. It's awesome. Um I get to my anatomy scan and for the most part it's pretty great. The anatomy scan is the 20we scan. Um they're able to confirm different um you know spinobipida different I shouldn't call them >> able to make sure fingers and toes and everything. >> Yeah. Exactly. That's where they would find out you know about cleft pallet club foot all that. >> So yeah for the most part they're like awesome everything looks good. He's got everything pretty cool. Um but there's like this one thing in his heart we're having just like a tough time visualizing but you know it shouldn't be any big deal. It's just like a tiny little thing, you know, so they're really downplaying it. Um, and we're at kind of more of like a not naturopathic, but definitely more >> um natural leaning OB. So, it was it was just kind of interesting. And they basically said, "We're going to get you in with this MFM," which is basically like more specialized imaging, and we're just going to have them take a look. No big deal. All good. And I'm like, "Okay, cool." So, long story short, they couldn't get us in until 5 and a half weeks later. And I remember it was like those five weeks just like zoomed. I mean, there wasn't even other thought in my mind like nothing just like LA bliss bliss bliss. And just keep in mind it was like we very much viewed even just pregnancies and whatever you were at pretty much every appointment if not my mom. Somebody was always with me at an appointment which is great. Loved it. Um, but you know, this appointment's coming up this week. It's been 5 and a half weeks. Can't even really remember what it was for. There was no indication of anything being weird. >> And my mom's out of town. My parents are actually down in Mexico. Um, and Seth is is working. And I just said, "It's no big deal." Like, they literally told me it's going to be a 5minute appointment, whatever. And I remember >> and double check in with you being like, "Are you sure? I don't want you to alone. All these kind of things. First appointment that you'd ever been alone at. >> Yeah. And it was interesting cuz I got a call from my doctor. I remember the night before the appointment and was very interesting vibe of like he was almost um like overemphasizing like you literally have nothing to worry about. It's going to be like a quick check and then they'll just you know send you right out of there. So I remember as he's like asking like are you sure like I can leave work and I was like he told me it's literally no big deal like no problem. Um but yeah so this all to say um I go into this appointment the first thing I remember is I just met with you know a technician. Um they start doing an ultrasound everything like room is quiet and I just remember my back like my low back just started to like ache like not a normal ache like it was something in my body felt really wrong and I still at this point was like had nothing on my radar that anything would be different at all. Um, and so, you know, the first technician walks out and she's like, "Okay, cool. I'm just going to I'm just going to um, you know, have have another tech come in here and just double check something." So, somebody else walks in. The other girl isn't present. Like, they're not talking. It's just like in and out. The room is super dark. My back is hurting. It's been like an hour at this point cuz they're redoing the anatomy scan. >> And I'm like, "Okay, yeah, this isn't a doctor. This is like a second technician." So, she's doing the same thing. It's like another 30 minutes probably. And she said, >> "I'm gonna have the doctor come in and and do just like one more scan just to just to confirm, you know, everything." And I'm and I'm thinking, "Oh, yeah." Like confirm everything is fine. Like >> you don't you don't hear about after an anatomy scan something being alarming. >> Yeah. >> So I'm thinking, okay, I don't know, maybe something's wrong. doctor comes in and it's now been like an hour and 45 minutes. My back is aching beyond belief. She comes in again. The entire appointment is silent. There's no like oh like there there's toes, you know. And what's so interesting is I'm like I have like 20 minute videos on my phone of that appointment like taking videos of what I could see on the ultrasound because I didn't know what I was seeing. So I'm like there's his toes. Like I think I like sent him to the group chat. >> Um and I'm just thinking like you know what am I what what could be wrong? >> Yeah. So doctor comes in and she basically says um we're we need to have a conversation. And at that point my heart just drops and she basically said um let me grab my technician or whatever and I'll be right back. And I just remember I texted you texted our parents. Please pray something is wrong. M >> and um yeah, a lot of it is is kind of blurry as to what she said when I was in the room, but she basically got the ultrasound out and started showing me what she was seeing. And basically what she visualized, which she didn't even know the term for it, which was really interesting. Um but she basically showed us um your son is missing the entire left side of his brain. And I'm like, how I'm not computing anything. I just remember I >> like she she basically was going through that and then said, but it's not only that he also has severe heart defects. There's an entire um they call it a co-archation of the aortic valve, but at the time she's just like, "Do you see how this is tiny? like this can't pump like the amount of blood that we need. >> And then on top of that, his entire heart is covered in immense fluid. It's like the fluid is way too big for his heart to function the way that it should. >> Um, and I just remember like literally I'm in complete shock. I start balling and I it was one of those moments where I just I put my head back and it was like one of the first times in so long after all of these periods of depression and feeling so far from God and like you know almost having just those moments of like tearing my clothes being like where are you God? >> Um and I just felt the Lord say trust me like audibly. It was like it was very weird of like I felt that moment and I just Oh, because I feel like this is actually important. >> Yeah. >> I put my head back. I hear God say, "Trust me." Right. is like I open my eyes and she said right right to my face right in that room um you know he is he is not going to survive and we believe that you need to have an abortion right away >> before they had even called you >> before before we had heard what the term of the diagnosis was >> exactly because honestly I just even remember she she was pretty honest of like honestly I don't even know what I'm looking at I've never seen anything like this before because um some of you might know the term anisephille. It's it's basically when they're able to visualize um prior to birth that there and I mean at birth that there is no brain formed >> and and babies can't live like that. >> And so she's like on her computer trying to match what this could be. Why is it happening in uterero? Why is it happening of like the brain was formed at 20 weeks and wasn't at 26? Like that that doesn't make any sense. Um so in a lot of ways like yeah I just remember I was like I need to call my husband and I called you >> and >> well but she she asked we think that or she said we think that you need to have an abortion or it was it was it um would you ever consider termination? Um, it was more it was more not forced than that, but less of like would you ever consider it to we strongly recommend at this time. >> I mean I remember you saying uh you know what like we I mean tell me what you said. Do you remember? >> Yeah. That and I think that was the thing was pretty epic moment. God says, "Trust me." And I look her in the eyes as she says, "Um, we strongly recommend that you terminate." And I basically said, "My God is in control." Um, >> and something along the lines of >> like, "He knows my baby." Basically, he knows him by name. So, at this point, we've already named him. His name is Douggee, by the way. We'll put like a picture of him here. >> Yes. >> Of now. He's He's two now, which is crazy. But >> yeah. >> Yeah. So I call you and you start rushing down the freeway faster. I'm in like Laguna Niguel. You're up in Westminster and I think you got there in like 15 minutes, 12 minutes. >> I I um >> I was teaching. I was in the middle of a class. >> Mhm. >> And you had called me one time. >> Yeah. >> And I didn't pick it up. >> Yeah. >> I was like, "Hey, we got, you know, 30 minutes left of class. I'm just going to lock in real quick, teach this, and then that that'll be good. I'd for I I think I maybe even forgot that you were at an appointment. Like it was just like, you know, >> because it was made up was going on. Yeah. >> Not a big deal. So I called your mom, didn't I? >> And it was um from what I can remember, it was Stacy that ran over to my class >> because Stacy was a assistant. >> Was my mom's assistant. Yeah. >> Yeah. >> And >> that's crazy. So yeah, Stacy, who's one of the teachers here, she runs over to my classroom and I just remember like seeing this look in her eyes that was like, >> "Yeah, >> she came into the classroom. She goes, "Hey, Seth, come here." >> Mhm. >> And I walked outside and she goes, "There's something wrong. You need to call your wife." >> And I walked out into this little hallway at the top of the stairs and I called you. And um I You don't have a reference? >> No. >> For when you get news like this? >> Mhm. >> Did I tell you on the phone? you I just remember you grabbed the phone and you were like like you couldn't even say a sentence like it was just like >> you know you were in hysterics and it was like >> what is going on >> from like a normal day >> where we're having a baby >> to the worst day of our lives >> to the worst day of our lives and >> we I hop in the car driving down there And rather than um the the doctor had said, "Hey, like I'm going to tell you what this is." >> Mhm. >> Um and so as I'm rushing down the 405 >> Yeah. >> Uh the doctor >> Mhm. >> for the first time says the word schisphily. >> Mhm. and um tells us that this is something that is a broad term um for any uh any kid that is missing a part of their brain and in place of where there would be brain tissue. >> Um there is actually a a cystic structure. So there's a a cyst that grows in place of where that brain tissue would be. It's like a whole like I think she said like the broad term would be like holes in the brain which I'm like that's >> it's like what are you talking about >> you don't hear about that you know >> and and so I get there I rush upstairs we're in this meeting room we sit down and um yeah it's just like I I mean I feel as though by that time it was almost like everything had gone numb. >> Oh yeah. I I think we both sat there and literally just like >> there's no tears at that point. >> Yeah. We just listened to what she had to say. Which it's just interesting because I feel like when doctors are placed into and we've had this even in our in our daily present life now with him. It's like when doctors don't know how to fix something, how to heal something, they have a really tough time explaining um even like what it is, which is very interesting. And I think it's one of those things we we think about doctors as experts. >> Mhm. >> In everything. >> Yeah. >> And I think that that's a fault on us. Um and something that we with being now medically complex parents of a medically complex kid like you have to understand that like a doctor is not a specialist >> in the in you. Yeah. >> Right. They are um very well educated on a broad spectrum of a lot of things but when there is something as rare as porphily or schizophil >> um >> uh they don't like you said she didn't know the term of that diagnosis the water gets muddy for sure >> and and so I I just remember um going okay what does this mean what does this mean for our >> I remember you asking that a few times >> and Okay, he's he's missing half of his brain. He's he's got, you know, doesn't have the left side. What does that mean? >> And um her kind of basically saying, "We don't know." >> Yeah. >> Um this could very easily result in death. >> Mhm. >> Um this could your your child could be born and be paralyzed. >> Mhm. They could have severe learning disabilities. >> Um they could have no independent skills. >> Yeah. >> Um or and this is the crazy part or >> he could come out perfectly fine. >> Totally fine. >> Asymptomatic. >> Yeah. So like >> missing half of ring with no symptoms. >> Every option on the scale. And it was just like >> you just there was no nothing to grab on to. >> Yeah. >> Except for the promise that God forms babies in the womb. >> Mhm. And at that point it was just like it was so hard to believe all of even the things that she was saying because there he is like literally in my womb at that point big enough to like I'm feeling every limb that he has kick around just like a normal kid you know >> and so it's like what are you talking about you know and I remember feeling that way of like you're wrong like there is no way but you know you also can't >> um miss the picture you know. Yeah. But then I mean walking out of that appointment >> Yeah. >> getting into the elevator. >> Walking outside. >> Mhm. >> Like I just remember me and just with the way that I was raised too in these kind of situations, I kind of shut down. >> Yeah. >> I go kind of emotionless. >> Mhm. And um I think that uh like any I don't think that that's necessarily a good thing. I think that there's um it's allowed me to be pra pragmatic over different things when I need to be in really stressful situations, but I don't think that that's a healthy normal way to respond to news that your kid is missing half of his brain. But >> but but that being said, a normal response is uh hysteria at at hearing this and that is where where you were at. >> Yeah. >> I mean getting into that elevator >> trying I just remember in my mind going like I just need to get us to the car just >> and then we can break. >> I just need to get us to the car >> and then we can break. And like all along the way it's like like you're just falling. >> Yeah. and me like having to hold you and pick you up and like >> I just remember yeah throwing myself like against the pavement which is and then against your truck and you're trying to get me in the truck and like I think obviously you had to kind of meet me where I was at at that point and yeah when I think about that I yeah I I can like feel it, you know, in my belly for sure of just like the pain of it. I just remember like saying like >> my boy, like my son, you know, >> and just like it's like that saying kind of like when one mother cries like we all cry. And like I just remember like >> feeling um I never thought that I would experience grief or pain like that. And and I can tell you exactly why to kind of just press pause for a second. It's like done a lot of work looking back at that time in therapy and the version of my son that I thought we would have died that day. Mhm. >> And it's okay. I think even just speaking to other medically complex children um or parents of medically complex children or getting that diagnosis, especially when you get it before you get to meet your child. >> Um there's a grief there and it's okay to hold both of like I welcomed a new son and lost the one that I thought I would have that day, you know? And I think that that's those are words that we have now. >> Yeah. >> That we >> Yeah. >> had no idea at the time. >> I just remember we finally got into the car and we closed the doors. >> Mhm. >> And it's like like a ringing. >> Yeah, for sure. >> That's just like what dream am I in right now? >> No, it definitely did not feel real. For sure. And I remember we um that's when I broke. I I started crying there, too. >> Mhm. >> And um I don't remember the order of events, but I I just remember one of the most impactful like just these like, oh man, this is such a gnarly moment. >> So, we're sitting in the car. We just gotten this diagnosis. Our son might die. our son might be totally fine, but he's missing half of his brain. And um I just remember us singing it as well. >> Yeah. >> In that car. >> Yeah. >> Um >> just like voices shaking. >> Yeah. >> It's heavy. And then I remember we called our parents >> and again my parents were down in Mexico and they like literally left like 10 minutes after that to come be with us and then our families we didn't know this at the time. Oh wait, yeah, no, I guess we did. All of all of our family like flocked to our sister-in-law's house and like literally we just drove straight there. M. >> And I just remember just like again it's like such a picture of just like watching people weep with you is >> like I just remember looking and them looking at us and saying what does that mean? What does that mean? >> And it was just like that questioning point of like what does it mean? You know >> like and just being there. I remember like just that moment of like having people having a place to just go like yep we're going there. Um, I remember like that really solidifying just like a family memory too of like this is not just for good times. It's like >> Yeah. >> It's for the worst ones too, you know? >> Yeah. >> Um, yeah. So, the time goes on. >> Time goes on. I mean, it's it's one of those that's just we're left with so many questions. >> Yeah. Um, but I think that um, time goes on. >> Can I give >> There was an appointment. >> Yeah. >> That was scheduled for >> I mean, it was supposed to be It was supposed to be like, "Oh, yeah. It's in like a couple weeks or whatever. We'll get this scheduled." And it was like, "Yeah, it I think it was like a month." That was like 6 weeks. And it it felt >> like >> the long the longest waiting period before he finally was going to get an MRI. >> That was the whole thing is that they and they kept saying these phrases like, "Well, an ultrasound picture is just not as clear." I remember them saying, "It's like watching a TV in HD versus like a a black and white TV, like old school." So, sometimes we miss details. And in my mind, what that said is >> they're wrong. >> Yeah. maybe it's just a sliver >> and it's not as bad as it was or maybe they'd be able to see more detail of of all these things. >> And I think that um truthfully when I when I look at it now uh as a as a coping mechanism I think um I I was just like God is going to heal him. >> Yeah. No. And I mean, who wouldn't be I feel like at that point of just like we believe in a God of miracles, 100% believe God could have healed him if if that was his plan at that point. But >> but it it was like >> what I'm praying like every day like we're talking I'm like don't worry like he's going to be okay. >> Um and it's it's a term now where I'll say he's fine, >> you know? But we do that because he's just the best he's the best kid ever. But I mean it's like we during that time we're like you know my my dad's a missions pastor too and so I mean it's like he sends out a message >> the bat call we we refer to it >> the bat the bat signal >> we start getting messages from people all over the world that are um in Haiti and Uganda and Nepal and in in Europe and um in India and like it's just like there's so many people that are praying for our boy. >> Mhm. >> And God's going to do it. Yeah. >> Like he's going to and like almost to where like I I'm not processing >> what what >> the news that was just given because it's like don't worry, God's going to do this thing. >> Mhm. >> And like I fully I I agree with you on that. Like God could have fully healed him right there. >> Yeah. And he still could. Like we're not we're not those people that are like and he didn't do it. So, but I mean of course in the moment it was like >> who are you? Like it was really understanding and having to again then grieve like my idea of who God was. >> Um why he allows the things he does like what is the whole point of all this and like that was definitely a season of like having to figure that out and it was a long one. I mean I feel like >> we definitely struggled with some agnosticism in there. um >> feel like that was that was uh later. >> Yeah. >> But I'm just saying on the journey of like, you know, >> it's it's one of those where again when you're faced with something like this, you're faced with a real hardship. >> Yeah. >> Um it is either that there is hope in things unseen. >> That's what the Bible's definition of faith is. >> Um is hope in things unseen or or not yet seen. Um and uh or there's there's the doubts that you do really have to face. It's like what if this is all just make believe and something that we do to make ourselves >> make ourselves feel better but life sucks and it's bitter and what if there's just no point and it's just let's >> let's curl up in a ball and die like that's why not. Yeah. Um, and I think that that was through this whole season that there's there's the duality that's happening in your brain >> for sure. >> Um, >> yeah, >> between those two things, >> which again, people don't talk about it a lot, you know? It's like you want to you want to be the person that can just say God is good, you know, and moving on. But I really want to go through just like a couple details of like things I remember of like, >> and this was the thing you're struggling with like is this all, you know, make believe, whatever. So, we go to this appointment. What we're told about this appointment is that we're gonna do an ultrasound, a fetal or maternal fetal echoc cardiogram. So like through me to him, >> his heart. >> Yeah. >> Um and then same thing with the MRI. So like I went in the MRI obviously. >> Just to preface this beforehand too, like before this, we are not doctor people. >> Oh my gosh. No, we know. >> I don't know the last time that I went to go get a checkup still right now. I don't know. But like it's just it's being around the hospital, being around doctors, all that kind of stuff. It's just something that we um it was just not really a big part of our life. >> No. >> Which praise God. >> Then this happens and we're thrust into >> I mean appointments at >> we know we know the chalk hospital um menu better than some. Let's just say that. >> Um and so I mean we go to this appointment. We're going to do the echo cardiogram. We're going to do the ultrasound and we're going to get an MRI. And that MRI in my mind, you guys, like it is like I'm holding out for this MRI that's like this is going to be it. God's going to do this miraculous thing. And I mean, it's going to be something that resounds throughout the whole world. >> Yeah. >> And that day we do the ultrasound. >> Mhm. Um, we do the MRI and we do the echo cardiogram. Now, the echo cardiogram, >> yes, this is a big one. >> All of those things that were like the severe heart defects and there's fluid all around his heart and there's all this kind of stuff like it was a a night and day difference. >> Yeah, >> it was um >> which was miraculous. as he grew cuz they're growing so much like you know it's like the full >> structure should kind of be formed by that point. So we truly do believe you know that God did choose to show favor on him like in that >> all that fluid in his heart too that it had it like shrunk down to this tiny little thing that they're like this is still maybe a little bit more than what we'd like. It's like we're in the safe zone. >> Yeah. >> It's like okay cool. And then um we get to meet Dr. Jolly. >> Yes, exactly. Which lifesaving? >> Dr. Jolly uh was >> was the first doctor from diagnosis point to the point we were at that actually referred to him like as our son and as from his name >> as Douggee. She said, "What's his name?" >> Yeah. >> Before it's it's a it it's a >> fetus, >> you know, fetus. all these things. But um it's again I just I just want to preface this. It's like our our worldview, our faith, we definitely hold to um the fact that God makes life and that us making a decision to end that life because of something that we want or um because of the unknowns of what that life could look like >> um is uh something that is not for us to decide but is in God's hands. >> Yeah. Well, cuz at that point too, they basically gave us like a huge chance of of miscarrying and we our part of our prayer too was like, Lord, if he's not going to be compatible with life, like take him home now, >> take him home now. I remember that prayer. >> Yeah. >> Um saying, "God, either," and in my mind again, it was it was black and white. That's how God works. But I I said either God heal him, like restore his brain, help him, or like if he's not going if you're not going to do that, would you just take him now? >> Yeah. >> And um I'm very grateful that God chose not to take our son. >> Yeah. >> Um and uh you know, but he also chose not to to fully restore his brain. >> Mhm. >> And um in that in that ultrasound, because you don't get the results of the MRI right away. >> Yeah. Um, in that ultrasound is when Dr. Jolly comes in, she introduces herself, asks for Douggee name, um, is going, "Yeah, look, he's got his >> fingers. He's got his toes." Like was like, "Ah, dude, it's >> um but then yeah, they went up to his brain and uh she it was quiet." >> Mhm. >> And >> and I think she just kind of allowed space for that too of like >> Yeah. And I I think that at that point we had done so much research on what ultrasounds look like and what MRIs look like and we had the pictures from the other ultrasound that like we could identify >> Mhm. >> Um we could identify what was fluid and what was not fluid. Yeah. >> Just from that ultrasound image. And it just was a moment >> which should we just go ahead? I mean, I think it would be good if we insert that, too, of like what that MRI looked like when he was >> This is what that MRI ended up looking like. >> Mhm. >> Um, and that image >> marked you. >> Yeah. >> Mhm. >> Um, yeah. >> Yeah. >> And I remember that night >> Yeah. going home after we had prayed fervently for God to heal our son and God chose to not heal him yet. >> Mhm. >> Um that was that was pivot or die right there. I think. Yeah, that's that's definitely when it was >> that moment. We were crying on the bed, >> laying in bed in the dark >> and having a conversation that was like what if this is all makeelieve? >> Mhm. >> And what if there is no God? M >> and um we prayed and he didn't give us the answer that we wanted him to. >> Mhm. >> And what if there's just actually nobody out there listening? >> Yeah. >> And I remember having this thought. I I said this out loud that was like, you know what, there's two options. >> Mhm. >> And I said, option number one, it is all fake. >> Yeah. I remember that too. >> It's in my life truly one of the the like it is a pivot or die. It just is. It's it's pivot or die as >> I feel like you really have to have the context of like if you know this man personally like >> that is maybe the only instance up until that point where he would ever say something like that >> for for yourself >> of like your belief being tested shaken a little bit you know. >> Yeah. of of really I mean I think that everybody everybody has doubts and questions and these different things and whatever and any Christian that says that they have no doubt or or they have a 100% certainty in these different things um >> they're lying to you. >> Yeah. They're they're just overemphasizing on on these things. >> Um >> because if you had 100% certainty then uh uh >> we wouldn't need faith. >> Faith and and hope that it's like those are things hoped that you haven't seen yet. That is the definition. >> That is so good. If you had 100% certainty, there'd be no need for faith. >> Yeah. >> It's like so good. >> Yeah. >> But I mean, it's one of those that's really like, okay, maybe it's all fake. >> Mhm. >> Maybe it's all we've just been praying to the air. >> Yeah. >> Um >> or maybe he's there and he just doesn't he doesn't >> Yeah. And that's the agnostic side of things. Maybe he is there, but he just is, you know, sitting back with a bowl of popcorn and just eating and, you know, watching us play out and suffer. And it's like >> that that was really, really deep. But the other side of it >> saying that's one option. >> Yeah. And the other option is that he is there and he did make our son and he does know our son >> and he's doing this for some kind of purpose. >> Mhm. >> That we don't understand yet. >> Yeah. >> And it brought to mind, you know, scriptures that say um his ways are higher than our ways. >> His thoughts are higher than our thoughts. Yeah. And it's like I I do I cannot think this >> like I cannot think about this in a positive spin and like you know I do that but it's like >> just >> this is a pivot or die moment. >> Mhm. >> And if if this is true then let's just >> who cares? >> Mhm. >> You know. >> Yeah. Um, not even like let's just end it here, but it's like let's just live it up and let's just like >> numb and let's escape. >> Mhm. >> Because nothing matters. >> Yeah, for sure. >> That's that was how that one side felt. And the other side is like >> the other side and maybe it's how we were raised and maybe it is and I'm willing to admit that too. But it's like >> it felt like there was an anchor. >> Mhm. that there was solid ground. There's a scripture that says um it's a parable that Jesus talks about the man that built his house on the sand and the man that built his house on the rock. >> And u the rock being uh the word of God. And um it it Jesus says that both of these men built their houses, one on the rock, one on the sand. The storms came and the winds blew and like >> that is um that's going to happen. >> Mhm. It's guaranteed. it is guaranteed that we are going to go through hard things. >> And then my brother like I remember maybe not that night but I remember him sending it to me of then on that same note like the the quote that says like I will kiss the wave that throws me against the rock of ages. And it's like oh that >> let's say that one more time. >> I will kiss the wave that throws me against the rock of ages. Mhm. >> And I think I think what what there there's um um before that in the in the quote it says, "I have learned >> to kiss the wave." >> Yeah, that's so true. >> That crashes me upon the rock of ages. Thrust me upon the rock of ages. >> So good. >> And I think that that is an old man >> like >> it's an old man speaking to the lessons. um that he's learned through the hard things that he's gone through and like I >> Mhm. >> even now I'm like oh I would kiss that wave. >> Yeah, totally. >> Um but at the time at the time I did not want to at the time >> of course. >> Um it was crushing and uh >> you know it's just at that point day by day. >> Yeah. Hour by hour for sure. >> Yeah. And I think that it's again just just um giving a picture of of what this looked like too. It's like there were days where it's like you're you're fine. >> Mhm. >> You're walking throughout your day and your mind's not on this, right? >> And then there's an hour or there's 30 seconds or you're walking down the street and you see a little boy walking next to his dad and you're like, >> "Yeah, >> oh my gosh." And >> and that still happens. >> Yeah. that didn't go away. >> And um so we kind of we kind of accept this. I remember saying this and I don't know I I don't necessarily agree with this now. >> Um but I remember saying at the time uh okay I'm no longer praying for Douggee to be healed. >> Yeah. And I Yeah, I think that was important. I I'm I'm no longer praying for Douggee to be healed and therefore I have to accept like I have to look at what this actually is and assess the reality of it. >> Um and people would say I'm I'm praying for Douggee that he would be healed. And I would say you know what I've I've stopped praying that prayer >> as much because that is not the point. Mhm. >> Um instead, I started praying that whoever our son would be, >> that he would be a man that loves God. >> Mhm. >> Um he would be a man that is um I have a little student named Nolan. He's awesome. He's my little buddy. And um I'd taught Nolan for a couple years before uh before we had Douggee. >> Mhm. >> And just Nolan is one of the most inquisitive, brilliant little boys in the whole world. Like he's just so awesome. M >> And I remember before we tried for a kid and after we found out Douggee diagnosis, after Douggee wasn't healed, my prayer was like, "Lord, would you make >> Douggee as inquisitive and smart and like awesome as Nolan is." >> Yeah. >> And those those were prayers that I started praying um >> instead of the healing prayer because I said um you know what, God has given us our answer for this right now. >> Yeah. It's uh No. >> Yeah, >> it's not yet. >> Yeah. >> And um >> Yeah. >> Yeah. >> I don't know. >> For sure. >> Um and so we go through this whole thing. We're now having the stress tests, dude. Oh my gosh. >> Yeah. So now I'm in the hospital like every other day, >> which is awesome. getting getting these stress tests, making sure that his heart's going to hold up, making sure that he's >> the biggest concern then kind of um did turn into uh we the cystic structure that exists where the cyst is. Um if that breaks, it causes something called hydrophilis. And um it's actually a lot more common of like people have a lot of excess fluid in the brain. But if they have a full brain structure, you put a VP shunt in and it's all good. >> And a shunt is just is a little um drainage thing that they put into the brain that that drains uh spinal fluid from the brain into the stomach. M >> um and that's how it relieves the pressure that uh um hydrophille um >> hydrophilis >> hydrophilis makes. Um but I think um really quick just because I don't feel like we've done this. Um what it ended up being is that uh or no actually so at this time we thought that the diagnosis was schisphily which is a a a diagnosis that is not good. >> Um and it's a very very very uh seizureprone >> um diagnosis. Um >> it's basically where there's there's no white matter surrounding the spot that is affected >> structure. Yeah. So then it's like think just open wires like touching each other and when fluid goes through them it sparks a seizure and so it's it's um a little bit less uglier cousin porcil has the white matter >> but we had never heard that word yet. Oh yeah, >> remember totally or sephily? We hadn't heard it >> and um >> I mean that that ends up being his diagnosis. But before we get there, I do want to talk about like >> we um you know I I'm going to I'm going to pull this out real quick just because um >> I have a a note in my phone >> that I um that I had started through this whole thing um just called Dear Douggee. I have one too that's just called Douggee. >> Um I'm going to read this first part. This isn't even what I was going to read, but um this is January 20th, 2024. says, "Dear Douggee, two days ago, the doctors told us that the left and right sides of your brain haven't developed as fast as other kids' brains normally do. >> It has been a crazy 48 hours." Oops. It's been a crazy 48 hours, son. But our hope has been set on God. He has a plan for your life. God knows you right now inside your mother's womb. >> Um, but I want to read this scripture. Do you remember which one it is, babe? Even the darkness is not dark to you. >> Oh, yeah. It's um Psalm 139. >> Yeah. And um I mean this even the darkness, this is Psalm 139. Um even the darkness is not dark to you and conceals nothing from you, but the night shines as bright as day. Darkness and light are alike to you. >> For you formed my inmost parts. You knit me together in my mother's womb. I will give thanks and praise to you. >> Mhm. >> For I am fearfully and wonderfully made. Wonderful are your works and my soul knows it very well. >> Yeah. >> And that portion of scripture. Now, this picture of Douggee brain >> that we had, um, I'm going to put this on here too on my note. Do you see that? >> I know. I remember that. not dark to God >> in that portion. Yeah. >> In that portion. >> And then I just remember too that was like literally probably that same day I'm like reading that scripture. It's like God has made us whatever. And then you know I'm a mom and so I look up like what does the name Douglas mean? He's named after Seth's grandpa. And >> I have that photo right here too. Look. Yeah. Um so I mean >> literally the definition is like the dark sea. the dark sea, >> which is like if you don't get what we're referring to, it's the fact that like fluid and the way imaging appears, there's a dark spot. There's something missing. >> Yeah. >> Um but it's like we've seen all the ways that God has like shown up just in very odd ways of like I meant this. I meant to do this. I am still intentional. >> I did not forget about you, you know, or him, >> you know? >> It's just wild. Um, but then just real quick too, because I feel like it's kind of important to say and then we'll kind of move on to peace, right? >> Well, I I think that I want to talk about um I mean like we go in for the delivery. >> Yeah. Yeah. Yes. The delivery. >> You go. Yeah. >> No, I mean we we basically like um you know there is an aspect of this too. Yes. Our kid is going to be missing half of his brain. And we don't know what that's going to be like. Um, as much as anybody wants to uh not say this, I will say this. It's like when you have a diagnosis that's given in uterero >> Mhm. >> like your brain starts like going of like what is like >> this little this little thing that's going to come out and like is is he going to have a wing? Is he going to be like I mean at that point we couldn't like really imagine other than just like is one whole side of his face going to be like deformed and I just remember like praying I'm like Lord like if he has to live with this like please let him be beautiful. >> Yeah. >> It's just crazy. >> I mean we go in you get induced. Um, >> they had to induce me because still birth and um, just rapes and my blood pressure was out of control and I had glucose issues. Needless to say, it was a hard pregnancy. >> Seven, >> apart from the apart from the Douggee stuff. Yeah. The rest of that pregnancy was was really really tough. And um I mean we we go in you get diagnosed not diagnosed you get induced and >> gonna we're gonna go ahead and put a trigger warning for all the the first time moms or moms who are pregnant who don't want to hear about >> I think it's it is also one of those things where like anytime a mom tells the the story of her birth >> there are some moms that are it was just the most wonderful thing that's not our story >> yet I also want to preface this It's it's not going to be your story. This is not a this is not a prescription of what's going to happen to you. Not at all. >> Um and so that being said, it's like uh >> you know, we go in, you get induced and um it was like >> how long? 48. >> Yeah, it was like in total 48 hours, 36 hours of contractions and from like being in active labor. But I will say too, I think, and this was just a really interesting thing is like when you kind of moved off from like, okay, I'm going to shift my my prayer focus from just being like healing, healing, healing, like mine kind of shifted from that as well because I feel like I was like idolizing it, hyperfixating on it. >> Um, and I kind of shifted more my birth of like or my my prayer to like, okay, so like now I have to deliver him and like now he's going to be like leaving where he's safe. And that felt really vulnerable, but then it really freaked me out even extra about like the delivery process. Um, and it's kind of cool cuz like when you deliver naturally, um, you there's a lot of reflexes that turn on when the baby exits like the canal the normal way. Um, that help their brain just turn on different reflexes. And so my doctor and I did decide, I mean, with you as well, that we were going to try to do it just like natural. >> Um, and by the way, when I mean natural, I I don't mean without like medication. I just mean the normal way. >> Yeah. >> Um, but yeah. So, do you want me to >> And no, I mean, it's like Yeah. I mean, it it was um in that room again. It was really hard, but it was also like we're we're like playing worship music. We're, you know, your mom is in there with us, too. Like, we're doing this whole thing. Then it's like comes time to push. And it was just I I'm just we're we don't have to go super into detail of this cuz I know that it's still hard for you, too. But it's like um you gave everything that you had to trying to get Douggee out naturally. >> Mhm. like it it was one of the most impressive >> Vikingesque things. Like it's just >> again it's just like this moment that's like oh my gosh she's so strong >> and >> you gave everything to do that. >> And Dr. Jolly came in, that wonderful doctor that she is, and she said, "Len, the amount of effort that you have put in does not match the result that we're getting." >> Mhm. >> And I think it's time for Douggee to come out. >> Mhm. >> And she did it in such a gracious way. And I I remember you kind of going, I I failed. Mhm. >> And she like got up in your face and was like, "You did not fail. >> Like you you did this >> and we're going to get your son out." >> Yeah. >> Let's go get him out. >> And that was on hour four, by the way, >> of pushing. Yeah. >> Of contractions on hour four. And um you know they wheeled you back emergency C-section and >> because okay I also do kind of have to set the scene of like second push they were like oh oh this is going to be easy. We see the head. We see the head. And basically it's just it's a thing with when you have low muscle tone you don't realize like babies actually kind of like squirm and and help like get out. Um, and Doug just was not was not um willing to cooperate. >> And it's just truly I don't know. I think about it now and I'm like, yeah, >> what if you know him going through the canal would like have done something to his brain or like what I'm just like there's so many different things. >> There's definitely a reason. >> But yeah, there's a reason and it's just that wasn't the way that God wanted our son to enter the world. And um >> so they rolled you back. >> So they roll you back. emergency C-section. Just so intense. >> They push him up. >> So intense. >> It's crazy. >> And um you go back in there. I just remember you shaking on the table. >> Mhm. I mean, I'm just exhausted. Like you're not allowed to eat anything. Like I'm exhausted beyond belief. Like anybody who goes through labor, it's like >> Yeah. You hit that finish line, you get your sushi, you're like, "Yes." I'm like, "Please let this be done." Like, >> yeah. >> And um you know, through this crazy process, I just again me being the person that I am, like they go, they have little sheet up and I just kind of stand up and look over and it's like intent and then >> he peeped he peeped over the curtain >> and then Yeah. Yeah, I just I just remember the anesthesiologist coming up and being like, >> "Hey, >> working on YouTube." >> He's like, "I had a 300 lb Samoan man in here uh two days ago and he looked over and he passed out. Just go ahead and sit down for me. I'm going to need you to sit I'm going to need you to sit down. >> I'm need you to sit down, sir." Okay. Sick. Sit down. All these kind of things. Um they they pull him out. >> Yeah. >> And I'm like trying to keep my eyes open at this point. >> Yeah. And um it they pull him out and I remember hearing him cry >> and going like, "Okay, it's like you just do this." When your kid has a diagnosis, you're like, "Okay, check. He cried." Like, >> there's a checklist of like things that need to be okay. >> Mhm. >> Like, "Okay, he cried >> and okay, he's got his fingers and okay, he's got his toes." >> But they pull down that sheet that's covering you to let us see him. And I just remember the first like instantly I saw him and it was like he looks like me. >> Yeah. >> It was just like I >> mean I don't think I look great, but you know I I don't It wasn't like It wasn't like a monster. It was like he he was >> he was a little boy >> and he's here. >> Yeah. >> And he's crying >> and he's my son. Can we put a picture? Can we put >> Yeah, there's a picture of him. >> So cute. >> Um, and then um they, you know, do the check and I I I it was really odd there. There's a um woman, her name is Nadia, that had uh prayed with >> um had prayed with me when when she had heard that we were going to have a complicated delivery and not just a medically complex kid. and she um said uh in her prayer she goes, "I feel like he's gonna have a high APGAR test." >> And it's just like again I'm like I hear that I'm like, "What does that mean? What's an appgar?" >> We don't know. >> But an APGAR test is like the test in 1 minute and then 5 minutes after a baby's born. That's like >> evaluation of like color. Yeah. >> You know, how are they looking? Are they okay? Do they have their fingers? Do they have their toes? Are they breathing? Are they? And he got a he got a nine. >> He got an eight on his one minute just because he was like crying a little blue. >> Um and then he got a nine which is insane. >> He got a nine in the napkar test which is like >> dude so cool. >> That's just so not what we had expected but that that was just so awesome. And then >> um there's a gnarly moment for me that was like >> okay my son is a direct admit to the NICU. So, they're getting this little bubble, >> which means Yeah. They put him in a bubble and he he goes immediately >> and they are like, "All right, your son's here. Your wife is convulsing on the >> uh the table." Um, >> which for those of you who don't know, it's like they they get a baby out and it's like another hour, hour and a half of surgery. I mean, in an emergency situation. >> Yeah. >> To get everything sealed up. And they were like, "Where are you where are you going? Are you staying with your wife on this operating table >> or are you leaving her to go and be with your son?" >> And I just remember you looked at me, you were like in full scrubs and a mask and I like it that was the last thing that I could like say. I just said go >> go. And we did and I went up to the NICU with our son. >> Mhm. and he was crying >> in his little bubble >> and it's just like surreal because you're like I didn't know if this was ever going to happen and he's moving >> Mhm. >> and he's moving all four of his limbs >> and it's like I didn't know if that was ever going to happen. >> Yeah. >> There was a possibility that he was going to come out paralyzed. >> But he's moving around. >> Yeah. And I go and I remember giving him >> a paci >> for the first time and he took it and it was just like >> I have a video on my phone. It's a little gross. I'm not going to show it, but it's >> um like >> it's just like this is my boy and he's his eyes are open and like he's taking a bottle and he's taking a pacifier and he's moving both of his arms and both of his legs and he's got all of his fingers. He's got all of his toes and like what the heck, dude. >> Yeah. And then you got to do like skin-to-skin with him. >> Got to do skin-to-skin with him. >> And I remember I really wanted that because I was >> And so you did. You came in that that day. >> No, no, no. I really wanted you to to have that because in my mind I also was like, "Oh my gosh, like is he just going to all he going to remember like going to be like niku nurses just holding him and whatever?" So I was really really happy that that you got to do that. >> Yeah. Yeah. And so, um, yeah, I mean, that night when he was born, um, we ended up getting him into an MRI machine. >> Oh, yeah. >> That very first night. >> Mhm. >> And, um, did a scan. Next day, we're in the recovery room, which just sucks when you have a direct NICU admit because your kid's not in the recovery room with you. So, it's Lauren and I in the recovery room without our kid >> and you're like in I mean in my case it's like so much pain and it's like usually I mean knowing now the second time around with our daughter it's like what makes that pain easier >> is the fact that you have a little baby there with you. >> Exactly. Yeah. >> And Yeah. But there we uh we got a call from a neurologist >> um who said, "Hey, I'm going to review uh the findings with you. Um, we did this MRI and we I I want to change his diagnosis. >> Yeah. >> Um, I'm going to introduce you guys to a word called porinphily. Okay. The schisphily, that's what we had thought it was and there's porinphily. The only difference between those two >> is that uh schisphily there is gray matter that lines the >> the cystic structure. Um, and uh what that what that means is that it's almost like loose wires. And if those wires touch, your son has a seizure. That's schizle. There's a lot more loose wires. Porcephille is the exact same thing except that cystic structure doesn't have that tissue that lines the outside of it, which means that the risk of seizure goes significantly down. >> Mhm. >> And it was like, that's wonderful news. >> That's great. >> And >> um yeah, that that's that's awesome. Uh cool. And so then we, you know, it's it's an odd thing. I think any parent can agree with this, but it's like, okay, we were there for a week. >> Mhm. >> And then it's like, all right, >> time to bring >> time to go home. >> You're bring It's like, >> yeah. >> Yeah. And you just >> you have to just jump into it and you have to learn. I didn't >> I learned how to change a diaper in the NICU. >> Yeah. >> I'd never changed a diaper before that. And then uh all of a sudden I'm you know doing the whole thing and it's just like man there's nothing better >> honestly than like when you apply yourself into that role of being a father being a mother >> and like embracing the fact that you don't know what you're doing. >> Yeah. >> But also like >> again I'm just so grateful that like something like this you guys something like hearing like your kids going to have a disability. um like these big trials, they either in your marriage, they either tear you apart or they just push you together. >> Yeah. >> And in this case, I'm just so grateful to the Lord that it's like this is something that made us >> tight. Like it made us >> stronger >> just that's like nobody else in the entirety of the world knows what this is like except for you. >> Yeah. >> And it's like we are the two two people. So, you know, people will say things and again, I I think that when there's something like this, >> everybody everybody's got something to say, >> you know, everybody uh wants to give you some words of comfort or the fact that, you know, um >> they have a down >> they yeah, they have a down syndrome kid or they like all these different things and whatever, which is like that's totally valid. And I think that we do that if you hear that somebody's grandma just died, like you automatically go, "Oh, well, you know, I had I knew somebody that died once." Like you just do that to try to kind of like trauma bond a little bit. >> Um >> I think that uh like I've said this before in in another podcast. I'm not sure if we said it in the last one, but it's like >> something that people say that I completely disagree with is when they go uh >> uh oh, don't worry. God's not going to give you more than what you can handle. Yeah. >> It's like you guys, I'm just going to clarify this real quick. The Bible never says that hearing that your son is missing half of his brain is more than anybody >> can handle. Like, >> yeah, >> God doesn't just like give you so much capacity for that. It's like, >> no, you're not prepped and ready for that. You have to pivot or die and you have to make a decision and a choice to to do that. And along the way with Doug, you guys, I mean, it's like >> um I'm just going to rapid fire real quick. It's like we uh couple weeks later found out that um Doug actually the whole reason for all of it um you know he he we we found cataracts on his eyes um and with his brain and all that kind of stuff. We found out that the whole reason for all of it was um a gene that I carry um and that was also given to him. It's called 4A1 and um it's a gene that did not uh originate in anybody else. It started in me when sperm met egg and made me. There was something happened and um a gene mutated and that was called 41. And so I was born with a congenital cataract which we didn't know until I was 20. Um we thought it would had come up from some other reason but it turns out it was probably from birth when this thing happened. Um, and uh, so I my my direct title is I am a mosaic mutant, which means that the mutation is only partially in my cells, but in Douggee it's in all of his cells. >> Um, and so that call 41 affects brain, eyes, heart, and kidneys. And um so for Doug his heart we like we just went back and back and back and back and back to the cardiologist to where finally the cardiologist if you see them now they're like hey it's just protocol that we have to call me but he's fine. >> Yeah >> his heart's great. There's nothing wrong with his heart. >> There are like three like differences that are noted of like he definitely has a co-arch of the ascending aorta. He has a bicuspid aortic valve and a PDA which was why I mean it's part of the reason why we stayed so long in NICU of like every kid has a PDA I guess that it's like whatever detaches from something inside me the placenta I don't know um but it's supposed to like close on its own like a couple days after um the hospital and his just like never fully closed it just like closed left like a little opening So, they like have to check in on those things, which I'm glad, but >> but I I mean, so we we go through this whole thing. Um, since then, uh, basically, um, Douggee ended up having these little twitches called infantile spasms. He would just kind of tilt his head. >> That is exactly what it looked like. >> Yeah. Yeah. And something that was really subtle and and turned into to being something massive. And so, um, we ended up, uh, you know, getting EEG, which is where they read his brain waves. And, um, he's got something called hydro, no, what's it called? >> Hipshythmia. >> Hips rhythmia, >> which is where the brain waves are really like crazy chicken scratches kind of thing. So, we went through all of these different processes. A pivot or die moment for me that I think of is um, >> you know, he ended up having to get eye surgery, took out his corrupted lenses, and now he wears contacts. Um, when the doctor first said, "Hey, I don't want to give your son glasses." Which I always expected that my kid would have glasses because I had bad eyes. That was something that I always thought was going to happen. Yeah. Um, didn't know that it would be this severe. >> Um, but uh, >> the doctor said, "I don't want to give him glasses. I want to give him contacts." And, um, >> basically like he had to uh, we're like, "We don't want to put contacts in our son's eye. What are you talking about? He's 9 months old." And the doctor said, "Um, you will get used to this." >> Mhm. >> It's going to it's going to be okay. >> Yeah. >> And now Douggee wears >> contacts every day. >> Contacts every day. Um when they told us that one of the things that they had to do um one of the things that they tried to get rid of his hips arhythmia was that we had to um give our little 10-month old baby injections in his calves and his thighs. um twice a day. Uh that was something that I never thought we would be able to do. >> Mhm. >> And >> that one sucked. >> That one sucked. But he took it like a champ, dude. >> Yeah. He basically did like gosh one round of oral steroids, then something else, and then another round of the injection steroids, and then now the last resort, which is what we're still doing, is the keto diet. And so he's on a 4:1 like ratioed medical ketogenic diet, >> which if you didn't know, this is really cool. Fun fact about keto is that keto was invented in the 1920s as a treatment for infantile spasms and for seizures in kids >> and like rare epilepsy. Yeah, just crazy. >> That's that's that was the whole reason why it was made. It wasn't this health fad that came a hundred years later. >> They found out it work for that, too. But for some reason, when a when a kid's brain is running on ketones rather than running on carbs, um it stops having as many seizures, which is pretty awesome. So, >> yeah, I mean, we've been through all these different things, but th those >> every time there's like this obstacle that's like that is a a mountain that feels insurmountable. don't know if I'm going to be able to give my kid injections or I don't know if I'm going to be able to put contacts in my kid's eyes or whatever that might be. Especially as a parent, too. Like, you can do it. >> Mhm. >> You can do it and you can pivot and you can figure it out and before you know it, it's going to feel normal. Mhm. >> And >> even if you don't want it to, >> even if you don't want it to, it's >> we can adapt to so much >> and Douggee has proved that to us for sure. >> Yeah. >> And I mean since then too, this is like he's in CME therapy and he's in occupational therapy and he's in physical therapy and he's like he's working so hard. He's learning to walk. He's learning to sit up by himself, to hold his head up. Like, he's just doing so well. We just went to Yoseite. >> Yeah. >> Which was the first family trip that we ever thought we were gonna I Yeah. Seriously. Boom. There's Doug with Yeah. It's the mountains. >> But I think like it's even just crazy just to wrap this up of like the dayto-day of things that it feels like we don't even talk about. It was like probably once a week, you know, he'll just like decide to go like unconscious, turn blue, like throw up and like have a big seizure episode. And sometimes they cluster, sometimes they don't. And we deal with those now. Like when those first started, it was like, "We need to go to the hospital. We're calling 911." Yep. And now it's kind of like, okay, >> just just to clarify, cuz you said that really fast, he will have um unexplained seizures that basically his oxygen level drops, he turns blue, he throws up, and then >> uh he'll come back up and sometimes he'll be fine and other times it's like he'll cluster. And this is where like this whole concept of like he's fine. >> I say it all the time because like Yeah. Even when something like that craziness is happening, >> like you said, >> at first it's like, oh my gosh, >> and now yesterday there were a couple doctors that asked us like, "Okay, so when that happens, do you guys take them directly to the hospital?" >> No. >> Nope. >> No way. >> Nope. >> Yeah. >> Cuz we don't. >> We just like, "All right, grab the amboo bag, you know, grab a towel, you know, >> grab the towel. Let's figure it out." And >> yeah, and it's not it's not to say that it's not important and to treat it with care, but it's wild how much like I feel like we definitely throughout all of our time in the in the hospital and everything like we have been very equipped of like what what do we do? How do we stay calm? >> You know, how do we almost in a way like it's easier to keep him home to deal with these types of seizures, you know? Not to say that we don't like we definitely take him in if it's like, oh, we never seen that before. >> Yeah. And we are just just a real quick thing. Yeah, we're >> so grateful for Chalk Hospital. >> Yes, >> Chalk has saved our child's life multiple times >> over and over >> and the doctors there are fantastic and it's just that has been >> I'm so grateful that we live where we do >> because if we did not work live where we did and if we did not have the access to the care that we uh have, >> Douggee's life would be a very very different story. >> Yes, totally. Um, >> yeah. And I mean, you know, nine months later, eight months later. >> And this one was not a conscious decision. Let's say that. >> Yeah. I mean, we're nine months later. How much time do we have? We don't have to. >> We've been going for an hour and 20 minutes. >> Okay. Let's sum it up in 10 minutes. >> Great. >> Cuz she's she All right. Second daughter. Peace. Ding. There she is. >> Um, nine months. name. Her name came from when we were in the hospital and we found that it was a little Oh, wait. Actually, I'm skipping ahead. >> You're skipping ahead. Go. You're skipping ahead. Okay. So, basically, picture this. I just have launched my newest business. >> So stoked. >> Bungee fitness studio. >> Yeah. >> Huntington Beach. >> Um, we'll put it in the description. So, just launched this business. Douggee and Seth are in the hospital for yet another seizure episode figuring something out. I all of a sudden I'm just like I think I'm pregnant. You know, there's like those one tell that like there's one thing on your body or like feeling that you get and you're like, "Oh, dang it." Like, come on. This this is too soon. Um, so I take that test. Sure enough, positive. Okay. Go to the hospital, tell you. You're like, we're both just sitting there. And I was like, >> you told me on the phone as we were drive as you were driving to the hospital >> and I hung up the phone and I remember like looking at Doug and he's like sitting in his hospital bed and I'm like >> like it's I I pulled out dear Douggee and I wrote another letter but it's like >> dear Douggee, you're having a little >> Oh gosh, dude. But it was not that was not the the it's not the timing we had expected. >> No, definitely not. which again it's like 100% we absolutely we love love love our daughter but you do have to understand like the last nine months our kids had like four surgeries >> like recovery seizures he's on these injections contacts it's like okay are we ready for and then also knowing then we were not ready >> we were not ready again it's like okay but now that we had found out this was genetic you know they had basically given That's like a 50% one in two chance at the time of like this this could very well happen again. So yeah, I mean that's a lot. So then pretty interesting grand opening of then my new business bunch comes. It's probably, you know, a week or two later and I start profusely bleeding, like cramping, bleeding, and at the time, like we're the only like bungee studio in all of Orange County. And so we've had to like train our own people. So at the time, like I'm teaching three backto-back classes in an hour, hour and a half long period and then coming back and doing it six classes in a day. like it's, you know, I'm pushing my body and um yeah, I'm I before I leave to go to the studio, I start bleeding and cramping >> and all I mean I think you guys were home, but I just remember telling you like, hey, like um I'm bleeding and so I'm taking tests and the tests aren't getting darker and then it was still like too early to go in for like an ultrasound >> and me just diving in and chatbt going what does that mean? You know, are we having a miscarriage? >> Yeah. >> Was there was this a false pregnancy test and were you actually just like you're like now starting your period or whatever it is. It's like >> totally it >> what what is this kind of thing? >> What is this? Which is what we've done before, >> right? And so >> we end up going in to get this ultrasound. >> 8 weeks is what we had thought it was. I'm still spotting, bleeding, whatever. And I had been getting my labs done. And hCG is the pregnancy hormone. Progesterone is in there. And I'm getting my levels done and they're super low. And I know because I had seen like chop GPT, all the numbers, whatever. Line still isn't getting darker. I'm still bleeding. I'm like, I don't understand what's happening. So 8 weeks, they basically go in, measure the the sack. They see that there's a a sack. Um, and there's nothing in the sack. And so >> they did an ultrasound. >> Yeah. >> And there was no baby. >> There's no baby. I'm still bleeding. And they're like, "Okay." Yeah. Well, this is like this is a blighted OAM. Like, I'm so sorry. You know, >> so sorry. >> Um, and and we can we can kind of see if this just like continues to resolve. Obviously, you've been bleeding for about 3 weeks or whatever. see if it continues to resolve by itself. And if not, we can bring you in for like a DNC consultation. >> Yeah. And I mean, we, you know, we'll see you back in in a couple weeks. We're just going to schedule a another ultrasound just just to make sure, >> but we can also, you know, potentially schedule like the the removal of of this sack that's empty in there. >> Yeah. So, >> and so we kind of we it it was one of those that was like truthfully it was like we were grieved >> but it was also like okay like it it's >> I yeah I think because >> yeah duality to it >> for me I had been bleeding from the beginning. So I think I was kind of like I don't even know like if I'm actually pregnant or like I had heard a lot about even just like I have a pretty bad ovarian cyst and you know so I just couldn't really I wasn't like super attached I guess at the time because I was cramping and bleeding basically the entire time. So I continue to cramp and bleed which is wild. Um but I thought it was just normal cuz I didn't see anything. and we go back in for our two week appointment. So, I'm about 10 weeks now. >> Um 10 and a half weeks. >> And >> they they pull it up and >> there's peace. She's like, "I really actually want to find the ultrasound photo cuz it's like you can see like her limbs." >> And I'm like, "Oh my gosh." There was no baby there at 8 weeks and by 10 weeks there's a little baby with a heartbeat in there >> and and it's a it's measuring with the same like she's 10 weeks. It's not like like they were like, "Oh, this is not a new baby. >> There is no way this is a new baby." And I it was it was pretty wild. Like I basically stopped bleeding completely. My hCG like skyrocketed that day, which was crazy cuz I I kept getting labs done. and they drew my labs. Um then when I went in for that appointment cuz they were like I guess you're pregnant. Um skyrocketed progesterone skyrocketed and it's just like oh my gosh for the second time like not one but a second miracle baby. Like it was just wild. And then needless to say I literally did not bleed again until >> I mean until I had my period after. So, you know, >> we're like whiplashing. >> Yeah. >> Are we having a baby? Are we not having a baby? All this kind of thing, whatever. Um Doug ends up going into the hospital again. >> Mhm. >> And um we are sitting in the hospital together. >> Yeah. and we get this email that says, "Hey, the the blood test results or whatever for um your your catererin and uh click this button to see the gender of your child." >> Yeah. >> Like, okay, >> okay, >> we click it. It's a baby girl. I knew it. >> You called it both times, honestly. >> I did. I called it both times. Uh but uh we we're sitting there, we're having a little girl and I'm like, "Yes, dude. This is awesome. I'm so stoked." You're like, "I don't know." >> Yeah. >> All this stuff, whatever. And um but we we're sitting there, we look at the hospital bed with our little baby in it >> still. And we look at each other and we go, >> "We we need a little peace in our lives." That's exactly what she is. Little Peace. >> And that's the name of our daughter, Little Baby Peace. >> Douggee and Peace. >> Doug and Peace. >> Those are two stories. So, yeah. I mean, we can't even honestly insert a photo of her now cuz she's she's uh 7 months now. >> 7 months now. She got a little helmet on. We did actually um get an amnneocentesis done with her while she was still in the womb just to kind of prepare whether or not we were up against another collagen mutation. >> Just to clarify, because it is a genetic mutation that I have, any uh children that I have um have a 50/50 shot >> Mhm. basically of of getting this call for mutation and that mutation is what causes the the brain stuff and the eye stuff and all that. So it was just like there's this level of like I just remember the the like weight of that unknown >> just being like there is a ginormous question mark >> that is looming over us >> um as we >> get to the 20we appointment >> but then even afterwards there's still like you can't tell if a kid has cataracts from their 20we appointment. We just know to put to rest whether or not this child is going to have 41 and prepare >> and I'm like I'll cope with whatever but it's like I remember again even just with the depression stuff it's like I went through really bad prenatal depression with this pregnancy which was interesting cuz I actually don't feel like it was that way with Doug. Um, so yeah, I sunk into a pretty bad spot and most of it honestly was um I think from that question of like dude not knowing. Yeah. >> Um, and then we got the the results back kind of around the same time that we got the original diagnosis with Doug. Like I think it was about 26 weeks. >> Um, and she didn't have >> Look how far he went. >> Yeah. Which was really >> um I'm was really glad that we did that because it was also like I also have a 50% chance that it doesn't happen. So then if it doesn't happen, that could bring so much, you know, relief to >> and I definitely still had had dealt with a lot of depression um past that point, but at least you're not thinking like, oh my gosh, is my little girl going to be Yeah. >> you know, compromised. And so, um, yeah, I mean, last thing, um, that I love to to do on the show, this is us talking about huge pivot or die moments that we've had in our lives, but, um, if you are a parent >> who has just received a complex medical diagnosis for your kid, um, there are no words that we can say that's going to make it easier. Um but understand that there is hope >> and that you are not alone and um I cannot confidently say that it's going to be okay. >> Mhm. >> Um so I'm not going to but I want you to know that you are not alone >> and that there is hope. Um, and I mean honestly, if I was to think about things that like helped along the way, um, there was a book called Hines's Feet on High Places. >> Yeah. >> One of the most impactful books on my life and in the midst of the hardest season that we've ever walked through in our lives. Um it was >> one of the most brilliant stories and uh yeah go the the description for that book will be below like go buy it please and read that book because it is >> absurd. >> Mhm. >> Um what do you want to say to that those parents? >> Yeah. Um, honestly just echo what what you said. there there isn't really any words and I I think that >> is there anything that helped you through like any any like books or any songs or any like >> yeah I mean I think the biggest one honestly is I I'm somebody um I found out cuz I wasn't a mom before like as a mother I a lot has changed within me of like I am very I get very angry based off of what people will say about a bear >> about my son. Yeah. Um and I remember just any sort of like just people coming up to us regarding Douggee and being like, "I'm so sorry." And >> treating it with this like you like almost like a loss. And I remember trying to process through that in therapy of like explaining like that makes my blood boil. Like I they they treat him like he's gone. they treat him like I've had this loss and like there's be like so much fired up anger that would come out of me um in those sessions until I finally hit this point uh where she kind of pointed out to me like you lost something that day and I remember like it took me so long to come to that conclusion. She let me come to it by myself. Um, but I just remember like literally curling up in a ball on her couch and sobbing because it was the first time that I could actually admit like >> there was a loss. >> There was a loss, you know, and and that's okay to admit and I think it is a journey to get there. Um, so if you're not there yet and you're newer kind of in in this journey, that's totally fine. But I do think there has to be a grieving to be like a a receiving and acceptance >> um of the life that you are being granted. So >> yeah, I would say I am a firm believer in therapy to process through some of those things because I I do think it resolves a lot of anger >> um or depression or sadness and and whatever. So >> trauma. >> Trauma. Yeah. Yeah. Exactly. So um but yeah, I mean we read that book together too, so I think that that's a good one. But yeah, that's all I'll say. >> You're not alone. >> Mhm. >> Um we're here for you. Um if honestly, we would love to hear your story. >> Mhm. >> Um and we have it's just one of the most comforting cool things when there are other uh medically complex families that um connect with each other online. even just to to be able to go like here's the here's the thing and you understand like you guys >> our son's missing to have a brain like he's he's like we we understand and so we'd love to hear your story um and love to hear where you're at um >> and uh we're here for you >> um so please our our comment section down below um if you guys could like and subscribe to this channel if it helped you that is something that is very very helpful to us and uh the hopes is that we can grow this thing real big and send it out to a bunch of people. So, if you know parents who um have kids with uh complex medical needs or um you know, parents that are going through it, um please send this to them. >> Yeah. >> And uh thank you for listening to the Pivot or Die podcast and thanks. You're awesome. This is our family now. All four of us. >> Yeah. So fun.