#882 Waffles by the Lake

Malia has two kids with type 1 diabetes.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends, and welcome to episode 882 of the Juicebox Podcast.

Today on the podcast I'm speaking with Malia, she is the mother of two children who have type one diabetes. Both were diagnosed when they were young, and are like, pre teeny age, just starting their teen years right now. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. If you have type one diabetes, or the caregiver of someone with type one and are a US resident, please go to T one D exchange.org. Forward slash juice box and fill out the survey. completing that survey helps to move diabetes research forward, you can help somebody help yourself help the Show All in fewer than 10 minutes at T one D exchange.org. Forward slash juice box. And you can save 10% On your first month of therapy. With better help. That's better. help.com forward slash juice box save 10% On your first month when you go through that link. This episode of The Juicebox Podcast is sponsored by cozy earth that's cozy earth.com where I got the sweatshirt I wore yesterday. The sheets I slept on last night and I got some towels coming to they make terrific stuff. And if you use the offer code juice box at checkout at cozy earth.com You will save 35% sitewide that's 35% with the offer code juice box at checkout cozy earth.com. If you're looking to start with ag one from athletic greens, my link athletic greens.com forward slash juice box we'll get you going. And you'll also get a free year supply of vitamin D and five free travel packs with your first order fill nutrition gaps, promote gut health and support whole body vitality with Hu one athletic greens.com forward slash juice box.

Malia 2:29
My name is Malia. I have two children with type one Sophia and Wyatt where she just goes by Sophie. Currently they are 13 and 14 years old. But they were diagnosed at five and

Scott Benner 2:44
eight. Okay, Sophie is 13. She's 14 Actually

Malia 2:48
she's the older of the two.

Scott Benner 2:50
How old was Sophia when she was diagnosed?

Malia 2:53
She was she had just turned eight. They're about 16 months apart. And he was first actually he was five years old when he was diagnosed.

Scott Benner 3:02
Is there. I mean, was that completely surprised? Are you like, Oh no, everybody in our family gets diabetes?

Malia 3:09
No, we have no family history. He was first. So when he was five years old, we had gone to Disney World. And you know, it's funny because I do listen your podcast, I feel like our our story is probably not super unique in that sense. Like we noticed all of the classic sons he was, you know, wetting the bed every single night. And since we were on vacation, we were spending 24/7 with each other, and probably noticed it a little bit more than I would have even at home, if that makes sense. We were going to like the 20 Minute Disney shows, and I would take him to the bathroom before and he would still have an accident. So actually on our way home, my husband's college friend is in ufologist. And so he just was like and you know, they're still close. And he said, What do you think? And he never mentioned diabetes. He never said that. He just said, I think I would have that, you know, checked out. So we went to our pediatrician. And she told us on the spot, you know, his blood sugar was about 380, I think. And where we were unique, which I found this, you know, at the beginning, we didn't know anything. So we didn't know this was unusual. But after talking to families that we connected with later, they were like, Oh, this that's I've never heard this, but we were sent home that day, we did not go to the hospital. So looking back on it, it was a little less traumatic, I think in that moment. But you know, as a parent, parents, we went home and started looking, you know, looking at things and so we were terrified, and we were just sent home.

Scott Benner 4:51
So when they tell you in that situation, they tell you diabetes, and you have an answers you're probably like, well at least we know what's going on. And then when they Send your home, it probably doesn't seem that like that much of a big deal at the present the idea?

Malia 5:05
Well, no, you know, we didn't know enough to take care of him. That's what I would say. But we knew enough to be terrified. That's, that's where we were. So they just sent us home. And I was in tears and in denial, like, immediately all the heat, you know, all the different stages of grief, I guess, started to happen. And, you know, we were going back, so they sent us to an endocrinologist, the next morning. And we were just going back daily, like we didn't spend any time in the hospital. So we were just going back each day for education. And, you know, what do we do? And so like, I literally was going through all the stages, like, at that point, I was in denial, because I kept thinking, we're gonna go back today, and they're gonna tell us there was some kind of mistake, you know, and which is so ridiculous to think about now. But I really thought that, you know, we don't have a family history of any kind. And so I thought, this is probably just there's, there's probably a mistake. And I kept hoping for that it wasn't the case, of course.

Scott Benner 6:06
How was your husband dealing with it in that moment?

Malia 6:09
So it's really funny, and that this is the part where we always say, you know, it's, this is such a personal thing. But we are, like, we talk to a lot of, you know, type one families now. And I mentored families through JDRF. I did that for a little while. And we always were like, Okay, it's better if we're just honest about it, you know, how it affected us differently, right? Because I think it helps people feel better. You know, it's kind of painful to say that I was like, I went through two weeks where I just, I really was in a state of depression, you know, and it's hard to say, because you think I had another child that I needed to also just put it in gear for you? No. But he really did. He kicked it in gear. And he was like, and he's mister, like, let's fix it. There's a problem. Let's figure it out. So he was taking care of me too. So it was really probably a lot for him. Yeah. And those first few weeks,

Scott Benner 7:05
I hear that. Oh, my goodness. i I wonder. I wonder if, if everybody gets a chance to look back on it like that. And just take a minute to sort of diagnose what happened in the SEC, because it's very interesting. It's like, you're, you're feeling depressed, and you kind of probably turtled up a little bit. And then he looks up, the kids got diabetes, there's another kid, and you're like, I'm out. He's probably just like, oh my gosh, did you ever talk about it with him afterwards?

Malia 7:38
Oh, yes, we did. We've talked about it many times. I mean, he I can remember this, like it, let me you know, this was years ago, but I can remember sitting in the kitchen and him asking me when the last time I ate was. And then looking back, I thought this is really unfair to my husband, because he's, you know, learning a completely new, you know, this chronic disease that he's got to take care of, you know, that he's handling. And then another kid who's still very young, you know, she was young at the time, it's not like we can tell her just to hang tight, you know? And then me that he's having to ask if I ate today,

Scott Benner 8:10
how long? I guess you said a couple of weeks, but what do you think brought you around?

Malia 8:16
It's really just my personality to just kind of look at myself in the mirror and I'm like, Okay, you need to get it together today, you know, but my mother in law, I went over to her house and she came outside and met me on the porch and she said, hey, it's it's time to get it together. And it really kind of made me realize that you know, she she was right. When that's my personality, too, is is like Okay, it's time to step it in into gear and and deal with what we have to deal with.

Scott Benner 8:45
Malia I didn't like you for my my son and don't prove me right here. Okay, let's get going well, that's lovely a very she probably been through some things that she knows how it all works, you know, and and when you got to seal up a little bit and and even when you don't feel like Yeah,

Malia 9:04
yeah, I think she she also knows my personality and knew that that would that would be a good you know, like, Okay, your time is done.

Scott Benner 9:15
So was your husband Way ahead of you when you came online? Or um, weeks he probably didn't know very much I guess.

Malia 9:23
What Yeah, we I mean, it was no kidding. I mean, what I think probably for what anybody would say what you know, unless you're in the medical world maybe right you are have a history. You probably don't know a lot anyway. I mean, I was I was showing up to everything. I did feel like I was in a fog, you know, the entire time that I was learning things but no, I think I think I was staying focused on how to be a good caregiver. It's just Yeah, I just I just was pretty much denying that it was happening, but we we kind of had the reverse roles when My daughter was diagnosed because it was about 14 months later. And so he was at, he was at a work dinner. And we had taken them shopping. And so she's she kept doing the same thing. Like, I have to go the bathroom, I have to go bathroom. And it was very unusual for her. And so I just brought her home and used his meter and did a finger stick. And she was like, 500. And so I called him and I told him what was going on. And he said, That's impossible not to he didn't say that's impossible, but he was like, There's no way do it again. And I said, I've done it three times, you should you should just come home.

Scott Benner 10:34
Like I'm not coming home, actually, I'm leaving. You were with them when it happened. That's your problem. Now I gotta go. Oh, my gosh, I in that like shopping trip, when she's going to the bathroom or going to the bathroom right away. You're like, Oh, my God. Sophia has diabetes to do you think it right away?

Malia 10:57
It was my first thought to of course, test her. I mean, we left the store early. And, you know, I was like, I didn't want to be there doing it. And so we left because I was like, this is the first thing I'm gonna do. But I'm gonna be honest with you. When I saw that number pop on the meter. I thought, no way. There's got to be something on our hands. You know, like, I may not make it. But I just I just I thought there there can't be this can't be happening.

Scott Benner 11:22
No, no, it seems impossible to me. I mean, I don't even know what to relate it to. Like you, you. You. I don't know. You get a scratcher with your coffee and you win in the next week. It happens again. And you're like, Get out of here. Like, this stuff doesn't happen twice the people. It just Oh, and so close together to Yes. timewise. Yeah. Oh, my God,

Malia 11:43
we were super shocked.

Scott Benner 11:45
What happened? Where did you go through similar situations? The second time? Like, was he like, Don't worry, it's fine. Or did it turn into like, he was like, I'm out of this is killing me. And you were like, Don't worry, I have it like,

Malia 11:58
yeah, so we did we did. We had the reverse roles this time around. So we talked about this later, much later, right? Because, you know, sometimes when you're in the moment of drowning, that's all you're doing is drowning, you know, you're not really focusing on anything else. But I did have kind of the reverse on that one. So I was like, We can do this. It's you know, we know what we're doing. Right? Like, we know we're doing we're fine. You know, let's just move on. Not fine. But it was still certainly a sting. But and he did too. I mean, he's he sees problems ahead. And it's like, let's just fix it. But about a year after her diagnosis, we realized that we hadn't done much other than talk about diabetes. We hadn't gone on a date with each other. We you know, we were just like, what are we doing?

Scott Benner 12:43
Yeah, what's constant? It really is. Did the did Wyatt have any technology by them was using a pump or CGM or anything? By the time Sophie was diagnosed?

Malia 12:54
No, no. And so I, I don't, I never want to make it sound like I. Here's how I'll put it. We the endocrinologist that we were sent to was not very progressive. And remember, that was several years ago, too. But the CGM was there. The pump was there. And we were not doing any of that. So I would ask her about it constantly. And she would say, Well, you know, you still have to do finger sticks. You know, you were calibrating twice a day, I think, at that time. And I said, Yeah, I know. But that's better than, you know, 10 or 12. And I wasn't sleeping. I wasn't, you know, I just my health was probably going to if I kept that up, it was going to kill me and musk about all those things, and we weren't getting it. So let me jump into

Scott Benner 13:42
that. Did that. No have diabetes?

Malia 13:46
No.

Scott Benner 13:47
Interesting. Because you have to fingerstick anyway, back when you had to calibrate your CGM a couple of times a day. That's such a, like an old head type one answer about that. Because yeah, I can see that, you know, and so because I think, you know, based on conversations I've had, my expectation is, is that back then when CGM is required a couple of calibrations a day, people who are testing all the time anyway, were like, well, listen, if it's not going to stop me from testing, then I don't care. I think they saw it as a, like a blood glucose meter replacement. And they didn't. They weren't imagining all the benefits of seeing the speed and direction of the blood sugar at that time. So that was a really common answer. But guess what made me ask so Okay, so you're I'm sorry, so you're not sleeping? Things are going downhill quickly. And won't give you anything to help. When do you think? Well, let me ask you this. Did did the kids have I'm assuming they did. But how did they have different reactions? What sticks out in your head about why it's reaction at five years old versus Sophie's reaction? Eight years old.

Malia 14:55
So he doesn't I mean this even though he was five, this is the only life he He remembers, he doesn't think about life before diabetes and five he was he did I tell you, I'm thinking back on some of the things that he said to me at five years old, and I'll never forget them, it broke my heart. You know, we did adjust his diet immediately. And we, you know, we did all these things. And of course, he's doing all these fingers sticks a day, and his fingers hurt. And I can remember him at five. And of course, he just, you know, it looks just like a baby still had all the, you know, big cheeks and, and I can remember him waking up in the middle of the night and his stomach was upset. So he's like, you know, sitting in the bathroom, and I'm sitting there with him on the floor. And he says, mommy, my fingers hurt. And I have his fingers, his hands wrapped up in a wet washcloth while he's in the bathroom with a stomach ache. And he just looked at me and said, Well, when is this going to end? And that was heartbreaking. Yeah. She's gonna make me cry. Yeah, it was it was it and he would try to put it with an age, you know, he would say, well, when I'm your age, or when I'm popples age. So it was it was hard. He got past it, you know, pretty quickly. For her. She just when she saw that number on the meter, she just immediately bawled. She knew what it meant.

Scott Benner 16:15
Yeah, way different context at that point. She's seen him live with it for what do you say 16 months?

Malia 16:22
About 14 months?

Scott Benner 16:23
14, excuse me 14 months at that point. So she saw the shots and the testing and low blood sugars and you looking frazzled from a distance and all that stuff. And then it was on her tail. Wow. Yeah, yeah.

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Malia 19:14
Good they're good we're in the teenage years and you know I might could use your advice

Scott Benner 19:24
nothing goes right for me either but go ahead what do you got?

Malia 19:28
She does pretty good in the sense of she's neither of them are rebellious about it. I mean, at this point knock on wood they're not like just angry about it. There's there's none none of that. They have not hit the like I don't want to tell anybody or you know just none of that. But to be honest with you and we, you know my husband, I just say it like our son he's his agency was not great last time and we were very upset like he and I were just because we think about long term. And he's there routine and he's just live in a day, you know, day to day. And to be honest with you, a lot of his is just like, oh, I ate and I forgot to Bolus for any of the food that I just ate. And so then we're just fighting the highs and trying to attack those. And so we just, we bet we've battled that for about a year with him. Okay.

Scott Benner 20:20
And he's. So what happens there? Does, I mean, you obviously you sit and you explain it to him, even though you're like, I know, he knows this. But let me just say it again. And then he just doesn't do it. So is it willful? Is it? He's busy? What do you think you have any thoughts about that?

Malia 20:42
I think he's just kind of being lazy about it, you know? Yeah, he's just busy. He just doesn't want to take the time to do it. And I think a lot of 13 year old, so So you know, I'm dealing with two type ones. So it's really funny looking, looking at that, because so many families that I know, every family that I know, is just one and so you're trying to take their personality, and work with that, you know, like knowing what you know about their personality? How can I make this make sense to them? Or make them want to do it? Yeah. And I'm having to battle two different, very different personalities. So I think that you know, my husband, we have to be kind of delicate about how we approach each kid with it. You know, like, how do we make this make sense, and not terrify them? But you know, I think maybe we even use that tactic at some point.

Scott Benner 21:33
I think there's that saying, that's escaping me right now. But the sentiment of it is, as a parent, if you do everything that you say, as well as you can. And even let's just say you do it really well, you do it right. They'll just be something else later that they're like, oh, but you didn't do this. So it feels like a I mean, it's thankless the right word being someone's parents. Maybe it's true. And you just can't, no matter what, I think people go through stages. And I don't know that you can stop them from doing it. I was, I was saying this to Kelly, I think recently, where I see if I can put my thoughts together around this. I see people's happened to us. And I've seen it happen to other people all the time, right? Your kids are diagnosed with diabetes. It's a good example. Because well, you know, the theme of the podcast. But this happens with other stuff. So you get you get diagnosed with diabetes. And your first thought is, I'm going to create a life for my kid that is normal, like, I'm going to shoot for normal. And that's not really. I mean, I don't want to be a bummer Billy. But that's that's hard to get hit. You know, II mean, less sure, absolutely normal you can get, you can hit it in places, like Oh, my kid doesn't think about it very often, which is great, you know, hits them once in a while, but not every day. Or, you know, they, for the most part, take care of themselves and don't ignore things. But like, you know, Arden has been on the podcast, you heard her like, there's things she doesn't do that she's supposed to do that I make up for Kelly makes up for? You know, you say it doesn't affect the other person, the other kid, but it does. Look, there's no way around it. You know, I think I'm a person, for example, who has split their time between their two children as well as possible, and I'm sure that didn't make I'm sure it didn't do what I thought it was gonna do. Right? Like, because no matter what Arden looks like, she's getting more attention no matter what. And so this normal, or this perfection that everybody's shooting for, I don't think it exists. And I actually don't think it would have existed without diabetes either. In our example, I just think I just think that diabetes speeds it up so quickly. Like you have something to blame. You don't mean like you have context, all of a sudden, like, you know, I don't know, it's anything, gaining weight, getting sick. It happens so slowly, you don't notice it happening. And so it can kind of overtake you bit by bit. But when diabetes comes it comes in a wash, and you can ignore that this seems like the reason why everything is the way it is. So I'm gonna guess that without diabetes, why it would just not be doing something else he's supposed to be doing what he's there, of course, probably isn't doing that thing either, by the way, whatever it is, but then we then we point it back at the diabetes, and we're like, we'll see if they didn't have to go through this, then this wouldn't be happening and I wouldn't be upset about it. And you know, but I think the real I think the real end of the story is what you said earlier, which is my husband and I are upset when he doesn't follow us because we think about long term issues. That's really what we're all worried about. You know what I mean? low blood sugars today long term issues later. And then how do you? How do you, as a parent, gracefully manipulate the way people are so that they're more on their side of themselves succeeding and less on the side of themselves failing? And I don't know how to do that. Like, I don't know, you know what I mean?

Malia 25:25
I keep thinking, you know, especially listening to this podcast, and you know, I listen to people who've been on the podcast before, who are 30 years in, you know, as adults, I guess, that say, oh, yeah, I was there. And it just took growing up. It just took me some time. And it's sort of like, you know, this is the way I think of it. It doesn't make it easier in the moment, but I think about, you know, let's just say, like an addict, or anything, really, it's just like, I had to, I had to be there, you know, 10, people who loved me could be standing over me saying, this is the best thing for you. But until I was ready to do it, it wasn't gonna happen.

Scott Benner 26:03
Talk about how frustrating that is.

Malia 26:05
It's very frustrating. But of course, as with diabetes, what we do is we, of course, fill in the gaps, like you said, But, and I, I don't want to say this to my kids, that's exhausting. As for a parent, you know, to do you know, and you're doing full time jobs and, you know, taking care of the other child and running them to practices and doing all the things and so my husband, I say to them all the time, if we could just get a little help, that would be great.

Scott Benner 26:32
Yeah. Oh, wait, wait until they're like, you know, 10 years older, 20 years older, and you having a thoughtful conversation one day, and you're thinking, Oh, it all worked out, like the kids blood sugars are still pretty good as adults, and they seem like they're doing okay, and they turn to you and say, you know, you didn't do enough? Here's where you let me down. Like, yeah, I'll tell you, of all the things. I think of all the things that aren't fair. And of course, that list is very long, but, but one of them is. So it's so frustrating to be there. And be willing, and not just be willing, but be excited to help somebody and have them just completely ignore it. Because they don't have the same perspective as you do. So everything you say to them seems ridiculous. Hence the old like, you know, you'll see one day or you know, what a mom say to daughters, like, I hope you have one just like you or two sons, like, you know, like, you know, so you'll learn, and that one day, I'm just staying alive long enough for you to come find me and apologize. Like, how the hell is that the cycle? You know what I mean? But it's worldwide? And it's, you know, it's? I don't know, it's crazy. It

Malia 27:44
is? It is? I do see, I do I try to find the silver lining and everything. It doesn't always work. But I do see, especially with Wyatt, that he's more empathetic with people. So, you know, and my husband, I've said that we thought, you know, this is something this is actually a gift maybe that he got from that, like he does recognize probably over you know, when most kids wouldn't? Somebody's in a tough situation. So I don't know if that's because of the of what all he's been through. But but there is that Malia

Scott Benner 28:17
that the testosterone is going to hit him pretty hard. Just gonna start stepping over babies to get the video games. Like, I don't care about anything. I don't know. I it's, it's, it's an I see why. You know what, this is what you know, it makes sense. Why sex feels so good. Because if it didn't, why would anyone make a baby? The only it's the trek to get you to do it again. It is the trick, you're right. That's the thing. That's true, you're being tricked by your genitals Moya into making a little person who will not listen to anything that you've learned. And, and when you're young and a parent, you're like, you know how it goes, right? Like, we all think that our parents were terrible. And we figured something out. And I think for the most part, the part of that that's true is that your, your parents start somewhere, they ascend as far as they can. And then you based on what you've learned what you've seen, try to ascend a little farther right in understanding and knowledge or whatever. And you know, how you love whatever, you ascend a little farther. And then you're like, I didn't I want I'm the best have ever been like I saw my grandmother. She didn't give a care about anybody else. My mom and dad, I'm clearly better than them. Obviously, you know, they didn't try. I'm trying you know, all the stuff that you like you fill your head with when you're young. And then you lay it out for your kid and you're just like, hey, here it is like you're lucky because I've called the genius of the world. It's all right here for you. And they're like, you don't know what you're talking about. You're old and you're like, yes. Oh yeah, we get that. Okay, great. And and you just realized, like, this is the cycle, but there's no payoff.

Malia 30:07
There's no, there's not.

Scott Benner 30:10
There's literally no payoff. I assume, I don't mean to make light of this, and I'm not, but this is what rolls in the back of my head, I figure that I will get everybody somewhere comfortable. And I'll take one breath and start thinking about what I'm going to do for myself. And like, a mountain is going to fall on me. I know, right? And I'm just gonna be like, oh, and I'm gonna have enough time to look up and go, Oh, look, landslide. Okay, and then it's gonna be over, we're, we're, I'm gonna, like, get to that point, and my body is gonna break on me. And I'm just going to be stuck in a chair going, this is what I did. This is what I did my legs, my pay off. So the point is, for me, then we're gonna find out what the point is from you, is I just treat life in this regard. I mean, almost the way I treat diabetes, or the podcast or anything, right, like I put my best into it. And I hope that it pays back. And if it doesn't, at least, I didn't waste my time. I did my part is the way I ended up feeling about it. And, you know, I try to listen to the people who listen to the podcast, see what they need, I listen to my kids, I think I'm doing what they need. But the truth is, is that no matter what I do, someone's going to be disappointed. And you're just not going to. I don't know, this is such a bummer. Malia Why did you come on and make me feel like a bummer?

Malia 31:40
I'm sorry,

Scott Benner 31:41
here, here's the message, you can't win give up. No. But that's not true, though. Like, because it's bigger picture than that. Because your kid is going to ascend a little above you. And it's going to keep happening. You have to care about generations that you're not going to meet, to be sure to be a good parent. Really?

Malia 32:03
Do you know our motto in this home? Like we talked because you know, as you have teenagers, right? So you just constantly feel like you're just like, do this do that? Do? Did you do this? Did you do that? And so you know, when they look at you with that kind of crazy look. And I said, What have I always said to you? Like who do I want you to be and they're like, you just want to raise a good human being. So I'm like, Look, that's my, that's just my total end goal. I just want to raise a good person. You know, pass that I'm gonna fail at some a lot of things. Yep.

Scott Benner 32:35
This is it. And it's not even failure, by the way. I mean, I don't listen, you guys know me pretty well, for most of the podcasts, I put a ton of effort into my family. And still like, it's not like, it's not like when I get done here. The house turns black and white. It's like, Leave It to Beaver. You know what I mean? Like every, I have all the same problems everybody else has? Sure, you know, and the only thing that I can model for people listening is do the right thing. Be consistent about it. Do it for the right reasons. And if you're lucky, things will break your way sometimes. Like, I don't know, like, if you're looking for perfection. I certainly don't have the answer to that. But nobody else does either.

Malia 33:18
Now, of course not. Yeah, I gave up on that a long time ago for you.

Scott Benner 33:23
That's perfect. Let's not let go the whole way. You don't I mean, I don't want you mainlining during the day and stuff like that. But but you almost it's interesting, isn't it? Like because you can almost see how it happens to people. Like Like, like big addictions and escapism and things like that, like, you see why? I mean, I don't know, like, I feel okay today, but I don't know how I'll feel next week or what's gonna happen or, you know, when I'm gonna fall apart if I'm gonna fall apart if I'm not, I mean, artists budget, we got low overnight last night. I don't even know how Dexcom alarmed, got right up, went into her. Boom, boom, boom, she's fine. In a couple of minutes. We're back at it. But we're six weeks away from her going to college. Actually, I'm looking at my calendar. We're five weeks away from her going to college. Well, so what am I going to do when she gets low five weeks from now? Because she will write a call on the phone. Like, you know, she's going to be 13 hours by car away with you know, a few girls she met online so far. Wow. So wow, that's the thing that's gonna break me Malia.

Malia 34:41
I met I met a family through JDRF. And it's kind of funny how we got connected with JDRF. But I met a family and he his daughter was away at college. And I said, Oh, you know, I mean, our kids were, you know, six and seven maybe at that time and he said, You know, I was always very nervous. About her going to college. And so he said this was, you know, we had a plan. And I said, Oh, what what was your plan? And he said, Well, I told her that if she got low and the middle of the night, and I called her three times in a row, and she didn't answer, my next call was going to be the to the police department, and they were going to best her door down. He was like, we have an understanding. I was like, oh, that's your plan.

Scott Benner 35:21
We'll see. That's a nice plan, except I walk into Arden's room, and I was like art in Arlen, Arlen, art and art. She doesn't hear like She's asleep. Yeah. So I don't know what to do. And to be perfectly honest with you, I look back. I didn't hear it for the first 15 minutes, like I looked at when she got low. And when the alarm started, and it took me 15 minutes to wake up. And my blood sugar wasn't low. I'm just older than usual. Yeah,

Malia 35:47
yeah. The same thing happened to me last night. Why it dropped to 50. And the alarm had been going off. And I didn't wake up until you know it did until I did. And then I thought, how long did I lay here before?

Scott Benner 36:02
All this happened? Do you ever have a low blood sugar for a kid and fix it? And then think to yourself? Common sense tells me to look at the other one. But I'm just gonna hope and then crawl back in bed and somebody else gets low or high or something like that?

Malia 36:17
Oh, yes. And I I cannot tell you how many times that I have fixed a low, got back into bed and I just exhausted and I like it's one of those feelings where I think as soon as I hit this bed, I'm gonna fall back to sleep. But then I think to myself, is that going to work? Is that just gonna work? Or hey, I didn't look at you know Sophie's number. And so I lay there for a second. And then I think to myself, you have to look. Or you have to stay up and wait 15 minutes. I did that. So it happens to me all the time. Yeah,

Scott Benner 36:48
I did it last night because the juice caught it. But I was like are, it's called it'll be okay. And I went back to bed. And like two minutes later, she texted she's like, I need something to eat. I can feel this. And I was like, okay, so I came into her room. And I was and she's like, I think I gave her three gummy bears and a cookie. And she's eating the cookie. She goes, this is the best cookie I've ever had in my life. She wasn't kidding. I said, Well, I'm glad. And then I just like the way Arden's room is set up. I'm now standing there. I have a T shirt on. I'm in my underwear, the air conditioner, and I don't want to complain about having air conditioning, but was blowing at me. There was nowhere for me to go. And I thought, Well, I'm not going to leave until this thing registers to two checks. So for 10 minutes at 330 in the morning, I was scrolling the news, freezing while and rubbing Arden's back at the same time. She's like, hey, rub my back while you're here. I was like, Okay, great. So I'm doing all that, by the way. This is long past me remembering how good it felt having sex to make Arden. So that's why that's out the window. Bayway gone now. And like so there's nothing to lean on, really, except I like her. You know what I mean? So I'm like, okay, and I get back in bed. And Kelly says, How are we going to send her to college? I was like, oh, that's usually my line. Like, that's usually something I say after stuff like this. You know, I was like, Oh, God, now she's thinking about it. Great. Like, okay, so I don't know what the answer is gonna be. I have no idea. I can tell you. I looked at the low blood sugar. I can't believe she got low. So I mean, it was three hours after a Bolus. And I was just like, a neat, it was one of those things that I would have bet against. And then there it was, anyway. So

Malia 38:44
I don't I have. So I have a question for you just in thinking about all of that. When she goes away? Do you think that you will be less bold with intellect during those nighttime hours, you would make some adjustments just to make you guys feel better see how it goes? Or?

Scott Benner 39:02
Listen, I'm very close to telling her that she can't eat after 9pm Like, like a freaking Gremlin or whatever that movie was? Yes. I know. It's midnight, but I'm going to change it for my for my movie. can't feed it after nine o'clock. So let me I mean, really, that's this is the thing you're guarding against. Right? It's like a low when you're really asleep. So she came home last night from a from a what? It was a like a graduation party. These kids are just all collecting money off of each other at this point because he graduated from high school. She comes home there's a little bit of swimming but not a lot. Her blood sugar was fine throughout the evening. I thought she did a good job with the Bolus she made while she was at the party. She gets home. I don't know what it's like 11 o'clock. Her blood sugar is a little high. It's like 145 or something like that. She's like, Hey, I'm gonna Pre-Bolus this and have some chocolate covered pretzels. I was like, okay, so she did She Bolus she got in the shower. scow, the shower, she created a fall like she wanted, she ate her pretzels she leveled right out. And three hours later, her blood sugar started falling. So yeah, I don't know. I mean, I guess I could move with her but that seems cliched.

Malia 40:21
Well, I think I've heard you say before, you know, all everybody's done this thing before, I think we've struggled with school. Like, you know, things are going at school, and I listened to one where there was a mom, teacher on there, and then you made the comment, you know, hey, everybody's done this before. We're all gonna be good, right?

Scott Benner 40:38
Yeah, well, that's just me being positive and doing the right thing. I mean, you guys like you hear the podcast? Right? Like, you know, I'm really good. Sometimes, like, look, just hope for the best. Point yourself in the good direction. Hope for your bet. I mean, look, I don't know what to say. Most days, most hours. Even most nights, it's not a problem. And then until it is, have your kids ever had seizures? No. Have you ever come close? No. Never never been in a situation like, Oh, this is tilt in the wrong way? No. And but they're a one Caesar hire. You were saying?

Malia 41:13
They really are. Yeah, we've got to get them down.

Scott Benner 41:16
Okay, so you're just you're, you know, you're trading the one thing for the other thing? We are? Yeah, sure. Great. Say I don't I this is the episode where I'd come out and tell everybody, I don't know. Just just give up? No. No, I mean, I don't know. We're trying to be honest. Right? So absolutely. Yeah, it's, um, I mean, you do your best. And it starts with understanding diabetes, that it starts with understanding how insulin works. So you can make the best decisions you can. And there from there, you, you march on forward and hope the variables don't conspire against you. That's pretty much it. And if they do you stand up, pull out the tools that I gave you and beat them back and get level and start over again, like, it's, it's not fair. It's just what it is. So, but if it wasn't this, it'd be something else. So there's That's right.

Malia 42:15
That is right. I do think it's funny, though, when you wouldn't, you know, and listening to this, these podcasts, and then us having this conversation, you know, even our grandparents who want to be so involved with their care, and obviously want to be tremendous, great caregivers, really don't even have an understanding of what this life is like, it's just, you know, and they want to they want to, and they still can't, they still don't really even fully understand it. So I think that it's, there's just so much involved. And I think that most people would not know that.

Scott Benner 42:50
Oh, down the little things like I don't drink to begin with. But if I did, how would I do that? Like, how would I be like, how could I, I don't know, have a couple of at the end of the night and fall asleep in a way that you're not going to wake up till the morning? I can't, I can't do that. Can I? You know, like, I mean, how do you? I mean, how do you do any of it? Like it's and they would never one generation back, they would never think of that. They would have no reason to. And if they had diabetes, that generation back even if you had diabetes as a kid, well, yeah. How old are you? I'm 41. Okay, even if you had diabetes as a kid, you know, it would have been a different situation. Of course. Yeah. So they're mostly. Now they still wouldn't know. I mean, they'd have that's unfair, I guess they would have more of an idea. They'd see loads and things like that. But not those kinds of like crazy. You used to be 110 20 minutes ago, and now you're 50 lows, you know, like that insulin for the most part, I guess, unless you forgot to eat didn't work that way. But I'm just saying, but it was a different world. And I take your point that there's no way they would know. So well. Why did you want to come on the podcast? It wasn't the bummed me out. I know that. Mission accomplished. Anyway, Malia so here's what you wrote ready? preteen teen struggles with type one, issues at school and struggles for yourself as a parent. All right,

Malia 44:18
that does sound like a bummer. All of that sounds very, very.

Scott Benner 44:21
You didn't write anything in here about the flowers blooming or me staying alive to see the next you know, Marvel movie or anything like that. There's all this is all just bummer. So I mean, I think we've gone through with your son, he doesn't Bolus that's great. What is your daughter do? That's a struggle.

Malia 44:39
Um, she does pretty good with so she she has a little bit more of the thinking of long term. So she she does try to make sure she'll tell us hey, I Pre-Bolus this is what I'm doing. She on the other hand is just super forgetful. So we might, you know, make it out the door and we're like, Hey, do you have everything that you need, oh, yes, I do, I do. And then we get to a restaurant or whatever. And we have to turn around and come back home. We've done that many times. So, but she really does think about more of the long term. So their personalities are super different. And in that regard, he's just living in the moment. And she's a planner for the future, but she forgets in the moment.

Scott Benner 45:22
Okay. So, and why he doesn't think in the, well, why he doesn't think about the moment either.

Malia 45:30
And then he looks like he kind of does like, it's funny, because he doesn't think long term, right? Also, I guess in the moment if he's not Pre-Bolus like that, like when we get to a restaurant and she's forgotten her stuff. He's like, looking at her like, are you serious? Oh, my God, almost like he's so perfect. And so we look at each other, my husband and I do and we're like, okay, don't forget you made this mistake yesterday.

Scott Benner 45:49
Malia I don't listen. To sound harsh. If my children ever hear this. I apologize. But what are you hearing when you're talking? Go ahead, say it shouldn't have kids. And not because of the diabetes, just all of it.

Malia 46:08
My husband that we were, we went to the lake last weekend and we're sitting on the boat, just you know, enjoying the day and

Unknown Speaker 46:14
kids are like on board. Okay, hold on.

Malia 46:17
Whatever they're saying, and I look at him and I was like, This was your idea. He was like, This was your idea.

Scott Benner 46:22
I liked it. They're bored. Right? It's amazing. My I don't know about your summer vacation. Like I'm, you know, about 10 years older than you. I'd wake up in the morning, eat a bowl of cereal, watch television, walk outside, stare at my friends, walk back inside. Have a sandwich. It wasn't good. In case you're wondering. It was like fluffy white bread with like two pieces of pretend meat in between it and some mustard. And then I stare at my friends stare at the TV, eat some crappy food. get yelled at Go back to bed. Your kids are at a lake going. What's all this?

Malia 46:58
Yeah, yeah, that's what we tell them. And you know what, though? Like when we did that, like we we entertained ourselves in the summer. I don't know that we did anything more than that. You know, but I was good with that.

Scott Benner 47:09
Malia One summer I taught myself to shoplift, snowboard. I didn't even once I was just like, I gotta I need something to do. So that's amazing. You think you know what, I think that? I can't get arrested anymore. Right? It's a long time ago.

Malia 47:25
I don't think so. There's gonna be a time limit on that. Right.

Scott Benner 47:28
Let's go with that. So there was this. Do you remember at one point, like Walkmans, obviously, but do you remember why they slipped TVs in them? Now, at one point, you could get this little handheld thing that would had like a TV tuner and it had a little screen it was like two inches by one inch and you could watch TV on it. You don't remember that? I live now that was out of a Kmart. I don't know how old I was. It was my shining moment of shoplifting. I don't think I ever did it again after that, that I can recall. And I don't remember now

Malia 48:04
all the cameras are closing. That's probably why

Scott Benner 48:07
you think it's me. Do you want to know what tactic I used? Yeah, do I use I walked out of there like I own the place. Like I was doing what I was supposed to be doing. So I just did it in full field, and just did it at work nowadays. I'm sure there's cameras everywhere and probably not gonna get away with that. But back then, I just picked it up. And I was like, I'm gonna leave with this. And that was my summer I spent my whole summer watching my stolen television. And I felt really bad about it.

Malia 48:43
I was gonna ask you how you felt afterwards? Yeah,

Scott Benner 48:45
horrible. Actually. Thank you. It stuck with me for a really long time. I haven't stolen anything since then. But uh, yeah, I just I took it back to my then you couldn't show with anybody and I had to hide it.

Malia 48:59
You know, it wasn't worth it. It just

Scott Benner 49:01
It sucked. But it eat up that summer. You had your your kids that that like piss me off, just in case you're wondering.

Malia 49:07
Yeah, yeah, right. Exactly.

Scott Benner 49:11
Like, why do you like mash the television show? Mash? And I'm like, boy, let me tell you about the three months I spent in a room watching it because that was my whole life. Because it was on reruns. And we didn't go on vacations or have you know, money. So, so I just sat there watching mash in my formative years. Oh, my gosh, no, I might listen, my kids lives are like you should see the stuff arriving here to take the school with Arden. To the point where I'm like, How are we going to get this stuff to where we're going even? I think we only own two cars. You know, drop ship it from a parachute. Like, what's the plan here? Exactly. She needs that. I was like I'm perfectly sure she doesn't need that. I don't even know what that is. Are you swimming with a kid?

Malia 50:00
They haven't so good.

Scott Benner 50:01
Oh my gosh, she's like, Hey, I got wallpaper from my dorm room. I'm like, I'm sure you didn't like that seems wrong. No, it sticks up and it pulls right down again, let's just for the ball on the back of my bed. And I looked at Kelly, I'm like, what, what are we doing? I was like, I was like, we should be forget all this stuff, we should be fashioning a pot and pans system that is connected to each other by wire. And when her phone vibrates, it makes the pots client like, that's what we should be focusing on right now. But instead, wallpaper that you can take back down again. So anyway, I hate your kids now for complaining about the list.

Malia 50:37
I know. I know.

Scott Benner 50:39
Anyway, so Okay, so regular teen stuff, but it just applies to diabetes. There's nothing special here. Right? You're not having any new experiences that you wouldn't have had with, with regular teens. It's just that they're, they have diabetes. So it comes? Yeah. And

Malia 50:57
I mean, I felt like we were kind of prepped for that, you know, early, early on in our diagnosis, you know, we were, we were told, hey, the, you know, the teen years do get difficult. I will tell you, the one thing I wish I had we had been prepped more for was all of the emotional side of it. We just had to figure that out on our own. So well. I guess the diabetes fatigue, you know, that hits everybody, even parents, and, you know, when you're first diagnosed, you're just learning how to keep your kid alive, you know, and that's all you're focused on. And there's not like your doctor can give you all of the time in the world, right? Like they've all these other patients. So they just need to keep you to, you know, teach you to keep them alive. Right? And then, you know, years into it, there's the emotional side of it. The the diabetes, fatigue is so real. And, you know, and even as parents, you know, we hit it. And I think sometimes maybe if we had known that was gonna hit I don't maybe that's not true. But if we had known that, we would have almost attacked it a little bit better.

Scott Benner 52:09
Well, the fifth, and you're just talking about, like, mentally not being prepared for it and physically being exhausted. Just the

Malia 52:14
mental like, wait, I think that you know, it, the toll that it pulls you down to

Scott Benner 52:20
Yeah. I speaking of jealousy, when I see people who just kind of raised their kids, like, it's all like, kind of laissez faire, like, Oh, it'll be fine. Yeah, I know, we found them in the park drunk, it'll be all right. Like, like that kind of stuff. They just like, let things go. And you realize how much of life doesn't need to be addressed. If it's not going to give you a really low blood sugar and kill you, or give you a really high blood sugar, and like, get to know, you know, cause long term complications. So the other stuff is like, you know, you can skip things sometimes, like, you know, sure, in a perfect situation, you'd be there to kind of parent through everything. But in a normal situation, there's stuff you can ignore. Like, when you're when you're too tired, or when you've just, like, come out of a room having an argument with your spouse that left you thinking like, Why in the hell am I with this person? Like, like, you know, like, instead of having to come out the door, and go, Oh, did you Pre-Bolus With what you want to say is, I'm thinking of, I'm thinking of leaving. And it's just because 20 years ago, you know, like, I mean, when you're having big, existential adult problems, and your kids blood sugar's low, you just throw those things away, and you gotta take care of the low blood sugar. Right? You don't you don't have time to go through your thoughts. Not that you're going to leave, but you don't have time to go through your thoughts you don't have time to, to tend to yourself, or the the problems you might be having, you just keep pushing them off and pushing them off. And you know, what do you think you think like, oh, one day, they'll get it old enough? They'll take care of it themselves? And then yeah, right. And then Billy, you'll be 65. So

Malia 54:00
well, you know, speaking of that, and I, I know it had to have been on one of the early like, forever ago podcasts that I listened to. But I think to knowing in this episode talking about no and some of the mental stress, right like is, is knowing the toll that it's going to take on your marriage. I mean, it's it's crazy to think back on some of our argument every every study argues right, but like to think about some of our arguments, and they either started because of our stress from you know, diabetes, or we let it go to a place where it shouldn't we shouldn't have let it go over over their blood sugars.

Scott Benner 54:35
All of my arguments about my kids.

Malia 54:39
And yeah, it's crazy.

Scott Benner 54:41
For us. It's because we both care about them so much.

Malia 54:44
Of course, of course, but it doesn't feel like that in the moment. No, if

Scott Benner 54:47
one of us was just a Slack, slacker as a parent, I think it'd be fun. I think we'd actually be better off because then one person would just defer to the other person. And instead, we both have pretty strong views about things and we're thing Thinking about them constantly and trying to like, you know, I don't know, like maybe some of that 70s thing where I looked up and realized, like, my mom doesn't even know I'm alive. Like, maybe I maybe I would be nice if I had some of that mixed into me, but I don't. So, you know, you're, you're busy trying to help or advise or handle or whatever. And you're doing it for a person who, generally speaking does not care. Like they care, but they don't really care. You know what I mean? They're like, Oh, it's nice. My mom seems to like me, but they don't see the big picture. Because how could they? And then, you know, you get together privately, like, I mean, the last thing that my wife and I argued about, it wasn't about what was good for the kids. I don't even know what it is. I couldn't even begin to tell you. Right. Maybe we would if we had time. Exactly. I don't know.

Malia 55:49
Exactly.

Scott Benner 55:50
So I'm sorry. You were making a point? I just, I walked all over you. And I don't know what your point was.

Malia 55:55
No, no, I just I just think about that. We Well, my husband, I think about that often, just the and so like after Sophie was diagnosed, we kind of we had to wreck it. We went on for several months where we just probably were like, just living in this. Everything diabetes world. I don't know that we talked about anything outside of the kids blood sugars for several months until we woke up one day. And we were like, we can't we can't go on like this.

Scott Benner 56:19
Now it's depressing. It is it but you

Malia 56:23
know what, when we recognized it, and so like, I think I told you, I mentored a couple of families with JDRF. And I thought that was so important to talk about because, you know, you you, all of us can be just consumed in our kids, right? With everything, even if you don't live in the world of diabetes, but then you throw that in. And you got to remember to be good to each other to you know,

Scott Benner 56:46
ya know, even even if other people are consumed with their kids, but not at three in the morning, usually.

Malia 56:53
Yeah, of course not. Yeah, they actually sleep.

Scott Benner 56:55
Right. Like, I don't understand what your problem is like, Okay, I'm coming for you to this. Yeah, I rested. People make me upset. Like what? It was like they slept so damn, well, maybe problems.

Malia 57:09
I couldn't believe that. So like when we first got diagnosed, I think why we went probably a year, maybe a year and a half with no CGM. And I remember sitting on the couch one day, and so I would tell my husband about it. And we were so new. And we were just going on the advice of our Endo, right, we didn't really have any connections didn't have this podcast, I didn't have anything like that. And so I remember sitting on the couch, and I said, I really want to I really want to get this and he was like, well, but you know, they said it's not necessary for us to do right now. And I just started bawling, crying, and I said, I haven't slept in a year and a half. I haven't slept. And so of course, you know, think about that you would get up and you would do a finger stick. And if he was at, and I say he because we didn't have that diagnosis yet with Sophie. But like if if, if the blood sugar was okay, I had no idea which direction it was going to go. And so I would try to lay back down. And I'd think well, now what? Yeah, and so I was setting alarms, I think it was like every two hours. And I was just I just never slept most of

Scott Benner 58:11
the time when you got up and tested again. Were you happy that you did? Are you ever like, because it's funny, it doesn't matter? Like if they're low? It's not like you're like I was right. And if you don't I mean, you're just like, Okay, take care of it. And if they're steady, it's not like you go, Well, I guess I can go to sleep now. Because the next number doesn't tell you much more than the first one did it. Right. Exactly. It doesn't give you the relief of of I don't know, I guess some people are okay, like, can just let it go. But it sounds like you couldn't.

Malia 58:38
I couldn't. And I think a lot of that was because of just research I had done on my own because, you know, really in the beginning. We weren't told to even do nighttime finger sticks. I mean, that's just the truth. And we just were told to do for a day. And I couldn't make sense of that. Because I was like, if I'm not going eight or 10 hours during the day without doing it. Why would I do that at night. So I just couldn't do it. I couldn't let it go. And I just I never slept and I. After about a year and a half. I just I ended up begging for the CGM. And then we switched endocrinologist. And as soon as we were there, they said we should do this. And I was like, yes, thank you. We should and we should

Scott Benner 59:22
get that labia CGM. It's not even for the boy. It's for her give it to her.

Malia 59:26
She started it first. Sophie started it before he did actually.

Scott Benner 59:30
Well, yeah, yeah. I mean, I take your point about the other thing too. It's like I used to say, if it's important to know her blood sugar during the day because I don't want her to get low. Why isn't an important night? And nobody could ever answer the question. And I was like, Well, it seems like it is. It seems like the answer was well Scott because humans can't stay up for 24 hours a day. So you're gonna have to sleep.

Malia 59:54
Oh, I did i

Scott Benner 59:57
i was not really know I was good at it at one point. I I didn't have to go to sleep until like, I kept it going for a while. Like, I didn't have to go to sleep till to 230 in the morning, and I could still get up at 630 Like I was okay. And then one day, I don't know, if I hit a certain age, I don't know what happened. But I remember thinking, like, I can't do this anymore. Like, I just like, can't

Malia 1:00:23
swim long term I, you know, that's, that's kind of where I was, too. I did it for like, a year, year and a half, whatever that timeline was. And we, you know, our friends would say, I just I don't know how you do it. And I would my response was, you know, I guess my body's gotten used to this right. And so even now, almost nightly, I wake up at like, two, three, just I mean, you know, and I'll glance at my phone and I think it was, you know, the all those years that I set an alarm. I don't know if my body's used to it or not, but in the beginning, I was just exhausted, and then I got used to it.

Scott Benner 1:00:57
I know that is what you tell yourself. I'm used to it now.

Malia 1:01:00
Right? Yeah. Long term. That's probably not good for us. No,

Scott Benner 1:01:03
no, we'll be dead. Like that kids

Malia 1:01:07
will be super ungrateful.

Scott Benner 1:01:09
Oh, yeah. Forget the mountain falling on me. That'll be what happens. Like I'll hear like a you know, like a there's a little wind up kitchen timers. Like you don't even like the you used to have them on our stove. Does anybody remember these? The kitchen? Well, yeah, I thought you were like, I don't know what you're talking about. Oh,

Malia 1:01:25
no, no, I'm with you. So now, with the TV. You lost me on that one.

Scott Benner 1:01:30
Listen, you weren't technologically forward like I was. But I'm thinking now instead of like, everybody's okay. And everybody settled, and a mountain falls on me. I'm just gonna hear like that timer go off in my like, in my chest or something like you look at like thinking, like, Oh, good. I'm done. I, the truth is, is that I'm, I don't even know what to do. I brought this up on the show recently. But we, we Kelly has a like, I don't have a real job. But Kelly does, you know. So like we moved our 401k Like she'd had, she had like two of them from two companies that she'd worked out for a long time. So we put them together with a person who's managing it. And as the paperwork was being done, the guy says, So what do you want to do when you retire? And I thought, like, I don't know, I have no idea. I couldn't think of anything. I just couldn't think of anything. And I felt ridiculous. So I just I said something kind of flippant. And I was like, I'll get back to you. But I can't even think about myself long enough to imagine what I would do when I would be retired. Right? And that's terrible. You know, like, I just was like, I don't know. Like, will the kids need something? Cuz I could do that. You know? I remember I used to like things, but I don't know what they are.

Malia 1:02:57
Oh, I feel like I've dragged us down.

Scott Benner 1:02:59
You really? Did. He beat me up. This is this is your fault completely. So I stalked you a little on Facebook. So I know who you are now. Okay. All set.

Malia 1:03:12
I don't do a lot of Facebooking. But there's, there's some things there

Scott Benner 1:03:15
are pictures here. I can pull it together. I know what I'm looking at. You said you Vaughn, you've talked a couple of times about volunteering and mentoring people and stuff like that. How long were you able to do that before? You're like, why am I talking about diabetes in the five free seconds that I have?

Malia 1:03:31
Yeah. First of all, I will tell you that I think I mentioned that when I filled out all this stuff that you know, like when I would listen to your podcasts like I travel for work. I'm in the car all the time. And so I would listen to the podcast all the time. And I would feel like I was gaining this knowledge. And then at some point, I was like, I have to take a diabetes break.

Scott Benner 1:03:49
So I understand you're saying Go ahead.

Malia 1:03:51
It was kind of like that. When we we said we've been super involved with diabetes. My husband I have we've you know, helped to raise a lot of money. He's, he's actually currently the president of the Kentucky chapter. It's JDRF. And I served on the board and but we it was all by accident. At the time, I worked for my family's business and they would bring JDRF would bring for an outreach event. They bring kids out to my family's business, they have like a pumpkin patch. And so I had worked with that group for years with no connection. And I loved the guy that did the outreach. He was a type one himself. His mom was type one. I knew his story before we ever even you know, had any real life experience with diabetes. And he called me one day and said, Oh, we're you know, I just need to plan my fall event for all the kids to come out and so I'd like about started crying on the phone and I said well I've you know joined your group your family. And he was he's not with the organization anymore, but he was so great at just reaching out just a little here and there. Not an overwhelming amount but it's He, he got us involved with more of the outreach stuff, not really the fundraising. And then over time, about a year later, he said, You know, I think it would be we have this mentoring program, and we have families, we try to connect you with kids, you know, in around the same age. So I started doing that. And I did that for a couple of years. And I'm still, we're still very close with those families, you know, we still see him a couple times a year, and sometimes talk, you know, through text messages or whatever. But so I did that for a couple of years. And I will tell you that right now, where we are with that is we've given so much like we put on a walk, or we did a run, actually, for about eight years, at that same family business, and it was offered, you know, fundraising through JDRF. And we did that for years. And so now we've kind of reached the point where we're like, Okay, we're gonna let a younger family kind of take this over. So we did it for a while, and it can be, it's good. It's all for a great cause. But it can be really overwhelming.

Scott Benner 1:06:04
Yeah, I mean, you describe that you're already overwhelmed, you know? And then you take it on this thing, which is very kind, obviously, but I just thought, like, can't possibly do that forever, right?

Malia 1:06:15
No, no, you can't. And we had to say that sorry. It's actually was just this year that my husband sat down, and we said, Okay, we can't, we just can't keep this up. Like, it's just not good for us, you know, but it was really good in the moment, like, in all these years for the kids to see. You know, they know work that we're fighting for all of our kids probably know, that we're fighting for them, right. We're advocating for them doing all the things, but I think it was good for them to see. Not just with JDRF, but other things that my husband and I would do to involve ourselves and helping other people.

Scott Benner 1:06:50
I think that too. I'm waiting for it to pay me off.

Malia 1:06:55
Well, maybe it'll be paid off in the sense that our chips solid, and they'll do that, too.

Scott Benner 1:07:00
Well, listen, being serious. That's what I think it is. I think it's what I talked about earlier is that they'll, they'll sort of elevate above where I am. And that'll be the new crown zero, right? That'll be the new starting point. And then, you know, they'll do the same thing in the world, somehow, it doesn't mean they're gonna have kids or not have kids just there. They'll put that back in somehow, or they'll go live a happy life. There's part of me that, you know, it's funny, as much as I think like, I hope my kids have kids and like, keep this whole thing going. There's another part of me it's like, I maybe they should just stay single and just have fun. Like, some people have fun, right? Like, why why am I the building block person and other people are the rave people like that happen? You know, I'm saying? Well, you do. Yeah, you damn right? You do? Oh, I do. Why am I trying so hard? And there are other people who were out at? I don't know, just live in their best light field somewhere dancing in a circle on Molly. Like, how why is that happening? Like, how is it possible that I'm the one carrying the water? And they're the one drinking it? I don't know. I'm not bitter at all.

Malia 1:08:12
No, no, I'm good.

Scott Benner 1:08:16
I don't I don't know. You know, in my personality is not like that. Like, I wouldn't have been able to, like, as a young person, just be like, I'm just gonna be by myself and hanging out and I'll ride this thing to the end. I had an aunt and uncle they did it. They were married. They were like, We do not want kids. They did everything they wanted to do. And they still died.

mean, what's the saying? None of us are getting out of this alive. I think that's the one. You know. I don't know. If we helped anybody so far with this conversation? Where do you think we just bumped out a bunch of people whose kids just got diagnosed with it?

Malia 1:08:56
Now I'm really feeling bad about that.

Scott Benner 1:08:59
Listen, the truth is, you go put on another episode of the podcast where I'm also speaking honestly about things and I'll tell you that, you know, do I need to remind them here Malia, Arden, say one scene has been between five, two and six to for almost 10 years now. So you know, it's a there's a lot of good stuff that comes out of it too, about this just sort of setting a course and sticking to it and having long term perspective, not getting too bogged down moment to moment. But I don't know, listen, it might not surprise you. I record this podcast like almost every day. Every day isn't great for me. You might have caught me on one of those things. But I also think it's valuable to be honest with people like it's not you to Yeah, it this thing is, I mean, honestly, that's what you were talking about with mentoring people, right? You said you didn't know how to like, how do you do this? And then you decided to be honest with them. It's, you know, this isn't great.

Malia 1:10:00
Yeah, it's sort of like, you know, when we first had a baby, and you know, the first six weeks, we never slept. And so I, like my husband said to me, after, you know, I don't know, a few months, he said, Gosh, if somebody would have just told us in the beginning, hey, it gets better. Right? He's like, I feel like I would have gone through that first six weeks a little easier. And I looked at that, like, with mentoring families, I thought, you know, you can ask all the tough questions. And, you know, I'm gonna tell you, you might not sleep, some nights and all the things but it's not all doom and gloom. It really isn't. And, you know, we've, we've done okay,

Scott Benner 1:10:34
I believe everything I've ever said on the podcast, for the most part, if you bring me something crazy, I said back, I might say no to that, but but it is really, it's time and experience. And you just sort of figure out what to do. And you do it. And at the same time, you're people's kids are people. They're not like everybody's doing, everybody doesn't grow up to be the CEO of some big shiny company, like, right, like all of our kids aren't going to be professional musicians, or athletes, or whatever it is you're hoping for exactly. As a matter of fact, for most people, that's not going to happen. So it's not. I mean, it's fun to it's fun to expect it. But the truth is, you do your best, you learn things, it gets easier. And you know, when you're really making problems, you course, correct. Like when Malia didn't sleep for a while, she eventually said to herself, I, I need to stop doing this now. So that's it. That's the big stuff, right?

Malia 1:11:30
I don't that's the big stuff. Yeah. Yeah.

Scott Benner 1:11:34
Just Pre-Bolus For God's sake.

Malia 1:11:36
I know, I know. I'm really hoping we'll get there. And that's going to, but I think it's just going to take him deciding on his own, he's going to take more of a the initiative to be a good caregiver for himself.

Scott Benner 1:11:47
What happens if you, like, just climb up his butt? Don't make it happen? Does that get pushed back?

Malia 1:11:56
I think, you know, honestly, I think he would just rather us do it all the time. Have you? You know what I mean?

Scott Benner 1:12:02
Have you considered just taking it for a little while until they get to a different age?

Malia 1:12:07
You know, maybe that's what we should consider. But we were doing the we were doing the opposite. You know, he went into sixth grade last year, he's going into seventh grade this year. And so we were like, Okay, this is, when we were in elementary school, we had the most wonderful experience, you know, ever. And so we were always trying to prepare him for middle school where it would be a little different. And now Sophie is going to high school. So we're prepared. So there's all these different stages that we thought we were doing the right thing, you know, by just preparing them to be more responsible and more independent, which they are independent, but they're not right, because they're not doing the things that they should be doing. So I don't know, maybe that maybe that would be the better thing to do right now.

Scott Benner 1:12:49
Yeah, I don't know. Like, I swear to you. I don't know. I wish I did. Like, the way I think of it is that they're kids, and they're going to not be great at it. Right? So why don't I prop them up for a little bit and hope we can get to a place where they take over?

Malia 1:13:07
I thought they kind of both of them kind of butt heads with the school nurse this past year. And I thought this is this is good. I'm going to use this, you know, and so they didn't want to be pulled out of class, which I don't want them to do either. And that was another nightmare. But they would say, you know, this is just she's just constantly stay standing over me. And so I'm like, okay, yeah, hey, we can fix this. We can fix it. I've got a simple solution. Don't let your blood sugar get out of range Bolus for your food, and she will not come and find you.

Scott Benner 1:13:38
Yeah, that seems easy, doesn't it? And then did it happen? Yes. And

Malia 1:13:44
no. He would tell her especially why he would say I'm independent. You know, you don't have to do this. But then I would have to call her and say, Hey, his blood sugar is 300 What is going on?

Scott Benner 1:13:55
She's like, Hey, he's independent. Independently screwing this up, so let's get going. Yes, exactly.

Malia 1:14:02
That's what what happened, he would eat lunch and just be like, Oh, I didn't. I didn't Bolus I forgot to so

Scott Benner 1:14:09
it might be one of the most common answers from a kid. They're like, I've got this. And you're like, No, obviously you don't like, like, all of our, all of the things that we measure this scenario with? You have not scored high on you failed. Yes. And now you're gonna tell me I've got this. Like, I don't know what that even means. I think I think it means I'm going to ignore this and you should leave me alone. But you know, and I don't even mean just mean diabetes, like on anything, like cleaning the room or something and you're like, hey, I I'm having trouble walking in here. Like I've got it like, Okay,

Malia 1:14:52
what is the eye roll that they give to parents?

Scott Benner 1:14:55
What if you put that stuff in the closet, then I wouldn't be tripping over it. And then If not for nothing, you'd have it. So, you know, like, but it's just it's, it's crazy, isn't it? Like, isn't it? Aren't people weird?

Malia 1:15:09
They are very weird.

Scott Benner 1:15:11
I don't think we're very far past being bugs. If I'm being perfectly honest, I saw some pictures the other day Malia, here's how we'll end. Okay. New NASA photographs of space. If you felt small, knowing that there were a certain number of planets in our galaxy. Wait, do you see pictures of other Milky Way's and things like that, and realize that every little speck isn't a planet or star? It's another like, Galaxy inside of another thing? Am I'm pretty sure we're literally like bugs that figured out how to talk. So yeah, definitely. So there's part of me that thinks that we should just all take our clothes off and run around outside again, like just people do that. Let's stop with these houses. And this idea that we're evolved. Because when, when seriously, when you take one of these things, one of these people, right, and they're there, they seem reasonable. And you say to them, your job is to keep your room clean. And then the rooms not clean. And you say hey, your rooms not cleaning the guy? No, no,

Malia 1:16:17
I got it. Yeah, it's fine. There's,

Scott Benner 1:16:20
there's a real disconnect there. So maybe we should all just I don't know. Let's give up. Let's all go to Bonnaroo together.

Malia 1:16:30
No, we don't want to give up. We don't want to give up. I don't know. I'm telling

Scott Benner 1:16:33
you, I know this is going to happen that the there's going to be this moment, I'm going to take a big deep breath, then I'm gonna get hit by a truck. Just I know it. I just know, there's no payoff for me at the end. I'm living in the moment. Well, yeah, that's

Malia 1:16:48
not, that's not a bad place to be

Scott Benner 1:16:50
not Well, let me just point out, as you heard earlier, I can't imagine what I would do with free time. So I don't know. And that's my mistake, too. I should be doing something with my free time. But I don't know, like, so much happens around you, as you get older, your parents start to get sick. And, and you like I said, like, it's such a throwaway thing, but like, you know, I my meniscus was torn in my knee, which I think happens every person my age at this point. And so you know, like, you know, I'm gonna get this fixed. I know a guy have gotten insurance, blah, blah, blah. And then it's like eight weeks later, and you're like, Oh, I'm finishing up my rehab. And and before you know it, you're like, well, there's like a third of the year is gone, so that my knee doesn't hurt. And then it's you know, and then you're just like, on to the next thing. What's wrong with my mom? What is my brother in need? What are the kids complaining about? Oh, it's a lake. Boring. Great, right? Kidding me? Alright. What are we going to call this episode? Drown them in a lake? Now? That would

Malia 1:17:57
be wrong. It would be wrong with it. We're not doing that.

Scott Benner 1:18:01
Hit him with an hour. No, no, that's wrong. Well, I'm glad you're sleeping.

Malia 1:18:07
I am sleeping. I'm sleeping. And we're actually we're actually on Omnipod. Five. So we just started that. And that's how things come to you. Oh,

Scott Benner 1:18:15
good. Good. I'm glad. I do want you to share with people. You didn't know how tired you were when you were tired. Right? You needed hindsight to look back to see, can you tell them how sleeping change things for you?

Malia 1:18:30
Well, mental clarity that's that is probably the biggest one. It's hard to process anything when you're exhausted. And it's hard to be a good person when you're exhausted. Yeah. I think I would overreact to everything. So just getting sleep helped me to process everything better. I was a better caregiver. I was a better wife. I was a better mother. I mean, I think on sleep, we don't realize how important that is. But once we could figure out how to do that, we were better

Scott Benner 1:19:03
is one of the thing. It's one of the hallmarks of being the parent of a kid with type one is finding a way to sleep.

Malia 1:19:09
It's finding a way to sleep. Yeah, it's and I mean, I hear that with other you know, people that are come on the podcast, and they'll say I'm exhausted. I'm just exhausted. And you know, I think any parent in general can really relate to that. But I mean, if you're, you know, a parent of a type one, you really know what that means. It's hard.

Scott Benner 1:19:26
Yeah. Do you think people listening are disappointed that I didn't make fun of Kentucky?

Malia 1:19:32
They might be. I listen, I travel for a living and visit a lot of different states and the joke's on Kentucky are there there. There are a lot of them.

Scott Benner 1:19:41
Are they unfounded or no? They're not. I've been to Kentucky once. Man I tell my Kentucky story here. Oh, of course. I went there for a wedding. And we Kelly and I actually to give a point like that. I won't be talking about here. So we decided to drive. And we could have flown, it would have been easy. And we're like, instead, Let's carve out a couple of extra days and take, just take it easy and drive. And I've told people before on the way back from that wedding, I said to her, I was like, this is the best time I've had in such a long time. Like, just because we were just not doing anything. You know what I mean? Like, Arden was somewhere with somebody and you know, we could watch your blood sugar well enough, and, you know, that kind of stuff. So we weren't thinking about that too much. I saw some old friends, which was really nice. But one morning, this is gonna sound stupid. I've never been to a waffle house before. I've just seen them. And I if for anybody who hasn't seen one, it's it's a, I'm going to call it a restaurant because that seems like the only way to like quantify what it is. But it looks like a place where you look at it immediately and think I shouldn't go in there. Yes. Right. Like,

Malia 1:20:59
it's a good description. Yeah, you're looking to

Scott Benner 1:21:01
go and exist. And I see people in there. But I know that this is wrong. I know that this is bad. There's no way this is good. It's gonna be scary. And but there was this one morning, it was after the wedding and Kelly and I didn't know where we were. And I was like, this is at Cal. Let's go to Waffle House. Like, let's do it. You don't mean like, this is going to be the time she's looking at me sideways. She's like, I don't know, man. I think this is wrong. It's like now it'll be alright. And so we walk inside. Every table in the place is covered, littered, actually, with old plates and food. There are five people working there. But they're not making any effort to clear the tables. And I look up and the guy says, We're not seated anymore. It's takeout only. Oh, wow. And I'm like, okay, and I started thinking like, well, they don't close for a long time. What do you mean, you're not sitting then I just realized they don't want to clean off the tables. So you can't sit down. I was like, all right. I was like, well, I'll just order supplies to the county. I'm like, Should we eat in the car? And she's like, I we should leave? And I was like, No, I think you're right. But like, we're here. Now we're inside. And so we order the stuff and pay for it. And the guy hands it to me in a bag and I look in the bag. And I'm like, There's no silverware in here. Like there's no like plastic knives and forks. And he goes, Yeah, we don't have those. I was like, I'm sorry, why? And he goes, Yeah, we don't have this. But you told me I gotta go outside and eat. And he's like, Yeah, I'm like, But how am i It's a waffle. Like, what am I going to do? And he just stared at me. And he's staring at me. And I'm staring at him. And I'm like, and Kentucky? Yeah, like, like, here's what I'm thinking. Right. And so, um, I don't need to use

Malia 1:22:56
silverware here, just so you know, you say?

Scott Benner 1:22:59
So. So I'm sitting there. And I'm like, Hold on one sec. I'm sorry. Sorry, I really had to clear my throat. So I'm, I'm at a loss. I'm holding $25 worth of waffles and other sorts of things. I have nowhere to go with them. And I said, Could I take some silverware from the restaurant? And I'll bring it back? And he goes, Yeah. And he pulls two forks and two knives. And he reaches out to me and I said, Alright, great. I said, I'm just eating in my car. I'll be back with him a little bit. He already said. You don't have to bring it back. Just throw it away. And I said, but um, I'm just 20 feet from the door. So when I'm done with it, I could just probably just bring it back. You know, I that's what I'm gonna do. I'm gonna bring it back to you because you don't have to. And I was like, okay, so I went out, we open up the styrofoam. I mean, even if you see the styrofoam, you're like, what are we doing? This is ridiculous. It's the worst waffle I've ever seen in my life. It's not great food. It really isn't how in God's name does a place called waffle house not produce a decent waffle?

Malia 1:24:12
That's eat I've never really thought about that. But they really should work on that

Scott Benner 1:24:16
thin, like the soul of an old sneaker. Okay. Moist, not, not, not airy and crispy. Everything was bad. The sides, the whole thing. My wife and I were looking at each other like she was she had the upper hand at that point, because she's like, well, this is your fault. You wanted to do this. So we finished all up and I collect up the garbage. And I dropped it in the trash can. And I took the silverware back in and I walked in and there are four people behind the counter. And I walked in and I'm standing there and they just don't acknowledge my existence. One of them's looking at me but not saying anything. And so I stood there for a second because I don't know what my polite, I just thought they might have something on their mind or doing something. It took me a minute to realize there's nothing on their minds, and they're doing nothing, and still haven't cleaned off any of these tables. And so I just I held it up in the air and I went, I have your silverware. And one guy walked past me when I said it. And then finally a girl came over and she's like, Oh, thank you. And she took it from me. And anyway, I don't know if that's a Kentucky story or Waffle House story. But

Malia 1:25:31
probably, well, maybe a little of both. But there are some there are some great things here too.

Scott Benner 1:25:37
I listen, a lot of it was lovely. A lot of the trip was really lovely. My Waffle House experience aside,

Malia 1:25:44
that's not a place that we frequent. No, I knew it was

Scott Benner 1:25:47
wrongly you understand that, right? Like it's not like yes, but I just got it in my head. I was like Waffle House.

Malia 1:25:53
Well, you got to experience it, though. So

Scott Benner 1:25:55
well, I have the experience. Now. I know not to do it. As a matter of fact, if Waffle House called right now and said I want to be a sponsor, I'd say I'm sorry. You can't. This is not going to work. There's nothing good I could say about Waffle House. I don't even know what to say it was it was it was crazy. It was insane. And the entire time we were eating the food just for context. There was someone cutting the lawn in front of us very slowly. And I don't know why they were moving so slowly on this tractor, but it was just it was insane. There was garbage on the ground and Malia

Malia 1:26:34
there are some lovely parts of the state.

Scott Benner 1:26:36
Yeah, well, we got the hell out of there right after that. So the wedding was wonderful, honestly, and, and seeing the people was terrific. They like had a barn wedding on all this property. It was very cool. Like the whole thing was really great. Aside from the Waffle House, but okay. All right. I didn't hear you stick up too much for Kentucky just then. So I'm going to let it go.

Malia 1:27:00
It is a great place, but you will find some very unusual things. Also. So

Unknown Speaker 1:27:03
you grew up there?

Malia 1:27:05
I did. Yeah. That's lovely. But it's so funny because I travel. I'm all over the country, you know, with my job and do a lot of work in Indiana. So just you know, an hour away and people will hear me talk and they'll say where are you from? Really? Like an hour from you.

Scott Benner 1:27:23
You don't have much of an accent in my opinion.

Malia 1:27:26
Oh, thank you. I get I actually get that a lot with people tell me I have an accent.

Scott Benner 1:27:31
I mean, you do but it's not thicker, harsher. So colloquial, that I don't know what you're talking about or anything like that. Good. That's good to know. Yeah. Good for you. Look at you, representing Indiana. I like how you're like I'm all over the country. I sometimes go as far as Indiana. Well, I

Malia 1:27:50
just was making the record, like making the reference that I go just an hour away and they say

Scott Benner 1:27:55
you sound so where are you from? Yeah. Hey, how often do you get to see the ocean when you're from the middle of the country?

Malia 1:28:01
We make an effort. Okay. Yeah, we make an effort. We go, you know, a couple times a year.

Scott Benner 1:28:07
Which way do you go south? South? Yes. It's usually like Texas to that.

Malia 1:28:12
No, no. No. Ocean. We don't go to Texas. That's just too far for us.

We usually go to like, Destin, we handle Oh, like destin like Florida. That's not that's 10 hours.

Scott Benner 1:28:26
I don't know where anything is. Like when you said when you said like you go to another state. I was like I don't know where that is.

Malia 1:28:32
We're at least eight hours away from any ocean.

Scott Benner 1:28:36
By by car. By car. Okay, yes.

Malia 1:28:39
So that's why we get to the lake a lot. That's what we do. We just we just fun inland water.

Scott Benner 1:28:44
So your kids can complain about that. They can play the ocean too. By the way.

Malia 1:28:48
I will find something to complain about I'm sure.

Scott Benner 1:28:54
Well, least you're not exhausted anymore. So you're not gonna snap and leave them there or something?

Malia 1:28:59
Maybe not. I don't think so. I don't think so.

Scott Benner 1:29:02
They're staring at the ocean you just look at you're too close

Malia 1:29:05
to the end now. Right? Like at this point, I'm just I'm yeah, we're getting close. Wow. Yeah, you're 1814 Oh, God,

Scott Benner 1:29:12
you have no idea. It's not even. It's not even half over yet. Good luck.

Malia 1:29:17
I was trying to ended on a positive note. I feel like I've really dragged Yeah,

Scott Benner 1:29:20
no, no, no, I think you've made a listen. I've enjoyed this conversation. But anyway, I appreciate you coming on very much.

Malia 1:29:29
Thank you. I've really enjoyed this tool. I'm

Scott Benner 1:29:31
glad Hold on one second. Okay.

Let's start off by thanking Malia for coming on the show and sharing that terrific story with us. And we're gonna thank cozy earth.com and remind you to use the offer code juice box at checkout to save 35% on your joggers, your sheets or towels, whatever. Business don't forget you can get 10% off Your first month@betterhelp.com When you use my link better help.com forward slash juicebox. And you can take that survey AT T one D exchange.org forward slash use box right now take you 10 minutes. help everybody help yourself T one D exchange.org forward slash juice box if you're looking for community around your diabetes, please check out the Facebook group Juicebox Podcast type one diabetes, it has 35,000 people in it I think it grows so much it's hard to keep track of people with type one type two lot of parents caregivers, adults to really complete and lovely place. You should check it out.

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