Our T1Decade - looking back at ten years of T1D with my whole family (replay)

This episode title is a bit misleading (sorry!) because Benny is actually marking 17 years with type 1! He's away at college and while I hope to talk to him for the show soon, we just couldn't swing it in time for his actual diaversary. To mark the date, we're going to replay the first time I talked to Benny for this podcast – which I did along with my husband and my daughter back in 2016.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

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This is a longer episode, so I wanted to break it down a bit - and a full transcription is below.

00:00 2023 Stacey introduction, talks about Benny's 17th diaversary

03:55 2016 Stacey explains how the order of interviews and a few housekeeping notes

05:22 Slade

24:27 Lea

40:42 Slade (part 2)

1:12:15 Benny

1:26:07 2023 Stacey wraps it up

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Episode transcription below - our transcription service doesn't speak diabetes perfectly, so please excuse any mistakes. Thanks!

Stacey Simms 0:05 This is Diabetes Connections with Stacey Simms. This week is my son's 17th diversity 17 years with type one to mark what's really his entry into being a young adult with T1D. He's almost 19 We're going to take a look back at when he was a lot younger. We've got a replay of the first time I talked to Benny for this podcast back in 2016. It's a conversation that also includes my husband and my daughter. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of the show. I'm your host, Stacey Simms. And you know, we aim to educate inspire about diabetes with a focus on people who use insulin. I am not great about remembering Benny's exact dye aversary. And most of the reason why is because his diagnosis was very, it was prolonged, I would say it really only took a week, maybe a week or a couple of days from the time that I called our pediatrician and said, I don't like what I'm seeing Something's really wrong to an actual in hospital diagnosis and, and all the education that goes with it. But we had so many bumps along the way. And I've told these stories before, you know, a fasting blood glucose. That was normal, it was 80. And that was on a Monday. And then some subsequent diagnoses of things that we now know were just symptoms, you know, infection, things like that, that they treated, and we thought, yeah, we got it. And then finally, the A1C results, which came back five days after that initial fasting blood glucose, which is when they sent us to the hospital, all of that to say I remember the days of the week, Monday was the pediatrician Saturday was the phone call to go to the hospital. But I never remember the actual dates. Social media memories usually remind me and sure thing they came up this morning. So I'm recording this on Benny's actual 17 year diver serie on December 2,

December also means and I need to tell you one quick thing about moms night out that the early bird special for Charlotte is over. I do have a promo code for you that you can use on the regular price to save $30 off. And that promo code is m n o 30. Mom's night out m and o 30. You'll save $30. With that I will put a link in the show notes. You can always go to diabetes dash connections.com. We have a mom's Night Out tab as well there now. If you go there we are announcing our next cities this week, I may have already done so. So follow on social for that announcement or click on over to the website, click on the mom's side out tab. See the new cities registration is not open for them. But you can sign up to be emailed directly when registration does open. And for more information.

All right. I am hoping to talk to Benny for a new episode soon. As you know he's away at college. And I cannot wait to get that kid home for winter break. As this episode goes live. I think he's coming home in about 10 days, not that I'm counting diabetes, while he's been away has been fine. But I've tried really hard not to ask him a lot of bout it other than once in a while like you're doing okay. Right? Because we don't follow his Dexcom anymore. And I really don't know much day to day. You know, he's reordered supplies with me. So I know he's he's doing that kind of stuff. I can't wait to talk to him more. I will let you know when we're going to be taking questions for that episode, we'll post to the Facebook group for that. These conversations you're about to hear were recorded in fall of 2016. Benny is in sixth grade, his voice hasn't even changed yet. Oh, my goodness, I left in the original introduction, which gives more context. But I also want you to know, this is a much longer discussion than I remember. So I'm going to do more comprehensive shownotes with some time codes, if you want to kind of jump around on this episode and pick and choose where you want to listen. So here we go. My family's thoughts on one decade. Remember, this is seven years ago with type one.

Stacey Simms 03:55

This part of the podcast is usually where I interview somebody else get them to share their story and their thoughts about living with diabetes. This is different. This is my family's story. And let me tell you, this is what I've done my entire career, talk to people interview people since before I even graduated from college. And these are the toughest interviews I've ever done. I was so nervous. But they were they were wonderful. And I was just thrilled that they agreed to even talk to me. My husband and my daughter are really not front and center. Attention people. I don't know how they live that way. But here's how it's going to go. You're going to first hear from me and my husband Slade. And then you'll hear from Leah. We're in the middle of that interview. I'm going to pause the conversation. And then you'll hear Leah's interview, because I had maybe the most Frank, honest and open conversation about our brothers diabetes that we've ever had. And then we'll wrap that up and you'll hear more from me and slay And then finally you'll hear from Benny. Oh my gosh, that kid, if you have a middle school boy, maybe you'll understand that conversation was, let's say it was interesting. There is a bit of overlap in these conversations as you'd expect. I mean, there are some events that we all talk about. So you'll hear about those things more than once, that sort of thing. Okay, here we go. I'm really interested to see what we talked about today because Slade doesn't really talk about Benny's diabetes publicly. I mean, of course, you you're very, very involved, and you talk about it, I'm sure with friends, and things like that. But it's not like you are front and center at functions. And, you know, that kind of thing over the years, I don't

Slade 5:41 have a podcast,

Stacey Simms 5:43 I could help you set one up. But I've been told in the past, I speak enough for everybody in the family. So I'm really interested to hear what you have to say if your conversation matches mine. Alright, so let's start 10 years ago, Ben, he was diagnosed with type one. He was not yet two years old. And Leo was just had just turned five. What I remember vividly is the month before he was diagnosed, when I was working at WB T, doing morning radio, you got the kids every morning. So you used to text me, like 730 or seven o'clock every morning and say, you know, kids are okay are off to daycare or you know, here's a funny picture. And you texted me one day and said you are not going to believe the amount of pee that came out of this kid. Do you remember that? Like the mattress is soaked in the floor was wet. I

Slade 6:35 remember one morning, getting him out of his crib, right? And the entire mattress was soaking wet. Like everything. All the blankets were wet. The pillow was where the entire mattress was. So it was I'm like it didn't make any sense to me.

Stacey Simms 6:53 Right. And you know me at work. I was kind of thinking when you trade off like we did because sleep had a restaurant for many years. So I had the kids in the afternoon and in the evening when he was working. And he had the kids every morning because I used to do a morning radio show that started at 5am. And I just remember thinking, not on my shift like you gotta fix

Slade 7:14 which I did right away. Of course, drying the mattress out trying to figure out what happened, but we

Stacey Simms 7:19 kind of thought it was a one off. Oh, yeah. Because it didn't happen again for a while. Yeah. And then it happened to get about three weeks later. Well,

Slade 7:25 we noticed I think from that point on over the next couple of weeks that he was drinking a tremendous amount of liquid for a 18 month old or 20 month old. It was you know, and he would suck down a little 10 ounce sippy cup in like, you know, 15 or 20 seconds. It was absurd.

Stacey Simms 7:45 So the the mattress wedding thing was in October, I think late October or something. And then of course, there was Halloween, which I'm sure didn't do him any favors. That was the year the kids dressed up. But it was the only matching costume we ever did. Leo was Ariel and Benny was flounder. And then, at Thanksgiving, we had family photos on the Friday of Thanksgiving that year. And then we went to the lazy five ranch. And I've told this story before one of my brothers was here, right brother David was there, right? And I posted that picture recently on Facebook of David and Benny with a giant glass of orange juice. And then we went to the lazy five ranch and of course Benny couldn't he was still in diapers and he was soaked and he was just laying down and he was exhausted. He felt like garbage. And then that Monday, we went to the pediatrician that Monday right after Thanksgiving, right? And

Slade 8:37 then I mean, I think they did a fasting glucose and a few other things. And they thought he had a urinary tract infection knew and I already had suspicions that it was something more like it didn't make any sense. Yeah. And then it was a few days into an antibiotic for what they thought was a urinary tract infection and there was no change. And so his outward symptoms continued to be the same right where he drank tremendous amounts of water and liquid and was always going to the bathroom.

Stacey Simms 9:08 Well on that Monday when we went to the doctor his as you said his fasting glucose was normal. It was 80. And then they did a blood draw. They must have found something in his urine, right? They must have found sugar in it because I remember they did a urine test to do a urine test on a kidney. They didn't

Slade 9:24 remember that we had to kind of push for them to do an A1C like they it took a week or so. Yeah,

Stacey Simms 9:30 but we didn't ask for A1C We just asked for a blood test. I didn't know what we were asking for did I remember holding you had to hold him down? Yes, I did have to hold them down Leah was in the hallway Leah remembers that remember some screaming?

Slade 9:40 It wasn't exactly pleasant.

Stacey Simms 9:44 Yeah, and then he did that they said I had a urinary tract infection. And I remember when we treated it he seemed to feel better once a day right just from the urinary because he did have one but you know job raucous or pediatrician friend down the street said to me Why would a healthy two year old boy have a urinary You're trying to keep keep looking. So I was convinced at this point that he was he had contracted a fatal disease. I was on the internet. I was looking at all sorts of horrible things. I thought he had kidney cancer. I really did. I was so scared. And then he seemed to feel better. And then on Saturday, they called us and David was still here. And they called us on Saturday and said, like it was an emergency get to the hospital. But they wouldn't. They didn't tell me why. Well, they did tell they thought they told me why because they told me his blood sugar was like, you know, 700, or the A1C correlated to, you know, I don't know what it was. But I remember thinking, He's fine. He looks fine. He's doing okay. Why do we have to rush to the hospital? But we did.

Slade 10:33 Yeah. But I remember during that week that we kind of, we were guessing that it might have been diabetes?

Stacey Simms 10:42 Oh, well, yeah. Because most people and you know, the symptoms matched perfectly. But I think it was the fasting glucose being kind of normal that threw me off. And I of course, went to worst case scenario,

Slade 10:51 you went, you definitely went deeper. But you know, still concern. Yeah. Not knowing. And it's, it's a scary thing, when the doctor calls and says, Take your kid to the emergency room. And you go while he's walking around playing with some toys, he's just fine. So and then, of course, it's just a, it's a crash course. Right? You get admitted in two days later, you're out and you have diabetes and have to live with it the rest of your lives.

Stacey Simms 11:19 Oh, you know, one thing I forgot is, when we took him to the pediatrician that first time on the Monday after Thanksgiving, when I called, we knew just enough to say he's got the symptoms of type one. We knew that much that the pain and the drinking, because of all the stuff I'd done with JDRF already and in Charlotte, and my pediatrician, Dr. Scott said, I've never seen it in anybody younger than two. Right, bring him in, and we'll rule it out. And thankfully, you know, they took us seriously because I've heard some nightmare stories of people that don't. But what's funny is, here we are 10 years later, almost every time I go to that pediatrician, and it's one of these big practices with like eight doctors, they all look at Benny's chart and we go in, they say, oh, like he was the youngest one we saw at that time, you know, and now of course, there's lots of kids that are diagnosed younger, unfortunately. But for that practice, it was it was unusual. It's pretty unique.

Slade 12:07 Yeah, I just I just distinctly remember that we had to push a little bit. Yeah. To get them to think in that direction.

Stacey Simms 12:15 Oh, when he walked in with AD, yeah, they tried to figure out something else. So

Slade 12:19 I mean, I think all that really says is, doesn't matter what the age or what you're thinking, you have to be your own advocate, you know, in some way, shape or form, if you're not your voice, then there's an opportunity to miss something. Right? Not get a good look at it. So I think that I think that not going down the you know, the rabbit hole right? To something considerably more catastrophic. And trying to rule that stuff out. You have to, you have to ask and you have to instruct and you have to, you know, your medical team, you have to be part of the conversation, right? You can't just tell me what to do.

Stacey Simms 13:04 But it's hard to in some ways, because you don't know what you don't know. But you're I agree with you. You have to we've learned this for many years. Now. You got to push you got to be your own advocate, you got to ask questions. But, you know, if I didn't know, peeing and drinking was a sign of type one, I don't think I would have known what to ask the doctor. Right. But

Slade 13:19 I also think that that I don't think doctors are offended by that. I think that that helps them do what they're trained to do is help. Help people get better. And if you're not engaged in the conversation, it's a one way street. Yeah. It

Stacey Simms 13:32 would help. Alright, so we're in the hospital now. And I remember he had those things. What are those things called all over you with a stick you the sticky things I had like an

Slade 13:41 EKG monitor, right, and he kept pulling

Stacey Simms 13:43 them off?

Slade 13:44 Yeah, that couldn't have felt good.

Stacey Simms 13:48 That was like when we first started using the Hulk analogy, because he was like the baby Hulk pulling everything off.

Slade 13:54 Well, it's interesting, and he doesn't have any idea what's going on.

Stacey Simms 13:57 But that night, we took turns, you know, you went home. I stayed. And they pretty much didn't tell us until the middle of the night that he had type one. They kind of I think everybody thought we knew. And finally I asked if they had a diagnosis. And they said, Yeah, he's got they would like yeah, he's got type 1 diabetes. I mean, they were nasty about it. But I think everybody thought someone else had told us along the way.

Slade 14:19 We didn't see Dr. Werner alto second day or the next day. Yes. We

Stacey Simms 14:23 went in on Saturday morning or Saturday, mid morning. We saw nurses and hospitalists there was that one horrible woman. She came in and she smelled. She didn't say anything to us, like not Hello, how are you? I'm so and so she came right in and smelled him. And now I know it was for fruity breath. Right? So when she came in, she smelled him. And you know, I am of course very calm. I said, What are you doing to my son? Who were you? She kind of explained but she kind of left us like you're not coming back and just I don't know what I said. I'm sure it was very nice. But yeah, that night we met the hospitalist. And that was when that was when he said to me, who stays home with Benny, not our endocrinologist, but but just a hospitalist, a doctor who sees people in hospital. And I was already panicking because I had my dream job. And I had health insurance. You had a restaurant you owned a restaurant is that like you can untangle from that pretty easily? You know, I'm closing the doors. When

Slade 15:21 we tried to untangle from it, it took a long time.

Stacey Simms 15:25 And I was terrified because it couldn't really quit. I wanted to quit my job. But I had to health insurance and I really didn't want to quit my job either. So we said who stays home with Benny? I said, nobody really nasty. And then I burst into tears. And you weren't there. And Vinnie, do not remember you were not there. He was another night. And then then he put his kidneys awake. He's 23 months old. He puts his arm around me. He says it's okay, Mommy. I was like, Dude, you better get your stuff together to myself. You bet this is your 10 year old is comforting you this is not how it's supposed to work. And that was a big turning point for me. And like the guy was great. He said, I'm sorry. He said, What I should have said is what's your situation? He's like, I'm just trying to help you acclimate? And he told us even go back to daycare. And he you know, nobody said no to us. They'll try to help us figure out how to make it work. But that moment was a big turning point for me.

Slade 16:14 I don't think I had any big turning points. I mean, the only thing that I realized was, you know, when we finally did come home, and you know, I went grocery shopping.

Stacey Simms 16:26 Oh my god, wait. So hold on. Let's get there. So we met Dr. V. The next morning on a Sunday. And he came in and I remember him coming in and saying hi to us and being great. But getting right on the floor with Benny. Yeah,

Slade 16:39 and what I remember. And and you have a better memory than I do. But what I remember is him saying listen, based on where we are today with treating this. There isn't any reason he shouldn't have the exact same life he would have without diabetes that he has with diabetes. I mean, that was that was that just set the tone? Right?

Stacey Simms 17:00 Yeah, it really did. And I remember, thank you. I will anyway, I remember, like my first questions to him, because what do you know about diabetes? Right? You know, type two, I remember thinking and asking him like, do I have to cut his toenails differently? Like? He was like, Oh, I could see, right? Yeah, take a deep breath. And like, this lady is gonna be fun. But he got right on the floor and met Benny and I don't think he had kids at that point. He did not. Yeah. And he was terrific. But I interviewed him. I said to him, you know, I'm glad to meet you. But you know, I don't know anything about endocrinology, or endocrinologist, or endocrinologist in this town. Right? Of course, I want to make sure that my child has the best. So I asked him a million questions. And he was great. He was really great. Yeah,

Slade 17:49 I just think he set the tone that said, hey, what you're going to deal with is lifelong. And then that's the way it is. But it's not life threatening. Yeah. Doesn't have to be life threatening, right?

Stacey Simms 18:03 He didn't he didn't come in and tell us a cure is around the corner. He talked a little bit about the artificial pancreas. I remember because I asked him about technology. He he did say that they were one of the first practices in the country that routinely gave pumps to toddlers, because this was 2006. So that wasn't happening all over the place that he thought that Benny we know down the road, we would talk about that. But he was not overly he didn't promise anything.

Slade 18:30 No, actually he did. He promised us Benny would have a normal life if he took care of himself. Right? Well, that's true. It didn't make that that's

Stacey Simms 18:36 true. And that was very reassuring. And he has been consistent in these 10 years. He said, The three things that he says at almost every appointment, I'm pretty sure he told us then, which was he wants to make sure that he can live a long, healthy life he's supposed to, that he has, he feels good, and can enjoy life right now. And that we find a way to make diabetes fit into what he wants to do, and not the other way around. And we've been able to do that pretty much. It's not you know, when people say, Oh, diabetes can't stop you. I mean, some of that I, you know, I shake my head a little bit or I raise an eyebrow because, you know, obviously diabetes definitely can slow you down. And there are days when it can stop you. That's okay. I mean, you know, when you break your leg, it's gonna stop you. You know, I you know, it's I know, it's a mindset more than a truism. But, you know, I think we've had a pretty realistic look at it. Yeah, I

Slade 19:27 think you as you go through, particularly growing up, and there's, you know, there's minefields everywhere, right? It's just one more minefield, right? I mean, it's something else, you have to navigate it and it gets added into your routine added into the way that you think. And it's, yeah, it's a it's a burden because it's different than what a lot of your peers have to deal with. Is it a burden in it in that it can be a roadblock to accomplishing something you want to accomplish? like you and I think that way, I don't think that's true.

Stacey Simms 20:02 We try not do not it's not a not a dead end road, you can make it that way. Well, it can be a roadblock that you can overcome, right. But it shouldn't stop you in your tracks.

Slade 20:11 You can do a lot of what was me? Well, yeah, well, that's different, right? You can do a lot of what was me, but there isn't. There's a, there's a roadmap to accomplishing what you want to accomplish with diabetes. All

Stacey Simms 20:24 right. Speaking of routine, let's talk about that grocery store.

Slade 20:28 That was hysterical. So, you know, of course, you know, when you talk about diabetes, you talk about carbs, right. And as you load your body up with carbohydrates, you need insulin,

Stacey Simms 20:38 oh, and I should add, we were put on a carb counting regime or a carb counting routine. Immediately. We didn't do any eat to the insulin, it was all give them as many shots as you want, right? And count carbs and dose him that way. Right. I mean, obviously, at first, we tried not to give him a lot of injections. But we were some people go on different routines at first, right? We weren't, we were all carb counting from the beginning,

Slade 21:00 right? But it's really all about, you know, the basics of understanding how to take care of yourself is you have to know what you ingest, right? You have to know what you eat. And you can give yourself insulin to help your body, right, continue to move forward and act the way it should act right by adding an insulin. So we're like, you know, maybe we should really go low carb or no carb. So I went to the grocery store, I think I spent two and a

Stacey Simms 21:30 half hours. That's what I was gonna say. It was definitely two hours. And

Slade 21:34 I it's I think I know the label of every item in the grocery. But I just went and bought everything that was low carb when he came home and put it in the cupboards and put in the refrigerator and he loved some of the food and fed it to him for a few days and then realized we were feeding him fat. Yeah,

Stacey Simms 21:50 we did two weeks almost of Atkins, basically. And I lost about six pounds. It was, I'm sure that had nothing to do with being crazy. But yeah, I mean, we went from eating, moderate. Everything in moderation and pretty healthy. I mean, our kids were five and not an almost two. It's not like they were drinking soda and McDonald's all the time. But we were eating things like oatmeal for breakfast and pancakes and stuff. And we went to eating sausage. And I don't it was ridiculous. Like everything

Slade 22:19 was a lot of me. Yeah, it was a lot of meat and a lot of cheese. And we realized is we're just gonna, we're just eating fat, and we're gonna kill him. So after a couple of weeks, I actually threw a bunch of that stuff out. But

Stacey Simms 22:29 the turning point for me or the final straw was when you were like, how about pork rinds? That's a good snack. He's doing we're Jewish. I mean, we don't keep kosher, but I don't remember. I was like, that's, I know, many people enjoy pork rinds. I'm not. I don't, I bet he would love them. Now. You can find some things, I mean, olives, beef jerky,

Slade 22:56 just remember kind of throwing it out and go, that's it, we're just going to, I'm going to feed him the way we would normally feed him. And, and we will treat him medically the way that we are given the tools to do it. And that's what we're gonna do.

Stacey Simms 23:08 And we also counted every carb tried to do it exactly. I think it's I think the whole thing, we figured it out two hours of routine to our day, because we had a yellow legal pad, right, we wrote everything down. We've got all the food, the dosage, the routine, but we were counting carbs, and ketchup, and green peas. And I mean everything because that's what we were told to do. Right. And I remember going for a follow up, when you go for free first followed two months later, one month later, and there was a mom and dad was like, really? This is excellent. But you do not need to do with the two cards that are in the ketchup. Well,

Slade 23:40 I still think actually, that's kind of important, because you need to understand that it's out there. You need, I mean, their cards, you're ingesting

Stacey Simms 23:47 what we need, and we needed to do it then to learn. Yeah.

Slade 23:49 And that's what happens is you learn you know, kind of what carbs are, where they are, where they're hidden, how your body reacts to them, particularly how Benny's body reacts to them. And then it's really kind of an art at that point, right? It's not really a science. I mean, there's all kinds of ratios and logarithms and all that stuff. But it really comes down to everyone's body is a little different. And it's it's much more like juggling right than it is like anything else.

Stacey Simms 24:27 I'm gonna pause my talk with Slade here and bring in our daughter Leah. She's three years older than Benny four years ahead in school because of where their birthdays fall. And about 40 years older in maturity right now, you know, it's okay to say that I was so happy she agreed to talk to me about this. And this might be the best discussion we've had about her brother and diabetes. I will say I remember a few things a little differently. But this is her story. Alright, so let's start at the very beginning. I when I talked to dad, we talked about when Benny was first day He noticed and one of the things that I brought up was when we had to take the first blood draw. You were outside of the doctor's office. Do you remember that? No,

Lea 25:08 I remember the electrodes, but and him always pulling them off. But I don't remember the blood draw. We

Stacey Simms 25:13 because you went to the pediatricians office with us. And he was screaming his head off, and you were in the hallway. Because you were just you just turned 508.

Lea 25:21 I think I do. Remember I was playing with my LeapFrog. And I was sitting in the hallway. And I was like, I would hear screaming, but I'd be like, Oh, it's whatever. It's fine. I'm gonna play my game.

Stacey Simms 25:33 And then we went when Benny was in the hospital. You remember the electrodes and Uncle David was with that

Lea 25:38 was funny. I mean, because I didn't understand what was going on. So it was funny, because he had electrodes all over him. And he would just like, pull them off. So they couldn't do anything. And I mean, he was crying and like, you were very frustrated. And I'm just laughing because I had no idea what was going on.

Stacey Simms 25:52 And then the next day, we actually went ice skating. It was our community ice skating thing with when we were making the temple. It was like our first time though, into the ice skating rink.

Lea 26:01 Did the rabbi go,

Stacey Simms 26:03 I don't think they had the rabbi yet. It was just us. And you were very little. Okay, so you remember, okay, so what do you do you remember, like, what kind of things you remember from when you were little.

Lea 26:14 I remember very general stuff. I don't really remember like specific instances. Like when he was first diagnosed, I didn't think anything was wrong. But apparently he was like, drinking too much and peeing too much. And I was just like, Yeah, whatever. Because I was not the biggest fan of my little brother. And I remember, as he got older, and I think it was more, I was less of like a small child and more of like, preteen, I was very upset because he'd always get so much attention, which now it's like, you get it, because it's an awful horrible thing and all blah, he needs all this stuff. But as as a small child, it was like, pay attention to me, Mother, I exist to you have a second child who was actually your first child. But you know, it was cool. I was an only child for four years, which was a wonderful thing.

Stacey Simms 27:03 It was like, almost three years. Before, it was three

Lea 27:07 years. Like for almost four.

Stacey Simms 27:10 It was almost three, it was three U turn three, November, whatever. And then he was boring. Okay, very similar. But I remember a lot of when you were very little as you were a big helper. Like when he was first born, you would help me with the help with the baby, you would help with diapers, you would read to him every night, you know, to get sick of him all that stuff. And the same thing with diabetes. You wanted to learn how to do everything. You guys would give shots to the stuffed animals.

Lea 27:35 Oh, yeah. The Little Bear and there were like little patches on it. Yeah. That's Rufus the bear with diabetes. Oh, that's fun.

Stacey Simms 27:44 That's nice. And right. So you would do that. But you were very helpful to me in the backseat of the car. Because when you have a kid in a baby seat, basically, right, he was in front facing. I don't remember what the requirements were now. But like, you'd have the three point harness the five point harness those kinds of chairs. And so you were next to him? And if he was low, you you actually checked him once or twice for me when you were like five or six years old. You did? And then yes, and then you but not often, but you were very responsible. And you were like I'll do and usually I would pull over if I needed to like if dad wasn't mad. That's I mean, it wasn't making you do it. But you did it once or twice. But you were always willing and helping me the juice boxes and stuff like that. So much

Lea 28:23 has changed.

Stacey Simms 28:27 But then as you got older, like you said, it became more of a why? Why him? Why are you giving all the attention kind of thing?

Lea 28:34 Because I never, I mean, until now I never really fully understood what, like, why he got so much of the attention. It was always just like, you spent so much time like talking to him talking about him, like calling people about it. And just you had all this you had like Lantis and Hume along, whatever all that stuff is just words that I hear around the house. But you had all of these packages shipped, like every couple of months or like, whatever you would go to these conventions and the walks and it was just like, well, let me do my walk, Dude, where's the layup walk?

Stacey Simms 29:09 Do you think we should have done a better job educating you about diabetes? Because I feel like we did tell you it's

Lea 29:14 not that I wasn't. It's not that I didn't really understand what it was it was just that like, I was a child. And I still am a child, but it's like, pay attention to me pay attention to me. It wasn't that I didn't know that it was some awful thing that he like needed to have all this attention because I knew that it was just like, why can't I also have attention? It wasn't like I was trying to take it away from him. It was just like me to say him.

Stacey Simms 29:37 What would your advice be to parents listening to this who have a kid with type one and other kids who don't in the family?

Lea 29:43 Well, you certainly don't have to. You shouldn't like take attention away from a child with diabetes just because one of your other children is feeling a little like left out but that doesn't mean that you can be you can totally ignore that child because they're still like They're your child. They're there, they need you. But it's, I think it would be better if you if someone explained to me that, like, if you'd like sat me down, and with Benny, and been like, this is what's happening, blah, blah, blah. This is why we give them so much attention. It's not that we don't love you. And just something like that. And sure, I probably still want to complain, but whatever. Like, it's fine.

Stacey Simms 30:23 So like, the little things that we tried to do, like weekends away, or just you and me stuff like that, like spending,

Lea 30:29 spending a weekend with my dad or with my mom, like, that's great. Because it's, it shows like, sure you spend basically every second of every day worrying about this other kid. But you still have time for me, which is pretty awesome.

Stacey Simms 30:43 So tell me about camp a little bit, because this is something that you and Benny share that you do not really share with me and your dad. You I don't know if you remember, but used to come home from camp. This is the regular summer camp slip away for about a month. And tell Benny, it's gonna be so great. You're gonna love it, you know, can't wait. So you would go and I would always think there's no way. There's no way and you were ready to go when you were eight. And when he was eight, I was not ready for him to go. But we sent him anyway. What? Do you remember why you want them to go? Did you just think he would have fun?

Lea 31:14 Well, I mean, when he first went, what unit like, well, how old was I? When he first went?

Stacey Simms 31:21 Well, he was bony one. So you would have been three years older than that. I don't know how we can never keep track of those things. Well, he

Lea 31:26 was like eight when he when he was eight. So I would have been like 11. Yeah. So at 11 It was still very much like it will because because of the fact that he's had diabetes, and we've known for so long. It's just kind of part of our lives. And I don't think of it as like this huge deal. Like it's just something that he just has to deal with him. It's like whatever, because he's a normal kid. It's not like, it's not like some other things that people can get where like you see, like, what you see the symptoms or you see, like the damage that it does, it's just sort of something that you have to deal with. And it's just like, whatever. So, I mean, it never even occurred to me that like he wouldn't go to a sleepaway camp, because that was just like, oh, yeah, it's like, Andy has diabetes. It's like, he's got brown eyes. He's got diabetes, like whatever. So, I mean, it was it was just, like, such a fun place to like to go and to get away. And it was, like, you get to do so much there that you don't really get to do at home. And it was never, it was never about him. Like, oh my gosh, he's my brother. I love him so much. I want to come to camp. It was like, I want you to experience this wonderful place. But it was it was never, it was never about the diabetes. It was just about him wanting to like go,

Stacey Simms 32:37 I don't think he ever would have gone if you hadn't been so excited about it. Because that was part of the reason I wanted him to go because you liked it so much. That was wonderful. Yeah, he's really has a good time there. I mean, I'm so glad you had such a great experience to

Lea 32:50 take my place. Okay,

Stacey Simms 32:52 okay. All right. So that was great. I can't

Unknown Speaker 32:55 go anymore. Yeah,

Stacey Simms 32:56 you're too old for camp. Now. That stinks. No,

Lea 32:59 but I can go back this summer if I wanted to. Next summer next summer. Yeah, but I don't think I would I might be counselor, be counseling

Stacey Simms 33:06 keep your brother in line on the different side of the camp. Okay. Has since since Benny was diagnosed, I know you've met other kids with type one. But you don't come to conferences much. So it's not like this is a hey, it's a type one atmosphere, you know, other than the walks and things? Do you feel that? First of all, have you ever talked with someone and I haven't really been asked this question. But like, do you feel like knowing about Benny's diabetes has maybe helped you get to know other kids with type one better?

Lea 33:38 Not really, I mean, most of the people that I talk to, like kids my age, or adults or kids Benny's age, it's always, like, that's just sort of a thing that we both know about them that they have diabetes. And it's we don't, I mean, the most that we would ever talk about is like if they were low, or if like they had to bolus for something, and it would never be like a big deal. And most of the time, we would just talk about like, other things, just because, I mean, for me, I'm just so used to my brother having it. And for them, they have it, so they just kind of have to be used to it. So neither was ever make a big deal out of it. And it's just kind of like whatever,

Stacey Simms 34:11 it would be kind of weird. For teenagers, you'd be like, so tell me about your type 1 diabetes.

Lea 34:18 You wouldn't. I mean, you can certainly have a conversation with somebody else about it if you don't have it yourself. But I mean, unless you're like you're very new to what diabetes is. It's generally not a big deal. Like if you're talking to somebody who has diabetes, you generally know they have diabetes, and that's why you're talking to each other. So it's never really like a major point of discussion. If that makes any sense. Got it. Did

Stacey Simms 34:47 you ever have a moment where you were scared with Benny?

Lea 34:51 There was I was like, it was like five minutes where you first showed me an epi pen like in case he got like really low. Oh, the glucagon, glucagon. It's an epi pen.

Stacey Simms 35:05 But it's okay. But it looks like the same thing.

Lea 35:07 It does the same thing. And I remember like you came up and you showed me and it was like, this big red needle or whatever. I'd never seen anything like it. And you're and you explain the whole thing to me. Like if Benny gets really low, or this happens, or if he passes out, you have to stab him in the thigh with this giant needle. Like, if nobody else was around, you have to do it, or he's gonna die. How old was like nine, five?

Stacey Simms 35:30 No, I don't think I'm kidding. I don't remember how

Lea 35:35 it was before I turned 10. I remember this. And I was just like, What on earth is this? You want me to stab my brother? If he's like lying on the ground? But and you're like, keeping it in the cabinet downstairs? And it's like, what is this? But I mean, other than that, it's pretty much been totally normal. And

Stacey Simms 35:52 it's funny because some of our babysitter's we found because of diabetes, and you've learned to be really good friends with them, which is pretty cool as you've gotten older. Yeah. But

Lea 36:01 it was never because of their diabetes. It was just like, oh, you know how to take care of yourself. You can take care of our child. Well, it

Stacey Simms 36:07 was for us it was for you had nothing to do with it. What do you care if they had diabetes, it was just one of those things that we felt, we just fell into these great, we found great people. And, you know, like our neighbor, Christina, who was diagnosed as a young adult, and now she's family friends, which is really nice. She's pretty awesome. She is pretty. So family is pretty awesome. Do you worry about Ben growing up with diabetes or being an adult with diabetes? Now? Have you ever even thought about it? Um,

Lea 36:29 I'm not worried for him. Not, not with him being able to take care of himself because he's totally capable. I'm just worried about like, what other people might say about it. Because when, because, people when you hear diabetes, you think of like, generally what people think of diabetes I think of as normally type two, which you can get, which is like, generally related to like obesity, or just being overweight and not healthy. But he has type one, which is totally different. And I just, I don't know, kids are mean. I mean, really, kids are kids are mean. And I don't know, I'm not worried about him. I'm worried about everybody else.

Stacey Simms 37:06 In what they're gonna say that you'll beat them up if they're meeting of course. Alright, let me just make sure before we start, people had questions. I think they were mostly for Benny, but somebody did so offended. Will do me a question. It gets all the attention. I

Lea 37:21 know. Isn't it? Great? Let's see if all this it's okay to complain about your sibling getting all the attention. I think that's a great point.

Stacey Simms 37:30 Definitely. It's okay to complain better than season.

Lea 37:34 See thing. Don't hate your parents. They're just trying to keep your other sibling alive. Oh,

Stacey Simms 37:40 this was an asked these questions. I would love your daughter's perspective. Did it cause her to be jealous? attention seeking, seeking? And how does it feel to have to worry about him? Or do you worry about him? Well,

Lea 37:52 I'm gonna go with the second part of this because I feel like I've already addressed like the first part of this question, but I don't really worry about him. Like at all. It's always I know, you and dad worry about him all the time. Because it's like, what if he's not bolusing? What if he's really high? Like what's going on? But I'm just like, whatever, you can take care of himself. You won't let him die. It's okay. There's a hospital down the road, he'll be fine. I mean, I probably should worry just a little bit more than I do. But it's just, it's part of my life. It's part of his life. It's just, it's something we have to do. Well, I

Stacey Simms 38:23 think what we tried to do was to make you aware, but not to make it your responsibility. I just never felt like it was your responsibility as a kid, everybody. And if you remember when he got on the bus, he was in kindergarten. So you were in fourth grade. And people a lot of people said to me, Oh, well, it's what a relief that he's on the bus because even though you can't be with him, Leah's there and she can take care of. And I never felt what I told you at the time was, you don't have to worry about his diabetes, just take care of him as a sister and brothers should take care of each other. We told him that to like, if somebody's picking on you, he needs to stand up for you. And vice versa. If you get sick, he needs to holler for help. You know, it's just that kind of stuff. It was never diabetes specific. And I know you guys looked out for each other all the time, or didn't you sit next to each other all through elementary school?

Lea 39:08 No, for one grade,

Stacey Simms 39:09 I think Did you really say that? I was kidding. No,

Lea 39:11 I think it was no, I remember because I was in like fourth grade. So I was I was like, slowly like into like the cool part and like the back of the bus. And I was really excited about it. Because like me and all my friends. We sent like the ferry back and it was like, Oh my gosh, we're so cool. We sent back the bus. But the bus driver, it was Ben he was in like second grade or like, I

Stacey Simms 39:30 don't know, I remember this. This was in kindergarten. We foster going to school to major sit together.

Lea 39:34 He sat in the very front row, right? They were terrified right behind the bus driver because they were like, what if he like passes out? What if he goes totally insane where he doesn't have any food. And so they made me sit with him? Because I was at SR and like, I knew that they were olders I knew it was going on and I could like call like my mom because I knew your phone number. And I was very I was very upset. But you did

Stacey Simms 39:56 that for like a week or yeah, I've been told Does Yeah, there was no, yeah. And then you were like, Mom, we need to address

Lea 40:04 this. We have an issue. That's

Stacey Simms 40:06 great. I forgot all about that. And he was happy to see you go to Yeah, we

Lea 40:10 were both like, Go away. Get away from because my brother like he couldn't talk to females on the bus because they're like, why is your sister with you are like really awkward because like, he was like in kindergarten and I was like a cool fourth grader, not really. And so, and I was just upset because I was like, I want to go sit with my friends. Now. I don't want to do my little brother like ill.

Stacey Simms 40:30 And on that note, thank you so much, sweetie. This was great. No problem. You're listening to Diabetes Connections with Stacey Simms. I am so proud of her. Even though I was biting my tongue a bit. I mean, we explained diabetes a lot with her. I am sure you know that, you know. And yes, she knows an epi pen and glucagon are not the same thing. But wow. That was that was nice for me. That was really great to talk to Leah. All right, let's go back to me and Slade. And when we left off, we were started to talk about how we try to make diabetes fit into our life, rather than making life revolve around diabetes. Before before we left the hospital, though. We had a long planned event with our congregation. That that year that sum