Diabetes Connections | Type 1 Diabetes

The T1D news show you've been waiting for! Long-time broadcaster, blogger and diabetes mom Stacey Simms interviews prominent advocates, authors and speakers. Stacey asks hard questions of healthcare companies and tech developers and brings on "everyday' people living with type 1. Great for parents of T1D kids, adults with type 1 and anyone who loves a person with diabetes.
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Now displaying: Category: family
Dec 5, 2023

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 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 summer, we had also decided to help start our temple, right. That was that summer and then this this winter, this happened. But we had a an ice skating. I had planned an ice skating event in downtown Charlotte for the Sunday the day after Benny was diagnosed. So we were still in the hospital. And we talked about it and you said you should go right. And I didn't take Leah. And so you went to the hospital that day, we traded off. And I took Leah to the ice skating rink and I was really nervous. And I was really kind of upset about leaving him in the hospital. I'm so glad I did that. I'm so glad I did that. Because it showed her that life goes on. It kind of convinced me that life goes on. It was a great fun event. And our friends and our community were amazing. They were just amazing. It was so supportive of me. And they made sure we had fun. It was great. I'm so glad we did that. That was cool.

Slade 42:17
Yeah, I think that kind of sets or maybe not on purpose, but kind of set the tone for how are you we're trying to normalize we we work really hard and normalizing our lives. In fact, we live our lives first and treat diabetes second, almost, right, because it's just part of what you have to do. It's kind of like you have to put your shoes on if you're gonna go outside, right. So you have to treat your diabetes when whenever you're out and about so. But I think that kind of set the tone for it, right? I mean, because you can you can get into a dark place if you don't.

Stacey Simms 42:50
Well, and Dr. Dr. V. also told us probably that day, or the next day, don't buy him a pony for checking his blood sugar. Right. Don't reward him unduly because this is not going away. Yeah, it's not like, you know, oh, boy, I

Slade 43:04
think you started looking at ponies

Stacey Simms 43:06
I would have looked at I was looking at Porsches looking at everything. It's really funny. You know, it's it's interesting to when you talk about life goes on. I think we put him back in daycare, right? Three days later?

Slade 43:19
Well, we're very fortunate. Was it three days high? It

Stacey Simms 43:22
was very soon, probably within a week. And we were lucky.

Slade 43:25
But we were very fortunate in that the people who are the managers at the daycare center, had had some experience, and then took it upon themselves to go and get more training. Yeah, it was crazy. So we were really fortunate, but that that wasn't common than it was only 10 years ago isn't common, but it's very common now. So I think the challenges that people have about daycare are they're much easier barriers now than when, even just 10 years ago.

Stacey Simms 43:56
I would say that there are more resources to help. But I think that daycare is a huge challenge for a lot of people. I don't know how lucky we were.

Slade 44:06
Well, no, I don't disagree that it's a huge challenge. But it's there are more and more kids that are diagnosed that come through the doors at daycare centers, and they are their experience level is much higher than it was 10 years.

Stacey Simms 44:19
Well, what happened with us was there was a family right before us with a little girl and the mom was a teacher and a nurse. It was crazy. So she had made a whole guide book for them and came in and trained a few people. And so when we brought Benny they knew more than we did I wanted him to sleep there. I kind of did no no. And and Rebecca who was the manager who really just became part of the family for a while. And one or two of the teachers, as you said they did more training. I sent them to one of the JDRF training days and they learned along with us they were absolutely amazing. Then that little girl moved just like three days after we came back from the hospital so they weren't even there. And then the other thing I remember, I should probably stay chronological but I'll skip ahead We had a planned trip with my friends, my college roommate with Beth and Dave, to Las Vegas in.

Slade 45:06
But you know, back to the daycare thing, I think the key, the key to that is, and it's kind of the way we've always dealt with it is, our objective is when we put our son in the care of somebody else, particularly early on, our objective was to make them feel as comfortable and as confident as possible, that they that they could take care of them there or, you know, we didn't put pressure on them to say, you know, you were worried you're not going to be able to, or we were scared parents, we let them know that, you know, it's if you have to dial 911, you dial 911, it's okay, you do the best that you can with the tools that we're giving you and the tools that you have. And I think that that's, that's a hard hurdle for people to get over. But I think if you get over that, you get a lot more help. Right, and you get a lot more people who, when they're when your child is in their care that they feel confident, we all know that feeling confident, no matter what you're doing, helps you perform better. So we really worked hard at trying to instill confidence in the people that were at times across the years taking care of our son.

Stacey Simms 46:16
I think we were also the beneficiaries in a weird way of less or no social media. You're not on Facebook a ton, and you're not in all these diabetes groups. But I think if if I had been when Benny was diagnosed, my outlook might be different. Because some of them have 1000s and 1000s of people in them and everybody's experience is different. And you know, it is on Facebook, you only see the best and the worst. And people post a lot of nightmare stories that other people assume are the norm, and they're not. And I think I would have been more frightened, I would have loved the support. I mean, we had nobody up here for the first couple years. We didn't know anybody. But I think that that that has added to I don't want to do a whole thing on social media here. But I think that has added to some of the fear was,

Slade 47:01
I think that and because social media wasn't as prevalent as it isn't, it's the same thing, right? You believe half of what you hear and less than what you read, right? I mean, it's you have to make decisions based on your own experiences. And it's okay to view other experiences and see how they might, might influence what you're doing. But you can't, you can't say it happened to that person. So it's going to happen to me. Exactly.

Stacey Simms 47:26
And I will say he was great. I mean, he had highs, he had lows, he was always safe and happy, which as you know, if you listen, that's my goal is not perfect, but safe and happy. And the one time he went to the hospital was Was he he just got his thumb caught in the door. You remember he did

Slade 47:41
the same thing that other people do at daycare, they get hurt falling down, you know, somebody threw a block at his head, right? I mean, that's the same kind of stuff. And you

Stacey Simms 47:51
needed stitches. That was the one thing. And I was so nervous, because that wasn't too long after diagnosis, maybe a couple months, and I'm still nervous, because my oh my gosh, how are we gonna manage diabetes? Fine. It

Slade 48:01
was fine. It was easy.

Stacey Simms 48:02
It was easy. So the next big thing that happened in terms of life goes on was we went to Las Vegas with my college roommate. And I called my mom because she was going to come watch the kids and my parents lived in Florida. And I said, you know, I don't know if we should do this, you know, should we stay? And life goes on. You have to go you have to go. She said, You know, this is not you know, I'll do it. I'll do it. So as we started talking about she said, but I can't give them a shot. I got it. And you know what? I think she would have if she had to she would have right? Yeah. But we were very fortunate one of the girls from daycare, who was as she was trained to be a nurse, right? She was nursing student, Kristen. She was so she came over. I met her she stayed here. But she came over and did all the insulin at the weekend. And you know and mom called us a ton we were in was the Aladdin was it? It was it was the end of the Aladdin right? Because they

Slade 48:59
Yeah, it wasn't. Oh, yeah, it was yeah, they return it they were tearing

Stacey Simms 49:03
down around us. And so I remember distinctly like taking a call from her getting in the elevator on the Aladdin and losing the call. And then she called me back. So when we when we mean it, but we had a great time.

Slade 49:15
Was that before the show we went to what show the show when Dave

Stacey Simms 49:19
No, that was that was months after the show was the following weekend. It's what you tell us. Okay, so when you tell I'll tell the story. So one week after diagnosis. We're so fortunate. My brother in law David Slate's brother says four older brothers. And David is closest in age to him. So David was staying us for like a month after Thanksgiving. It was great. He was in between jobs. And he's just so close to my kids. It was wonderful. Unfortunately for him, he was here for diagnosis. So we had tickets to spam a lot. Me and you that following weekend. So again, David's like go go I've got it. I mean, David knew just as much as we did at that point. Yeah. So we get three numbers into spam a lot. I mean to know if it was that lady of the Like, I don't know where that is, or maybe I made it up. And, you know, in the phone rings, so you go out to take the call and like 15 minutes later yeah, it wasn't because I saw three numbers I think you saw like, and I went out to see what was going on. And he thought, you know, when you think about how you dose a little kid, he was 27 pounds. He was 23 months old, and he got like little puffs of insulin. But we were using syringes, right? So he would get like a quarter of a unit or you tried to estimate a half a unit and I think he was supposed to get a half a unit and David gave him six units or something like that. Or two, you couldn't have taken two units. I mean, he had this tiny little dose and David thought he gave him four times as much right? So we couldn't figure it out. So we just said forget it. We went home. As I remember

Slade 50:43
on our way home. We were driving home and he had it under we never stopped him. Did we? Yes, of course. We

Stacey Simms 50:49
came home. Okay, we we didn't come home. I thought we went right to the NATs house. Okay, so he's but But what happened? Is we checked or he checked. Isn't that funny? I can't remember either. We're getting old honey. So he checked or we checked and his blood sugar never felt right. He was perfectly fine. He was like, I'll make it up. He was like 150 all night. I mean, never fell. So he couldn't have possibly either do injection? Or he never miscalculated, right? Or, or Benny snuck a pizza in the middle of the night that we didn't know about. And so we were on our way home, right. And a friend of ours had had a holiday party going on that night. We're like, I will just go there

Slade 51:22
just fine. So the we left the show early, right. I mean, we're 20 minutes into the show. We laughed. We're driving home talking back and forth with David and realized he was fine. So we kept going went by the house and went to a friend's holiday party.

Stacey Simms 51:35
We're terrible parents. No, we're not. I don't think we're gonna terrible parents either. That's really funny. Yeah, and that we never saw spam a lot. No, I still haven't seen it.

Slade 51:48
I mean, I want to I don't know if I could bring Benny

Stacey Simms 51:55
All right, um, I promise we won't go year by year, day by day through the 10 years. But just a couple of quick things about the Look at me. Like, are you sure?

Slade 52:06
I don't have a good enough memory to do that, please.

Stacey Simms 52:10
Benny, God has insulin pump. We talked about that with Dr. V. Right from the beginning. And he got his pump. We went to our educator to Lynette Right. And, and we said, I remember saying give me the one that's easiest for me to use, and will be the best for him. Because I was really scared of how complicated it was gonna be. And we wound up with the atom is 2020, which is what they had back then. And I showed it to Benny, and he threw it across the room. Got

Slade 52:40
your hand and chucked it.

Stacey Simms 52:44
Maybe this won't work out so well. But he was two and a half. You know, we kind of explained to him what the deal was. And you know, this will be a big shot every three days. But not all the shots in between that by this point. He didn't care. You could give him a shot.

Slade 52:55
He would just stick his arm up like shot, he raised his arm you give me I put his arm down. He

Stacey Simms 52:59
didn't care at all. At that point. He was so so good. And so used to it. But that night when he had the pump, because we had the sailing trial for a couple of days, he said, I said do you want it? I didn't know he was gonna sleep in. So I kind of said, Do you want me to take it off? And he said no mine. And that was it. He loved it. He's just he wouldn't give it up after that. So that was really good. And we had a little trouble with the very first inset we ever did. We had a capillary, there's a lot of blood member and then we weren't sure it was going to work. And we like geniuses, we decided we were going to go away to start the pump. So we went to my parents house where this was in the summer. So you I went to my parents house for a week, because when you start an insulin pump, and they probably still do this now you have to check every three hours around the clock for the first couple days to get the level, you know, close to right. I'll go with, I'll stay with my mom. My parents spent the summers in New York at that point. I'll spend the summers spend the week in New York. And then my mom can spot me with the kids. It'll be great. I'll sleep when I sleep. And you had a golf tournament with Bill in Vermont, in Vermont. And I said, Oh go I can do this. Go ahead. And you know, I'm fine. I'll be with my parents. So I remember thinking when we first had that bad inset, this isn't I'm never gonna get on a plane. This is not working. And I remember we changed it and he was, you know, we've checked in right before we got in the car to go to the airport. And luckily it was fine. So I was much calmer. We were crazy to do this

Slade 54:20
as well. And I remember I was in Vermont and I don't know if I think I was supposed to pack up the diabetes supplies.

Stacey Simms 54:29
I don't know. That guy was yes, you packed all the diabetes supplies and I for the record. Slade is fastidious, he is an excellent Packer. Usually what happens is I put out clothing and then you pack it. Yeah, I mean, he's really, I would trust him more than myself in terms of remembering things. So I'll give you that much credit. Yeah, well, you blew this one. Oh, I forgot to add

Slade 54:51
the cartridges that you refill and then put back in the pump. And I'm in Vermont and you we're scrambling, we're on the phone, you're scrambling trying to figure out what to do. And Bill had a good friend whose son had type one. And he was on a pump. We had no idea if it was the same. But like, he calls them at like eight o'clock at night, we go to his house, he gives us a couple of cartridges. I mean, it was really, and we were ready to drive back to Manhattan, right? Or back to New York, to bring it to you. And you guys had figured out another way to Yeah,

Stacey Simms 55:27
but it was really funny. Because again, before Facebook, yeah, I probably could have put out a message and said, Does anybody have this within 30 miles and somebody would have helped me out. So what happened was, we went to change the cartridge, and I'm all proud of myself, because I've got it all laid out, and I'm calm. And so we had a good start to the pump. We really, we didn't need a lot of adjusting for whatever reason the dosing worked out pretty easily pretty quickly. So when I went to change the cartridge, I was feeling maybe overconfident. So I had everything else spread out everything right. And I realized where the cartridges were the cartridges. So I called our endocrinology office, and I called our educator and the endocrinologist called back first and said, You need a luer lock needle, and what the heck and you can't get it at a pharmacy. So my dad is gone. I'm going to the hospital. And he goes to get the luer lock needle so he can say you can screw it on to the cartridge and I had insulin I had an insulin vial. So then Lynette our educator calls me back, she says, We're gonna MacGyver this thing. And she teaches me over the phone, how to, you know, open up the cartridge had to make sure that you have enough space in it and and then we just injected the insulin and it was a regular needle. So she was really helpful, and she was so happy to do it. She was fantastic. I also had called the Animus, and they couldn't do anything that night. But the next morning, they came to my mom's house in rural Westchester County, which if you're not familiar with Westchester County, there's like old she is less than I said rural Westchester County it is what is it? It's not like there are farms there. I mean, they're like Ralph, Lauren owns a farm. But what I mean is they're tiny roads, they're not well marked. I can't say that. It's

Slade 57:11
like any other street it has. Your house has a number in his street name, I find it to be very confused. Like it was unmarked land and her whole western neighbor fought

Stacey Simms 57:20
with machetes to get to my mother's. I was impressed that they came over the next morning, and they gave me different cartridges, different samples. They were great, you know, the local rep came out so that I was, you know, I'm forever grateful for that. And God bless my dad, he found that that Laurel law needle, which we never use, and I carried for years, I probably still

Slade 57:40
have it the cap and we were in the car ready to drive. You picked up the cartridges. And we were on everyone's credit

Unknown Speaker 57:45
for that. Right? Well, I

Slade 57:46
just want to say that we were in on the conversation. We didn't just ignore that something was happening.

Stacey Simms 57:56
But I'll tell you what I learned from that. I always you know, I never like when mistakes are made. But you that's when you learn that you can do anything. Right? Because you just need help. You need to stay calm. I'm sure it was totally calm. And, you know, you get through it. And I realized that, you know, we could we could do this. We could be okay. We always could have given him a shot.

Slade 58:15
Right. I mean, that was always an option. It's still an option now. I mean, he's still sometimes today you'll take a shot. Yeah,

Stacey Simms 58:20
yeah. But for years, he was terrified after he started the pump. It was amazing. He got frightened of injections very quickly. Yeah. And

Slade 58:28
he started to recognize what they were. You know, when he was 19 months old? They didn't know Yeah. First couple ones are like oh, and then after that he would just stick his hand up in the air.

Stacey Simms 58:37
Literally. Yeah, that was funny because he didn't want to stop what he was doing. Yeah. You'd be eating

Slade 58:41
with one hand you're giving them a shot and the other hand well

Stacey Simms 58:43
and the other arm the other arm. He's ambidextrous was helped with a lot of things because you could check his blood sugar as long as he didn't have to stop playing. Right? Although you know what? I didn't mention that I should the first week almost the first two weeks I always say it was crying, sweating running because he did not like injections for those first two weeks and I just remember being heartbroken every time I had to do he would cry we had to hold him it was awful. There was a bit of

Slade 59:09
holding him down

Stacey Simms 59:09
I was so sweaty it was like so stressed sweat

Slade 59:14
the insights were holding them down what we did in is but

Stacey Simms 59:16
no no the the injections though the first first injections and then the inserts were the same way. Yeah, he still doesn't know the inserts are still scary to him 10 years later I think it's just that but he does it himself. I mean he does it you know it's it's just one of the more stressful parts you can say whatever you're thinking given me a smirk

Slade 59:34
just mother might baby I'm a little bit that's a little bit.

Stacey Simms 59:36
Well, you know what, and let's talk about that. Because I think we're really good team. I baby a baby both kids for sure. I definitely baby Benny when it comes to diabetes, I will change his cartridge. I will check his blood sugar, you know, whatever. And you do it yourself. You're on your own. I think it's a good balance. I know he can do it when he's away from me. We don't have to have it out because I know you disagree. But I think that's healthy. A lot of people feel the same way.

Slade 1:00:02
Well, I know, I don't, I don't know if I can classify it as healthy or unhealthy. I would just say that listen, at some point, you're not going to be there. I'm not going to be there. You know? And, and yeah, he has great moments where he does a great job of paying attention and taking care of himself. But the sooner he does that, the better. So I'm, you know, plus, it's part of the way I was brought up, I was brought up much more independently, where whatever I had to face personally, I had to face right. So we're a little bit on the opposite end of the spectrum, when it comes to,

Stacey Simms 1:00:40
we were brought up pretty differently. I mean, loving parents, great families, slightly different parenting styles and five boys versus two girls. Yeah.

Slade 1:00:50
You know, I'm, I just think he needs to take care of himself. And he will, he will find a way to do as little as possible. But that might just be a, you know, my 12 year old kid.

Stacey Simms 1:01:04
I think a lot of it is, but I you know, I definitely willing to admit that I, I baby him. I think though, if I didn't feel that he could do it, you know that I would feel differently. So let's talk about some of those milestones, because we, you know, we're not gonna go 10 years, year by year by year, but going to kindergarten to me, when Benny started kindergarten was stressful for me. I was really worried about it. But he was the only kid was type one in the school at the time. And we had to go to school, we had to look at the routine, we had to figure out what he was going to do. And it worked out really well. There were some bumps, but every year we would go and talk to the teacher talk to the nurses, we only had a part time nurse every year.

Slade 1:01:43
Yeah. But I think the key there again, was we presented the situation in a way where we try to instill as much confidence in the people that we're going to have to take care of them that the principal bought in teachers bought in you know, we didn't make them feel like, Hey, you have our child's life in your hands. And if you mess it up, right, we just empowered them to feel confident about I think that that makes a huge difference. It continues to make a huge difference.

Stacey Simms 1:02:15
We were also adamant with Benny that he learned I remember telling him in preschool the year before kindergarten, you know, we go to kindergarten big kids check their blood sugar themselves. And he was doing everything himself when he went to kindergarten, obviously needing adult supervision, obviously with someone looking over his shoulder. But from that from kindergarten on when he was in school, he did it himself.

Slade 1:02:36
I think from the time he was probably I would even say maybe as early as eight. He could do everything.

Stacey Simms 1:02:43
Oh, yeah. Oh, yeah. Well, fourth grade, they barely looked over his shoulder.

Slade 1:02:48
But I mean, he could do everything from Phillip cartridge restart as pump. caliber, you know, calibrate. He could do it all? Yeah. So well,

Stacey Simms 1:02:58
diabetes camp was a big part of that, too. Yeah. Yeah. I mean, he knew how to do it all but I think wanting to do it and be more independent and especially within sets that came with diabetes camp. That's funny story. Because Benny Benny went we have a little Diabetes Day Camp around here that he went to when he was like three or four years old. And then the year he was turning seven. They said, Oh, you're gonna go to the sleepaway camp. He was like, Yeah, I'm all for it. Well, it turns out, you have to be eight to go to that camp. So I called them up and they say, Oh, we thought he was older because he's a big kid. He always looked older. I said, Well, can we send him anyway because he was ready to go. And they make exceptions. So they sent him and that was the best. I mean, it really has given him a great community, because now he goes to regular now he goes to regular people. That was a next year he went to die. We just came for one year. And our daughter, I've told this story before our daughter has gone to regular camp, sleepaway camp for four weeks for a long time. And she would come home every summer and say, Benny is gonna be great when you're eight and you can come and I was always like, no, he's never going, he's not gonna go. But he went, we worked it out. We worked. We started working with the camp in January. He went in July. And this camp has a medical facility. They have doctors, nurses, they're not trained in diabetes, but that I don't think I would be comfortable sending him for that long without that there. But while he's at camp, he does everything himself. And sometimes he messes up and sometimes he doesn't. So that's I always the first you always have to hold my hand the first two or three days of sleepaway camp, I'm always like, Why did I send him? I'm so selfish. I can't believe it. I broke both. But He only says fine. They called me once. He called me the first. They were like, Hello. Yes. I have a question about Benny. You know, and I'm like, ready to throw up? Yes. What kind of do what do you like a little rich under? I thought he was like in the hospital with DKA.

Slade 1:04:47
Well, all of those moments where and pieces of experience that allowed him to be more independent have just been really good.

Stacey Simms 1:04:57
Yeah, right. Elementary School. went really well. I mean, he was really in a groove except for like some travel and some summers and some incident but we weren't going year by year. We're not. But I just want to mention where we are now. Let me lead you here. I'm the professional interviewer. Lead me. I would say that so far, middle school has been a little bit of a challenge.

Slade 1:05:18
The there's a lot more distractions. Yeah,

Stacey Simms 1:05:21
it's a huge school. And the the hormones are going bananas. So the insulin levels are going bananas. I mean, I've give him so much insulin right now gives himself so much insulin. And, you know, it's been a it's been a challenging transition as that.

Slade 1:05:38
I think all transitions are challenging, right? I mean, it's a greater level of independence, greater level of understanding, and he's got to care, right? And it's easy to get distracted. He's a 12 year old boy, it's even easier to get distracted. Right? So it's not like he doesn't know, yeah, put in under pressure, he could do whatever he had to do to take care of himself. But if he knows he doesn't have to think about it, he doesn't think about it. So

Stacey Simms 1:06:03
I opened this up to some of my Facebook friends to see if they had any questions for us and our wisdom of 10 years, your

Slade 1:06:09
Facebook friends, we have wisdom. And you have Facebook friends.

Stacey Simms 1:06:14
So Anne wants to know, she says, I would love your daughter's perspective. And I'm going to ask Leah about this. But I'm going to turn that and say, What about the attention that we had to give him and how we handled that with Leah? Because I have felt very guilty about that over the years.

Slade 1:06:34
You were much more aware of that than me. But I don't know.

Stacey Simms 1:06:43
Well, I think it comes in part because I do much more with with the diabetes in our house. I mean, not that you we were very equal team for a very long time because of our schedules. And even now, I mean, I could go away tonight, no prep, maybe I will for a couple of days. Yeah. And I wouldn't have to worry that, you know, that's great. I wouldn't have to worry, you could do everything. But you don't fuss over it as like, as I do. You know, I would definitely give him more attention. And I think what I've done over the years is just just explain to him. That's just my attempt

Slade 1:07:14
to make it norm.

Stacey Simms 1:07:15
I know, that's just who you are. I'm not criticizing. There's many other things to criticize. And so I've tried, I've talked to her about it. I've just straight up diabetes requires more attention.

Slade 1:07:25
Yeah. And as she got older, she recognized that and she you know, it bothered her. Yeah, yeah, I think he went through some pieces of it that really bothered her. But I think in some ways it kind of helped her grow. I don't want to say quicker, but grow deeper. Yeah, that's right. Yeah. And have much more self awareness. At an age maybe she wouldn't have because you probably would have called her like it did Benny for some other reasons.

Stacey Simms 1:08:01
But I tried to do things like just special things, me and her going away for a week. Right. And, you know, that kind of stuff. And that's always been nice. I think it's also helpful that it's, you know, a girl versus boy. So I can be like, Oh, mom and girl things, you know, we can do weekends away. And that kind of stuff that if I had two daughters might be differently, who knows? Whatever. The dynamics are always different. But yeah, she had a harder time with it when she was a little younger. And she's really solid about the whole thing. Now she gets it. Okay, so Shira writes Another Facebook question here. She says, has diabetes ever stopped or restricted him from doing something he wanted to do? If so, did he fight it or have to give up and accept it? She says she's concerned about her daughter being discriminated against. I don't think there's ever been a time. I will say there are times when we travel, that I I hesitate to disclose because of other people's preconceptions about diabetes. So I usually like to tell everybody, but every once in a while, you'll come across something where they say like don't get on this roller coaster, for example. And they're talking about type two, or they're talking about very, you know, being in very poor health with diabetes. Yeah, see,

Slade 1:09:08
I don't tell anybody unless I feel as though it's necessary or if I'm telling a story or if someone's inquisitive, but when he's doing an activity, he decides he wants to do the activity first. And then after he's decides he wants to do it, we'd say oh, by the way, he has type one. So here are some things he has to

Stacey Simms 1:09:25
pay attention to me. He's played baseball, basketball, right? But

Slade 1:09:29
we don't say hey, he has type one. Can he do this? We say he wants to do this. And we go, okay, yeah, he wants to do what he signed up. He's ready to go and oh, by the way,

Stacey Simms 1:09:35
well, it's always on the form, but we've looked at it looks at the form. The garage is never known. I always have to tell them. I'm trying so what has he done sports wise to did flag football?

Slade 1:09:44
Soccer, soccer for five

Stacey Simms 1:09:48
seasons soccer. He was little flags football, basketball, baseball, baseball for a long time. And then we thought he might do football this year, but he went out for the play. Yes. Very happy about that. So I don't think it stopped that hasn't stopped them. goes to regular sleep awake? He went on the field trip with his fifth grade for three days without us. Yeah. No, I don't

Slade 1:10:06
think it stopped learning anything. No, I just think that you. For us, it's not starting the conversation with diabetes and starting the conversation with is that something that we want him to do? Or we think is okay, or he really wants to do prove? Does she really want to do it? You're not just poking around? And once you, you know, you said, we're gonna start the conversation with that it's part of the conversation at the start of it. And it shouldn't be I don't think,

Stacey Simms 1:10:30
all right, Did we miss anything? Come on. It's gotta be something. Yeah. So I'm just curious to get your take, you know, I've always been really involved, I jumped right in and did the JDRF board and did all this stuff. And now I have the podcast. And, you know, what do you think of all that? I'm either fishing for compliments, or I want you to tell me that it's too much time that I should like, make dinner more.

Slade 1:10:54
Not at all, I think, listen, we we live our lives. And we tell our kids this, every chance we get right if someone's in need, and you have the ability to help you help. And that's what you're doing. Right? It's not about what's in it for you. It's not about why you should do it. It's just if you have the ability, you do it. So I mean, not only do you have the ability, and not only are you helping, but it happens to be a big part of our lives. So there, you know, I mean, it's what you should be doing. I mean, if you have a way of falling into grooves that you're supposed to fall into, right, and you're just in a really good place with it right now. Using your talent as a broadcaster to keep a dialogue open for other people that are experiencing the same things.

Stacey Simms 1:11:46
Thank you. You know, Slade and I met at a TV station and he was the behind the scenes. music instructor you think he got to sit closer to the microphone? You keep leaning back? I hope they hear you. Okay,

Slade 1:11:57
that's because my seats a long way away. She didn't set the studio up correctly, I would have done it very differently. Ah, through.

Stacey Simms 1:12:13
Okay, time to talk to Ben. This was a tough one. Not because we were emotional. But because he would prefer to make chicken noises and play with my microphone, then talk about diabetes. I think that's normal. You will notice some editing here. I did the best I could. But sometimes there was just something wacky going on. And the things I edit out or are just large pauses or me yelling at him, you know, or him like I said, making some some weird noises. I may regret not doing more editing. But I was encouraged by friends and some people that I respect and a diabetes community to leave as much as it is. So here we go. Okay, so stylee stopped you like what do you do? What's your life? Like? What are some things you would like doing?

Unknown Speaker 1:12:59

Stacey Simms 1:13:00
So tell me about acting. When did that start?

Benny 1:13:04
Last year when I went to Camp Coleman. I was in the school, school camp play. And that's where it really started.

Stacey Simms 1:13:17
What was the play? And who did you were you

Benny 1:13:19
Oh, God don't have to say no. You don't have to. It was Larry Potter. I was haggard. So now Hagrid had GERD

Stacey Simms 1:13:28
so they could take off on Harry Potter. Yeah. And then this year in the school musical you got into that alpha musical.

Benny 1:13:33
It's the story of Buddy the shelf. It's the story of Buddy the shelf. It's the story of

Stacey Simms 1:13:43
Okay, so when you're when you're auditioning for stuff to share. When you're auditioning for something like that, I worry about diabetes, because we have to do some extra stuff. You don't really worry about

Benny 1:13:55
it though. I as soon as the show starts, I don't care about it. Well,

Stacey Simms 1:13:59
but I mean, during rehearsals you're on your own during ahead of time. Do you have to think about anything like that do

Benny 1:14:04
do ahead of time I'm, I check my blood sugar before the show. And I also correct or give myself some sugar if I need to. And then once the show starts.

Stacey Simms 1:14:19
Okay, very nice. But when what was interesting about this show is that one of the kids on the tech crew has type one. And he might Oh miles Yeah. And he helped you out before going to help me out. Yeah, before one of the bow was I thought we'd be better to send miles than another kid or a teacher because they might have panicked was miles cool about it.

Benny 1:14:38
Yeah, he was like band aid. You blood check as well. change something or eat something or get drunk.

Stacey Simms 1:14:44
I don't think he said get drunk.

Unknown Speaker 1:14:46
Get it because

Stacey Simms 1:14:47
I got it. But was he? Does that make a little bit easier knowing that he understood? Yes. Yes. Okay. All right. So what stinks about diabetes like what makes you go Oh, All the time besides your mother.

Benny 1:15:04
Okay. So, okay, so it's hard and annoying, and dumb, is stupid. And it can fly because it has Dumbo the elephant. Hey, I'm trying to make this fun. You is making this boring. You you is like, no, no, no, no, no, no, no, no. No. And I'm like, no, no, no. I'm like, yeah, and you're like, done. I'm gonna Yeah. And you're like, you're like,

Stacey Simms 1:15:40
you're all part of the. Alright. I got a question from someone on Facebook who wanted to know if you tell new friends that you have type one, like, right away, which I think I know the answer to but I'm I

Benny 1:15:52
do not tell them right away. But if my blood sugar ever goes low with them only low? I'll tell them and I'll explain needed to them. And then they give me food.

Stacey Simms 1:16:07
Yeah, well, you've a couple of friends in the neighborhood that you've known forever. Yeah, like

Unknown Speaker 1:16:11
Kailyn. Miller,

Stacey Simms 1:16:12
does he know what to do? Or does Yeah, you know,

Benny 1:16:14
blood sugar's low. He went upstairs and KISSmetrics. That's good.

Stacey Simms 1:16:18
And I know one of your favorite things to do in this neighborhood is riding your bike and jumping on a trampoline. Oh, that's fun. Any advice for kids who are newly diagnosed with type one?

Benny 1:16:28
Don't be scared. Or I'm going to find you and tickle you to death?

Stacey Simms 1:16:33
What if they worry that they will be able to do some things that their friends can

Benny 1:16:36
do? Well, then you should stop doing that. Yeah, that should stop thinking about not being able to, and you should do it. Well,

Stacey Simms 1:16:45
how do you do it? If you're worried about your blood sugar? You

Benny 1:16:47
shouldn't be worried? Because your mom is there.

Stacey Simms 1:16:54
Tell me what goes on. Like when you were playing baseball.

Unknown Speaker 1:16:58
My mom was there.

Stacey Simms 1:17:00
Do you understand that you have diabetes? When you think about it. And I assume that one of the worst things that you go through is the annual blood draw. Yeah, blood just scary. Yeah. Tell me about that. When you were little it was really it was

Benny 1:17:10
scary. And one time, they were like sticking a needle in my arm. And it's like, I want to look away but I can't. But I want to look away but I can't. But I want to play but can't.

Stacey Simms 1:17:26
Does it hurt more? When you look at it? It

Benny 1:17:28
hurts more when it's not in? Oh, once it goes in? It's okay. But it's like it punctured his skin like and then it's an unusually cook.

Stacey Simms 1:17:39
We should get you some voice work on cartoons. You'd be good at that.

Unknown Speaker 1:17:45
You need to put all of this. How

Stacey Simms 1:17:47
do you feel when you're low?

Benny 1:17:48
I feel my legs are like not working. And I don't make sense.

Stacey Simms 1:17:55
Have you ever been in a situation at school this year where you've been low and felt like that? Like what

Speaker 1 1:18:00
do you do at school? I can get you sparks very illuminate

Stacey Simms 1:18:09
How do you feel when you're high? Are you high right now that would explain? How do you feel?

Unknown Speaker 1:18:13
I could go Yeah, no, don't

Stacey Simms 1:18:16
go black. I know you don't remember first getting the pump because you were too little. Do you remember throwing it across the floor the first night? Yeah,

Speaker 1 1:18:23
but I remember you telling me Do you remember the little

Stacey Simms 1:18:27
pouches used to have with like the cartoon characters on

Unknown Speaker 1:18:30
them and stuff? No. Okay.

Stacey Simms 1:18:32
What do you think of the Dexcom? Like, how about

Benny 1:18:35
a scaly sometimes, but why is it so good? Because big needle? Oh, putting

Stacey Simms 1:18:39
it on is scary. Yeah, it is kind of critical.

Benny 1:18:41
And Daddy, like you slowly take out the other side. And he like, can't get it out and he's like, then he can't put the transmitter and tear up the other side without breaking my arm, but was

Stacey Simms 1:18:56
unwilling to let me do it. If he does because you're bad at it.

Benny 1:18:59
I'm worse. Yes. They're my bed. Because you go like you go really slowing and really slow. And then you like, in you one time you didn't take it out or you tried to pull it out and you broke my arm.

Stacey Simms 1:19:19
I can't wait till they get that new inserter Okay, let me ask you, what would you tell a newly diagnosed kid who's afraid or worried about playing sports? You play a lot of sports?

Benny 1:19:33
Oh, well, don't don't tell him to not be worried because my first year that was by far the most supportive year I had had with diabetes, especially in baseball. It was that first year I tried. And my coaches were really good. And everyone was just really supportive. That's great.

Stacey Simms 1:19:57
How would you explain it to your friends if you were just you knew Your blood sugar was high and it was making you cuckoo.

Benny 1:20:01
I would tell them and that if I said anything completely Bozo with lithic that it was just the blood sugar talking

Stacey Simms 1:20:10
you would you would make them aware you wouldn't try to cover it up. When you're riding the school bus. Did you ever go low? And if so, what did you do about it? So actually,

Benny 1:20:18
one time my inset came out on the bus and I went to the Buster I mean, I'm like, step on it. No, you didn't. We went we went faster. Is that a

Lea 1:20:31
true story? Yeah, that's not a good story. Why?

Stacey Simms 1:20:33
What's your favorite treatment for low blood sugar?

Unknown Speaker 1:20:38
Does straight sugar

Stacey Simms 1:20:40
really like sugar packets?

Speaker 1 1:20:42
No, like remember to sugar things that Oh, no. The sugar packets I used to buy that ran out of business a glucose powder. That glucose puppies. Those

Stacey Simms 1:20:52
were great. Oh, that's right. I forgot all about that. Okay, so if you can't have those, what do you like? And our dog is here now. Just back juice boxes. Tell me about diabetes camp. Is it? Do you sit around and just say Woe is me? We have diabetes. Can you sing the song? The one that's kind of outdated? Do you remember what I'm talking about? Sing that for me. Come on.

Benny 1:21:11
I'm okay. Our fingers and repeat yawn is sick. We can't eat sugar because it makes us sick. But we're diabetics and will never fail. Because see, Li Na, chariots?

Stacey Simms 1:21:25
Tell me before we go about regular camp because a lot of kids with tripe. Whoa. Alright, let's talk. Regular camp

Benny 1:21:31
is fun. And as long as people somewhat know about your diabetes, you're okay. But don't go if you're newly diagnosed. Why? Because you want to get used to it before. Before you like go on an adventure with it.

Stacey Simms 1:21:49
What do you have to get used to? Everything? I'm asking for real? Like what do you want to

Benny 1:21:54
get used to changing your own insets because people will not do that for you. Especially a diabetes camp like Jeffrey wouldn't me you wouldn't do it for me. Right?

Stacey Simms 1:22:04
But if you were newly diagnosed, they would help you diabetes camp. They just know your shenanigans. Jeffrey's known you since you were little. Yes, those mothers your diabetes educator.

Unknown Speaker 1:22:14
She is.

Stacey Simms 1:22:17
Um, what else do you do? Because when you're over here, up here, the dogs that have microphones. When you are at regular sleepaway camp, you have to change your insets change your cartridges, everything pretty much right? Mm hmm. Is that ever scary? Or is it just part of going to camp?

Benny 1:22:31
It's just part of going to camp sometimes it's scary. But other times it's fun.

Stacey Simms 1:22:36
Is it worth doing? Like? Is it worth all the work to go to camp? Yes. What do you do that you like it so much? Like why? Gaga? Oh, so what are things you like about Kim Coleman's Gaga ball? Tell me about why. So

Benny 1:22:47
it's fun, because there are other better people and it's challenging to win. And you also get to have fun, and it's the most favorite game of all time.

Stacey Simms 1:23:00
Do you get homesick when you're away? Nope.

Benny 1:23:02
People do that. Me too. And I know homesick. I know homesick until the day we come home. Alright, so here's the question. We talked with us because my home is kept coming home away from home. I'm homesick when we get home.

Stacey Simms 1:23:15
We talked about this when we did that presentation in Atlanta. What are some dumb things you've had to deal with? That people who don't understand diabetes have

Speaker 1 1:23:21
asked you? Why do you have a phone? Why are you a robot?

Stacey Simms 1:23:26
What do you tell them? Like do

Speaker 1 1:23:28
they really think it came from alien world?

Stacey Simms 1:23:31
Do they think your phone's pumpers? Yeah, they

Benny 1:23:33
think my mom has a phone and when they think when they say Why do you have robot stuff on you? I say I come from a different world. Do you ever

Stacey Simms 1:23:41
just tell them straight up? Once you do when you were little I did when I was little

Benny 1:23:46
but like now I just joke around with them. And it's like, I came from a D from planet. I am here to the

Stacey Simms 1:23:56
What about Vice illustrate with the nurse at camp? Oh

Benny 1:23:58
God, no, you can do it right now did it? So

Stacey Simms 1:24:01
my understanding is that Benny whether there are great medical staff at this camp, but they don't specialize in diabetes. And so there was a nurse who saw you eating ice cream. Were you asked to eat ice cream. Oh, I

Unknown Speaker 1:24:13
asked if I could have smart pop. Oh, and

Stacey Simms 1:24:15
she said what's your A1C? And you were like, why? You were like nine years old? Right? So what did you do?

Unknown Speaker 1:24:24
I didn't know. Remember? No, that's what I did. Oh, you

Stacey Simms 1:24:29
see you didn't know your A1C because I didn't. So did you eat to smart pop anyway? Yeah,

Unknown Speaker 1:24:32
I was like, not once.

Stacey Simms 1:24:34
I think you found another nurse. Right? I remember when the nurses were involved in popcorn. Were you in the infirmary? Yeah. Okay.

Benny 1:24:41
Tell the other one about the sugar. I don't remember that one. Okay, so, um, I want it smart pump again, because smart pump is the best. And she said how much sugar is in it? And I'm like, and I said, I don't need to know how much sugar is in it. And she's like, yes, you do. It. And I said, No, I don't I need to know how many carbs and she's like, who's your doctor? They're obviously not telling you right? Yeah, that's right.

Stacey Simms 1:25:07
That's right. Well, my favorite was when one year I said something to them. No when your the nurses sent me a text, and they said, when you grow up to you that you could be a diabetes educator, you knew so much indicator and you said, I

Speaker 1 1:25:22
already have a diabetes educator. Because that was because you basically

Stacey Simms 1:25:25
are you feel you're gonna be okay. Yes. When you grow up you're gonna be actor. What kind of actor like singing dancing, action movies. All of the above?

Benny 1:25:36
All of the above, minus gooey Tiki movies and Macbeth.

Stacey Simms 1:25:46
So no kissing and no Shakespeare. No, other than that you're okay. Well, Benny, it's been a great pleasure talking to you today.

Benny 1:25:54
I didn't know this was fun. I get a ruin the whole show.

Stacey Simms 1:25:57
I'm not sure we have anything we can use. But I appreciate your time.

Unknown Speaker 1:26:00
You appreciate the thought.

Stacey Simms 1:26:07
You're listening to Diabetes Connections with Stacey Simms. He is exactly the same, right? He's exactly the same, just with a deeper voice. Honestly, what a joy for me to listen back to that to Benny Antalya. And to my husband, who doesn't really talk that much about diabetes going to mom's night out. He's been at all the moms night out events. He has loved it. It's been wonderful for me to watch. He's asked some questions of people he's spoken up. It's been really cool. But that's the only time that we've ever really sat down and analyzed diabetes in that way. And by the way, if you have a podcast and you have kids, make sure to record them. As soon as you start your podcast. It was just such a cool time capsule. For me to hear to hear both kids and Leah is exactly the same to me. She's got the same mannerisms. She speaks exactly the same. Her voice is a little younger. She was already in high school at that time, but you know, she's on her own. She's an adult with a job but not in my house, which is good and sad as well, but she's pretty cool kid. Alright, if you liked what you heard, please share this episode. It's an unusual one. I'd love to see what the reaction is. And please join me for mom's Night Out Charlotte in February, and our other three stops in 2024. I will link that up in the show notes as well. Thanks to my editor John Buchanan's for audio editing solutions. Thank you so much for listening. I'll see you back here soon. Until then. Be kind to yourself.

Benny 1:27:30
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged

Transcribed by

Aug 22, 2023

It's one of the biggest milestones in my family’s experience with diabetes. Our son is off to college! I asked Benny to come on and talk about what’s on his mind, how he’s feeling and to answer your questions, including if he’s going to tell people he has T1D.

We also answer your questions about overnights, how we’ve prepared, our plan for share and follow and much more. I can’t believe this day is here!

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

Our previous episodes with Benny:

Don't miss Moms' Night Out - our next stops are in Texas, Rhode Island, & North Carolina

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Drive research that matters through the T1D Exchange

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Reach out with questions or comments:



Nov 22, 2022

Stacey talks a lot about her son with type 1 but, as many of you know, she also has a daughter who doesn’t have diabetes. What’s it like to grow up with a sibling who gets more attention for something you can’t do anything about?

Lea was five when her little brother was diagnosed – she’s now 21 and she has a lot to say.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

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Episode Transcription Below (or coming soon!)

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*Click here to learn more about OMNIPOD*

*Click here to learn more about AFREZZA*

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Jul 5, 2022

Her daughter was diagnosed during the first year of COVID.. now Katie Roseborough is looking to help other moms by sharing her story. Katie’s started a podcast; she talks about why and shares stories about her family’s experience. She has three kids, only one with type 1.

More about Katie here

Book presales are open! "STILL The World's Worst Diabetes Mom" will be out this fall. Order now and use promo code "Earlybird" to save $5!

You can also save $5 on the first "World's Worst Diabetes Mom" at that link, just use "Earlybird" at checkout.

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

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here


Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!

Episode Transcription Below (or coming soon!)

Please visit our Sponsors & Partners - they help make the show possible!

*Click here to learn more about OMNIPOD*

*Click here to learn more about AFREZZA*

*Click here to learn more about DEXCOM*

May 4, 2021

It's hard to imagine having a child diagnosed with type 1 diabetes during the COVID pandemic. Most of us rely on community support and in-person meet ups and events to help support and guide us during that first year. But when you're diagnosed during a time of isolation and social distancing, what do you do?

Andrew & Emily Hollis join Stacey this week to share their story. Their toddler, Addison, was diagnosed a year ago, a time when only one parent could enter the hospital with her, due to COVID restrictions. The Hollis family connected with others online and even created a line of 3D printed items to help diabetes technology stick better on the body.

Deck my Diabetes website

Andrew testing Deck My Diabetes gear (video mentioned in the episode)

In Tell Me Something Good we're looking ahead to in person events

Chris Ruden's new book "The Upper Hand"

Stacey will speak at Camp Nejeda's Thrive & Survive event 

looking ahead to in person events and a new book to give you the upper hand.

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

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here


Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!

Get the App and listen to Diabetes Connections wherever you go!

Episode Transcription below 

Click here for iPhone      Click here for Android

Stacey Simms  0:00

Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom help make knowledge your superpower with the Dexcom G6  continuous glucose monitoring system.


Announcer  0:24

This is Diabetes Connections with Stacey Simms.


Stacey Simms  0:29

This week, having a child diagnosed with type one during the pandemic happened to the Hollis family. Addy was just three years old. But her parents couldn't bring her to the hospital together because of COVID restrictions.


Andrew Hollis  0:43

We both walk into the ER, and there's the guard at the door and he's like only one adult. And I'm like, this is my kid. I need to be here. This is my daughter. But I also knew that my daughter needed her mom, and I want it to be there for my wife as well. And I know I've tried to put up a little bit of a fight and he's like no one adult,


Stacey Simms  0:59

Andrew and Emily Hollis join me to talk about their daughter's diagnosis, finding their way with diabetes during the last year in isolation and their product deck my diabetes. Oh, and chickens in Tell me something good. Looking ahead to in person events and a new book that'll help give you the upper hand. 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 am always so glad to have you here. We aim to educate and inspire about diabetes with a focus on people who use insulin. I'm host Stacey Simms, and my son Benny  was diagnosed more than 14 years ago, right before he turned two my husband lives with type two diabetes. I don't have diabetes, I have a background in broadcasting. And that's how you get this podcast. If you're a longtime listener, you know, I tell a lot of stories about how lucky we were when Benny was first diagnosed, we had a lot of positive experiences that can help set the tone. And you know, we already knew some families touched by type one. And we met a lot more in that first year in at person events. It's really hard for me to imagine having to do those first months that first year on social media alone. There was no social media at all back in 2006. So you know, it wouldn't have been an option then anyway.

But that is what happened to the Hollis family. Addy is now four. She was three when she was diagnosed back in May. I know a lot of families have had kids diagnosed during the pandemic, we have added quite a few to our local group. And I so admire their strength in dealing with all of this without family or friends who can help in person. Look, the truth is you don't have a choice parents of kids with diabetes. Or if you're an adult living with type one, you just have to jump in and get it done. And the Hollis family did that. But they also found a way to fill a need helping keep gear sticking better with their product with Deck my diabetes. We'll talk about all of that coming up. As always, there is a transcript at Diabetes and I would really appreciate it if you have a moment to share the podcast if you haven't done that in a while. And you know new people with type one you think they'd enjoyed this episode are some of them are tech focused episodes, please share the podcast that is really the best way to help more people find it. Reviews are nice, but word of mouth from you is a lot better.

Alright, Diabetes Connections is brought to you by Dario health. And over the years I find we manage diabetes better when we're thinking less about all the stuff of diabetes tasks. That's why I love partnering with people who take the load off on things like ordering supplies, so I can really focus on Benny, the Dario diabetes success plan is all about you all the strips and lancets you need delivered to your door, one on one coaching so you can meet your milestones weekly insights into your trends. with suggestions on how to succeed. Get the diabetes management plan that works with you and for you. Dario’s published Studies demonstrate high impact clinical results. Find out more go to forward slash Diabetes Connections.

Andrew and Emily, thank you so much for coming on the show. Welcome. I'm glad to have you here.


Andre & Emily Hollis: 4:21

Thank you for having me.


Stacey Simms  4:22

Yeah, we've got a lot to talk about today. I guess we're going to talk about chickens too, at some point. Andrew, I'll start with you. Your daughter was diagnosed just in the last year. Tell us the story.


Andrew Hollis  4:35

Sure. So leading up to diagnosis. My wife Emily, she actually noticed some things in in our daughter and it's got to be the mom thing. You know, she was saying, hey, she's eating a lot. she's drinking a lot and I always chalked it up to she's growing. I mean, there's no history, family history on either side for type one. So we really didn't cross that bridge until maybe three or four weeks into it. And she said, Hey, I did some research on Google. And she might have diabetes, and I was in total denial. And it wasn't until in May, I was at work, my wife sent me a photo of my daughter. And you could just tell she was dehydrated circles around her eyes, white skin, super tired complaining about her legs hurting. And when I got that photo, I immediately called her and said, pack her up. I'm headed home, we're going to the doctors, see if they can get us in today. And our pediatrician got us in almost immediately. It was a Sunday, so it was kind of an off day for them. And we showed up there, they checked her blood sugar and said, go directly to the hospital, do not pass go do not collect $200 go home. My daughter didn't even have shoes on. We were barefoot. We were not prepared. We just rushed directly to the hospital.


Stacey Simms  5:48

Emily, let me ask you, What had you noticed? I mean, it sounds like all of the signs were there. And like most of us, you know, it takes a while until you really let all that sink in and go to the doctor.


Emily Hollis  6:00

You know, I'd call family members and said, you know, something's not right. She's not acting right. She doesn't want to walk in a chicken coop in the morning to let him out. He says carry me. You know, it was just, I knew something was wrong. But I was a little bit of denial as well. Like, I don't want it to be diabetes. And with no family history, I kept telling myself well, you know, maybe she's just studying a flu bug or something. You know, we had COVID going around, and we had been quarantined since beginning of March. And here it is May. And I'm like, it's probably nothing, but we're gonna take her in anyways. And then when they finally told me it was just like the whole world just, you know, came crashing down.


Stacey Simms  6:33

Yeah. Did they test her for COVID? At any point? No, they


Emily Hollis  6:36

did not. Because she never ran a fever. She never had like, any congestion or anything like that. It was just strictly the, you know, let's go potty every five seconds and, you know, drink 30 gallons of water, it seemed like and let you know, it was just non stop. And I was, you know, to the point of frustration I felt bad for but then it's like, after we got the diagnosis, I was like, you know, I probably should have taken her in sooner. Even though the doctors assured me that we got her in there just in the nick of time.


Stacey Simms  7:04

I think we all feel like we should have gotten our kids in there sooner. I have friends who are nurse, right? You know, I have friends who have type one themselves. And that denial is a very, very strong thing. And we just we don't want to think that it can happen to us. So then you're in the hospital. Did you do the basic training there? You know, three days was she at a danger pretty quickly, Andrew.


Andrew Hollis  7:24

So we get to the hospital in what was interesting is being in COVID, lockdown, we both walk into the ER, and there's a guard at the door. And he's like only one adult. And I'm like, this is my kid, I need to be here. This is my daughter. But I also knew that my daughter needed her mom. And I wanted to be there for my wife as well. And I know I've tried to put up a little bit of a fight and he's like, no one, one adult. So my wife went in through the ER entrance. And when they finally got settled in a room she called me and I've been sitting in the parking lot now for almost two hours just worrying my head off just not sure what's going on. And calling friends and family and just about in tears. You know, I'm just telling them, pray, pray hard, because I don't know what's going on with Addy. But we're at the ER, she ended up calling me and said, Hey, they're saying one adult. But bill let us trade off one time per day. The plan at that point was basically to have her spend the nights with my daughter. And then I would give her the reprieve time during the day to go home and sleep and get a shower. We didn't have any clothes with us at the time. So I ran home and started packing an overnight bag and had to hand deliver that to the guard at the front. And then he walked it up to the room for her. It was really interesting to have to take that answer of No, you cannot enter and just have to wonder what's happening. Fortunately, with technology, we're able to FaceTime we were able to talk. And we had a fantastic nursing staff there who actually bent the rules a little bit and said, If you happen to be passing each other in the room, and it takes an hour or two. Oh, that's okay.


Stacey Simms  8:50

That's fantastic. I thought that I was thinking more about COVID after you got home and not being able to be part of an in person diabetes community, but holy cow, you know, to be able to live together.


Andrew Hollis  9:02

Yeah, it was very difficult. Like I said, when we were passing in the room, that's when the nurses took the opportunity to do training with us. Yeah. And so that worked out really well. We actually ended up several days there. I think she was in the hospital for almost four days, when they were doing the training, we kind of stretched that time to be almost three to four hours together. And we would go home, get a shower, get a couple hours of sleep and come back after dinner and then take over for the night shift.


Stacey Simms  9:28

Emily, What do you remember about that time? I mean, learning about diabetes is so overwhelming. I have like some bits and pieces but the whole thing still seems like a blur.


Emily Hollis  9:37

Yeah, I agree. It was long. It was very long. You know just in and out and then you know at night it's like this when I it kind of reminded me a little bit of when I was in the hospital having episodes like you're trying to sleep, they're out poking and prodding you every seems like every five minutes. You're like, you know, this child's gone through enough. Leave her alone for an hour. So you don't really get any rest just like I said like labor and delivery. You don't get anywhere. I've been in hospital. And that was very stressful. You would cry for a dad, he couldn't come up there. And then it I mean, overwhelming. It's just very, it was very overwhelming. Yeah, it's a ton of information. They want you to read all these books and all these pamphlets, and you have gotten zero sleep, you're dealing with a child that, you know, does wants mom and doesn't understand what's going on. Why am I getting poked in the fingers? And why am I getting poked in the toes, and I'm trying to sleep and it was very hard, you know, looking back now, she doesn't really remember a whole lot of that today, which is kind of a good thing. I kind of find that as an answer prayer, because she doesn't remember that traumatic time that she had.


Stacey Simms  10:38

Andrew, do you could speak a little bit to about the the overwhelming amount of information, I'd love to hear your take on that.


Andrew Hollis  10:43

Because I was on the day shift, you know, washing machine, my daughter during the day, I got a lot of interaction with the nurses that were more than just, hey, let me check her blood sugar and make sure she's okay and fix the IV. And there was a lot of conversation, when they presented us with a book and said, Hey, you start reading this, this is good information. And between, you know, the things going on in the hospital, there's no way you can get enough reading and I tried to sit down and read through a chapter and just the medical terminology that's dropped down you having no history for diabetes, and you're learning about aka and you're learning about how to manage blood sugars and how to check blood sugars and what insulin does and how insulin works and how your pancreas is supposed to function. And how a diabetic pancreas maybe doesn't function all the way or at all, and you start getting all of this information piled on you. And then they're like, hey, in two days, you're going home, and you've got to do this and you become almost panicked because you're like, how am I going to manage and I'm sure every diabetic parents been there how am I going to manage this I've had three days crash course on how to be this kid's pancreas and I was not designed to be a pancreas. Definitely was overwhelming and scary. Very scary.


Stacey Simms  11:50

Emily take me through when you went home. What was that like?


Right back to Emily and Andrew but first Diabetes Connections is brought to you by Gvoke Hypopen and you know, low blood sugar feels horrible, you get shaky get sweaty, even feel like you're gonna pass out there are a lot of symptoms that can be different for everyone. I am so glad we have a different option to treat very low blood sugar gvoke hypo pen, it's the first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go with no visible needle before Gvoke, People needed to go through a lot of steps to get glucagon treatments ready to be used. And this made emergency situations even more challenging and stressful. This is so much better. I'm grateful we have it on hand, find out more go to Diabetes and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit gvoke slash risk.

Now back to Emily. And I was asking her about going home from the hospital.


Emily Hollis  12:58

Well, we actually got to go home the day before my birthday. So that was I was like Addy can't tell the nurses I have to be home for about a birthday. I'm like, Okay, well, we can probably work that out. So we got home. And at that time, she was not on a Dexcom or a pump or anything. She was dealing with a lot of highs more than lows at this point. We're still trying to get her out of the two hundreds and move at home to hospitals. So it was a lot of finger poking and crying and screaming and I don't want a shout out and it was very hard. Nobody likes poking their kids, you know, you have to hold them down. And it's just, it's a lot of a lot of stress. But you try to stay calm and just reassure them that it's for their good you're doing this to help them until they got the Dexcom I didn't get any sleep because you're just constantly worrying about their sugar. Okay, is she gonna wake up is she gonna pass out?


Andrew Hollis  13:47

Probably a week and a half after diagnosis. We were driving down the road and daddy goes, there's a sale out there. Okay, we'll put our mask on. We're Let's go, you know, COVID we nobody really knew a whole lot about it. So it will keep social distancing. But we'll check out this garage sale. It turns out that couple had raised a daughter with type one. And unfortunately, they gave us their horror story about her going into seizures in the middle of the night. And that's how they induce you below and we're like a week and a half into it.


Unknown Speaker  14:15

Oh my god,


Unknown Speaker  14:16

it made us panic. That did not help us understand and feel better.


Stacey Simms  14:21

Oh, you know, I say all the time. We were the luckiest people ever. Because it's the stories that you hear in those first weeks that set the tone. And oh my god, how scary is that?


Emily Hollis  14:33

Yeah, my daughter is sitting there listening to the story as she's holding the course. Yeah, like she's looking there and her sugar is going up because he's getting you know she's getting anxiety over this. Yeah, like we gotta go we got somewhere to be


Stacey Simms  14:46

your home. you're figuring things out. I always tell people the first two weeks of us being home was the worst and then after two weeks ago immediately really almost got better that quickly. He was okay with. He was always okay with finger sticks, but he got okay with the shots like it. really got better quickly, although it's, you know, it's still scary and, and stressful? Did it work out more quickly than you had expected? Or was it more difficult for those first few months?


Andrew Hollis  15:09

I think we both found out that children are very resilient. And Addy definitely picked up on things very quickly and understood. You know, after about a week, she kind of understood, okay, this is going to happen. And the finger pokes got a little bit easier. She was always worried about the hospital lancets they were using adult, they were using the adult land sets, which are massive on those little fingers. There's no real estate there and a three year old, the one that we ended up getting from the pharmacy worked a lot better was a lot smaller, wasn't nearly as deep. And so she kind of gave into that really quick. But being on MDI with the shots, the injections, we kind of took turns, giving it until there was a day that I actually hit one of the nerves in her leg. And she jumped through the roof. And I think it traumatized me more than traumatized her. I mean, I I walked away knowing that I just hurt my daughter. And that's not something you want to do. And ever since then she's been like, Dad, you can do it, but only if mom's not around, because mom does it better. Right? So, so I think, you know, she gave into things definitely we get in a routine and and since we started this journey, we've made friends with a lot of people through social media, that has also just began their journey. And some of them that have only been a week or two weeks when we finally get to talk to them. And we try to encourage them and let them know, you will get in a routine and you will develop new daily routine very quickly. And it will become second nature. Before you know it, it won't be this big, scary thing looming anymore. You'll know, okay, we're going to eat, we're going to check your blood sugar, and we're going to give you your your insulin, and then you can go eat, and everything's gonna be okay. And we're going to go on throughout our day, and it's becomes the new normal, and it happens so fast. Literally, within three weeks of being home in the hospital, we were already very comfortable and starting to teach our friends and family. If something were to happen, we're not around, this is what you need to do. Emily,


Stacey Simms  17:01

I've looked at your perspective, I know you don't have a different one. But to me going through COVID isolation with a child with type one newly diagnosed, I see this in my local group too, it's going to be very difficult, because one of the things that really sustained me was beating up with families that had been doing this for a long time, like meeting in person. It sounds like you were able to form at least an online community or talk to other people. What does happen? Like,


Emily Hollis  17:26

yeah, I mean, I am a people person. So it was it was very difficult. I mean, very difficult. But I mean, if it wasn't for social media, I think it would have been a whole different story. You know, I've met, I can't even count, you know how many families I've met have parents that are going through the same thing. And I'm just very thankful for the social media groups that I've made friendships with other families that we've been able to help and, you know, we sent care packages, and you know, different things like that adding mixed pictures for different people. And, you know, she really enjoys knowing that there's other people out there like her and she's not the only one.


Stacey Simms  18:01

Alright, so let's talk about Dec my diabetes. It's amazing to me, I spent the first year of my son's diagnosis, basically, with my head down going, what the heck, how am I going to do this? You know, I'm trying to be a mom, and I'm trying to work and I'm trying to, you know, I have two kids. And I've talked to a couple of people in the last year who said, My child is really diagnosed, and I'm going to create this new thing that's going to help all these other people into how did you get this idea? How did this come about?


Andrew Hollis  18:25

Well, prior to diagnosis, I had bought a 3d printer kind of as a hobby. And my brother started a small business, he allowed me to make some items for him. And he was actually my first customer who paid off my machine. So that was really nice. But what ended up happening after we were on Dexcom, we noticed that we needed an overlay patch with an active child and the first patches we tried, they just stuck to her skin so well, that getting them off at the end of a cycle. It was a screaming fit, it would take us 1520 minutes just to get the overlay off before we can even start on the Dexcom itself. In one of the sites in the forums that I'm part of for 3d print communities, somebody had created a very similar feel to what we now offer. And so we printed one and tried it and it worked out really well. Emily posted it on one of the diabetic Facebook pages and people were like, Hey, we're waiting on ours. It's taken forever shippings backed up because of COVID. Can you make one? So we made a few and realize, man, people actually need these and they can't get them maybe we can fill a gap. So I contacted the owner of that particular file and said hey, you know, you've released it under copyright law, and I need your permission in order to formally sell these. I'm asking for permission and after some discussion, the fly ultimately came back and he said make your own. So we did and we we created what I believe is a better mousetrap. It fits better it's contoured to fit the Dexcom and that was the first product right was our G6  shield. What we've noticed is that the market there are people that are making similar things but they are awfully expensive. Have, we were able to cut some of our competitors prices almost in half. Because we don't need to make a million dollars, we really want to help people, we need to cover our costs and our shipping. So that's where it started. And from there kind of spooled because we had requests for Omni pod covers that are similar design. People want to deliver a cover that's a similar design to that. And actually, we just finished designing and we'll be releasing this week, sometime and I port cover that will help children with I ports help keep them in place. Because let's face it, diabetic equipment is very expensive. We can't afford to be knocking them off or having them fall off early.


Stacey Simms  20:36

Yeah, and I should just mention, if you don't know as you listen, when an eye port is, I wish I had found this earlier because my son did we did shots. We did MDI for the first six months. And I port is, I believe, a Medtronic product. And it's not always covered by insurance. I did a lot of research. Andrea, Emily, when I published my book, this is one of the things I mentioned in it. It's basically a pump site, it goes in the same way as a pump and said, you know, the needle goes in the needle comes out, the calculus stays below, it's a little teeny sticker, but then you put shots through it, instead of feeling the shot go in basically, it makes it so much easier. It's a little bit more precise, I think I'm giving a review of someone who has never used it just from what I've heard. But that's a really interesting bit to make this technology for. And Andrew, tell me a little bit about what it does, because you mentioned this the stickiness of some of the other overlays. This stays on, but it's not super sticky.


Andrew Hollis  21:27

Correct. Our covers are designed to meet three main goals. The first goal is to provide a shield between an overlay patch and the device itself with the intent of being able to change an overlay patch without risking removing the device on accident. So if you're mid cycle, and you need to change that patch, because it's just starting to look ratty or falling off, it will allow you to remove the patch without accidentally peeling up the adhesive of the device you're wearing. So that's the first thing that we wanted to accomplish with it. The second thing is to help provide bump protection. I cannot tell you the number of people that bump their device on a doorway or when they're putting their shirt on and they rip it off. There are our devices have sidewalls that cover the Dexcom the lever a the Omni pod, they're contoured to help deflect some of that impact and help things glands off of them. In fact, I just released not too long ago, a promo video showing all three of those devices on an arm where I'm smashing it against the doorframe as hard as I can actually bruised my arm trying to get it to knock off and they don't come off.


Stacey Simms  22:32

I am laughing because I watched that video. And I wanted to ask you if you hurt yourself, because and I'll link it up. You have to see it. He's just boom, boom, boom, boom into the door jamb.


Unknown Speaker  22:44

That's gonna be painful. Yeah, I'm


Emily Hollis  22:46

gonna add in there apart. The Addison was yelling from the end of the house, she said, makes her death. Okay, you did? They're banging his arm on something.


Unknown Speaker  22:55

Yeah, yeah. That's great.


Andrew Hollis  22:58

Really. Yeah, they do work. The third thing that our covers do, and this is really what our mission is. If you look at our logo, it says deck my diabetes deck out and show off. We wanted there to be something fun and colorful that you can add to your medical device that makes you feel comfortable about showing people my daughter was afraid of going out in public with her Dexcom she did not want to go to our family get together, she did not want to have a birthday party. She did not want people to see it because she thought she was different. And we tried to explain to her you're different, but it's not. It's a good different. You have something this thing here saves your life. And helps you understand what your diabetic track is. Being a three year old, she just didn't get it. So we put that cover on. She was suddenly like, wait, I could pick a cover. And I get to pick a patch, I get to accessorize. And she was all about putting it on. And then once she had those the patch on and the cover on, she was showing everybody look at this, look at my Dexcom Look at my cover, my dad made it for me it's purple or pink or whatever color she wears that week. And so those are the three main goals that we have for our products to help you change the overlay patches if you need to, to protect your device and to be comfortable wearing it to be able to assess arise and show off what you have the technology we have that ultimately makes life a lot easier.


Stacey Simms  24:18

As you look ahead. You are coming up on one year of your your diversity. The Addison Emily, let me ask you, what would you say to yourself a year ago, you know, how do you think you're doing?


Emily Hollis  24:31

Actually it's gone by very fast. And if you were to ask me, you know the dailies, the hospital, can you do this? No. You know, it's like, No, I can't do this. Why are you sending me home already? But I mean, it's just part of our life. It's just a normal everyday thing. Now,


Andrew Hollis  24:46

you know, if I if I could talk to myself a year ago, I would have said keep calm guys got this. Hang on. Life will become normal again soon. You know, it's hard to express how far we've come and feeling more comfortable with Dealing with this disease and understanding more about it. I did not know when she was diagnosed that I was going to have to wear so many hats. And now I'm partially her pancreas. I'm a data analyzer to help Emily make decisions based on trending data what we need to do with insulin. I'm a dietician now, right? I have to look at every label. If you're not diabetic or not family of a diabetic, you don't understand that you're looking at every label trying to understand what's in it, what's the carb count? What's this gonna do to her blood sugar, and then you realize it becomes normal. I probably look like a crazy guy in the grocery store picking stuff up now. But every, every time I'm looking at the label and reading it, and I'm calculating in my head, what's this going to do? Is this worth having to bump that extra insulin or maybe fight that high? But I would tell myself, it will be normal. Soon, it will become the new norm. Just hang in there.


Stacey Simms  25:47

Who wants to tell me about the chickens? 2022 chickens.


Emily Hollis  25:52

Yeah, we have 22 chickens. I always throw around a farm. My grandparents had a farm growing up. I'm an animal lover, Addison. You know, she take any animal and if she could, is on the hunt for a unicorn, so if anybody ever sees one of those, she really wants a pet unicorn. One day, she said there might be one that shows up, but we'll see how that works. Anyways, yeah, I mean, we do it as a hobby. It's, you know, it's fun to watch. We, you know, have the eggs that sell the friends and family. And this is something that I don't know, it's relaxing. I know that kind of sounds weird. But I find it relaxing to watch the chickens and go out there and seeing them. And right now we have 10 baby chicks that we just actually took out to the coop yesterday. They're about six weeks old. So we're all introduced them in a couple weeks to the old hens.


Stacey Simms  26:40

Do you get eggs from them? I mean, I assume?


Emily Hollis  26:42

Yeah, we do we get the eggs from them. It's nothing like farm fresh eggs. If you've never tried them, you'll never buy wheat. Or again,


Andrew Hollis  26:49

we like to say that if you own chickens, you'll understand chicken math. So we started with, I think six chickens, and rapidly that grew to 10. And then we realized we needed a bigger coop. So I searched around and found an old shed and converted it into a coop and we needed a bigger run. And then we had 20. And since then we've rotated out some of the older chickens that aren't laying anymore and brought in these new chicks. But she's Emily's already said she wants more and like, we just don't have this space. And I can't build another coop overnight. So we'll have to table that for a little bit. All right,


Stacey Simms  27:21

I you will know that I am definitely not a farm type person. Does anybody eat the chickens themselves? Or is this just eggs pets? For me a horrible person for asking this?


Andrew Hollis  27:31

No, there are, there are definitely people who will eat a laying chicken after they've stopped laying or slowed down to a point where there there's virtually no egg production. We don't mainly because we see our chickens as pets. The other thing to think about is the older an older animal get, the tougher the meat will be so a four or five year old chicken is not necessarily something like the rotisserie chicken to pick up from the grocery store. So part of our journey in creating our business is we've developed a lot of really good partnerships, and a lot of good friendships, right. So when you're in the business, you're looking at other things, and you're getting feedback from other people. And one of the other businesses that's out there actually has become really good friends of ours. And they're based out of Texas. They're called the sugar patch. And they provide overlay patches that they manufacture out of their home, the owner, she is a type one diabetic. And we have actually just recently partnered with them to be able to sell some of their patches through our site. So you can come and get a cover and a patch that fits without actually having to do any trim or anything else. But there are other partnerships that we are in talks with right now with other diabetic families that have started businesses because of their child's diagnosis or their diagnosis. We are trying to leverage some of the larger community to be able to help each other, advertise for each other or being able to put in a little Facebook post for each other. Because to me, it makes more sense to support a diabetic family than maybe to support a larger conglomerate that just produces for the money. Yeah.


Stacey Simms  29:07

Well, Andrew, Emily, thank you so much for joining me. It was great to hear your story. Again. I can't imagine having a child diagnosed during the last year where you couldn't, you know, see people in person, but it sounds like you've really found a community and I'm so glad for that. But thank you so much for joining me. I appreciate it.


Andrew Hollis  29:24

Well, thank you so much for having us on. We had a fun time.


Emily Hollis  29:26

Thank you so much.


Announcer  29:33

You're listening to Diabetes Connections with Stacey Simms.


Stacey Simms  29:38

I will link up information about deck my diabetes. And of course that video that we've mentioned, where Andrew is slamming his arm into the door jamb to show you the strength of the product there. I'll link that up as well. If you've listened for a long time, you know that chickens just kind of seem to come up. I always have dumb questions about chickens. That's not my life experience. I'm not going to ever be a person Some who has chickens in my backyard, just a different way of living. That's all.

Okay, tell me something good is coming up. But first Diabetes Connections is brought to you by Dexcom. And we have been using the Dexcom system since Benny was nine years old. We started with Dexcom back in December 2013. And the system just keeps getting better. The Dexcom G6 is FDA permitted for no finger sticks for calibration and diabetes treatment decisions, you can share with up to 10 people from your smart device. The G6 has 10 day sensor where the applicator so easy, I haven't done one insertion. Since we got it Benny does them all himself, which is a big change from the previous versions. He's a busy kid, knowing he can just take a quick glance at his blood glucose numbers to make better treatment decisions is really reassuring. Of course, we still love the alerts and alarms, and that we can set them how we want if your glucose orders and readings from the G6 do not match symptoms or expectations. Use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes and click on the Dexcom logo.


It's time for Tell me something good. And I want to give a big congratulations to Chris Rutan. Many of you are very familiar with Chris. He lives with type one. He was born with a much shorter left arm and only two fingers on his left hand. He has shared on this show that he hid his disability for years and years and never wanted to take his hand out of his pocket even. But he is now a motivational speaker. He is just a champion in our community. He was on the Titan games. And he's been all over the place. He was just profiled recently in men's health. And today, his book comes out. It's being released today on Amazon and everywhere. And it is called the upper hand leveraging limitations to turn adversity into advantage. I love a good book title. And that really is fantastic. So congratulations to Chris, I will link up to the book. I haven't read it yet, at least not as of this taping, I will probably circle back with him and have him on the show again, because he's just always a fantastic guest. And he's just a fantastic person.

He also has the best sense of humor, as you can tell by his book title. But at friends for life a couple of years ago, it was either 2018 or 2019. He was taking pictures with kids. He has a really cool looking prosthetic arm. And he would take it off and he would take the hand off and he would pose in crazy positions and put like have you hold it I'll have to link these pictures up or put them in the Facebook group. It's funnier for the kids. I look like such a ding dong. But it's amazing how he goes out of his way to make you comfortable. And he suddenly hero in our community. He's a hero in places like the lucky Finn project, which is a nonprofit organization that helps raise awareness and celebrates people born with limb differences. And you know why lucky Finn, if you've seen Finding Nemo, you know, Nemo has a lucky fin one is smaller than the other. And that doesn't really stop him from what he wants to do. It's a great organization. And I've only learned about it because of Chris. Congrats again, Chris, the book is the upper hand. And I'm sure you'll be hearing a lot about it.

In other Tell me something good news, friends for life is going to be in person in July, the largest family diabetes conference in the country is back it is going to be different, of course, because even though we're getting back to normal, we're certainly not there yet. And for people with diabetes, CDC and others have different guidelines. But there is a lot of information now at children with diabetes calm, I will link that up in the show notes as well, as you're listening, a lot of the kids groups are likely full because they really had to cut down on attendance, there is a lot of new health and safety requirements and information. But if you're at all interested, definitely check it out my understanding and I'm not part of children with diabetes, the organization that runs this or friends for life, although I'm a big fan, and I go every year, and I've spoken quite a bit. My understanding is that as we get closer, if the requirements change, if Disney's guidelines change, they may be able to open it up to more people. And as a personal aside, I think this is going to be the experience of a lot of these programs. And our local diabetes camp is planning to open with half capacity but has a waiting list because they're hoping as they get closer, the restrictions will start to be lifted. So who knows. But let's be optimistic. And if you've got an in person event happening, let me know this summer this fall. I mean, we're gonna be seeing so many more things open up. Oh my gosh, I know it's gonna take a while and we want to be cautious, but I'm getting really excited. So that's my Tell me something good. I am planning to go back to friends for life this year. I don't know about what the speaker situation is yet. I may have it sorted by the time this episode airs. But as of this taping, My plan is to be one of the vendors again, I absolutely love being part of the conference. And I think that's where I'm gonna start talking about book number two. So I will keep you posted. But that's the goal right now I have a good idea but I need your help for the world's worst diabetes mom Park. To do or whatever we're going to call it. If you haven't told me something good story or an in person event, you know, all that's all the same right now to me, please let me know Stacy at Diabetes or post on social media, join the Facebook group. And we will let everybody know about your good news.


Hey, before I let you go couple of events to tell you about still virtual but lots of fun, survive and thrive boot camp is happening. This is for adults with type one. And this is a camp Nejeda or the program of Camp Nejeda. We are not there in person yet, which is a fantastic diabetes program in New Jersey, which just as a coincidence, my cousin who lives with type one, he went to this diabetes camp growing up Saturday, June 5, bunch of sessions about living with type one, learning about the latest and greatest in technology and mental health. I'm doing a session on advocacy. And it's not really on traditional advocacy. It's more about sharing your story sharing your voice. Why yet all there are it's a crowded field. Right? Everybody's got a story. There's five bajillion influencers now, but why your story is still really important. And I want to talk to you about sharing it and getting the word out and that kind of thing, what media looks for to we're going to talk about that how to share your story to the media, traditional and not so traditional. So I hope you can join me for that I will link it up.

Also, if you're a podcast person, if you're interested in podcasting, I will be speaking at pod fest a master class, the second week of May, I am doing a whole session about ethics in podcasting. And I'm so excited. I have been pitching this for years and somebody finally took me up on it. So we're gonna be talking about ethics. It's gonna be so fun for me. I'm excited about it. I have a free promo code if you would like to join masterclass, and this is again, a virtual podcasting conference. It's not about diabetes, just let me know and I will DM you the promo code. Okay, I think we're good. thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I appreciate each and every one of you. It is we're having about six years of the show. And I still am just so excited to produce the show and bring it to you every week. So thank you for being here. I'm Stacey Simms. I'll see you back here in a couple of days. Until then, be kind to yourself.


Benny  37:22

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Feb 9, 2021

Chris Stocker is a well-known voice from the early Diabetes Online Community, launching his blog about life with type 1 diabetes called Life of a Diabetic in 2007. In 2019, he stepped back a bit from the DOC with good reason: his daughter, four years old at the time, had just been diagnosed as well.

Now, two years later, Chris is jumping back into the online community via Instagram and a YouTube channel. He talks to Stacey about what it's been like for his family to adjust to their new situation. He also has a great message for any men who live with T1D.

In Tell Me Something Good, one of the scientists behind one of the COVID vaccine.. is one of us!

And some new books are our for the littlest ones of us..

The Adventures of Captain Lantus

Little Shots for Little Tots

When I Go Low: A Diabetes Picture Book 

Friends for Life information 

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

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here


Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!

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Stacey Simms  0:00

Diabetes Connections is brought to you by Dario Health – manage your blood glucose levels increase your possibilities by Gvoke Hypopen, the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom


Announcer  0:21

This is Diabetes Connections with Stacey Simms.


Stacey Simms  0:27

This week a well known voice in the early diabetes online community stepped back for a bit stopping his blog and his brand new podcast when his daughter at age four was diagnosed with type one herself.


Chris Stocker  0:39

Do you want to help me do it? Do you want to help me I you know decorate my infusion sets and things like that. So we shared those common bonds and that's how we looked at it from the day of diagnosis was Hey, you're like daddy now.


Stacey Simms  0:51

It's been two years since Chris Stocker’s  daughter's diagnosis, and he's jumping back into the online community. Chris shares his story as a dad of a child with T1Dwho lives with it himself

in Tell me something good. One of the scientists behind one of the COVID vaccines is one of us and some new books for the littlest ones of us. 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. We aim to educate and inspire about diabetes with an emphasis on people who use insulin aim host Stacey Simms, my son Benny was diagnosed with type one right before he turned to more than 14 years ago. My husband lives with type two diabetes. You know, I started blogging just after Benny's diagnosis. And that blog, which I eventually called off the dial led me to the DOC the diabetes online community at that time, and this is 2007. When I started, it was basically blogs and some online chat rooms. And you know, gradually social media exploded and everything changed to what it is now shorter posts, influencers, more podcasts, that sort of thing.

The Twitter chat remains DSMA on Wednesdays, if you're not familiar with that, that is a 10 year old now more than 10 year old chat on Twitter, I'll put a link in the show notes, but it's just hashtag DSMA Wednesday evenings at 9pm. Eastern for anybody in the diabetes community we'd like to give it a plug it's not separated by type or if you're a parent or a person with type one. And that's one of the ways that I first remember meeting Chris stocker and it was great to talk to him this week for so many reasons, but it really brought me right back to those early days. You know, when we had diabetes blog we can you know, to feel like we're finding all these really to me amazing, cool people in my computer, which depending on your age, either sounds ridiculous or you know, right on you, you know what I'm talking about.

But before we get to Chris, I do want to share a Twitter post that I was tagged in this is self serving, but I just I have to share it. A gentleman named Hugh Stimson retweeted my episode release about Lily and Ypsomed and my conversation with with Mike Mason from Lilly diabetes all about that. And he wrote, “I wish political journalists asked follow up questions, the way Stacey Simms asks health device executives follow up questions.” Whew. Thank you so much for writing that. It's hard to describe what that means to me. And and compliments are always nice. But that right there is why I started the show back in 2015. I would listen to podcasts. And I'd be yelling back at the hosts, I'd be asking my own questions. I'd be like, follow up on that. He didn't ask. You know, look, radio people are interesting. And well, I am really glad to be built like this. It is an odd thing sometimes. But I'm glad it came in handy. I'm glad it helped. And I'm really glad that you feel like I'm doing a service by asking those questions and trying, you know, sometimes we don't get answers, but you got to ask. So thanks again. I really appreciate it.

All right, Chris Stocker  in just a moment. But first, Diabetes Connections is brought to you by Dario health. And you know, one of the things that makes diabetes management difficult for us. It just really annoys me and annoys Benny, it isn't actually the big picture stuff. It is all the little tasks adding up, you know, are you sick or running out of strips? Do you need some direction or encouragement going forward with your diabetes management with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all of that and more. No more waiting in line at the pharmacy. No more searching online for answers. No more wondering about how you're doing with your blood sugar levels, find out more go to forward slash Diabetes Connections.

Chris Stocker’s  blog back in the day was called life of a diabetic and he wrote about everything from his diagnosis as a college student in 2009. To Day in the Life stuff to product reviews to what dragged him down and made him mad and what lifted him up. When his oldest daughter was diagnosed just before she turned four. Chris felt like he had to pull back and face this challenge before venturing back online in such a public way. But he never really left the community. And I think dads and men with type one as you listen, there is really great advice here for you in terms of support and asking for help.

Chris, welcome to the show. I'm excited to talk to you. I feel like we have talked before, but it's only been on Twitter and Social Media. Thanks for jumping on.


Chris Stocker  5:19

No problem. I'm definitely happy and honored to be a guest here.


Stacey Simms  5:24

Well, you're a podcast pro and a YouTube Pro. So this should be fun. But we do have a lot to talk about. Let's just start at the beginning for you. Because your diagnosis story happened when you were in college. Right? You were 19. Tell us about that.


Chris Stocker  5:35

Yeah. So I was I was a freshman in college, I was playing football at King's College up in Wilkes Barre, and the season was over. And I just was I was working out I was losing a ton of weight. I was drinking a lot of Gatorade and water. So I was urinating quite frequently. And I just thought I was losing weight because I was working out. And then this one night, I didn't have an appetite. I started getting sick all day long. And I ended up in the emergency room with 858 blood sugar.


Stacey Simms  6:05

What year was that? If you don't mind me asking.


Chris Stocker  6:07

That was in 2000. Wow. 2004.


Stacey Simms  6:10

What was the diagnosis process? Like? Did they you as a young adult like that? Did they believe you had type one? Was it an okay, diagnosis?


Chris Stocker  6:17

Yeah, it was. I honestly don't remember too much of it. Because I was kind of in in like a foggy state. My mom has worked at a hospital for almost 40 years. She took me to her hospital. So of course, we got the VIP treatment went right into the ER. And, you know, they took labs, and immediately The doctor came in and was like, You have type 1 diabetes. So there was no real question or debating anything whatsoever. Then I remember seeing the on site endocrinologist, probably I think it was that night. This was probably around 2am. So yeah, there was no discussion ever about whether it was type one or or another type of diabetes.


Stacey Simms  6:56

And what did they start you want? You immediately put on? I think 2004 elantas was around for adults, but not necessarily for kids. Like what what was your beginning entry into diabetes tree?


Chris Stocker  7:07

Yes, my very first night home, I can remember almost exactly the ratios and everything. I was taking 14 units Atlantis at night, the carb ratio was about 51 to 5015 to one. And that was Yeah, I was on lantis. And I think I started on probably either human log or no blog at that time. I can't remember that. But I didn't know anything about pumps or was never even brought up to me at that point in 2004. Either.


Unknown Speaker  7:36

Did you go back to college,


Chris Stocker  7:37

I I was not able to go back to King's College at that time. So I stayed home for a year I went to community college. And then I got this bright, awesome idea that I wanted to go to college away from Pennsylvania. And so I decided to go to Boca Raton, Florida and finish up school at Florida Atlantic University. So not only was I only a year or so maybe a year and a half, after diagnosis, I was then telling my mom that I was going about 1200 miles away to go to college. So it was definitely a rough conversation to have with her for sure.


Stacey Simms  8:15

Okay, well, it is sometime later, let's say right, it's, you know, we know you did pretty well in college, I assume. Can you give us parents the reassurance that you know, you You did? Okay, and that was the right move for you?


Chris Stocker  8:27

Yes, I mean, it definitely forced me to really grow up pretty quickly. I mean, I was 20 by the time I went there, but I was a little bit more mature than a lot of my, you know, my roommates and a lot of my classmates, because I was managing this disease pretty much by myself. I had no family, no friends down there. So it was really it was on me, I was in constant communication with my diabetes educator up here in Pennsylvania. So I was able to communicate via email with them quite often. So you know, there were some times where I had some pretty high blood sugars. I did actually end up at the ER one night, because I was getting my insulin through the school on campus pharmacy, which was not open on the weekends. And I thought that I could go from Saturday afternoon till Monday morning with just about 10 units of insulin which I use in one meal. So I actually ended up in the ER, I had met my girlfriend who's now my wife down there. And this was all new to her too. And she ended up taking me to the hospital and think I was probably up in the five 600 range. And then that was an interesting phone call to my mother as well. Who at that time, then flew down and did the motherly thing and came down and spent a few days down there with me.


Stacey Simms  9:49

I'm wondering though, I mean, my kids, my daughter's in college far away. Then he is a sophomore in high school and we're starting to talk about college and I've told him you know, you can go wherever you want. I'd love for him to stay next year. We're at least in this state, but I doubt that he will. I'm curious looking back What made you want to go so far away? I mean, do you feel I don't wanna put words your mouth I wonder like, did you want to prove something to yourself? Did you just love that school always wanted to go to Florida like why from there's so many great schools in that Pennsylvania northeast corner?


Chris Stocker  10:16

The weather? Yeah. Yeah. So I was playing football. I played football my whole life. I was playing football, I kings, I actually left the football team because I had no energy. I couldn't I didn't want to work out anymore. Later to find out that that was diabetes related. And I just said, You know what, like, I don't wanna play football anymore. I just want to go somewhere that's totally different than than where I grew up. I love Pennsylvania. I'm actually back here now. But I wanted to go somewhere totally different. And I started looking at colleges. I'd always wanted to go to UNC Greensboro. I don't know why, but I always wanted to go there. And I started looking online. And one day I was watching a tennis tournament, and Andy Roddick was my favorite tennis player and it popped up that he lived in Boca Raton. So I went on the internet, looked up colleges in Boca Raton, I found Florida Atlantic and I fell in love with their website. So I always used to joke that I have Andy Roddick to thank for meeting my wife. Even though I've never met Andy Roddick, and Andy Radek has no idea who I am.


Stacey Simms  11:22

Well, you wouldn't be the first to go to college because somebody either lived in that town or went to that town that you admired. But that's a great story. I love it. I want to talk about the diabetes online community, you were a very big part of this. You still are. But there was this time when there were so many bloggers and we were all just finding each other on Twitter. But I at first like to skip ahead in your story to when your daughter was diagnosed. I think that's such a fear of so many people I know who are adults with type one. But it does happen of course and you do deal with it. Do you mind sharing her story too. When was she diagnosed?


Chris Stocker  11:56

She was we're actually coming up on her two years, in about a week and a half year so she was diagnosed on February 12 2019 in the middle of a snowstorm. And that was when we decided to take her to the ER was when we had about eight inches of snow on the ground.


Stacey Simms  12:19

Right back to Chris in just a moment Diabetes Connections is brought to you by g Bo hypo pin. And almost everyone who takes insulin has experienced a low blood sugar. And that can be scary. A very low blood sugar is really scary. And that's where GMO hypo pen comes in. It's the first auto injector to treat very low blood sugar Jeeva hypo pen is pre mixed and it is ready to go with no visible needle. That means it's easy to use in usability studies, 99% of people were able to give g vote correctly. I'm so glad to have something new, find out more go to Diabetes and click on the G book logo. g Vox shouldn't be used in patients with pheochromocytoma or insulinoma. Visit chivo slash brisk. Now back to my conversation with Chris about the night his daughter was diagnosed. Had you suspected I mean I, you know I don't wanna get too personal. But


Chris Stocker  13:14

the signs were there. And I feel that I had maybe been living in denial for a little bit. It is something that I had thought about every single day from the day my wife told me she was pregnant, that that what if scenario and it was something that I talked about a little bit, but I didn't talk about it a lot because I felt too vulnerable, I guess. So I shared that because I knew I would not be the only one that had those feelings. But when I would see her, she was potty trained. So she was waking up probably three or four times a night asking for water and having to go to the bathroom. And I really started to see a change in how frequently she was going to the bathroom. And then that kind of was going on for you know, a couple of nights. And then just one night, I just had a gut feeling. And I said well let's pull out my meter. Let's check her so you know, of course, she didn't want that to happen. And you know, I can remember just looking at the meter. The number was in the 250s but I just remember looking at the meter and then just knowing and just knew and just being just crushed. So it was it was something that I had kind of mentally prepared for but it's just one of those things I don't think you're ever prepared. You know you think you might be but it's just you know, it was just a crushing feeling. But then the dad and the type one in me kind of just said hey, it is what it is. We just got to do it. And you know we took it to the hospital. I'm amazed by how she handled the entire thing. It was just unbelievable being in a in an ambulance to go from the ER on hospital to the pediatric unit at another hospital. I mean she loved that still talks about it to this day. Really


Stacey Simms  14:57

what did she do what she did like she was feeling Okay, and she was excited.


Chris Stocker  15:01

Yes. So she didn't really know what was going on exactly our local hospital, which was, you know, a few blocks away, they didn't have a pediatric unit. So it's a system hospital. So they just, you know, put her and my wife in the ambulance and took them to the hospital that had a pediatric unit for her. So she got to watch TV pretty much all day long. She got to play with toys in there. So it was different, you know, getting getting those first round the labs done and putting her into the burrito as they called, it was probably her only bad memory of the entire process. So she definitely still talks about those days, even, you know, she was a month away from turning four. What is the burrito? So sorry, later down on the table to draw labs and freaking out? Yeah, so they kind of, you know, they put like a weighted almost like a weighted blanket over her to kind of strap or in and they just called it a burrito, I guess to make it sound not so terrifying.


Stacey Simms  16:00

How long did you stay in the hospital? And then what did you have to do? I assume you know, your you and your wife are pretty well educated about diabetes. So I don't know that you needed much of that. But it's different when it's your child,


Chris Stocker  16:09

I would assume? Yeah, it's totally different. And we were in the hospital for about two and a half, maybe three days, I do know that they kind of rushed us through the process. Because when we first went there, I basically just said, Hey, listen, I have type one. I know what it's like, you know, I know what to do. But I don't have a child with it. So I know I need to, you know, relearn some things, and things are going to be a little different. But the, you know, the staff there and the whole diabetes team was very helpful. And really, they directed most of the education, most of the conversations towards my wife, which was something that we kind of asked them to do, because I really, you know, my wife had lived with me for 14 years before that. But my diabetes was kind of just my own diabetes, I didn't ask her to take an active part and help managing if she knew if I was low to give me Skittles, she knew if I was high, I needed some more insulin, but she knew that I counted while I was supposed to be counting cards, but she knew the basics, but really, she needed to start, you know, learning. What is basal? And what is this? And what is that? So a lot of that education was geared towards her. And I think it was, you know, very helpful, not just for her, but also for me, as somebody that was living with it for at that time, I guess it was 15 years, then that there was like a refresher course that I that I needed. Because I was in my I was in my my own habits. I'm in my own ways. And it was it was really good to kind of take a step back and relook at how you know, what is diabetes one on one, you know, what is the right way to kind of do some of these things.


Stacey Simms  17:48

I'm picturing that, you know, your daughter has watched you do this, even if you haven't been doing it in front of her the whole time and everything that this is now something that while that's not great, but she can share with her father,


Chris Stocker  17:59

absolutely. 100%. And that's exactly how I looked at it was, how can I make this easier for her and just like a parent with anything, my initial instincts were, what can I do to make this better for my child, and it was just instantly that put on a smile for her show her that my diabetes is not a burden on me, it's not something that I don't like doing. So I made sure that when I had to check my sugar, or she, we were going to check our sugar, I would do mine also. And you know, now we share some of those same things. So it's like, oh, when when I have to change out my CGM, you know, my sensors is, do you want to help me do it? Do you want to help me, you know, decorate my my infusion sets and things like that. So we share those common bonds. And that's how we looked at it from the day of diagnosis, as well as Hey, you're like, Daddy, now you and Daddy, we both have diabetes. And my niece was actually diagnosed about two years before my daughter. So that was a whole whole nother thing of trying to you know, help my brother and my sister in law with with dealing with that diagnosis. So, you know, now she shared that with her cousin as well. So it was kind of something that, you know, with her daddy having in it, her cousin having it that that she was able to not. And also she didn't at that time really even know what it meant to have diabetes. She just she thought it was just cool that now she has daddy. So it was definitely the way that we decided to kind of take is to be able to share that bond with her. And that's what we have in common.


Stacey Simms  19:23

Do you use the same technology as each other?


Chris Stocker  19:25

We do. We do. Now, we did it at the time, but the same CGM and we both use the same insulin pumps,


Stacey Simms  19:32

you don't have to answer this but you know when you say to your your daughter and this is what I think we would all want to say to a newly diagnosed child right? It's not going to be a burden. You can do this it's okay to have diabetes. And I think for me as the adult with my son ignorance was a little bit of bliss, right? You know, you can do this it's gonna be okay and it's not gonna stop you. You can play sports, you know, you can. Now they can fly planes, right? You can you can do what you want to do. But for somebody with type one who's lived with it for as long as you have Do you know that it is a burden? Sometimes you know that it is really hard. And I know this is not something you're gonna take, you're now, you know, almost six year old decided to Hey, by the way, you know, I mean these are conversations from they're much older,


Chris Stocker  20:10

we've had some conversations I mean, as much of a conversation as you can have with an almost six year old about living a life with diabetes. So we really kind of talked about it in Scituate, you know, take today, for example, it's been snowing for almost three days, we were out in the snow. And I can I already know, as soon as we go to that, in that snow, she's going low, it's just 100% guaranteed every single time. So we had to stop playing in the snow. So we could drink juice. And you know, she doesn't want to stop playing. So we try to you know, just let her know that, hey, just because you know, the other kids in the neighborhood happen, you know, they're still out playing and whatnot, we just need to take a little extra precaution steps here and just sit down and have a juice and you know, we frame it that day, they don't get to have a juice right now, right? You're the one having giggles and juice. So you know, but it's just you know, so we use those kind of, it usually comes up during Lowe's, where we may say like, hey, let's let's settle down for a little bit. Let's not run around or play rough right? Now let's just sit down. And, you know, we'll play a play game of checkers or something just sitting on the couch. So we kind of have those conversations with her, like why she has to sometimes stop doing what she's doing, she can get right back into it. But we might need to take 10 1520 minutes here or there to just settle down a little bit, have a little snack or juice or something like that. But I think about how I'm going to have additional conversations with her in the future. And I've gone back and forth, you know, talking in the mirror how I'm going to handle it, it's probably going to be one of those situations where I have a great plan going in, and it's just not going to go anywhere near how I play it.


Stacey Simms  21:50

Um, I do want to ask you a few more questions about your children because you have another child as well. But let's take a couple of minutes and talk about the diabetes online community from a few years back, if you're a longtime listener of the show, you know, we started this in 2015, which was probably the beginning of the end of the like the hybrid if we were to check blogging and that kind of thing. And the whole, you know, I guess what some people would call the Oh g diabetes people, you know, maybe that's when it peaked my non scientific method here. But you were, you know, you were right in there and all of those conversations, and I'd love to know, how did you find the online community? What was your first entry.


Chris Stocker  22:26

So I first started blogging or even finding out about blogs back in 2009, I was working for a, I was interning actually at a diabetes supply company. And they said, Hey, we want to start a blog. So I started to write blogs for the company. And then I was like, Okay, this is I kind of enjoyed this. And then I started finding other type one, blogs. And I thought, you know what, I have so much that I want to say, and I felt that I didn't have anybody to talk to about it. Because I didn't know anybody with diabetes, I went to high school with the kid. But I knew we drink Gatorade at halftime of football games. But that was it, we had water in a Gatorade, that was all I knew about diabetes. So I just started writing things that were in my mind that I think I just wanted to get off my chest, I just started writing about them. And I didn't even care that nobody was reading it, I just wanted a place to be able to just share my thoughts. And it just helped me just help my mind mentally just be able to get it out on to you know, typing on the keyboard and just reading it. So that's kind of how I started. And then I can't remember getting my first comment, I got a comment on a post, it was probably after about six months of writing daily. And so I mean, I can't do the math that fast. I mean, I, I was well into 100 posts before my very first comment, and somebody said, Wow, I was going through this exact same thing. And your feedback here really changed my mindset on it. And I'm going to try this and you know, make changes in my life and whatnot. And I just thought, wow, I just changed somebody's life. Like I just changed how somebody thinks about something simply by me just typing on a computer. And then it just that was kind of that first, like, I'm actually helping other people by just getting out the words that are bothering me. And then it just kind of took off. From there. I just started writing daily and just I started meeting other people. You mentioned previously speaking to people on Twitter and a little bit of Facebook back then, but just meeting a ton of different people online, and just writing and writing and writing and writing and just sharing my story. And it was just, you know, I was never very edited in my blog post. And even my wife would always say, Did you know that you spelled this wrong? Or you said this? Like No, because I type and I wrote the way that I speak and it came out that way and it was just how, you know it was I didn't have a you know, a very like a very edited style. And it just kind of, you know, people kind of just connected with it and it was just Every time I would get a new comment or a new share or something it felt it just felt motivating to know that I was helping people by getting those stories out there.


Stacey Simms  25:08

It is funny. That's one of the reasons why I love podcasting, because there is no editor for my grammar or my spelling. And I have transcripts now. And those are very difficult for me because I usually we clean up the diabetes language because my transcription software doesn't speak diabetes very well. But I'm not correcting the grammar and the spelling from pot. Yeah, it's really, really interesting. And I'm going to link up your your blog if that's okay. Because I think a lot of those older posts in itself, a lot of residents, I mean, I blogged as well. It's starting in 22,007. And I think two people read that blog, but I've kept it up. Well, I just like you I got so much more out of it right. For me, it was perfect for me, I got I got a lot of help, just mental health assistance for writing it almost like a diary. But it has been in the last couple of years, people have found the goalposts and it's helpful because diabetes issues change, but not really, right technology changes things, but not really,


Chris Stocker  26:03

you know, I still get notifications of comments on posts that I wrote back in 2010 2011. And one of the areas and this kind of circles back to my daughter's diagnosis is that I wrote maybe, I think I wrote two posts total about my fears of one day having a child B die, those with diabetes. And to this day, those are still some of my most, you know, most read posts and most commented posts and people to this day still comment or send me emails like, hey, how did you go about this? Or how did you deal with this? And, and it's just, you know, those are things that I wrote, five, six years ago before I even knew I was having a child. And it's still relevant today as well.


Stacey Simms  26:43

Well, you're dipping your toe back into social media with, you know, YouTube videos, you're on Instagram, are you podcasting again,


Chris Stocker  26:49

I, I am not as of now, but I'm not saying that I'm not going to. It's funny, I did start a podcast, and I recorded two episodes. And my daughter was then diagnosed. So I kind of stopped. You know, I


Stacey Simms  27:05

mentioned that when I started this podcast in 2015, it seemed to be kind of like, I don't know, for sure. But from my experience, it was like this high point of activity online for certain a certain group of people. And a lot of those folks have kind of moved on or paused and come back. And, you know, I wonder too, if there isn't just a natural life to some of this old natural burnout to some diabetes stuff. And you've been very open about those kinds of things. Can you share that part?


Chris Stocker  27:31

Yeah, absolutely. So once my daughter was diagnosed, kind of everything just kind of went on Paul's it was this is our focus. Right now, this is everything that we want to focus all of our efforts on that I was actually going back to, I was getting my real estate license at that time, as well. So there was a lot, a lot going on at that time. And once I decided to start getting back into writing, I sat at the computer probably 20 different times to start writing about my daughter being diagnosed. And I was just filled with diabetes just all day long, whether it was I was managing my own diabetes, and my alerts were going off, and then it was time to check my daughter's blood sugar and then give her insulin and do her calculation, then do my calculation. And it was just too much that at the end of the day, or the the start of the day, I just didn't want to, I didn't want to think about diabetes anymore. I didn't want to write about it, I just kind of wanted to manage it. And that was it. And I definitely felt a disconnect from the diabetes community. Because I just kind of just left I just I shut down. And I just didn't want to be involved with anything. I didn't want to see posts, I didn't, I didn't want to read people's posts, I didn't want to watch videos, I didn't want to listen to anything, I just wanted to kind of just deal with that. And and it was just, it was a lot at once. And that's kind of what shut everything down for almost a year and a half. And then I started to write again a little bit, and they kind of came back to me where it was, I can remember the exact moment I was writing a blog post and my low alert went off and within five minutes, my daughter's low alert went off. And then my Omni pod alerted me that I had a low reservoir. And my daughter's went off about 15 minutes later that hers was being changed that night. So we were both having a low both theater pots change that same night. And I think that I actually had to change out my CGM that night as well and it was just a complete overload and I said are stopping again and I can't deal with this I need a mental break from from diabetes and I need to be at my strongest in order to be that you know role model and example to my daughter and I felt that let her see me get frustrated with with an alert or an alarm and and be like oh, I have to change that tonight or hi we have to do this or I'll have to drink a juice. I tried to never let her see that and never let her see that. There may be some frustrations that come with living Diabetes,


Stacey Simms  30:01

I'm hesitating, Chris, because Far be it from me to armchair psychologize anybody, but I want to plant this in your brain. And I agree six years old is not the time to do that. But I hope as she gets older, you do allow her to see some of those frustrations. And again, I'm not your doctor, or psychologist, right? I think if you were my dad,


Unknown Speaker  30:22

I hope this really is not at a place, I'm such a nosy person. Mom, I


Stacey Simms  30:27

become that we're my dad, to share those experiences, you know, when somebody shares the bad as well as the good, it just makes your bed feel not so bad. So when she's like, 10 1112, you know, those are the times when you guys I know, I know, it's in your future that you're going to share all of that, and she's gonna appreciate it so much. But I I agree, because I remember with Benny, you know, at six years old, you're just, you know, it's like, you know, you gotta brush your teeth. So you don't, you know, you don't get carried away. Everything's fun.


Chris Stocker  30:55

Yeah, I mean, it's, you know, it's a struggle at times, just to every three days, when a new pod has to go on, you know, she has to be watching either a cartoon or using the iPad, some some type of distraction. Now, we don't plan on doing that forever. And we've already kind of slowed that down a bit of what we let her do to kind of distract her from it. But I know that that's going to change in the future. And those are definitely, you know, some conversations that I would definitely have with her about the frustrations and stuff. But I think my thought process behind it is that if she sees that I'm getting frustrated of having to put on a new ami pot or put on a new Dexcom that she's going to think that it's so you know that she's going to put up by force who and and it's just something that I know will come one day, but I'm just trying to push it off as far as far


Stacey Simms  31:44

and I think you're very wise, because I will share with you that Danny ran away from insets. He had to bid pump his whole life. And you know, every three days, you're teaching the inset, and we tried everything Chris, we did, you know, numbing cream and ice cubes and rewards and he ran away from them. It was a struggle until about age eight or nine. And then it amazingly got better. And now he does everything himself for the past, I want to say three or four years even. And it's and then some kids start doing everything themselves very early. Right. I think when you're diagnosed tiny the trend that I noticed anecdotally is that it takes them longer just to be completely independent, because that's how they've been taught. So I don't take that iPad away before she's ready. She'll let you know when she's ready.


Unknown Speaker  32:26

You're right,


Stacey Simms  32:27

she will, it'll be fine. And I will tell you one funny story. I don't know if I'll keep this in because I'm talking too much in this interview. But we were laughing the other day because I used to let Benny say what we called potty words when he changed his incident. So right, we put it on and he could be like, oh poop or whatever. And I said to him in the kitchen the other night, he came down to change. And I said do you want to yell some potty words? And we were hysterical of the thought of thinking of my preschooler yelling real curse words, like Could you imagine if you know what he thinks of potty words today, so you can fill in the blank on that.


Chris Stocker  32:58

I like that. I like that idea. Actually, she will probably enjoy.


Stacey Simms  33:03

I think we would all like to yell some potty words when we're doing stuff.


Unknown Speaker  33:06



Stacey Simms  33:07

Let me ask you about your your second child because your wife was pregnant, which had to be so stressful when your daughter was diagnosed during that time. And you had, as you've said, you'd already been nervous about any of your children being diagnosed. Again, I feel like I'm being very nosy. But What went through your mind at that time.


Chris Stocker  33:25

So initially, I mean, my initial thought was the stress that was going to be put on my wife and her being pregnant at that time, and making sure that she was okay with it, and trying to comfort her as much as possible and try to take away as much of the stress that I could possibly do, you know, from a mother, and, you know, knowing that she was pregnant, we knew there were chances. And it was just a decision and conversations we had throughout our relationship. And before we were married, we're gonna have kids no matter what it's what we want to do, and we're not going to let the thought or the chance of something stop us from doing anything. And that's kind of our, our thought process in life in general. So we knew that we were going to, you know, have wanted to have a second child. And we actually were scheduled to find out whether we were having another daughter or not. On February 13, I think and my daughter was diagnosed on the 12th. So it was actually in the same hospital. My wife left and went, you know, down the hall and oh, my God on the elevator and went like two floors down. And, you know, she did what she had to do there and then so we were you know, planning on having this big celebration to find out if we were you know what we were having and next thing you know, we're we're in the hospital for a totally different reason.


Stacey Simms  34:48

I gotta be honest to Chris, I love talking to dads of kids with type one because we hear so much from moms, right, so many of the bloggers and the writers and podcasters like me Moms. So let me ask you as a dad, now not as just a person with type one, but as a dad of a child of type one. What advice would you give newly diagnosed families, I mean, you're almost you're two years into this. Now you know what worked.


Chris Stocker  35:12

I would say that just being open, especially with you know, your spouse about how you may be feeling about it, I think a lot of times that the reason why we don't hear dads speak out too much is because they want to be the backbone, they want to be the strong one they want to, to not show that they're upset and show their feelings. And for me, I've been open with my wife, me and my wife, we've had conversations, we've cried together about it, we've talked about things that I let her know, my fears that I may have over things about it, it has helped tremendously, because there are times where I just say, like, Hey, listen, I need a break tonight, I can't do this, I've had a bad diabetes day, I'm stressed out by this, I'm just getting upset about it, I need a break. And that open communication has really helped us become an amazing team. And quite honestly, my wife almost entirely manages my daughter's diabetes. At this point, I cannot express like how grateful and like, just proud and I'm amazed by how my wife has taken this on and have she just tackled this head on. And I mean, she's pretty much almost managing my diabetes at this point, telling me how many carbs are in my meals and this and that. So going back to being the dad is that I just think that it's okay to you know, you just have to be okay with having those uncomfortable and vulnerable conversations and, and just know that it's for the better good, like, let your guard down, let it out, it's going to help that you don't have to just be you know, the strong one, you know, every single day in every single situation where it is okay to just let your fears out. And if you need to talk to somebody, talk to somebody find somebody that you know, you may have something in common with and just get it out and talk it out. And it feels so much better. Even having diabetes for 1415 years before she was diagnosed, I reached out to other dads have type one kids that I knew from meeting in the community and had, you know, conversations with them, like, what do I do from here? Like, I know how to manage mine, but like, What do I do? How do I do this? How do I tell her this? How do I explain this, and that helped me tremendously. And that's part of that community feeling and knowing that, you know, for all those years, I was, you know, putting into the community to be able to reach out when I was the one in in need of help. And it was great to have that community there to let me know, like, You got this.


Stacey Simms  37:40

I'm curious, if anything in the last two years with your daughter has surprised you any of your reactions to things or anything that she's done, you know, you were not six years old or four years old, when you were diagnosed, did anything surprise you about her diagnosis or your experiences with it or your reaction?


Chris Stocker  37:57

I am not kind of glued to the Dexcom as much as my wife is. And my wife is with my daughter a lot more during the day than than I am as well. But one thing that my daughter does is she knows that if she's going to be you know, she's playing upstairs in her room, she needs to now take her phone with her or her Dexcom actually with her and she will let us know. I think she was only diagnosed for maybe three or four months, the first time where she said to me, daddy, my knees feel wobbly. And my initial reaction was, first of all, how do you know what the word wobbly means. And second of all, let's get the meter out. And let's check real quick. And I can remember we were in target which another place no matter every time I go in there, it ends up in a low, but we are in target and she said her knees felt wobbly. We checked her she was 41. And I just remember picking her up and sprinting to the front of the store and just finding the first juice I can find and just said just start drinking and I remember her asking about paying for it or something. I'm like drinking it don't you don't have to worry about that. I'll figure that out. Just start drinking. So that was probably a surprising moment to me of her letting me and this was before she had Dexcom. So that was very kind of surprising moment to me that she used the word wobbly and she knew that she fell off. So now she does that quite often now where she she says I feel low. She'll Look at her Dexcom and just randomly I'll just hear her scream out 125 or something. Okay, I guess that's what her number is so low that she she has taken that on as you know, she's kind of proud, not kind of she's extremely proud to have diabetes. You know, she in her classes. She talks tells people that she has diabetes and whatnot. So she definitely surprised me of how proud she is to wear it. That's awesome. That means you guys are doing an awesome job as parents. That's something we actually did kind of talk to her about that she doesn't ever have to be ashamed or, you know, she doesn't have to be scared to tell somebody that she has diabetes. In fact, you know, because my philosophy has always been I want to tell you that I have it because in case something Goes go wrong. I want somebody around me to know


Stacey Simms  40:04

this before I let you go, you have been posting you know more on Instagram and you're really getting back into it. And I noticed you posted a lot about your daughter and her reaction to the virtual friends for life conference. And I, I was part of that. And I gotta tell you, I wasn't sure what to expect me this isn't a commercial for friends for life, even though we love them. But I was stunned at how good it was to connect even virtual with people. You know, we're all stuck at home, we can't get out to meet up. But I loved that conference, did your daughter have fun? There was so much for kids.


Chris Stocker  40:35

She had an amazing time. I mean, she still talks about it almost every day. To this day, she talks about the different events that were going on, she talked about playing bingo with with the guy from Toy Story. She talked about the all the animals that are Parker Ranger that was there. And I mean, she loved it, she loved seeing other kids and hearing other people talk about it. And we were planning on going, you know, this year in 2022 it so it was something that she already knew was going to happen. And you know, the day was over, she was she started crying. She was so sad. She couldn't wait till the next one. And it was just, it was a you know, it was life changing to her because, you know, she had only known me and her cousin that had and a few other people that she had met that had diabetes, but to be opened up to this world of all these other kids that were living with it and we're all sharing their different CGM and their different pumps and seeing a different perspective other than just her life and you know, my life with it was just absolutely amazing for her to experience that even virtually, it was just amazing how smooth it went. And and all the activities that were there for the kids. Yeah,


Stacey Simms  41:50

I mean, I gotta be honest with you, I didn't put a lot of time because I figured, well, you know, I'll do my speech. And I'll watch one or two, the research updates. I was hanging out in the social hallways, you know, with my mom, friends, it was great. I was I thought it was a very well done. And so we'll put a plug in because they've got the march one coming up. And we put a link in the show notes. Is there anything else Chris that you wanted to push people to or to you know, to put all your links to follow or anything that you've got coming up that you wanted me to make sure to mention,


Chris Stocker  42:14

people can follow me on on Instagram, it's just life of a diabetic, it is a newer account, because I am trying to keep it separate it from a personal Instagram account that I had previously. And it's just just to keep things simple and clean. I've just kind of started a new one. And I am putting out weekly YouTube videos now so they can check that out, you know, with the link in the in the show notes, but I just hope that you know, I can continue to help people and share my story and also my daughter's story. And as long as it helps one person, I feel that all the work and effort that goes into it is well worth it. That's awesome.


Stacey Simms  42:51

Well, no doubt you'll be helping other parents and other adults with type one. Chris, I can't thank you enough for coming on. It was so much fun to talk to after connecting online for all these years. I really appreciate it.


Chris Stocker  43:00

Absolutely. I appreciate you having me on.


Unknown Speaker  43:07

You're listening to Diabetes Connections with Stacey Simms.


Stacey Simms  43:13

More information including Chris's YouTube channel and his Instagram and all that good stuff will be in the shownotes. And that is always on the episode homepage as well. So if you're listening in an app and it doesn't show you what you want, just go to Diabetes and find the episode should be very easy to do.

I should let you know he mentioned it went by quickly when he was talking about friends for life. He mentioned the Toy Story guy playing Bingo. what he's talking about there is john Ratzenberger who people might remember as Cliff Klavan from Cheers, but who has been a voice of a character in every Pixar movie, his son lives with type one. And Tom Karlya who's a very big part of friends for life, and also the Diabetes Research Institute. He knows him through his work through the DRI together. So Tom brought john to friends for life this year, which is really, really cool. And as I mentioned, they have another event coming up in March and I will put a link in the show notes on that.

Tell me something good in just a moment. But first Diabetes Connections is brought to you by Dexcom. And we started with Dexcom back in the olden days before there was share. I think we had Dexcom for two years, almost two years before Cher was added as a feature. So you know, we know using Sharon follow makes a big difference. To this day Benny and I set parameters about when I'm going to call him how long to wait, you know, that kind of thing. It really helps us talk and worry about diabetes less. It helps if I need to troubleshoot with him. I love this you can see what's happening over the last 24 hours and not just at one moment in time. The alerts and alarms that we set help us from keeping the highs from getting too high and jump on lows before they're a big issue. Internet connectivity is required to access separate Dexcom follow up. To learn more, go to Diabetes and click on the Dexcom logo.

Our first tell me something good story is one I wish I had jumped on myself. But I read about it at diabetes mine and Mike Hoskins always does great work over there. And I had to share it with you. Dr. Drew Weissman at the University of Pennsylvania is one of two key researchers behind the science used to develop the first COVID-19 vaccines. And he lives with type 1 diabetes. He was diagnosed more than 50 years ago, he didn't announce that he had type one, you know what he was in the news for this vaccine. But apparently some eagle-eyed folks by the photo of him getting his own COVID vaccine shot and they saw that he had an insulin pump on and I'm looking at the photo, as I'm telling you this, he's getting the Pfizer vaccine. And you can see it looks like a Medtronic pump on his waist. I will link up the story from diabetes mine, which is a great conversation with him, including photos, and Great job guys getting that done. Maybe we can grab Dr. Weisman and get him on the show.

Our other bit of good news comes in the form of more books for very little ones with type 1 diabetes. We've had folks on the show before who are authors of children's books, which I think are a really vital part of young children's care when it comes to type one. I know reading books like this to Benny, and bring these books to preschool and kindergarten and really willing to elementary school helped give us friends a good understanding. And you know, just seeing yourself in a book is a wonderful, wonderful thing. So I just want to mention a couple that are newer out there.

The Adventures of Captain Lantus is one that I have seen a lot of this focuses on seven year old Maxs, who has type 1 diabetes, and it's kind of a fantastical adventure, because everyone in beta town has type 1 diabetes. So this is a real fantasy story and very cute stuff. Brandy in our Facebook group in Diabetes Connections, the group published her T1D toddler book, it's called Little shots for little tots. And it is also very cute looking.

And one that I think is actually a pretty important one is called when I go low, a type 1 diabetes picture book. This is by ginger Vieira. And Michael Lawson. And we have talked to both of those folks on the show about other books that they have put out there. But this is a book that I wish I'd had when Benny was younger. The other ones are great stories and always fun. But this teaches about when a child is low, what does that feel like? What How do you articulate it? You know, what should you know about it, it's a great way to get young people with diabetes to talk about what low blood sugar feels like, and to help explain to their friends and friends, families and kids at school and that kind of thing. So I will put the links to all of these guys. They're all on Amazon. And I'm sure they all have their own author pages as well.

But there are so many great books about diabetes right now, if you've got tips, or you'd like to hear more, I had thought about in the past doing book reviews, but I don't have the time. So if that's something you're interested in, let me know, we could have an ongoing segment or something. I'm gonna be looking for new Tell me something good stories in our community. So please keep an eye out for that. I love to ask in the Facebook group. And you can always give me your good stuff.

Before I let you go quick reminder, if you are a podcast person, if you are thinking of starting one, if you have one, I have a podcast course it has nothing to do with diabetes. This is all about podcasting, and learning about podcast sponsorship in an ethical way, in a way that makes sense for small businesses. You know, I'm not Amazon podcasts here, or Wondry, or Spotify. This is about independent podcasters who want to serve their communities and make some money, enough money to cover the costs of the podcast or perhaps make a living at it. So I've launched a new course there's a free webinar coming up, I'll put all the information in the show notes.

And if you're just here for diabetes, which of course I think 99% of you are we have another classic episode coming up later this week, we're going to be talking about spare arose. But this isn't any spare a rose, informative interview. This is my very first game show that I did here on Diabetes Connections and it features some very familiar names, some very silly stuff, and a couple of mistakes along the way that we left in. So that should be fun, and that should be out on Thursday.

Thank you so much to my editor John Buckenas from audio editing solutions. Thank you so much for listening. Until next time, I'm Stacey Simms. Be kind to yourself.


Benny  49:21

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Jan 26, 2021

What is it like to actually give someone emergency Glucagon? What happens next? This week, Stacey talks to Bonnie O'Neil whose son was diagnosed with T1D at age 5 and is now 24. They had a scary situation while on vacation and out of the country. Everything worked out; Bonnie shares what she learned and what she wants other families to know.

Bonnie is the author of a brand new book: Chronic Hope (learn more here). She has a unique family history of diabetes, losing a brother before she was even born and has a older sister who is still thriving today.

In Tell Me Something Good this week, a big honor for one of our favorite frequent guests and fun news if your child plays Minecraft.

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



Check out Stacey's book: The World's Worst Diabetes Mom!

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Episode Transcription 

Stacey Simms  0:00

Diabetes Connections is brought to you by Daria health. Manage your blood glucose levels. Increase your possibilities by Gvoke HypoPen the first premix auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.


Announcer  0:21

This is Diabetes Connections with Stacey Simms


Stacey Simms  0:27

this week, what is it like, what really happens, when you need to use that emergency glucagon, I talked to a mom who found out while on vacation out of the country,


Bonnie O'Neil  0:37

I was just all I could do to stop my hands from shaking and mix that glucagon and get it in him. So point number one was when you go on vacation, make sure that glucagon doesn't stay in your hotel, keep it on your person you just never know.


Stacey Simms  0:52

Bonnie O'Neil's son was diagnosed at age five and is now 24. She has advice about using and carrying glucagon. She also has a unique story. She'll talk about growing up in the shadow of a family tragedy with diabetes, and how she and her sister have overcome that

in tell me something good this week, a big honor for one of my favorite frequent guests. And does your child play Minecraft? Stay tuned.

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 where we aim to educate and inspire about diabetes with a focus on people who use insulin. My son was diagnosed with Type 1 14 years ago, my husband lives with type two diabetes. I do not have diabetes myself, I have a background in broadcasting. And that's how you get the podcast.

longtime listeners will know that this show is not really about our experience my family's experience of diabetes week in and week out. I don't share a ton of personal information about Benny, but we do talk about our experiences. And I bring that up because I did a show recently with him to mark 14 years, which was a pretty big milestone. And we've done a couple of shows together over the years. I always say Benny is a big goofball. But you know, he's got good things to say I like to talk to him. I'm very proud of him, even though I give him a hard time. And I got a really nice review that I wanted to share. I don't ask for reviews very often. Maybe I should if you'd like to leave a review, you can send one to me at the email address at Stacey at Diabetes You can leave them on whatever podcast app you're listening to. You can drop them in the Facebook group.

But this one really was nice. And so I wanted to share it and say thank you to Ruth Ann, who posted it following that 14 year episode where I talked to Benny and she says “I listened to it yesterday and came away feeling understood. I've had type one for almost 45 years diagnosed at age 12. Then he was honest in the way teenagers can be when they don't feel pressured to spin things to make other people happy. I found him incredibly inspiring.”

She goes on to write “To me The message was you can be upbeat about life. But don't succumb to pressure to sugarcoat the hard realities of managing type one. I think being real is the healthiest approach to coping with a challenging chronic illness. Please tell him thank you from a grandma in Utah, Ruth.”

And I will say thank you to you. That meant the world to me. I agree. I think it's so important to be honest to write that line of diabetes can't stop you from doing the things you want to do. But it will stop you and slow you down sometimes right not to sugarcoat things too much. I really appreciate you taking the time to write that down and share it with me. And of course, I will share it with Benny and Wow, good luck to you. 45 years with type one, you're the inspiration. If you would like to tell us something always happy to get nice messages like this. I'm always happy to take constructive criticism as well. I do have a few people over the years who have yelled at me. But I think I'm pretty easy to find either on social media or via the email address. And you can always go to Diabetes and get all the contact information there. But Ruth boy you made my day

All right, we're gonna talk about using glucagon what that is like, and Bonnie's really interesting story in just a moment. But first Diabetes Connections is brought to you by Dario health. You know, over the years, I find that we manage diabetes better when we're thinking less about all the stuff of diabetes tasks. And that's why I love partnering with people who take the load off on things like ordering supplies, so I can really focus on Benny, the Dario diabetes success plan is all about you all the strips and lancets you need delivered to your door one on one coaching so you can meet your milestones, weekly insights into your trends with suggestions for how to succeed, get the diabetes management plan that works with you and for you. Dario has published Studies demonstrate high impact clinical results, find out more go to my forward slash Diabetes Connections.

My guest this week is here to talk about using glucagon and I think we can all From that, but she has another important story that I don't want to gloss over. Bonnie O'Neil has been part of the diabetes community since before she was even born. bit of a warning, this may be hard to hear Bonnie's older brother died when he was eight, his type one went undiagnosed until it was too late. Now, this was back in the 1960s. But we know that's still gonna happen today. Her older sister was later diagnosed, she survived and is still thriving now. And Bonnie has a new book out. It's called chronic hope. So there's a lot to unpack here, including that very valuable information about her family's experience with glucagon. I found this to be a very valuable and eye opening conversation. And I hope you do too. Bonnie, thank you so much for joining me. Congratulations on your book. And I'm excited to learn all about you. Thanks for jumping on.


Bonnie O'Neil  5:48

Thank you for having me. I'm excited to be here today. Stacey,


Stacey Simms  5:51

tell me about your son. But he's doing now because he was diagnosed as a little kid. And he is all grown up now.


Bonnie O'Neil  5:57

Yes, I've lived all the stages with him. So he was diagnosed as a five year old and he is now 24. So he's living not too far away from me about 15, 20 minutes, which I guess is every T one D mom's dream when their kid grows up that they live independently, but yet, we can still get our eyeballs on them and our arms around them from time to time. So yeah, he's doing great.


Stacey Simms  6:22

You it's funny because being diagnosed, what does that 19 years ago? Isn't that long ago. I mean, my son was diagnosed 14 years ago. But in some ways, it feels like a different world. Do you mind taking us back to that time, if you could tell us the diagnosis story. And I'd love to also talk about what you all started in terms of management.


Bonnie O'Neil  6:41

Sure, yeah, that's actually an interesting story. So I have diabetes in my family. So my brother was unfortunately died in the diagnosis process when he was eight years old. And that was before I was born. And so my parents had me in their 40s, basically to, you know, replace the child that they had lost. And then my sister was diagnosed when she was 16. And I was eight years old. And so I just grew up with it. We grew up with this fear of it being there. So I was always on the lookout for it. And I remember my first pediatrician when I want to have my first child, I said to him, so how do we test for this thing? Because I don't want it to be in in my child. This wasn't Austin. This is my oldest son, Alexander. And, and he's like, oh, Bonnie, you know, it comes on acutely. We can't just run a blood test every every few months, but you'll know it if you ever see it, frequent urination, and intense thirst.

And so I was always looking and so the day that I noticed that in my son, Austin, you know, obviously, there's the major panic, but I had grown up through my three pregnancies, I had done the urine testing for gestational diabetes. And so I knew exactly what to do. I went to the pharmacy, I bought a test kit, and I dipped Austin's urine in it, and it turns deep crimson. And so I diagnosed him at home freaking out going to the doctor and saying, they're like, calm down. This is Odile, like it, maybe it's not type 1 diabetes. I'm like, Well, do you know what else it could be? And so we, you know, I bundle up the three kids and we're living in Connecticut at the time, I took them over to the pediatrician. And he didn't have ketones, because we caught it so early. And so their practice was leaning into something that they told me was what Yale was practicing at the time, although I have an endocrinologist friend from Yale, who assures me they never offered, I suggested that, but the thinking was, if your child doesn't have ketones, you don't admit them to the hospital. Hmm.

So we went home, we literally went home without so much of the shot of insulin. As you can imagine, I was just freaking out because my brother didn't make it through his diagnosis story. So I was like, you know if you can remember Terms of Endearment and Shirley MacLaine, like shaky over the crib. Yeah, that was me that night, just like leaning over my son and just making sure all night long that he stayed alive anyway, that the pediatrician, the endocrinologist that my pediatrician was able to find for us was one who really didn't work with pedes. The youngest children they saw were really about 15 or 16. So we saw him The following day, and the long acting insulin that he gave him was Lantus.


Stacey Simms  9:37

I was wondering if that was even approved, because I remember was not really 2000 so it was for little guys.


Bonnie O'Neil  9:43

Okay, it was not it was it was not under age 10 and so I don't I didn't know any of that you know, and so, so that was the first there's two things that were very interesting in our in our care different so that was the one and then when we got to CHOP the Children's Hospital. Philadelphia. A week later, I forgot to say all this diagnosis happened exactly one week before we moved house from Philadelphia. Oh


Stacey  10:07

my god,


Bonnie O'Neil  10:08

I never recommend that moving house be part of your diagnosis to be that as it may that was our case. And so when we got to CHOP our the endocrinologist there was actually very keen to see know what would happen to this child being on Lantus at age five, I'm pretty sure that it's going to work out well, I can't prescribe it. But he came to me that way. So I can leave him on his protocol. So that was interesting. And it worked beautifully. So my son never used NPH. And I had friends at that time, who were very familiar with that insulin and just told me how fortunate we were that he never had to be on that. So that was one thing. And the other was, so my sister, the reason I gave you the backstory on my sister was that I grew up in a family of using exchanges, where you counted your you didn't count carbohydrates, but you looked at food, in terms of whether it was fat, or protein, or carbohydrate. And you gave each one an exchange. And so I was used to that world. And I literally was given a counting book that had both on it, it was the exchanges and the carbs. And it was kind of you could do it however you wanted. They were recommending I just use the carbs, but the exchanges were there as well. So that was interesting. Oh, and then there's a third one.


Bonnie O'Neil  11:33

But I remember. So his diagnosis was shortly after the DCCT trial, results came out and talking about intensive insulin therapy and how important that was. And I remember several visits, going in and talking to my CDE and saying, I'd really like Austin to be on that intensive insulin therapy. And she would, she would look at me like I had 12 eyes and like to say something, and I didn't understand what she was saying. And she didn't understand what I was saying. And it was many months later that I realized that Austin was


Stacey Simms  12:11

using Lantus and short acting together. Yes, exactly, was


Bonnie O'Neil  12:14

exactly. So yeah. So I was sort of living in some a couple of old paradigms and had to get with the program pretty quickly. Yeah,


Stacey Simms  12:22

but what a transitional time. Here was that that he was diagnosed,


Bonnie O'Neil  12:26

it was 2002. Yeah. And I'm so thankful I that is it is that so spot on Stacey, because just a few years earlier, and and the story would have been very different. My sister's story is very different. Sure.


Stacey Simms  12:37

And let's talk about your family for a moment. If we could be there's so much information there. You mentioned your brother, gosh, I can't I'm not even sure what to ask. But he died before he was diagnosed or during his diagnosis story. Was


Bonnie O'Neil  12:48

this in the 70s? The 80s Yeah, it was 1962


Bonnie O'Neil  12:57

Yeah, yeah. So my sister was six years old, my my sister Barb, and my sister Johnny, my brother, Johnny was eight. And so it was Christmas week, and my sister had the stomach bug. And a couple of days later, after she got better, my brother started throwing up. And they assumed that he just had the stomach bug as well. And he may have had that, but it clearly he then slipped into decay. And so by the time he got to the hospital, which was actually New Year's Eve, what he was in a coma. And so he passed away three days later, to make the story even more unbelievable. My mother delivered my sister Betsy, just nine days after that.


Stacey Simms  13:43

Oh my gosh. Oh my goodness. Yeah. You know, DKA is I don't have to tell you this. You know, it is the most dangerous time for people with type one and it's amazing to me how now. Gosh, we are you know, more than 50 years after what happened with your family with your brother? Yeah, we are still having something like 30 to 40% of people who are diagnosed with type one diagnosed in DKA, I know you work a lot are you you've written a lot with beyond type one. You know, are you involved in efforts? Do you see the you know the DKA awareness that's something that you you talk about.


Right back to my conversation with Bonnie and we are going to hear her talk about glucagon in just a minute or two. And when you hear her talk about the emergency redbox, please remember, there are more options now and Diabetes Connections is brought to you by one of those by Gvoke Hypopen. Almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary and that's where Gvoke Hypopen comes in. It's the first auto injector to treat very low blood sugar. Gvoke Hypopen is pre mixed and ready to go with no visible needle. That means it's easy to use. Find out more go to Diabetes And click on Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma, visit Gvoke slash risk. Now back to my conversation with Bonnie and I just asked her about her family's tragic experience with DKA and how that's influenced her with what she does now in the diabetes community.


Bonnie O'Neil  15:22

Yeah, I mean, I do write for beyond type one, and I'm very active with JDRF. I'm on the board of the founding chapter, the greater Delaware Valley chapter. And I know that we're doing a lot of advocacy work around that and, and even just trying to get the shift in titling someone has type 1 diabetes, a JDRF, has done a lot of work around that, and is seeing that that shift so that it's, you know, reframing it, so it's not Oh, they got diabetes, or my son didn't get diabetes on June 19 2002. That was when we discovered that he would be insulin dependent for the rest of his life. He was developing the disease before that. And so we're trying to change that language. I think we're making progress. So that there's there's an understanding that you are, you know, certainly with some of the antibody tests, that testing that is being done now to be able to know that, you know, this person's body is being set up to get the disease, you know, if you have, I think it was three out of the four markers. It's, yeah,


Stacey Simms  16:31

well, and I was gonna ask you about that, about T one detect, we just did a show on that. We did an episode on that a couple of weeks ago. And when you think about something like that a person who has type one in their family, like you had and was so front of mind, I would imagine that you would have taken advantage of that with your kiddos, you know, years and years ago.


Bonnie O'Neil  16:48

Yeah. And, you know, back then, and that was something that I asked my endocrinologist was, so should we do any sort of testing and their response, and I had to agree with it was, well, there wasn't anything that they could offer. Other than Gee, I'm really sorry, it looks like your child is probably going to get type one. So the way I've handled it now, as a mother of two adult children who don't have diabetes, is that decision is yours. If you want to be tested, we can get you tested. If you don't want to, I have to respect your decision.


Stacey Simms  17:25

One of the things I really was looking forward to talking to you about and looking forward as a term I really should not use there. But I was very interested in is you were one of the few people I know who has had to use glucagon on their child, and then wrote about the experience. So I really appreciate you talking about this publicly. It is a fear that so many people have, you know, we have never had to break out that red box. And I'm so thankful for that. Would you share that story with us? You're even at home, right? You're on vacation?


Bonnie O'Neil  17:54

Yeah. And I'd be happy to because you know, it's a it's a story that still brings up a lot of emotion in me, but it does have a happy ending. And there are some good takeaway points for your listeners in terms of preparedness. So yes, I'm happy to share the story. My family went on vacation to Costa Rica. So it was my oldest son's first year in college, Austin, that would have made him a sophomore, I think in high school and my daughter would have been eighth grade. And we realized that all the spring breaks were aligning all three kids were in three different schools. And we're like, Yes, let's go and do something fun. So we plan this, this sort of dream trip, you know, where you're going to be renting, staying in a treehouse. And like, I'd have some time at the seaside all kinds of great stuff. So adventure, but fun. Yeah, so we get there and the very the very next day, I think we got there like late afternoon. So the next day, spent a little time poolside and then decided to go to this restaurant for lunch that was literally like an oasis on the seashore. So like in the sand cluster of trees and this restaurant was in these trees on the sand. And so it's just a walk up the beach, it was probably, I don't know, 20 minutes of a walk.

We get up there. My son Austin actually ordered the only sensible meal he ordered a pizza which is cooked my husband and I ordered cbj which is raw and my other two kids ordered some sort of salad again raw and when you're in a developing country, you should go cooked rather than right anyway. So you know it was a big piece of pizza and or you know, personal pizza. And so we give this was before wearing a Dexcom so we have no arrows indicating the dress. In which his blood sugar is going, we just have a blood sugar of somewhere around 250 probably. So we have to give a nice correction dose, I have to give the combo bolus that we were doing for the pizza to accommodate for the, for the fat. So it's gonna be dripping in for a while. And I didn't factor in the walk that he had just had. So right after lunch, he and his brother asked to go into the sea and play. I'm like, Sure, that's fine. So they did about five minutes later, he came back and he said, I feel shaky. So I tested him and he was in the mid 60s. And we ordered him a coke. And he started to drink. And still his blood sugar wasn't going up. Eventually, he drank the whole big bottle of Coke, and still really wasn't going up. And I was getting a little suspicious. And then he said, I don't feel well. I feel nauseous. And then I knew we were in trouble. And your mind just immediately goes to like, the cheese was tainted. The basil on it hadn't been washed and was in was unclean. Something, you know. Yeah. And I knew that he had like, over 10 units of insulin on board. And then the next thing I know he he starts vomiting. And I mean, pardon me, but projectile vomiting. And this is one of those moments when you just snap into too high alert gear. And it's to my son, and my, my oldest son and my husband go back to the hotel, get the glucagon because of course the glucagon was with us. But it wasn't with us.


Unknown Speaker  21:39

Right? It was


Bonnie O'Neil  21:40

in the hotel, helping the pillows in case they had a low but now it was it was tucked away with all the other supplies. And so the two of them ran back along this shoreline. And I knew it would have to be at least 30 minutes before they would get back. Right? Because there and back. And actually my son got back before my husband did because the roads were so rutted and so circuitous, that it just took him forever, it seemed to get back in the car. So all the while I don't speak Spanish, I speak fluent French, I don't speak a lick of Spanish. And all of these people were trying to help me and they didn't speak any English. And they all they could do is bring towels and bags for my son. And you know, I knew that if he drank any more, he was just going to vomit it. So there was no point in trying to give him more to drink. And so we just waited. And I have never seen a sunset so fast in my life. Oh, I don't know if it was where we were located on the Costa Rica coast. I know we were having a late lunch. But anyway, it just started to get dim. And by the time my eldest son got back with the the glucagon and cuts all over his bare feet, it was just all I could do to stop my hands from shaking, and mix that glucagon and get it in hand. So point number one was, when you go on vacation, make sure that glucagon doesn't stay in your hotel, keep it on your person, you just never know. Point number two with practice that injecting or at least mixing up glucagon. Every year, when your glucagon expires before you throw it away. Don't neglect that gift of having the opportunity to practice drawing it up because I was going to ask you,


Unknown Speaker  23:27

did you ever do that?


Bonnie O'Neil  23:28

I did it every year, I never threw one away without mixing it up. Because I knew that if I ever needed it, I wasn't going to be able to stop and read the directions. I just needed to know what to do. Because the only reason you would use it is if you're in an emergency. And in an emergency. We don't think so clearly, or our hands are shaking, you might be thinking but your hands are shaking so much that you just need to go from muscle memory. So eventually my husband got their like gate. So I drew it up. I gave him the glucagon. My husband got there. And we're in the car. And I was just surprised Stacey, his blood sugar didn't come right back up. I expected it would come up to like, I don't know, a perfect 110 would have been nice. You can even give me a question 150 I'd be happy with and if it didn't, it was I don't even know if it hit at oh well. And so I remember being in the dark in the backseat of that car just like trying to get every little whiff of the glucagon out and into him.

And, and then I just realized I don't have another glucagon. I brought one. I didn't bring two and he's not in a stable enough place. Like I we need a doctor. So thankfully, this was probably the nicest hotel we had ever stayed at. And and I'm really thankful because they had a doctor on call. So we as soon as we got back to the hotel, we asked the concierge to call for a doctor and he was there. Oh probably within 45 minutes, something like that. What did he do for you? Did he give him more like IV glucose? Yeah, so he unfortunately was this big, you know, had a big headboard, big posters on it, and like a poster board sort of thing. And he just hooked an IV up to him and tied it up to the to the bedpost. And so the following morning, when he came back, Austin had a fever by that point. And he said, You know, I can't rule out that this isn't appendicitis, you have to get an emergency surgery in Costa Rica, this was not what I had in mind. And long story shorter, what ended up happening was he said, You've got to get him down to the Capitol to San Jose, four hours back down the way we had come up, you know, just two days before. So we have to do that, you know, it could have been the fever could have been from the food poisoning, which it was, but he said, you know, we have to be safe, it couldn't be appendicitis or something else. And so that was the longest four hour ride I've ever had in my life.


Stacey Simms  26:02

Yeah, it was not appendicitis, it turns out to just be


Bonnie O'Neil  26:07

a lot it was it was just the food poisoning. And he spent three days in hospital. And there again, you, as a diabetes parent know more about diabetes than emergency room physicians do. And it's important that you know that and that you believe in yourself about that. My son, his freshman year in college had to go to the ER for the stomach bug. And there to the emergency room, physicians relied on me for what I knew about how to take care of his diabetes. And so when we were in Costa Rica, the attending physician gave me her cell phone number, and said, I want you to be in touch with me. If this doesn't come around, if his numbers don't go in the way we want them to, we're going to take the pump off. And we're going to do it our way. But I will give you it was basically I'll give you six more hours, I think this was like on day two or something. Because she was letting me manage his diabetes. Right? And but then she said, You know, we're gonna do it six more hours this way. And let me know how things go. And it did it worked out fine. So here's two more points coming to my mind when you're traveling. Don't just take one glucagon, you might need to use a second one when we were leaving the hospital. Among the other prescriptions that the doctor wrote for me. I said, Could you write me a prescription for glucagon because I use the only one I had. And clearly, my son didn't get a stomach bug. It was food poisoning. So food poisoning could happen again. And I want protection from that. And she looked at me with these beautiful, innocent eyes and said, Bonnie, we haven't had glucagon in this country in over 10 years. Wow. And so just don't imagine that it's going to be available for you. So travel with to glucagon when you travel. The other thing was, when we were in the hospital, the only ketone tests they were doing were blood ketone tests, they weren't doing any urine ketone test. So I had to wait until they would come back. You know, they weren't doing blood tests as frequently as we would expect to be doing our ketone tests. So again, don't just travel with a bottle that has maybe 10 ketone strips in it. I had a nearly new bottle of 50 ketone strips, and I was worried that I was going to run out


Stacey Simms  28:29

going forward. I assume you're filming like to travel? I mean, this was obviously a big trip and a big treat. Did you hesitate about traveling again?


Bonnie O'Neil  28:37

I don't think I'll go to Costa Rica. I'm nothing against Costa Rica. It's just the memories are. They're profound. I do try to pay attention to where there is a hospital, which is an easy enough thing to figure out. We have continued to travel that is for sure. In my book, I talk about another episode that happened after that, where he his insulin pump broke, and we were in France, and he had to get a we had to locate him a pump in a foreign country. So that's another fun story. But no, we've continued to travel, but I think it's just being safe, bringing your supplies with you and an abundance of supplies, checking to know where the hospital is. And I think it's it's just about being comfortable. Making sure that you feel comfortable where you are. Well, you


Stacey Simms  29:32

mentioned your book. Let's talk about that. Sure. Yeah. Oh, congratulations. That's Thank you.


Unknown Speaker  29:39

Thank you very excited.


Stacey Simms  29:40

Yeah. So why'd you call it Chronic Hope? Tell me about where that title comes from?


Bonnie O'Neil  29:44

Okay. Well, you might want to edit this out. I'm not sure so I was I was thinking about how much you know, I loved my my son and the care I give for him. This As a chronic condition and the title chronic love came to my mind. And that actually had been my working title for a little while. And as I was working on my book proposal, I did a little research little Google search on chronic love, and it was a porn site. So I changed the title. And actually, once I came up with the subtitle, chronic hope, is exactly what I'm writing about. We all love our kids, we do in a way that we show our love to them, especially as full time caregivers, that just cannot be disputed. But there's some times when we as the parents just lose our way on the hope journey. Because it's, it's so long and so complicated and can be so unforgiving. And we can be unforgiving of ourselves. The message really is hope for us.


Stacey Simms  30:57

I may have to lead with the chronic love, I think that forget about editing that out. That's pretty funny. Oh, my goodness. But you've had this story and you for a long time. I'm curious what caused you to kind of write it now to release it now?


Bonnie O'Neil  31:14

Yeah, good question. Well, I love to write. That's the first starting point. I've been writing for a number of years and have been honing that craft. And as I was thinking about what the next topic was, that I wanted to write about, it just felt like it needed to be a story that I've been living, something that was really true. And that it wasn't just something I'm going through now, which so many of my blog posts words like, you know, it's that short, quick blog post is almost like an instant word. It's like what you're going through at that moment, and you write, but I felt like I needed to write something where I had come out the other side, and actually had some wisdom to share. And once I sort of landed at that place, it was well, this is what I know better than anything else. And living this story out first with my nuclear family. And then with my family with my children, I just have been steeped in that for so long. I speak for the jdrf education conferences, that type of nation summit, and that one of the earliest ones that I did, I was speaking on the psychosocial impact of T one D on the family. And it was the first time I had delivered the that talk and I was I was sharing about, you know, my nuclear family and then Austin's diagnosis and how that impacted me. And I was just really honest, and, and raw, and I talked about my anger, you know, the disease coming back into my family, and just the challenges with my husband, when the two of us were not on the same page and the fear, I carried my need for control, wanting to control the disease, and all of these things. And as I'm looking up at the group that I was speaking to, like, everybody's dabbing their eyes, and sometimes, like really crying and at the end, one man said to me, So when's your book coming out? And I chuckled and kind of tucked that away. And it later, I think informed me very well as to what I should write about next.


Stacey Simms  33:32

What is your I mean, you have more than one son, and I'm sure they are your children are all featured in the book in their own way. curious what Austin? Right Austin? Is your son with time? Yes. I'm curious what what Austin thinks of this?


Bonnie O'Neil  33:44

Well, Austin is a man of few words that he's not


Unknown Speaker  33:47

going to do. Much.


Bonnie O'Neil  33:51

I made sure that in the advanced copies that I have, that he was, he received the first one. And he very graciously accepted it and then said, Thank you. He has congratulated me a few times and said he was excited. I did ask him before I really started the writing, and was just sort of outlining things. I asked how he felt about it. And he said he was fine. And I did say to him, and it's the Absolute Truth. If there's anyone who looks ugly in the book, it's me. It's never hand because I am raw with how I processed my emotions. Because one of the things I feel like in that for us, parents have a child that lives with such a complicated disorder. 24 seven, we take so little time to attend to how we feel, you know, because it's how can I complain when my child has to go through so much. And so we don't really ever name what it is that we're feeling and give ourselves permission to feel what we're feeling. And so then we can't really attend to it and move along from some of those stuck places and I really feel that the You know, the emotional health of a family begins with that center of the mom and the dad. And we need to get our stuff together so that we can create a healthy family emotionally.


Stacey Simms  35:14

I agree it's so interesting because we, as you know, an initial diagnosis. And though those first few years, we as moms, I think so define ourselves by diabetes, it almost seems like we have it like and you come to a realization that Yeah, do not be do not have diabetes, we do not have our child's experience. But it doesn't make the experience of being a mom of a kid with a chronic condition, any less valid. It's just a different experience. And I think I'm hoping, kind of saying the same thing you are in that once you realize that it's a mom, that it's okay to take care of what you are going through, knowing that's different from what your kid is going through, you kind of name it and take care of it and acknowledge it and talk about how tough it is. And right now until you can do that. It's so difficult. Yeah,


Bonnie O'Neil  35:58

it's a kid. It is. And I'm so glad now that there's such increased talk about soul care, because that at least is putting it into the forefront of everyone's minds now. But I think parents of a child with a chronic illness just really need that permission to say, I too need this soul care. I am going through mourning. This wasn't what I was expecting. I was expecting my child to have the freest life imaginable. And they still do. But especially in those early years, it's a lot, we have to mourn the loss of this perfect health we had envisioned for our child, and we have to deal with the fact that Yeah, we are tired,


Unknown Speaker  36:42

a lot.


Bonnie O'Neil  36:43

And it's okay to say I'm really tired. And I think even under, like coming to terms with the fact that a lot of our friends just aren't going to get it. And there's a loneliness that we carry here as the caregivers of our children. And it's okay, and it's not it's once we begin to name it and look at it and explore it a little bit, and how it's affecting us. That's the beginning of healing and freedom.


Stacey Simms  37:09

And I meant to ask you earlier, and it's okay, if you don't want to talk about this at all, how is your sister doing?


Bonnie O'Neil  37:15

She has struggled in the last few years with some complications. She has had, I believe gastroparesis for, I think it's close to 10 years that I think, went largely undiagnosed, and then has been quite problematic in the last few years. She's begun going actually to my son's retinal specialist for some treatments for her eyes. And her second or third treatment, this most recent one, they found that the retinopathy had had gone away. So I'm very thankful for that. So she just maintains the most positive attitude through shouldering this disease through the longest time, but I can see that it you know, it has taken its toll.


Stacey Simms  38:06

And so in your family, you know, you have two people diagnosed at different times, but still almost, it's hard to describe how different it is. We talked about Lantus And then off air, you and I were talking about control IQ,


Unknown Speaker  38:19

right? No,


Stacey Simms  38:20

just a guess of reflection before we go of the technology and the advances of not only I assume your sister has is using different tools than she did when she was first diagnosed.


Bonnie O'Neil  38:30

She is for sure. And I think that has been a great asset to her. So yeah, she's using now the Omni pod and the Dexcom as well. I am so grateful for the time in which we live and for the medical advancements that Austin has been able to take advantage of. I know one of the my friends through jdrf. She said recently, I am so thankful for all of you parents who came before our family did who paved the way because my daughter her daughter was diagnosed at age two or three. I've never known what you have known. She's had the Dexcom as long almost as long as she's had diabetes. I don't know the sleepless nights that you know, I'm confident now like that each generation or micro generation is going to be able to say that to the ones who came before them that we're going to continue to advance and are the lives of our loved ones are going to continue to get better. And that also just gives me a lot of hope.


Stacey Simms  39:36

That's great. Well, thank you so much for joining me, Bonnie. I really appreciate your time. Best of luck with the book. I'm really excited for you. There's nothing like a book launch. And I hope we could talk again soon.


Bonnie O'Neil  39:47

Thank you so much. This has been such a joy to be with you. Thanks,


Unknown Speaker  39:50



Announcer  39:56

you're listening to Diabetes Connections with Stacey Simms.


Stacey Simms  40:01

Learn more about Bonnie and her book and her story at Diabetes In the episode homepage, as always, I put lots of links and info there, you could read an episode transcript, if you prefer to. Some people just like to read rather than listen to that it's fine by me as long as you get the info. In conjunction with this episode, I have a contest on social media. This is on the Facebook page for Diabetes Connections, not in the group this week. This is just on the page. And you can win a copy of her book chronic hope.

I also want to point out and I know we had a commercial in there, but I think it's really important especially for newer families to know that there are now options when it comes to using emergency glucagon because since the 60s, we've had the red box or the orange box, which were basically the same thing as you heard Bonnie talked about there mixing it up, and the big needle and all that stuff. There are new options. gfo hypopyon, is one that I spoke about, they are a sponsor of the show, they are a you know premixed ready to go shelf stable glucagon. And it's very easy. It's all in the panel ready, nothing to mix and you don't see that huge needle, it's very different. It looks more like an epi pen or an insulin pen and simple to use. There's also baxi me, which is a nasal spray. And that is also very easy to use, I will link up more information about that.

I just think it is enormously important to know that these things exist, knock on wood, knock on my head, knock on anything I can find. We haven't ever had to use emergency gun with Benny in 14 years. But as Bonnie illustrated, you just never know. So it's so important to be prepared. I'm also really interested in the future of this stuff. Because I keep hearing more and more people say that we're gonna be using it not just for Super lows, right? I mean, like me, you were probably told if He's unconscious, you know, if you can't keep anything down, that's when you use it. But now there's a new school of thought about using these in much smaller doses for less severe lows. So I don't have a lot of information on that. So I'm not gonna talk too much more about that. But I think that is very interesting. And something to watch. And certainly glucagon in an insulin pump is something that, you know, companies are working on, most notably the iLet from beta bionics. So, as we say all the time, stay tuned.

Tell me something good, a big honor for a wonderful member of our community. And that's about Minecraft to just ahead. But first Diabetes Connections is brought to you by Dexcom. And you know, when Benny was very little, and in the bathtub or in the pool, anytime his hands would get wet. I always noticed his fingertips. You know exactly what I mean. Right? We poked him so much. They were just full of these little pinprick holes. It looks horrible. I mean, you can really see it when he got wet at age 16. I am not inspecting his hands. I rarely see his hands anymore, but his endocrinologist does. And we went for a checkup in early January, his fingertips are normal. It's incredible. We've been using Dexcom for seven years now. And with every iteration, we've done fewer and fewer finger sticks G6 eliminates finger sticks for calibration and diabetes treatment decisions that we used to do 10 finger sticks in the past. It makes me so glad that Dexcom has helped us come so far. It is an incredible tool. If your glucose alerts and readings from the G6 do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions or more, go to Diabetes, Connections comm and click on the Dexcom logo.


Over the almost six years of this show, I have been so fortunate to have some guests that really made an impact on me, who I'm really lucky, I think to call friends now, but who I turned to again and again for information. I know I can rely on them. They'll give it to me straight and in a caring way. And one of those people is Dr. Stephen ponder. Many people know him because of his sugar surfing talks and books, but he's a practicing endocrinologist. He's right there in the thick of things in Texas when he can pray and hopefully post COVID runs a fabulous diabetes camp and has lived with type one himself for more than 50 years. He got a really great honor recently, and he says he was stunned to learn that he has been selected for a big honor at the University of Texas Medical branch in Galveston. This is where he went to medical school. And then he stayed there another nine years where he says he became a husband, father, pediatrician and pediatric endocrinologist and the award is the Asheville Smith Distinguished Alumni Award. He will receive that formally in June during the graduation ceremonies at Galveston and the to read his post about this was it was really inspiring he gave a lot of credit to others and he finished by saying never in my wildest dreams did I imagine an honor such as this so congratulations to Dr. Steven ponder for a great award well deserved that's just fantastic.

Another Tell me something good comes from Samantha Merwin who is the mom of Logan the elbow bump kid we've talked to them on the show before she is working to roll out a national program about Minecraft. This is a Minecraft t Wendy play project. She says she had a successful pilot and She's working to roll it out nationally, working out a lot of logistics apparently to roll it out for people outside of her home state. So more to come on that. And she's also been working on a project with the college diabetes network along with Cigna. This is a really cool program all about mentorship applications are going to open in February, I will link up the page that is already there for college diabetes network. Basically, it's a program for junior and senior undergraduate students, you got to be current junior or senior, and it pairs you with a Cigna employee who has a similar career interest. So if you want to learn more again, I'll put a link in the show notes. But this was really great. Samantha love the work that you're doing here definitely going to help a lot of people and keep us posted on both of these programs. My son used to love Minecraft he still plays it but man when he was like 12 or 13 that was all they played. It was pretty wild stuff. I don't know what he's moved on to now. Although that's a lie. He his friends are playing Uno. They were screaming and carrying on get the card game Uno. I asked him I was like why are you so loud? Kind of Be quiet. I figured there's like shooting people or doing something crazy. They're playing card games on the computer? I don't know, is there any sign that you're getting older than you don't understand the games your kids are playing. If you have a Tell me something good story, please send it Stacey at Diabetes or posted in the Facebook group.


Little bit of housekeeping before I let you go, starting next week, I'm going to be doing something different. I'm going to be releasing an additional episode every week. So we'll have the regular interview on Tuesday, the long episode with segments like Tell me something good and innovations and all sorts of stuff. The regular episodes on Tuesdays will continue that way. I'm adding an episode on Thursday. And these are going to be what I'm calling classic episodes. If you're a sharp eared listener, you will know that I dropped in a couple of these last year kind of as a test. They are interviews from several years ago, as I mentioned, we've been doing the podcast for almost six years now. This is Episode 347. So there's probably a couple that you have missed along the way. And what I'm going to do is put context to the interview, you know, kind of catch up with the person let you know what they're doing now, and then replay the interview from several years ago, we have really great stories from a lot of really terrific people that you may have missed. And this way, if you're newer, and you haven't heard it, it's super easy enough to scroll back. I mean, Apple podcasts only shows you 300 episodes Anyway, you don't have to go anywhere. It'll be delivered right to you. And you can catch up with some of the really cool people and stories that I spoke to back in 2015 and 2016. So that starts on Thursday, February 4. Right now I am scheduled to do it for about half the year. We'll see how it goes. And you'll have to let me know what you think. Because after all, the show is here for you. If you don't like it, don't wait half the year. Let me know right away. If you do like it, of course I would love to hear about that as well.

Next week, you'll be hearing from Lily I talked to the folks from Ypsomed a couple of weeks ago. Ypsomed and Lily are partnering to bring a new insulin pump to the United States. It's not a new insulin pump elsewhere in the world, but it could be here as early as 2022. We're going to talk about why Lilly decided to pivot and go in this direction. That is next week. And thank you to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.


Benny  48:29

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Sep 3, 2020

It didn't take long after my son was diagnosed for someone to tell us, "Kid first, diabetes second." Benny was diagnosed in 2006, but that phrase has been around a long time in the diabetes parenting community.

I get it. We shouldn't take away all the things that make childhood fun and special, because of a diagnoses of T1D. We also don’t want diabetes to be the first thing people think about when they consider our children and we don’t want diabetes to dictate every decision we make.

But the more I think about it, more I think that phrase misses the mark.

Check out Stacey's new book: The World's Worst Diabetes Mom!

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Episode Transcription:

Stacey Simms   0:00

This episode of Diabetes Connections is brought to you by The World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes available at Amazon as a paperback eBook and audiobook. Learn more at Diabetes



This is Diabetes Connections with Stacey Simms.


Stacey Simms   0:26

Welcome to a mini episode of the show. I'm your host, Stacey Simms, and I'm really glad that you joined me for this now these episodes I do occasionally are more. I'd call them more editorials. I do interview shows week by week if you're a longtime listener, you know that but this year I added in these mini episodes these minisodes just me, I am not a medical expert. This is more mom to mom advice. Just from my experience as a longtime parent of a child with type 1 diabetes, what I've learned and what I think can help. My son was diagnosed with type one when he was 23 months old.


Stacey Simms   1:00

that was back in 2006. He is now 15 and a sophomore in high school. Oh, my goodness, he is he's very comfortable with diabetes is very confident. He's very independent. And while we are far from perfect, we are doing a great job according to our endocrinologist, and that's all I really need to hear.

This subject has been on my mind for a while. So let's just get into it. I want to talk about the saying, kid first, diabetes. Second. It's been around our community for a very long time, probably longer than I've been a part of the community almost 14 years now. But I just don't think it works. It doesn't work for me. I don't think it works for anybody. So let's talk about it. What is kid first diabetes second all about? I think we know what it's supposed to be right? You hear this most often right after diagnosis. And it means that you know, your life shouldn't change that much.


Stacey Simms   2:00

From what it was before, or you know, you shouldn't take away all the fun things that make childhood childhood. And we don't want diabetes to be the first thing people think about when they consider our children. And we don't want diabetes to dictate every decision that we make. Now for some people, kid first diabetes second means letting them have a giant Sundae, or go to a pizza party. Now it doesn't have to be all about food. I did say it to myself years ago when I let my son go to regular sleepaway camp, not diabetes camp for two weeks when he was eight, and he has gone a month every year since then. So I've said that to myself, right kid first, diabetes, second, let's do this. But the more I think about it, the more I think it misses the mark. Kid first diabetes second, isn't right. It seeks to separate the diabetes from the kid, which is impossible to do. Or maybe it's not impossible, but it doesn't sit right with me.


Stacey Simms   3:00

Here's why implies that you're sort of cheating on diabetes. We're going to put diabetes aside, we're going to put it second. So we can do this other thing that every child should be able to do. Put the kid first, what we're saying is that kids with diabetes, shouldn't be able to do that shouldn't be allowed to do that. You're just letting this be a special case, because it's fun. And it's about being a kid. It's as though we're saying diabetes can't be part of a real childhood, a good fun, a wonderful childhood. take it one step further. And we're actually implying that diabetes can't be part of a good fun, wonderful child, or ultimately a person. It sounds dramatic. I know. But I really don't think it is. Looking at this a slightly different way. I talked about it just a bit in my book, the world's worst diabetes Mom, I use the analogy of the Hulk there. Alright, so when Benny was very young and ready


Stacey Simms   4:00

He was diagnosed just before he turned two. We couldn't explain to him exactly what was going on, you know, you know, when your blood sugar is high, you can be so grumpy, you can be unreasonable not that a three year old is always reasonable to begin with. But it was so hard to explain to him what was going on. And it wasn't until, I mean, really till about age four or five, that we were able to start working on a few strategies to help and one of the best involve the Hulk. We started telling Benny that he was a lot like the Hulk. I don't have to explain to the Hulk is right, the Marvel superhero, big green guy, comic book, TV show, movies, that whole thing. Okay, so we started telling Vinny that he was a lot like the Hulk when his blood sugar was high, and he felt angry and mean. But unlike the Hulk alter ego, Dr. Bruce Banner, we said he could learn to control the big green guy. So we started by having him recognize that he was high. This was before the days of Dexcom for us, so we would just test blood sugar, and then Benny would work on removing himself from the situation. He could go


Stacey Simms   5:00

It was room and beat up a stuffed animal. Or he could yell into a pillow. He could sit quietly with me, he could color he could drink water, he could be mad. But he couldn't release the Hulk on other people. It wasn't perfect, but it really helped him process what was going on in language that he could understand as a little kid. So fast forward to the Marvel Cinematic Universe. And this is, of course, the movies, the Avengers movies, and we're big comic book people. We have seen every MCU movie together by family, we all have our favorites. This was really as an aside us such a fun part of our, I don't wanna say our family history that sounds very high and mighty. But my children really were old enough to see these kind of movies just as they were coming out. And now they're older and they don't want to be with us as much and we were able to see all of them together. And it was fun in between arguing about the theories and talking about the characters and we saw the last I want to say four or five movies on preview night I would get tickets on the Thursday before they were released and we always will


Stacey Simms   6:00

A big deal about it. So it was great. And if you're familiar with the movies, or even if you're just familiar with the character that you know, the Hulk is always struggling, but the character is right. He has two distinct sides, Bruce Banner, and the big green guy, and they work in opposition. And that's kind of what we were telling Benny right this side can't understand that side. Or you know, when you're high. You're not you. You've got to get control over that part of you. Then we saw Avengers endgame. And I almost fell out of my chair when smart Hulk showed up. I What is he? I guess he's called Professor Hulk. But whatever he is called. Bottom line is that Dr. Banner has figured out a way to embrace his Hulk side, and the two are at peace. I looked this up. Yes, I did some research into Professor Hulk. Marvel says equal parts intellect and brute strength. The professor represents banners ideal version of self. And that's it. That's my hope for Benny. Now I have to stop for a second and say I can


Stacey Simms   7:00

Knowledge I am saying all of this as a person without diabetes, I'm the mom, I'm not the one living it. So I understand he has to find his own ideal point. This is exactly what I'm working toward. My son can't take diabetes and pretend it's somebody else. Yes, that worked when he was three or four. But in his young adult and adult life, he can't take his bad moods and its highs and lows and push them off on the other guy. I'm of course not saying highs and lows are not real. Obviously they are, they need to be acknowledged. And they in many cases need to be accommodated for by the people around the person with diabetes. But those highs and lows are part of diabetes, so they're part of him. And if Benny is able to embrace the side of him that he sometimes wants to reject, he will be that much stronger. And that brings us back to kid first diabetes. Second, it needs to change. It needs to change in our thinking to simply kid with diabetes. So what is that


Stacey Simms   8:00

That mean in practice, birthday cake? Yes, that is a life with diabetes, sleep over sure that's a kid with diabetes, soccer practice without me there. Same thing. I think if we treat these events and foods, like we're somehow cheating on diabetes, or somehow separate from it sends the wrong message. I mean, think about for us without diabetes. I am not eating birthday cake every day. But I sure I'm gonna have it the next party I get to go to knowing that. Do I then have to say, woman first birthday party attendee second? Or maybe mom first mom who really needs to eat more salad and fewer desserts second, I mean, you share that right? There's that guilt. Right mom, first mom who shouldn't be eating cake second. And it's not always about food. As I've mentioned, milestones and events are very relevant here too. So if you're saying kid first diabetes, second about, let's say a trip with the grandparents, you know the older sibling when


Stacey Simms   9:00

The grandparents did a special trip. And then a couple years later, the younger sibling with type one wants to go insure kid first diabetes. Second. Well, you're really telling your family that kids with diabetes shouldn't be able to do that. You're just allowing it, because it's fun. And it's about being a kid. It's just being a kid with diabetes. It's not easy to change our language about diabetes. I've been saying kid first, diabetes second for years. I looked it up. And it first shows up in my blog, in 2011. But words matter how we talk about diabetes matters. And our kids are listening, even when we think we're being careful. So I'm gonna stop saying kid first diabetes. Second. That is not how I actually parent and teach. It does not work for us. And it's not how I want Benny to think about his life with type one. So what do you think? Agree? Disagree? Remember, I am the world's worst diabetes mom.

I'd love to know what you think you can email me, or find me on social media, I'm linking up everything in the episode homepage. The show notes for this will be at Diabetes You can find all 320 episodes of Diabetes Connections there. We also have an extremely robust search. So you can search by keyword by topic by date, and find whatever topic you are looking for. But I'd love to get your reaction here, especially if you've listened this far, and you're an adult with type one. What do you think about all this? The World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes is available on Amazon in paperback eBook and audio book. I hope you check it out and read some reviews. It is all about our journey with type 1 diabetes, but it also features some mom to mom advice. And it gives you some suggested questions to bring to your next doctor visit that always confused me. How am I supposed to know what to ask if I don't even know what I don't know. Hopefully I can help you out there. All right, I will see you back here next week for our regular interview episodes. Thank you so much for joining me.


Stacey Simms   11:00

I’m Stacey Simms, until then be kind to yourself.


Benny   11:08

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged


Transcribed by

Feb 20, 2020

When a child is diagnosed with type 1 diabetes, most of the time the parents are told that T1D won't stop them. People with diabetes play sports, climb mountains, pursue acting and singing careers and much more. But what happens if a young child is scared to get back in the swing of things?

Stacey has advice for a family she met whose little boy is so afraid of low blood sugar, that he's sitting out his beloved soccer games.

Check out Stacey's new book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

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Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!

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Episode transcription:

Stacey Simms  0:00

This episode of Diabetes Connections is brought to you by the World’s Worst Diabetes Mom real life stories of parenting a child with Type 1 diabetes available on Amazon as a paperback eBook and audiobook and at Diabetes


Announcer  0:21

This is Diabetes Connections with Stacey Simms.


Stacey Simms  0:27

Hello, and welcome to a minisode of Diabetes Connections. Today I want to talk to you about a question that came up. When I traveled to Maine. This was a couple of weeks ago, I visited a group called the Maine P-Pods. It was a really fun event where I did my World’s Worst Diabetes Mom presentation. And we also had a presentation from Dr. Howard Wolpert who is a renowned endocrinologist and he talked about carbohydrates and really did a good medical presentation as you would expect. And then the two of us - this was really cool -. We got to Do q&a with the audience. So you had me, the mom, the lay person partnered with a pretty terrific endocrinologist. And then there were other healthcare professionals in the audience who were there kind of for support and popped in as well. I'm pretty sure they were also there to make sure I didn't go off the rails, because they hadn't heard me speak before. And when you're billed as the World’s Worst Diabetes Mom, I think they want to make sure you're not going to give the world's worst diabetes advice.

I want to share with you a question that came up that I think probably comes up more often than we realize. This was a mom and dad of a recently diagnosed I probably a couple of months in I'm sorry, I don't remember exactly. But my impression was, let's say six months ago, maybe four months ago. This was a six year old, and this six year old had been so excited to play soccer, really wanted to play soccer, loves soccer, can't wait to join the soccer team. But now with type 1 diabetes, the mom is sharing that the six year old is terrified to play soccer, because he is afraid of going low. And it's really breaking her heart, because he has a brother who is playing soccer and is doing just fine.

So the question was, how can I get my child over his fear of low blood sugars? And I thought this was a great question. Because what we normally get is all the rah rah cheerleading of, you know, our kids can do anything, and diabetes won't stop you and get right back in there. And, you know, that's probably what happens. Most of the time if the parents go along with it, right. It's for the parents to say, right, we're going to get right back in here we go, here we go. But this can't be the only child who is frightened for some reason. So what's going on?

I asked her a couple of questions. And I told her not to answer because, you know, there's only so much information you really want to put out publicly right and I don't want to pop psychologize that's really the turn of phrase, but you know what I mean? I didn't want to play psychologist when I'm certainly not in a, an educated position to do so. But no, it had the medical people there to back me up. I thought it was on pretty safe ground. So I asked her, What is he afraid of? Is he just afraid of that awful feeling? Right? He doesn't want to feel low? Is he afraid that it's going to be embarrassing that he has to leave the field for juice or that his mom is going to be checking his blood sugar? You know? Is he embarrassed about it? Or he wants to hide his diabetes? Or is he truly afraid that something bad is going to happen that he's gonna pass out on the field or he's going to die from a low blood sugar?

And then I asked her, again, not to answer in front of all these people. But where do you think the fear is coming from? Because a six year old is not going to decide that a low blood sugar is dangerous. Somebody's going to tell him this. And if that's what he's afraid of, where did that fear come from? Right. Take a cold hard look. Is it coming from the parents? Is it coming from a YouTube video he said did an older kid at school telling something?

I had a situation with Benny years ago, I want to say he was seven years old at a day camp. And if you're new to the show, my son Benny was diagnosed right before he turned two. He is now 15. And we've been all sorts of crazy situations. But he was about seven years old at a regular day camp. And he came home and he said, Mom, there's a kid at Camp who said, If I keep sticking my finger, I'm going to bleed to death. can that happen? So these kids get this fear, sometimes just from other kids who are just being kids, that other child, maybe thought he was helping? I mean, who knows? Right? Obviously, Benny and I had a whole conversation about how actually, the more you check your finger, the longer you will live, the better you will feel and the happier everybody will be. And he went back to tell us friend No, not gonna bleed to death. All right, one problem solved until the next one.

But my point is you don't know where the information is coming from. So these are a couple of things to figure out. And then what do you do? Well, I suggested that they talked to their kids care team, talk to their endo about this talk to their diabetes educator, because there's a lot you can do to try to avoid those lows. The most common suggestion is usually, to adjust your basal rate if you're using an insulin pump two hours earlier, you can adjust the insulin rate or just take the pump off right before you play and expect your blood sugar not to go down. It takes about two hours for those basal rates.

Part of the reason and I was very interested, I hadn't heard this before. Dr. Wolpert from the stage also answering this question said that there is often insulin on the end or in the canula. So even if you take off the insulin pump, that insulin is going to drip in over about two hours, which is one of the reasons why they recommend that you start adjusting two hours earlier. And I know you're thinking the canula that holds barely any insulin. But remember, this is a little kid, and there are very insulin sensitive adults as well. But when you think about a six year old, what does a six year old even weigh 50 pounds Maybe I should probably look that up. But you know what I mean? They're pretty tiny. Even a big six year old really isn't that big, and a little bit of insulin can make a difference. That's just one thing you can do.

Give a bigger snack, try to set things up a little bit better. Tell the coach, I mean, this is six year old soccer player, tell the coach he's going to play for 10 minutes, we're going to ease our way back into it to even play for more than 10 minutes. I mostly remember soccer at five and six year old as being five minutes of play. And then 20 minutes of snacking. I remember and I think I wrote about this in the book to the hardest part of soccer was that it was all snacks when they were little kids. And Benny never even ran around the field that much. His favorite part of soccer, was trying to stand as far back on the field. He only played when he was five and six years old, standing as far back in the field as he could kicking the ball as far and as hard as he could and trying to make a goal. And he did that a couple of times. So our soccer experience was a little bit different.

Something else that I thought about later but didn't think to suggest the time is talking to This child about professional soccer players with Type 1 diabetes. And I'm mad that I didn't think of this because this was a trivia question in my game show. I want to say last year, maybe the year before I do a game show every summer at friends for life, the big diabetes conference. And this was a trivia question. There is a footballer right a soccer player in Spain, Nacho Fernandez, he has type 1 diabetes, and he's the first person with T1D to score in a world cup.  Nacho was told that he needed to quit the sport that his days were done. footballing days were over when he was diagnosed at age 12. He said, No, thank you, I will continue to play and he did so and he has done another world stage. There are lots of footballers and professional soccer players with Type 1 diabetes. So you can look that up. If you have a child who's concerned you to find those people playing the sport or doing the activity. And there's a lot of articles about these people. Sometimes they'll give you tips and tricks and what they do and what they eat. It's really interesting. They can do it on a professional level, you got to have the confidence that your six year old can run around the field on a Saturday afternoon for a couple of minutes.

And then the final thing I'll say, and I did give this advice to the parents at the at this conference was, sometimes you just have to be the parent and tell them, it's time to do this. You're going to be okay. And we're going to go play soccer. I know it sounds harsh, but it's okay. And it's okay to say you are going to go low, and you are going to go high. And that's just diabetes. Maybe it's, you know, an age appropriate conversation about you are your own science experiment. We talked about that a lot with Benny, you know, we're not looking for perfection here. But we're going to learn from it this week. So we can do better next week. And we're just going to keep learning and learning. We're going to make mistakes. We're going to make different mistakes next week, but I'm here you're safe. It's fine. Let's do it.

And this is probably not a great example. But it's the first thing that pops into my mind when we say tell kids to do it sometimes. When Benny was potty trained. And please don't tell him I told this story. But when he was potty training, my daughter was potty trained in three seconds. She turned to that was it were done. She was Piece of cake. And Benny turned to I said to him, Hey, let's do this. Do you want to like, do you want to use the potty? And he said, No. So I said, Okay. And every couple of weeks, I would say, Is it time? Do you want to, you know, and he was saying, No, finally, when he was two and a half, I said, What am I doing asking my toddler? So I said to him, today's the day we're going to do it potty training. And he was like, fine, because right, and we did it. I mean, it was unbelievable to me looking back that I asked, stop asking, just tell them, and sometimes that can work. Now, obviously, you have to kind of figure out what feels right for your family.

And please, the best advice I think I gave here is to talk to your endocrinologist and your care team. But I really believe that if our kids are scared to do something because of diabetes, that fear is coming from somewhere and it can be addressed. So we it's up to us. Find the resources to get them over that fear. You're not a bad parent, if your child is scared, right? You're not a bad parent. If this lasts for a while, we're all just doing the best that we can. And sometimes, like with Benny at camp, the information, the bad information is coming from someplace that you don't suspect. You have these conversations. Keep trying, keep encouraging. Sometimes you're just gonna tell them this is how it is. What do you think? Do you have any advice for this family? You can always let me know I'm going to put this in the Facebook group at Diabetes Connections, the group you can email me Stacey at diabetes dash Let me know if you think it this is off base. If any of this is helpful. I am the World’s Worst Diabetes Mom after all, so keep that in mind if you're thinking about taking any advice that I offer, but I will say the health care providers in the room back to me up, I'm answering this question and added some information.

In fact, the best thing I almost forgot the best thing a pediatric endocrinologist stood up and said, I want to reassure these parents, although I think it really is the kid. I don't think this fear was coming from these parents. They really wanted to get him back on the soccer field. He said, I want to reassure you that in the thousands of kids I have seen and that I think he was like 30 years in practice. He says, nobody's ever passed out on a soccer field. And certainly, nobody's ever dropped dead on a soccer field. He said, it just doesn't happen. And we have to get over this fear that our kids are on death's door, when they're diagnosed with Type 1 diabetes. They are not. He was amazing. You know, those are important to treat. You want to take care of business, you got to do what you gotta do. But don't be fearful. I really wanted to cheer. I was so excited to hear him talk about this. Because I think a lot of endos are reluctant to say those kinds of things, and certainly not on a public stage like that. It was great.

So let me know what you think. Tell me what your opinions are on this. How would you encourage a kid To not be fearful and get right back into sports, he will a lot of adults are reluctant to exercise because they're concerned. So what's your advice?

Coming up on our regular episode next week, I am scheduled to talk to the CEO of Dexcom. I do have a lot of questions. I know you have a lot of questions as well. I will be putting a post in the Facebook group there as well soliciting and finding out what everybody wants to talk about. We'll see how much time I get and we will try to get through as many questions as I can. So that will be our regular interview show coming up on Tuesday. I'm Stacey Simms. I hope to see you back there then. And until then, be kind to yourself.


Unknown Speaker  12:45

Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged


Transcribed by

Jan 30, 2020

Sharing photographs of our kids on social media has become second nature. But what happens when we post photos of our children in distress? Stacey says stop. No more photos of your child in the hospital, when they're feeling sick or in distress.

What about "keeping it real?" What about fundraising? Stacey argues that there are better ways to accomplish important goals around chronic conditions like diabetes than posting photos which, ultimately, exploit and embarrass our kids.

Links referred to in the episode can be found in the transcription below.

Check out Stacey's new book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here


Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!

Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

Beta Transcription - please excuse grammar, spelling & punctuation

Stacey Simms 0:28
Welcome to a minisode of diabetes connections, one of our shorter episodes where I share some thoughts on one topic of diabetes management. I'm your host Stacey Simms, and my son was diagnosed 13 years ago just before he turned two.

Before I jump into this week's topic, which I really feel pretty strongly about. I want to give a thank you to Diabetes Forecast Magazine. We are in their January February issue as one of the top trending items for winter. It just cracked me up. When I opened, I get the magazine. So when I opened it, I laughed only because of the picture that they shared. I knew it was coming, they had asked to review it in the fall, but I didn't know that there would be a full picture. And I certainly didn't know it would be so funny. It's a woman, you know, with the book over her face, kind of like, Oh my god, I can't believe I'm reading this. And I can't believe what I'm reading.

But the funniest thing is that a lot of people thought that woman was me. It's not, but I can kind of see it. And it's so funny to think that even with social media and everything else, because this is basically a radio show, you probably have a picture in your head of what I look like, I always do that for people on the radio, and then you meet them and you're like, that's not what I thought they would look like at all. So if I get a chance to meet you, you can tell me what you thought I looked like. But anyway, thank you so much diabetes forecast. I really appreciate that. And thank you to everybody who's sharing the book. After you listen to the show today. You might say I really am the worst. But I really do feel very strongly about this.

So let's talk about it. This topic of sharing photographs, of children in the hospital, sick day photos. This is something that is very sensitive to a lot of people. But let's talk about why I truly think it is a bad idea to share what I'm going to call these photos of your child in distress. So for the purpose of this episode, let's say children in distress includes hospital photos, Sick day photos, a child upset about aspects of care, like getting a shot or an inset. Any photo that shows your child in a moment of distress or pain or hurt. We see these all the time on social media, a casual post of a tough night of lows, you know, and a sleeping child with a juice box next to them or something maybe a little stronger. You know, we're in the ER today couldn't keep fluids down and needed hydration. And then you see the child miserable in the hospital bed. We see these photos used by organizations and news outlets, Beyond Type 1, JDRF, Diabetes Daily. I am affiliated with a lot of these groups in terms of sharing content, right? You've seen - they'll post my stuff, I'll post their stuff. But I think it's important to call it when I see it. And every time I see it, I just cringe.

Now, I know what you're saying already, right? This is important. We need to show the real side of diabetes, right? We need to show more than the smiles when a kid gives himself a shot for the first time or you know, gets over the fear. If you listen to my longer show that airs on Tuesday, you know that every week we do a Tell me something good. And I very happily show pictures of those people who are featured each week, and I have been accused of being more positive and you know, too rosy sometimes. And, you know, but we're talking about realism. Right? Everybody says we need to show the hospital days they happen. We need to show diabetes isn't fair. Well, of course we do. Yes. Yes. We need to show that that is important. And I am all for realism. I promise it is not sunshine and unicorns and rainbows over here. But you know what we don't need to do to show that we do not need to exploit children. And that's what's happening here. These are kids who cannot give consent to be featured. They can't give consent. They're too young. And they have just as much right to their privacy as we do. How would you feel if someone took a photo of you at your most vulnerable, and posted it on Facebook?

Let's just back up and think about this. And I will get to when I think it can be done and how it can be done in a way that educates and informs and brings out emotion and still protects the child. But right now, let's say on these photos of distress, I did a little bit of research on this and there are a lot of articles about social media and photos. There's not a lot of research because this is Still so new. And when I see research, I mean real scientific published paper, that kind of research. But I did find some interesting articles. And I'll link all of these up in the show notes on the episode homepage. So here's an article from Dr. Kristy Goodwin, She's the author of “Raising Your Child in a Digital World.” She has a PhD in the impact of digital technology on children's learning. And she says that right now, sharing every part of our lives has been normalized by social media. But what happens really, when you dial it down is that it's a desire for a like, which is really a desire to feel connected, which she says is one of our biological drivers as a human, and it is needed to experience empathy. It does fulfill a purpose.

Dr. Goodwin says and here's a quote, “For many parents when their kids are seriously sick, they have lost all control and their world is literally spinning out of control. When parents go on social media, they have a sense of control over their life again, They can post things and choose exactly what aspects of their child's sickness that they want to post.”

Another article is from a pediatric hospitalist from St. Louis Children's Hospital, Dr. Shobha Bhaskar. She says, “We are all looking for support when our loved ones are not well, but when your child is running a fever or has a broken bone, please put down the camera step away from the screen. I'm sure if your child had a choice, they want to look their best to like you do. And your child would not appreciate a picture of them looking tired and rundown on the emergency room that we talk so much about patient privacy rules and rights. But what about the privacy rights of our little ones? Or do we think they just don't have any,” she says,
I'm going to take this one step further. Because I do think while we're on this topic of digital privacy, it's a good time to sneak in something else. In my Facebook group. I have a local Facebook group in the Charlotte area that I started, I don't know, maybe five or six years ago and when I wrote the rules and regulations for the group, the admin announcements. Here's what I wrote. “Please think twice about any pictures you post of your children. A picture of a pump inset on a naked toddler’s backside may be completely innocent, but there are creeps out there. This is a closed group, but there is no guarantee of privacy on any social media outlet. Please, please crop pictures like this very closely. So we can't tell what body part of it is for your child protection.”

And then I go on to say, “Same warning for posting pictures of your child in distress. This includes hospital pictures, pictures during illness, etc. You have our support and sympathy already, your child has his or her own right to privacy and may not appreciate being pictured online in such a manner. These pictures aren't banned. But take a moment to think about why you might want to post something like that.”

If you listen to carefully you might be saying Stacey what? They're not banned in your group but you just got on your high horse and told us how terrible they were? Well, they're not banned in my group, at least, and they are banned at some other groups. But here's why I felt like banning them outright would take away the conversation and the thinking, if you know that you're allowed to post them if you really need to, perhaps you'll stop and think about whether you want to a little bit more. And whenever anybody posts it, I usually send them a very gentle, private message, reiterating what I already talked about here in this episode, we support you, we love you, we're so sorry, Your child is hurting. But why are you posting that picture? Can you please think about your child's privacy? Sometimes I wait, because if the child's really ill, there's no reason for them to hear from me when they're in the hospital. Don't worry, I'm not direct messaging, a parent whose child is in a critical situation in the hospital and saying, could you please check your photo on Facebook? I mean, really, I'm not that cold. But I do if they're not in an emergency situation. I do do it right away, but it rarely happens in my group anymore.

What actually happens is we have conversations about why it's not a great idea, and what we're looking for, and what else we can do when someone's in the hospital. I mean, Benny had knee surgery a couple of months ago. And you bet I took pictures. We took funny pictures when they shaved his leg. I took a picture of his pump in the hospital gown. I took pictures of him and sent them to his grandmother, you know, going in thumbs up, that kind of stuff. I also took a picture of him coming out, because he was bundled up in so many blankets. He was so cold from the anesthesia coming out of it, he was fine. But that's not a picture he'd want me to post. But it was a picture he wanted to see later on. I knew he'd want to see how, you know, kind of funny he looked, but I knew he wouldn't want me to post it. So I'm not talking about not taking pictures, right. I mean, he had a terrible injury when he was about seven or eight years old, and we were in the hospital. And I took pictures. This was when we knew he was going to be okay when things had calmed down and he was stable. And I was sitting there with nothing to do feeling helpless. I took some pictures and sent them to my mom and my sister. And I showed them to Benny later on. I mean, they weren’t gruesome or anything. You know, if you're a longtime listener of the show, you may be thinking, I've never heard about this. And I'm not going to tell the whole story right now. You know, and I also it's a good time to point out that I don't share everything that's happened to Benny, I work hard to protect the privacy of my kids and my family in ways that make sense. So I have these pictures of him in the hospital at the time of that accident, but I didn't post them.

I did mention earlier, there are ways to do this. So how do you do it? Well, when he was in the hospital for his knee surgery, I posted a picture of I don't even know some of the hospital equipment, right, the IV bag, I posted something and I said, here's where you know, we're going in, everything's good. I'll keep you posted. That kind of stuff. And I've posted pictures of him drinking a juice box, you know, he's low and you can kind of see in his face he's look you know what to look for. Rather than a more dramatic picture I've posted on I use it to my presentations. Several years ago, I took a picture of his bedside table, which was just it was one of those horrible nights it was covered with juice boxes and test strips and, you know, inset changes, it looked like a war zone. And that conveys the difficulty of type one diabetes in a very similar way.

I posted this on my personal Facebook page, just to say, Hey, I'm going to be talking about this topic. And I was curious what other people in the community thought, and I got so much feedback. One of the pieces of feedback I got, which I thought was very, very interesting. And by the way, the vast majority of adults with type one that I heard from said, Please, please, please tell parents not to post pictures of their children. It really is something that I know people feel very strongly about. But I did hear from advocates who said, we need to get our cause across. We need to push we need to fundraise. I've two responses to them. One is we've been fundraising for JDRF and some other causes for 13 years. We have raised 10s of Thousands of dollars, we might be close to $100,000. If I sat down and added it all up, we have never posted a picture of Benny in distress. Has he been in distress? You bet. have I written about it? Have I talked about it? Sure. But we have found creative ways to show what goes on with diabetes. And I've never felt like I've exploited him to fundraise. And I know many, many other people who have raised a lot more money than me, who have never posted a picture of their child.

I also heard from people about what the DKA campaign. Now, if you're not familiar, there is a campaign and it's a great campaign to diagnose Type One Diabetes sooner. There are so many cases of children and adults diagnosed while they're already in DKA, while their lives are in danger. The most dangerous time to be type one diabetic is before anybody knows that you are and the thinking was, you know, we need to show the faces of this. We need to show what can happen so that laws can change. And as I'm speaking about this, I'm also thinking about the insulin for all campaign and People who are dying because they're rationing insulin, but I'm going to give you the example of Reegan Oxendine and this is a little girl here in North Carolina. She was a toddler. She died. She had type one diabetes, it was misdiagnosed again and again. Finally she was hospitalized but it was too late. And her story has been told several times, I'll link it up in the show notes. Previously Healthy was a wonderful bit of journalism, photojournalism done by the folks at Beyond Type 1, but I bring up Reegan because it actually illustrates the point I'm trying to make that we can affect change and we can get the point across even if in this case, it is a terrible point, without photos that are exploitive.

If you're familiar at all with Reegan’s story, what may come to mind is the most impactful picture in my opinion. And it's not her in the hospital, and it's not her looking ill and in distress. It's a devastating photo. It's just her mother's hands, holding Reegan's tiny little shoes. Her Shoes fit in her mother's hands. I'll post this picture. It's incredibly powerful. It's disturbing in its own way. But it is not exploitive at all. And it is a photo that really affected change. The law changed in North Carolina. Now is it as a strong laws everybody wanted and we've done episodes on this, I will link up more information on the episode homepage. As you can see exactly what happened. It's frankly, more of a recommendation for pediatricians but got the awareness out it got legislators talking about it. There are other cases of children and adults who have died. And they have been pictured online in many different ways. I am not going to judge those parents. You know, frankly, that takes us down a different road. I'm not sure how I feel about that. And it is certainly not for me to judge how those parents how those families react. However, that's not exactly what I'm talking about here. And I think we all know that I'm talking about the case of your child who's throwing up, run of the mill sick, you know, maybe has ketones that you're treating, who just looks awful. And you know, you grab the camera, because isn't that what we do?

It's so interesting to me how much things have changed. I mean, when Benny was diagnosed in 2006, nobody had a camera because it wasn't on our phones. Right? It never occurred to us to take pictures of Benny in the hospital with Type One Diabetes, being diagnosed because who would bring a camera to something like that? And you know what, I wish I had those pictures. Only because there were so many funny and touching and wonderful and and sad moments that I remember, but I'd like to see I'd like to see little baby Benny ripping off all the stuff that was on him. We had such a hard time keeping anything on him. He's like little baby Hulk pulling off the sensors and things like that. I'd like to see him maybe getting his first shot. He was so brave. I'd like to see his face. Sister hugging him, you know all the things that are in my head, but that I don't have a photo of. And it's because times have changed so much that we don't think about photos.

I have thousands of pictures on my phone, right? I don't even know what they're up anymore. We just take them in a screenshot and I save things and we don't even think about pictures anymore. But I'm telling you, these are pictures that we need to think about. I also think it's important to keep in mind and we all know this, but we don't really think about it when we're posting the internet is forever. And if you've posted a picture of your child in distress, child might be five years old, that photo will live forever. Your child will probably find that photo at some point in their life. So before you post another photo, just stop and think for one moment. I don't care if it's a closed Facebook group. I don't care if it's a private Facebook group. That's a bunch of bull. Nothing is private. In social media. The minute you hit post, somebody else can screenshot Somebody else can save it, somebody else can forward it, you have no idea where it's going, right? So just take a moment to think, why am I doing this? What do I need right now? If it's support and sympathy, I promise it's out there. If it's showing the real side of diabetes, I promise there's a way to show that without exploiting your child. And if the next time you post you're thinking, well, but think carefully, what comes after that. But what is stopping you? Is there a little bit of doubt in the back of your mind? If there is, you know, which other 10 minutes Think it over? You can't take it back once it's out there. I promise. There was love and support and sympathy and understanding and empathy and fundraising and awareness without posting these kinds of pictures.

Agree? Disagree? I know a lot of people feel very strongly about this. And I know when this gets posted, most people aren't going to listen to all the way to the end, they will see the headline and they will tell me I'm a terrible person. So keep in mind, I am the world's worst diabetes mom. You know, what do you think I really would love to hear from you. All kidding aside, we will put this in the Facebook group. I'll be talking about it on social media when the episode airs. And of course, I'm Stacey at diabetes You can find that a lot more about the show about the book. And about this episode on the website. Of course there is a transcription. all the episodes beginning this year, have that transcription on the episode home page.

All right, back to our regular full length episodes every Tuesday, and then these minisodes on Thursday. I'm Stacey Simms. I will see you back here next week. And until then, be kind to yourself.

Diabetes Connections is a production of Stacey Sims media. All rights reserved. All wrongs avenged.

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