The tables are turned this week as Stacey gets on the other side of the microphone. Kerri Sparling, writer of the long-running and popular blog SixUntilMe and now Children with Diabetes board member, interviews Stacey about her experience raising a child with type 1, what led her to claim “The World’s Worst” title and much more.
This is part of Children With Diabetes Celebrating Storyteller series. “There are some amazing storytellers in the diabetes community, and many of those folks have spent years honing their craft through blogs, books, and videos. Their stories of life with diabetes bring our community closer. Sharing stories helps make the journey with diabetes less isolated and instead paved with hope and camaraderie. (text from the CWD website)
Stacey was excited to be selected to be part of this storyteller series, and even happier to be interviewed by Kerri. You can watch the video here, read the transcript below or, of course, listen to the audio on this episode.
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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 One Diabetes available as a paperback ebook and audiobook at Amazon and at diabetes connections.com. This is diabetes connections with Stacey Simms. Welcome to another week of the show. I am so glad to have you along. As always, I’m your host Stacey Sims. This is a little bit of a different week around here because we released our regular Tuesday interview episode early. If you haven’t listened to that yet, it was all about the corona virus and basic information that people with diabetes need to know. Thanks very much to Gary Scheiner CDE and the director, founder of integrated diabetes services. He is always a very calm and informative presidents. He also has a great sense of humor, but I wanted to get that show out. pretty quickly, because you know, of course, as the situation is changing, podcasting is tough to get breaking news out. But we wanted to make sure to get basic information from a good source out to the diabetes community, because I’ve been seeing and I’m sure it’s only gotten worse, a lot of rumors and the beginnings of some panic. So I hope you listened to Gary or read the interview as well, because I put it out as a blog post with just that interview, as well as a transcript with the entire episode. And I hope you’ve been able to share that a lot of people picked up on it and I really hope it’s helped give you some good information. We’ll do more as the situation changes if we need to get more information out there. And then this week is a little different because I usually do a mini episode here, where I’m just talking about one topic kind of an editorial, but I’m going to be bringing you an interview that Carrie Sperling did with me now carry most of you know, wrote the long running blog six until me she retired that last year. She’s doing a lot of great work with children with diabetes. This is the group that among many other things, puts on those great friends for life conferences, the big one in July every year, smaller regional conferences throughout the year. And they do a lot of really good work in terms of information, and community outreach. So Carrie is doing some of these interviews and I was so excited to be able to talk to her. You may have seen it, they put it out as a YouTube video and I will link that right up. You want to stop right here and go to the video instead of listening. It’s the exact same interview except to get to see us and it made me realize I need to work on the lighting in my office. But the information I hope is good. We talked about what led me to write the world’s worst diabetes mom a lot about you know, parenting Benny, my son diagnosed right before he turned to 13 plus years ago now, privacy issues Carrie has shared this in her own life. You know, how much do you share online? How much do you not? How do you decide that? And it was really a fun conversation. It’s always a A little weird to be on the other side of the microphone.
Unknown Speaker 3:02
Stacey Simms 3:02
my comfort zone. But here we go. Anyway, here is the interview that Carrie Sparling did with me.
Kerri Sparling 3:09
I am here today to talk to Stacey Simms
Stacey Simms 3:12
about this, oh my goodness,
Kerri Sparling 3:14
I had to climb on my bookshelf to get it down because I accidentally put it on the shelf that I couldn’t reach without a stool. So thank you for giving me morning exercise for that. I appreciate it. But um, I Okay, let me make this more formal. I am very appreciative that you’ve taken the time to talk to me, and then we’re going to broadcast this to the children with diabetes community and then share it through our different channels. So thank you for making yourself available. I know this has been chaotic, getting them on the line.
Stacey Simms 3:38
This is what I get out of TV, when really we just need to stick to radio, but I really appreciate it Carrie. Thank you.
Kerri Sparling 3:43
My pleasure. And so I want to jump right in because I’ve already kept so much of your morning already. So just if you could for a minute just introduce yourself to the community that may not know you already so they can get a sense of who you are, and then we’ll get into the book.
Stacey Simms 3:54
Oh, sure. So my name is Stacy. My son Ben. He was diagnosed more than 13 years ago, which is bananas, time just flies, but he was not yet two years old. He was diagnosed with type one when he was 23 months. I have an older daughter Her name is Leah. She is three years older than him over there four years apart in school and I say that cuz she’s a freshman in college now and he’s a freshman in high school. I started a blog about a month after Ben he was diagnosed at the time I was working as a morning radio show host I had been a TV anchor and reporter that’s the I hate pictures. Because it’s all the makeup and the hair and the you know, I’m looking at myself like my headphones are so big on this is not good. I distract myself. Um, but then I started the blog and then four years ago, I started a podcast and then last year I wrote the
Kerri Sparling 4:39
book. That’s that is awesome. And so so you’ve been sharing a lot of your family’s experience and your personal experience with centered around diabetes, but going right into Stacey Simms, the world’s worst diabetes mom. So this title obviously feels a little tongue in cheek because you are clearly very involved, clearly clever and also on top of things that are going on in your kids. In your family’s health, so why did you call it this?
Stacey Simms 5:03
The book title came about because I had actually been working on a parenting advice book about raising a child with type one for a couple of years. And it was really boring. And it was really like had been done before. There are so many great books, especially, you know, from a layperson perspective, there are so many great books by medical professionals that can really tell you how to better manage, and I didn’t want to just say, here’s our story, and here’s what I think. And I was writing that book, but I wasn’t, I wasn’t jazzed by it. It was kind of just writing, you know, old blogs and my publisher and said, Oh, put your old blogs together. We’ll just put those out. You know, that just didn’t sound right. To me. No friends really resonates like old blogs like it. So I was in a Facebook group, having a discussion like I still do, I foolishly still go into Facebook groups because I want to help people and I get help to still and we had a disagreement and it got heated. I really I felt strongly that this was an okay way to manage and the person was so mean and said, you’re gonna you’re gonna kill your child you’re you’re terrible parent, you know really went there. And I just said, Well, I must be the world’s worst diabetes Mom, you and I slammed the computer shut and I walked away and I was like, Oh my gosh, this is it not not even think about the book but this is who I am I want to talk about making mistakes. I want to talk about living with less fear. I want to talk about not always being a slave to your beats. Are you okay? Do you need a juice box?
Unknown Speaker 6:33
Sorry, and beeping, then one of those days, but everything is fine. Thank you for asking.
Stacey Simms 6:36
But I just wanted to, I realized in that moment that I did have something to say. And it wasn’t just about the old blogs. And I went back I screenshot of the conversation because I thought well, maybe this guy is bananas. It’s gonna come after me. But I also deleted it. Because we didn’t need my anger out there either. It wasn’t just Hey, I was ugly too. So I got past that and I thought let’s talk about all the mistakes I’ve made because we Made a ton of mistakes. And it’s not a question about being a bad parent or a good parent, sure, you’re gonna make mistakes with your kids, whether they have diabetes or not. And let’s use those examples of mistakes to talk about resiliency and confidence and, and I think my son is better off for all the mistakes I made.
Kerri Sparling 7:16
I hope that applies to parenting outside of the realm of diabetes, because I’m not a perfect mom myself. And so it’s reassuring to hear that stumbling leads to success, even if it’s a modified version of the success you thought you were going towards. So I really appreciate that. And I also like the fact that it’s not like here’s how to be perfect by Stacey Simms, because that really puts people on their heels like you can’t take advice from someone that you have on a pedestal it’s always a lot easier to have a peer to peer conversation and that’s why I feel like your book reads through it very a resonated for me and I’m an adult the diabetes not raising a child with diabetes but reading your perspectives gave me a lot of insight on maybe conversations that my mom and I never had or my email just think the cross Can you see that when it comes across You know, you’re supporting the note cuz he’s just some weird emails. But I just have a couple notes. I just wanted to look through this. But when I was reading through the book, there’s the story of the first night that you guys are home with, with Benny. And, and it hit me really hard because I was thinking about my own two kids. And like I said, they don’t have diabetes, but I was putting myself in your position. And it’s so easy to be the person with diabetes from my perspective, but it is very, very different to be the person who carries just as much, but it’s like 10,000 feet away for so much of the experience. And so do you think that it’s important to have those stories shared like stories like yours and stories from adults with type one, so that we can kind of create a, an amalgam story sort of thing, like, why is that important?
Stacey Simms 8:37
I think it’s a great question, because it’s it’s so important to recognize that the two experiences run in tandem, but they are so separate, as well. Right? We’re never really going to separate them. We can’t pretend they’re the same. So a person with diabetes is having one experience a parent of a child with diabetes is having a totally different experience, obviously tied to By diabetes, and I, you’ve already said, Oh, I think it’s you know, it’s worse to be the parent, you’ve implied that by something you said, which is fine. I mean, I almost every adult with type one I know, says all my mom, it was so much harder on her.
Kerri Sparling 9:10
We’re not saying it to make you feel better. We’re saying, we believe that fun. Yeah,
Stacey Simms 9:14
I understand. But I disagree, because I’m not beeping, and I can walk away from it. But at the same time, it’s not a question of comparing, right. And I didn’t mean to put you on the spot. I’m not saying that you’re doing that. But I think it’s really important that we see these experiences as equally important, but very different, but then tied together. So telling all of these stories. I’m hopeful that Benny, when he gets a little older, we’ll look back and read it. And he knows what he knows the stories we actually shared that ahead of time. We talked about what I could put in the book, but I’m hoping that he’ll see it and kind of think, Oh, well, that was not my experience, but I’m glad to know it.
Kerri Sparling 9:50
Well, of course and you were saying it’s not it’s it’s not about comparing them. I think it’s about making a cohesive story around them like my low felt like this, but it looked and felt to my mother like this and meshing those two stories together together gives us a broader experience touch point. And I think that’s so important, especially for like a teenage kid who might pick up your book and read it. And when they’re in that angsty, angry part of diabetes, and they might be so furious with their parents to get your perspective on that might help segue a good conversation with their own parents. That’s why I don’t think this book is just for parents of kids with diabetes at cross collateralize is the whole community you know? I don’t know. I think that’s accurate. I’m gonna toot your horn for you that way.
Stacey Simms 10:28
One thing I think it’s really interesting to talk about is you mentioned like the not perfect parenting thing. And I think it’s we’re under pressure, regardless of diabetes is parents right? You can’t win you really can’t. But I also think it’s funny when you look at a lot of parenting blogs and parenting writings. It’s either I’m a perfect parent and you should aspire to look like this. It’s perfect Instagram photos or whatever, you know, look like us do like us eat like us. Or you have the oh I don’t know what I’m doing.
Unknown Speaker 10:54
I’m so crazy on motherhood is that you know, I’m a man I look at my and I really that doesn’t speak to Neither,
Kerri Sparling 11:00
right we are middle lane.
Stacey Simms 11:02
We are smart, we are strong. We are sometimes a mess. We are sometimes perfect. And I really I’m not. I know that sound like I was making fun. You know what I mean? If these archetypes, especially women we get put into, right. I’m a hard driving success story or I’m so clumsy. I fell into my man, you know, I mean, I hate that. So I tried to really in this book, kind of encapsulate, you know who I am, but who I think a lot of other moms are too, right. competent, confident,
Kerri Sparling 11:29
but not having it all together. Now might be an important part to bring up the fact that I’m wearing normal clothes from the waist up, but sweat tears from the waist down. So like I think that sort of is the it’s the template for that. They need you there we go. Wait, you you would actually skipped ahead to something I wanted to ask you about. Sorry. Should No no, that’s fine. This is good, though. When you’re using the questions, I know and I don’t normally write my stuff down. But I’m organized today. Um, but yeah, we talked about when you first started sharing your stories, and Benny was home that first night That sort of stuff. And you used to write about Benny’s personal experiences and yours. And as he’s gotten older, and his experiences become more his, you’ve said that you’ve stepped away a little bit from telling his stories and have embraced. I can’t describe it for you. But like, what, what’s it like to decide to share x in the beginning, and what makes you transition to the y?
Stacey Simms 12:19
I think it’s such an important conversation. It was interesting in the beginning, and I do wish that I’d given my kids just a little bit more privacy by changing their names, or giving them nicknames. The problem for me was I was already on the radio. And we had a show where it was mostly political news. But we did talk about our personal lives a little bit. So my listeners knew when I started at that station, I had a one year old daughter. And then when I was working at that station, I was pregnant and then I had a baby and here’s Benny in the hospital, you know, it was a different experience than just blogging. So it didn’t really occur to me at the time and social media. Certainly what it is now isn’t wasn’t then what it is now. It was a different experience. But when you have a toddler, you have a baby, I mean, even going back, I was Careful at the time not to overshare I but as he got older you realize, you know people are reading this people are looking at this. There were there were only some experiences that I felt comfortable sharing and it wasn’t just the good stuff, right? We shared things that things went wrong. I thought that was important. But I’m I’m on the record. I sound like a broken record. You know, I don’t share my Sunday one. See, I don’t have that. I don’t like you know, do not share photos of your child in distress. You know, no hospital pictures. I wish I had pictures of him in the hospital and he was diagnosed for me. Sure. But you know, we didn’t have our phones with us. 24 seven at that point, especially didn’t have cameras on them, which sounds so ancient.
Kerri Sparling 13:43
I mean, this is what it is right? Like when I was diagnosed with diabetes, I had to pee in a bucket to test it. So like things had to not a bucket. I mean, let’s be realistic about this. But you know, things have progressed and with it the the conversation about what to share and not to share and so, I mean, you talked already about not sharing his anyone see? And I think personally, I am on the same page with you about that no one needs my personal data points because their mind in their personal, but that there’s a broad spectrum of decision making processes around that sort of stuff. So what made you decide not to do that?
Stacey Simms 14:14
Well, I think I’ll just put a caveat in there, I think, to not mindlessly share, right? Sometimes it makes sense if you’re trying to talk through something or get advice or share a situation or, or say, hey, look at this difficult situation we worked through and now we’re celebrating I mean, just mindlessly is the word I tried to use about it. But what changed was when he was about seven, I think I read something by Moore McCarthy, who is a mentor of mine, and she’s longtime blogger, author, I mean, yeah, faculty, you know, I probably saw her speak there and got this information, but she really encouraged me and others to think about it. And once I stopped to think about it, I realized there’s no reason for my seven year olds health information to be on the internet. I’m not posting my weight and my cholesterol. And you know, my blood pressure. It’s the same thing. We don’t see it that way, right? But it really is. And that once I thought about it, it changed everything for me and I started sharing more, you know, great endo visit no changes, everything’s on track or great endo visit. We had a whole conversation about changes we have to make sure sometimes like bad, you know, bad can be good when you get the information. Yeah, I love the finger quotes.
Kerri Sparling 15:27
But I feel like that’s an important part of it too, because it’s not truly bad or truly good. There’s a right
Stacey Simms 15:32
dial up stations get better when you get away from the numbers. I agree. You know, you can you can have more in depth about how you’re feeling and what advice you’re looking for. And that sort of thing. So I’ve shared with friends when I’ve said old I’m upset about this, or can you help me with that? That’s different.
Kerri Sparling 15:46
Yeah, no, of course because that’s your actual personal life but broadcasting it to the broader internet as a different person retired. As a kid who grew up with Type One Diabetes, that’s my perspective. And yours is parenting a kid who’s growing up with Type One Diabetes. How How do you feel about I mean, you see a lot of memes from parents about parenting in general where they have like the curlers, half in their hair, and the bathrobe and the coffee cup dangling off of one arm, and they’re like, parenting is so exhausting. And that feels universally haha. But when I see that same sort of meme applied to diabetes, like, this is what a parent of a kid with diabetes looks like. And they just look bedraggled and rotten and exhausted and as an adult with type one that applies a guilt to my experience that I didn’t see coming. And so I’m just curious what you think about things that paint diabetes in a light that maybe they don’t realize is shining directly on their kid. When parents tell those sorts of stories? Yeah, it is a great question because the reality is, maybe you didn’t sleep that great last night, right? Maybe you were up three times treating a low. But are you talking about me because that was my nightlight?
Stacey Simms 16:49
Well, I do have Do you have a baby can still because there was a signal in my house. No, I
Unknown Speaker 16:52
Stacey Simms 16:55
It No, I’m talking about the parent, right. So if a parent has to do that, and then wants to go on from But the next day and start talking about how hard it was. I can understand that. But I do think and my favorite meme about this and I don’t think it started as a diabetes parenting meme. I think it’s just a parenting meme. But it’s like, you know, an 87 year old woman, and that it says like, well, parenting is hard. You know, my I’m celebrating my 23rd birthday tomorrow. Money. But I do think that you’ve hit it on the head, that’s going to be my would share about diabetes. I think it’s difficult to know where to draw that line. And we don’t, we don’t think because what we’re doing not to get all psychological. But in doing some research for a recent podcast I was doing I found a great article about this and I can send you the link but when we’re sharing things like that we’re looking for likes, right because our brain As humans, we need support. We’re looking for community. We actually like to get the good Brain Stuff going the dopamine or whatever, when you get the right weights real and physical and social hosting, something like that, you know, is going to bring in more of that. And it’s not made up. It’s not fake. Oh, yeah.
Kerri Sparling 18:09
Feeling it all
Stacey Simms 18:10
really happens. But there are better ways of doing it. I think and as you were alluding to, if we, as parents of kids with type one, don’t listen to adults with type one, we miss out on this kind of conversation, because no seven or eight year old is going to say, you know, it kind of hurt my feelings or I, I really processed some guilt when you posted that, right? They’re not gonna say that they may not even realize it, but we need to be mindful of that kind of stuff. And I think it’s fine to have fun and you know, maybe share that privately. But um, you know, I I’m really try hard not to make diabetes, the focus of everything and not show that guilt because that’s just parenting anyway.
Unknown Speaker 18:48
Right? It’s just an added thing.
Stacey Simms 18:50
It is just an added thing. It’s like not to get too far off topic, but when people are freaking out about sending their kids to sleep overs, sure, right, because something might happen when I was in second grade Jennifer Look, it’s like At my house, we had a babysitter. We didn’t eat that my parents and she put her leg on my bed. It was the 70s. It was like some metal crazy trundle bed. She cut her leg bad enough that we had to go to the ER and get stitches.
Unknown Speaker 19:10
Oh, wow. How do you prepare for that? I don’t think you do.
Stacey Simms 19:15
Things happen on sleep overs. emergencies happen. Parents who say I’m gonna have sleep over have to be prepared for weirdness. And to me diabetes falls under that category. But that’s a decision you have to make. And I think it’s the same thing with that kind of a mean, you kind of have to make the decision of, there’s a difference between, everything’s fine, everything’s fine. Everything’s fine, which I’ve been guilty of for a long time. It’s fine. It’s fine. I’m not gonna worry about it. I’m good. I’m good. I’m good. I’m good. I don’t need any help. I’m fine. And there’s a difference between that and what was me everything’s terrible. Like, like sucks and you know, oh, my God, diabetes is the worst. You gotta you gotta find that medium and you’ve got to, at least to your children, I think it’s important to fake it, but be careful about stuff like I might.
Kerri Sparling 19:57
I like what you said earlier because I read a lot about my fulness and being mindful and making sure that you’re mindful, but the fact that you’ve cited mindlessness as a potential alternative to that, like, don’t be mindless, don’t share mindlessly consider the you know, the course of your actions that you’re taking and how it might influence your kid. That is a huge takeaway already. For me from this conversation. It doesn’t apply just to parenting diabetes, I think it applies to the whole mess being Don’t be mindless about the things that you’re sharing. I think that’s a really, really good tip.
Stacey Simms 20:26
It’s funny because I stink at being mind. Right? You’re like, Oh, no, take your time when you eat and drink your tea and fever and, you know, take them home. I really don’t think I can do that. But I can take an extra 10 seconds and think do I want to post this photo?
Kerri Sparling 20:39
Of course, not. In a mindfulness exercise once I was asked to spend one minute eating one m&m, and it was really strange experience and I’m sure it was really effective, but for me, it made me feel very stressed out. We can get into that later, but because we’ve talked a lot about parenting, and I’m sorry to be going back to my notes here. You You talked about it experience where you and your family are you at least and Benny and Leah met Nick Jonas, and how this was truly more of a thing for Leah, your daughter than it was for your son who is the one who has diabetes. And there’s something that you wrote that really stuck with me because I feel like parenting a kid with diabetes, that parent is acknowledged a lot, which is fantastic. The child with diabetes is acknowledged quite a bit because they become the focal point of that narrative. But the siblings of kids with diabetes end up on this weird purgatory peripheral area, and they’re not often acknowledged. And you wrote that at the end of meeting with Nick Jonas, that you had said the diabetes was in our lives. But she Leah knew we wouldn’t let it take over she knew she wasn’t going to be left behind and reading that now gives me goosebumps for reading it then also did too because it acknowledges a group of people that need just as much support as I do as a kid, as you do as a parent. And when I think about children with diabetes in the organization, the programming really speaks to that as well. It’s not just for parents, it’s not just for adults with type one is for the siblings. It really embraces the whole family. So because your wrote that awesome line. Could you say a little bit more about supporting a sibling
Stacey Simms 22:04
and, and the children’s diabetes? I mean that friends for life Leah has come. And Mr. Summer schedules are always crazy. So it’s rare that either one of my kids can come and like I still go, but I had a I had a blast, and she didn’t really think she would. She kind of came as a favor to me.
Kerri Sparling 22:21
But she was when she was I
Stacey Simms 22:23
think she was 14 or 13. She was a teen. So she was in the teen programming. And you know, Benny was still too young to be in that programming. So they were separate. Yep. And she knew she was gonna get to go to a Disney park, which was amazing, you know, when state of fancy hotel with me and it was great. And she I don’t think I saw her much. You know, she thought, Well, I’m not gonna do this. You know, we’ll see how it goes. And it was wonderful, but it’s really hard. You know, that’s one of the few programs that there is for siblings. When when he was diagnosed, we got this reminder really off the bat and it did help us set the tone he was in high But on the Saturday, and on Sunday, I had an event that I had planned. And I do talk about this in the book. But it was an ice skating event uptown. So uptown from my house is about 45 minutes. Okay. And I was the only link between these two groups. It was a group from near my house and a group from your my work. Well, the skating rink was my work. They sponsored the rink. I didn’t. I was working at a radio station that sponsored the rig. And I knew that somebody could take care of it, but it was going to be difficult. And Leah reminded me like we’re still gonna go ice skating, right. We’re still gonna go ice skating because I live in the south. Ice skating is exotic. No, it really is. I grew up in New York. I’m like, oh, there’s never been she likes frozen ice that you walk on. Amazing, right? Magic. So I said to my husband, I’m like, We’re going he’s like heck yeah, go take her and he stayed the hospital and that was the day after my not your two year old was diagnosed and I’m thinking is this the right decision? Is this this is a terrible This is the world’s worst diabetes mom because here I am leaving the hospital. But as soon as I I got outside I knew was the right thing. And that was the day that we said we can’t let this take over our lives. So you have to be careful. Like, I don’t I don’t I say this not to judge but just again with that mindlessness and that mindfulness or you know, if you signs in your house that are like in this house, we’re blood sugar fighting, you know, ketone, chicken, whatever it is, look, the science we will have in their kitchen. Nobody, I mean, if they’re all diabetes related, of course, yeah. You know, have to be kind of careful unless you also have ice skating, hockey playing, you know, unless you want to have a litany of everything your family does. You know, I’m mindful of like, how many t shirts do I actually wear that say diabetes stuff on them all the time. And making sure like, I have stuff from my daughter’s programming, and frankly, from Benny’s programming that’s not diabetes related. It’s that kind of little thing I think that siblings really pick up on, like, if you name your dog or your cat or your goldfish after diabetes stuff, you know, it’s a family pad. I mean, if it’s a diabetes alert doc that might be different. I just think these are things that as simple We kind of forget, you know, they’re always they’re always watching and they’re tallying. And you have to be honest with them that diabetes gets more attention. But with Leah, just having the conversation over and over again really helped. I mean, when she was 15, she and I had a great conversation about it. She said, I was really upset about it. And now I get it. Oh, it was amazing. I mean, he probably is back to being upset about it now.
Kerri Sparling 25:22
But it was great. You guys can talk about it is really nice, because a lot of times that animosity isn’t voiced, and nobody has areas to sort of air their concerns. And so it’s good that you give her space and like we mentioned in friends for life, people have that space to get that stuff out there. Oh, yeah.
Stacey Simms 25:35
I’m the over communicating Mom, you’re like enough.
Unknown Speaker 25:39
Talking to me.
Kerri Sparling 25:42
We’ve talked about community, we’ve talked about sharing, we’ve talked about Facebook and the pluses and minuses of that sort of stuff. And it and it led me to the story that you had written about Benny losing his insulin pump. And then after that, you would, which I think is an amazing discussion about the cost of supplies, and how even small Children are mindful of the cost of things. And we’ll get back to that in a second. But after that story you had mentioned, places to find support for when you have gaps like that, or you have issues like that. And I would love some perspective from you on as a parent whittling down this massive diabetes online community that we have access to, to a manageable size that kind of caters to what people might be looking for, like, advice for someone who’s just jumping in and saying, there’s so much how do I find what’s best suited for me?
Stacey Simms 26:26
Yeah, absolutely. I think the best thing to do is if you’re already online where where do you like to be? Right? Do you like Twitter? Do you like Facebook? You like Instagram, Pinterest? You got to find your house, like where do you like to live? And then once you’re there, find your people. And let’s have a Facebook cuz that’s probably the biggest for parents. I know Instagram is a lot bigger than the last couple of years. But Facebook groups are still really really active for parents. And my advice there is be careful again, not to turn your Facebook into diabetes book which is what happened to me. I am in I am in 50 Five Facebook groups about diabetes. Now granted, I joined Facebook in 2008. So I had around for a while.
Kerri Sparling 27:07
Well, I’m just it was the look on your face. It wasn’t like I’m so proud to be in 55 horrified to be in 55 it was a real mashup of the both
Stacey Simms 27:15
emotions. And that’s exactly how I feel. So, because I’m like, I want to be here. And I like the vibe of this group. I like the information in this group. And I like to put my podcast in this group. But what I did was I muted the majority of this groups and that has been phenomenal. If you’re not familiar as you’re watching or listening. It’s very easy to do, you can just mute the group. I think you unfollow the group might be the technical term, but you don’t leave the group. So that way, when you want to dip into those waters, it’s up your time. And my Facebook feed went back to being my real life, which is my friends, the stuff does the dumb things. I follow in a little bit of diabetes, and then I can jump back in whenever I want to. And Facebook Of course will find you you know if there’s something interesting, put it right in your face, on Twitter if you’re there, which is Just a crazy place to be the best, just all the politics and mess but DSM a is still your diabetes, social media advocacy is still the best hashtag on Twitter. They still do the Wednesday night chats. Those are wonderful. Instagram I’m struggling with just a little bit only because I like the realness of the stories and things that people I know that out. But I’ve been trying to follow more people and I’m not knocking anybody, you’re all wonderful and beautiful. But I have talked to two influencer type people and I complimented one of them. That was such a beautiful shot in your hair looks so good. And you know, she said, Stacy, I have a hair person and a photographer.
Unknown Speaker 28:40
Diabetes person. What
Stacey Simms 28:43
if I had if I had a hair person and photographer I could change the world. I do wear pants. I’d be wearing pants. I would have better headphones because wearing Benny’s beats I thought these would be smaller. You have cute little earbuds I don’t know I haven’t no here but I studio cans that are like this big I thought would be even more Your cancer headphones in the biz. But I just, you know, I can’t do the influencer thing. So you but you as you listen, you might love that that might be your thing, go for it. But I think you have to find where you live where you where you feel comfortable, where’s your vibe, and then you’ll find your people but don’t let it get overwhelming. And if you find somebody that wants to call you the world’s worth diabetes. You walk away walk away unless you have a book. But I mean, really, it’s not worth the argument. If someone tells me I’m wrong, I’m not going to change their life probably. Maybe I can help. I’ve got a good discussion going in my local group right now about finding babysitters. There are people locally I run a face for parents in the Charlotte area. Okay, started a few years back and it’s been amazing. And there’s a discussion right now people like I will never be able to leave my children alone. Yes, you will. And here’s how. And so we’re trying to help each other kind of get past that right. So
Kerri Sparling 29:59
that’s See, I feel like the internet is fantastic. And it’s done such a great job of connecting people who don’t live anywhere near one another. But when it comes right down to human connection that people really crave in those moments of need, that hyper local stuff is huge. You can recommend a babysitter to me, but they’re of no use to me in Rhode Island. But for the people who live down the street from you, they can go and call that person and they can actually hire them out. And that’s, that says a lot to about the diabetes community how willing people are to give those really harder and resources and to share it with their,
Stacey Simms 30:28
with their people. That’s beautiful. It is absolutely amazing. And you think I mean, I know this is a CWT interview, but the first thing that comes to my mind is going to that conference or any of the conferences that they put on. I don’t even worry about what I’m packing my pack everything Ben he needs but you know if he’s anything, somebody’s got it, and they’ll have you a 2am you know, it’s just an amazing community. And I don’t know, I think especially locally, knowing that we might see each other at the grocery store. Like that Facebook group is probably one of the nicest groups. I’m in
Unknown Speaker 30:59
You’ll have to own what they say, right? Because they may see you over avocados.
Stacey Simms 31:02
I know who you are, right?
Kerri Sparling 31:06
We’ve run through the questions that I had structured for the book and my preparation. But is there anything else that you feel like it would be really pertinent to share with the specifically the CW, the audience,
Stacey Simms 31:14
one of the things I’ve learned just doing the podcast and now on this book tour that I’ve been on this year, it’s just fascinating as the technology gets better and better, and you know, Benny’s on the newest software from tandem, and, you know, there’s all sorts of great stuff coming out. It’s interesting how the change from 13 years ago seems to be almost more fearful. And it’s not that it’s not so much that people are afraid to let their kids do things. It’s that they’re afraid to let their kids get out of range. I think I’m seeing that a little bit among adults as well. Now my adult view is skewed to a lot of the influencers and people that you know, sometimes I see in person, but there’s this that’s another thing with the the world’s worst is, you know, talking about staying in range was never part of my repertoire was like go play football, and we’ll figure out how to put diabetes in the picture. I’m learning that a lot of people have. We have amazing technology. It’s changed so much just in the last few years. And we need to encourage each other to use that technology to live fuller lives, rather than use the technology to post graphs. And it’s just remarkable to even say that to a parent who was diagnosed, compared who was diagnosed, I mean, I’ve gotta watch language. No, I
Kerri Sparling 32:23
will go back to that in a second. You’re right. You are right. My mommy got me it was a wee thing. Just, it was a different version of wheat. So that’s a very fair statement.
Stacey Simms 32:31
I think with a 15 year old to I’m really trying to change my language over it’s hard
Kerri Sparling 32:35
so of him. So I mean, his health is is your mental well being right. I mean, there’s, there’s no separation there. It’s sorry to go on a tangent.
Stacey Simms 32:43
Well, this is a great discussion. This could be for another time too. And we’ll talk more in person, but I think it’s his diabetes. And I’m it’s the family is affected, but it’s his. So that’s what I mean. And I completely lost Richard.
Kerri Sparling 32:56
Oh, wait. I was waiting to with that. I started ranges range, using technology to your benefit. I sorry,
Stacey Simms 33:06
I got all I get crazy bad language right now it’s it’s really hard for me to change over. But I just feel like we’re finding that this the state of the art. I mean, I know what I’m saying in my community, we have a pilot program where your child is diagnosed, and they give you a dexcom in hospital when you go home. So it sounds great. But the problem is that there unfortunately, I don’t know there’s enough education and I’m not slamming the CDs and dexcom here has nothing to do with that. It’s just the diabetes is hard. And so see everything from the beginning. Maybe you get used to that, but then the dexcom comes off and they don’t wanna go to school, or they don’t want to go to the waterpark, or they don’t want to go on that that field trip or that overnight because they’ve never been without the depth causeway. And we’re more and more and more of that, where I would be like, Oh, I hope your inset still on, you know, an hour but you learn resiliency, you learn stuff like that. Yes, the worst. And that’s the story. When he was three, we were at a waterpark. That’s in here. Instead came off and his blood sugar went really high because he was terrified of shots in sets at the time. And I thought, you know what this is going to be an hour to he’s going to be fine. The long term, my indices stuff like this is okay, as long as we don’t do it a lot. And maybe the running around will bring him down. It didn’t, you know, so he got with Ari was 400 we change this instead, we got him home, he was fine. No ketones, blah, blah. But in my local group, someone had posted my kids dexcom came off, I’m not sending her the waterpark. I’m like, come on. Yeah, I got it. Right, we got to use this stuff to live better not let it restrict us long way of getting to that point. And that’s really where I think I am right now. Because, you know, the technology is fantastic, but your stuffs gonna fall off. Things are going to fail. You know,
Kerri Sparling 34:44
you know, you have to continue on several life after diagnosis thing.
Stacey Simms 34:50
So it’s been a long time. Permit this year, I can’t believe it. Oh, and then you get to write about driving with diabetes, which is a Book unto itself, start, the book pretty much stops in sixth or seventh grade. So I’m not going to say that I’m an expert at high school yet, because I’ve only had one kid go through and she didn’t have diabetes. So
Kerri Sparling 35:12
Nick Jonas at one time, so there is that there is that kind of coasting through. But um, but and so you have just been so generous with your time and your perspectives, I really, really appreciate it. And if you could just do me one solid real quick and let people know where they can find you online and where they’d be able to pick up a copy of your book. And obviously, we’ll be including links to that, you know, and all the notes that are around this video, but hearing it from you is great.
Stacey Simms 35:34
Oh, thank you so much. I think the best place to go is the podcast website, which is diabetes dash connections.com. And then from there, it’ll link to every place else the book, the podcast, the blog, blah, blah, blah. And
Kerri Sparling 35:45
so what’s the actual URL for that
Stacey Simms 35:48
diabetes dash connections. com. Perfect. And I would love to do a book giveaway.
Kerri Sparling 35:55
Oh, we would love to have a book giveaway so
Stacey Simms 35:57
I can give away. Let’s do this. Let’s do a paperback And let’s do an audio book. Because the audio book was really fun and interesting to do. If you ever do an audio book, it’s quite the experience, like reading a dramatic play. It was very strange, very strange, totally different experience than writing it. But we can do a paperback giveaway. And then the audio book, that would be my pleasure, thank you.
Kerri Sparling 36:18
That would be amazing. And I will put a link to the giveaway page in this video and on the web page. But Stacey, thank you so much for your time for your perspectives for what you’ve given to the diabetes community and just being my friend, I appreciate that.
Stacey Simms 36:30
Thank you for giving me an excuse to put lipstick on today. The giveaway is open until March 20. I will link up all of the information you need. It is at children with diabetes at their giveaway page. You have to go there you can’t do it on social media. We’re giving away a copy of the book in paperback and an audio book as well. I’m really looking forward to seeing everybody from friends for life and children with diabetes at their conference coming up at the end of this month in Indianapolis. I’m hoping the travel plans you know stay the way we hope we are watching The virus situation I’m really not sure what’s going to happen with travel. But Fingers crossed right now that we are able to do this. And I really appreciate partnering with them on this giveaway and being selected for one of their storyteller interviews. So it’s really fun. Okay, our next episode next week, we should be back to normal around here minimum normal being a relative term with me. But our next episode is going to be focusing on Lilly, Eli Lilly announced almost two years ago now that they the makers of human log are getting into the pump and pen business. So we will talk to them about how they’re progressing on this connected system. It’s a smart system and they are partnering recently announced with dex calm, so we will be talking to them about the progress they’ve made and what it means for the industry. That will be next Tuesday. Okay, I’m Stacey Simms. Until then, be kind to yourself.
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