#003 The Time I Decided to Share
This episode wasn't easy to research but the end result was a better understanding of how Arden's Day went from a type 1 diabetes advocacy website to the patient blog that it is today. Spoilers, it was a video of Arden describing a low blood glucose induced seizure that revealed the power of transparency and all of the good that comes from not hiding even the ugliest truths about living with type 1 diabetes.
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SHere is the cleaned transcript for Episode 3: The Time I Decided to Share, with speaker names bolded and source tags removed.
Scott Benner This is the Juice Box podcast episode three. I'm Scott Benner. Today, we are going to delve into the very beginning of my type one diabetes parenting block called Arden's Day. I let's see where to start. Okay.
Scott Benner My daughter Arden was diagnosed with type one diabetes a few weeks after her second birthday in 2006. Just about exactly a year later, I began writing about my experience as a parent of a child who has type one online. But I I didn't do it the way you're thinking of it now in 2015. In 2015, you hear somebody say I started a blog and you go, of course, did. Everybody has a blog.
Scott Benner I've been told that there are approximately 4,000 personal type one diabetes blogs on the Internet, which is amazing here in 2015. But back in 2007, I didn't really know what a blog was. I had never read one, although there were some in existence. There weren't many. And the only real reason I found blogging was because there was this piece of software on my computer called iWeb.
Scott Benner And iWeb allowed you to put your thoughts down on your computer and share them online. And that seemed like something that I wasn't really excited to do, but it seemed like something that I needed to do. So Arden's Day wasn't called Arden's Day when it started. It was just it was just my attempt to reach out to my family, and extended friends and and my circle, you know, the people that that we knew and explain type one diabetes. That that's all I was looking to do.
Scott Benner If you have type one or if you're the parent of a child with type one, know exactly what I mean. There's this whole life, this whole kind of microcosmos of of diabetes that other people just don't understand. You know, I find myself saying it all the time. Come live at my house for a week and and you'll leave running scared, you know, like those, like the Normies did from the Munster's house. You you will you will run away and have a completely different perspective on on what's going on.
Scott Benner So I thought, okay. I'll I'll start I'll start telling people about it, but I can't go door to door. You know? I can't spend my whole day calling people on the phone explaining. How am I gonna get this out?
Scott Benner I thought about I used to do this thing for fun. I would get up in the morning, and while I was kinda getting myself together, I'd read the news. And I'd pick a couple of news stories and just make fun of them and email them, you know, messing around to a couple of friends. Now you do that on Facebook. You get up in the morning, you think of something witty to say, and you send your witticisms out into the world on your Facebook status.
Scott Benner But a long time ago, I was doing that through email. And I remember that as being pretty, you know, a a pretty viable way of reaching people because if somebody thought it was funny, they'd send it somebody else and, you know, before you know it, there were you were getting emails like, Put me on your email list about when you make fun of the news. And I thought, Well, that that's a good way to get this information out, but I can't send these long, you know, full emails to people about diabetes. I'll use iWeb. I'll I'll write my little stories, you know, little bits at a time, digestible bits at a time, and then I'll send out an email and let them know it's there because how else, you know, in 2007, would you let someone know there was something on the Internet for them to read?
Scott Benner So the day I picked to tell people was just a regular day. We got up. We had to go somewhere. My kids had to go to the dentist. We were gonna have lunch, etcetera.
Scott Benner We had to drop something off at someone's house. And I remember leaving the dentist office and thinking Arden's blood sugar was okay. You know, this was before CGM and all that stuff. She she was good. She was in a good spot.
Scott Benner And we left and got food. And I do remember thinking she needed the food. I grabbed the food, and on the way home, I just tried to stop at someone's house and drop something off. Just it was
Speaker 2 an errand I had to run.
Scott Benner And I think we just got caught in the driveway talking for a couple of minutes, you know, and there was no insulin involved. I hadn't, you know, this is well before I would have had the nerve to give insulin before eating. So this was just the normal course of the day. We get home and we try to eat and I realize that Arden is lower than I expect her to be and I test her and I don't remember how low she was but she was low And and looking back now, I can see she wasn't just low. She was falling in low because as I was testing, she was getting lower.
Scott Benner Now now it's important to keep in mind that Arden was diagnosed when she was two. So this this is happening in August 2007. Arden's, you know, three years old, maybe. It's not really easy to get a a person with low blood sugar to be cooperative, but it's it's even less easy to to get a three year old person with low blood sugar to be cooperative. As I was sort of scampering around in our in our kitchen, I saw the video camera, and I just flipped it.
Scott Benner I stuffed it on a table, and I pushed the button. And then I went on handling Arden's low blood sugar. My son was there. If this was 2008, he's, like, eight years old. Arden's three.
Scott Benner And I don't even think about the video camera again till we're done. And it was a particularly difficult few minutes. She was crying and snot coming out of her nose, and she was having trouble being reasonable. And I didn't know what the hell I was doing. And when we were finished, I remember feeling sick about videotaping it.
Scott Benner I felt really, really sick about it. And I didn't look at it for a while. But finally, when I did look at it, and it was so shocking to me still. And I thought, well, this is something other people should see. Right?
Scott Benner I've been spending this time on this blog talking about the JDRF and low blood sugars and all these things that no matter how hard you try to explain to people, I just don't think the reality of it really comes through unless you're there. And I thought, okay. Well, maybe this will help. Blogging was different for me back then. I wanted people to understand type one diabetes, but I wanted them to understand it so that they'd become advocates, that they would donate to organizations that were looking for cures and advancements because I am not a doctor, and I desperately wanted to help move my daughter towards a better life.
Scott Benner And so I was trying to use the blog for I can't honestly tell that if I was blogging for the reasons I am today, which is sharing so that, hopefully, you can feel less alone or have a sense of preparedness in a situation when it comes up that you've never experienced before. You know, when something terrible happens and you think, oh god. I did read about this happen to somebody else and they made it through okay. And I even do remember a couple of the steps that they took. I mean, that's me today talking about and writing about type one diabetes.
Scott Benner It's a it's a sharing community building endeavor. Back then, I just wanted you to be interested in helping my daughter to not have type one anymore. So my point is I don't think I would share that video today because it's two purse and and that's coming from a guy who shares a lot of stuff online. A lot of transparency, a lot of a lot of honesty here on on Arden's Day. And and you know what?
Scott Benner Coming here on the Juice Box podcast, there's gonna be even more of it. But I still I can't tell you I would definitely share the But back then, I thought if this makes you understand and reach into your wallet and pull out $50 or a $100 or $10 so the video goes online, and it probably does exactly what I was hoping it would do because I think we must have raised my god. I think we must have raised $12,000 that year. That was our second year walking for the JDRF. You know, the first year, Arden had only been diagnosed for a couple of months.
Scott Benner I think we raised a thousand dollars. But that next year with the blog behind me and my motivation at a at an all time high raised a lot of money. And I'm sure that video and the video of Arden getting up in the morning and seeing a needle go into a little kid's leg, I'm sure that that had a lot to do with it. And I'm, in retrospect, proud of it and happy that we did it. I I don't I don't look back on it and think we shouldn't have done that.
Scott Benner So the blog begins. It's real advocacy heavy at first. But at some point, I feel like my asking is getting repetitive and boring. And I'm starting to see through interactions with a a community that the videos and the sharing and I'm start is really helping people. So I start writing more about the diabetes and less about the, hey.
Scott Benner Help us raise money. And then I see those blog posts starting to connect with people. And my little blog that's reaching not many people starts reaching a few more people and a few more, and I start really seeing the the benefit of the transparency and the honest sharing. I think the first really personal thing that I shared in writing, and you might go back and read and disagree. You might see something sooner.
Scott Benner Is that in that coming year, after after the videos, we find out that Arden is as she approaches her fourth birthday, she she's you know, we told her, you know, I don't know what you tell little kids. You know, make a wish on your birthday. And, you know, I guess she knew that. And her aunt came to us and said, you know, I just thought you should know that Arden's telling people that she's wished for her diabetes to go away and that she's not gonna have type one anymore when her fourth birthday comes. Now that was something that sitting here now and looking back at when I wrote about it years ago, it's just as heartbreaking today as it was then.
Scott Benner And it's still still to this day remains one of the more terrible things that that's ever happened to me. Oddly, not the knowledge that my daughter was running around telling people that she had wished for her diabetes to go away and it was going to. That that wasn't the terrible. The truly horrible part of it was having to be a parent and sitting down with your four year old, not even four, and explaining to her that she could not wish away her disease, that when her fourth birthday came, she was gonna wake up and still have diabetes. And I'll tell you that that was the very first time I recognized that children, despite their age, are experiencing things exactly the way you and I are.
Scott Benner Maybe they can't talk about them the same way. You might not see the stress or the worry on them, but when we told Arden that her diabetes was not gonna go away for her birthday, she cried like an adult who had lost someone they loved. It felt like you were at a funeral. And we have spent a lot of time since then making sure that Arden's hope doesn't die. And I think that also has been happening on the block too.
Scott Benner So it's terrible and as really depressing as the last two minutes I've been speaking is, it's not. And I'm gonna tell you why. Okay. You may have heard a click there, of a mouse when I paused the recording, and it is because I walked away for a second to, make sure that I I I came back after that after that description of the first year and a half of the blog as, you know, something that didn't sound very upbeat. But I really want you to hang on because this this is gonna pay off for you just like it paid off for me in just a second.
Scott Benner So to reiterate, blog starts. I'm just trying really hard to make advocates because I can't cure type one diabetes and I'm hoping to drive money towards the people who are trying. I use honest stories and video of shit that people really would never imagine was happening in someone else's life as a way to bring you right into ground zero and see it. It does create advocates and it does create donations, but it's also bleak and I start understanding that people are reading the blog who also have type one diabetes. People like you, parents of children who have type one.
Scott Benner And while I am showing them a mirror of their life, I'm not reflecting back anything positive at the moment. This is it's, you know, it's just like bad, you know, I I it's not bad fundraising, but it's fundraising. And and it's it's not everything I want it to be anymore. And so now I have to start sharing my process. Something happens.
Scott Benner There's a moment or an experience or something that you would expect is terrible. I gotta come back and tell the story from the other end. What did I learn? What came out of this? You know, what's the what's the upside?
Scott Benner What what what happened? And here's what I've learned. Whether it's dealing my wife and I sitting in our house dealing with Arden's birthday wish or another moment that seems just unfair. These experiences lend you a perspective that you'd have to live a lifetime or two to get in a normal circumstance. So type one diabetes sucks, I would trade it right now for anything.
Scott Benner Never think otherwise. But as long as it's here, I'm gonna learn the lessons that it's teaching because I need those lessons to deal with the next moment. I am building myself into a parent every day and into a better adult than I was yesterday, and that can only benefit my children type one diabetes related or not. So I'm gonna take what I can get out of this thing, this diabetes disaster, and I'm gonna try to grow. Because I'm gonna tell you that when something happens that the person you were before you diabetes was in your life can't imagine if something exists in the world or, you know, when you stop and think about, you know, when you were having children and you thought of all the things that were gonna happen, you never thought this was gonna happen.
Scott Benner You never thought you'd be at the mall hiding down a corridor by a bathroom changing an insulin pump or, you know, forcing your kid to drink a juice box at 03:00 in the morning when they're not even awake. When you never imagined any of that, but now it's here. When those moments happen, when you find yourself in your kitchen getting ready to record a video for this blog that you're making, you don't even want to be doing, you're just doing it because you're trying to defeat type one diabetes with a blog and your daughter just starts talking about a seizure she had when she was two. When that happens and you have to stand there and be an adult and say the right thing when they're done talking, you grow. And as much as it hurts, it teaches you.
Scott Benner And when you wake up the next day, then that's where the hope comes from. When something really crappy happens today and your eyes still open tomorrow and you're not dead and it didn't knock you down, and that's where the hope grows. And it reframes your ability to handle the next moment that's coming, and that's the value in it. So getting through today's issue is not only making you stronger for the next time it happens, it's going to eventually turn you into a person who doesn't see that as an issue anymore And you will be zen like. You will be matrix like at some point with type one diabetes.
Scott Benner Now maybe you're listening to this right now and your child's been diagnosed for a long time or you've had type one diabetes for a long time and you're thinking, yeah man, tell people. Tell people that type one diabetes doesn't get easier, but you get so much better at it that it almost feels easy at times. Tell them that's coming even though they can't believe it at the moment. Find these newly diagnosed people, these parents who are a month into diabetes or six weeks or a year who are still struggling and thinking that it's never gonna get better, let them know it's coming. And that is what I'm hoping to do.
Scott Benner And that's what I started to try to do with the blog back then too. I started seeing my life as it was unfolding and these lessons building on each other, And I thought I never would have believed this back in the beginning. I should tell somebody else. This isn't information I should keep to myself. So if me sharing creates a sense of sameness or a sense of calm or a sense of preparedness for you, Some people say reading ahead in the blog when their child was just diagnosed makes them feel like, oh, that sucks, but I at least I know it's coming or that it may come.
Scott Benner Maybe when it happens, I won't be completely knocked over by it. If the blog's doing that for you, am very glad of that. It's as heartwarming as you can imagine. I just want you to know that some really bad stuff has happened to me, to my wife, to my son, and mostly to my daughter Arden. And we're still here.
Scott Benner We're stronger than we were then. We're smarter than we were then. We're more resilient, more determined, and more transparent because stuff that you couldn't imagine before you had children and before diabetes came to you is going to keep happening to us. We are gonna continue to respond to it with our ever growing and ever building knowledge database of life, and I'm gonna keep sharing it back with you, and I hope you keep adding to yours. Here's the takeaway.
Scott Benner Having type one diabetes is not fun. It's not anything good, but it's not everything bad. And there are a lot of things that are gonna happen to you in the course of a day, a week, a month, a year with type one diabetes that sure hindsight would tell you is not positive. And and maybe you don't need that much perspective in your life, and you're not looking for that much knowledge, but it's here. You're not getting away from it.
Scott Benner You're not gonna you're not gonna cure diabetes today. It's not gonna go away tomorrow, but it is gonna keep teaching us lessons. And it really is up to us how we respond to those things. Are you gonna put your head down and say, I can't do this? Or are you gonna pick your head up and say, I can't look.
Scott Benner I did it yesterday. I can do it today. It's not killing me. And and and let me see the positives in this. You know, instead of just always thinking about the negatives, the no I mean, my god.
Scott Benner I'm as tired as you are. I am tired. And there are days when I look up and I think, no. Not today. Please don't need an insulin pump change today or why why is this blood sugar high?
Scott Benner I I did everything right. I I know that happened, but you've gotta roll with it quickly. Quickly in and quickly out of the situation. You recognize it. Yeah.
Scott Benner Maybe let out a big sigh. You handle it, and you move on. Bang. Bang. Bang.
Scott Benner There is no sitting around lamenting or feeling sorry for yourself. You wanna cry, go in the bathroom, cry, dry your eyes off, come out, and keep going because you can, because I'm doing it, and my god, there's nothing special about me. There's absolutely nothing special about me. I hate diabetes. I love my daughter.
Scott Benner I wanna see her live as long and as healthy as possible. I want each day to be as unencumbered as it possibly can be. So whatever bad stuff happened yesterday, I just look at it as a lesson for tomorrow. And I just keep building on what I know about type one, what I know about resilience, what I know about parenting, and what I know about love. And that information, those experiences, those feelings, they make the next time.
Scott Benner I don't wanna say easier because it really is never easier. I just keep getting better at it, and that makes it feel easier. It's gonna work for you too. I promise. I promise if you keep a good attitude.
Scott Benner I promise if you keep paying attention to what's going on, eventually, you will build up your ability to slow everything down. You know? It's getting to be an old reference now. The Matrix has been out for quite some time, but the very first time something went wrong, you know, that one video that I hope you go back and look at is of Arden describing her having a seizure when she was I don't know. She must have been about two and a half.
Scott Benner I feel like it was about six months after her diagnosis. And a year later, completely out of the blue, she starts talking about this seizure and describing it. And I still have this video camera out because I'm making a blog. And I do it again. I flip the video camera on.
Scott Benner It's pointing at her. She has no idea it's there. And she describes some pretty heady stuff. Three and a half year old girl talking about her eyes changing colors, which if you really listen to her, what she's saying is she was blind. She talks about turning into a monster, but if you pay attention to what she's really saying, she was grunting because she couldn't talk during the seizure.
Scott Benner That's about as low as it gets, man. My two and a half year old daughter had a seizure because I gave her too much insulin for some food.
Speaker 2 It's it's just like a old man in the old man. It's a old man that looks like a old man.
Scott Benner You talking about when your blood sugar gets low?
Speaker 2 Yeah. But when I, like, talk, it's not real good and stuff.
Scott Benner You weren't able to talk? Did your voice make a different sound? Uh-huh. Do you remember that?
Speaker 2 It it it it makes, like, animals sound like a fever and stuff. How did your eyes work when you were having your seizure? It was really supported by it, see what I was doing. It was it was weird, like, that was scary, and it was a monster.
Scott Benner But we're still here. She's still here. She's fine. That's pretty much the worst thing you could've I mean, I know right now as parent of a child with type one diabetes, your biggest fear is that your kid might have a seizure. Mine did.
Scott Benner She's still fine. She's still the kid you see on the blog, hitting a softball, playing basketball. She is as active and as everyday kid as anybody else. And the worst thing you can imagine has already happened to her. And I gotta be honest with you, it's happened twice.
Scott Benner Happened about a year later too. Still here. Has it happened since then? No. That was you know, she was two and a half when that happened.
Scott Benner She's gonna be 11 this summer. So I learned. I figured it out. I figured out what I did wrong. I don't do that anymore.
Scott Benner If I make a mistake now, I know how to take care of it better. But that's not the takeaway for you. The takeaway for you is the worst thing you can imagine happened to my daughter, she's still fine. We can keep that from happening to your kids with some resilience and and some hard work. You know, you can you can take my mistakes and turn them into your knowledge.
Scott Benner But please leave this recording. Leave it with the knowledge that nothing is as bad as you think it's gonna be. And at least when it feels horrible, it's teaching you something. Type one diabetes teaches a lot about life. It teaches a lot about who you are and who you want to be and how you want to be that person and what you want to accomplish today and what you are hoping to accomplish tomorrow, and what is your goal.
Scott Benner Not a lot of people know what their life goal is, but you do don't you? I know what mine is. We have a perspective on life as the parents of children with type one diabetes, the people who live with type one diabetes. We have a perspective on life that you should have to live two lifetimes to gain. And maybe that's unfair, and I actually think it is.
Scott Benner I think you should have to think you should have to live a whole full life to know some of the things I know. But man, if it helps me take better care of my family, then I'm glad I have it. And I want you to be glad you have this knowledge too. So that's pretty much it, people. This was number three.
Scott Benner Juicebox podcast episode three felt like a bummer, but maybe it's not. I hope it wasn't. I hope you come back next week. So come on back.
Speaker 2 Music for the juice box podcast composed and performed by Sydney Miller. If you enjoyed this podcast, please review it on iTunes.
Blog posts mentioned in this episode:
First post on Arden's Day
