#003 The Time I Decided to Share
Scott Benner
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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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:10
This is the Juicebox Podcast episode three. I'm Scott Benner. Today we are going to delve into the very beginning of my type one diabetes parenting blog called Arden's day. I. Let's see where to start. Okay. 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 didn't do it the way you're thinking of it now. And 2015 and 2015, you hear somebody say, I started a blog, and you go, of course she did. Everybody has a blog. I've been told that there are approximately 4000, 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. And I web allows 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 they 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 my circle, you know, the people that that we knew, and explain type one diabetes, that's all I was looking to do it if you have type one, or if you're the parent of a child with type one, you know exactly what I mean. There's this whole life, this whole kind of micro cosmos have of diabetes that other people just don't understand it, you know, and I find myself saying it all the time, come live at my house for a week and you'll leave running scared, you know, like those, like the normies did from The Munsters house, you can, you know, you will, you will run away and have a completely different perspective on on what's going on. So I thought, Okay, 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 going to get this out? I thought about, he used to do this thing for fun, I would get up in the morning. And while I was kind of 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 and think of something witty to say. And you send your witticisms out into the world on your Facebook status. But a long time ago, I was doing that through email. And I remembered that as being pretty, you know, a pretty viable way of reaching people. Because if somebody thought it was funny, they'd send it to somebody else. And you know, before you knew it, that you were getting emails like, hey, put me on your email list about when you make fun of the news. And I thought, Okay, well, 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 write my little stories, you know, little bits at a time digestible bits of time. And then I'll send out an email and let them know it's there. Because how old you know in 2007, would you let someone know there was something on the internet for them to read? 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, etc. 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 is before CGM and all that stuff is she she was good. She was in a good spot. And we left and got food. And I do remember thinking she knew 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 an errand I had to run. 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 realized 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 looking back now I can see she wasn't just low. She was falling in love. Because as I was testing, she was getting lower. Now Now it's important to keep in mind that ARD was diagnosed when she was too so this this is happening in August of 2007. hardens. You know, three years old, maybe it's not really easy to get a person with Lobo on sugar to be cooperative, but it's it's even less easy 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, I stuffed it on a table, and I pushed the button. And then I went on handling Ardens, low blood sugar, my son was there, if this was 2008, he's like eight years old, are just three. And I don't even think about the video camera again, tore down 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 I was doing. And when we were finished, I remember feeling sick about videotaping it 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? I've been spending this time on this blog, talking about the JDRF and low blood sugars and all these things, 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 so that it 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. And so I was trying to use the blog for that. 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 me that's me today, talking about and writing about type one diabetes, 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 too personal. 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 you know what come in here on the Juicebox Podcast, there's going to be even more of it. But I still, I can't tell you, I would definitely share the video. But back then I thought if this makes you understand and reach into your wallet and pull out 50 bucks or 100 bucks 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 like God, I think we must have raised $12,000 That year, that was our second year walking for the JDRF the first year or had only been diagnosed for a couple of months, I think we raised $1,000. But that next year with the blog behind me and my motivation at an all time high, raised a lot of money. And I'm sure that video and the video of art and 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 don't I don't look back on it and think we shouldn't have done that. 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 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, 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 started to reaching a few more people and a few more. And I start really seeing 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. 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 going to 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. 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 going to wake up and still have diabetes. And I'll tell you that that was the very first time I recognize that children, despite their age, are experiencing things exactly the way you and I are, 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 RT and that her diabetes was not going to 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've 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 blog too. So as terrible and as really depressing as the last two minutes I've been speaking is it's not. And I'm going to tell you why. Okay, you may have heard a click there of a mouse, when I pause the recording, I mean, it is because I walked away for a second to make sure that 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 going to pay off for you. Just like it paid off for me and just a second. 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. 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, 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, there's a moment or an experience or something that you would expect this terrible. I gotta come back and tell the story from the other end. What did they learn what came out of this? You know, what's the, what's the upside? 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. And I would treat it right now for anything and never think otherwise. But as long as it's here, I'm going to 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 going to take what I can get out of this thing, this diabetes disaster. And I'm going to try to grow because I'm going to tell you that when something happens, that the person you were before you diabetes was in your life, can't imagine it's something that 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 going to happen you never thought this was going to happen. You never thought you'd be at the mall. All, hiding down a corridor by a bathroom changing an insulin pump or, you know, forcing your kid to drink a juice box at three o'clock 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. 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. Now maybe you're listening to this right now and your child has 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 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 what's coming. And that is what I'm hoping to do. 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'd never would have believed this back in the beginning, I should tell somebody else. This isn't information I should keep to myself, though 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 at least I know it's coming or that it may come maybe when it happens, I won't be completely knocked over by it. If the blog is doing that for you. I'm very glad of that. So 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, 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 going to continue to respond to it with our ever growing and ever building knowledge database of life. And I'm going to keep sharing it back with you. And I hope you keep adding to yours. Here's the takeaway. 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 going to happen to you in the course of a day, a week, a month a year with type one diabetes, that shore. Hindsight would tell you is not positive. 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. You're not going to you're not going to cure diabetes today. It's not going to 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? Where are you going to pick your head up and say, I look I did it yesterday. I can do it today. It's not killing me. And let me see the positives in this. You know, instead of just always thinking about the negatives, Lenovo. I mean, my God, 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? I did it everything right? I know that happens. But you've got to roll with it quickly, quickly in and quickly out of the situation, you recognize it. Maybe let out a big sigh, you handle it and you move on, bang, bang, bang, there is no sitting around lamenting or feeling sorry for yourself. You want to 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. I want to 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. I don't want to say easier, because it really is never easier. I just keep getting better at it. And that makes it feel easier. It's going to work for you too. I promise. I promise if you keep a good attitude, 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 that matrix 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 art and describing her having a seizure when she was
I don't know she must have been about two and a half. 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 flipped the video camera on it's pointing at her she has no idea it's there. And she describes some pretty heavy 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. 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
are you talking about when your blood sugar gets low?
Unknown Speaker 22:43
Like, really good.
Scott Benner 22:46
You weren't able to talk? Right? And then what happened? Did your voice make a different sound? Do you remember that? Like how did your eyes work when you were having your seizure?
Unknown Speaker 23:04
He was really simply by you I was doing. There's no escaping me.
Scott Benner 23:12
But we're still here. She's still here. She's fine. That's pretty much the worst thing you could have. I mean, I know right now, as a parent of a child with type one diabetes, your biggest fear is that your kid might have a seizure. Mine did. She still fine. She is still the kid you see on the blog, hitting a softball, playing basketball. She is as active and as everyday kid is 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 happened about a year later to still here. Has it happened since then? No, no. That was, you know, she was two and a half when that happened. She's going to be 11 this summer. So I learned, I figured it out. I figured out what I did wrong. I don't do that anymore. 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. And 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. But please leave this recording. Leave it with the knowledge that nothing is as bad as you think it's going to be. And at least when it feels horrible. It's teaching you something. type one diabetes teaches a lot about life. teaches a lot about who you are and who you want to be and how you want to be that person and what you wanted to accomplish today and what you're hoping to accomplish tomorrow? And what's your goal? By 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, you should have to live two lifetimes to gain. And maybe that's unfair. And I actually think it is, 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 had it. And I want you to be glad you have this knowledge too. So that's pretty much it people. This was number three 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. To Come on.
Unknown Speaker 25:56
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Blog posts mentioned in this episode:
First post on Arden's Day
