#1655 Bain’s Mom Marlee (TikTok) - Part 1
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Crystal, 33, T1D since 12, recounts DKA, insulin restriction for weight, congenital health challenges, and her turnaround—prebolusing, diet tweaks, and pursuing an insulin pump—with community support and hope.
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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 0:00
Here we are back together again, friends for another episode of The Juicebox podcast.
Marley 0:14
Hey, my name is Marley. I have a type one diabetic, one year old son named Bane, and you may have seen us on Tiktok or Instagram and now even Facebook, we just post our life as a family handling type one diabetes and our toddler son, and just go with the flow and do whatever.
Scott Benner 0:36
If your loved one is newly diagnosed with type one diabetes and you're seeking a clear, practical perspective, check out the bold beginning series on the Juicebox podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over 35 years of personal insight into type one. Our series cuts through the medical jargon and delivers straightforward answers to your most pressing questions. You'll gain insight from real patients and caregivers and find practical advice to help you confidently navigate life with type one you can start your journey informed and empowered with the Juicebox podcast, the bold beginning series, and all of the collections in the Juicebox podcast are available in your audio app and at Juicebox podcast.com in the menu, nothing you hear on The Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan. Summertime is right around the corner, and Omnipod five is the only tube free automated insulin delivery system in the United States, because it's tube free, it's also waterproof, and it goes wherever you go. Learn more at my link, omnipod.com/juicebox That's right. Omnipod is sponsoring this episode of the podcast, and at my link, you can get a free starter kit. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox this episode of The Juicebox podcast is sponsored by us. Med, us. Med.com/juicebox, or call 888-721-1514, get your supplies the same way we do from us. Med, the show you're about to listen to is sponsored by the ever since 365 the ever since. 365 has exceptional accuracy over one year and is the most accurate CGM in the low range that you can get ever since cgm.com/juicebox
Marley 2:33
Hey, my name is Marley. I have a type one diabetic one year old son named Bane, and you may have seen us on Tiktok or Instagram and now even Facebook, but we just post our life as a family handling type one diabetes and our toddler son, and just go with the flow and do whatever. All right,
Scott Benner 2:57
let's talk about that. How old was Bane? Also with Bane. Like, is that a Batman reference?
Marley 3:03
Actually, not. My husband does love Batman, and he actually told me that was a character in Batman, like, probably three months after we decided we were going to name him that, and it's not spelled the same as Batman's. I don't believe gotcha, but it's just a name that I heard and I liked it, and I thought it would be a strong name because of our last name, and it's just, I don't know we love it,
Scott Benner 3:27
yeah? No, I do too. Actually, it's different. Yeah, it is. It's very cool. So Benner is your first
Marley 3:34
he is my first child, which is kind of traumatic that this happened as a first time mom. He was diagnosed at 12 months old. He had his first birthday, and then five days later, we were in DKA in the hospital to being told that he has diabetes, and it was a whole thing.
Scott Benner 3:51
Well, five days after his first birthday, yeah, it was horrible. I imagine my daughter was a week or two after her second birthday, and that was also crazy. So prior to that first birthday, did anything stick out to you as being sketchy, weird, anything medical,
Marley 4:08
really, no, like in hindsight, now that I know the symptoms and the characteristics of type one diabetes, yes, but at that point, no, he's always been a very healthy child. He never really got sick. He's only gotten sick twice in his life. He had an anaphylactic reaction to eggs when he was nine months, going on 10 months old. And then, other than that, no, we had never nothing stuck. Noticed anything now, what made us take him to the ER, he was started having, like that, lethargic, heavy breathing. Then he then it started the vomiting, and it just kind of really started to snowball within a few hours, and it got really bad. Where we were, my husband was like, we have to take him to the hospital. And we went, and I. Thinking they would tell us like he has the flu, or he has RSV, or, you know, normal things that normal babies have. He was in DKA though, yeah, he was in DKA and in a diabetic coma, and they were like, your son has type one diabetes. And you just never expect anybody to be told that, especially your infant son, and it was just, it hit home. It was horrible, like it truly was, No,
Scott Benner 5:25
it's not one of the things you plan for when you're thinking about having a family, that's for sure. No. So he had the Coos, small respirations. He was breathing really heavily. And then was that just for, like, the day, and then the vomiting, and then the hospital was, did it all come like in a very close time period?
Marley 5:43
It did like leading up, like I would say that week, three days before he got diagnosed. He was being grumpier than usual, kind of really tired. He always drank a lot. He was a big breast feeder. He was big on water. He always was drinking. He's been like that. Since he was a newborn, he was just one of those type of babies, and then he also was always peeing out of his diapers. And people just were like, That's what boys do. They just do that. So being a first time mom, you just don't think,
Scott Benner 6:16
tell me, Marley, how long was the peeing out of the diapers going on for?
Marley 6:20
Probably I would say at least a month or two.
Scott Benner 6:23
Okay, truly, I'm gonna guess that's your time frame of like on set to Yeah, to diabetes, truly,
Marley 6:29
now that I know things, now that I understand what the characteristics and the symptoms of type one are, yeah, he was doing all of them. He was excessive thirst. He was excessive ping. Then the vomiting came, the weight loss was there, all that stuff. But I feel like a lot of those symptoms go hand in hand with babies. And they want babies to have wet diapers. They want babies to start losing that chunky baby weight and transitioning to toddlers when they're moving. They want you to be eating all the time like they want that so you don't look at that as like, my baby's weird. He's doing something he's not supposed to do because you want them to be growing. You wanting them to be doing that type of stuff. So now that I know, yeah, he had all of them like he truly did, but until it became horrible, like that day, I would say eight hours, he went from like a grumpy, cutting teeth toddler, to like, he can't keep his eyes open,
Scott Benner 7:26
right? And was he actually in a coma by the time you got to the hospital?
Marley 7:30
Yeah, he was. So what happened is, we took him to the urgent clinic, because it was like five o'clock. His pediatrician's office was closed. We took him to the urgent clinic. They were like, he has a double ear infection. We're gonna give him a rosefin shot. So they gave him a shot. They made us sit there. It was his first ear infection he had ever had. They gave him the infection or the rosefin shot, and they were like, sit here, and we're gonna monitor him to make sure, you know, nothing happens from the shot. So we sit there. He starts vomiting on me, which was weird, because I had never seen him throw up before, other than the egg allergy prior. And so everything got good. He kind of got a little bit more perky, so he wasn't as lethargic at that point. And then we drove home from the point where we got into the car and got home, he probably threw up six times, and when we got home, he was, like, grabbing water. He was trying to grab anything. And he's 12 months old. He can't even walk at this point. Yeah, he's just grabbing it, guzzling it down, then projectile vomiting. That's when my husband was like, we're taking him to the ER, like, we're going right now. And we finally went in and, yeah,
Scott Benner 8:37
I interviewed an adult once that the story in their family was that she was diagnosed as a toddler, and when they finally figured out something was going on, they caught her drinking out of the toilet.
Marley 8:49
And I think Bane truly would have done that, because, sure, I've never seen it was like a crack addict trying to get their drug like, that's literally what it looked like. No, I imagine it was rabid. He needed
Scott Benner 9:01
it. Tell me something when he's in when they tell you he's comatose. Like, what do they explain to you about the process and the outcomes they're hoping for and what might go wrong? Like, how do they explain all that to you?
Marley 9:14
So we live in a pretty small town in Mississippi. We do have a hospital. We have an emergency room. So we took him to that small hospital, and we probably were there. It felt like forever, but we were probably there 45 minutes, and the doctor, literally, they swabbed him, they chest x rayed him, whatever they the doctor walked in, and he literally, honestly, it was kind of hurtful to me. He walked in, he was like, your son's got diabetes. Like, that's exactly how he said it, and your mouth just drops. You look at him, like, Are you freaking kidding me? Like, are you serious? He has diabetes? What went through my head was, like, how does my son get diabetes? I knew what type one was. I had a friend growing up in high school that had type one. My husband has relatives with type one. But I feel like my mind automatically went to type two and like, How does my infant son have diabetes? He's only eating organic food. He's breastfed. Like, I've tried to be the perfect mom. How does this happen, right? So when he walked in, he was like, I didn't realize, you know how serious it was.
Scott Benner 10:18
Yeah, your head didn't jump to type one, no. Yeah, right.
Marley 10:21
And he was like, He's in DKA. And told me what DKA was. He was like, we're calling an ambulance. He's getting on an ambulance, and the first bed that opens up in an ICU, you're going. So they called Le Bonner in Memphis, they called our hospital in Jackson. They called all the children's hospitals that were within four hours from us. And the first one that got a bed, we went to it, and the doctor came in. He was like, actually, your son is so bad, basically, that he's getting on a helicopter and we're airlifting him to the
Scott Benner 10:51
bats they life flighted him. How to where? Where do you go to? We went to
Marley 10:55
children's of Mississippi, or also known as batson's Children's Hospital in Jackson, Mississippi, and praise God, they let me get on the air or the helicopter with him, because I don't think I would have made it, driving three hours from where we are to him. But yeah, it was a whole thing.
Scott Benner 11:11
No kidding. Hey, do you have any autoimmune issues, hypothyroidism, celiac, you got any eczema, vitiligo,
Marley 11:19
nothing. Don't I do think my hut, we have went to every type of specialist known to man. For my husband, he gets chronic mouth ulcers, like 12 at a time. He's had everything under the moon done. He's seen every kind of doctor possible. He's been tested for autoimmune it never rings up that he has any audio autoimmune disorders, but I truly do think he probably does, and they just can't figure out what it is the
Scott Benner 11:45
type one's in his family line, though, so this is what type one yeah, that I'm gonna tell you. I don't, it doesn't matter if they're destined or not, like it's autoimmune runs in his side of the family as type one diabetes. I don't think it's crazy that your that your son has it.
Marley 12:01
So, yeah, I definitely think it was a genetic thing. It's all of the cousins he has on his grandmother's side. I think it's his second, third, and now some of his fourth cousins are all getting type one diabetes. Wow, how about that, which is insane, but
Scott Benner 12:15
it's the bane of their existence. Yeah, literally, yeah. By the way, there's so many titles just with your name, Scott. We could easily call this pain in my existence. We could easily call this Marley and Me, because you and I are talking. Oh yeah, there's, there's 1000 ways to go here, but we'll figure it out as we as we head through. Okay, so you're, can I ask how old you are when this happens?
Marley 12:36
I was 27 Okay, first child,
Scott Benner 12:40
young yourself. How long have you been married? We've been married for five years. Wow. Okay, so yeah, I mean, you're still your young person starting a family. It's not what you're expecting. Obviously. No, no for sure once. Well, I guess my question should be, how long did that Tacoma State last
Marley 12:59
so once we got airlifted to Batson, they do triage different, like, they bring you to the, er, that's where it's so it's also a learning hospital, because it's our state's Children's Hospital, so it's all residents and doctors and nurses. Like, it's, yeah, hundreds of people. So when we got there, hundreds of people start coming in. They're talking to me like, Oh, my God, we never see 12 month olds in DKA. We never see babies with diabetes. Like, so I'm feeling like, awesome, a unicorn that has a horrible thing on it. Like, I just felt I was like, What did I do? Like, what did I do to deserve this?
Scott Benner 13:38
Help me? Marley, did it feel, you know, you mentioned Jesus already, so, like, Did it feel like something got given to you or done to you? Or did you feel like you did something wrong? Like, I'm trying to figure out what the feelings were that you were fighting with, right then,
Marley 13:51
I think the feelings I was fighting for, besides, like, Is my child gonna stay alive? Is how does this happen when I'm such a type, a perfectionist type person, and I tried to do everything perfect, and then that something like this tries to take his life. It was just, it was horrible, yeah, like it really was, did
Scott Benner 14:15
it give you that, that kind of lost feeling, like it doesn't seem to matter what I do, like this. How did this horrible thing happen? There's nothing you can do about it. Yeah, I know how you feel. I hope you're having luck giving that away. You're not carrying that around with you. Are you?
Marley 14:30
Oh, no, we're good now. Good, good, good. How long ago was this? So he was diagnosed on August the 16th, so he's coming up on his one year of we've been dealing with
Scott Benner 14:39
this. Yeah, very recently, no kidding, shit show for sure. You know, obviously pulls through, and he's doing well and like, how long is he in the hospital for? And when they send you home, try to go back to that time and tell me about the understanding you have of your new responsibilities when you think of a CGM and all the good that it brings. In your life, it's the first thing you think about. I love that I have to change it all the time. I love the warm up period every time I have to change it. I love that when I bump into a door frame, sometimes it gets ripped off. I love that the adhesive kind of gets mushy sometimes when I sweat and falls off. No, these are not the things that you love about a CGM. Today's episode of The Juicebox podcast is sponsored by the ever since 365 the only CGM that you only have to put on once a year, and the only CGM that won't give you any of those problems. The ever since 365 is the only one year CGM designed to minimize the vice frustration. It has exceptional accuracy for one year with almost no false alarms from compression lows while you're sleeping, you can manage your diabetes instead of your CGM with the ever since 365 learn more and get started today at ever since cgm.com/juicebox one year, one CGM. Today's episode is brought to you by Omnipod. It might sound crazy to say, but Summertime is right around the corner. That means more swimming, sports activities, vacations, and you know what's a great feeling, being able to stay connected to automated insulin delivery while doing it all. Omnipod five is the only tube free automated insulin delivery system in the US, and because it's tube free and waterproof, it goes everywhere you do in the pool, in the ocean or on the soccer field. Unlike traditional insulin pumps, you never have to disconnect from Omnipod five for daily activities, which means you never have to take a break from automated insulin delivery. Ready to go. Tube free. Request your free Omnipod five Starter Kit today at omnipod.com/juicebox Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox type that link into your browser or go to Juicebox podcast.com and click on the image of Omnipod right at the bottom, there is also a link right in the show notes of your podcast player.
Marley 17:03
So he was in the pediatric ICU for about three ish days. I would say they checked his blood every hour, took two vials of blood every four hours, and basically, I would say he was like in the coma type state for at least two days, didn't wake up, wasn't eating, woke up the third day, and you know, they don't allow you to eat until they're ready for your sugar, like your sugars have to be down for them to see how. I guess it's working. I don't know. I was so confused at that point, but he finally was allowed to eat on the third day, and then that's when his sugars were finally better, his bicarb, or whatever those words are, they use the blood gasses they were checking his gap was closed, and all that stuff. And they moved us to like, they call it their education floor, which it was like going from the nicest hotel to the crappiest hotel on the block. It was horrible. And that's where they taught us, around the clock, how to give insulin, how to dose for carbs. And like, I felt so lost, and I asked that nurse probably a million times, like, Okay, show me this math again. Like, what am I supposed to do? How am I supposed to draw this insulin? He's getting one unit of Lantis, like, I can't even find one unit on this insulin pen. Like they're having to give us half unit syringes. And the nurses were so they're like, we don't see this in infants. Let me go try to find a half unit syringe, because we don't ever use those.
Scott Benner 18:35
And, yeah, now you're talking about, you're telling me a lot of things that happened to us too. Like, I'm hearing a lot of similarities,
Marley 18:41
even the doctor, like his endocrinologist, she's wonderful. We still use her. She was with us when he was there, when he got diagnosed. We still use her. She's wonderful. She's like the head of the teaching medical university at that hospital. And she honestly was my lifesaver. Like every time she would come in, she would let me know, like, he's gonna be okay. He's gonna if he wants to be a pro football player, he'll still be a pro football player. If he wants to climb mountains, like he'll still do that, like it's okay. You can do whatever you want with him. He's gonna be fine. He's just in a
Scott Benner 19:18
horrible state right now. Yeah, Was that helpful to you, to make you feel better, for sure, especially
Marley 19:23
hearing it from somebody that you hear is like a diabetic guru. And she, this is her job. She understands this. So you feel like her telling you that is like, kind of like reassuring, in a way, sure,
Scott Benner 19:37
hey, I mean, and this is only I would imagine, like, a handful of hours or days removed from you thinking he might not live right? Like, yeah, yeah. I'm not putting words in your mouth, right? You guys weren't sure. You guys weren't sure he was gonna live right, yeah. Can I ask a little bit about the interpersonal during the hospital stay between you and your husband? Because you're young, you've been married. Quite a long time, so you've got a little rhythm going, but you haven't been married 20 years. Did you ever have time to assess him or him you about how you guys were dealing with this, or did you feel like because I'm trying to say that, like when, when this was happening between me, my wife, my daughter, and my my son, who was older and not in the hospital with us at the time, I don't know how to explain that I felt like I was insulated inside of a bubble, and I wasn't really connecting with my wife or my daughter like a lot. Felt like it was happening to me, while it felt like a lot was happening to my daughter, and I could look over at my wife and see that she was in trouble, and I didn't have the ability to worry about my wife and, like, and I don't feel like she had the ability to worry about me. So it felt like we all insulated ourselves into our own bubbles. Like Arden was just in a dead stare, basically, you know, just, and I was just digging in on what was happening. What was my responsibility? You start thinking about how it's going to change your life, her life, like you said, like, what are you going to be able to do? And then I looked at my wife, and I felt like she was going through the same thing. Like, the last thing you could do was, like, almost worry about another person in that situation. I was wondering if you had a similar experience. I have always disliked ordering diabetes supplies. I'm guessing you have as well. It hasn't been a problem for us for the last few years, though, because we began using us Med, you can too us med.com/juicebox, or call 888-721-1514, to get your free benefits. Check us med has served over 1 million people living with diabetes since 1996 they carry everything you need, from CGM to insulin pumps and diabetes testing supplies and more. I'm talking about all the good ones, all your favorites, libre three, Dexcom, g7 and pumps like Omnipod five, Omnipod dash tandem, and most recently, the eyelet pump from beta bionics, the stuff you're looking for, they have it at us. Med, 888-721-1514, or go to us. Med.com/juicebox, to get started now use my link to support the podcast. That's us. Med.com/juicebox, or call 888-721-1514,
Marley 22:19
yeah. So we definitely had a similar experience like I was worried about myself. I was worried about our family in a hole. I was worried about Bane, obviously, continuing to live and fight through this and then also being poked and prodded, and it was horrible. I was worried about breastfeeding him and what that what this hospital stay would do so many I'm a very Control Freak type of person. I like to have control. I like to kind of just be on top of my honestly. And I just like to be a leader. That's just how I am. That's the personality I have. And so I was worried about Chandler, and I was worried about his feelings, and obviously he was worried about mine, but I felt like we were both so broken at that point, like we just had to put our head on and learn what they were teaching us.
Scott Benner 23:08
Honestly. Yeah, I think the first time I grew up pretty broke and, like, my dad left pretty early and stuff like that, and I felt like it was the first time as an adult, or the first time since my father and mother got divorced, where I understood that, like, concept of like, you just put your head down and go, Yeah, you know what I mean? Like, there's not a lot of time to, like, sit around and think about how you feel. There's something that's so, like, shocking happening in front of you that needs handling, and you just like you. I don't know if it's conscious, but I think it's a decision you make. Like, is this gonna knock me over, or am I gonna keep going?
Marley 23:43
Yeah, and it's something you will not know how it feels until you experience that. Like, it's the most horrible, gut wrenching feeling. But you don't have time to sit there and sulk and worry, and you just don't have time. Like, do you want your child to be alive? Do you want to learn how to keep them alive, then you just got to keep going.
Scott Benner 24:03
Yeah. Since then, I haven't felt like that. Since then, up until the day I realized my mom was gonna die. Oh, man, I'm sorry. No, no, those are the two times that I felt like whatever that is, yeah, yeah, like that. How would I describe it? It felt like all the fibers inside of me were being torn apart, yeah?
Marley 24:23
Like you're just numb to it. Yeah? It was really crazy.
Scott Benner 24:27
Okay, so you're a self confessed control freak, so that's nice. I'm assuming, I'm assuming you're looking for ways to give that away right now. Yeah? But so your home, you were syringes, like half unit syringes. That's how they sent you home.
Marley 24:42
They didn't send us home on a pump, which I'm now in, that Facebook group called like diapers and diabetes. That's where I learned everything about caring for an infant with diabetes. It's not from the
Scott Benner 24:53
hospital at all. Lot of people speak well about that Facebook group, that
Marley 24:57
Facebook group saved me like truly. But what? Left on Humalog Jr insulin pins with like a correction factor and a carb ratio. That was horrible. And then we left on Atlantis and vows because insurance issues, they wouldn't pay for pins for some reason, because nothing is cleared for infants with diabetes, apparently,
Scott Benner 25:21
yeah, no, no, there's, yeah, nothing's available for them.
Marley 25:24
It was horrible, like, you get home from this horrible hospital stay, and now you're, like, traumatized by even giving your kid food, and then you're fighting insurance on the phone for Dexcom, because they're not FDA cleared for one year olds. But I can't help, my one year old has a diabetes.
Scott Benner 25:42
Yeah, right, that's not my fault, yeah? Like, I didn't ask for this. But is that, when you learned about that, the doctor can write the prescription off label and you can just use that stuff?
Marley 25:51
Yeah? So our doctor, she's like, she'll do a PA in a heartbeat, and she'll fight with those in like, she's gotten everything, everything approved for him. That's awesome. Praise the Lord. Because, yeah, between me and her, they didn't have a chance.
Scott Benner 26:05
What do you guys do for a living? Like, did somebody have to change jobs or do like, I mean, it's a lot of work raising an infant with type one.
Marley 26:12
So, so before all of this, my husband has always worked from home. He is a server engineer. He works on computers. I couldn't tell you what he does, because I don't really understand it, but that's his thing. He loves it, and he's always worked from home. I am a speech language pathologist. I worked in a pediatric private practice seeing kids with all types of disabilities, but also just normal kids with speech issues or whatever. I worked there full time Monday through Thursday, and then the day he got diagnosed. Well before he got diagnosed, my husband was at home, and his mom would keep Bain at our house, okay, his first year of life, and they kept calling me like, something's wrong with Benner, like, you need to come see him. He's sick. We're gonna take him to the doctor. I'm like, maybe he's just tired of y'all like he probably just wants his mom, so I'm just gonna leave work and come so I went home, and that's when all came loose, and we took him to the hospital or whatever, and that day, I never went back to
Scott Benner 27:11
work. No kidding. Has that hurt your family? It did hurt our
Marley 27:15
family for a little bit. I feel like more mentally, because it's hard when you're going from a two income home to now, you don't know what the future holds, because that's what we didn't know what the future holds. Probably two months after he got diagnosed, I did transition from in person speech therapist job to now a teletherapy speech therapy job. So I do work a part time speech therapy. Awesome.
Scott Benner 27:41
That's awesome. Yeah. So tell me about what you've learned about taking care of type one and an infant. Over the last year,
Marley 27:47
I've learned that it is so unpredictable, it is unknown, and no one understands it, unless you have dealt with it, including the doctors. That's what I've learned.
Scott Benner 28:01
I remember. So I don't know how much Bain weighed when, before he was diagnosed, big boy, oh, how much do you
Marley 28:08
remember? I think he weighed like 25 or 26
Scott Benner 28:11
pounds. Oh, that's crazy. So Arden was two, she weighed 19 pounds. And when we came out of the hospital, I think she weighed 17, yeah, my head lost a lot of weight too, yeah. And then in that coming time i I'm telling you, because you don't know this, but, like, I think people who listen might know this already, but I realized, like, you know, like you said, like, a unit, I can't use these unit syringes. And we only had three, this was 2006 so they only had, we had a syringe and vials and we got a meter. Those are the things that we got, right, right? So unit that's not working, and doctor's like, well, here's half a unit needles. Like, all right, great. They didn't work either. Like, they were too much. So I didn't know what to do. I was a stay at home dad at the time, by the way, so I was me, like, 24/7 trying to take care of it, pretty much. And I kept thinking, like, you know, in the beginning you're like, well, the measurements are in half, so that's how it works. But then one day, you're like, This is bullshit. Like, I don't need a half a unit here. And I couldn't figure out how to, like, get a system going, so I took some insulin, and I squirted it into like a dish, and then I put food coloring in it. Oh, my God, all right. And then I sat, and I practiced, with my eyes closed, pulling on the plunger like so slightly that when I pushed it back out, a big drop would come out like so I was trying to teach myself how to pull in a drop of insulin, and you couldn't read it on the syringe, so it was all about feel that's why I would just do it with my eyes closed. I'd pull it and then I'd try to remember how I did it. I'd squirt it back out, and I put the food coloring in so I could see it better. And I was like, okay, and I got them to the point where I was really consistent. Then, of course, I. Threw away the insulin that had the food coloring in it, and, you know, and then the next time I Bolus, I did it like that, with, like a drop of insulin,
Marley 30:08
yeah, that's how it was for Benner. Like it was, it felt like it was a tear
Scott Benner 30:12
drop, yeah, it was just an insane moment where I was, like, even this half a units, way, way too much,
Marley 30:19
yeah? Like it was either, I felt like I was either not giving him enough, or it was too much, and I was having to carve him up to deal with the insulin in his
Scott Benner 30:29
body, yeah, but you have a CGM now, right? Yeah. So we left the hospital
Marley 30:33
with the Dexcom and on insulin pens and whatever, and then he got on a tandem movie in April, yeah. And it's a game changer. I imagine it is.
Scott Benner 30:45
I don't think we got our first CGM. I mean, if she was two and she was diagnosed, like, maybe for four years, I cannot imagine I was out of my mind by then. I was struggling to keep his or keep her a 1c in the like, mid to high eights, yeah, and nobody was telling me what to do. Like, it was all just, it just all felt random. It really just like, maybe the worst part of my life, like, you know, if I was sure, yeah, if I was a control freak, I would have been out of my mind, because I didn't. I was like, I didn't feel like I was controlling
Marley 31:17
anything, yeah, I'm sure, especially like having to poke her constantly. Like, I still poke Benner a lot, and we have a Dexcom,
Scott Benner 31:25
yeah, no, I think Arden probably finger pricks and needles in those first years, like, up until when she got a pump, which was and she got a pump when she was like, we got an Omnipod when she was like, four something. It was a couple years in, but counting finger pokes and, you know, and injections, I must have stuck her 10,000 times, yeah, bless her, yeah. Just really crazy. And to this day, like it's, she's not good with needles, yeah?
Marley 31:53
Kind of how Benner was at first. Like he never really fought me because he was so small, and it was just, you know, we got to do this type of thing. He's always been pretty good with needles, but at first he would kind of like, whimper and, you know, like the normal, like, I'm scared of this type thing. But, yeah, it's horrible. It's a horrible feeling when you're a parent and you're feeling like you're hurting your child,
Scott Benner 32:15
yeah. Okay, so how long did you get the Moby, by the way, let me just say this tandem diabetes.com/juicebox. Dexcom.com/juicebox, use the links. They're in the show notes. You're gonna laugh because you're on tick tock you. Like, I know what he's doing. I'm Team tandem, all the way awesome. So how have things changed? I assume just him putting on weight probably has made things easier. Like, where are you today, with the with the management?
Marley 32:36
So his a 1c when he was diagnosed was like, 9.8 I want to say. And then in March, before starting the 10 of Moby, it had only went down to 8.9 and that was strictly on pins and bowels. And that's, I feel like I'm pretty on top of this stuff, but I feel like that's just because pins and bowels do not work for infants and toddlers, like just period the end, it just doesn't, unless you're doing diluted insulin.
Scott Benner 33:01
Okay? It was just such a little amount that it was never quite enough. I was having
Marley 33:06
to give him 13 shots a day. Oh, that's just too much,
Scott Benner 33:10
you know what? I mean, yes, you're giving these little little bits to hold down the higher blood sugars.
Marley 33:14
Yeah? Like he just, he needed those micro doses so that when we went to our six month think it was really seven month appointment to our Endo. I was about to tell her, like, okay, we're doing a pump. And she was like, Okay, you ready for a pump? And I was like, Yeah, we're ready for a pump. So we chose to do the tandem just from personal I just had talked to a bunch of different moms that I've met through Tiktok and socials and diapers and diabetes at Facebook group and seeing what works. And I was like, let's try the Moby. If, for some reason, the tubing doesn't work, we'll switch to the pods. But I want to try the Moby first. The algorithm, they say, is wonderful. It's lightweight. I love the ability that he can unclip it from his body. And you know, we'll just try it. So we started it in April. We go back to the end of, actually, at the end of this month. So I don't know is a 1c right now, but I think it's been a game changer. Like he's in range 90% of the day. He's doing really good with it. He's a he's a trooper. Like it doesn't phase him. Those site changes. He don't mind it. He don't care. He wants to help. And those micro doses are just everything, like they truly
Scott Benner 34:27
are. Those algorithms are awesome. Does he wear it on body, or does he clip it to his clothes? Or do you bounce back and forth?
Marley 34:33
So we kind of bounce back and forth. We'll use like, tandem pouches on his back. I do it on his belly, because his arms are so small, and then his legs, he's such a rough toddler, that every time I put it on his legs, it's falling off within 30 minutes. So we'll do those. And then we use the Spot belt a lot, and we clip it around his waist and put the spot belt either over his clothes or under his clothes. Nice. I kind. Of go between the two. Like, one week we'll do the pouches. One week we'll do the belt, just to give his body a little bring
Scott Benner 35:06
How do you divide the work? Your husband still works at home, right?
Marley 35:09
So, yeah, Chandler worked from home, and we just kind of tag team it. I feel like I control more of his treatments, his blood sugar treatments, like, if he's low, I'll kind of tell Chandler what to do, like, give him this many or give him this many carbs, or whatever. Chandler's really good about just helping. Like, if I need anything, if I need him to go change a Dexcom, he just kind of lets me kind of help him, lead him into whatever he needs to do. Or if I want to take control, he's like, go for it. Like you, do you? Do you?
Scott Benner 35:43
Has this year impacted your plans for your family? Are you considering more kids? Were you before
Marley 35:49
it definitely did. I feel like I definitely don't think I would have had another child by now, because I wasn't the kind of person that wanted to one or two or that toddler and infant. I didn't really want that, but it definitely hindered my mind and thinking that I want another kid, because there's so much that goes into diabetes, especially those first few months, you feel like you're drowning. But now that we're a year into this, and it just feels routine, I'm not saying it's not hard, because it's just as hard as it was day one, but it's more routine and we're more comfortable, and I don't feel as scared of insulin, and I don't feel as scared of trying new things, changing his pump settings. I think I could see myself in the future, having one more, only one.
Scott Benner 36:37
Now, if the reality became that a second child also got type one. I think I would die. I was gonna say it's not gonna change your reaction to it,
Marley 36:45
right? No, no, no, right. I could handle it, but I think I would like, want
Scott Benner 36:49
to be like, my guess there's got to be worse people on the planet, because something bad happened to one of them, please.
Marley 36:56
Yeah, I've seen kids, our families on Tiktok, and they have, like, multiple kids with diabetes. I'm like, Y'all are troopers. Like, I don't know how you do it.
Scott Benner 37:06
When we were growing up, there was this, this old guy. I don't want to say where I knew him from, because I want to be very vague, right? There's this older man, and he was just beyond a curmudgeon. He was just a prick, you know? And he went on and on. Like, didn't matter how old he got, how sick he got, nothing ever happened to him. It felt like he was gonna live forever. And few of us used to say that, you know, all over the world there are terrible people doing terrible things yet, and I'll just, uh, I'll have my friend Rob bleep this out. So we used to say, all over the world there are terrible people doing terrible things, yet still walks the earth,
Marley 37:42
which is true. Like, how does my baby end up with diabetes? And there's like, killers on the
Scott Benner 37:47
street? Yeah, we're shooting missiles at people and, like, your kids getting type one and you but did that shake your faith at all?
Marley 37:55
No, it really didn't. I feel like it kind of made me lean into it, because when we were in that helicopter going to Batson and in the middle of the night, and all you have are your thoughts, because your baby's in the back of the helicopter with the medics. I felt like I was like, God, like, if you're real, which I know he is, but God, if You're real, you will save my baby, and I will do I will literally be anything you need me to be, like, I just need you to save my baby.
Scott Benner 38:28
Yeah, I'm glad he's okay. That's wonderful. Also, what a bummer, like, because how often are you going to take a $10,000 helicopter ride and not get to really enjoy it? So, right?
Marley 38:38
Like, I remember sitting in that helicopter, in the pilot. He was so nice, but he kept, like, trying to make small talk. And he was like, what do you do for a living? I'm like, I'm a speech therapist, speech therapy. And I'm like, I don't care. My kid is dying in the back. Like, stop talking to me.
Scott Benner 38:56
You should have said I'm married, and my kids back there dying. It's inappropriate for you to be hitting me on me like this, because
Marley 39:02
I stopped. On me like this, because he's like, when we got in the helicopter, he's like, Okay, I know this is just standard, but he's like, don't touch these buttons. Don't touch the door until I unless I tell you to, don't try to jump out. I'm like, I'm not gonna try to jump out, my babies.
Scott Benner 39:17
I'm not gonna try to jump Hey, you know what? Don't make fun of him. I have somebody in my house this week doing some work, and I literally put my finger in wet, like plaster. I looked at it, and I'm, I fairly intelligent person, and I reached out and I touched and I thought, Why the hell did I do that? Anyway? He's probably had somebody just like, reach out, and he's like, don't you're gonna kill us.
Marley 39:41
Yeah. I'm like, Honey, I'm not worried about your doors, your buttons. Like, just get me to the damn house.
Scott Benner 39:46
Let's just get going. So you did something, I mean, 20 years removed from me doing it, but you did something that I did, too. And I'm wondering, because I'm gonna I'm an older person now, like, I'm not that old. But I'm like, you know, I'm not 27 you know, the year after Arden was diagnosed. You know, pretty much exactly a year later, maybe not even maybe it's like six months later, if I'm thinking about it correctly, I started writing a blog before a blog was really a thing. I'm not saying I wrote the first blog in the world, but there were not a lot of them when I started doing it. And the technology just wasn't really there. I think WordPress was probably the only way that people knew about to put a blog up at that point. I did it initially because I had tried to raise money for a JDRF walk, and I remember just, like, raising, like, $1,000 and thinking like, Well, this was lame. Like, put a lot of effort into this. I wanted people to know more about it. I also wanted to try to help. I had that, that kind of overwhelming feeling, like, I'm not a doctor, but I want to do something. Yeah, you know. And then I didn't really raise much money, and I was like, Oh, this is a bummer. And I thought, well, maybe, maybe people didn't donate because they didn't understand it, and I'll, like, try to help them understand it more. And I started writing about it. And then I have to say, over the, I think over the next nine years, we did the walk for 10 years, we don't do it anymore, but I think we're doing our first one this year. Yeah, I raised $50,000 total in 10 years. That's awesome. Yeah, it was pretty, was pretty great using basically that blog to, like, try to educate people about what type one was like, Yeah, but then it became something I didn't expect it to be. It was almost like its own little community. And 2013 rolled around. So I had been writing the blog for six years, and I'm just gonna tell you, like, I got a book I got a book deal. I was writing a book blogging was kind of dying at the same time, like, people just weren't really reading the way they used to. I mean, the book took a year to write, it came out, etc, and then I was out, like, doing media for it, and I just started, you know, that led to me having an idea about making a podcast. And I think, again, I was maybe a little ahead of the curve, like, you know, making a diabetes podcast, and I launched that in, like, January, again, 2015, so now that's I've been doing it for 11 years now, and I feel like I've built a pretty kind of immense community of, you know, yeah, you definitely have for people. Thank you. I watch it help people all day long, every day, seven days a week, you know, 365, days a year. It's pretty massive and sometimes hard for me to even conceive of of all the people. It's touching, but at the same time, like, I didn't do any of that on purpose. Yeah, that's kind of how we were, yeah. And the technology wasn't, like, like, the blogging technology was not a thing. And there were podcasts going for, like, a couple of years, but I was pretty again, sort of at the edge of it, like, you know where it was going on. So you decided to, like, pick up your phone and start a Tiktok, and I'm wondering why you did it. Like, what was your goal and what has it become?
Marley 42:56
I've always been like, a Tiktok theme. I never posted, but I'm a doom scroller. Like, that's what my husband calls it. Like I will sit there and scroll on Tiktok and watch the dumbest videos all day, every day, and me and my best friends send videos to each other. So I've always had an account. Well, Bane had probably been diagnosed four months, five months, and I think he was, like, 15 months old. I took a video of me putting on a Dexcom for him, and I actually was sending it to my mom because she had never seen me put a Dexcom on him, and I was on Tiktok, and I was like, I'm just gonna post this to show my 50 friends. That's all that followed me. 50 had 50 followers. They were all my personal Facebook friends from, you know, high school, college, whatever. And I posted it, and the video went like, mega viral, like within I still had notifications on at that point. I started getting all these DMS and requests, nice comments, horrible comments. I mean, you know everything, sure. And I think the video now has like 3 million views, maybe 4 million something like that. But, I mean, it was crazy, yeah. And just from seeing all the comments on that video, it was very it showed me that no one understood diabetes and toddlers like, I mean, just, you know, the normal stuff, like, why you feeding your kid junk food? How to get diabetes? Or, I didn't know babies could get diabetes. How do babies get like, it was just, you know, the dumbest questions. But I understood, because people don't understand that. Yeah, you get why would they understand it? They've never been through it, yeah. So I think the next video I posted was, like, telling people how he got diagnosed, because people would be like, I'm glad you called it so early, or I'm glad you figured out. I'm like, we didn't catch it early, like he was in DKA, yeah, we called it the last the last second.
Scott Benner 44:54
This wasn't early. This was a day before he died, yeah, literally, like, we
Marley 44:58
called it the last second, just. Because he's 12 months old. He was he had, like, hours, probably, of his life left. So we started posting on Tiktok, and it grew so fast. And I think it continues to grow, because people now love Bain, and they see his language developing. They see him getting his own little personality, and him learning about, he's learning about diabetes, and he's learning the things you know, that we do on his day to day life. We change Dexcom, we change sites, we count carbs, we we get our Med, you know, like he's just understanding those things, and people like to follow along with that, because I'm not going to give myself props, but I am a speech therapist. So his language is like crazy. He talks in five word sentences, and he's not even to get so people just are like, how do you do like? How does he talk like this? How does he tell me about diabetes? How does he let you just put his Dexcom on? He don't fight you. So I just started kind of like posting little snippets, and it just grew so fast. I followed one other person on Tiktok that had diabetes at that point. Her name on Tiktok is called wonderful wells, and her son is, like three. He has diabetes, I think he was four at the time, but he got diagnosed when he was three. And she would post videos of putting sites on him or whatever, and just informing people. And I think she, at that point, she was raising money to get a diabetic alert dog. And so, you know, when you're in that hospital, the first thing I did was join diapers and diabetes Facebook group. I joined the Juicebox podcast group because everybody on diapers and diabetes told me to do that. And I ordered a sugar pixel, and then I looked up diabetes on Tiktok like that's just what I did.
Scott Benner 46:45
That was it just got going, How many followers do you have?
Marley 46:47
No, I think we have 127,000
Scott Benner 46:53
Can I let me? I'm gonna try to find it while I'm talking to you. So I'm oh my gosh, a person. I am not good at tick tock. I just want to say that
Marley 47:01
immediately I love I'm just the oh, we're have 128,000
Scott Benner 47:05
what's your what's your like? How do I
Marley 47:08
at Marley, M, A, R, L, E, E, Brandon and I, I feel like now I don't post as much diabetic stuff. I do post diabetic stuff, but I post a lot of him just acting crazy.
Scott Benner 47:20
Okay, it's, uh, are you in like a black and white striped top? Yeah, yeah, yeah, okay. Well, now you have one more follower. Congrats. Thank you. Thank you. You have a follower of the guy that's not on tick tock very often. Wow. Yeah, you have almost 5 million likes total on your on your videos.
Marley 47:37
That's crazy. Yeah, people really love bang, like they really do. So when
Scott Benner 47:41
I started doing this, it was a, it's a blog, right, yeah, and there'd be one static picture. And to be truthful, after Arden hit a certain age, she came to me and she said, I don't like looking like a baby on the internet, yeah. And I was like, okay, so we removed every picture we could find from the blog and everything. And even, like, the mast head of the blog got changed so that it was used to be a photo of her, and then it became like a caricature. And then eventually the blog's not called Arden's day anymore. It's called Juicebox podcast.com now. Yeah, right. I mean, obviously he's very little right now, and the world's a different place, and kids are more accustomed to this. This is like a thing. But do you have you given thought to, like, how long would this go for? And at what point does he get an opportunity to say, like, I don't want people seeing this. Or like, I mean, it's got to go on through your head, right?
This episode was too good to cut anything out of but too long to make just one episode. So this is part one. Make sure you go find part two. Right now it's going to be the next episode in your feet. I'd like to thank the Eversense 365 for sponsoring this episode of The Juicebox podcast, and remind you that if you want the only sensor that gets inserted once a year and not every 14 days, you want the ever since CGM, ever since cgm.com/juicebox one year, one CGM, Arden has been getting her diabetes supplies from US med for three years. You can as well us, med.com/juicebox, or Paul, 888-721-1514, my thanks to us, med, for sponsoring this episode and for being longtime sponsors of the Juicebox podcast. There are links in the show notes and links at Juicebox podcast.com to us, med and all the sponsors. Summertime is right around the corner, and Omnipod five is the only tube free automated insulin delivery system in the United States, because it's tube free, it's also waterproof, and it goes wherever you go. Learn more at my link. Omnipod.com/juicebox That's right. Omnipod is sponsoring this episode. To the podcast, and at my link, you can get a free starter kit. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox, I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of The Juicebox podcast. If you're looking to meet other people living with type one diabetes, head over to Juicebox podcast.com/juice, cruise, because next June, that's right, 2026, June, 21 the second juice Cruise is happening on the celebrity beyond cruise ship, it's a seven night trip going to the Caribbean. We're going to be visiting Miami Coke, okay? St, Thomas and St Kitts. The Virgin Islands. You're going to love the Virgin Islands. Sail with Scott in the Juicebox community on a week long voyage built for people and families living with type one diabetes. Enjoy tropical luxury, practical education and judgment, free atmosphere. Perfect day at cocoa Bay St, Kitts st, Thomas, five interactive workshops with me and surprise guests on type one, hacks and tech, mental health, mindfulness, nutrition, exercise, personal growth and professional development, support groups and wellness discussions tailored for life with type one and celebrities, world class amenities, dining and entertainment. This is open from every age you know, newborn to 99 I don't care how old you are. Come out. Check us out. You can view staterooms and prices at Juicebox podcast.com/juice cruise. The last juice cruise just happened a couple weeks ago. 100 of you came. It was awesome. We're looking to make it even bigger this year. I hope you can check it out. If you're looking for community around type one diabetes, check out the Juicebox podcast. Private Facebook group Juicebox podcast, type one diabetes. But everybody is welcome. Type one type two, gestational loved ones. It doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort or community, check out Juicebox podcast, type one diabetes on Facebook. The episode you just heard was professionally edited by wrong way recording, wrong way recording.com, you.
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