#1940 Joint Pancreas
Joint Pancreas
Michelle and Don's son Carter was diagnosed at six. Two years in, they talk about the signs they missed, staying a team through it, and the thing Carter said when he heard about a cure.
Jump to a moment
- Every sign was there, and they still didn’t see it. Carter had the flu, then never bounced back — curled in his mother’s lap at six, asking for apples and bananas, and finally unable to make it home from the bus stop. At a Saint Patrick’s Day gathering they watched him refill a water bottle and ask for the bathroom perhaps twenty times. Michelle had Googled it and seen diabetes, then dismissed it because there was no family history.
- The autoimmune history was hiding in plain sight. Don has hypothyroidism, one of their daughters was later diagnosed with it, and Carter had been treated for allergies and asthma beforehand. Scott’s point: had anyone asked the autoimmune question, the conversation would have taken four seconds. He also pushes back on the advice Michelle got — don’t Google it — arguing he’d rather be wrongly worried than miss it.
- They treat it as a two-person job, on purpose. Michelle describes a fork in the road for any couple facing something life-altering: lean in together or let it pull you apart. She credits the diagnosis with bringing them closer, and calls what they built a joint pancreas — trading nights, admitting to each other when a bolus went wrong. Scott notes the research that a chronic illness in the family raises divorce risk considerably.
- The line that stopped the room. Telling Carter about a trial in which adults were reportedly cured, Michelle asked if it wasn’t inspiring. He answered that even if a cure were available to him, he’d rather it go to someone who hadn’t already been living with it a long time — because he’s already pretty good at it. He was eight. Both his parents credit a family culture that treats diabetes as something you handle, not something to be sad about.
- Pump settings don’t transfer between systems. After strong results on Omnipod 5, they tried Tandem for a few months hoping the algorithm would catch highs, didn’t match their previous time in range, and went back. Michelle wonders aloud whether it was user error — they were used to being hands-on. Scott’s framing: settings are not one-to-one across systems, and a growing kid, a season change, or a new sport moves them anyway. Not medical advice — settings changes belong with a care team.
- Diabetes Pro Tip series — Episodes 1000-1025 — settings, insulin timing, and food impact, the three things Scott returns to here.
- Bold Beginnings series — Scott and Jenny Smith for the newly diagnosed — the questions everyone has in the first weeks.
- Juicebox Podcast Facebook group — The private community — the kind of place the family that sent Michelle and Don supplies came from.
- Juice Cruise 2027 — The third annual Juicebox community cruise, sailing next July.
Every word of the conversation
Cold open & sponsors0:00
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So why don't we start with Don, introduce yourself, then Michelle introduce yourself when he's finished, and we will we'll just keep talking.
Okay. Alright. My name is Don. We we live in New York. We have a family of of five.
So my wife, Michelle, will introduce herself in a minute. Our daughter, who's 11. Our son, who is eight, who we'll be talking about today, and then another daughter who is five.
Three kids. Michelle, how are you?
Three kids. Good. Good. Thanks for asking. Yeah.
So we have three kids. Life is busy. Carter was diagnosed at six, so we've been living the world of diabetes for the last two years or so. Mhmm. And, you know, that's a whirlwind.
Don and I both work in the education system, so that's really been great to help us kinda navigate some supports for him, you know, most most of the year.
Really? Awesome. I'll find out more about that. What made you wanna come on the podcast?
Well, we've been listening to you for a while, getting the advice we can from you and Jenny and anybody else that's willing to chat with you. And when you opened up this this series, I talked to Michelle. I'm like, know, maybe it's an opportunity for us to you know, whatever part of our story might resonate with somebody else might help somebody else. You know, one thing that guess, you you probably have questions about some of this, but when, Carter was diagnosed on 03/18/2024, there was a friend of Michelle's, from her past whose daughter had been diagnosed in October just before that, and they sent us, you know, sheets. They sent us information.
Why they came on4:33
They sent us snacks. They sent us diabetes supplies and, you know, really used their experience to help us get start somewhere, because where do you begin when that all happens? And we, a few months later, had the opportunity to do the same thing for another family, and it just seemed like an opportunity where maybe just even if a small part of our story might resonate with somebody else and help them with a strategy or just encouragement. So that's kinda what led us to to being on here with you today.
Oh, so you got you you wanna give back, you're telling me?
Yes, sir.
I love that.
That's the goal.
That's awesome.
Okay. Cool. We'll figure this whole thing out. So but first, we wanna talk about how nervous Michelle is. Michelle, what do you mean you're
Well, we kinda didn't realize it was today was our big day, and we're, like, kind of in envy of even being able to be speaking to you. So just wanna make sure we do a great job. And so I guess I'm just nervous.
Well, you don't you definitely don't need to be nervous. I know I had to I had to call this morning. I wasn't sure who was gonna answer. And it was Don, and he's like, oh, it's strange to be talking to you. And I was like, yeah.
Yes. Super celebrity envy.
And that isn't that bizarre? It is really so I was just explaining to a friend of mine who was asking me about Friends for because I just got back from Friends for Life. And and the friend's like, you know, how'd it go? And I said, oh, you know, it went good. I I guess I talk about it more, like, clinically because she's not involved in diabetes at all.
And I was like, you know, we filled rooms, like, when we talked, which is good. Because, you know, there's plenty of times at every event where some poor soul is in a room talking to three people. And, you know, and and and you just feel terrible for them. And I my ego won't handle that. So I would definitely pull a fire alarm if that happened.
I would I would a 100% go, oh my god. Everyone look over there. It's Bigfoot. I would
run right out the back door.
And then they'd be like, where'd that guy go? And I'd like, he's not gonna he's not gonna be caught dead in a photo with four of you and chairs spread around the room. So I was explaining to her that, like, you know I was like, you know, we had I I'm gonna guess in that room, it was myself and John from Sugarpixel, and we might had 250, more than 250 people in that room. Wow. Was really it's great.
A giant room. It was packed. You know? And so I'm explaining it that way. And she's like, well, how many people are at the event?
I said, well, you know, they say two two thousand. I said, but I think that I think that includes, you know, volunteers, almost 200 volunteers. I'm sure they're counting the, you know, the vendors and the and the people that so I said, I don't know. You know, I honestly don't know. Fifteen, seventeen.
I don't know. Like, there's a lot of people there. She goes, well, 250 is a pretty big chunk of that number. And I said, oh, yeah. I'm famous there.
And she's but she doesn't know me like that. She's like, what do you mean? I'm like I'm like in certain places on the planet, very few of them. I'm like I'm like I'm like George Clooney, like circa ER. You really are.
Wow. Not the not the look, Don. But you know? And and and she's like, oh, I had no idea. And I was like, yeah.
It would be no reason for you to know because in every other aspect of my life, that is that is not that is not the truth. I I guess I have what they call Internet fame. So
Yeah. Alright.
That's no reason but, Michelle, that's no reason to be nervous because you could easily be her and know me a different way is my point.
Fair enough. Fair enough. But in the diabetes community, for sure, famous. George Clooney famous for sure.
Well, you're very nice. And and but but you're not still nervous. Right? Like, this has gone away now?
Yes. No. I'll be good. I got it.
My dumb story is relax every morning.
You made me feel way better.
Thank you. Yeah. No. I mean, honestly, you should probably be I should probably be thanking you. Actually, I should be.
Thank you for doing this.
I really do appreciate it.
So it's pleasure.
Yeah. Is there any other autoimmune in your family at all between you guys, your other kids, or even grandparents, aunts, and uncles?
The autoimmune that was already there8:36
Yes. Yes. We have myself, I have hypothyroidism since I was I was pretty young. One of our daughters has since been diagnosed with that. So there's a couple quick ones there.
Michelle, there's always something I forget, so chime in. Who who am I forgetting?
Well, also prior to Carter's diabetes diagnosis, we were working with allergy and asthma, which I was told is also kind of in the same family as autoimmune and typically starts to show up in that category as well. He he's kind of ebbed and flowed with his diagnoses there, you know, kind of been generalized. So I would say that's kinda actually how he started presenting with some forms of autoimmune prior to his diabetes diagnosis.
Yeah. My I had terrible, terrible allergies when I was younger. And they and they, like like, couldn't go outside in the summertime sometimes. Diabetes, as you know, comes with a lot of things to remember. So it's nice when someone takes something off of your plate.
US Med has done that for us. When it's time for Arden supplies to be refreshed, we get an email. Email just rolls up in my inbox. It's like, hey. This is, you know, time for your supply order.
I don't exactly know what it says. I open the email. There's a big button. I click on it. I reorder, and I'm done.
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And it's a thing I've almost not forgot about, but it changed so drastically as I got older that it doesn't really I'm not bothered by it anymore any longer. But when when my son was recruiting for college baseball, we had to do a lot of, you know, like like, I don't know, like, tours of different, you know, campuses, and you'd go meet teams. And there's a lot of, like, overnights with guys and, like, you know, trying to, like, see if you mesh with people before you say you're gonna go somewhere. And one of actually, in New York, in maybe more not upstate, but in that direction, he did an overnight, then he went out to a game the next day. And he almost couldn't, like, live there.
Like, he was Yeah. Yeah. He was fall he was falling apart. And he's like, can't I can't come here. And I was like, okay.
And then later, not a year or so later or maybe two years later, we figure out he has Hashimoto's.
Oh, interesting.
Yeah. And then, you know, my doctor tracks my thyroid, but it seems fine. Good. But yeah. But it's just really so, Michelle, what we're saying is that on that first date, you should have said, Don, you have any autoimmune issues?
Because Mhmm. And he would have said Hashimoto's. If you knew what you knew now, you'd be like, oh, that's nice. I'm gonna find a different boy. I'll talk to you later.
That's
all mine.
You almost No. I would never have done that. Really?
Good thing she didn't. Oh, good thing she didn't.
Thirty years, and staying stubborn13:11
I'd be homeless in case you're hungry. But but wait. Michelle, that's interesting. Let's do that for a second. How long have you been married?
We're going on what, Don? Thirteen years? Eleven, twelve, twelve?
How old are you? 12.
We've got 11, eight, and five.
Okay. And you are how old, Michelle?
I am 38.
You're 38. You got married when you were 26?
Yes. 20 yeah.
Wow. You know next month, I'm gonna be married for thirty years.
That's amazing. Congratulations. Is it?
I I told I I I was on a my son for my birthday, my son went and played golf, and I rode around with him. That's what I got from my that's what I got from my 50 birthday last weekend.
Quality time.
Yeah. Yeah. Yeah. Well, that that part was great, but I'm like I'm like he's like, hey. You wanna go play golf?
I don't play golf. I'm like but so I I we hang out. You know? It's a nice thing to do. He's like, get out in the sun and everything.
But he gets stuck in a stuck. Wasn't the right word. He got put in a foursome and two much older guys, 72 year old guy, 65 year old guy, probably a guy my age. Right? And they're all talking about at some point being married.
These guys are like, I was married for thirty four years. I've been this, that. And they were all, like, in their mid thirties years. And they said, how about you? And I said, oh, actually, in a couple of weeks, I'll be married for thirty years.
The guy's like, my god. How old are you? And I was like, I am taking this as a compliment. And so Right. Yeah.
But they said, what what's your secret? They all said the one guy goes, my secret was I get upset. I go to the bar. I don't come back till I relax. I was like Oh, no.
I'm like, okay. I said, I've willfully not gotten divorced a couple of times. I'm like, you know, like, when you're sitting in the in the house and you're like, what if I just left? Would that be okay?
And like,
assuming my wife did the same thing probably more than I did. I was like, that's it. You just have to be stubborn. Oh, that's a good word for it. Yeah.
Yeah.
A joint pancreas15:09
It's it's funny because when Carter got diagnosed or, yeah, think when as a family, you or a couple, you go through something that's, you know, life altering. I said to Don on multiple occasions, like, as a couple, you could either lean into each other and figure it out together and support each other and navigate it together, or I could easily see how if you didn't do that and you disagreed or you weren't able to communicate well, how it could also tear you apart.
Yeah.
And I was so thankful through Carter's diagnosis. I would actually say it probably brought Don and I closer together because we've been able to really work as a strong team, you know, a joint pancreas, I would say.
Yeah.
But I I remember at, like, certain points, I'm like, oh my gosh. Like, even watching friends go through it, like, the amount of stress, the amount of work that it takes, the amount of time that it takes, the amount of sleepless nights that exist. If it's not a team effort, I I could easily see it being one of those things that's like, oh my gosh. Like, I don't know. I don't know.
It really would put a strain on any any strong marriage.
Yeah. The the the data says rate of divorce goes from one and two to two and three with a chronic illness in the family.
For sure.
Yeah. So I I well, that's nice. Well, what do you think you guys willfully did? Let's stay with that word for a minute. What do you guys think you willfully did to make it go that way?
Constant. I I listened, and I stopped talking when she seemed to
Do what yeah. Do what Michelle tells me to do. Think I'll I'll take this one first, Michelle, then you can Okay. Tell the reality. This couple think
we Sorry,
Don. That that was funny.
I tried to be.
I'll give you my opinion, and then you'll tell me what's right.
Yeah. This is this is how the next hour will go, I No. I think we each have our own way of processing it, you know, and doing our own homework and research and, you know, whether it's listening to the podcast, talking to families we know, and, like, trying to figure things out on our own, and then we we come together. And, you know, we don't always approach things exactly the same way, but we we share what we wanna do. We we find out what works, and then we try and figure out what's best for the kid.
You know? Like, what's what's actually being productive for for Carter and and the family. So I think it's, like, the open night my open mindedness to work through it. And and, I mean, you're gonna get frustrated at moments. Like, yeah, if if I have him alone and, you know, I I don't bolus correctly and, you know, he's got high for a while, like, I feel bad about that.
I get a frustration level about it, but we don't you know, it's it's something we can admit to each other, like, this is how I did this, and I didn't do it well, or this is how I did it and worked out, we should try this. I think it's the nights can be hard. I we're coming off a relatively sleepless night because I think his his Dexcom was off, and it was kept projecting low when he wasn't. So a lot of finger pokes and up over the night, and it's kinda taking turns. So, like, I'll do this one.
I know she just got up probably an hour ago, so I'll take this one. Just sharing those responsibilities.
So How long have
you general, down? Something specific. What's that?
Is that Couple years diabetes?
Yeah. March March eighteenth twenty twenty four. So
Because to Once once that thing's reports low once or twice, you're still getting up and checking even though you figure it's not right?
Good question. I I think last night at some point, said to Michelle, go, if I I do the finger poke and it's not, you know, it's it's not low, we're we're we're not doing this again, and we're taking the Dexcom off tomorrow. And we we we did hit that point yesterday because I think he was one forty three or something. You know? So I'm like, alright.
That's it.
Did you try to calibrate it?
Yes. Yeah. It did. Couple of times.
Yeah. So is it an older older sensor?
No. Five days.
It was five days. Yeah.
Is it are they seven days or ten or ten or fifteen day what sensors?
Tens.
Tens. Okay. Oh, we're using the fifteens now. They're working really well.
That's awesome.
Yeah. Yeah. No. Are they I guess we haven't been prescribed that. I don't he's only eight, so is he he's too young as far as we know to use the fifteen day.
I mean, you just cough when you ask the doctor. You go, fifteen day.
Yeah. Okay. As long as they'll
do it. Okay. I guess, like, I thought they weren't approved yet. So it's
Approved and what they'll prescribe are two different things. Oh, okay.
Fair enough. Fair enough.
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I know. I should. I should. Wait. Too honest for my own good.
Easier to ask for forgiveness than permission?
So true.
That's all. Yeah. Yeah. Yeah. I mean, that's how I'm getting through.
So okay. So you did, at some point, say to yourself, like, this doesn't matter. Like, I'm not getting involved in this anymore. Like, Arden, last night, was riding really, like, right at eighty, like, all night long. And then the problem is if she flips over and lays on it for five seconds, it doesn't take long for it to, like, all of a sudden look like sixty eight.
And her alarm Right. Her alarm set at seventy. Right? Actually, the truth is if I set that alarm at sixty seven, I don't think it would ever beep. And maybe there's some common sense of me doing that.
But but it's at seventy, and it beeps. And then you you look, and you go, no. That looks like compression. Looks like compression. But it kinda doesn't matter if you get woken up.
Right? Right.
Like because it it happened it happened this morning. That I'm so grateful it happened eight minutes before my alarm was gonna go off because Kelly's like she's like, hey. Is she low? And I opened my eyes, and I was like, no. That's gonna that's compression.
Like, that's gonna flip the next time it it it regenerates again. I was like, just wait. And it did. It went, like, right back into the eighties. Yeah.
But then I was awake.
I know. Yeah. That's the hard part.
Compression lows and an abandoned mall21:56
It didn't matter. I I and then on nights when you still can like, the diabetes is okay, like, two nights ago, I am up at 04:30 in the morning, woken by a bad dream, still diabetes fall. I'm dreaming that Arden and I are trapped in an abandoned mall. And I've brought some juice and food, but I don't have enough. But it's okay.
So I I, like, hunker down so we don't move too much so she won't get low. And we're trying to find our way out of this abandoned mall. I don't know why an abandoned mall. And then something starts chasing us. So we have to run.
And when we run, her blood sugar starts to get lower. And then I start using up the food and the juice that I brought. And then this, like like, in the dream, I'm getting more and more anxious that we're running out of food. And then I can't get her blood sugar to come back up, and then I run out of snacks, and then I wake up in a panic. And then I can't go back to goddamn sleep.
Sleep. Yep. Yep. Yep.
Yeah. And now I'm up at 04:30 in the morning. And then last night while I'm trying to watch the all star game like American, I can barely I can barely stay awake. I I it's my it's my annual watch the National League lose the all star game evening. Yeah.
And and Traditional. Oh my well, you it it is what it is. And and there I am, like like a like an old man on the sofa, like, 45 going, god. I'm really tired. My eyes
hurt. So
and one way or the other, the diabetes got me. What were the signs, Michelle? I'm assuming you figured out that the child had diabetes.
The flu that wasn’t the flu23:37
Actually, I have
Go ahead.
I'll I'll give the the credit here, the end of it to Don, but, we had a a couple of things happen. Carter was diagnosed with the flu, and was very, very sick first. And he also had a birthday around the same time of his diagnosis, so we took him in. We got his diagnosis. I brought him back a week later for his physical, and I said to the pediatrician, I'm like, something is just not right.
My six year old son is still curled up in my lap like a baby. A week later, super sick. I really feel like, you know, we're missing something. And he's like, no. You know, this this can happen.
You know, depends on the strain of the flu. He'll bounce back. Don't worry, mom. It'll be fine. So we left.
Right? I'm thinking I'm just being over the top. I'm sure he's gonna bounce back and be fine. I know our story is is common after reading other folks and listening to other folks. Coming off of that, Carter was doing the things that we thought we would attest to a healthy growth spurt, like asking for apples and bananas for a after dinner snack.
And we really hadn't noticed water consumption immediately. That took us some time. We definitely noticed weird foods being requested, but we were like, maybe his body's just trying to recover from being so sick for the last two weeks. He just needs something.
Mhmm.
Then we had an incident where our daughter used the bus driver's our older daughter used the bus driver's cell phone to call me and said, mom, you've gotta come pick us up from the bus at our neighbor's house. I was like, what are you talking about? Is everything okay? She's like, Carter absolutely has to go to the bathroom, and he cannot cannot make it. And I'm like, what?
She's like, yeah. No. He you you have to come. So I did. And, unfortunately, by the time, you know, we had gotten there, it was it was an emergency status for him.
Yeah. And he did need to get off the bus. He would not have made it home. This then happened again, I'd say, maybe a week later. And at this point, my brother who is was in school to become an internal medicine doctor, who now is, I called him, and I'm like, what is going on?
Why is my six year old all of a sudden not able to
Make it three more houses down on the bus. Yeah. Jeez. Yeah.
Right. Like, not make it home. Like, I don't I don't understand what's going on. And that was Friday that I vividly remember because my brother was like, I'm gonna text, one of my coworkers who's, you know, specifically pediatrician, see what they say, but I would just schedule an appointment for Monday. If you're concerned, just schedule an appointment for Monday.
He's like, do not Google. Do not go down that rabbit hole. It's not a rabbit hole you wanna start. He was like, your family history is that, you know, everybody's healthy. Let's just get through the weekend unless he starts to get more sick.
Wait for that Monday appointment. So we I kinda shrugged it off. I did Google it, and I did see diabetes come up. And I'm like, there's no way. We have no family history of type one.
This it can't be yet. This has to be another virus. You know?
You've heard of the PP virus. Of course.
Yeah. Yeah. It's everywhere. That's great.
So we then were out with friends on Sunday night at a it was I think it was Saint Patrick's Day. Right, Dom?
Mhmm. Yep.
It was like a Saint Patrick's Day kinda get together. And we're all at watching a live band, and we're kind of out at a pub. And so we're watching Carter, and he's just refilling his water bottle. Of course, since we're at a restaurant, we have to take Carter to the bathroom. And he had to have asked us to go to the bathroom, like, 20 times and filled up his water bottle an astronomical amount of time for any human being, to which point I looked at Don, and I think we both knew something was really, really wrong.
Mhmm. The plan was Monday afternoon. He had an appointment to go, so we were all off to school and said goodbye like a normal Monday. I'd I head off to work first, and the plan was I was gonna take a half day and bring them. And I remember getting a phone call from Don maybe twenty minutes after I left for work, and he's like, Michelle, I just looked at Carter.
He looks cold. He looks sick. I'm not waiting. We're going right to walk ins. We need to go now.
So he dropped off the girls to school, and they took him right back at the walk in. And my next phone call was the doctor and Don telling us that we were going straight down to the hospital, not not stopping at home and getting him there as fast as we could.
Because Google knows things.
Because Google was right.
“Google was right”28:29
Wasn't that interesting, though? Like, so it's your brother's the physician? Yes. Okay. What kind of doctor?
Internal medicine.
Okay. That that I was hoping it was a podiatrist for the story, but okay. So you you're it's just interesting how we think about things. Like, you're a healthy family, which I guess what he means is is that we haven't seen any massive illnesses. Not Right.
Like, because, if you said that to me like, if you would have come to me and said, hey, Scott. I don't know you, but this is what's happening to my kid. I'd go, oh, how long has that been going on for? And then you'd tell me, and I go, is there any autoimmune stuff in your family? And you'd say, well, Don has Hashimoto's.
And I'd go, oh, your kid has type one diabetes. And that would've been, yeah, it would've been like a four second conversation you and I would've had. Also, if you would've asked, like, any one of the AIs, it would have told you the same thing.
Well, it's funny that you say that because the couple who we happened to be with that day, when Carter was drinking all the water and going to the bathroom constantly right before his diagnosis, they were with, friends of ours about a month later who were just talking. They're like, I don't know. Our daughter's doing all these things. It's so bizarre. And they were like, you need to talk to Michelle and Don.
That's exactly what Carter was doing. And everyone, you know, in that our friend group knew that Carter had been diagnosed, and sure enough, she was diagnosed the next day. So as she was talking to Don and I at the lacrosse field, I'm just, like, squeezing Don's hand. I'm like, she for sure is getting a type one diagnosis today. I'm like, I'm not gonna be the one who says it out loud, but I'm gonna be there for her when she, you know, when she gets that news from the doctor.
But as soon as she started listing her daughter's symptoms, I was like, yep. A 100%. So
This is what's gonna happen. I I I don't know. It's well, I'm glad he's okay. I mean, it sounds like he was really at the end there. I mean, his body was cold, Don.
Was it were you did you think he was gonna like, I don't I don't wanna say this out loud, but do you do you think, oh, he's gonna die? Like, this is bad, or where were you at?
No. I didn't think it was I did not think that. No. I just just given all the symptoms and the fact that he'd been feeling bad for so long, like, he he was we're just sitting there having breakfast at the island in the kitchen, and he's like, I feel cold. You know?
Just just a different symptom on top of all the other symptoms. And I'm like, yeah. We just we gotta go. We can't wait. And, you know, I guess to your point is, like, every everything was pointing towards diabetes, but it was almost I don't know if it was denial on our part.
Mhmm. You know, like, how could that be? What do you mean? There's no history. Like, it's just the virus is coming out differently.
No. I It all like, in retrospect, it's ridiculous for us to think anything else. But in the moment, it was like, it's gotta be something else. It it can't be that.
Well, this is where the argument comes from where people are like, you know, there should be testing and, you know, every doctor's office. Any flu like symptoms should get a blood sugar chest, and that that's where because there's no real answer to how would I know about a thing I don't know about.
Right.
Right.
Yeah.
Right. Because they I mean, you you like, you today say I should know, but you back then had no idea. Although, I I I have to say, I fundamentally disagree with the idea of don't use the Internet. So I I just don't don't understand that at all. Like, the the history of the world's on the Internet.
You know what
I mean?
That's the I asked that. I'd rather I would rather be pan may I I'd rather be panicked that my kid has diabetes and doesn't than whatever's gonna happen if we don't figure out it's diabetes or whatever or whatever else. That's all. Anyway.
Knowing my brother, he was probably just trying to keep me from, like, having a panic attack until I could actually do something about it on Monday.
Go to a doctor's office.
Oh, you you you guys
live too far apart. He couldn't come over?
Oh, well, he wasn't certified yet then. Couldn't do anything for us then.
Yeah. Not a doctor yet. I figured a teacher that says that. Not a doctor yet. So okay.
“Most kids come in in a coma”32:12
So once he's diagnosed at the hospital, is it a long stay? Or
No. We were we were fortunate. Carter walks himself into the hospital, which we were told multiple times was a blessing that most kids his age do not do that. There's usually some sort of medical emergency. We were able to get in right away.
We stayed, I believe, on just one night. Correct?
Just one night. Yeah.
Yeah. Can I stop you for
a second? Because we were told the same thing, and I've I I in hindsight and a lot of hindsight because Arden's just about twenty years into this now. But the whole, like, oh, you know, usually kids your daughter's age come in in a coma is what we
were told.
Yes. Us too.
And and you get told that as a way of you getting to feel like you did a good job or that you're lucky or whatever. But if you flip that around and look at it a different way, what you see is that the way we figure out that people have type one diabetes is so inept that often they show up in a coma.
Right.
You you know what I mean? Like, there's another way to think about that. And so I it would be nice if the medical community, instead of going like, oh, I don't know how you got this one here without being comatose, but way to go, said to themselves, I wonder how we could help people figure this out sooner. For sure. Yeah.
It's just it's just an interesting I don't know. I I find a lot of stuff around diabetes works this way. Like, the the one where they go, like, you know, in a year, you're gonna know more than me about it. And I and I used to think, oh, that's that's interesting. That means I'm empowered.
I'm gonna know more than the doctor. And now it just makes me feel like, why won't the doctor learn more about it?
Is it
this way? Yeah. How about if since it's your professional calling, you don't let me outpace you on knowledge? How would that be?
Right.
Yeah. But anyway,
I don't know We why feel that way.
You guys are so nice, and I seem upset for some reason. I have no idea why. I'm sorry. So you're in and out of the hospital pretty quickly.
Pretty quick.
Yeah. What's the
what's the what's the baseline knowledge you get coming out of there? How do you start pulling together your, you know, your your community around the whole thing?
Well, our I think our biggest drive to get home was that we left our other two kids with, like, here you go. We're going to school. It's a normal day. And then, you know, they got off the bus to grandparents saying, your brother's in the hospital. Mom's not coming home, you know
Yeah.
Type thing. And we wanted to recognize that the diagnosis isn't just impacting us and Carter, but also his siblings. And I think that's also something that we sometimes overlook is that it does impact the entire family, not just the diabetic and the caretakers, the primary caretakers. So we met with a diabetic educator who at the hospital wanted us to meet with them and another family, and I really advocated that we just meet our family. We were both Don and I were both in shock.
We were very emotional. We were trying very hard to hide our emotions from Carter and stay strong in front of Carter. And, you know, we we wanted to learn everything that we could as fast as we could to keep him our our line at home is to keep you safe and healthy. And, you know, I think as soon as we knew this was the boat we were in, even though we were, I don't know, emotional zombies, I would say, didn't even know which way was up. I think we both attacked it with the the thought of, like, we're just gonna learn everything we can and do everything we can to to learn as much as we can to keep him healthy and help him through this.
Is this who you guys are, or is this a part and parcel with your profession, do you think, the way you're thinking about all this?
I don't know. I think it is partly just kind of by design who we are. I think we both working in education. Right? We choose to serve and to help others and wanna see everyone succeed.
But I think that in general, you know, our parenting and our our understanding of the world is if we could help others be successful and thrive in any way. It's medically, if it's a different way, you know, we're we wanna help. So, you know, I think our biggest thing with Carter, and I hope with any diabetic, is knowing that it doesn't define them and that this is just part of their journey. It's a small part. And I I think that we both agreed from the beginning that, you know, we were gonna make that a known quantity for Carter, that he was never gonna feel like he couldn't do something because of his diabetes.
Diabetes sucks — the family joke36:45
Mhmm. He was never going to see us sad about his diabetes. Our running joke at home when we have a bad day is we say diabetes sucks. Our five year old said it in somebody else's car, and, her friend was like, what does sucks mean? And the mom was just, like, was like, dying.
Kelly even knows that diabetes sucks.
Is is
it working, the plan?
Yes. I will the story that I always share that was relatively recent is our our son is a very busy eight year old boy who I like, I'll be honest. He he's very involved in his management. He's very smart. He understands carbs.
He understands correction. We let him do a lot on his pump, but we also don't hold him to a ton of responsibility because we don't want him to have diabetic burnout either. So we want him to be educated and aware, but we also don't want him to feel burdened at this point because he is so young. I was sharing with him the Elodon study, and I just said to him, hey, bud. Like, how cool is this that, like, they have come up with this, you know, trial where 12 people have been cured, 12 adults have been cured of type one?
I mean, I know it's, like, really far away from being something that, you know, we would ever be able to access, but isn't that just, like, really inspiring? And he said to me, mom, even if there was a cure for diabetes that I could get, I'd rather give it to someone else who hasn't already been living with it for a long time because I'm already pretty good at it. So I got this.
What the hell
is going on
over there? Is there a religion? Did you not mention a religion or something going on? Why are you people so nice? I don't understand what's happening.
Explain.
I used to have the
kids baby. I'm like, I imagine he's running, like, a SaaS company online or something. What what's what's going on?
I mean, we are we are religious. We go to church every week, and, you know, that's part of our life has been passed down from our parents from generation to generation. But I don't know how to explain that story for his mind is usually focused on which Minecraft world am I in right
now Yeah.
And which Pokemon am I gonna be.
I I mean, like, in a in a all or none situation, that's lovely. I I would like him to be going, hey. What if I could have it end the other kid that I was talking about? Like, is there For sure. Can we all get can we all get involved?
Well, that is lovely. I mean, what a nice what a nice story. Like, jeez. You must tell that everywhere, Michelle.
Would I, like I'm getting teary eyed just thinking of him saying it. And if if you knew Carter, you know that he can be, like, crazy and all over the place, and he's not overly emotional, but he definitely is a deep thinker. Yeah. So for him to really process that and verbalize that out loud as an eight year old boy, just really, you know, quite incredible with a disease that's, like, really hard to live with and definitely makes his day different than his peers. And, you know, he definitely has moments where he's embarrassed by it or he feels, like he doesn't wanna talk about it.
So to hear him say that was was really like, okay. Maybe, yeah, maybe we're doing something right. Maybe.
Yeah. Listen. I would definitely definitely don't take credit for that. I mean, a 100.
Oh, he is my son.
Yeah. Yeah. Well, he's just really just taking after me is what's happening here. I I do a lot of selfless things myself. I don't wanna list them here, but I do have them written on a card if you'd like to read them.
Yeah. Just trying to model.
Yeah. Yeah. Yeah. That's I I yeah. That that's my new favorite word.
You have to model for them. I'm like, yeah. My dad modeled. He had a cigarette in his hand when he woke up in the morning.
Yeah. It's like, you
know what? We don't say what the model's supposed to be.
Yeah. Yeah. Yeah. People needed to be more specific when they were explaining it to my parents. Also, how do I not smoke?
That's ridiculous. Seriously. I mean, like but that's not there's I'm being serious for a second. Like, I don't like, I was around smoking constantly. I it would I would never, like, consider smoking.
And and and why why does sometimes kids go one way and sometimes they go the other way? Like, how come you know what I mean? How come Carter wasn't like, mom, is there a cure? I need a stick. I'm gonna beat all these other kids off that I need to get a little image.
Like, know, how come he didn't pivot the other way? You know?
I know.
That's really something.
What Carter said about a cure41:12
You know, he the day that he was diagnosed and him and I were in the hospital bed, I do remember him saying to me, mom, I really wish, you know, I really wish there there was a cure for diabetes. You know, the very first day, it was just him and I in that hospital bed. And I remember texting Don, and I remember being like, I'm just so angry. I just remember saying, like, I just wish I could take this away from him. You know, of course, just as soon as he fell asleep, being a puddle.
So to be here two years later, I just hope gives hope to other families who might be on initial diagnosis that it does get better.
Certainly. Yeah. No. There's no cure for diabetes, but there was a cure to get rid of those tissues in the in the hospital room because I don't know how you didn't cry in his face when he said that. Yeah.
That must have been difficult.
I yeah. There was a lot of there was a lot of silent, wiping away and putting it into my T shirt. And
Yeah. You know, I I I don't know that I've shared this enough. I don't remember how old Arden was. She was pretty young. And she was sitting up on the counter, and we were doing something about the diabetes.
And she was young enough that she said she she mentioned a friend's child who has pretty severe autism and and is is verbal, but struggles with a lot of things. You know? Like, it's enough that at her age, six, seven, eight years old, whenever she was back then, like, she was she was very aware of the child. You know? And she says, I'd rather have what he has than diabetes.
And I said, why? And she said, well, at least he's not gonna at least he can't die from that. And I thought, god. How does she even know that? You you know what I mean?
And and she was really young. And that's that's like that when you don't cry in that situation, you should get, like, a merit badge from the parenting society. Seriously? It should, like, appear in the it should appear in the sky above you, like and you should be able to reach up, touch it, and add it to your to your badge collection. You know what I mean?
Like, it's like a video game. Because when I didn't cry, I was like, oh my god. I really might be good at this, because it was absolutely horrifying.
Got it. Know, it's so tough. I think that's one of the hardest topics for Carter. We, we recently got a diabetic alert dog and, received a a donation from the Lions Club. So they had asked us to speak at a few different events just about diabetes to spread awareness.
It's one of their pillars of advocacy as well. And in the, you know, presentation that Don and I had made, we did, you know, talk a little bit about, I I forget exactly what the line was or how it was phrased, but there was something in there that, you know, there's you know, if the wrong type of care or not waking up to an alarm could mean, right, that our child could die, and Carter just lost it. I didn't even think about it. The first time that he heard us speak and we got in the car, he was sad, and he was crying. And I was like, I don't what what happened?
I thought this was, a nice family event.
Bruce was here.
What's the joke about where you slipped in that I could drop dead in my sleep. Thanks.
Right. Yeah. Yeah.
He was just the one second he actually listened,
he was he heard that.
Yes. I and I you know what? That might have been the analogy, Don. I think it was talking about how I had the first time I slept through an alarm post his diagnosis, and I was in a mess, with that thought. Right?
Like, if I slipped through an alarm and Don hadn't woken up, what could have happened? Right? This is the constant stress that a nondiabetic parent might not see or someone looking from the outside in doesn't realize the weight of what we carry. And Carter was like, I didn't like that you said that. That really hurt my feelings.
And
Wait. He was aware it could happen?
He so I that's where we were somewhat surprised is because we had talked to Carter about a medical coma and how, like, you do need to listen to your alarms. We've been pretty forthcoming with Carter about his needs and the importance of them, because he doesn't always listen to his alarms. I don't know if we ever had used the word die in front of him before. Mhmm. Or maybe we you know, because we hadn't specifically used that word, he didn't realize that, like, a medical coma means you could probably go get fixed and come out of that coma, everything would be fine.
Yeah. Yeah. I didn't have a lot of context for a medical coma, mom. Thanks.
Right. Or or maybe or yeah. Or
but I liked when you told it to the to the was it the lion? Almost like Kiwanis. To the lions. Yeah. With the grand pooh bah there, that's a Flintstones.
But with the Flintstones used to be a black and white cartoon, I just wanna say that's how old I am.
That's all I wanna say. So
I you know, there's a there was a story told in the podcast, like, years and years ago about this woman who's got three kids. One's older, like, 16, 17. Then there's a kid with type one that's around 10 and one slightly younger than that. And she had to run the youngest one to a sporting thing, and they had bolus the middle kid. And as she leaves, she says to the older one, hey.
Make sure he eats, you know, because he's had insulin, and the food's there. And then she gets back not long later, and he's, like, sitting on the floor at the door of the garage waiting for it just crying his eyes out because the older sibling said, hey. Eat that. I don't need you dying.
Oh.
And that was the first time that, contextually, the kid understood what could happen.
Yeah.
Yeah. And it and I know, it's not not that the older sibling, you know what I mean, wasn't trying to I I think it was just, like, flipping. And, you know
Right.
But that's how that kid found out that. Right. So I I so I like scary. I like the openness of it, the way you handled it. I think we were fairly open about it too at an appropriate I mean, Arlen was two.
Like, you know, you don't you don't need to burden you don't need to burden a three year old with it. No. No. But but at at a certain point, I I I don't know. It's I think kinda respectful for them to understand their situation.
You know?
Yeah. I mean, I always tell Carter, like, you have one body, and this is the body god gave you. So we have to take care of it, and that means listening to our alarms. You know, we don't wanna have big highs and big lows. So if we don't acknowledge those alarm, that's what could happen, and that can do damage that we might not see or feel in our body right now.
But when you're 30 or 40, you might have a different response. It was something that we could have prevented now if we don't do the right things. Mhmm. And, you know, obviously, that conversation triggered what would happen in a medical coma potentially. Because I do think that it's important that when appropriate, to your point, you know, they're educated.
So, like, when he is a teenager and I'm not in control of him or when he's not with me, that he still continues to take care of his body. So as he becomes an adult, becomes my age, that he doesn't have issues that impact, you know, other things that we could have prevented now.
I know how you feel. It's, are you ready for when he gets older? And is that happening yet, or is he still listening pretty well?
He does not really acknowledge his alarms when he's with us. It's it's tough. I think I don't know if it's because they go off as you know, they're always with him. They go off so often that he just doesn't hear them or if he's just so busy and fixated on what he does that or what he's doing. He doesn't want to acknowledge them.
He has become much more aware of a low and catching them whether his alarm is going or not. He's almost starting to get a little bit ahead of it. Like, the other day, we were leaving camp, and he was like, mom, I know my Dexcom doesn't say I'm low, but I I feel low.
Mhmm.
And he was right. So I think in that way, we're making gains. Unfortunately, he doesn't super care or feel a difference about being high. So we really that kinda is up to us to kinda say to him, alright. You need a correction, or we need to do the correction for him.
I think some of it for him is just kinda growing up and becoming more mature and aware of what he needs.
Waiting, alarms, and what comes with time49:27
Yeah. I mean, my opinion is that it just takes time.
Yeah. For sure.
So Mhmm. It's not a thing you can you can't rush, and you can't make somebody aware of something that their brain's not gonna doesn't, like, naturally want to be aware of. I don't know if those all if all those words are supposed to go together or not,
but it it is definitely
it is definitely how I feel about it. Like, you know, there's there's moments when it just starts to solidify for people. Yes. And, you know, and you can't you can't you can't beat them into submission on it. That it'll almost always go the wrong way when you try to do that.
So Yeah. Yeah.
I think what's worked for us is if we know he's low if the situation's right, you know, not in the middle of the night, we'll ask him, like, do you feel any different? Or if he if he shares a feeling and we check the blood sugar and it's something, then we try and connect it for him. But, yeah, the we just call him he's he's a gremlin when he gets high, if you know you know that movie reference.
I'd I'd be trying Can I tell you honestly? Never seen gremlins, but I completely understand the reference. Don't worry. You know what Yeah. You can't eat after midnight.
Whole thing. Doesn't Santa die in the chimney in that movie?
Oh, man. Now it's been wild.
I haven't even seen the movie Don I know more about than you. Go ahead.
Yes. Yes. But we both know what gremlins are. That's
the important part of the
story. Common ground there. So that's you know? But I guess it's just, you know, trying to now that he's he can start to connect with feelings, so just give him the opportunity to do it And, you know, ask him what he's comfortable with. Like, he's he's good giving himself insulin because that means he can eat.
So that's an easy one to teach. And he likes candy. So when he's low, he knows he gets gets a few treats a little bit of sugar. So, Brian, what what whatever parts, like, are more more relatable to him, we try and make sure we can make a connection.
Yeah. Yeah. How are
The hardest the hardest part for him, I would say oh, I'm sorry.
No. Go ahead.
The hardest part for him, I would say, is the having to wait. The wait five minutes, wait ten minutes to eat. And I think that's gonna come with maturity and time.
Well, that's not what the adults tell me. The adults tell me that that's never gonna come. So No. Yeah.
Same thing.
Yeah. The the adults that have type one for a long time say, they better make an algorithm that doesn't need me to pre bolus because that is what I've learned to believe from people is that no one thinks twenty minutes before they're hungry, I bet you I'm gonna be hungry in twenty minutes.
True.
Yeah. I and whatever happens after that, like, that kind of yeah. You can you can you can look at it a number of different ways. Right? Type ones don't probably have as much or any amylin.
Right? They're they have more hunger than some sometimes type ones have way more hunger than than they would if they didn't have diabetes. And, like, there's you know? Or how about, like, nobody thinks I'd like a handful of pretzels. I'll wait twenty minutes before I have one.
Like, it just Right. It's
just Fair enough.
It really does suck. But yeah. I mean, I I I don't know. I see Arden do it sometimes, other times not. Sometimes because she doesn't think to, sometimes because she's busy.
Mhmm. I know when she does, you know, her blood sugar barely goes up at all. And when she doesn't, it it goes up. So
Yeah. Mhmm.
And and but you're you're still in I I think I'm taking from our conversation for you. You're still in the part where you feel like you're gonna be able to guide this exactly where you want it to go. Do you feel that way, Michelle? Like, you can set him up to do the right things so that when he's older, he'll just do them? Like, have you opened yourself up to the possibility that it won't work out every time you
go? I think I'm aware of the fact that there's going to be a time where he may not want to do the things that he's supposed to do, and that will be something that we'll have to, you know, get through together as a family for sure. Yeah.
Don laughed because he's like, she's been keeping me doing what she wants me to do for
at least. Yeah. It works for everybody else.
I don't have any opinions that I'm aware of. So no. But see, I'm gonna tell you, like, from my experience. I I don't know that I felt like that directly. Like, not in a not in a controlling way, but in a way of, like, you know, I'll just explain it, and then that'll happen.
And then as you get older and you realize that's not how it works for everybody, and then you watch them get older and you realize that their structure of importance is not the same as yours. Right? They don't have number one on their list isn't the same as your number one. And then you go, oh, I'm either gonna fight with them about it, or I'm gonna just hope that, you know, you're gonna go back to that old parenting adage. Like, I hope that I taught them well enough that when the time comes, they'll do the right thing.
Yeah. Yeah. It's hard with medical.
Yeah. And we teenage we or even our oldest is not a teenager yet. So for you that have been through multiple teenagers, like, we there's gonna be rebellion. There'll be, you know, those types of things. So, yeah, I think to your point is diabetes, like the other other things in his life, you try and set the routines and the structure and educate them and just, yeah, hope that
Yeah.
Someone makes the right decision in those times.
Yeah. Yeah. Hopefully hopefully, the right things go on autopilot. I look. I mean, Arden's, you know, pretty much through college at this point.
She might you might go to grad school, but but I think we did pretty well. Like, I I looking back, you know, did Arden's a one c go up in college? Like, it did. It went from, like, the high fives into the mid sixes. But what what are we talking about?
You know what I mean? Like, she's a girl in college keeping a mid six. Like, I'm not arguing about that. It's awesome.
Right. That's amazing.
Yeah. Yeah. I'm that's fantastic. If I was standing next to her, you know, would I have shaved some off of it? Yeah.
But, honestly, probably just with prebolising and addressing high blood sugar faster. Probably the only two things she like and and by the I'm I'm pretty sure we could bring 2,000 maybe I have already 2,000 type ones through here and ask them the same thing. And I said, you know, if I said what would bring your a one c down, they'd say probably, you know, understanding my meals better and not looking at a high blood sugar for so long. So, yeah, you know, I it really is it.
And I do think that there's a balance between managing the disease and just like you're saying, being a college kid, being an eight year old boy, being, you know, a child. I think that, you know, our opinion is not that the control has to be so tight that it takes away from those things as long as they're healthy. Yeah. Right? Everyone's different, and I think that however everyone decides to manage this disease, I just give them a lot of credit for dealing with it and managing it the way that they feel is best.
But, I agree. I think that they just need to be able to be college kids' children as well. And then the diabetes is, you know, you're just doing your best in the phase that you're in.
Mhmm. Yeah. No. It's really is it. And every phase is gonna carry pretty much the same overall problems.
Just Right. They'll look differently because of the part of your life that you're in. You know? Or, you know, women say, like, a lot, oh, I had a baby, and then, you know, taking care of the baby was so much I didn't take as good care of myself. I've heard that with and without diabetes in somebody's life.
Sure.
Yeah. Or fathers, you know, or like, you know, I was trying to be invincible, blah blah blah. Then something happened. I realized, oh gosh. I need to be around for this.
This is all very, like, common stuff. Michelle, why are you such a we're not on videos. We can't see each other. But you are so good at communicating. Like, it it's gotta is it about your job?
You actually make an audible noise that lets me know you wanna speak, which makes me feel like I don't have to stretch out my thought because I know you're getting ready to jump in. Are you doing that on purpose?
I have no idea how I'm doing that.
Oh, you're just it's just a I can tell by your breath that you have a thought that you'd like to get out.
Wow.
Don, are you aware of this or no?
I don't we we do. It is a
little bit different being in
in a different room. I feel like we read each other pretty well in person. So I I don't know that I ever thought about it that way.
It's it's been happening for the last forty five minutes. She when I know that you have a formed idea and that I don't need to expound anymore, and you just you just you breathe in a little bit. I hear it every time, and I'm like, oh, I can stop talking now. She's gonna fill. And then you fill perfectly.
You jump right in. You could be on my podcast all the time is what I'm saying.
Oh, perfect. I'm a natural, so I had nothing to be nervous about.
I think you are maybe a natural at this, honestly. And Don's being Don's being, you know, extra careful because he doesn't wanna step on you or me, but he's I'm trying to decide if he's more worried about insulting me or you. I think you
The problem.
Don's Don's the humor to our pair, though, so we need him because he lightens the mood.
He's the humor?
Yeah. For sure.
Well, do kids play sports, Don?
We yeah. We we do a few different things. Carter is a baseball guy in Taekwondo. We've we've really exposed the kids any sports they wanna play. They've had the opportunity.
So we've tried soccer, lacrosse, flag football, baseball. I'm probably missing something.
Is anything sticking right now?
Yeah. You know, as as a former soccer player, unfortunately, my five year old is the only one that's willing to play soccer right now, so that hasn't stuck with the older two. Mhmm. Carter's played three seasons of baseball, so that's seemingly consistent. I don't know if he likes baseball or just hanging out in the dugout with do it you know, chewing gum and sunflower seeds and putting on the iBlack, but if he participates, you know, we'll take that.
Ava Ava's taken to flag football and lacrosse right now, the oldest one. So we're trying. I I'm trying to get him into golf as well so that, like, your son, they'll wanna take me someday. Yeah. So that's the goal.
That's a lifelong goal.
Yeah. I I'm gonna have to learn how to play. He keeps telling me. He's like, you'll play. And I'm like, I don't feel like I have the ability to be repetitious with it.
Like and and I'm so afraid that I'll hit one good, and then the next one, someone will die. You know? Like, I've
Well, you take that one good, and you gotta roll with it. I'm just
gonna have be the kind of person that if I hit one really good, I'd go, alright. Well, we're done now. I I mean, I've done it.
Let's just Enough.
We'll just tell people about this one.
And so
or I'll remember this one when the time comes. Well, it's nice. Yeah. You're looking for stuff to do together. Now is the blood sugar manageable during these events, and and what are you guys using actually to manage?
Omnipod to Tandem and back59:53
Yeah. Well, it depends on the day. Typically, you know, baseball, at least right now, it's rec baseball, so you can put yourself in pretty close proximity to him for the most part wherever he is. Yeah. But he'll, you know, he'll get a pack of gum, and he'll he'll chew the entire pack, and that'll cause him to go high or you know, the the so it can get a little bit complicated there.
But we use we've got the Dexcom g seven, and then we're on the Omnipod right now, Omnipod five. That's what he started with. We actually switched over to the tandem for a little bit and then went back to the Omnipod relatively recently.
What can I ask both sides of that? Why just switch? Why just switch back?
I this is where I'll start again, and then I'll let Michelle fill in the blanks. The we we we were hitting the Omnipod. We get in the high seventies, you know, in range per week, but it was a lot a lot of us inter interacting with it and some overcorrections and things like that. So we we just heard about the tandem algorithm that it might be a little bit more aggressive in, you know, the auto correction fact or the auto correction that it can do as part of its algorithm that might help reduce some of the highs that we were seeing. We had some friends that were on it that said they loved it for their kid.
So we're like, yeah, if it's gonna help us do it, then let let's give it a shot. So we did that for a couple of months, three months, something like that, and we just were not getting anywhere near the in range times that we were with the Omnipod. And and also with summer here, you know, we were a lot of swimming, so he'd have to take you know, I guess you can go in the pool with it, but he'd take it out. He'd forget to put it back in. He'd forget where he put it.
We just had some different things like that, so it caused him to go high. So, the Omnipod five just seemed to be one more effective beforehand and then kinda fit our lifestyle better right now. Okay. You know, with potential to go back to the tandem in the fall if if we feel like, you know, we're that might give us something different.
Well, I would let let me, I'll speak, I think, hopefully, thoughtfully on all fronts. So first of all, Omnipod five has the new 100 target, which you should Yep. Try if you're not.
And Yeah. We need the new pods for it. We're getting them. They're prescribed for us.
And then I in defense of the tandem switch that didn't go well, I the settings from an your Omnipod are not necessarily gonna transfer to your tandem vice versa. And same with, you know, MiniMed or, you know, any of the other twist, any of these. By the way, those are all sponsors. Please look in the show notes and click on them if you wanna learn more. Seriously.
Done. We got we gotta keep the lights on here. You know what mean?
We should. We should. They're all they're all fantastic, and definitely look at the one that works for you.
Yeah. Great sponsors. Go check them out. Mhmm. Not the point.
The point is is that settings are not one to one from these systems, and I don't know that people understand that. I don't I don't know that, you know, that people aren't just, like, taking their MDI settings, going to Omnipod five, and going, don't understand why this doesn't work. I'll go try a different one. It didn't work here either. Blah blah blah.
Like Mhmm. Especially with, like, a growing kid. You know what I mean? Like, an extra five pounds.
Mhmm.
The the season changing. The I don't know. I I was playing soccer. Now I'm not. I, you know, I was sitting around playing Minecraft.
Now I'm playing soccer. Like, all these things have such huge impacts. I don't hear people talk about this stuff when they talk about this. They just the thing
No. That
doesn't seem to work. Yeah. They talk about
That's that's a great point. The rep we worked with at Tandem was was really great in trying to explain that and meet with us and change you know, look at the data over a couple weeks and change you know, tweak this factor or that factor. So we we did try that a couple of times. It just didn't seem to be Yeah.
You can turn the wrong knob, and it just it just takes you in the wrong further in the wrong direction. I know. It's tough. It really is. Set settings settings.
I mean, it's where the that's why I talk about it so much on podcasts. You gotta get your settings right. You gotta understand the impacts of your food. You know what I mean? It's timing and amount.
That's kind of it, really. You know? Is there fat in it? Nobody's gonna tell you about that. Nope.
Hardly at all. And then that'll mess everything up, and you'll run around going, I don't know why this isn't working. The thing the thing is broken. Yeah.
Right.
Well, listen. It's good for it's good for business on my side. There's four of them. Go try them all. I don't care.
It's good
to have options. Just use
the link. Don, just use
the link. You can try every one of them. I couldn't possibly I
couldn't possibly care less if you can't afford to retire one day. Okay? My god. It is expensive. Are you lucky?
Does your insurance handle most of this stuff for you?
We were fortunate that our insurance had the tandem come through prescription, which allowed us to not get involved in a contract, which my understanding is if you go through medical, you do get locked into a, like, certain year contract on the Tandem. So because of that, we were able to easily go back and forth between the Tandem and the Omnipod.
Yeah. That's awesome.
Yeah. We did have a little bit of an issue trying to get supplies and and things in and out, but I also just think, you know, we, you know, we got so comfortable controlling what we could control on the Omnipod. It was almost, like, hard to change ourselves to the the settings on the Tandem. So I I kept saying Tandem rep. I feel like it's more like user error because we're just so used to Don and I being in so much control on the Omnipod.
And so it's it is just a very different approach to management. So I think that's just wouldn't be an important thing if you're thinking about switching. It's just different, really a different approach altogether.
Well, it it's at the very least, it's a diff it's different than what you were doing.
Correct. Yeah. Totally.
And then Correct. The one needs or wants something that the other
They're just different. Yeah.
No. It's it's a it's it's not it's not an insignificant point you're making at all. Alright. So if I if if Carter was here and I asked him what how's it going, you think he'd say going great? And if I dug deeper, do you think he'd have context for that, or does he just think, like, you know, it all you know what I mean?
Like, what's his understanding of of how this is working?
Knowing Carter, he'd be like, good. Don't know how much deeper he would get for you. Mhmm.
That's exactly the word I was thinking. He's good. I
think I truly think that at this point, Carter just recognizes that diabetes is a part of his life, and he knows that there are things that he needs to do. I don't think he will ever remember a life before diabetes, which I suppose is a blessing in in a lot of ways. And I don't know if he's mature enough yet to realize the significance of some of his choices or what could be or the long term potentials of the disease. So I would say he'd right now just tell you that, you know, life is good. He's at camp with his friends.
He's able to do the things that he wants to do, and so life is good.
No. That that's encouraging, actually. If if that's I I don't think he, like you said, is gonna have a deeper thought about it at the moment. And if he feels like things are going well, then they are going well.
Yeah. Yeah. I think one thing that was humbling for us was when we did want him to go to summer camp, and Endo told us that, like, summer camps don't have to take him. If they don't have a nurse, they can turn us away. And I remember looking at Don and being like, what?
Camps, playdates, and the word fair1:07:39
Like, he can be excluded from things because he's a diabetic? Like, how how is this fair? And then I'm like, my line is, like, fair shouldn't even be a word in our vocabulary. And we've been really fortunate that we found a camp that even though they don't have a nurse, that even though it's not always easy, they've worked with us really well to keep him there and let him be present and be with all of his friends and be an eight year old boy, which is great. But that was a a tough pill to swallow when we heard that from Endo.
Yeah. Yeah. I mean, it's not the only place to I mean, there's just some places it's gonna be because they don't want the responsibility. Some places it's gonna be because they legally don't have to, so it's easier for them. There's you know, there'll be a lot of different things.
And, you know, along the way, they'll either sometimes he just won't enter I mean, you know, the military is an example. He can't he can't join the military. And if it's not a thing he wants to do, then he's never gonna he'll never know. You know? Right.
If he's been running around telling you he wants to fly, you know, Air Force planes, then he's in for a rude awakening. Right. It's it it but that part about them not having to take them, did it just feel I mean, can you put more context to how it made you feel? Like, besides obviously just shocked, like, did you
Yeah. I I think I just you know, as any parent would want, you don't want barriers for your child. You wanna remove all the barriers that you can, and diabetes is not a barrier that we can remove. I just the thought of him just being left out or being unable to do something that he would wanna do with his friends because of the disease when we sit here and say, you know, just because you're a diabetic doesn't mean you can't do anything. I I think I just as a my my heart hurt.
I understood the logistics of it. I understand the medical necessity of having a nurse and the responsibility that comes with it. For a while, I felt kind of a similar heaviness over him wanting to go on a play date at someone else's house Mhmm. And not really knowing how to handle that, you know, without me being there or Don being there and him wanting to be like, how come I can't just go to a friend's house like Yeah.
You know,
my big sister is without you, and why can't you guys just leave? Right? Like, it's not as simple. So I think I think it was just a reality that his life will be different even even though I I don't want it to be.
Tell me why it's not that simple.
I I I I think at the first point when he was diagnosed, he was not doing any of the management himself.
Mhmm.
And I felt like asking another parent to be responsible for that, and maybe that was my own fear, was too big of an ask. Right? Like, here, have my six year old son. And by the way, he's a type one diabetic, and you need to do all these things, and I have to be able to text you or call you constantly. And you know?
Well, you let their kid come over, and their kid's a little jerk. Isn't it the same thing?
You know? I don't know. A little bit different. A little spicy attitude compared to, like, a medical emergency.
I mean, I don't know. Like, some of those kids are are horrible.
We have been very blessed. We have really great friends now who let Carter go over there all the time, and they keep they keep a, you know, a monitor to test his blood sugar there. And they have all of his needs, his, you know, his tabs there for glucose, and he comes and goes from his house to that how our house to that house like it's his own. So we've made it through that phase, luckily, and he can do more himself. So, luckily, that was a short lived phase for us.
But
A lot coming, Michelle.
Pace I
know. Pace yourself. Okay?
I know. I don't even wanna hear the word sleepover. Don't even say it.
Ah, it's easy. Don't worry. Fine. The thing will beep. Somebody will wake up.
If they don't, you're not gonna sleep anyway. You could watch it. And It's true. This is true. You just We
got our sugar pixels set up. We're all
Yeah. Hey. Customtype1.com/juicebox. And That's what saying. I make, like, a dollar every time you buy a a sugar pixel.
I don't even
I first, let me be honest. I don't know how much I make. And I I just know that it's not it's not a grand amount of money. But if you buy through my link, I do get something. And but those new SugarPixels are awesome.
They are really cool. We have a bunch of the older version, and I wish we didn't have as many so I could logistically convince myself to buy a new one because they look really awesome.
What if a couple of them broke?
If a couple of them broke, I should tell Carter.
Easy. Easy. I
was like, that's did you hear educators earlier? Did you hear when I
said We were listen. When we're waiting to to start the call, I'm getting links Amazon links sent to me, you know, with the free time that we had. So
Well, I I I guess I I I would tell you about the to kinda go back to the the overnight stuff a little bit. You can prep people pretty well. Like, I think if you strip out your fear from it, you'll you'll realize it's there's not that much to it. Right? Like, somebody might have to wake up and give them a juice or something like that once or whatever.
But, like, they can deal with it. And if they're really good friends and good neighbors, then they're just not gonna sleep well at night, and that that'll be okay. And if they do exclude them because of that, I say better to know now than later.
That's true.
You know what I mean? Like, if they're gonna be if they're gonna be like that, I'd rather know that's how they are, I guess.
Yeah.
Because we ran into one. Good perspective. I can picture her in my in my head. You know? Wouldn't invite Arden to anything.
Would ask her to leave. Like, she could come over for a sleepover, but when the kids went to bed, Arden had to go. Like, she just didn't wanna be involved. Now I never asked her why. Maybe I don't know.
Maybe maybe she was scared. You know, you you just assume they don't wanna help, that they're, you know, being lazy or selfish or something, but that may be not the case. Maybe she was just nervous. She didn't wanna hurt her. You know?
I don't know. Then I've had other people just jump right in. I I I honestly I picked Arden up from a sleepover one time. This guy, he looked cracked out of his head when I got there. I'm like, you alright, man?
You just didn't sleep. Don't know how you sleep with this. And I was like, what? But he took it really seriously. And and once he kind of ran the numbers in his head about the stuff I told him, he he just said to himself, like, it's just one night.
I'm not gonna go to sleep. That little kid's here. And he took awesome care of Art. You know? So
That's awesome. Yeah.
You never know who it's gonna be. So I don't know. Get out there and find out. Also, somebody's gonna hurt his feelings. Toughen him up before a girl breaks
his
heart 12 times. You know what mean? Yeah.
I'm trying to toughen him up.
Yeah. Michelle, forget this diabetes thing. What about when some girl's mean to him? What are you gonna do to her?
Oh, man. I don't wanna go there yet.
Some little girl smiles at him and then stops smiling at him, his little heart melts.
I guess the real question is what impact that'll have on his blood sugar.
Know? That's Gonna make it go
up. Yeah.
Yeah. Yeah. For sure. Yeah.
He's gonna he's gonna definitely oh my gosh. Wait till the dating happens. You're in for so many problem. I mean, joy. There's so much joy coming your way, guys.
Something to look forward to.
Oh, you're gonna have a great time. And then when it's over, you get old really fast. It's awesome. And then the panic of not being able to afford to retire hits you, and then it's just a sprint to the end. So Oh,
it's all positive.
It's all just it's all just really rainbows and and and and you know
All good things. All good things.
Yeah. You know, you there's never a bad moment, actually. You're in the best time right now, my opinion. I love I I I'm I I like this time a lot. Like, there's something to be said for
We are.
You know what I mean? Or, like, the feeling that you're still building and all the possibility exists and everything. I like this older part too where you're more friendly with them and it's easier, that kind of stuff. But, you know, the the time ticking kinda puts a damper on this part a little bit.
Yeah. Gotcha.
Yeah. I don't wanna be a bummer, but, like, finite, etcetera, and so on. And Yeah. Yeah. But this part that you guys are in, like, really try to I guess my point is is, like, do your best to enjoy it because it is pretty awesome, actually.
Yeah. You.
I appreciate that.
No. Of course. Do we get the other kids tested? Are we worried?
We we did the
We did. A
little while ago.
Go ahead.
I was gonna we we had the the one test where they can check for the markers. I forget exactly what they call that. You know more about it, me. But we they were they were negative at the time. But it's been, what, Michelle, probably been a year.
So we'll we're trying to keep in tune with it.
I mean, you got good news. I wouldn't look at you.
Yeah. We did it right after
Carter's. Yeah.
I'm not yeah. Fair enough.
Sounds like I don't need to know. Where is that where you're at on that? Don, do you figure you know what it looks like? If it happens, you'll see it?
Yeah. I think so. I mean, I would would there be benefits of maybe having an awareness that it might happen, I guess. But, like, we've now been through it. You know, I hopefully, we get to a little bit early this time.
Yeah. And we also have all the tools to check the blood sugar whenever we want. So if we get concerned, we can we can jump right to that and not have to wait to go to the doctor.
Yeah. If you if you do you think there'd be consensus between the two of you if another child had had an antibody and someone said to you, we can give them TZLD or something like that. Would there be consensus between the two of you about what would be the right thing to do there? Have ever thought about that? Do you know what that is?
That's yeah. That's the one that I can I
think so?
Right? Yeah. Michelle's like,
I definitely think he'd agree with me. But go ahead. Yeah. Yeah. You you would try it, Michelle?
Whatever Michelle says, we would do
it. Yeah. No.
I I think we
You broke up, Michelle. I'm sorry. I think Don's
We talked about it with Eva because our oldest daughter was the only oh, go ahead, Don.
Oh, no. I'm not just trying to speak. Is your connection okay?
Yeah. I think our connection's messed
up. Michelle.
That's it, Don. We finally finally alone. Finally quiet, Don. You understand?
Well You
you know, I'm just teasing. She's lovely.
She was joking. No. No. It's all good. No.
We had talked about that. I I think we would have to, I guess, find out a little bit more about it. We know it's an option. We would we would probably say yes to it, but I guess we would, you know, in that situation, do a little bit more homework, make sure no we're getting into.
Yeah. No. I mean, I would I'd feel the same way. You know, it depends. Like, sometimes they they talk about, like, well, it could push it off for another year or maybe more.
We don't know. Mhmm. But I always wonder, like, what else what else do they think that med does that they haven't been able to prove yet. I'm I'm interested in where that goes, know Yeah. Over time.
Well, we definitely lost Michelle. I was gonna wrap up, and now she's just gone. Michelle, you can't hear us. She's there.
Also messaged that she I I think we have to get the kids from camp. I think we've come up on our
Well, Don, you say goodbye.
Our
time. And we'll just I'll pretend to be Michelle. I'll be like, thank oh, there she is. Hold on. I was gonna pretend to be you, Michelle, and say thank you.
Are you back? She's not back.
No. She faked us out.
She's in and out.
She's out.
Okay.
Well, I can I can say thank you very much on behalf of both Michelle and I? We really appreciate your time this morning and and chatting with us.
I I Can
you hear me?
Now you're back. Michelle, say goodbye before you disappear.
Sally. Am I back?
Yeah. What's yeah. Oh, Don, this must feel so empowering to you.
Well, I she was nervous before. Now she's gonna be embarrassed. No. She's you
know, this afternoon. Embarrassed. It's fine, you guys. You have poor what do
you have? You so much. We really appreciate your time.
Michelle, thank you, and get off T Mobile. Okay? I don't know what you're doing. Alright. It.
In the car.
Go get your kids. I'll talk to you later. Thank you so much. Alright.
Thank you so much, Scott. Really appreciate you.
Take care. Alright. Take care. Bye.
Bye.
To learn more and see if you might be able to get Twist from the pharmacy and try it for free, head to visit.twist.com/juicebox. That's visit.twist.com/juicebox, or give them a call at 18774. That's +1 (877) 489-4478, and tell them Scott sent you. Twist requires a prescription and is indicated for people with type one diabetes six and older. Arden has been getting her diabetes supplies from US Med for years.
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