#394 Perspective Ceiling

Kari is Amanda's mom and Amanda has type 1 diabetes, Down Syndrome and Hypothyroidism. 

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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
Hello friends, welcome to Episode 394 of the Juicebox Podcast on today's show, car is here, and khari has wisdom beyond her years. More on that in just a second. This episode of The Juicebox Podcast is sponsored by Omni pod, the tubeless insulin pump, you can find out more about the Omni pod and receive a free, no obligation demo of the pump in your home by going to my omnipod.com Ford slash juice box. Today's show is also sponsored by the dexcom g six continuous glucose monitor. dexcom.com Ford slash juice box is where you're going to learn more about the device that we use here in our home to make great decisions about insulin.

Unknown Speaker 1:01
It's early here, where are you at? Seattle. Oh my god,

Unknown Speaker 1:05
it's six o'clock in the morning. Or?

Unknown Speaker 1:07
It is because I wasn't expecting like everybody in my house to be home with the whole COVID thing. So I thought I'm just gonna be great. My husband would be at work, you know? Yeah.

Scott Benner 1:19
whispering in a corner, right?

Unknown Speaker 1:21
Exactly. Trying to be quiet and wake nobody up. But

Scott Benner 1:24
I'm actually doing the same thing. It's nine o'clock here. So my kids have gone to a nocturnal existence.

Unknown Speaker 1:34
I know. Well, good for them.

Scott Benner 1:38
Okay, you're gonna meet khari in just a second. But here's a little bit about her. She's the mom of a child who has type one diabetes. A daughter, Amanda, and Amanda also has Down syndrome. And hypothyroidism. You're gonna learn a lot in this episode. Please remember, while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical, or otherwise, please always consult a physician before making changes to your health care plan, or becoming bold within.

Hey, are you looking for a great type one doctor? Or do you have one to share with other people? Check out my web page juicebox Doctor podcast.com. It's an ever growing and wonderful list of practitioners that have been sent in by the listeners. And if you're looking for those diabetes pro tip episodes, they begin at Episode 210 in the podcast, or you can check them out at diabetes pro tip.com. Last thing, if you're listening in an app right now, please remember to subscribe. Just push that button.

Unknown Speaker 2:51
My name is Chari. I've been married for almost 25 years. I've got a son that is 20. And I've got a daughter who is 18, who is a type one diabetic. And was also born with Down syndrome.

Scott Benner 3:07
You've been married for I've been I think I hold on a second. What year were you married?

Unknown Speaker 3:12

95. Huh? You have me by a year.

Scott Benner 3:15
Oh, well done. Thank you. Oh, you rolled right into that second kid? We waited?

Unknown Speaker 3:23
Yes, we did roll into that second kid. And we were thinking about maybe having three but yeah, the two kind of stopped us.

Scott Benner 3:30
Yeah, we stopped that we very similar situation. But may I be bold and ask? The Down syndrome stopped you?

Unknown Speaker 3:38
Well, you know, it kind of did but only because, you know, I? By the time? Well, I told my husband, we can have three I'm good with three, but I need her to be walking because I didn't want to have the toddler and the carrier. And a newborn, you know. And so by she started walking around three and by three, you know the five year old was it nappy, man. I know we just have a way to start over. Are we good?

Scott Benner 4:11
Hey, listen, I had a very similar conversation with my wife. Our children are almost five years apart because I said that one needs to be heading to kindergarten. Like I said, I said it'll be cool if he's around for like the first year when the baby's you know, sort of like a you know, like a big potato like then it's easy, you know that? I would I'd like him to be able to connect with the next child, whatever it ends up being I was like, but as soon as that kid starts moving around, it becomes more trouble. I'd like the other one to be in school if that's okay. That's how we literally one of two things we've planned in the entire time we've been together was exact exactly when to have Arden right for that for that very reason because of my concern that it would be difficult as I was to stay at home like my wife would have been like here take it It's fine. I I'm 48 and last night she's like, we should have another baby. She wasn't being serious. She saw a baby on television. And I was like she how freaking easy. She can say that. Because what she would do is like, you know, hand it to me and then be exactly I got to that baby us for a while you're watching TV like nine months. No, no, it's not what? No one. So, your son? Well, I guess at the moment, everyone's home, right?

Unknown Speaker 5:27
I agree. Toby. I my son is a sophomore in college. And then Amanda, who's 18 year old is a senior in high school. Okay,

Scott Benner 5:35
so my sophomore in college, I walked into second night to last night. And he's got this Um, I don't know how to describe it. It's sort of like a footlocker in his bedroom. But it has one of those raised up top. So you ever see those coffee tables where you can raise the top towards the sofa? Yeah, and I'm saying he's got a, like a Foot Locker in his bedroom like that. Right? And so it's next to his bed. It's been drugged across the room, and it's been lifted up to go along the side of the bed and there are drinks on it and snacks. And he's asking me 20 years old. How do I get Disney plus on this TV?

Unknown Speaker 6:10
Yeah, I hear you. I just

Scott Benner 6:12
started laughing at him. And he's like, What? I'm like, nothing. You just you look comfortable. That's all. I just what I was thinking was I haven't been that comfortable in 30 years, but that's fine.

Unknown Speaker 6:22
No, I feel like I've been doing this cooking. Since he's walked in the

Scott Benner 6:27
door and I present and then and he wants to be on his own schedule with a quick I was like, This isn't school man. This isn't a mess. I was like, wait, you can't roll up it on me at one a one in the afternoon and be like, What's for breakfast? Because breakfast was five hours ago. But I actually at the end of our conversation told him. I said I'm really sorry about you know, you missing out on school this year. And you know, his baseball season got canceled. And everything. But we've been going out to this, you know, piece of grass where nobody goes around here and throwing and hitting. And I mean, if I'm being honest, from my perspective, it's been very nice. So yeah, I'm sure. I'm sure he's like, I can't believe I have to play baseball with this old man. But I like it. Anyway, okay, so you and your daughter's finishing up high school from home too. Is that a bummer?

Unknown Speaker 7:13
Well, you know, we have been homeschooling for about seven years. So this is no different for her. Yeah, it was starting in about Middle School. And special ed department and I didn't hit it off. So

Unknown Speaker 7:25
gotcha.

Unknown Speaker 7:26
I had pulled her. Yeah, we had pulled her from school in about sixth grade. This is Yeah, this is normal for her. She's just thrilled that her brother's home. And

Scott Benner 7:35
yeah, I see that.

Unknown Speaker 7:36
You know, it's all good for her. It's Art inspro with

Scott Benner 7:40
Arden's on spring break, which is amazing that they gave them spring break, I pulled my wife aside, I was like, they never would have done this for us. If this happened, like 30 years ago, they would have been like spring break, you're already home, shut up and keep working. But Oh, no. But she's been working on her clothes. She likes to design clothing. So she's been doing that. But But I have one question, and then I'm gonna jump backwards for from it. How old was your daughter when she was diagnosed with type one?

Unknown Speaker 8:07
She had just turned 17. So we've only been in it a little over a year.

Scott Benner 8:12
Okay. Is there any sign of Type One Diabetes through your family?

Unknown Speaker 8:18
There is not we have some type twos. But no, no type ones. I did not realize. So my daughter was born with hypo thyroidism. Okay, which now I know is an autoimmune issue. And so I guess autoimmune issues tend to be more prevalent in people with Down syndrome. Okay. But does not necessarily mean type one. So I've only met a handful of people online that have Down syndrome and type one. So it's not just super prevalent. But people with don't intend to have more autoimmune issues in general

Scott Benner 8:58
care. You know, you've been screwed when you're in a an online chat group of six other people for health reasons, just like

Unknown Speaker 9:04
exactly like, well, this is fun. Guys.

Unknown Speaker 9:11
I know nobody get bored.

Scott Benner 9:12
Everybody has to keep coming. Yes, I want to go backwards and try to understand because your email to me, it struck it struck a chord when I read it. Because, you know, listen, you've listened to the podcast long enough, you know, I'm just gonna say what I'm thinking, right? Like, we're not gonna dance around, and I'm assuming you wouldn't be here if that was the case. The one says, Well, listen, back when malls were a thing and we were allowed to go outside with other people. I would forever see an adult with down syndrome, whose parent is with them and their parent. You can't even decide how old they are. Like you look at them and I think that lady's 110 do you know and and I always I always remark to my wife and avert it. And I think of this as a very loving thing. I always think that woman just probably feels like she can't die. Did you know? Right, right, like, like, I like I have to stay here as long as I possibly can. And I want to know what that's like, like, I really want to understand before we get to the diabetes, what it's like for you is as, as her mother and what it's been, you know, I want to know what it was like in the beginning in the earlier years, and how it's progressed through time and what your responsibility actually looks like. Do you think you can talk about that?

Unknown Speaker 10:35
Yeah.

Unknown Speaker 10:37
I would agree with you, we do feel a tremendous amount of responsibility in the world is is really scary place for somebody that's that vulnerable. So you kind of feel like you have to be their sounding board and there. I mean, she's amazing. My daughter is funny and adorable. And we joke that she could run for mayor because she greets everybody, you know, how are you? How are you? And you know, but she doesn't have a whole lot of decision making skills that are great. So you know, in a world that you don't even want to send her out the door by herself. It's hard. And it's hard to think about the future where somebody could potentially, you know, absolutely take advantage of her.

Scott Benner 11:33
So in like real terms, if she came up to me and was friendly, and I had designs on doing something wrong to her, I could be friendly back to her and then just suggest that she and I go somewhere. And

Unknown Speaker 11:46
Oh, absolutely. And she'd be like, sweet. Yeah. Yeah, let's do it. Yeah, I gotcha. Yeah. Yeah. I so that's, you know, and it's just, it's scary.

Scott Benner 11:59
As a parent, no, I, I listen, I have a son who doesn't have Down syndrome. And I sent him out the door and felt almost exactly the same way. Except my feelings were reasonably baseless. I was just worried. I mean, like, I wasn't right. Yeah. There wasn't a real thing. I was concerned about you, you have a real a real thing. So tell me what that looks like. in public, are you just, you're with her constantly? I would imagine

Unknown Speaker 12:25
constantly. Yes. Yeah.

Scott Benner 12:28
And is that at any point? Is it something you've like giving yourself over to? Because I'm assuming there's a fair amount of your life that you've? You know, usually we talk about backburner in our lives while we're while we're being parents. But there's no backburner for you? Did you just give it away? How do you how do you handle it in your mind?

Unknown Speaker 12:51
Yeah, in my mind, that is exactly what you do. Because what is the option? I mean, I can't sit around. And I mean, I will tell you that when my son left for college, that was kind of a it was like a reminder, almost a slap in the face, you know, like, Oh, this is what it could have been like for her. And, you know, like, my husband and I actually liked each other. We wouldn't mind being empty nesters at some point, you know? And it was just kind of like, Oh, no, this is no, remember, this is reality. Nope, she's gonna be here and words. Three of us.

Scott Benner 13:28
Though, I'm not talking about intellectually, just raise your level of responsibility. What age would most of us who have been kids relate to your day to day activities? Were there like, is it? Is she you know what I mean? Like, is it like being with a 10 year old like that? That's what I'm wondering.

Unknown Speaker 13:51
Yeah, no, she can, um, well, I say she's a really odd mix of an 18 year old. I mean, she absolutely has an attitude and would like to be, you know, on her own and do things independently. You know, like, I do still kind of help her shower, so she can get in, she can turn the water on, but just motor wise, she doesn't do a great job washing her hair. I mean, I still have to prepare food for her. She can't. I mean, she could make like a peanut butter and jelly sandwich with a little bit of assistance. But she's super petite. And so like, she can't even reach our microwave. I wouldn't trust her with the microwave anyway. But like, she can feed herself and she could toilet herself and, you know, so it's not I wouldn't say it's hands on the whole time. You know, I don't even know what age to put her up. But I'd see. Yeah, I'd see. Probably 10 ish.

Scott Benner 14:48
Gotcha. And then the she, what's her level of under, like self awareness about her situation.

Unknown Speaker 14:58
Zero sleeping. I mean, she knows she's amazing. We've told her She's amazing. She has no idea she has Down syndrome. Right? I mean, if you said, you know, do you have Down syndrome? If she looked at you like, What are you talking about? You know,

Scott Benner 15:13
and it's not keeping it from her. She just doesn't see herself?

Unknown Speaker 15:16
No, she's just No, not at all.

Scott Benner 15:18
It's um, it's, it's nice, actually, because the more people I talked to, the more I feel that from people, I say this a lot, but I go back to. I was interviewing Sam fold the first time and I asked him if he was ever concerned that his kids were going to get it. And he had a response that was so similar to what you just said. Like, why would it matter if they got it? I have it. I'm a person. You know? You mean? Like, it's just a very? I don't know. It is what he said. That moment always stuck with me. So you said she's very much like an 18 year old.

Unknown Speaker 15:55
Boy, boys.

Unknown Speaker 15:58
Oh, for sure. Gotcha.

Unknown Speaker 15:59
Yeah. Justin Bieber. Shawn Mendez.

Unknown Speaker 16:04
Yeah, I see.

Scott Benner 16:05
I see. Is there Yeah. Yeah. Does she do any social stuff with other kids with down syndrome?

Unknown Speaker 16:13
We have an amazing support network here.

Unknown Speaker 16:18
Yes, that we have. I mean, we have a group that just does social things. And then she's in a music class. And she has played baseball for the last. I don't even know how many years probably 12. She plays soccer. swimming lessons, you name it. Yeah, she's super social. And we have a great group of kids. But, you know, why would Paul like kind of her core friend group?

Scott Benner 16:45
Okay. Now, so now I'm being serious is there? Is there a thought ever that one of those boys is going to ask your daughter on a date? Or she's gonna ask someone on a date? And they're gonna say I want to get married? And is that something you think about?

Unknown Speaker 17:03
It is somewhat something we think about, but I don't the reality of it, I think would be very tricky. Well, especially now with the type one. Yeah, I mean, before the type one, I would have said, you know, very easily I kind of a group home situation, obviously, with people we knew, you know, that sort of thing. But

Unknown Speaker 17:27
now, it's a little bit trickier. I would do that piece. Right.

Scott Benner 17:32
Right. I'm just, by the way i, is it proper to always say Down syndrome, or is there a shortened version you use? Like, what's the, what's the word? No, it's just downs.

Unknown Speaker 17:45
though. No, just a DS, maybe. So

Scott Benner 17:51
I'm thinking of like, every time I refer to our nose like Arden, come here, we have to change your pump because of your type one diabetes as big as a lot. Are we always saying that?

Unknown Speaker 18:01
And we never say Down syndrome. So it's not a thing for us. So.

Scott Benner 18:05
Right, and but when you're discussing it outside of like, with me, I'm a lay person for this, right? Yeah. I was just like, I kept thinking like, any second Kerry's gonna say like, DS, man, it's DS or something? I don't know. But anyway, okay. So being married in a group home situation, meaning someone taking care of the bigger things, like you just discussed about washing or meal prep. You think she could have been to but but the diabetes piece, you know, it's so funny, you have this same concern every other parent, kid with Type One Diabetes, as

Unknown Speaker 18:37
I know, it's very odd. And I hear I mean, I've listened to so many podcasts, because we don't really know anybody that has it. And we're still new enough, but I'm just trying to get as much as I can, you know, information wise and practical living and

Unknown Speaker 18:57
all of that sort of thing. But

Unknown Speaker 19:00
you know, it's just mine isn't going away. It's like, I got it. Yeah. Well, I mean, obviously, no, but

Scott Benner 19:08
no. Yeah. As far as time goes, right. Yeah.

Unknown Speaker 19:11
Right. Because there's no handoff like, there's not going to be Oh, if she's just in this trade, or if she's just this age, or if she's just, you know,

Scott Benner 19:21
yeah. I'm just trying. I'm just trying to get to this point to this point to this. And you're you don't you're just trying to every day,

Unknown Speaker 19:27
and we don't have that point. Yeah.

Scott Benner 19:29
I really do. I, you know, yeah, I think I've mentioned it a time or two. But when I first became a stay at home dad a very long time ago, it was not a common thing for men to do at the time. I think it's more common now and becomes more common as time moves forward. But when I was doing it, I got looked at very oddly. And I I really wanted to do it, but I was my expectation of what it was, was more about like functionality. Like, I'll feed that person and clean those clothes. And like, I felt like a job to me when I first started doing it. Until I recognize the things my son really needed that my, I always thought my wife would have just known to do, don't mean that I sort of had to learn to do. And then once I was doing them, there was just this moment where I felt like oh, my God, is this the rest of my life? Am I gonna get up every day and do this forever? And what are we gonna have another point, I'm going to start over again. And I just had to find like real meaning in it, in my right in mundane things. And I always use just cleaning the house as an example. But, you know, it sucks. Like it just the laundry sucks and cooking. And every morning of my life, I load a dishwasher and run it, like every Saturday, Sunday, Tuesday, doesn't matter, I get up, I feed those dogs. I take those dogs outside. And I say those dogs because they're lovely, except I take care of them constantly. And so they become a task. And instead of a dog, like if somebody takes care of your dog for you, what you have is a puppy that you can, you know, but when you're the one taking care of it, you're the one outside when it's 12 degrees, thinking like oh my god, just pay on anything. So we can go back inside, please. You know, and then it's then it's the next step. And the next step, and, you know, the floors need to be cleaned. And you know, and then you have to sweep the kitchen and go grocery shopping. And none of it is fun. Right? And I thought one day, but it is building a solid base for my kids to grow up in, they have an expectation about cleanliness and preparedness and stuff like that. And that's really valuable to them. And I had to find real like, satisfaction in that. You know what I mean? And, and I do, yeah, and I absolutely did. Because yesterday, I realized when my son came downstairs and I was in the kitchen washing dishes, there's something comfortable about the fact that I'm there to him. Did you know what I mean? Like, I feel like in the back of his head, he's like, that guy's always gonna be in my house, doing something supporting me. And it's sort of like a touchstone for him. And that makes me happy. But it took me a while to get to it. And I was really only having to talk myself into it on a 20 year gameplan. You know, like, I am dying to know like, what are the conversations like between you and your husband around those sorts of things. And where did the diabetes care fall to

the on the pod tubeless insulin pump is a mainstay in my daughter's life. She's been wearing it now, since before kindergarten. See, I'm starting to lose track of the years but she's 16 now. So for a very long time, my daughter has been wearing an omni pod tubeless insulin pump every day. And it is an absolute friend on the journey with Type One Diabetes. I don't know if you understand the nature of tubeless, or how much you understand about pumps in general. But every other insulin pump, with the exception of the Omni pod has a piece of tubing that goes from a controller that you have to wear like on your belt or in your bra or you know, in your pocket. And then the tubes go from that controller all the way to an infusion area on your body. Not the Omni pod though, on the pod is small and self contained. it adheres and that's it, when you want to talk to it. You just use the personal diabetes manage a little PDM. And then you can put it away and stick it back in your purse or whatever you want to do. But it's not connected to the pump by a tube. And that gives you a lot of freedom. Freedom to play sports unencumbered, or to take a shower. People with a tube pump have to disconnect their insulin to shower to swim, but not on the pod. You can just jump right in. The greatest part about this is that you can get a free no obligation demo of the Omni pod sent directly to you so that you can wear it and see for yourself. You do that by going to my Omni pod.com Ford slash juice box, fill out the tiniest bit of information about yourself. And just like magic, a whoosh, it shows up at your house. The whoosh was magic case you were wondering, or the mail, which is also kind of magical when you stop and think about it. pay somebody a couple of cents and a letter shows up anywhere. That's magical. It's not quite as magical as not having to inject three times the pizza, but it's pretty close. Now what are you going to want to compliment that beautiful Omni pod that you're wearing? A Dexcom g six continuous glucose monitor. This thing is the next level of understanding. You're used to testing your blood sugar and seeing Hey, my blood sugar is 150 great. Is it 150 and rising is at 150 and falling? Is it stable? You know what does this mean? My bazel not strong enough, should I have Bolus more for my meal? I don't know what to make of this 150 number. But with the Dexcom you see the speed, direction and number of your blood sugar whenever you want constantly, and you can see it right there on your iPhone or Android or on the Dexcom receiver. Let me look right now for Arden's blood sugar. Oh, Arden just ate a little food, her blood sugar rose a bit. She's 139 but I can see that she's coming back. So I don't feel like we need more insulin. I think we did a good job here. I can see that right here on my phone. Arden is taking her PSAT right now. How do I know that right? How come she's not here and I know that Sharon follow Dexcom g six users can have up to 10 followers. They can choose a school nurse or a friend or a parent, sibling, a loved one. Or if you're a little child, mom could be watching you while you're in gym class. The possibilities are endless. dexcom.com forward slash juicebox Get started today. I'm going to tell you right now, no BS Dexcom is one of the best decisions My family has ever made. You can find out more about all the sponsors in the shownotes of your podcast player, or at Juicebox podcast.com. But if you want that free demo of the Omni pod, it's my Omni pod.com forward slash juice box. And dexcom.com forward slash juice box to learn more about the Dexcom g six. I almost forgot. Veterans United States veterans through the VA Dexcom is now covered at 100%. Go to my link fill out the form. Find out more. Let's get back to Chari. What are the conversations like between you and your husband? around those sorts of things? And where did the diabetes care fall to

Unknown Speaker 26:48
bow? When she was born? We just kind of braced it. And in our conversations. Well, that sounds kind of bad. But you know, we'd say worst case scenario, she's with us forever. But that's not a worst case scenario for us at this point, you know, but like in our mind, that was like, Okay, if the worst thing happens, she's here, right? I mean, and we do our lives with her, you know, as a part of it. And so we've always been fine with that. Now with the type one and even when we were in the hospital after she was diagnosed, we just kind of looked each other like our world that was kind of small, just got a little bit smaller. You know it the tether got a little bit tighter.

Unknown Speaker 27:42
And we you just have to roll with it.

Scott Benner 27:46
And for learning and karma reasons you've never overthrown like a SubSaharan country or you don't run drugs through like Guadalajara or anything.

Unknown Speaker 27:56
years ago, you know?

Unknown Speaker 28:00
There's no you

Scott Benner 28:01
don't you don't you don't kill homeless people for sport or there's nothing like that in your background, right?

Unknown Speaker 28:07
We don't know.

Unknown Speaker 28:10
Yeah, yeah. No, so pretty much the care is on me. I mean, my husband's working full time. Yeah. Um, he's absolutely willing to do anything you know, and we still soundboard off each other and hey, I learned this what do you think about when we try that? And you know, but I mean, we kind of joke that I am a stay at home mom. But now I become a stay at home pancreas because, you know, I can't go anywhere without her and the PDM and a bag of stuff. You know, I tell you stay at home. pancreas is a strong contender for the title of this episode. Yeah, right.

Scott Benner 28:50
There you go. What about the What about some? What are some of the stuff that involves? You're like, you know, bathing like this that? Does your husband stay out of that? Or does it not matter? Does he

Unknown Speaker 29:00
know it doesn't matter? He's all in yet. He's awesome.

Scott Benner 29:05
Arden said Arden said to my wife the other day she goes, even if I got a boyfriend right now, dad still gonna be the guy that's seen my ask the most. And I laughed because she wears CGM that are hip. And yeah. And she, you know, they're in a weird position. So she's like, Can you help me put this on? I was like, sure. But she's, you know, becoming a lady. And, and, and it's, we had a short conversation about it one time. I'm like, are you alright with this? And she's like, I don't want to put it on myself. And I think gotcha. All right, right. I'm gonna put it in the wrong place and violently okay. I'm like, it's right here. I think you could do it. And there's going to be a day where she's just like, that's enough. You know what I mean? But yeah, she doesn't shouldn't care. So

Unknown Speaker 29:52
that's a bad night. Just get it done. Just get

Scott Benner 29:54
it done. And so in your husband's eyes, just a little girl and then she weighs the feel like that. Well. That's, I guess there's something really nice about that, honestly.

Unknown Speaker 30:03
Yeah, yeah.

Scott Benner 30:04
Is there? Um, do you have that thing? Where you're just like sometimes like, oh, not now, like I can't right now? And how do you manage your own health? Like, are you in super amazing shape?

Unknown Speaker 30:19
Always? No. Because I always think No,

Scott Benner 30:23
don't you? Don't you feel like like, the diabetes always makes me feel like I need I should be healthier. I should be around longer, like you start thinking about like, being alive longer, you know, just in case are going to need something. And then you realize, like, you're the person who has like, the least amount of free time in the world. I know. Yeah.

Unknown Speaker 30:44
Yeah, if I, like, you know, took my stress out on a run, that would be amazing, but I don't so.

Unknown Speaker 30:53
Alcohol, you know, it's

Scott Benner 30:56
well, you know, it's funny, I joke, but you can't do that.

Unknown Speaker 30:59
Like, right, right?

Unknown Speaker 31:01
No, yeah, no, I've no, I managed drinkers, though. There's not that, um, it's just a whole lot of being an appreciative for what is going well, and when you have to think about it long term, it makes it easier, I think, Okay. Because, you know, it's not, it's not like a thing, it's fine. I mean, obviously, I like to go to Starbucks, and, you know, just sit for a while, but even then, it's like, I'm just constantly checking numbers, that it's hard to disconnect, especially when I feel so much responsibility. Do you have you know, it's kind of it's hard to turn it off?

Scott Benner 31:40
No, I definitely know that. Do you ever look at your husband or just like, I'm going to leave now. And I'll be back sometime? And goodbye, or?

Unknown Speaker 31:49
Not really? No. I mean, maybe when the kids were younger, but I think every parent has that, you know, when they've just kind of hit their limit, but they're not really anymore. Gotcha.

Scott Benner 32:00
you've settled in into a real acceptance, I guess the word? Yeah, yeah. No, I think so. Yeah. And does that bring clarity to you? does it bring kind of calm and peace? And?

Unknown Speaker 32:16
Yeah, I think it does. Because when you just ask me that, it's like, No, I don't really lose it very often. And you think I would

Scott Benner 32:22
definitely think you, would you, I would think that but twice a day, you'd walk into another, like,

Unknown Speaker 32:30
everyone, you know, it's funny, because once you know, we started with the Down syndrome, and there were some issues at the beginning, and then you just kind of rolled with it. And it's always been, you know, they're a kid first and Down syndrome a second, you know, that your child first and then you just kind of have to deal with this. And so after years of that, you know, then it was just like, the type one was kind of like, Oh, well, why not throw it in there, you know. And so I still feel the same way. I mean, she's still a kid. We're still trying to, you know, keep her diet pretty much the same. We did kind of give up apple juice. That was a big one for her. So after she was diagnosed, it was like, now let's just leave those for Lowe's, you know, um, but I still try to think of her is she's just a kid, you know, I mean, a young adult, if you will, but, you know, and this just kind of comes along with it, I guess.

Unknown Speaker 33:26
Does she see and don't end? Oh,

Unknown Speaker 33:30
no, we're still will because she was diagnosed at 17. We were sent to the Children's Hospital.

Scott Benner 33:36
How long are they gonna let her go there?

Unknown Speaker 33:39
Until she's 21. Okay. And then we will have to switch to an adult, which I feel like by the time she's 21, I think I'll have a really good grasp on it and be okay with that. You know,

Scott Benner 33:50
let's find out where your grasp is right now. So when she was diagnosed, they started off with they give you a pen.

Unknown Speaker 33:57
With insulin they did. Yeah. So we started on pens, and they actually started her on Metformin. Also. She presented very oddly, and they weren't quite sure what to do with her. So we started on injections and Metformin. And then like, at our three month follow up, the endo, which we hadn't seen before. You know, we didn't see him when we were in the hospital, had said, I don't think we really need the Metformin. Let's take that off. And let's just, you know, where they replaced that if she needs more insulin, were they thinking try to I don't know what they were thinking. She just I mean, when, because we obviously like everybody else. We didn't know it was coming. And the only main symptom she had was weight loss. Okay, so she was not nauseous. She wasn't. She never told us that she felt badly. But her diet hadn't changed. I mean, I homeschool, I'm with her all the time. I knew what she was eating. I, you know, and we ended up at a walk in clinic right after Christmas with a pretty serious yeast infection. And they popped her on the scale. And I looked at the number and I thought, well, that can't be right. We had had her at the pediatrician, maybe in August. So sometime between August and December, and she had lost like 15 pounds. And she's not just

Scott Benner 35:31
a big person boyfriend to begin with, right? Yeah.

Unknown Speaker 35:34
Yeah, she's like, four, four. And she's teeny. Yeah, she's teeny. And so I thought, well, that's not normal. Um, and so they gave us the medication for the yeast infection, then, you know, have a follow up with your pediatrician. And so we scheduled that. And I took her in for that. And I said, you know, it was weird. I said, She's lost 15 pounds since August. And the pediatrician was like, yeah, that is kind of weird. Keep an eye on it, you know, put her on the scale. Like, don't be weird about it, but maybe once a week, you know, put her on a scale and see where she's at. And so, of course, I had to Google, you know, like, unexplained weight loss in kids. And the first thing that came up was diabetes, and yeast infection because of all the sugar. And so, I think I waited another week or so. And then I called the pediatrician again and said, I don't think now I don't, I just, it wasn't sitting right with me. I thought there's really no reason for her to lose this weight. And so we went back in, and I said, you know, I'm sorry, but I googled it, and came up with diabetes. And she's like, she doesn't have diabetes. Like, she's got no symptoms, she would be nauseous, she would be vomiting, she would be, you know, all these things. And I said, Well, if you're doing blood work, I said, Would you just run it anyway? Just so we know. I mean, we had type two in the family. And obviously, even when I looked it up online, I didn't. It didn't even occur to me that there were, I mean, I knew there were two types. But I didn't really know the difference. And so I wasn't even scared. At that point. Literally, I was thinking, Oh, if it's diabetes, okay, like, you know, we have grandparents for diabetes, they take medicine, they're fine, you know. And so they did the blood work, we came home. And maybe an hour and a half later, she called me, she was like, how far do you live from the office? And I said, I don't like five minutes, 10 minutes. And she's like, okay, so her numbers came back really high. She's like, if you would I want you to, you know, pack a bag. Because I've called the emergency room, you're going to be waiting for you. But would you swing by the office so we can do a finger prick just to double check that it wasn't a mistake.

Unknown Speaker 37:58
Okay. And, okay. I want to get

Scott Benner 38:01
you moving. But double check right before she sent to the hospital.

Unknown Speaker 38:05
Be sure. I don't think she did. Yeah. And of course, you know, I'm facetiming with my son who's away at school. So he's all up, you know, he's worried. And I'm worried because I'm thinking, are you kidding me? Like a bag? I haven't been in the hospital in years. Like, she's a pretty healthy kid. And I mean, well, so this was Monday morning, and we had tickets, the two of us, Amanda and I to fly to Denver on Saturday morning. So here, I'm worried about the trip, you know, and so we go back into the office, they do a finger poke, and she was like, 447. And she's like, well look at that. And she looked at me, and she said, You diagnosed your child. And I'm really sorry, that, you know, you kind of had to do that. And I you know, and so, off, we went to the, you know, to the hospital, and

Unknown Speaker 39:00
actually a Google did it. And there's no reason you couldn't have googled it. Like,

Unknown Speaker 39:05
I know. When I went in that morning, she's like, you know, I hate to say it, but you know, the only thing in her mind was cancer. Okay, because kids with Yeah, and kids with down syndrome have a higher incidence of getting leukemia, but you're typically diagnosed before you're three. And so I didn't want to go there. You know, I was like, Oh, no, we can't. We can't be dealing with that.

Scott Benner 39:29
Is it possible your your diabetes diagnosis online was hopeful like, you're like it would be better if it was this than what I'm thinking?

Unknown Speaker 39:39
Oh, yeah. Yeah. Because at the time, it never occurred to me that this is what management looked like. Gotcha. With type one. You know, I was blissfully unaware. Yeah,

Scott Benner 39:50
I gotcha. Yeah. You're like a pill. I could do a pill. Are you kidding?

Unknown Speaker 39:54
We do a pill for thyroid. We're good. She can take a pill. That's no problem.

Scott Benner 40:00
doubleback questions. One of them's okay. Because it's bothering me. You're in the, um, the upper Northwest, right? Yes. But are you from there originally?

Unknown Speaker 40:10
No. Well, originally I'm an army brat. So I have I was born overseas, and I've lived lots of places. But my husband and I met in Denver, which is where our families are now. And we have moved up here for for his job. Were you ever

Scott Benner 40:26
in the Wisconsin any Minnesota? area?

Unknown Speaker 40:29
No.

Scott Benner 40:30
Draw out your words. So

Unknown Speaker 40:32
do I sound like that?

Scott Benner 40:33
Well, I couldn't decide if it was if you'd been through Canada or there or but it's Denver. That doesn't make any sense to me. Okay, nevermind. All right, whatever. At least I can stop thinking about it now. Okay. Because you're telling me a really interesting story. And I'm like, where she from?

Unknown Speaker 40:50
Unfortunately, all over. This just must

Scott Benner 40:52
be the blend that you picked up along the way. And then I messed up, I need to go back and ask, um, you said Amanda's four, four, is your son is your son, how's how's your son?

Unknown Speaker 41:05
key? Well, I did not bring any help into the mix. My husband is almost six feet. I'm about five feet. So my son is about a five, nine and a half kind of in between us. And then people with Down syndrome tend to be shorter in stature anyway, and so we joke that, you know, I really didn't help with that

Scott Benner 41:30
at all. So Amanda, she's not a dwarf though.

Unknown Speaker 41:33
Oh, no. Oh. Got it.

Unknown Speaker 41:37
Yeah. And she was born super tiny. Um, so that didn't help either. The pregnancy was not an easy one. And she was two pounds 10 ounces when she was born. So she has always been a little thing.

Scott Benner 41:52
Yeah. Okay, I got it. Okay. I just had to wrap my head around that because when you set our height, I thought that must be a function of the Down syndrome. But I needed to ask anyway, so

Unknown Speaker 42:03
yes, they know Yeah, for sure. I mean, there's not very many tall people with Down syndrome at all, and I i did not contribute

Scott Benner 42:13
drunk drunk the average backwards.

Unknown Speaker 42:15
I did. I did. I know my son looks at

Scott Benner 42:17
me like you were the viewer. The thing standing between me and the height I want to be Vicki's Ron Kelly comes from a long line of tall people. So I am definitely the I'm the the weak link in that in that chain for sure. Yeah. Okay. All right. So at the moment, are you using the needles still? Or have you changed your management style?

Unknown Speaker 42:45
We have changed to an omni pad. We got that last November. So we were on injections for just under a year.

Scott Benner 42:55
Okay. Did she How did she tolerate the injections, by the way?

Unknown Speaker 43:00
No, amazing. I mean, I cannot even explain She is such a rock star. She absolutely rolls with whatever's going on. And at the very beginning, I would joke that there was no way I could lose it, because she wasn't losing it. I mean, she was just like, Okay, this is what we're doing now. Not great, but okay.

Scott Benner 43:20
I was wondering about that. Like, when you said like, if I approached her and I was kind to her, she'd go with it? Is that how she accepts the diabetes to or not that?

Unknown Speaker 43:30
Oh, for sure. Okay. I mean, she's not ever really, I mean, she didn't love that, you know, the biggest issue we had was changing out her Dexcom she did not like having the adhesive pulled away from her skin. But once we figured out, you know, unit solve and letting it sit there, and now it just kind of falls off and she does it herself. You know, we have really zero issues around the management at all with her. And I mean, I'm so grateful for it, because I hear stories, you know, tears and throwing on the floor. And, you know, I don't know if it's just because of her age that she's, you know, a bit more mature or if she literally would have been like that if we were diagnosed 10 years ago. Yeah, I don't know.

Scott Benner 44:16
No, I mean, it chasing a four year old. Around is one thing, but I don't want to be 18 year old around for her.

Unknown Speaker 44:26
I know. They would know. You know?

Unknown Speaker 44:29
I know. Yeah. So no, we're doing the pump. And she seems to be fine with it. I mean, we had when she turned 18 we have to we had to go through a whole guardianship thing and this lady had to come and do an interview and she had to talk to Amanda. And you know, she said I understand you have you know that you have type one diabetes. What does that mean to you? and Amanda just pulled out her. Her Omni pod was on her stomach and she just kind of pulled up her shirt and she was like, right there. That's diabetes. I mean that right there. That's what it is. So what's next? You know, I mean, that's her. That's your understanding right there. For now I have to wear this thing.

Unknown Speaker 45:16
And that's diabetes. Yeah. Well, listen, intro in

Scott Benner 45:21
it to her. That's exactly what it is. So do what, what about her day to day management? Do you see a lot of lows? Do you see spikes? Like, how do you?

Unknown Speaker 45:33
We see hardly any lows. Okay. I mean, ever, even since you've been diagnosed, I mean, like I said, I've listened to all these different podcasts and experiences. And we have a handful of lows. I mean, hardly any. We're still seeing some big rises, even with Pre-Bolus seen and I think, you know, about the time we got the pump was about the time she stopped honeymooning, because we have realized, oh, we're using a lot more insulin than we used to. And so, you know, we still see every you know, every few days, we still hit the 200 before we come back down. And I, I get so frustrated because I just want to master it and do the best I can for her, you know. So I get super frustrated with that. But

Scott Benner 46:28
are you've got nothing but time. So you're like a sci fi movie of somebody who's like on a different planet and can't get home, but you know, has enough food and oxygen. So don't worry, you've got time you'll figure it out your your time. So tell me about it a little bit. So when you say she doesn't get low when she goes 200? Like what's the range you're shooting for?

Unknown Speaker 46:55
We have the alarm set for seven D for a low? Or 75, I guess. And then we kind of treat it 70 if we need to. And then our high we shoot for anything under 140. So

Scott Benner 47:10
you're not going under 7075 very often at all.

Unknown Speaker 47:14
No Good for you. It's weirdly no like she's Yeah,

Scott Benner 47:20
never gets low and a bad spike is 200.

Unknown Speaker 47:24
Yeah.

Scott Benner 47:25
Okay, that's really great. By the way, where's there anyone see come in?

Unknown Speaker 47:29
Well, we ran after diagnosis, we had it at 6.3. And then with the poem, and Christmas and Thanksgiving, we jumped to 7.2 with our last one, but right now we have an appointment next week that will be by phone. And her estimated on our app is 6.4. So when you so we've kind of gotten it back under control.

Scott Benner 47:54
Yeah. What it sounds to me is happens a lot too is when you switch from injections to a pump. A lot of times the doctors sort of like don't have your settings as high as you need them.

Unknown Speaker 48:07
right for your bazel. Probably, she probably had her bazel too low. And yet we've increased bazel we've increased current ratios, we kind of tend to you know, in the hospital there would always say round down, round down will be always round off. You mean,

Unknown Speaker 48:26
yeah, round down?

Unknown Speaker 48:27
No, I'm always like, and another unit, you know,

Unknown Speaker 48:30
yeah,

Unknown Speaker 48:32
it'll be fine.

Scott Benner 48:33
I really do wish people could see me with, you know, with a pump in my hand on the pod is an example where you're pushing that, that arrow up. And, you know, because I didn't, I don't use carbery shit like ratios. Like, I'm not counting carbs than saying, you know, the pump says this much. So I'm rolling the number up, and I stop and push the button and nordeste like, is that how much you were shooting for? I was like, yeah, somewhere around there, it's fine. You know,

Unknown Speaker 49:00
and for me, I kind of do that. I mean, I've gotten to the point where I pretty much know how much insulin it's going to take. But I'm always thinking long term, and somebody's gonna have to take this over at some point. And so I kind of wanted to stay true to at least some sort of ratios so that you can tell if somebody else had to do it. Yeah, it's like, no, the pump is actually right. where, you know, it seems like it never is, but I'm trying to get to the point where it is where when I put in, you know her numbers, that is how much insulin she should

Scott Benner 49:33
get. Well, you know, when you come to a point where you know, this meal is seven units, you can engineer backwards and change your insulin to carb ratio to meet what you know is right. Does that make

Unknown Speaker 49:47
right and that's probably it does. Yeah. And that's probably what I should do. I just math is not strong for me and I want to do it. I just, I feel like I don't have to pass it off yet. I mean, you know, we're good. for at least another 30 years, but yeah,

Scott Benner 50:02
what I'm saying is that the pump says, you know, one unit for every 10 carbs, I don't know what it says, right? And right, it's really one unit for every eight carbs then just change the insulin to carb ratio to match what you see working. Right. That's all I'm saying. So, yeah, that's that that's, you know, I mean, the doctors just guessing when they set up here, and so the carb ratio, so you might as well, data that you actually have that's working.

Unknown Speaker 50:31
Like, Oh, God,

Unknown Speaker 50:33
well, yes. You know, she likes to eat pretty much the same things. I mean, you know, the other morning. Yeah, no, but now that we're all home, you know, it's like, oh, I'll make a nice breakfast. Did you know she ate to brighten your plate? She's like, yeah, tomorrow. Can I just talk what I normally have? Like, she wasn't impressed. Yeah, you know,

Scott Benner 50:52
like, stop with the fancy breakfast, and let's go back

Unknown Speaker 50:54
to exactly. Do what I like,

Scott Benner 50:56
I gotta be honest with you. I like a nice, simple meal. So did you hear online? They're saying the COVID-19 The 19 is for how many pounds? You're going to gain during your

Unknown Speaker 51:07
Oh.

Unknown Speaker 51:10
It's not the freshman 15.

Scott Benner 51:13
Yeah. Oh, wow. Look at you. Now the code. Yeah, it's another strong opportunity for the title of this episode. But, uh, so she likes a nice meal that is that simple. And sort of what she so that's helpful to you, right? Because you, you can kind of figure out good,

Unknown Speaker 51:31
yeah, yeah. Cuz we're after we got out of the hospital. Well, I mean, so we got there. You know, like I said, on the Monday night, and we stayed for two days. And I think on the second day, I said, you know, we've got plane tickets on Saturday morning, are we going to be out of here by Saturday? And they're like, Oh, for sure. You'll be out of here by Saturday. And I'm like, Can we fly on Saturday. And I think probably the best advice I got why we were in the hospital was your daughter is not sick, she just needs insulin. So the quicker you get her back to her normal, the easier it's gonna be on her. You know,

Scott Benner 52:08
it's definitely great advice, especially from a bunch of doctors who are probably high cuz of the weed thing in Denver, and everything.

Unknown Speaker 52:17
Anyway, so it's think we literally, we, the two of us got on the plane that Saturday morning, and we went to Denver, and so, um, even just the district, I mean, I guess I was going towards the, you know, she's even when we were there, I could keep her meals pretty much what she wanted, you know, I mean, besides eating now, and that was I didn't feel any pressure at the beginning to get it right. Because I didn't know you had to get it right. You know, you're not okay. We'll try with this and see how it goes. And your understanding

Scott Benner 52:52
of lows at that point. Like, did you did you? Like that's interesting to me? Did they scare you about being low? Or how did that? How was that in your head at the time?

Unknown Speaker 53:02
It's certainly No, they didn't really scare us about anything. I mean, the feeling I got from the hospital was just overwhelming. I mean, that's how I would describe it, but no fear at all. I mean, it was, it was just just like a discussion if they go high, you know, but it was, you know, if they get to 80 treat with 15 grams, wait 15 minutes, you know, the same rule that everybody seems to get, but there was no fear around it. So I, you know,

Scott Benner 53:32
was there also not any awareness? Did they explain to you what a low blood sugar was? And what

Unknown Speaker 53:38
could have been, to some extent, but no, not to like what could happen?

Scott Benner 53:42
So you have a blissful idea of like, oh, I'll give her too much or too little, the number will go too high or too low, and we'll fix it. And that'll be that.

Unknown Speaker 53:49
And move on. Yeah, I gotcha.

Scott Benner 53:51
No, that's kind of it's what you have to do. I just don't I don't, I'm not a fan of you not understanding exactly. You know, what would happen if she got too low? Going out? Right. When do you When did you realize that? Was it? Like, through online stuff? or?

Unknown Speaker 54:08
Yeah, it was because even the first time she had a low, I honestly was like, what do we really treat it? I mean, will it just kind of go back on its own or should I do something, you know? Yeah. Right. Right. Yeah. I mean, it was so you know, yeah. That's it. Yeah, yeah. But she just heard the Evergreen flow. And I don't know why.

Scott Benner 54:36
It's interesting. It really is. Um, okay. How do you find? I don't want I don't I'm trying to decide what my question is around this long term. What are your are your goals around management? Like, do you feel like there's any ability to teach her any of this or not? Or no,

Unknown Speaker 55:00
At this point, no, there's so much math involved. And, you know, I mean, even if she, okay, so like the other morning, I was super on it, and I Pre-Bolus and I was getting breakfast together, but I got a phone call. And so by the time she was actually eating, she had gone low. And I mean, she holds up her receiver. She's like mom juice. So she does know that when it alarms low, she gets the juice, like she has made that connection. But she was eating. And so I knew I didn't need to give her anything, because the food I mean, you know, give it 510 minutes, the food was gonna hit her and it was going to be fine. So even in that situation, it's so frustrating, because it's not black and white. Yeah. So I mean, I can't even tell her Yes, every time this alarms, you can get me for a juice, you know, unless

Scott Benner 55:57
we've just Pre-Bolus a little too soon. And you're already eating and the foods hitting us and

Unknown Speaker 56:01
you've already had half of your breakfast. Yeah. And then how do you know you've already had 40 of those carbs? And those are working? And I mean, it makes no sense to her at all.

Scott Benner 56:09
Yeah, trust me. In the beginning,

Unknown Speaker 56:12
oh, no, no,

Unknown Speaker 56:13
I know. And so it's super frustrating. So I need like at this point, because she's a senior in high school, we're looking at doing like the public schools have an 18 to 21 program. And it's like a transition program. So they get them kind of like a part time job. That's not paid. I mean, it's just volunteer experience. And they go with the job coach and do all that sort of thing. And so now all of a sudden, we're trying to figure out, well, does she need a nurse with her full time? Because I've been homeschooling? We haven't had to worry about it, I've been able to manage it. Well, you know, the job coach isn't liable for medical things. So they said the most a job coach could do. If it was lunchtime. All they could say is you know, Amanda, it's lunchtime. Don't forget to take your insulin, right? That doesn't sound like Well, that doesn't really work. No, not at all. And so even after she turns 21 when she gets a part time job, what does that support look like? You know,

Scott Benner 57:18
so you have to be thinking about the horizon for Omnipod when it comes out, right?

Unknown Speaker 57:24
Oh, for sure. Yes. And we went with the Omni pod just because like motor wise, I didn't think she could manage the tube. I mean, I'm not she she can go to the bathroom by herself. I'm not regressing on that. You know, I'm not. No, we're not messing with that.

Scott Benner 57:41
Like, listen to me a two makes me have to go back in the bathroom again. It's a it's a non starter.

Unknown Speaker 57:49
Bomb. He we're not doing that. super interesting. Yeah. This thing by the time it was, you know, we were talking about getting a pub. It was like, do I even have to go to the pump class? Because I know if we're doing the pump, I want the only pot No, no, you still have to go and I'll be

Scott Benner 58:07
interested to see how that how an algorithm works for you and for her. Because she's on such similar you know, meals and and my hearing like you can count on her to eat them.

Unknown Speaker 58:22
Oh, wow. She's got a fantastic appetite. Yeah, she eats really well. She's not picky.

Unknown Speaker 58:29
I mean, she's, she's easier to feed than my son.

Scott Benner 58:31
Right. So, um, I'm thinking maybe that, that ends up being really something spectacular for you. Because maybe there is a way to set up like, this is what you know, this is the meal. This is how much insulin, this is what time, maybe you could end up giving her you know, it's funny. I was going to call it freedom, but she doesn't see it as that right. It's not tire. She's not right. Yeah.

Unknown Speaker 58:56
No, it would be for me. I was gonna say

Scott Benner 58:59
yes, I am. So used to thinking of it the other way. And then I as I said, I was like, it was for you not for her. Yeah, although What is your husband's level of understanding of the diabetes stuff? Can he do it as well as you

Unknown Speaker 59:13
know, but he's getting more good. Yeah. Yeah. Yeah. It's just I mean, I'm around it. Literally. 24 seven.

Scott Benner 59:22
Yeah. So yeah, I went out the other day, Arden was busy at home. And we were like, at the end of a pump site, maybe. And I had to go you know, I had to go forage for food. So I was wrapped up and you know, out and her blood sugar was going up. And I you know, it's funny, I was in the store and I didn't take my phone out of my pocket because I just, I don't know, like it was in my head like, don't touch your phone, like don't get involved in touching more things. And you have a lawyer here. And I get out of the car and got myself like, you know, cleansed, and I pulled my phone out. Her blood sugar is going up and I came home. I looked at and I was like, What? What's happening here? I was like, nobody did anything. I was like, it can't be can't always be me. You know, like, I was like daddy was out killing a deer to bring home for.

Unknown Speaker 1:00:13
Right. I

Scott Benner 1:00:15
mean, I was really just in the grocery store, trying not to get you know Coronavirus and buy a pack of chicken breasts, but still, you know exactly what it felt. It's the first time it felt like I was out hunting, that's for sure. Oh, at the grocery store. And, and she's like, I didn't hear it. I was like, What? You had you heard it, right. I didn't. I've been I've been concentrating on my schoolwork and blah, blah. I'm like, my phone's muted. And I was like, okay, all reasonable reasons why she didn't hear it. But like, I don't know, like, it just I had that feeling like, ah, alright. Well, that can't be like that. Like, I have to be able to leave the house. And you have to have an expectation that I won't see my phone maybe once or twice. But you're like, you're just on the hook. You really cardio you really are. I feel I feel for you here. I don't know what the right word is. But you have my whatever it is.

Unknown Speaker 1:01:10
Sympathy,

Scott Benner 1:01:12
sympathy. concern? I don't know. Well, you definitely made a lot of people feel good about their situation today. That's for sure.

Unknown Speaker 1:01:24
I can help one person. I feel like you've helped

Scott Benner 1:01:26
a number of thousands of them. They were just like, Ah, my bad. Dad, okay. Well, listen, you you, I want to kind of finish with this idea. I say all the time, I just got done saying to a buddy of mine the other day. I was like, until your kid has something like this. You don't really know perspective, the way I know perspective. But you know, perspective right? way better than

Unknown Speaker 1:01:54
me. Yeah. Which I felt like I already had it. I mean, come on. Right. You know, like, really? Do I need more?

Scott Benner 1:02:01
But my question is, do you have more? Um,

Unknown Speaker 1:02:11
I don't think so.

Scott Benner 1:02:12
syndrome gave me

Unknown Speaker 1:02:14
all that I needed. Yeah. it prepared me for the type one. How about that? Yeah. No, I mean, we were already on a different path to begin with. You know,

Scott Benner 1:02:28
I was really just wondering, like, is there perspective beyond what people living with diabetes have? And apparently there's a ceiling.

Unknown Speaker 1:02:39
I think mine is just long term. I mean, literally, long term. I mean, for everybody that has those little kids, and they feel horrible about them having to manage it themselves when they get older. You know, I mean, at least Amanda doesn't have that burden. Somebody will have to do it for her. So she's fine with life. Yeah, I think, you know, I mean, really, she doesn't know any different at this point. And she doesn't seem to

Scott Benner 1:03:12
mind that she rolls with it.

Unknown Speaker 1:03:13
Ray. Yeah, she doesn't. I mean, I've never seen her like, Oh, don't you remember mom before this was like this, you know, there's none of that. It's just this is what we're doing now. And, okay, if that's what you're doing, that's what I'm doing. And, and she really does just roll with it. Well, so my point of view,

Scott Benner 1:03:35
God, I'm sorry, your point of view?

Unknown Speaker 1:03:37
Well, I think it's just, you know, like I said, Before, I can't lose it, because she's fine with it. So I have to be fine with it.

Scott Benner 1:03:45
You do anything for your mental health? Do you speak to a therapist? Or? Like, is there something back you shoot a gun out or something like that? Like, what do you do?

Unknown Speaker 1:03:55
I don't, I should probably have one on retainer. No, I mean, literally, I I think it's just my personality. I don't know. I'm like I said, I mean, I've had her for 18 years. So, you know, I can't be in therapy my whole life. Right? You know, I mean,

Scott Benner 1:04:14
you're, you're at your therapist is 110. And you're like, This isn't fair to say that.

Unknown Speaker 1:04:22
We'd be like an old married couple.

Unknown Speaker 1:04:25
Yeah, I guess. So.

Unknown Speaker 1:04:27
You really do you know, it's true. Yeah. So I mean, I have my moments. And I do really well for a while. And then, I mean, with the tungsten room. I never even thought about that anymore. I mean, and it's funny because now I think of the you know, my friends that just have Down syndrome, right? I mean, it's like, well look at them. What are they complaining about? Lucky

Scott Benner 1:04:50
kids. Down syndrome. I bleep that out. But that's what that's how I that's how I see you and your car looking over there like there. They are.

Unknown Speaker 1:05:01
Whatever. So now that is even taken a back burner, you know what I mean? It's like, whatever, it's just Down syndrome, that's fine. But my life now looks totally different. Even then it you know, even than it did before.

Scott Benner 1:05:17
Well, we named a podcast episode together a minute ago, by the way, cuz this one's gonna be called perspective ceiling, just so you know, that's where you go, because that's what I that sounds like, that's exactly what this is you've, you've literally have so much clarity, there's no more left to get. It's, I mean, I guess we should I say that, like, you know, your leg is getting like lopped off in a car accident or something like that you like doesn't matter to me. Like the end of a war movie, where they're like shooting the guy and all this lens, he's like, whatever, my buddies got out, I don't care. You know? My

Unknown Speaker 1:06:02
wish to laugh. I

Unknown Speaker 1:06:05
do. I mean, you either laugh or cry. So, you know, definitely cried, that's for sure. But you can't stay like that forever.

Unknown Speaker 1:06:14
You know, I couldn't imagine I

Scott Benner 1:06:15
mean, that would really ruin you and her and everybody, right? If you just write if you got caught up in it, or if you were unlucky enough to be an anxious or depressed person, by nature, I mean, really, this way, grab you and just shake you

Unknown Speaker 1:06:27
kind of push over the edge? No, you would think

Scott Benner 1:06:29
right? Do you know anybody who's in that situation? Who has their own? Who isn't? You know, uh, you know, a glass half full person to begin with, who then gets the Down syndrome put on top of them? Because, I mean, you see it with diabetes a lot. There's, you know, for every person who comes on here, it's like, oh, I figured out how to use the glucose monitor. And it's made a big difference, Scott, and I'm Pre-Bolus. And there's 10 people out there like, yeah, I'm too anxious to Pre-Bolus and I'm depressed. And you know, like, that kind of stuff is, is more prevalent than I think some of us give credit for. But do you see that in your in that community to where there's some people who are just beaten by this in a way that's hard to put into words?

Unknown Speaker 1:07:09
Another in my circle,

Scott Benner 1:07:11
but I guess that those are people who were reaching out already to make a circle. Get on me,

Unknown Speaker 1:07:16
right? Yeah. Right. And now our kids are 18 2021. And, you know, maybe if I knew them when their kids were born, you know, because we always we all have those birth stories where it's just like a like some people do. Some people didn't. Um, and I guess if you're not one that can handle it, and you have already dealt with that.

Scott Benner 1:07:39
Oh, that didn't occur to me. Did you know before Amanda was born?

Unknown Speaker 1:07:44
We did. Oh, okay.

Scott Benner 1:07:45
Yeah, yeah, you did man. To? To think about it. Yeah.

Unknown Speaker 1:07:49
Yeah. And some people will say, Oh, I wish I did. I wish I did. And I don't know what I would have done, you know, but for us, well, we just wanted to know what the sex was going to be. You know, like, with my son, we didn't have we didn't find out. I was like, oh, our first one are gonna be surprised. You know. And with this, the next one, it was like, you know, I kind of like to know, so I can at least plan a little bit. And, you know, when we first did the ultrasound, they thought it was even worse than Down syndrome again. They thought she had hydrocephalus. Okay. And then they said, Well, maybe hydrocephalus and Down syndrome. And so when the results came back for Down syndrome, it was kind of the same feeling. It was like, Oh, well, if it's just Down syndrome, then that's fine. You

Scott Benner 1:08:32
know, I'm gonna ask your personal we can handle that. And if you don't want to answer it, don't answer it. And if you want me to cut it right out, I absolutely well, but did you consider ending the pregnancy?

Unknown Speaker 1:08:44
No.

Unknown Speaker 1:08:46
No, I mean, our, our ob said, you know, I'm your doctor first. Right? And I'm her doctor second. So you're at that time, but if you want to you have so many weeks to decide, but no, we would have never got you know, is that a um,

Scott Benner 1:09:04
is that a decision based in belief, religion, just being a parent? Like, where did that where what was your perspective on making that decision? Or not even considering it?

Unknown Speaker 1:09:15
I think both. I mean, we are fairly religious. And so that was for sure. A part of it, you know, it was like, Well, if this is our child, and this is our child, you know, and it's already your child. So, I mean, I don't want to judge somebody else if that was their decision, but, you know, to say that, that you know, yeah, I mean, whatever it is, that's your kid, you can't decide what they're going to be like in 20 years. Why decide before they're even born hundred

Unknown Speaker 1:09:47
percent. Just wondering, I was just wondering where I mean, cuz it has to come up like somebody had to say to you, whether it was you or a doctor, or that's what I was thinking is that it didn't, right. We only had one person actually verbally Say, you know, you could just

Unknown Speaker 1:10:02
terminate and move on. Okay. And I was shocked. I mean, member shocked. What's that? Was

Scott Benner 1:10:08
it a family member?

Unknown Speaker 1:10:10
It was. Yeah. And I thought, are you kidding? And I just had to chalk it up to stupidity. mean, you know, like, how dare you?

Scott Benner 1:10:25
I wonder how many people just heard that and thought, oh, Allah, maybe I won't get so upset next time somebody asks me if I gave my kid too much sugar because it's basically the same. Now it's a similar statement, right? It's

Unknown Speaker 1:10:37
exactly, yeah. Well,

Scott Benner 1:10:40
your life has been interesting. And how old are you?

Unknown Speaker 1:10:46
I'm 45. Oh,

Scott Benner 1:10:47
my gosh. You're like, you're 45 and age and like 213 and wisdom and experience.

Unknown Speaker 1:10:57
You should be clarity, people's life questions.

Scott Benner 1:11:02
Do you? I'm gonna let you get out of this in a second. But do you find that other things in life just aren't overwhelming the way you see some? Maybe sometimes people, you know, like on social media are thrown by the simplest thing sometimes. Do you find that those things just bounce off you?

Unknown Speaker 1:11:21
Oh, absolutely. Absolutely. I mean, even, you know, my son played select soccer for years, though, super competitive, super high level. And the parents on the sidelines were just, I mean, you know, they're sports parents. But when you come from a soccer field, where there's kids that can't even work, like mine can, she can run, but there's kids on the team that are using walkers, or needing to be pushed in a wheelchair to participate. You kind of stand on the sidelines and go, Well, you know what, like, they're pretty gifted. And they're really talented, and they're in great shape. And as long as none of them lose a tooth during the game were good, you know? And they'd be like, How can you be so calm? Like, well, what differences this game make? I think I've heard you say, like, even for a baseball game, like, I don't know what the score is, I'm just watching them play. You know, I mean, I would know what the score was, but I didn't care. Yeah. You know, like, they're, and they're amazing. And be grateful that you have a kid that complete this level.

Scott Benner 1:12:31
No, I agree with you. I feel badly sometimes for people when they're so wrapped up in something that I think is, is a is incredibly momentary and isn't going to matter, you know, in a day, let alone a week or a month or a year. And right, and at the same time, I get it like they're, and I'm happy for them. Their lives are not encumbered in a way where they have to think that way or that they're drawn to think that way. But no, I've definitely had people say things to me and in the back of your head, you just think like, you know, if I give my kid too much insulin, something bad happens to her. It's hard for me to get upset about what you're talking about. I just, I feel like I have a different perspective. I don't have yours. Yours is right. Like the Avengers of perspective.

Unknown Speaker 1:13:16
Type One Diabetes just makes it that much more. You know, I mean, it was there to begin with, but no, it's life or death. You know?

Scott Benner 1:13:25
Yeah, I'll tell you something. If it means anything to people with younger kids. I think the way that we've dealt with my son playing baseball is one of the reasons why he's still playing it. Because at no point during this time, have we treated this moment as the most important moment. It's always been now for later, and you know, you're learning something today, you're getting better at something today. And when you take away the immediacy of the need for success, then it can look like a long game didn't mean like you can write and say to yourself, I'm working out on I don't know, a part of my body, or a skill at age 15 that I really don't need until I'm 20. So I have five years to develop it and get it right. Because if I don't succeed, with whatever success looks like, when I'm 17 and a high school baseball game, who cares? I'm really just trying to be ready to play in college. And if you can step back and see the big picture like that. Not only does it make the entire thing more enjoyable, it actually gives you the opportunity to to succeed, because when you start measuring success every Saturday afternoon, that's a that's a full that's a fool's errand, and it knocks most painfully slow, it knocks most people out. At some point, they have a failure, which everyone's going to have and they see it as such a trendsetter. moment for them that they think oh, that's it. I'm not right for this, I can't do it. And they give up instead of just it feeling like a building block. Anyway, genius when it comes to parenting is what I've just got done saying I really understand

Unknown Speaker 1:15:13
as a company, right.

Unknown Speaker 1:15:18
Alright, so

Unknown Speaker 1:15:19
I love it nice. So, you know, my college student is a totally different person than he would have been. Had we not been in this situation.

Scott Benner 1:15:28
Yeah, I believe that I believe that for certain, but what's your son going to college for?

Unknown Speaker 1:15:33
Key physical therapy. Good for him. He enjoys

Unknown Speaker 1:15:37
thinking. He does. Yeah, he likes the athletic part of it, too. Maybe like athletic training. He hasn't decided. But so you know, kinesiology kind of covers a lot of that. So

Scott Benner 1:15:48
listen, as long as he can get a job because you need somebody to leave that house. Listen, you're definitely leaving. Mommy and Daddy love you.

Unknown Speaker 1:15:59
Like there's no way you're living here. Sorry,

Scott Benner 1:16:03
you were getting the hell out of here. We're gonna turn your bedroom into a crying room. Just gonna put a lot of pillows and a futon. And anyway. Well, you are delightful. I really appreciate you wanting to do this and taking the time to do it and getting up so early in the morning. And that your day is like, Can you go back to sleep now? Or you're you're down? You're up, right?

Unknown Speaker 1:16:32
Oh, no.

Scott Benner 1:16:34
You're like sleep? What's that?

Unknown Speaker 1:16:39
Exactly. Oh, my gosh.

Scott Benner 1:16:40
All right. Well, I really appreciate that you found the show and that you reached out and wanted to be a part of it. I know. Thank

Unknown Speaker 1:16:47
you. Thank you.

Unknown Speaker 1:16:49
Yeah, it's been a huge source of information for me. It's been fantastic. I'm really glad.

Scott Benner 1:16:57
Hey, huge thanks to Carrie for coming on the show and sharing her life as the parent of a child with type one diabetes, and Down syndrome.

I'd also like to thank Omni pod for sponsoring this episode of the podcast, please go to my Omni pod.com Ford slash juice box to learn more about my daughter's tubeless insulin pump. And of course dexcom.com Ford slash juice box to get started with that Dexcom g six, continuous glucose monitor. If you're a US veteran, your Dexcom g six is now covered at 100%. Go to my link and check it out right there through the VA hospital dexcom.com. forward slash juice box two big deal. Congratulations to all of you. Do you have a great diabetes practitioner? Or would you like to find out about one, I have a link for you. Juicebox Podcast is proud to present juice box docs.com. It's a great list of doctors that have been suggested by listeners of the show. They send me the doctors, I make the list. That's it, how it works. So if you have a great doc send them over. And if you're looking for one, the list is growing every day, there may just be one near you. I just added some today for Michigan, North Carolina, and Switzerland, I think juicebox docs.com. And if you're looking for those diabetes pro tip episodes, they started Episode 210 here in the podcast, you can always listen to your podcast player. But if you're looking for a quick reference for them, diabetes pro tip.com. It's also a handy little way to share them with others. Two more things, then I'll let you go. Please, if you're listening in a podcast app, and you probably should, because it's really handy. But if you are and you haven't subscribed to the show, please hit subscribe. It helps other people find the show moves me up in, you want to you want to hear the backroom of this. If you subscribe to the show, which doesn't cost you anything, the show gets pushed up in search results. That's it. That's how simple it is. So the next time somebody types in Type One Diabetes into a podcast player, what they get back is the Juicebox Podcast. So if you'd like to show to be found more readily, subscribing is an easy way to help. And it makes actually a really large impact on the search ability of the show. Last thing, data. I don't want to say this. First of all, I should probably say data so the data people don't get all upset at me. But we get to answers more quickly. When we have more data. That's how science works. And that's why I hope you'll consider supporting the T one D exchange and their registry program and it kind of maybe sounds scary like scary like they want your data but they they asked these fairly banal questions about living with type one diabetes. But from those answers, which by the way is completely anonymous and 100%, HIPAA compliant, but from those answers, they derive data, or data, depending on who you are, I guess, or maybe right now you're thinking, no, Scott, it's definitely data. they derive this data that helps drive innovation. In type one diabetes. I don't know what the data is going to do next, I can tell you, it's already made impacts on things that have helped people living with Type One Diabetes, you know, I've talked about them before, but the ADA sets a goal a one C, and doctors go by that goal and data that the T one D exchange, collected and made sense of help the ADA, lower that goal. And that's a healthy thing for people.

Dexcom being covered by Medicaid, Medicare, I think it's Medicare. That came in part from that data, it helped move the process along test trips that are now covered by all kinds of different insurance plans that weren't covered before. That also happened because of this data. And more is coming in more is possible. And the more data they have, the better case they can make. And the better case they can make, the more impact they're going to have on the lives of people living with Type One Diabetes. Now, why am I telling you about this? It's a simple and easy way to support research and the show, it doesn't cost you a dime. You can drop out of it whenever you want, like, say six months from now, like oh should never done that. For reasons I can't imagine why. But let's say you thought that, just tell them That's it, my anonymous data, I don't want you to have it anymore. And they'll purge it and that'll be it. So anyway, if you're still listening, you might actually be interested go to T one d exchange.org. forward slash juicebox. It took me less than 10 minutes to join the registry, you have to be a US citizen who has type one or who is the caregiver or a parent of a person with type one. But that's it. Less than 10 minutes, you'll help move this forward. And you'll help support the show. T one D exchange needs up to 6000 participants. And there are easily more than 6000 people listen to this podcast. So if half of you guys went did it, it would be amazing. If all of you ended it. I'll tell you what, if you guys do that, if somehow 6000 people say you guys go and fill the registry at T one D exchange. I will move the show to three episodes a week instead of two. Because a lot of people ask me to do that. And it's a lot more work and it's a lot more of my time so I can't do it. But if you guys filled the registry, I'd be able to afford to do that. T one d exchange.org. forward slash juicebox. support the show support research. Honestly, you're just doing a great thing that it supports the show as a bonus. See what you think when you get there. I'll talk to you soon.

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