Diabetics Doing Raising a T1D with Kristina and Greg Dooley featuring Isa

[00:00:00] Rob Howe: Hello everyone, Rob Howe here, and welcome to the Diabetics Doing Things podcast. Just wanted to let you know that if you've been listening all the way to this point from the beginning, you're inching ever closer to hearing over 1,000 years of living with type 1 diabetes. Now, certainly there are some similarities in how we all deal with the disease, but I find it super rewarding to dig into the tactics, tips, mindsets, and insights that make us all different. If you hear something new, interesting, or polarizing, drop me a line. I'd love to discuss it. Holler at me on Instagram or shoot me an email. Okay, let's get back to the episode. Okay, so this episode is a little bit different. Not only am I interviewing a pair of T1D parents in Christina and Greg Dooley. They're parents that don't have type 1 diabetes, but their daughter Isa does. But I also get to interview Isa. So you get to hear firsthand what it's like to live with type 1 diabetes from a diabetic perspective of a first grader. So this first part of the interview starts with a little bit of a conversation between Isa and I and Christina and Greg, you can hear in the background. And then Christina and Greg let Isa go off and play, and we dig into a little bit more of the issues behind some of the challenges that Type 1 parents face. so really dig into the later part of this podcast but if you want to laugh a little bit and hear some names of some of your favorite t1d personalities in the meantime here comes the interview straight from the mouth of Inspired by Isabella

[00:01:33] Kristina Dooley: what kind of things do you like um posting on there what kind of pictures With Max and Mia. Yeah. And who are Max and Mia? Max and Mia are our sister.

[00:01:58] Isa Dooley: Yeah.

[00:02:00] Kristina Dooley: And what else? What other things on Instagram? What do you always ask to look at pictures of on Instagram? Yeah, say it. Bike Beyond.

[00:02:09] Rob Howe: Bike Beyond, yeah.

[00:02:11] Kristina Dooley: Yeah. We got to meet the Bike Beyond riders when they were in Cleveland, and so we've been following along. And where? Oh, we met them at Ethan's house, yeah. And who do you like to – whose Instagram do you like to look at of the Bike Beyond team? Sid. Sid. Sid.

[00:02:29] Rob Howe: Sid's my favorite too. I love his Instagram. He's so much fun. He's such a nice, kind person. I'm jealous that you got to meet him.

[00:02:36] Kristina Dooley: yeah was he pretty cool yeah you have to say it out she's nodding he's his first podcast this is your first podcast first time you've actually been interviewed what other people have you met from Instagram that you met in person that had T1D do you remember who are some of your favorite people Mary Mary Lucas

[00:03:09] Rob Howe: Mary's so great

[00:03:10] Kristina Dooley: and who else besides Nick Jonas

[00:03:20] Rob Howe: yeah what's something that you would want everybody to know about Isa even if it's not about T1D just something you like

[00:03:40] Kristina Dooley: What are some things you like to do? Yeah. Gymnastics. And what else? Tennis. She has a purple belt in Taekwondo.

[00:03:59] Rob Howe: Ooh.

[00:04:00] Kristina Dooley: It's pretty cool, I think. Only because that means you're tougher than I am. And you said you want to do karate and then I said no because you have to bow to older rank. Oh, that's why.

[00:04:15] Isa Dooley: Yeah.

[00:04:17] Kristina Dooley: And you don't want to because you said that you were older. What other things? Singing, dancing, anything like that you want to tell Rob about? Singing. Yeah. What about it? Who are your favorite musicians? Kidz Bop Kids. Oh, the Kidz Bop Kids.

[00:04:38] Rob Howe: Oh, yeah. For sure.

[00:04:41] Kristina Dooley: Yeah. Anything else? You're kind of... It's kind of a little bit of a stagnant interview with you. Yeah, you're kind of quiet. You want him to see you? Look at that! Hi there! There it is. See? Is that easier? He's just a regular person.

[00:04:57] Rob Howe: Yeah, that's just me. Hey, check it out. I got my pump. Let's see if my pump is here.

[00:05:04] Kristina Dooley: What were you going to ask Rob? Ask him. What we were talking about before we ate dinner. What were you talking about? About your liver? What's your pump's name?

[00:05:22] Rob Howe: What's my pump's name? um i you know i've never i've never actually thought about that i've never really named it

[00:05:30] Kristina Dooley: uh what's your pump's name i didn't name my pump i named my dexcom oh you what'd you name your dexcom butox paper you came up with that name no i didn't come up with that name yes you did no way yes you did no what yeah who else what other fun names have you heard of people's pumps or their dexcom which one becky beeper becky beeper okay her friend bella is becky beeper and then what's the one i told you what was libby's rob's talked to libby before yeah

[00:06:12] Rob Howe: i know libby dexter dexter yep that's for her dexcom yeah her pump How about this? How about if I I'll make you a deal I will come up with a name for my pump and before I publish this episode I'll tell you guys what it is Sounds like a good deal You've inspired me to name my pump so I'll come up with a good name for it Deal?

[00:06:44] Kristina Dooley: Yeah

[00:06:45] Rob Howe: There was one thing

[00:06:47] Kristina Dooley: because I read her some of the questions that you had sent me.

[00:06:51] Rob Howe: Yeah.

[00:06:52] Kristina Dooley: So what was the, remember the question that we talked about was about any kind of crazy highs or lows that you had? And you got super excited when you were telling me about the crazy couple of days you had. What, you want to tell Rob about that? One time I had 100, three days, four days in a row.

[00:07:14] Rob Howe: Just 100 the whole time?

[00:07:17] Kristina Dooley: Not the whole time, just one time every day. One time every day.

[00:07:22] Rob Howe: Oh wow, just like a streak of 100s?

[00:07:25] Kristina Dooley: Yeah.

[00:07:27] Rob Howe: That's wild. I've never done that. That's super cool.

[00:07:34] Kristina Dooley: What was the other one? You said something about your 57 on your Dexcom, which for me doesn't sound great. My Dexcom said 57 and I was 57.

[00:07:46] Rob Howe: So it was right on? It was all calibrated up? Well, that's super fun.

[00:07:55] Kristina Dooley: Anything else? Any other exciting things you want to share with Rob? Do you want to tell him maybe about, like you're going to be going back to school in a couple weeks, do you want to tell him what happens when you go to school, like what do you do in school, and what happens if you're low or high, what do you have to do? Because the nurse. Tell Rob. What do you do? Just tell us a little bit about your day. Like when I go to school. Do you ride the bus to school? No. How do you get to school? We drive me. We drive you. And then what happens when you get out of the car and you walk in the door? Go to my classroom. Okay. And then what? And then... What happens when you have to check yourself or something? What do you have to do during the school day? I mean, Mr. Gordon calls to the nurse. And then the nurse goes to the classroom. And then I found out I go to the nurse. What about it? What if you're high? Why? I have to drink a lot of my water. Can you show me which one line that's marker on it? It's a water bottle. Oh, you put a line on a water bottle? Yeah. So you know how much you have to drink? We didn't know that. Yeah. I'm going to come home. Okay. And what about this school year? Are you going to go to the nurse as much? What are we talking about? What are you going to do this year? What grade are you going in first of all? First grade. First grade. First grade. Mm-hmm. So what are you going to do different this year with diabetes stuff? Tell him. I'm not going to the nurse. Stop doing it. You're not going to the nurse? You're not going to the nurse ever? No, I'm not all the time. Not all the time. So who's going to take care of you?

[00:09:56] Isa Dooley: Um...

[00:10:00] Kristina Dooley: Well, how are you going to do that? How are you going to take care of yourself? Are you okay with checking yourself at school? Yeah. You think so? Yeah. And then what do you do after you check yourself? And what else do you carry with you? Dexcom. Yeah.

[00:10:27] Rob Howe: And mom and dad are on the Dexcom too, right? So they can see where you're at?

[00:10:35] Kristina Dooley: What's the craziest thing someone ever has thought your pod was? Your Omnipod. Tell Rob what are some of the things that people have thought your pod was.

[00:10:46] Rob Howe: Yeah, tell me. Tell Rob.

[00:10:51] Kristina Dooley: Tell that Jane story. Say it, it's funny. Go ahead. Don't think it's funny. Lean up a little bit better. Yeah, say it towards here. Lean up straight. Say one time. Every time at Chipotle, when I was there, someone asked where my pod was, and then mom said it was my insulin pump, and then he said, I don't even know what that means. And you just started cracking up.

[00:11:18] Rob Howe: You know what's funny? I met somebody at Chipotle once. The first time I ever met someone with a pump, I could see their tubing outside their shorts. So they were wearing shorts and I could see their tube. The first time I ever met another person with a pump was at Chipotle.

[00:11:37] Kristina Dooley: That's pretty cool.

[00:11:38] Rob Howe: That's funny. There you go.

[00:11:42] Kristina Dooley: And what else? Anything else? Tell them what you wrote on your pod. One that you had on there a few days ago. Don't Touch My Pancreas We decorate her Omnipod pods and we have pod painting parties and decorating parties. What's on it today? You can show it to me. It's a palm tree on it today. We're trying to pretend we're still at the beach.

[00:12:08] Rob Howe: Yeah, summertime. You got to hold on to summer because school's going to start soon.

[00:12:13] Kristina Dooley: That's right. Anything else? Any other funny stories? Nothing else. No other funny type 1 stories? Oh, what? Mason calls his pad his Wi-Fi hotspot. Her friend Mason calls his pad his Wi-Fi hotspot.

[00:12:36] Rob Howe: That's a way better name than I would think of. That's a funny name. Mason sounds funny.

[00:12:42] Kristina Dooley: Yeah. Do you have any questions for Rob before you go? Yeah, what do you have questions besides what's the name of his bump, which we'll find out.

[00:12:49] Rob Howe: Yeah, you'll be the first to know.

[00:12:51] Kristina Dooley: In the know. Anything else? Any funny questions? No questions? No? You sure? That's it? Well, thank you for talking to me. Yeah. You done? You're going to let Dan and I talk now? Can I say you're welcome? No. Okay. All right. You want to say goodbye?

[00:13:25] Rob Howe: Bye. Bye. Thanks, Isa. This is a little bit different format than most of my shows, which I like. I'm excited about just kind of like working out in my mind how I'm going to kind of produce this one and make it very unique because, you know, Isa being on it and then obviously you guys. So why don't you kind of walk me through, give me the background, you know, tell me a little bit about yourselves. and then kind of walk me through Isa's story and how we got to today.

[00:13:53] Kristina Dooley: Okay. So we are from Ohio, which is where we live. But we were living abroad for about five years for Greg's job and when Isa was diagnosed. So the kids were actually born in Argentina, and I should mention she's a triplet. So they were born while we were living in Buenos Aires, and we moved from Argentina to Mexico City and shortly thereafter probably about eight months nine months after Isa was diagnosed there and we have never we didn't have anybody in our family with type 1 we knew nothing about it it was we had to do obviously a ton of research when she was diagnosed and being away from family I would say that was probably one of the hardest parts about her diagnosis was that we were living in another country. The healthcare was great. We had, we were really blessed to have a great endocrinologist from the start in Mexico city. So that was extremely helpful in the process for us. And we, we actually, we just joked with somebody today that we were meeting with a friend of ours who's an adult with type 1. And, and we said that when Isa was diagnosed, she was diagnosed just before her second birthday, we hadn't been sleeping anyway for the previous two years. And so it just kind of, so really we haven't slept since 2010. So that was our experience when she was diagnosed. And her diagnosis story I think sounds like a lot of many, many young children's diagnosis story in that she was drinking a lot, wetting through her diapers at night, and we just thought they were normal toddler behaviors. And a teacher, a preschool teacher asked us to bring a bottle into school, a water bottle into school for her because she just kept asking for something to drink. And for some reason it just triggered in us that there was something off, that her brother and sister didn't need that. Why did she need that? So, of course, we, you know, did the magic of Google and looked up all these things and called the pediatrician. He had us bring her in for urinalysis, and then that was the start of the story. So we, again, it was, I wouldn't, and I wouldn't ever use, like, words like traumatic or anything like that when she was diagnosed. Because we didn't really understand, I think, at that point, the extent of what that meant. We knew that we were going to have to manage it. But we, I've told people before that when they told us we could leave the hospital after she was in the hospital for four days. And when we left, I thought, how are they letting us leave the hospital? I can't believe they're letting us go to do this because I don't feel like we know what we're doing. And even that weekend, I remember us calling the pediatrician just to confirm that we were doing things right because it just didn't feel like it. And now it's just such second nature for us. Yeah, just to add, you know, now in my mind right now, going through some of those first moments of diagnosis or after the diagnosis and those first, you know, a few hours and a couple days in the hospital and something that you said a minute ago of, you know, just meeting with families in a hospital setting. And, you know, you didn't use these words, but I'm sure you saw looks of just shock and for sure sadness and just not really understanding what's going on and why. And I think for us, we were fortunate. So we had all those things happen to us. So, you know, there were definitely tears in the hospital. There was the, you know, why is this happening to us type of questions that we knew we could never answer. and there was also you know we were very fortunate that we had a really great endocrinologist and we're still in touch with him today you know now we're five years almost five years down the line of diagnosis and still in touch with that endocrinologist even though you know we're no longer living in Mexico City so he's kind of followed us and stay we stay in touch and I'm mentioning that because he was a big influence on us in terms of our approach and our view of what this might mean for us and for our family and for our daughter. So I remember him telling us, you know, probably one of the first times we met with him, that, you know, this is going to be a big challenge, but it's not going to be impossible and you guys are, you know, going to be able to manage through this. and you know even to the point of you know he arranged or he reached out to his network and he had a another a mom of actually multiple children with type 1 if i recall she has maybe three kids with type 1 and her husband has type 1 she came to visit us in the hospital that first day i believe it was wow and you know she had a very similar message and here we are looking at this woman who's got basically an entire family with type 1 telling us that this isn't the end of the world So for us, I think that message on day one was really important for us, not only just in terms of physically, how are we going to manage all this, but emotionally. And the emotional side is, as you know, maybe even better than we do. The emotional side is often a bigger challenge than just the daily physical things you have to deal with. but you know that for us was really important in terms of how we viewed this challenge and you know we know other families or we've heard of other families where that was not the case you know they they went up against or their endocrinologist or pediatrician at the time basically started giving them a list of things they weren't going to be able to do you know starting that next day right And that was definitely not an experience. And, you know, we literally sitting in the hospital room on the first, I think it was that first evening, you know, as we're wiping away tears, we're thinking and talking through what are, how are we going to use this, you know, this thing that has just impacted our life and dramatically changed what this, what our lives are going to look like going forward and what our daughter's life is going to look like. how can we turn this into something positive? And, you know, we, that day we started a Facebook page. We started the Inspired by Isabella Facebook page. And we did that because we wanted to, we decided immediately, and again, this is going back to what I said about that, those initial comments that were made to us about how we maybe should be approaching this. and so we saw it as maybe an opportunity to educate people starting with our friends and family and do some things to raise awareness and you know try to put a positive spin on on you know a diagnosis that no one wants to to have or you know joining the club that no one

[00:21:12] Rob Howe: wants to be in right joining that big family that nobody ever asked for for sure I'm really glad you brought up those first moments and those first interactions with the doctors following the diagnosis, because I think like for a lot of reasons, that is the most important moment for at least the first few years of a type 1's life, right? Because, you know, you're going through and you're processing all those emotions of why did this happen to me? Is everything going to be okay? Where do we go from here? Do we know enough? Are we prepared? I feel like we're just been drinking from a water hose of information for the last 12 hours, right? And for me, I'd never clicked for me that I had had an amazing diagnosis experience and I had the best staff at Children's in Dallas and an amazing endocrinologist that I'm still friends with on Facebook today because I just didn't know any better and that was my experience. And until I started talking to people on the podcast and in the community online about the range of diagnosis experience and the range of education and awareness among endocrinologists and doctors, you know, even doctors who are diagnosing people who aren't endocrinologists in small towns, it can go so badly. So, you know, to hear that, you know, that was a huge difference maker for you guys when in, you know, in a foreign country, a total crapshoot and then you just have you know one of these great people who right from the start understands the things that you need to hear not only hearing from the doctor but also from somebody who's not a doctor he doesn't really have anything to gain or lose by telling you any information comes in and says hey it's going to be okay yeah yeah and even

[00:23:03] Kristina Dooley: beyond that so as we started to share our story you know through initially Facebook and you know probably early on a little bit on Twitter, but we were active on Facebook and we would get, you know, similar messages and stories from people from across the world. You know, definitely people across the country that we were getting messages from people in other countries that were saying, you know, thank you for sharing, whether it was a picture of ESA or, you know, something that we had shared early on and just commenting to us about how that inspired them. Maybe they had, you know, they were an adult with type 1 and seeing our daughter, um, dealing with this struggle and seeing our approach to that, you know, really inspired them to maybe make some differences in terms of how they were approaching things. Um, and those, you know, those positive messages and positive reinforcements for us, I think really, especially in those early days, help keep us going, you know, especially during some times that were really tough for us emotionally.

[00:24:10] Rob Howe: Well, and I think, you know, the emotion around that is, you know, is really relatable. And you guys said initially, you know, that your diagnosis story is like many others, you know, pediatric young kid diagnoses. But on the other end is like, I would argue that it's not completely the same because you guys of the mindset that you guys took. I mean, you can take this devastating piece of information a lot of different ways, you know, and I, you know, hate to use the word devastating, but, you know, it's a heavy piece of info and, you know, peak emotional moments for everyone involved. and you can choose to look at it like, oh no, why me? Or you can do what you guys have done and use it as a platform to raise awareness and help other people and chronicle your journey. And because of that, I think you reciprocate that positive energy in those people who are reaching out and telling their stories. So I would argue that you guys had a less than normal diagnosis experience.

[00:25:15] Kristina Dooley: Yeah, well, and I think part of it, I mean, one of the things that we have been very intentional about is how we talk about diabetes, how we talk about the impact that it has on Isa's life, our lives, her siblings' lives. We have not, I think it would be a very rare moment to find us where we are talking about the talking about the things that it may limit her in doing. And actually, even if I think if she were sitting here and you asked her, you know, to list something that she can't do because of type 1, she's still so young that she has never we've never told her that there's going to be a time in her life at, you know, at some point where someone may tell her that she can't do something because she has type 1, that would be so foreign to her right now, that whole concept, because we've never made it about, we've never said that to her, you know, like, you can't do that, or you can't, you know, you can't go to the birthday party because you can't have this, or you can't, you know, and I know, you know, parents all parent in their own way, in the way that they think is best, and so with Isa, we have just made the decision that we don't ever want her to think of this as something that's going to limit her, but knowing full well, that there will be times when, you know, she's, whether, you know, someone is judging her or she's feeling, um, stigmatized because of whatever it is or, or physically she can't do something. You know, we hope that's never the case, but it's a reality, but it's not her reality yet. And we're trying, you know, trying to shield her from it. I don't know if that's bad, but we try to make sure she doesn't think it's, you know, something that's going to keep her from

[00:27:03] Rob Howe: doing what she wants to do. Right. And I think you have to do that to a certain extent, right? because I think there are so many small-minded, and the awareness is so low in some ways from, you know, the awareness is so low from, like, the, even from the medical community, but also just, like, the general community. You guys there?

[00:27:31] Kristina Dooley: Yes. Yes, it got kind of garbled.

[00:27:35] Rob Howe: Got a little fuzzy. I think somebody was trying to Skype in on the other end. So back to that question, I think, you know, there's so many, there's so little awareness around the community from people who are, you know, that Isa could interact with every day. And you don't want a comment that's not even meant to be negative or is just somebody who doesn't know any better, because I think we were all in that, in those shoes at one point. If type 1 diabetes is not directly affecting you in some way or in your family, you typically don't have a great amount of awareness about it, which is something that I've had to deal with and sort of accept and soften my edges a little bit over the years because it used to make me upset. But you don't want an offhanded comment to make her, you know, really look in and question those things. So I think as a parent, setting your kids up for, you know, that I can do anything attitude, even though I have type 1. Yes, I have type 1 diabetes, but I'm still able to do whatever it is I want to put my mind to as long as I'm safe. So I want to focus on those those, you know, after you guys get the diagnosis, you have this great experience and this great resource in your endocrinologist. Just you guys are back home in either Mexico City or Argentina at this point. And what are those first days like and how, you know, who did you rely on? How did you how did you get through those days? And like you said, you haven't slept since 2010. So, you know, walk us through those first few months, even years, as you guys are getting to know type 1. and Isa is still growing and toddling and becoming a child, right?

[00:29:30] Kristina Dooley: Well, she was – so we were living in Mexico City, and one of the true benefits of having – first of all, had the kids be born abroad, and they were born in Argentina, and then having Isa diagnosed in Mexico was that we had access to very inexpensive and very good household help, meaning we had a nanny that lived with us during the weekdays. And I don't, I truly don't believe that if she, if we did not have that kind of help when we lived there, it would have been extremely, I mean, much more challenging than, than it was already. And so we actually, Greg and I were able to stay in the hospital with Isa for those couple of days when she was first diagnosed because our, um, the, the kid's nanny was lived with us. So she was at home with the other two kids. We came home with Isa, um, our nanny, her name was Lucy. Lucy went through basically type 1 training with us. She learned how to do injections. She learned how to, um, everything, um, every single thing that we learned, she learned alongside us. So it was almost like we had a third, we had a third parent, almost in some ways, helping us with her care and management. And we trusted her 100% with Isa, which meant that Greg and I, and of course this is not the case with the majority of parents who have a young child diagnosed, or even an older child diagnosed. Greg and I still were able to, it may sound selfish, but go out on date nights. We were still able to do some of those things because we did have another person who knew how to manage Isa's care. she was in preschool at the time it was a half day preschool and she would start i at around nine and at 10 30 i would go to the school and i'd check her blood sugar and i would give her um she was on injection so i'd give her insulin injection for her snack at school and then i'd walk back home and then we'd go back and pick them up at noon but she didn't have a dex time or anything like that so we we did somewhat train the the teachers there and again we were living in a foreign country. So we, it was a, luckily a bilingual school. So that everyone spoke English there and Spanish, but we had to learn a lot of the medical terminology in Spanish, obviously. And so anyway, that was our life for the, I would say the first year after her diagnosis, we ended up moving back to Ohio, um, less about eight months after her diagnosis and moved back here close to family and all of those things. And Isa started on her Omnipod shortly after that. So we had a somewhat difficult time finding schooling here in Ohio for her. Even though no matter how illegal it may be, many schools said that they couldn't take her because of the liability. And they just didn't want, they didn't have nurses on staff. And many of the preschools. And finally, there was a one preschool that said, you know, we've never had anybody with type 1 here. But if you're willing to teach us, we're willing to learn. And so we, we jumped at that. And so the kids were there for three years at that school and preschool through kindergarten. And we had a great experience with them. We had many every year, they would put a call, they had no nurse on staff, but they put a call out to the teachers and say, whoever wants to be trained on how to help Isa come and, you know, Christina will come in and train you or Greg will come in and train you. And we did that. And we just showed them how to check her blood sugar. She was on the pump. So we showed them how to use her pump. And then about a year later, when she was four, she started on her Dexcom during, we went to a children with diabetes conference, and she was able to do a Dexcom trial there. And we kept it after that. So she's been on that for three years now. Wow. Um, for you guys, uh, for mom and dad,

[00:33:38] Rob Howe: those emotions while you're trying to find a school, um, you heard a lot of no's, right? Um, and like you said, legal or not, um, at that point, you're just looking for a solution.

[00:33:50] Greg Dooley: uh what were those days like um you know it was it was hard hearing some of the the responses and i think it became you know as christina was saying earlier we try you know first we never look at type 1 diabetes as something that's going to limit isa ever you know and she certainly doesn't think of it that way um and it was kind of our first maybe recognition that there's other people that may view it as a limitation and other people that will use it to stop her from doing the things that she wants to do or from going to school that she wants to go to in this case and you know I there was one response in particular that always my mind and the response from after we toured the school and I think Christina had followed up with them or maybe they followed up with us. And they basically said, you know, we would love to take Mia and Max. We can't take Isabella. So, you know, if you want to send the other two here, we'd be happy to have them. And I just, it was upsetting. But at the same time, even if that was a school we loved, and in this case, it wasn't a school that we really loved anyway. But even if that was a school that we really absolutely wanted our kids to go to, that kind of response and, you know, unwillingness to accept someone who is, quote, different for whatever that reason may be, you know, that's not a place that we would want our children to be in or not a place that we would want to associate ourselves with. So it was tough. And also just because of the, you know, logistics of we had to find a school. You know, we moved back. We had just moved into our house, I think, at the time. We were looking at schools. And schools are beginning to fill up as well because it's close to the start of the new school year. So we were kind of getting concerned of, you know, are we going to find a place or not? And so it was not only upsetting, but just, you know, know, we're dealing with trying to find a school at a time when everyone else is looking for school. So, but again, that was probably the first realization that, you know, that this could truly become a challenge at some point, whether it's, you know, Isa not being able to, you know, get into the school that she wants to go to or not being able to pursue a certain career field that she may want to pursue. And, you know, that comment is always in the back of my mind.

[00:36:34] Rob Howe: Yeah, and I think, you know, as a parent, whether you have a child in the – I think it's a lot more personal when you have a child that they consider different or that they can't take for whatever reason. But you're faced with that decision. It's like, you know, do I want to set this precedent with them? And, you know, what kind of example does that set? But at the same time, it's very challenging because, you know, like you said, your timing is a big part of it too. Trying to, there's always so many different pieces that go into those types of decisions. Sure. Always so much information. And, you know, sometimes you just have to make the call. So, you know, I'm glad you guys were able to do that because I think, you know, a lot of people have had similar stories. And, you know, again, it's just a lot of people don't realize, like, and you could probably take Isa through, even at that point and as young as she was through a school interacting all the time. And they might not even be able to tell the difference. And then you tell, and then you tell them that she has type 1 and then they, you know, Whoa, Whoa, Whoa, not, not us. Yeah. Right. For you guys, you know, in those moments, either, you know, when you were coming back to the States or, you know, early on with the diagnosis, was there ever a moment where you guys were like, you know what, we got this, You know, come what, you know, whatever curve balls are thrown at us. I think we've, you know, we're going to, we definitely can do this. We can make it.

[00:38:00] Kristina Dooley: I think, I almost hate to say it. I think that we had that blanket feeling almost from the beginning. I hate to say it. It sounds a little pompous. I don't know if I should say it. We definitely have had, I mean, there are definitely, we still have challenges all the time. I don't, we definitely don't mean for it to sound like things are roses every day. And there certainly absolutely aren't, you know, but we, I think, made the determination then that there was no point in us having a pity party about things that we, um, we are both very firm believers in your children will take their social cues from you. You know, they will take, you know, almost mirror how you react to a situation is how they're going to absorb that, you know. And so I think from the start, we felt like, what can we do? And like Greg mentioned, I remember sitting in the hospital for those couple of nights, and we were online looking up ways to get involved, like ways to do something, because I think it also helped us channel some of that fear, anger, sadness that we did have. It helped us put it to better use, I guess, instead of, again, us sitting in the hospital. And I think a lot of that did come from, you know, this woman that came to the hospital that Greg mentioned who had the couple of children with type 1 and the spouse with type 1. You know, she basically, that was what she did. And I think had she not come, maybe, and I don't know that it would have changed things all that much, but I do think that it nudged us to say, you know what, we have to make sure that life for Isa is the best it can be. And if she sees us just sitting around being sad about it, being frustrated and angry all the time about the diagnosis, we're not doing her any good and we're not doing any good for the cause either in terms of helping to make things better. So we've, you know, we've gotten involved in a lot of things over the last five, I can't even believe it's going to be five years. It's so weird to say that. Because it feels like it's new. There's still times when it just still feels new. But, you know, we've been really intentional about the things that we've gotten involved in and exposing Isa to as many opportunities as possible and people. I think her meeting young adults, including like even having this conversation with you today, it's she she takes those things when she talks with people that have type 1. She she's she's, I think, like a 35 year old in a situation. She doesn't she prefers to be around older, older kids or young adults as opposed to her peers, peer age. And I think part of that is just because her responsibilities have made her not be able to necessarily enjoy all those same benefits of just staying a kid, which is also extremely sad to even say out loud. But anyway, I do think a lot of the people that we've engaged with and met through the Diabetes Online Community or the Children with Diabetes Organization or anything like that, I think we've really, those have been a lot of the silver linings of this disease. And I feel like we could name so many things, you know, so many things that this is actually people that we've met especially that have come into our lives because of this.

[00:41:34] Rob Howe: well and i think um you know a couple things from you know from your response like i'm continually surprised at how grown up young type 1 diabetic kids are um i spoke to a teen panel uh at a jdrf event at type 1 nation this year in dallas uh for the second year in a row and just like the i don't know it's weird it's like an emotional quotient it's like yes they're very intelligent they're able to like make decisions from data about their own bodies and they can look at a pile of food and tell you how many carbs are in it and they're very smart but also just very so intelligent emotionally and can you know understand how their mood and their uh you know outlook affects their body and you know how to talk to their parents and how to talk to other adults and just navigate troublesome waters, I guess, you know, because the, like, they just get used to overcoming obstacles. And I think that's so beneficial, you know, especially where, you know, today, you can take the easy way out of almost anything. And it's just very refreshing and inspiring for me to be around people who, yeah, are like five year old, seven year old, 35 year old, you know, And on the other end of that, I think, you know, my own experience, I was, again, to echo your commentary about not wanting to sound pompous, but I pretty much knew from the get-go I was going to be okay. I was super reassured when my doctors told me everything was going to be fine if I took care of myself. But I also wasn't very involved because I was 16 and too cool for stuff, you know, and I was real. I didn't want to go to diabetes camp. I didn't want to do runs and walks. I was like, I was Mr. Too Cool for School. But since I've done that, and since I've gotten involved, I don't think I realized how lonely I was shouldering all of that, you know, daily walk with diabetes on my own. And so, you know, to hear what you guys were saying about Isa talking with people and interacting with other type ones and being sort of in her element there and the impact that that has, I totally appreciate it. And it's not just for me, not just emotional, not just like feel good, but also like clinically I, uh, I've had, I had, since I started diabetics doing things, I think my, uh, a1c was like 7.3. So not super, you know, not super high, not out of control by any stretch, but since then, like now I'm down to 6.1. So, and somebody asked me, I like made a Facebook post about it just on my personal page. And they were like, well, what's different? What did you change? And when I looked at my actual lifestyle, nothing had changed drastically. You know, I was, I'm still relative. I'm pretty healthy. I live a pretty healthy lifestyle. I eat really good. I exercise, but I had just become more open about my diabetes and communicating with other people who are going through the same things as me. And I don't know, just my stress level and like cortisol levels are just much lower about it. And I feel much more in control. So, uh, that's one of the things that I'm rambling right now, But that's one of the things that I try to tell all type ones from the get go whenever I do these visits to the hospital education sessions is the more you can get involved. It sounds really cliche, but the more you can get involved in whatever way that is, whether that's just communicating with people on social media or, you know, doing the walks or going to the events, going to the conferences. Those make huge, huge differences in your quality of life.

[00:45:09] Kristina Dooley: Absolutely. Yeah, I think there's definitely something to be said for being part of a community, whether it's, you know, the type 1 community or whatever community you're involved in. And and, you know, I think there's a lot of positive effects of that that, you know, sometimes we either don't think about or just don't even realize. So I think that's all very good points.

[00:45:32] Rob Howe: So for you guys. Advice for other parents. So because children are complicated and every, you know, no matter the age of the diagnosis, anywhere under the age of 18, you know, even up into the 20, early 20s, I think for parents is a, you have that shock moment. Talking to my parents years later, you know, they were like, well, we, A, thought we were to blame. We didn't really know. You know, there's just like our DNA mixed weird and there and, you know, you got this. You were the one that got it. we used to sit up nights when I was in college and I was away from home they didn't know what was going on and they would worry what would you tell parents of recently diagnosed kids what advice would you give them

[00:46:22] Kristina Dooley: I can start with that I would say some of the things we were talking about earlier is find your support network so whether that's your doctor your friends, your family the online community, which is a really great support network for a lot of people, including us. But find that support network because, and just as you were saying, Rob, you know, without it, you kind of, there's something that's missing and you can't always pinpoint what that is. But when you, when you're involved in a community and you, you know that you have support or you know, there's people that you can turn to for support that goes a very long way and, you know, of helps with first with a lot of the emotional burden that comes along with either living with type 1 or, you know, having a small child with type 1, um, and being around other people who, you know, quote, get it. Um, that's really important. And for us, that's extremely important. So we have, as Christina was saying, you know, we've met a lot of people, um, through the online community through local events, through other events that we've been to, and other, you know, things that we have done to raise awareness. And that support is, it's hard to really even describe how important it is to us, but it's extremely important. And, you know, we have a lot of friends, parents of other children with type 1 that we've become very close with, because they understand everything that we're going through and we understand what they're going through. You know, we can share ideas and tips and just sob stories or whatever it may be, funny stories. And all of that for us has been really, really important. So that's really the first piece of advice is just find your people, you know, find people that are going to be supportive. And you're also probably going to come across people who you know are not supportive. And those people are not going to be very helpful for you in this whole journey. And so try to, as much as you can, stay away from those kind of people, the people that are the opposite of supportive, because that can really be a drain on you emotionally as well. Get involved. For us, that's been really important. I know that people do what either they can do or what makes sense for them. So, you know, I don't think just because we're involved in a lot of things that that's the right thing for every parent that's out there. But there's all kinds of different ways to get involved with, you know, with JRF through Beyond Type 1, through other organizations, local, you know, networking groups. So there's lots of ways to do that. you know our we talked a lot about our approach and how we think that that approach works really well for us or our approach to parenting our approach to managing type 1 and that doesn't we don't say that because we think that's the only approach you know we don't feel that necessarily we just believe that that's what works for us so I would say for advice to parents is find what works for you and keep in mind that your children do look to you in terms of the things you say. And we're talking about this, a diabetes podcast, the things you say about diabetes, how you react to highs or lows, how you react to choices that maybe your child has made that impact a higher or low, you know, all those sorts of things. And so, you know, we try very hard not to overreact to things and not to, you know, make everything be about diabetes. And sometimes that's really, really hard. But we also think it's really important because as we were saying earlier, you know, our reaction to something as simple as a high blood sugar or low blood sugar. It may not even be our reaction to Isa. It could be, you know, my reaction to Christina, who was the last one that bolus Isa for lunch. And, you know, now she's 300 and I, you know, I'm wondering what happened and what she ate or whatever. And the way I say that to Christina or ask about it, if Isa's sitting there, you know, she's going to pick up on that. And then, you know, whether it's in that moment or at some point later on, you know, she's going to have a different way of thinking about those things. So, you know, trying to keep that in mind as well. I don't know. Those are three pieces of advice. I have two, I think, important, maybe not obvious, but very important pieces of advice for parents. The first is when people offer help, offer to help, take it. I think so many parents don't want to do that. They don't want to burden someone. They don't, someone, you know, another, your child's best friend's mother or father say, teach us how to check her blood sugar or his blood sugar. Teach them. They're offering for a reason. This is not something where people just arbitrarily offer stuff. I think if there's someone that's willing to help you and, you know, even if it's a neighbor who says, you know, teach me how to read the Dexcom or teach me what to do this with this. I want to help you so that you can have, you know, an hour, you know, to go run to the store. You can do this or whatever. Take it, take that, that help. Don't, don't be too proud to do that. I think that's how so many parents try to do everything themselves and you just can't, you can't, you just can't do it, which leads to my second piece of advice, which is I've said before that one of my favorite quotes that I really need to take to heart myself more is the quote that you can't pour from an empty cup. And so if you are trying to do everything for your child's care and forget about your own care and your own health, that's not good either. You can't be the best parent to your child if you yourself are not managing your own care. So I think that that quote is really relevant for all the deep parents and caregivers that are out there, whether it's, you know, moms or dads. And I think, you know, one of the things that we talked about at the beginning, Rob, is just that this is a, it's different because it's Greg and I both on here. And I think that's also something that's a little bit different that we've found in the diabetes online community is that you do see a lot of mothers and it's, I don't think it's for lack of dads wanting to help with things. I think it's just a motherly instinct to try to manage everything ourselves. And so we've really, we are a true team. I mean, we, everything that we do with Isa's care is a team. And, you know, Greg will tell you that I do not do Dexcom changes. I cannot, it's just something I've not been able to, um, master or even attempt really. Um, but on the other hand, I have no problem if we have to do, you know, middle of the night blood sugar We're both getting up to do those things if we need to. You know, we don't, it can't be one person. You have to have a team and you have to let the other person, whether it's the mother or the father, you have to really work on that as well. Because again, if you're not taking care of yourself, you're not, you know, your child's care is going to fall, you know, not be the best it can be either. And that also extends to, you know, taking care of yourself in terms of, you know, for example, taking time to exercise. So those kind of things and be active and even just get time alone is really important. You know, we go, as Christina kind of joked, we haven't really slept through the night since 2010. And she jokes about it, but there's, you know, a big truth to that. And so, you know, you go through as a parent of a child with type 1 where you're managing everything for them. and, you know, they can't really, you know, either they're not old enough to do things on their own or they're just not there yet, all of that burden falls on you. So whether it's, you know, waking up in the middle of the night multiple times, which happened to us last night, we had a pod change at, you know, 3 a.m. or whatever time it was, you know, those things take a toll after days and weeks and years of doing that. And so sometimes you just need time to, you know, take a break and take a rest for yourself. But then the extension of that. No, and it's not selfish. Right. So that's a good point and good, you know, advice for parents to hear. Just because you're not, you know, you want an hour to yourself doesn't mean that you're being selfish and doesn't mean that you don't care about your child whose care you're managing. But that also extends to other relationships in your life. So obviously your spouse, you know, you have to work even that much harder to maintain that relationship when you're constantly dealing with, you know, sleeplessness or just being exhausted all the time and stressed and worried, all those emotions. and you can't lose sight of the fact that there's a lot of relationships in your life that are important and you know you don't want those to suffer because of you know there's so much focus and you have to put so much focus on type 1 so what it means is you have to also make time or find time to focus on those other things that are important whether it's exercise eating healthy your marriage, your other children. For us, that's really important, especially because we have triplets. Even before diabetes came into the picture, there's this constant comparison that happens sometimes in your mind as a parent of how much time you spent with one child versus another or what you did with this one yesterday, now you have to make sure you make that up with the other one, or there's the whole fairness that comes into it. And especially as our kids have gotten older, I think we've always tried to, as much as we can, give, I don't want to say equal attention, but make sure that we're giving balanced attention to all of our children. That becomes really difficult when you have a child with type 1 because just naturally by default, that child is the one that gets a lot of your attention. And so we've tried to find ways to ensure that doesn't happen. And sometimes that's a struggle. So I would say that's another piece of advice is just the relationships and also with your other children, making sure that you're making time for them.

[00:57:44] Rob Howe: wow all uh amazing amazing perspective um sort of keeping everything in focus it's a lot of things to uh to juggle at once um i think you guys would be the first to admit that as well for sure yeah um i want to ask one more question um kind of before we close because i uh i've managed to schedule another interview right back to back. So look at me, look at me just balancing and keeping, keeping the juggling and doing multiple things at once in, in play for type ones. But as parents, you know, with an amazing outlook and an awesome perspective, what are you most hopeful for, for type 1 and for, and for Isa in her life?

[00:58:35] Kristina Dooley: take that one well i'll christina's i can see her her mind is uh turning so she's thinking but um you know i when you asked that question my initial thought was you know probably the natural response you might expect to hear is you know we're hopeful for a cure we want a cure for our daughter and it's not my my response is is I don't want you to or listeners to interpret it as I don't want that because you know clearly I do but I look at her and you know that's not even as a six-year-old you know almost seven years old that's not even a really a thought in her mind you know in fact recently there was a time we were watching a video that we had made at one point and at the end of the video I say something along the lines of you know support I think was a JDRF video and I said or maybe the beyond type 1 type 1 day 1 video and you know there was a comment in there about supporting efforts towards a cure or something along those lines and afterwards you know I've got tears in my eyes and Isa turns to me and says something like, it was something like, I don't, I don't want a cure. And it just kind of like was heart wrenching for me to hear her say that. And I, and I asked her, why, why, why would you say that? And she said, well, you know, I like, I like having my pod and I like, um, you know, painting it. And so it was kind of almost a childish response to it of, you know, she likes having this, likes being able to paint her pods. That's what she likes about it. It's not that she likes having diabetes. But it's, you know, I guess what I'm hopeful for is, first of all, that there are a lot of advances in technology that help my daughter live a better life. So for us right now, that's her Dexcom, for example. That's been really a lifesaver for us and is also helping her to better manage everything. So she knows when her Dexcom starts going off and it shows that she's, you know, 70 and dropping, she knows that she needs a juice or some glucose tab. So without that, she may not have been able to make that connection. So I'm really hopeful that, you know, the new technologies that are coming in the near term are really going to be helpful for my daughter and, you know, the type 1 community. You know, I am hopeful that there will be a cure at some point in the future. but that's not really for me today that's not necessarily at the top of my mind you know it's really making sure that my daughter lives every day to the fullest you know even with type 1 that she's able to do everything that she wants to do whether she has type 1 or not that while she has type 1 that there's going to be even better technologies that's going to make it easier for her to manage her life or manage her day-to-day life. And, you know, those are the things, I guess, in the near term that I'm hopeful for. You know, other things I would say is, you know, we do a lot to share her story and just engage with the type 1 community. So I'm hopeful that, you know, that her story helps to inspire others to maybe have a different perspective. I don't really have much to add. I would say, I echo all the things that Greg said. I mean, for me, the biggest thing is I want her to be happy and I want her to be healthy. So it's pretty basic, but important.

[01:02:24] Rob Howe: Very important. All great answers. And guys, thank you for digging in with me a little bit and really opening up and letting us into what life is like for T1D parents, even ones who are very active in the community and have had sort of an amazing and inspiring outlook from day one. I think it's just inspiring to hear how you guys work together and, you know, and manage to do all these things with Isa and then also be good, good parents to your other two kids, too, which is, you know, something that sometimes must be very, very difficult, I imagine, especially with triplets and ones T1D. And then, you know, they're all all alike in so many different ways. And then just one, you know, it's so it's a I'm sure it's a delicate balance. So I appreciate you guys taking the time and, you know, really being so open and willing to share.

[01:03:22] Kristina Dooley: Yeah, thank you. Thanks for chatting with us. Yeah, thanks for having us on. And thanks for doing what you're doing, too.

[01:03:29] Rob Howe: Oh, well, thank you. I love it. It's one of my favorite things. So, you know, it's shifted my perspective so much to just to be able to share and get to know, even for just an hour, you know, some of the other type ones that I, you know, had never had the chance to interact with for the first, you know, 11 years of my T1D life. So I'm hopeful that I get to meet more awesome people like you guys. And, you know, I'm going to keep doing what I can do to make sure that that happens.

[01:04:03] Kristina Dooley: Awesome. Great. Well, thanks, Rob.

[01:04:07] Rob Howe: Yeah, thank you guys. And I just sort of ended the recording. Oh, shoot.

[01:04:24] Unknown speaker: Thank you.

[01:04:59] Rob Howe: Thanks for listening to Diabetics Doing Things. Subscribe to our newsletter for weekly emails and behind-the-scenes content. And if you or someone you know has an amazing story to share, send an email to rob at diabeticsdoingthings.com.