A Mother's Fight: Raising Two Kids with Type 1 Diabetes

💙 A Mother's Fight: Raising Two Kids with Type 1 Diabetes 💙

Imagine being a young mom, completely unaware of what type 1 diabetes is—until it changes your world forever. That’s exactly what happened to Michelle, a fierce and loving mother of two daughters diagnosed with T1D.

In this heart-wrenching yet empowering episode, Michelle takes us on her emotional journey of navigating misdiagnoses, sleepless nights, and the resilience it takes to raise not one but two warriors battling type 1 diabetes. From learning the ropes of carb counting in 1999 to embracing life-saving technology today, Michelle’s story is one of strength, love, and an unwavering fight to ensure her daughters thrive.

👀 If you're a T1D parent, a fellow warrior, or just someone looking to understand the raw reality of this autoimmune disease, this episode will hit home. Plus, we dive into the power of community, self-care, and why no one should have to fight this battle alone.

LET'S BE FRIENDS!
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☀︎ Rebecca Instagram:  / https://www.instagram.com/rebeccaroccanti
☀︎ Nick Instagram:   / https://www.instagram.com/nickroccanti  
☀︎ Website: https://palmrstyle.com

#Type1Diabetes #T1DParent #DiabetesAwareness #PalmerFam #TouchedByType1 #DiabetesCommunity

Transcript

Rebecca Roccanti  
Hey, Palmr, fam. I'm Rebecca and I'm Nick and welcome back to the urgent lows of Palmr, where we talk about lifestyle and type one diabetes. Here

Nick Roccanti  
we believe in embracing self care through life's challenges. So today we have an incredible guest. Her name is Michelle. She is a mom to not one, but two amazing daughters. She both had type one diabetes. She is very connected with touch by type one, and has done some amazing things. And so Michelle, thank you so much for being here. It is a pleasure. Thanks for having me. Yeah, so we cannot wait to learn more about your story, share about some of these awesome projects that you've done, and about your daughters. Yes,

michelle TBT1  
they are my heroes, for sure, so I'm really happy to talk about them. So

Nick Roccanti  
let's get started from the beginning. As we said, you have two daughters with type one diabetes. Tell us about them and a little bit about their story of them getting diagnosed and all that. So my

michelle TBT1  
oldest is Alessandra, and she was a toddler when she was diagnosed, but this is back in 1999 I was a young mom, and I had zero clue what type one diabetes was. To me, diabetes was an old person disease. You know, the grandmother who has a little bit of trouble walking, or that old person who gets toes amputated. That's the extent. I had zero clue that there was another kind of diabetes. So she was slowly losing weight. And, you know, it came to a point where she became very lethargic. She was still in diapers. Anytime I would put my baby somewhere, she would just kind of stay put, not it's like the glow, who she was was kind of gone, and I would pick her up, and anytime I'd pick her up, wherever she was, there was a puddle of your end and, you know, so then it just kind of like, well, this is weird, you know, it started, and then my mother had actually traveled, and she was away for A couple months when she came back, of course, you know, not living day in day out. She really noticed the significant weight loss, and she said, My God, Michelle, something's wrong. And, you know, still not really seeing too much. But then when she became lethargic, when she just was not being her, her normal self, not that little toddler running around and active, almost. I mean, she was just gone, and it was this sadness. It was so then we took her to the doctor, and in one week, she was misdiagnosed three different times. Kept taking her a doctor, I took her, and then I know that my mother had took her again, and they just kept saying, this is a stomach virus. This is a stomach virus. And you know, she was tripping over herself at this point. She was vomiting everywhere she was going. And I remember, it was a Saturday, and I looked at her, and it just hit me so hard. I thought, something is so wrong. The doctor is not saying what it is. So I had contacted my dad, and we drove to the hospital. We were in there, she's just laying on me. I mean, really, like, I hate saying it, but almost like a dead body. I mean, she was just on my chest, no movement, no facial expression. And it was a PA who walked into the room, and he immediately noticed a fruity breath, and he said, Well, this is one of two things. This is either malnutrition, which I'm thinking, oh my god, you know, or diabetes. And I thought, obviously not malnutrition, I mean, you know. And I thought diabetes. And I'm telling you, it was all of a sudden, like a wave of team of doctors and nurses kicked me out of the room. At least eight professionals in there. It was so intensive. What they were doing to her. She was yelling and screaming, she was crying and she was all she kept saying, was, Mommy, I am breaking down in the hallway. And I mean, they were doing IVs, they were doing catheters. It was very invasive for this little 18 month old, yeah, and then they came back and said she has type one diabetes, and at this point, I'm laying in the hospital bed, she's on top of me now. She's really just done after going through that trauma. And I looked up at the doctor. I'll never forget this. I looked right at his face, and I said, Is she going to die like I even this is 26 years ago, and it still gets to me. And he turned away from me and said, We're doing what we can. And that was the first time that I thought, I mean it. You cannot describe that moment as a parent, thinking, this is my world, yeah. And because of being misdiagnosed over and over and these symptoms going unnoticed, here we are, and now we're gonna have to fight for her life and and, of course. Just, you know, as a mother, you'll do anything, you'll give anything. And so from then on, boy, did our lives change. I mean, it was just a completely different reality, you know. And once we left the hospital and I went home, and, I mean, I am nowhere close to being a nurse. I've never held a needle in my hands. And here you are, this little to me, my little baby, an 18 month old, and at that point, it was multiple daily injections. It was finger pricks. And again, this is back in 1999 so the technology was very different. I mean, how do you describe something like that? The impact was so tremendous, and the fear, the devastation, and at that point, not knowing what the future looked like anymore. You know, you have your hopes and dreams, and you know, when I started learning a little bit more about type one, it was shorter lifespan. You can't have kids. You know, there's so many different things that life is no longer normal. And that was another component on top of the pain was, I don't know what her future looks like anymore, so you mourn that, as well as losing that healthy baby.

Rebecca Roccanti  
Oh yes, so traumatic. It brings me back to, like, hearing Nick's story with Parker. Yeah,

Nick Roccanti  
so much of your story reminds me of my story with my son, where, I mean, first off, just the wet diapers, always wet, always something going on and and then it was like Parker was again, like, almost like dead. Like, always drive, yeah, he's like a rag trying to hold him throwing up. You call the doctors and again, it's that they say, Oh, it must be just a stomach bug, right, right for the flu, dad and you did just a little morass and and I just the saving grace that I had was I had this little thought pop up in my brain saying, I need to say this to a doctor. And I was like, I have no earthly idea if this is related in any way possible, but he is wetting himself like insane, like every winning through every single diaper, non stop pink. I don't get it is that would that I feel like I just need to bring that up. Wow. And the nurse, because it was a Sunday, so I'm talking to a whatever the nurse on call is, and the nurse gets coin goes, that changes everything. I go, wait, what do you mean that changes everything? That's not the answer I was expecting, yeah. And they're like, I need to go talk call, make a phone call. I'm gonna call you back, or somebody's gonna call you back in the next few minutes. So like, being next to your phone, like, okay, and literally, like, two minutes later, my phone rings. I picked up. It's a doctor this time, starts asking me questions and goes, Okay, I need you listen to me very carefully. Like, I need you to get your son up end the car. Do not delay anything. Do not try to pack anything, grab anything. Like, immediately in the car, I need you to drive to Arnold Palmer hospital. Don't go to any other hospital. Go to the ER and say, We believe my son is a type one diabetic, and he's in DKA and needs immediate help. Yeah,

michelle TBT1  
is that you the same hospital you guys went to? No. So we were in Bradenton, Florida, so right south of Tampa. And no, it was just a general hospital, but, um, which, you know, we had nice, good care there. But over the years, I learned real quickly you don't go anywhere but a children's hospital. Yeah, yeah, their story, you know what? I don't remember what her numbers were it. I I know that, have we waited maybe another day or two, she wouldn't be here with us. I mean, it was just that critical, and

Nick Roccanti  
that's how I that was my understanding with my son as well. Like, it's just, it's devastating to know how close to death they were absolutely in that time, and the fact that people don't know, and that's one of the things, I think, with Palmr and one of our like, it's not like a public mission, but for us, because we know how, how often kids are misdiagnosed, that we want to tell people, make people more aware. Because, like, you no idea. I remember being in the car driving to the hospital being, like, diabetic, like, listen, type one. Like, there's different types. You have no earth. The idea none of it makes sense. And so if we can. To educate, share people have a little bit more understanding, and hopefully have parrots Know the signs that maybe we can save a life absolutely and make a difference. Because it is crazy. Your story, my story. I hear it all the time, and it's crazy how many people are just misdiagnosed, when all they could do? I again, I know the doctors have a million things going on their house trying to have a bunch of people, but why don't they think about, well, maybe we need to do a blood test

michelle TBT1  
and so simple too. Yeah. I mean, I remember, especially my oldest growing up, that they would do a finger prick for hemoglobin, I believe is what it was. I know it was a finger prick. And I'm thinking that simple finger prick, you just did that. It's that simple, yeah, to check for glucose. And I mean, if, if they come in, and especially if they come in more than one time, I'm telling you, in one week, we went to the same pediatrician three days, yeah. How did it get missed? I do know that when we were in the hospital, she gave us a call immediately upon diagnosis, and kept calling throughout the night. And, I mean, you could tell there was a lot of guilt there, yeah. And then I remember when I went back for a subsequent appointment, well, check probably she's like, you know, since your daughter's been diagnosed, I've diagnosed a few others. And so it was two sided for me. I'm like, Well, I wish you would have caught my daughter, but at the same time, I'm sure it was a huge wake up call lesson for her, and now hopefully she wouldn't misdiagnose other kids the way she did mine, yeah, you know. And, and it, to bring it down to it being just such a simple check, these kids shouldn't be misdiagnosed, or it shouldn't get to a point where they're in DKA.

Rebecca Roccanti  
Yeah. We have these friends that their son, their youngest son, he has frequent urination, very thirsty all the time. And when she met us and we told him the story about Parker and Evie, she's like, Oh, I've been constantly asking, like, our doctor or pediatrician to finger prick him. And they do do it because she requested it, because she knew, I think there's somebody in her family, diabetes does run in her family, type one, so she knew the clues and what to start asking for. So she goes in straight away to the pediatrician. Is always like, can you please finger prick him and see he's always it's been normal. Knock on wood so far. So Well,

michelle TBT1  
that's wonderful. And then my question would be, how many pediatricians actually have a glucometer? Yeah. I mean, do they? They all should, right, have a glucometer that you get from free from the drug reps. So, you know, it should be part of the equipment

Speaker 1  
they have. It definitely should, yeah. So

Rebecca Roccanti  
let's talk about so you said it was 1999 right? 1999 so obviously, technology has come a long way since then. So talk to us about that first night, first week of having this diagnosis, like, Did you get any sleep? Like, I would imagine, I

michelle TBT1  
didn't get any sleep for many, many years. So you know, that brings us to my other daughter, Isabella, who, when she was three, she was diagnosed. And so Alessandra was, I think, right around 12 or 13 years old, and she was completely different. She was diagnosed very early because it just so happened that we were actually out and we went to go celebrate something. So we went to an Italian restaurant, and she was complaining off and on about like these stomach aches, but that was it. And then we went very late one night, and then we came home, and the whole ride home, this was, we were about two hours away from home at this point. And the whole ride home, she's like Mom, my stomach, my stomach again, a little three year old. And I just again, it's that one moment in time that I looked at her. She's sitting in her car seat, and I thought, you know, I think I'm gonna check her I have a glucometer clearly, yeah. And so we got home, put the girls to bed. I was pregnant, by the way. I was very pregnant, and we went and my husband and I are like, oh, let's just catch the latest episode of whatever we were Binging at that time. And then right before going to bed. So this is right after midnight. I said, Well, let me just clear this off. I mean, I knew she didn't have diabetes. I knew it wasn't that, but I thought it's just, let's it's a check mark. Yeah, off. What the possibilities? So I went, she was asleep. I pricked her finger and it was over 300 I thought, oh my gosh, something's wrong with this glucometer. Honest? Because they can't be honest. I'm like, I, you know, at that moment, it really didn't register. I'm like, something is wrong. So I called my husband. I said, Hey, go grab the other one. And so he grabbed the other one, and it read, Hi, I'm like, these, these dumb, gosh, we barely use gluco. Wonders anymore, but these dumb test strips, yeah, I'm like these test strips. Get me another test strip. So did it and it registered high. So these are two glucometers, two different this other good comrader, two different test strips. And wow, it hit me. It hit so hard and it, it wasn't that again. I get teary again. It's so funny how we relieve the relive these moments. I mean, it's been so long ago, but you put yourself back there, and it's just as a parent, your heart and soul, you're just crushed all over again. Yeah. And so I just, I was in a total state of shock, yeah, total state. And I my husband, he had to walk away, and I heard him sobbing, oh my god, sobbing. And at that moment, and then which woke up, our oldest woke up, Alessandra, and she's like, What is going on? And I mean, you it's, I wish we could have have found out before, and then eased into this. But it was happening right then and there. And told her, and she started sobbing, and she said, not my sister. So they they got situated, they were okay. And then there was the moment that I could break down. And I'm, I think I was about six months pregnant, and my whole body starts convulsing, yeah, you know. And how old was Bella? She was three, three. Okay, she was three. So again, our world was turned upside down. And so technology at this point. Alessandro, when she was around the age of nine, she got on an insulin pump, okay? And at this point, there was not a Dexcom, especially not for pediatrics. And so when you ask about sleep, so she's diagnosed in 99 and at this point, we're still waking up, you know, we try. Obviously we're tag teaming every two hours. But you know, it's, it's like having a newborn and never getting out of that newborn phase, right? Because you're, I mean, you have to wait, yeah, you cannot not wake up because of what could possibly happen, which has happened to us before. You know, having, we've woken up with seizures in the middle of the night. So yes, many years of no sleep. And then Isabella was diagnosed. And you know, we just had to learn again, what the multiple daily injections like, how to do that just your mind to be put back in, that, that state of mind, that, that mind frame of like, oh my gosh, take us back there again. Oh my gosh. I can't believe we're going back there again. Oh my gosh, you know, I mean again, a period of mourning, a devastation, of, you know, feeling like the ground has completely been pulled out from under you, yeah, and then being pregnant on top of that, which was, so

Rebecca Roccanti  
did you take Bella that night to the hospital? So called

michelle TBT1  
my parents in the middle of the night they were living that so now we're in Orlando, which is before we were in Bradenton, and had them drive two and a half hours over. You know that night when it happened, I think Isabella pretty much slept through the whole thing, but my husband, myself and our two girls, we all just got in bed together, kind of just like holding each other. And we needed that. We needed just to hold one another to be there. And as soon as my parents got to our place, we put Isabella in the car and drove straight to Arnold Palmer, and that's where that began. And she spent a few days in the hospital. And I actually asked him, I said, Please, don't let me go. You know, I obviously, I know what type one diabetes is, but I I could not believe this was happening to us again. I could not believe, like, you know, Alessandra having diabetes was supposed to be a fluke. Yeah, it was supposed to be, you know, I had a very complicated pregnancy, and it must have been because of the pregnancy. So it was environmental, yeah. Never in a million years that I think I'd have another child with type one, yeah? So I actually asked him, I said, Listen, as much as we can stay, let us stay. I just have to wrap my mind around this. So

Rebecca Roccanti  
then does your you're pregnant at the time. So does my mind like, OMG. Now and

michelle TBT1  
now, I thought, Oh, my God, I'm two for two. Yeah. So I actually that that set us into the direction of saving not only the the blood, but we saved the cord, which was supposed to do, you know, it's the blood I like the blood bank. The blood bank, exactly, and the blood would be just for that particular person, right? So for that baby, but if we save the cord, it could extend to more members of the family, wow. So then we, you know, he's 13 years old now, and so we were hoping, you know, you never know. At that point, stem cell was. A big topic, and because that all happened, we saved it. But then it was always like, okay, 18 months old, three or three year old, and now it's like, okay, will he be six or when will that shoe drop? Yeah, but knock on wood, you know, he's 13, and do you randomly pick his finger whenever he's sick? Okay, um, you know, we were always, it's always in the back of the mind, like, if he's sick, if he's drinking a little too much water, I'm thinking, oh, you know, let me just check. Let me just check. But you know, speaking of sleepless nights, so Alessandra is in middle school, and now I have a toddler and an infant. And I mean, we were very much alone. We didn't we were new to the Orlando area. We didn't have friends, family, moved or lived far away. And oh my gosh, I remember just one day I had to get up, and maybe Isabella's like, four or five, and I went to go check her finger. I looked I had checked my sons instead, and he was just there, like holding his finger. And I just remember looking up and I see Isabella here, Isaac here, I'm checking his finger. I'm thinking, Oh my God,

Rebecca Roccanti  
I need sleep so you didn't act when I give him insulin. We've heard a story of our friend that she was at a sleepover, and it was like the siblings both had, or maybe they had one sibling with it, the other one didn't, and the dad gave the insulin to the wrong doctor while she was sleeping. But you know what crazy things happen when you're selling deprived,

Nick Roccanti  
right? Well, there's a funny story, though, where there is a time where one of the kids went low. This is probably about a year ago. Yes, I go and you'll get Gatorade.

Rebecca Roccanti  
Well, first I decided to paint our interior doors black. Oh, I'm like, let's be trendy. Let's

Nick Roccanti  
do black, because I wasn't even gonna tell that story. That's another good one. Oh, I thought that was the way we're going. No, anyway, we'll finish that one there. Yeah. So yes, we had just painted all the bedroom doors black and it was dark, so I'm not turning all the lights. And normally, my daughter's door is, you know, cracked open. All that it was not cracked open. I go straight, full force in through the door. There was a mark on my switch, straight in through the door, about knocking myself.

Rebecca Roccanti  
It was like his entire face apparently he's on the door, and this noise. And I'm like,

Nick Roccanti  
what happened? So we got that one. But the one story I was actually gonna tell is when the kids go low, I get up, I go to the kitchen, get some Gatorade, I come back, I walk back into the bedroom, and I hold the Gatorade, oh yeah to me. And I'm like, trying to give her the gator and she's like, What are you doing? I'm like, what? But Oh, my goodness, wrong person. And

Rebecca Roccanti  
he's like, what the straw like trying to get it into my mouth? And I'm like, Hey, like, what are you doing?

michelle TBT1  
That really makes me feel so much better. I haven't told many people that story, but yes, that

Rebecca Roccanti  
it's so true. I think we need to have a whole episode of what goes on when you're sleep deprived, and what like type one diabetes sleepless nights, because it's a real thing. Oh, absolutely it is, yeah, and I know, and I've talked about it before that, when I came into the family and we got married and we moved in together, I was so nervous about it, like the nighttime stuff scared me, like to death. I'm like, what happens if Nick sleeps through it? Like, if it's low, like, what's gonna happen? So we had multiple I had my own phone alarm going off. We had multiple phones in our room all at once going off. And I think it was like, three months in, I got shingles. I got the shingles. I wasn't sleepy, really. Yeah, I was super stressed out. And, yeah, my body was just like, heightened with like, stress, and I got shingles at think it was like, 3132 Yeah, yeah, it was horrible. But, yeah, it's just like crazy things of like, and you really can't describe it. Like, when we were dating, of course he can be, like, I have two kids with type one diabetes, right? Like, of course, I know it, but no one can prepare you for that. Like, no one can I know it,

michelle TBT1  
unless you live it. Yes, so, and that's the where isolation comes in, is that, you know, of course, we, we have wonderful friends, and you know, they're always there to support us, but until you live it, the day in, day out, and not just for a few days, right? This is Yeah, 24/7 and 365, days, yeah, until there's a cure, so until you live it, which is why community is so important,

Nick Roccanti  
yes, and that's one of the things that for us. I've talked about this on the podcast, where, if there's one thing I could have done differently, because my son, in April will be going on 10 years having type one diabetes. I never got involved. I knew one family who had a type one diabetic because someone after Parker was diagnosed, said, oh, you should meet these people. Um, so I had one friend who had a daughter who was older. I think you guys actually all know them. It's the Swartz family, yes, yeah. So Brian, me and Brian became friends, but that's like he was literally my only friend that I knew, but I was never involved with it. I didn't know anybody. So it really was like you felt so alone and looking back, the one thing I wish I did was go get involved with the community. And you know, you're very much. We met you through touch by type one, and we just absolutely love what they're doing, because it is so community based. And you just said it already there, like you need that community, because until you meet somebody who's actually going through it, people just don't get it, yeah, and then how? So that's and they, they don't, right? It. Can't blame them for it, right? It's just so crazy that until you live it, you truly don't understand and why you honestly just need to get involved with the community, like touch by type one, or wherever you're at normal, because it is like, Well,

Rebecca Roccanti  
I think that probably came about for us, because me, as a stepmom, I just felt so isolated. I mean, there was the whole stepmom component of it, so there's the outside noise where, you know, there's not a lot of hype around it, there's more negativity around it. And then add in type one diabetes for both kids, and I would explain things, or kind of like, vent to friends, and they'll be like, well, you knew he had two kids, you knew they had type one diabetes. And it's like, yes, you're right. Like, I knew all these things, but no one could have prepared me for what the life was. And I feel like in those times of feeling so alone was when I was really like, Hey, Nick, is there like groups that we can join that are type one diabetics? And, like, I started finding someone like Facebook, and then we got connected to Elizabeth through a business organization that Nick is in because she he met Jeff first, and then the rest is history. And when we we had dinner with her, and all we talked about was type one diabetes, and I was like, I've never felt more like understood in my entire life. And it was amazing, yeah,

michelle TBT1  
right, yeah? And, you know, even, like, even grandparents or extended family, yeah, you know, brothers or sisters, they also can only understand so much, right? So I, you know, there is a lot of isolation, because even family members have a hard time understanding it, yeah, you know. And until, actually, we just celebrated our 20th wedding anniversary, and this was the very first time my husband and I went anywhere without kids, because the grandparents, you know, they obviously, you know, want to be involved and do everything they can. But you know, when you have, when we celebrate our 10th anniversary, Isabella was in second grade, and you know, that was still a very turbulent time, yeah, so I couldn't expect my parents, who don't live near us and don't participate in our day in day out, to come and help take care of her, so we had to take her on our anniversary cruise. So, you know, anytime we traveled or did anything, we had to take the kids, because we couldn't put that on them, knowing that, you know, again, if you don't know the day in day out, you're going to feel lost. You're going to feel scared too. So we couldn't do that to them.

Nick Roccanti  
So so many people that we meet, too, they're like, oh, we'll watch the kids. We'll help. And it's great, right? And then they actually get into such a there was a funny story with your my sister, your sister, who she's like, Yeah, let the kids spin, and I got this,

Rebecca Roccanti  
and I don't sleep. Anyways, I got this. And then the moment, like, one of the alarm started going off. She's like, Rebecca, everything is beeping. I don't know what's going on. They because it's just scary, like the beeping noise, it's like, daunting. It's scary. And if you're not used to it, you're like, and then add in another child with it, so both alarms, if it happens to end up like that, where both of them are going to shift that same test. Yes, it's very startling for anyone. But

michelle TBT1  
absolutely, when I have Isabella, whenever her friends would come over to spend a night, because, you know, she got involved with dancing for diabetes and so on, having that other child with diabetes, I am like, I'm already on alert, but boy, am I double alert. This is not my child. I don't know what your you know rhythm is, or how you're charting. And so then I'm like, Oh, I really can't sleep now. So yes, and that's me with the experience. So absolutely it's scary for someone else. Yeah. And

Nick Roccanti  
then even just trusting people, right? Like, even if you had a babysitter, even if you have, like, your parents watch them, it's not like you can go turn off your brain, like you still got the alarms on. You're like, on alert, all those.

Rebecca Roccanti  
And I think that's really a big one that people don't understand. Like, if we're going to we when we do have the kids, because we haven't, 15% of time, we rarely do anything without the kids. Like, when we have them, we have them and we like, do it. But also, like, if there's an event that happens to fall when we do have the kids, I mean, we've had your daughter, Bella be. Maybe said before, which has been amazing. That has been, like, the only time we were, like, carefree. But just this weekend, his parents took the kids for two days of, like, trying to help us out and stuff. And it's fun, but then you see the alerts going on, and then, and then me, I'm like, texting Nick, like, Hey, do you know why Parker is high? And he's like, No, I don't. It's like, you know, it's just it, it's

michelle TBT1  
extremely difficult to let go. I mean, it really is. And so to put in perspective, Isabella, 17, we went on this cruise. I'm still getting the alarms. And there was one night she was going very low. And, I mean, I was just sitting there like, do I wake my husband up? Should we call his parents? Because his parents came and stayed with the kids and, and I thought, you know, I know they're on it. They know what to do. She's 17. I gotta let go. Yeah, you know, for my own sanity and, and I will tell you, when we got home and they opened the door his my father in law, was shocked. He literally looked at us and said, Wow, you guys look rested. Wow, you look different. I was like, yes, yes. I actually felt it for the first time. Yeah. So that's, you know, a whole other story that it it's a necessity. It's not a want. It's a necessity to have a little bit of a break, to be able to escape again, building on the community, you got Isabella to come and baby said, you have to be able to have that, that brain break, you know, because it is it anywhere you go, whatever you do, you're at work, you're getting alarms. That's your constant day, yeah? So, yeah,

Nick Roccanti  
it is. And that's one of the things that we have really had to embrace for ourself is that, like our whole again, people are like, self care and type one diabetes like that doesn't make sense. I'm like, yeah, it totally makes sense.

Rebecca Roccanti  
You need to make it because, yeah,

Nick Roccanti  
if you are someone with type one diabetic or a caregiver, you're gonna struggle with mental health and sad I believe and one we need to talk about it. We need to be supportive. We need to be encouraging, for all of us, but we need to hear the stories like what you just said about how important it is, because people need to know that, right? You need to know that, okay, it's not going to be perfect. When my kids go to my parents house, it was amazing. They spend the night that one night, they had them for two days. I know their blood sugar is not going to be perfect. It's going to be higher or a little bit more crazy than normal, and you have to be okay with that, yes, and it's but it's so hard to let go. And one of the hardest things that I think I ever had to do is that with the kids living in two separate households, I only have them 50% of the time when they're not with me, there is nothing I can do about it, yeah? And having to let go, Yeah, of that was the hardest thing that I think I struggled with, because you're like, all right, is the mom doing what she's supposed to? On top of it, waking up, checking the low all that. Why are the kids so high right now? What did they eat all there's all those things, and you just get build so much anxiety. And so one of the things that we had to really do, and it was a challenge for us, is they on the days that they go back, we have to actually turn the alarms off the Dexcom, yeah, and we still have the widget on our thing. Like, every time I open my phone, I got the Dexcom widget so I can see my kids numbers. So it's not like I'm completely blind to it, but I had to turn the notifications off so I'm not getting the alarms all the time, every time they went high, every time they went low. Because, one, I needed that mental break for that week. Yeah, because we know how hard it's gonna be once they come back, right? You need that mental break. And every time the alarm went off, it just increased my anxiety, well,

Rebecca Roccanti  
and it became such a bad spot for our relationship, like we were going to, like, couple therapy, and basically it was like an ultimatum, like, you guys have to make the decision to turn off these notifications, or you guys are going to lose your relationship. So you got to figure out, like, the balance between it, because when we had the notifications on, we didn't have the kids, then I'm going to Nick being like, what's going on? Like, blah, blah, blah. And then it's like him figuring out, when do I reach out? When do I not reach out? So it's just this balancing act that we had to do, and we've really had to figure it out. And when the kids do go away, I completely, I don't have any widgets on my home screen or anything like that. I just completely take it off, and then he still has it on there. But that was something I had to learn, like, with the help of a therapist, of like, especially when I got the shingles, because she was, like, before you were around, it was only Nick waking up for the alarms, because my fear was always, he's not gonna wake up for it. He's not gonna wake up. There's gonna be a low in the middle of night. He's not gonna wake up. And she had to, like, really drill it into me. Of like, no, like, before you it was just him doing it. Like, at the end of the day, you're your husband's support, but he is the main one managing it, managing the diabetes, and you're just there as a support system for him, which was huge for me, to like, learn and like re like, configure my brain to think like that for him.

michelle TBT1  
Wow. I mean, that's an that's something I had never thought of. And, you know, you just layered another piece of that anxiety I can only and and to let go. And that's your only option is to let go. Yeah, right,

Speaker 1  
like, so there's nothing I can do, right? And,

michelle TBT1  
yeah, I mean, as a parent, I feel for you that has to be very difficult, very difficult, but, and that's where I think, and it's so funny you you talk to my girls, and both have night and day experiences with diabetes because of a lot of Things we said, because of community isolation. So on, Alessandra pretty much went up until late teenage years, not having a community at all. Isabel, at a very young age, got involved with a community because that's when we were introduced to touch by type one. And the difference between the two is, because we were so isolated with Alessandra, I didn't know how to let go, yeah, I didn't feel like I could let go. So I was that Mama Bear, and never gave her a sense of independence to take care of diabetes and to be confident in her self care of diabetes, yeah, and then, because of a community, when Isabella was diagnosed when she was a toddler. Yet I had a very good friend I met at that time, still very good friends today. And she had her daughter at the age of, you know, five, six years old, poking her own finger. And I thought, Oh, my God, what? Yeah. And she's like, No, Michelle from young, you need to teach them how to take that responsibility. This is something they're going to live with for the rest of their lives, until there's a cure, yeah, and give them that confidence, and teach them that and you know, obviously you're supervising at that age. And I mean, mind blown for me, honestly. And so I started to end up, I hate to say this, but Alessandra went to middle school not having once poked her own finger.

Rebecca Roccanti  
Oh, wow. So was there, like, a specific time that, you know, that changed that so, like,

michelle TBT1  
I remember the the school nurse and middle school, she's like, this is not she needs to be doing this on her own, yeah? And at that point, I was kind of offended, yeah, I'm like, what you know again, just completely on her, you know, and everything diabetes was on me, and I'm gonna take care of her, and I'm gonna save my child, and I'm gonna protect my child, and I guess just the worst of the mama bear helicopter parent. And when I was around other parents, in particular this friend of mine, Amy. Shout out to Amy SICA. She She did a lot to show me, no, let's do that. It's okay, yeah, you know. And if they make a mistake, it's okay, but let them grow up, learning and so creating independence like that. So that I know that? Well, whenever she is at a friend's house, or she starts going places that she's not around me, it's like, no, she's got this, you know, she's got this. And of course, phone, you know, she can call me, she can look at her pump and at least say, Mom, this is what I'm thinking, Yeah, you know, this is how many carbs I'm having. This is what the pump is saying, and this is how I feel about it, you know. So getting in her, involved in her care, so I think, you know, going back with your kids is, I wish I kind of would have known that so that I felt a little more confident to let Alessandra go and be normal among other kids and know that it's going to be okay, versus being so protective out of fear, yeah,

Nick Roccanti  
yeah. And even now, this is something that we're trying to do with Parker, because he's now at the age he's in middle school. He's sixth grade. He wants to go play soccer. He wants to travel for the middle school soccer team. And we told him, that's great. We want him to do that. We're fully supportive, but we need you to take a step up with your diabetes, and he does a fairly good job with he knows how to change his equipment and pick his finger and do all that type of stuff, but he doesn't do a very good job paying attention to his diabetes, and he's going low and all those type of things. I was like, Look, we want to trust you to go do this. I cannot be with you. 24/7, I'm not going to be there after school every day to watch your diabetes. You're going to have to show us that you can handle it, and we're going to have to trust you that you're going to be paying attention to what your numbers are. You're going to treat yourself when you go low and catch it before you go low, because you're going to be out there being active, playing soccer, yeah, but you have to build that. Responsibility. And even now with Evie, right? Yeah, we should probably see starting early, giving her more responsibility of and even now with the kids, uh, we'll tell them, Hey, give yourself, you know, 40 carbs for your meal. They do it themselves with their tandem, but they tell us, hey, this is how many units. It says it so we can double check, right? But they're the ones fully putting in at this point, even my eight

Rebecca Roccanti  
year old, I think it's really the lows that we struggle with them, that both of like, the alarms are going off, and we're like, Hey, did you know you're going low? And they're like, oh, no, we didn't know. And it's like, what? Like, sometimes I think Parker's at the age where he can feel his body like changing or fluctuating, but yeah, like, Evie, like, the alarm will be going off, and she's just like, oh, I had no idea. Like, it doesn't in her head. She doesn't think, like, Oh, let me look at it and see why it's beeping type of thing. So yeah, we're definitely at that stage right now that we're figuring that out too. The thing

Nick Roccanti  
that we know you as, what we think you're the most thing is for is the touch by type 1d box you started it. We actually have one over here that you can kind of show off, and your other baby, everything you know. We had Elizabeth on a few weeks ago, and we talked about it there, but this was your brainchild, right? Yes. And so tell us about how this came to be, how to get started. And then even, how did you get involved with touch by type one? Well, I'll

michelle TBT1  
start with how we got involved. Isabella was in first grade, and it was through the school nurse who came to us and said, Hey, there's a dancing for diabetes. And I was like, oh, you know, what's that? Didn't know what it was. And it was their 13th annual show, and this was the first show that Elizabeth and Kelly said, you know, why don't we get some kids with type one diabetes, living with diabetes, to do a performance? And so Isabella joined. She was one of maybe five or six little girls, and yeah, so she was there from 2013 on, and that's how we started getting involved. And I just love the passion I saw from Elizabeth. You know, when you yourself are touched by type one, when you're affected by it, you know, there's a different component there. It's more than just an organization. It's more than just a program. There's that passion and that commitment to service, because you know what you're going through, and you know the importance of community and to give back. So that's contagious. And so I definitely felt that joined the board, and then from then on, we started growing other programs. And I remember, I was actually at a walk for Seminole County, the school board. And I don't Elizabeth and I, we were just talking again, Isabella was probably like, third grade, third or fourth grade. And we were like, you know, how do we let the community know that we're out there? Yeah. And I said, you know, how do we let the community know about us, and just to create a bridge for everyone who feels isolated? And I thought, Well, why don't we have kind of our own little welcome version, or, you know, something to say, hey, there's a community. And most importantly, hey, you're not alone. And so got together with some other members of the community, and we sat down, and we were basically, basically the D boxes, like, what do we wish we knew when our lives were turned upside down? You know? Because, I mean, I have no medical background, and I have a little baby, my my world, my daughter diagnosed, and I'm sent home, and it's good luck, yeah, and I, I mean your loss, and it's one of the worst times of your life. So we were like, Okay, what do we wish we knew? What are tips and tricks? What are again, with our experiences? What are the best products out there? What are the best resources out there? How can we let others know about you know, for example, my girls loved diabetes camp and the impact that's had on them. People don't know that these things exist, yeah. And so I thought, You know what? And we're gonna be just very forthcoming, open arms, and we're going to tell you what works kind of thing. So then I remember that we went to a friends for life conference, and I that's what I did. I went to the different companies that we knew that we products tried and true, is what I like to say, Yeah. And it started building up from there, and then when we would look at it from A to Z, well, what's missing, you know? And so again, carb counting, you know? I mean, isn't that one of the biggest things? Like, oh my gosh, I don't know what I'm doing here. What are good options? How do I balance out a meal? And so on. And the

Rebecca Roccanti  
fact that you're carb counting and not sugar counting, which blew me exactly, that

michelle TBT1  
you're looking at total serving. Yeah, you know absolutely things that you've it's always been there, but it's like, wow. Now, how do I actually read this? How do I use this? And so got with a CDE nutritionist, and together created a brochure. So again, from A to Z, all these different topics, all these different components of life. With diabetes, we just created it, put it in a box. First thing, whenever you open it, it says, you know, the most important message is, you are not alone, yeah, and you know, we that's what we really want to convey. You are not alone, all your questions, all your heartaches, all the support, all the whatever it is, and that emotion, you know, that spectrum, yeah, we understand. We know what you're going through. Let us help you on this journey. And it is a journey, you know, because even this is that diagnosis, it's what I believe. It's within the first year, I have to look at what the parameters are. But within that first year of diagnosis, you get this kit. It's free. I love that. It's free. It's mailed throughout the United States. We have a Spanish version, and we also have gotten international requests, yeah. And so we thought, okay, what can we do? You know, we don't want anyone to be left out incredibly so there are a lot of countries out there where really there are no resources, there is no community. There is one family in particular that I know in Ireland, and that girl is joining our dancing for diabetes via zoom almost every year, and joined in on outreach events that we had over the internet, because they literally knew nobody had nobody, and I think they would have to travel very far just for care. So then we created the digital version. So you know, it doesn't have all the goodies that you get in there, but all the very important information is in there. So it's a real source of pride. This program for me and

Rebecca Roccanti  
Elizabeth said, It's your personal hug to everyone. Yeah, that's

michelle TBT1  
it. Is it, is, you know, as a it's for adults and kids. We have two different versions. So you know, diabetes isn't just about kids, and we understand that. You know, my girls eventually grow up into adults. There are many adults who are diagnosed, you know, I know I'm not out of the blue, so I say, you know, my son, he's 13, and thank goodness, doesn't have diabetes, but I know that I could be diagnosed with type one at any age as well. So it appeals to all ages. Something in there for everyone. And you know, that's this. This is a passion project, and very proud that we're able to reach out to so many people. Yeah, so

Nick Roccanti  
special. We are so blessed to know you, yes, and we know that everything that you've done for touch by type one, your daughters are amazing. I know you shared your beautiful daughters my best. It is so nice to have you, and we're so happy that you came on this podcast with us. Now we do have a little treat. This is not the end of the episode, because there is going to be a part two, because now we are going to get the chat with the daughters. You probably heard them talking a little bit during this, and us looking over because they've been sitting over there, but we are going to do a part two and get to kind of hear their side of the story. But they are such amazing girls. And I said, Bella, has we? She's babysit for us. She has modeled for Palmr, yes. And is amazing, an amazing job. Thank you. We just were so happy that you were able to come on and just share what you did. And, man, it's amazing.

michelle TBT1  
Well, it's such a pleasure to be here, and it's also just wonderful to have you guys part of our community. You have done so much. And you know, I tell everybody about Palmr because I love the passion that I see in you too, and your company, and your dedication toward your kids, and your dedication of giving back and giving back to the community. You know, that's what it is. We're all together, and we there's the give and the take, and you know, that's a movement, right there. So thank you. Thank

Rebecca Roccanti  
you. Thanks for tuning in. We'll see you next time. Bye Palmr, fam, bye.

Transcribed by https://otter.ai