This is episode 53 of the Sugar Mama’s Podcast and the very first in our series for parents of T1D teens. I just want to encourage you that, even if your type 1 kiddo isn’t a teen, don’t check out! There are so many nuggets of wisdom sprinkled in throughout these episodes that apply not only to the teen years, but to the right here and the right now. Today my guest is Moira McCarty. Moira is mom to a now adult daughter living with type 1 diabetes. Shas been heavily involved with JDRF throughout the years, writes for a living and is the author of the book Raising Teens with Diabetes: a survival guide for parents. Today Mora shares not only her book with us, but also her experience navigating the teen years as a type 1 mom. You’re going to enjoy this chat very much.
Buy Raising Teens with Diabetes on Amazon!
PRODUCT FEATURE OF THE WEEK: Get your own personal diabetes manager with your very own Alexa!
This is episode 53 of the sugar mamas podcast. And the very first in our series for parents of T one D teens. I just want to encourage you that even if you're type one kiddo, isn't a teen don't check out. There are so many nuggets of wisdom sprinkled in throughout all of these episodes that really apply not only to the teen years, but to the right here and the right now today, my guest is Maura McCarthy. Mora is a mom to a now adult daughter living with type one diabetes. She has been heavily involved with JDRF throughout the years. She writes for a living and is the author of the book, raising teens with diabetes, a survival guide for parents today. Maura shares not only her book with us, but also her experience navigating the teen years as a type one, mom, you're going to enjoy this chat very much. Let's get started.Katie:
You're listening to the sugar mamas podcast, a show designed for moms and caregivers of type one diabetics here. You'll find a community of like-minded people who are striving daily to keep their kids safe, happy, and healthy in the ever-changing world of type one. I'm your host and fellow T one D mom, Katie Roseboro. Before we get started. I need you to know that nothing you hear on the sugar mamas podcast should be considered medical advice. Please be safe, be smart, and always consult your physician before making changes to the way you manage type one diabetes. Thanks. I am here today with a Maura McCarthy, and I'm just So excited to talk to her. and Maura, I'm just going to go ahead and let you introduce yourself. Tell the listeners who you are and tell us what your connection is to type one diabetes.Moira:
So I am a diabetes mom, my daughter, Lauren. 30 years old and was diagnosed almost 25 years ago. so we've been around the diabetes world since, before there was rapid acting insulin and steady, long acting insulin, long time.Katie:
Well, yeah, you said She was five when she got diagnosed.Moira:
She was six. So right after her sixth birthday.Katie:
more. You are also the author of a really amazing book that I have had the pleasure of reading. It's called raising teens with diabetes, a survival guide for parents. So I have more on today to talk about the book. Since this is part of our teen series, because I really think if you are getting ready to have a teen with diabetes, or you are in the throws of raising a teen with diabetes, it's a book that you need to have in your library. So would you tell us a little bit about the book and just, what was your motivation and inspiration for writing it?Moira:
I am a writer and author by trade. That's what I do for a little. And when I was going through the teen years with Lauren, I was desperately looking for books and articles and other things to help me and. W I didn't find much. And what I did find just didn't match up to what I was experiencing in my life. And so I kind of asked around a little, I happened to know a lot of lead diabetes people, and it struck me back then that this transitional period was a time that was very. Under understood. I wouldn't say misunderstood. I just think that we're really, we were really good at taking care of children and we were getting good at taking care of adults, but that in-between phase the teen years there wasn't a lot of advice. And so being a writer and a researcher, I thought, well, I'm going to look into this. And I was lucky enough to sign on two amazing medical editors, Dr. Jake Kushner and. Unbelievable Dr. Barbara Anderson. Who's one of the best teen diabetes psychologists in the world to kind of guide me. And then we work together. I sort of led with my experience, um, did research and then bounce things off them. it, it was really valuable. It's kind of funny because Lauren, at that time, the last thing she would do is read a book about teens and diabetes. And years later, she read it and she was like, yeah, Wow, this really makes sense. And it really pertains to me. I'm like, yeah, no kidding. But anyway, that's what led me to it. So I was lucky enough to find a public who wanted to take it on and, um, get it out there and make a difference. I think.Katie:
So you actually started writing it when she was a teen and, or did you write it after she was kind of done with all that because you wanted to have parents wanted parents to have a resource.Moira:
it was when she was off to college and we had sort of been through the years. I'm a big believer in, you cannot write about something with knowledge and understanding and the ability to research. You've been through it. And so had I written this when she was 12 before the. You know what hit the fan? I probably would have a different view because I think most parents who have kids diagnosed young have a phase, whether it's nine or 10 or 11, where they think they are the masters of this, they have figured it out. They are, I can trust them with everything and they're so mature and all of that is true. But then the 10 years come and everything mixes up. After kind of going through it and not being able to find resources is when I decided to try to create a resource.Katie:
that was something that really stuck out to me in the book is that you talked a lot about that, about how you can have this shining star, type one diabetic child as a 7, 8, 9 year old. And then all of a sudden the pre-teen and the teen years hit and everything just goes insane. And I'm sure that's not always the case. Right. And I'm sure there's some, model teens out there who handle it all. Well, For the most part, you kind of prepared parents by saying like, look, what you see now is most likely not going to be what you see during the teen years. so get ready.Moira:
Well, you know, I don't think Lauren, my terrible diabetes is. And daughter, my first daughter is four and a half years older, and there were a lot of things about transitioning from a child to an adult in the teen years that are challenging and that kids struggle with in general. And so looking back, don't, it shouldn't be that surprising. I would say that the teen who doesn't have a semi difficult time is almost a unicorn. and I also would say that. Much, like, I assume that we had mastered this when she was 10 years old and that we were the perfect family and nothing was ever going to challenge us in diabetes. Sometimes if you think that the teen years it might hit later too, I don't wish it on anyone, but it is a lifetime. Yeah. Most everyone hits a period of struggle at some point in their life. I think. And so I don't think it's a bad thing, even if your team is doing well to understand the nuances of when someone begins to struggle with diabetes, because I think you can overlay them in almost any age, really.Katie:
I think in life in general diabetes or not, I think you're right. I mean, you're bound to have struggles. Everybody's bound to struggle with something and have a hard time with something. So, no matter where it hits, we should be prepared. I did want to re just read the list of the chapter titles for parents listening. Um, just so they can have an idea of what you kind of cover in the book. Cause I just feel like you did such a great job of really covering it. It all, I mean, I don't have a teen yet. She's my daughter who is the T one D is about to turn 10, so we're getting close. but you know, as I was of. Thinking, what do I want to ask? What do I want to ask Maura? And what do I want to ask? You know, the other people that I'm having on for the series, I started listing out questions and then I opened your book and I, I read the list of chapter titles and I'm like, oh, perfect. She covered everything. So I want parents to know what's in the book. So,Moira:
It's almost like I lived through it.Katie:
Yeah. it's almost, it's almost like you're yeah, you just lived right on through it. And I love how the book, you know, has your perspective as a mom, but then you pulled in the experts, right? The medical team and the psychologists. And, and so you really kind of hit it from all angles. So there's the physiology of the teen years. So what's going on in their bodies, why their insulin needs might be different. Why they might be acting a little crazy. there's diabetes in the newly diagnosed teen. And so, so that would be like teens that actually get diagnosed when they're in their teenage years, there is diabetes in the teen and diagnosed in childhood. So the opposite, if you're diagnosed as a younger kid and then are heading into the teen years, there's a tools of the trade. So kind of like tech and whatnot, um, that they can use. Chapter five is diabetes, the teen and family dynamics, then there's diabetes and friendships, which, gosh, I think that's just so important, diabetes and school, and then making the social life where. And then there's chapter nine, which I'm actually going to have Mora on for a completely separate episode on this chapter, because I've had a lot of parents ask about, about it. And it's the big D driving in diabetes. and then chapter 10 is the other big D drinking and diabetes. Then there's the taste of freedom. Then chapter 12 is burnout rebellion and other emotional challenges. Chapter 13 is depression and diabetes. Chapter 14 is transitioning to self care. So kind of launching them off into young adulthood. And then 15 is advocacy and The. teen with diabetes and 16 is letting them go. So I'm curious to know more out, what was your favorite chapter to write out of That list?Moira:
That was kind of fun. I haven't read the table of contents in a long time. Not bad.Katie:
No, you did a great job. Do you have a favorite chapter? What was your favorite chapter to write?Moira:
That's a really good question. I was trying to remember. So it might be interesting for you to know that non-fiction authors don't necessarily write their books in order. And what I usually do is write the most difficult chapters. First, the ones that freak me out the most, and then the easier ones. I kind of get into later and as you were just reading them, I was trying to remember it's kind of like childbirth. You've like, you know how you forget how painful it was now that my daughter's 30, I almost forget how painful all this was, which is a nice thing to know that you will someday. Right.Katie:
I think, the most challenging ones for me were, the burnout rebellion and other emotional challenges, depression and diabetes, I think the one I most enjoyed writing was about, friendships and social life, because that was such an important part of my daughter's life. That, and, and I think we found a lot of successes there even in our tough times, so that those are probably the ones I most enjoyedKatie:
well, that's good. So in your opinion or opinion, kind of overall opinion, what, what is it that makes managing type one so different in the teen years versus any other age?Moira:
I absolutely believe. And the first thing I ever wrote about these teen years was actually, I guess, Story on diabetes mind called teens and freedom. Freedom is their super drug. And, and in it, uh, I, it was when I had realized that my daughter was struggling and, the way that she described it to me just hit home. And that was that when we introduced freedom and free and free well into their lives, and that develops in us naturally. It's not as easy, you know, when she was younger, she just wanted to please me. And she just wanted to do what she should do because she's a good kid and all kids are good kids, you know? And so she would just kind of go along with everything. But once she got a taste of that freedom and what it was like to maybe not do what she had to do with her diabetes, it's almost like, they get addicted to it. And so in hindsight, I wish I hadn't put so much value in her preteen years on her ability to self manage her diabetes care. Does that make sense? In other words, we were putting her on a pedestal that we should not have her on. And I'll say to parents of. Children newer to diabetes now, like I know it seems crazy, but don't buy them alive pony. The first time they do a shop themselves, you know, those things are all good because it makes life easier to make. But I think that I made it too much of a success model for her. And so when you become a teenager and you want to sorta try to start doing things your own way, you can struggle with. You're disappointing, your parents, you're not doing what you should do, you know, if you're a hardworking kid. And so instead of. Saying, this is too much on me. The preteen tends to sort of hide their struggle and that's where lying about diabetes often comes in because it isn't that they want to lie to be bad. This is why I say diabetes lying is different than regular lying. it's that they don't want to disappoint their parents. They don't want to face that they're may not be doing things the way that they will. Expected to do it. And, um, it's very natural. We, I think we want our children to go out and make mistakes and learn how to live their life within a safe boundary and diabetes adds a whole nother world of those things for them to, to challenge them and for them to worry about and feel bad about and do the wrong way and not want to admit they do it wrong and parents getting nervous about it and all that. So it's just a tough time. 'cause it's one thing to transition a child to go off and live on their own in any case. But when you have a chronic illness that takes a lifetime of constant care, it's sort of an added layer, right? So I think that's it. I think it's, um, the introduction of freewill into their own schools and we want them to have free, will we just have to help them get through to the point when their frontal lobe catches up with their freewill theirselves. Right.Katie:
Did you feel like, you know, once you kind of realized that, oh, she might've been hiding some of her struggles, did you kind of have to step in and, and help her more than you maybe were even when she was 8, 9, 10 years old?Moira:
what I had to do, she's a very independent person. And what I had to do was create a way. The way that I really found out that things were bad with her, which I say in this article is she literally went into DKA and I had no idea that she was not taking care of herself. Um, she would yell to me from the other room. You know, my blood sugar is 117 when she showed me after the fact, when it all came true to, to light the things that she did to hide it from me, I was like, gosh, if you use your evil powers for good, we'd have world peace, you know, like taking. Taking a meter and turning it on to a past number and sticking a used strip in it and showing it to you. Wouldn't it be easier to just check your blood sugar and know what it is, but teenagers are teenagers. And so what I had to do was I'm a strong believer in not letting diabetes stop her from doing whatever she wanted to do in her life. So I felt like. And this is where I started to see that there weren't a lot, there wasn't a lot of good resource for me. I felt like shutting down her life was not the answer that if I shut her down and I had to do everything again, and she couldn't go off to her sports practices and go up to student council and go to sleepovers and all that, because I was on top of her all the time, she would not continue moving forward to independence that, and so what I had to do was set up a system so that. I knew she would never go into DKA again. I also had to change my expectations of what she was capable of for a period of time. And except that for her long-term health and success and happiness in life, diabetes might not always be the number one thing on her mind that she might not always do it perfectly. And that was super hard for me. Wrap my head around and accept, but I began to understand that I had to and looking back now, I think, I mean, I wish we never went through it, but I think we made the right choices. And I think that. Locking it down and changing her life and saying, you can't go anywhere. And I have to see your meter every time, blah, blah. Wasn't the answer. So for us, it was sort of intervention so that she wouldn't end up in a dangerous situation again. while she works through what she had to work through to get to be independent, notKatie:
Yeah. So, I mean, in, in essence, you, and I'm not saying this as a bad thing, but like you kind of had to lower the bar for her a little bit, like not expect So much from her. Just kind of, we need to keep you out of the hospital. Like that's goal number one, right. You need to be, safe, medically.Moira:
I'm going to tweak that a little. I had to lower things for me, not her. And that's because every parent feels this way. If I could keep her A1C at 7.0 or lower, always, I would be the happiest person in the world. But through this struggle, I had to learn that you're not just raising an A1C. You're raising an emotional being. You're raising an intellectual being, you're raising a social being and you're raising a physical health being. And I think sometimes because we worry so much about diabetes and what it can do to our kids, we tend to put the diabetes first. And what I learned was. It doesn't always have to be first and, and a wonderful endocrinologist who my daughter ended up with after we, we had a struggle for a while with a couple of them was the first one who kind of, it was an adult endocrinologist and he was the one who said to me, You got to just let her figure this out. She, if you, if you continue staying on top of her and don't let her do the things she wants to do in life, she's never going to get to the place she wants to be. And I actually had dinner with him a few years ago. He was the one who said to me, she was taking terrible care of herself and was going to college 500 miles away. And I said to him, Would you send a child with her A1C to college, 500 miles away. And he said, oh, I knew they checked SATs and actsh, but I didn't know, they checked A1C is, and I'm like, okay, let me rephrase this. Would you let someone with her lack of attention to her daily diabetes needs go 500 miles away to college. And he said, well, I've devised a test. To admin. I can administer it now to see if she's ready. And I said, please do. And he turned to my daughter and he said, do you want to go to Washington DC to college? And she said, yes, I do. And he said, mom, I've completed the test. You need to let her go. So she did great in college. So a couple of years ago I had dinner with him and I said, how did you know, how did you know that she was going to succeed? And he said, I bet on the odds. And the only thing I did know was that if you didn't let her live her life the way she wanted to live her life, no matter how she was taking care of her diabetes, she was never going to get better with her diabetes. The only, the only hope was to let her live her life. Anyway. He was right. It takes an incredible leap of faith and it turns your hair gray and red wine, you know, is tempting. But, it's one, I I'm really proud of myself. I think that, I think it's one of the bravest things I did as a parent to let her experience some of the struggles she had to struggle to get to be the adult who that she is now. Right.Katie:
Yeah. I can't, I can't even imagine. I feel like I'm so far away from that time, but I know it I'm going to blink my eyeballs and we're going to be right in the same place that you were. but yeah, I, you know, I try to my mantra at least with Sarah now, and we, you know, we haven't even really hit any major, major, major hurdles, but. I always try to say yes to whatever it is she, she wants to do. I mean, within reason, you. know, within reason, but I, I feel like if she asks something reasonable about, you know, doing something outside of The home without me or whatever it may be, you know, I try, I try my best to just say yes, and then we'll just figure it out, figure it out later. Cause I don't, I don't want her to ever think that her diabetes is gonna, you know, keep her from. From being the reason why she can't go off and do something like what, whether it's a sleepover birthday party or whatever it might be. So that's great advice. So I like hearing that story.Moira:
the thing I used to say to myself is ask myself what my answer would be without diabetes. And that always should be my answer. So like, mom, I want to go to a co-ed slumber party in ninth grade. No, that has nothing to do with diabetes. You're not going to a co-ed slumber party, you know, but I want to go to a slumber party if she didn't have diabetes, if I'd say yes, then I'm going to say yes without diabetes. There's there's always a solution. And I remind you that I raised her before the. Or CGM. So there was always a solution. Then there's always a solution. You know, you just have to find it and you have to, you have to be comfortable with it. I said to him, mom, a year or so ago, a mom called me and asked me to help her figure out how she was going to let her child do something that scared her as a mom. And I said to her at the end, you know, I really think the most loving thing a parent can do is put aside their own fears for the sake of their child's success in that. You know, a lot of the things that we want to stop them from doing are because of our own worries, And, and most things, I can't think of many things that you can't do with diabetes that you could do without diabetes. You know what I mean? So we found the solutions and even when she wasn't taking care of herself, she did all the things she wanted to do in life. All of them.Katie:
I'm curious to know, cause T the teen years are such a time. I mean, you know, to generalize, but it's really pretty much true that, you know, it's such a time in a kid's life where they really. It's not that they don't love their parents, but they don't really want to have a whole lot to do with their parents. Like it's much more about friends and who my friends are and all that stuff. So what would you say, you know, if you could kind of sum it up, what do teens need from their parents during this time in their lives?
Hey there it's Katie. I wanted to pop in and share the product feature of the week with you. I mean, it goes without saying that the true product feature of. Is Maura's book, raising teens with diabetes, a survival guide for parents. And I will definitely put a link to that in the show notes where you can find it on Amazon. But I also wanted to let you in on a little secret, did you know I have a personal diabetes manager? It's true. Her name is Alexa. And she is a lifesaver. Alexa can set pre bolus timers for me. Tell me how many carbs are in something. Add vital diabetes, groceries to my shopping list, like juice, boxes, and cheese sticks. She can remind me to do things like call the insurance company to discuss a coverage issue. Alexa does all this and so much. Seriously. I love my Alexa, if you are totally confused. And Alexa is also known as the Amazon echo smart speaker. If you don't already have a smart speaker sitting on top of your kitchen counter, I highly recommend getting one. I am all for anything that will make our lives as parents of type one diabetics easier. Be sure to check out the show notes where I will leave an Amazon affiliate link, where you can get your own. All right. Now, back to the.Katie:
So what would you say, you know, if you could kind of sum it up, what do teens need from their parents during this time in their lives?Moira:
So I really believe looking back that diabetes or not. When they're small children, they don't need to feel the security. I mean, they always need to feel our security, but I think the teen years are the years that they most need to feel that we're there for a safety net, but they need it to be a safety net that isn't like blinking in their face all the time. And so they need to know that we're there for them. And I really think that. There's a fine line between watching their numbers and not watching it all. But I think that they need to have a little autonomy, which is more difficult now than it was when I raised my daughter, of course. but I think they need autonomy and I think they need to know that we're never going to punish them for their diabetes and that if they come to us and say, You know what? I haven't taken insulin in two days. We're not going to get mad at them. We're going to help them turn it around and that they feel safe coming to us. And just saying, I haven't bolused at lunch for a week because I just don't feel like it. And then we can help them figure it out. And so. Trying to be non-judgemental and my daughter would say to me, yeah, but you know, your eyes are saying something different moms be like, well, I'm trying really hard driving, you know, but that's what I would say. Um, there there's a tendency to, to want to get, get them, to do all their diabetes on their own. And I think that's good within reason. I think that there should be a, there should be a check-in point every single time. That you know, what's going on in your child's life with diabetes, you don't need to know every little thing, but you know that you know where things are and you can give them a little advice. So that, that would be my advice is kind of giving them space, but once a day, at least, you know, Kind of checking on things just so that they know in their heads that you're going to catch it. If they go too far, if they're struggling and they also may just do what they have to do. Cause they know you're kind of checking in and, and when they don't, you know, you can have an honest discussion. I mean, before I had sort of set those parameters with my daughter, when she was lying to me, I had like, An Excel spreadsheet. That was color-coded with her numbers, that I would base her Faisal and bolus amounts on that. Half of them were made up numbers once she admitted it to me, you know? So the truth is always better. The truth, no matter what it is, the truth is better. So if there's any way you can just drill that in.Katie:
Yeah. I always, I try to, and this might not even be the best approach, but like, if, like for instance, even just this past week, I've noticed that at like 2 45, every single day, my daughter's number starts to shoot up like PR pretty significantly. So, and she's taken a break from her pump Right. now, so we're back to injections. So, um, What is happening here? Like, is this her Bazell, is her basal dose wrong or is she sitting around? Cause that's right around like dismissal time at school, like, or she sitting around with her friends and, you know, just eating Skittles or whatever. Cause that's what she takes for her low snack and stuff. So I, you know, I kind of let a few days go by to see the trend and sure enough, every like three, four days in a row, you know, 2 45 boom to the roof. And so I asked her, I said, I really, I have noticed something going on with your graph. I said, I do not care what the answer is. I'm not going to be mad at all. I said, I just need to know. So I can know what to do, like how we can move forward and treating this, I said, are, you know, are you around 2 45? When like school's winding down? Are you like sitting around with your best friends and munching on your Skittles? Because she's told me before that, like she gives Skittles to people that, you know, and I'm like, and I'm like, that's fine if you are. I said, I just need to, I just need to know, like, do we need to change your basal rates? I don't want to, I don't want to make your basal rate go up and then you're going. The rest of the time and you know, all this stuff and, and, you know, so I try to, I try to really reinforce, like, I really don't care what the answer is. I just need, I need the information so I can base a treatment decision on that. and she told me she wasn't, she wasn't eating Skittles, which you know, who knows that that could not be the truth, but I was like, okay. I just, you know, trusted her and moving forward.Moira:
There are so many good things that you just said and what you're doing. Right there. You should feel really good about yourself. The first is that she's on a pump break because I truly believe in body autonomy and that after the age of five, Even before that maybe if they want to take a break from a device, they should take a break from a device, including a CGM. I, we, we were all fine before. I love them. I am the biggest fan of technology, but you can be fine without it. And you're showing your daughter that if she wants to take a break, it's no big deal and she can take a break. And I know how hard that is because I love technology, but my daughter takes breaks all the time. So good on. That's really good. The second thing is the idea, the nonjudgmental, because I doubt that she's lying about it, but even if she is, you're sending her the message that she doesn't need. And so maybe if she was maybe next time, she won't also gets kids, blood sugar spike at different times of day for a million different reasons. You know what I mean? Who knows? But I think that sounds phenomenal. And that is if I had been that way, when my daughter was longer, was younger. I wonder if we would have had as much of a struggle as we had. So yay. You. Yay.Katie:
Well, thanks. I definitely have my days and mess it up and say things. I probably shouldn't, but I feel like I did well on in that certain circumstance, in that particular instance. so I want to ask you just about, you said that the burnout and depression chapters were probably the hardest for you to write, but maybe just give parents some, some advice, some words of encouragement. Like if they suspect. Burnout or depression and their teen with T one D what do you, what do you recommend that parents do?Moira:
So the first thing I would say is parents need to watch their own burns. First and foremost, because my daughter and I kind of both hit burnout at the same time. And I probably, if I had paid more attention to how I was feeling might have realized that I was really getting burnt out. You know, I was an overachiever diabetes parent, blah, blah, blah. And that it, you know how it is, it's it can just crush you. And so. It's like the old silly airplane thing. Put the oxygen mask on your own, on your self first. So if you have cut everything out of your life, but diabetes care and work, get things back into your life, even if it doesn't feel right. Even if you feel bad, go out for those walks, join that book club, join your tennis group, whatever it is you do take care of yourself so that you can take care of your child. Should they hit burnout? That's my first piece of advice. The second one is be proactive with your kids. Tell them, they may have feelings. Like they may want to skip something they may want to lay about something mean they may not want to bull us for a meal and tell them that if they share that with them, Everything's going to be okay. You, you might not be able to make them not feel their angst right away, but you will be aware and you will be able to support them, like sort of introduced to them that there's nothing wrong with those feelings that they're very normal. Now that's burnout. Depression is quite a different thing. And I would say that. The signs of depression are available on the internet everywhere. If you see signs of depression and your child with diabetes, I would a hundred percent prioritize treating the depression over, treating the diabetes. I'm not saying you don't treat the diabetes, but depression and diabetes are a really, really, really difficult mix. one of my best friend's children went through a couple of my best friend's children, went through it quite severely as teens and, um, It's a really difficult thing. And so I would say if I know the signs of depression, if you see any of them, talk to their pediatrician, not their endocrinologist and deal with the depression. First. Now my daughter never suffered from depression as a teen, but she did have anxiety and panic. So she had to see a therapist and she still does to this day. And when she was like, she started right after nine 11. And when she was like 11 or 12, she said to me, I think all the kids in my school should be in therapy. Mom, I'll be probably I'll shit in the world. Right. But don't be afraid to introduce them to having that kind of medical support because it also normalizes. To them through their lives. So model that mental health is just like physical health. It's not something to be ashamed of. It's not something to be embarrassed of. If you feel like you're struggling, talk to your parents, tell them talk, you know, talk to me. Or if you don't want to come to me, go to your guidance counselor, just know that it's okay. That it's no different than if you're you're limping in your life. If your soul hurts and your heart hurts, it's the same thing. So kind of educate your kids as early as you can, to the normalcy of that. Should it appear, be aware of the signs and be very, very on top of checking for signs of depression. That would be my advice.Katie:
Okay. Yeah, that's that's really good advice. I, I'm just curious. This is just random thought. Like when you said talk to their pediatrician about it, is that a conversation you would have. In front of the pediatrician in front of your child with the pediatrician, I guess there's probably more than one, right? Answer to that question, but I just feel like there's never a time where you're not there. They're so busy. So you could try to call, I guess you could relay the message to the nurse through them. So they would maybe be a little prepared before you got there, but what, what do you think about.Moira:
I would absolutely talk to the pediatrician without my child there first, share what your concerns are, share what your share, what your worries are, what the signs that you're seeing and ask them how they think you should proceed. And then they may say, Bring them in and we'll see them, or they may say I'm going to refer you to a therapist. And then the therapist would decide like sometimes I would go in with my daughter and some, most of the time I wouldn't, you know? so I would say, and the reason I say talk to the pediatrician instead of the endocrinologist, is that I'm a firm believer in everything except direct diabetes related should go through the pediatrician first, like treat it just like you would, if your child didn't have diabetes for things. Non-diabetes and then you'll know when. The endo in and say, you know, she's going on a she's going on an anti-anxiety mat. I need to know how that interacts with her insulin and things like that. and the, of course your CDE, they changed the name of CDs, your nurse educator, and your endocrinologist can give you advice around depression and diabetes. Right. But I would say go to the pediatrician, but I would discuss it first without my child. And then at let, let the experts lead you on how to deal with it.Katie:
Yes. Okay. All right. Yeah. Thank you for that. Yes. The CDEs did change their name and that was right after we died. We were diagnosed and they added more letters. I'm like, well, if anything, just take away a letter now it's certified diabetes care and education specialist. CDCMoira:
Yes. That's what the, that's it. Exactly. Yep. Um, so I know you've already spoke about it a little bit, but, or a good amount, but, you know, I, I, it sounds like you, you and your daughter definitely had your fair share of struggles throughout the teen years with managing diabetes and just navigating those waters, but, what was your own experience in terms of. Kind of coming out of it. Would it go and go in waves where you'd have like a, some good months and then some bad months. And then when do you feel like you kind of came out of the fog of it?Moira:
there were brief moments of hope, but I think it was a good three to four years that I was, that it was not the way I would choose it to be, but that I was being patient and letting her work through things for her. Everybody has a point. Hopefully everybody has a point where they sort of wake up and, want. Do things differently and for her, and I think there's different phases of that in your life too, which I'll touch on. But for her, it was, um, going to college and, you know, I was paying for her college and there's a really fine community college right down the road from her house that she could practically walk to. So what I said to her was college is a privilege, not a right, and in our house anyway. And. You are always going to be taken care of there and I'm going to pay the bills and do everything, but I expect you to come home with a decent GPA and in decent health. And it's up to you to define that. And I say that up to you to define it, because I think if I had given her an exact GPA, she had to have an exact A1C she had to have, she would have just barely tried to that. And what happened is she loved college. She loved learning. She loved. Life. And she didn't want to end up going to the community college down the road. And so she way overshot. So I always say she went away to college with a low GPA and a high A1C, and she came home with a high GPA and low C um, it wasn't all over that. And she would, she would go backwards and the way she describes it to this day, the way she describes it, Almost like the 12 steps of alcoholism and she'll feel herself checked. And our first job out of college, they had a lunch and learn the 12 steps of alcoholism. And she called me and she said, mom, that that's what I go through in burnout. But I recognize when I need. When I slipped the first way again. And so now I just take action, right? When I recognize the beginning. So I don't go all the way back to having to build my life up from the beginning. So she feels like, she feels like not taking care of your diabetes is almost like addiction and it it's, uh, it's a force that tempts her and she has two. Push away from it and work to not let it take her over. So I think that's an interesting when, when she called me and told me that I, I was like, oh, that makes really good sense. You know, because think about it. She doesn't have a memory of what it's like. To live without having diabetes on her mind. And so even though the irony is when you don't take care of yourself, you feel a hundred times worse. You're thinking, oh, I'm escaping diabetes. What a great feeling of freedom, you know? And that's what there she's, she was addicted to. So, these days, uh, she doesn't have struggles to that point anymore, but she has little phases in her life. And I actually, I was very proud of her recently because she was on a complete tech break and she went through a little emotional thing recently. and she called me, I was so worried about her, not about diabetes, just about other things going on in her life. And she said, mama, I want to let you know, I put my decks come back on because I know when I'm this sad. The last thing I do is take care of my diabetes. And I was like, oh my gosh, she took the step right from the beginning to make sure she was okay. You know? So I think she's learned, I, I think she's a solid adult. I hope knock on wood. I don't know if that answered your question,Katie:
Oh, yeah, no, it did. And I agree. It sounds like she's definitely come into her own and is, is, I mean, I think it's great that she can recognize, you know, that she's kind of slipping she's on that slippery slope of, of maybe coming to a point where she's not going to be taking good care of herself and she takes action right away. I mean, We want that for all our kids, for ourselves and for our kids to be able to recognize like this isn't good. and, I need to do something about it before it gets out of control. I think that'sMoira:
Well, and, and and think about. I struggled with weight gain for quite a period of time. I lost a lot of weight recently, but I'll, it'll always be a struggle in my adult years, apparently. And one day she said to me, when she was trying, when she was a teenager and she was trying, she said, Mom, I go to bed at night and I say to myself, tomorrow is going to be the day I'm going to check my blood sugar. This is for CGM. I'm going to check my blood sugar four to six times a day. I'm going to count my carbs. I'm going to bowls for my food and tomorrow's going to be the first day, the rest of my life. And she said, and then I wake up and by 10:00 AM, it's all fallen apart. Does that make sense to you? And I said, you just explained why weight Watchers is a billion dollar in. Right. That's human nature. We want to do better at taking care of ourselves and doing the extra things we have to do in facing the challenge we have to face. But sometimes it takes a lot of false starts. A lot of false starts until you get to the point and sometimes you have a few false starts later, and then you got to kind of get back on the program. So I think she's, hopefully she's learned that I think, but it's human nature.Katie:
Yeah. I try to stay clear of just in my own personal lives. And I have a, my older son has a little bit of a. Obsessive personality and in a couple of different areas of life. But, you know, for me personally, like I lost a bunch of weight when I was actually a teen. And so I feel like that has also followed me into adulthood of just, you know, the constant, like, thinking about that and whatnot, and, I have learned that for myself, I can not really be on any type of really restrictive diets, because as soon as I put all these limits on you can't have this and you can't have ass, you need to do this amount of things a day or whatever it may be. That's when it just, I just fail immediately. Cause it's too, it's too oppressive. So I feel like that's maybe. You know, you can kind of translate into diabetes management to where, of course you want to be doing your best and you want to, you know, you want to take care of yourself, but you probably don't need to be putting these extremely strict rules and regulations on your management. Cause I feel like you're probably bound to fail. And then when you fail, you're gonna feel shame and guilt and.Moira:
So one of the things I learned from her adult endocrinologist and which ties into what she said to me about waking up in the morning and having all these goals and then feeling like you failed is sometimes the best thing is for the teen and the endocrinology team to sit down and create a plan that the team feels that they can accomplish. And even. All it is, is to check their blood sugar when they get up in the morning and check their blood sugar before they go to bed at night and correct for anything during the day and make sure they're taking at least their long acting insulin and doing correction, even if that's all it is, if that's what they can feel success at, that's where they should start. And that was really hard for me because. Wait a minute. We don't normally check two times a day, but it was a temporary thing and it helped her remember what it felt like to have a successful diabetes day. And then she just naturally started doing more. And so I know that parents want to say, um, I'm tightening it down and, uh, making sure the share is on and I'm texting them every single time. But if your goal is, and this doesn't have to be your goal, this was just my goal. If your goal is for your child to grow. And go off and live an independent life. You have to let them make mistakes and scrape their knees and do less than you think that they should do and still get by and then choose to do more. And, and he was really good at guiding me to accept that. And that ties in with what you're saying. So she could wake up in the morning and look at all these things she should do and get overwhelmed and fail, or she could wake up and only check her blood sugar twice. And by the way, I don't think I onesies are everything, but in the six months that he had her do that minimal check twice a day and make sure she put her long acting in her body. Her A1C dropped from double digits to the low eightsKatie:
in six months. So, is the low eights. Perfect. No, but it's, it's perfectly acceptable within a time of struggle, you know? And, um, I think that really shows that in this day and age with the insulins we have. We can do a little less for a period of time with, within a reasonable doctors, you know, partnership with the patient and help ourselves, help them emotionally get back to doing more. Eventually it was very eye-opening for me. And it was, I I'm telling you, it was the last thing I ever would, would think that I would want my child to do, but I, I went along with it. He was right. No wonder he's called the best endocrinologists in the world. So.Katie:
So I want to ask you, well, well, first of all, I want to ask, do you have any plans to do another book or maybe a second edition of this book?Moira:
I really want to do a second edition of this book. And I had a couple close calls, the publisher who published it, went out of business. And I had a couple of close calls with a couple of publishers. So I'm still looking, um, you know, everything has changed when this book came out in 2013, uh, CGMs were new and not many people were using them. We were, but, um, share didn't even exist yet. And I'm fascinated. And a little bit concerned with what I see going on with parents and their kids, particularly in the transitional years with technology. And I really, really, really am hoping that I can do the same research and get some experts and learn a lot about it and figure out some solutions for people. Because I, I think that, you know, those of us who fought for technology. Fought for years in every way, not only for companies to create it, but for it to be covered and be accessible. And I think that it might be harder on parents now than it was without it. And, and the goal was to make it easier. So I'm really hoping that I can dig into that and learn some things and try to try to help people use it in a way that enriches their lives more. If that makes sense.Katie:
Yeah, wouldn't that be an interesting study to have a group of people using the CGM, uh, kids using the CGM, or I guess anybody and then a group of people not using it and just kind of have them w you know, whatever the official medical tests for like, wellbeing and peace of mind and stress levels and all that, to see how they compared.Moira:
Yeah. So I think that parents think they have more peace of mind now because they don't know what it, what it's like to trust without it. And I just feel, and I'm quite sure that if my daughter was diagnosed in the last couple of years, I would be a different kind of diabetes parents. So I don't mean it judgmentally. I think it's, I think it's what seeing numbers all the time does to the parent. And if there's a way, if there's a way we can get them to have, you know, we, I never, ever, ever, ever worried that my daughter was going to die in her sleep and I still do. That's because she grew up using insulins that peak all the time and was fine. Do you know what I mean? And so I know when she takes technology off that she's not in any more danger. I love technology for a lot of different reasons. And the only part of it I would like to change is the anchor on parents now, because it's really like you see, like when there's a Dexcom outage or something, like there's a lot of people who are really scared. And that makes me sad. Cause I, I don't think it's necessary fear, but I'd have the same fear of my daughter was new to it. So that's what I'd love to do in an expedition.Katie:
Oh, I love that idea. Can I tell you that when my daughter goes to recess every day, which is a 30 minute period, she loses signal on her Dexcom. Cause I think she just throws her backpack over here and then goes running off, which I'm so happy about, but it's like the best 30 minutes of my day. Cause I don't, I don't have any information and I'm just, I'm just so happy that I'm ignorant as to what's going on, which you know, I know. Nate sound horrible to a lot of parents, But it's like, oh, okay. I know she's at recess and I'm not going to see your numbers for 30 minutes. So there's really no point in looking.Moira:
But even if you took her CJM up for a week or a month, you wouldn't be ignorant. You wouldn't know every number all the time, but you would know enough. And so. I love technology. I could talk for an hour about the good events. So please don't anyone misconstrue that, but I would like to see a place where we bank, we vanquished the fear that has escalated with the use of continuous glucose monitors. And like the first time I heard like some of the alarms, I was like, no wonder these poor parents are so stressed out those alarms. Like the, you know what I mean? They go right to your soul. It's like when a phone rings at three o'clock in the morning and you're sure someone's dead. Right. It's just human nature again. And so in my dreams and I don't know this to be medically the right answer. So I'm just, capitulating. Sorry. Um, I think that spending six months to a year, Learning how to take care of diabetes without technology, and then adding it, maybe, maybe might give people that I think peace of mind is when you know that if that device breaks or the stuff doesn't get delivered, or there's an outage that your child's still fine. That's peace of mind. Peace of mind. Isn't I can see the numbers. So that's what I'd like to change for parents. They can for kids,Katie:
it's a silly dream.Katie:
no, I love it. That's a great dream. I can't wait to fall along. Well, I know that you are very involved in JDRF. uh, at least I've heard through the grapevine. So before we wrap up and sign off, would you just tell us how you're involved with JDRF and what you've done?Moira:
I was involved at a higher level for many years. You know, things are generational. You get older and people don't want you around as much. But, I was the national advocacy chair, so I ran the whole grassroots advocacy program as a volunteer. we helped bring that the big news last week about vertex and Doug Melton and the stem cells. That's because a group of volunteers. Through JDRF for stem cell research to be legalized. Like that is a, it's been a long time since we did it and it takes time for these, but that is a huge whim that we now will have a source of cells to treat everyone if, and when we figure out a way to do it without immunosuppressants, that's huge. And I'm so proud to have been a lead person. To make that happen just as a mom. I was the international volunteer of the year in 2007. They must have not had anyone else to pick, I now still help run the ride program. So I'm going to go back to death valley. And ride a hundred miles in October, which will be the 25th anniversary of Lauren's diagnosis when I do it. So I'm really looking forward to that. Um, I love JDRF because the cast a wide net, they fund a lot of different, research that no one else may fund and they don't always stay with it forever, but that's not because they don't believe in it. They fund it until someone else who has money will step in and fund it. And then they start with new things. And I really, really, really. Like that. And the difference in my daughter's daily care of diabetes since she was diagnosed almost 25 years ago is two different worlds. And almost every single breakthrough has at least some Jayda fingerprints on it. So that's why I liked them.Katie:
Yeah, I like him too. I'm just real quick, like the hundred miles that you're writing for, for the, whatever they call that, the bike of fun. That's probably not the name of it, but do you, you have to break that up. Like how long does it take you to ride a hundred miles?Moira:
first of all, once you, you don't have to ride a hundred miles. That's just the goal. You train, you train for as much as you can and you raise money and it's a lot of work to train for it. Um, and then that day you just ride kind of what you're in the mood for that day. Like it's not a race, it's just a super light. Fun chill. So if you get up that day and you only want to ride 15 miles, you still cross the finish line and get a medal. And you've raised the money. It's about raising the money, but, um, it's it's one day and it's not broken. you do stop about every 15 miles, but only for about five or 10 minutes to refuel yourself, you know? And it takes me well, I'm excited to see how it happens again, because as I said, I lost a lot of weight over the pandemic and I, I rode this fall with a JDRF group. It's the first time we've all been able to ride together and they were like more, you're like the leader of the pack. So I'm really looking forward to seeing. seeing. if I crushed death valley, but it's, um, and there are rides that are, I'm going back to death valley. Cause that was my first ride. So I thought it would be fun on the anniversary of her diagnosis to go back there. But there are rides for every type of mood and every type of ability. And if anyone's interested, it is the most fun it's from Thursday to Sunday, it's like grown-up camp for the weekend. The ride is like a celebration. Challenge. And, um, my friends give so much money even after all these years, because people are impressed that you take the time to train and attempt to ride. So it's a lot of fun when I did it, I said, I'm one and out, and this will be my 14th or 15th ride in 10 years.Katie:
Oh, man. Never say never.Moira:
You're going to.Katie:
Am I going to join? you? Hey, I would love to, I have a beach cruiser right now. That would be great.Moira:
There's a woman who does 50 miles on a beach cruiser. I mean, I would not recommend it. I would say, get a bike and like learn how to ride, but you can do a JDRF ride on a beach cruiser, not the whole hundred, but you could do some.Katie:
okay. All right. I can pack my little basket full of stuff and be on my way.Moira:
If you had a dog, then it would be even better.Katie:
My dog is 80 pounds. So I don't think he would fit in the basket. We would just be flat both of us flat on our faces immediately. That would be fun. Okay, I'm going to follow it. I'm doing the JDRF walk next year. Cause I'm so thrilled that it's going to be in person, which, I mean, I'm assuming they've, they've been hinting that it's going to be in person. So I'm waiting for that announcement because I just didn't do it last year. Cause I was like, you know what? I just I'm so sick of virtual stuff and I'm not doing it. but next year I'm, I'm excited to be a part of that. Well, thank you so much for coming on. Thank you for your time. thank you for sharing your book with us. I highly recommend that, parents of kids with T1 D of all ages go out and get it. Cause it's a really, it's a really great book. It has a lots and lots of nuggets of wisdom and practical advice in it, which I, which I appreciate.Moira:
Well, that is it for our episode today, Maura, we'll be back with us later in the teen series to discuss diabetes and driving. But until then pick up your copy of her book. Amazon, I'll leave a link in the show notes. All right. Before we end, I just want to give a huge shout out to all the listeners who have taken the time to write a review of the show. I love hearing from you, and I love hearing how this podcast has helped you and your family. Thank you for sharing that with me. Thank you for sharing that with others. It helps others find the show and it helps the podcast grow. All right. Last, I want to remind you that if you'd like to be a guest on the show or you know, of someone who would be a great. Let me know. I truly believe that if you are somehow connected to the world of type one diabetes, then you have a story to tell, and we'd love to hear it. You can reach out and email email@example.com. Thanks, you guys have a fabulous week and I'll chat with you soon. Bye.
Moira McCarthy was working toward her goal of being a world-class ski and adventure writer when her then six year old daughter Lauren was diagnosed with T1d in 1997.
Since then, Moira has served in lead International roles in diabetes advocacy: President of the New England JDRF, JDRF International Board Communications, Outreach and Development groups, National Chair of Advocacy for JDRF, ChairMom of Children's Congress, and was named JDRF International Volunteer of the Year.
She has also served as President of the Diabetes Scholars Foundation, on the board of DECA, on the board of The Barton Center for Diabetes Education and on the board of Insulin For Life, now one of the lead groups helping with diabetes disaster assistance. She is well known for her famed Gala gown worn in 2016 as a tribute to PWD.
Moira is the author of the blog "Despite Diabetes," as well as three books on raising kids with diabetes, including The Everything Parents Guide to Diabetes and Raising Teens With Diabetes: A Survival Guide for Parents, which was named a top book by The Lancet, considered the most prestigious medical publication.
Lauren, now nearly 25 years into live with T1d, is thriving despite some tough years, and works as director of Patient For Affordable Drugs in Washington DC, leading the fight for affordable insulin for all.
Moira, who thought on that day in 1997 that her career dream was over, won the Harold Hirsch Award for Ski and Outdoor writing in 2019- naming her the top ski and adventure writer in North America. Despite diabetes.