#1805 Keep It Cute
Diagnosed at 13 during a routine physical, Sara shares how confidence, tech, and a determined mom helped her thrive with type 1—managing injections, school, sleepovers, and teen life without missing a beat.
Companies that Support Juicebox
Key Takeaways
- Early Detection is a Blessing: Sarah was diagnosed with Type 1 diabetes at age 13 during a routine pediatrician visit with zero symptoms, allowing her family to intervene early and implement life-changing technology like the Dexcom right away.
- The MDI Choice: Despite the popularity of insulin pumps, Sarah successfully manages her diabetes with Multiple Daily Injections (MDI) using Fiasp and Tresiba because she prefers not to have extra devices attached to her body.
- Flexible Diets Over Restriction: Initial severe carb restrictions (like 30 carbs per meal) can lead to frustration and potential eating dysfunction; using proper insulin coverage for a normal diet is much more sustainable for a teenager.
- School Independence: To avoid missing critical instructional time and maintain privacy, Matilde waived mandatory school nursing services, empowering Sarah to manage her diabetes via text message check-ins.
- Parental Advocacy: Successfully navigating T1D requires parents to actively self-educate, seek out community support (like the Juice Box Podcast), and advocate for their child's normalcy.
Resources Mentioned
- Juice Cruise 2026: juiceboxpodcast.com/juicecruise
- Touched by Type 1: touchedbytype1.org
- Tandem Mobi: tandemdiabetes.com/juicebox
- Eversense 365: eversensecgm.com/juicebox
- Juice Box Podcast Private Facebook Group: Search "Juice Box Podcast, type one diabetes" on Facebook
- Integrated Diabetes Services: Consulting resource utilized by the family (Gary Scheiner / Tavia).
- Wrong Way Recording: wrongwayrecording.com
Welcome and Introductions
Scott Benner Friends, we're all back together for the next episode of the Juice Box podcast. Welcome.
Sarah Hi, everyone. My name's Sarah, and I'm a junior in high school.
Matilde This is her mother. I'm Matilde Fiddler, and I'm so grateful to be on the podcast with you today, Scott.
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Scott Benner If you're looking for community around type one diabetes, check out the juice box podcast private Facebook group. Juice box podcast, type one diabetes. But everybody is welcome. Type one, type two, gestational, loved ones, it doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box Podcast, type one diabetes on Facebook.
Scott Benner Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan.
Scott Benner The episode you're about to listen to was sponsored by Touched by Type one. Go check them out right now on Facebook, Instagram, and, of course, at touchedbytype1.org. Check out that programs tab when you get to the website to see all the great things that they're doing for people living with type one diabetes, touchedbytype1.org.
Scott Benner Today's episode is also sponsored by the Tandem Mobi system, which is powered by Tandem's newest algorithm, Control IQ Plus technology. Tandem Mobi has a predictive algorithm that helps prevent highs and lows and is now available for ages two and up. Learn more and get started today at tandemdiabetes.com/juicebox.
Scott Benner The podcast is also sponsored today by Eversense three sixty five, the only one year wear CGM. That's one insertion and one CGM a year. One CGM, one year. Not every ten or fourteen days. Ever since cgm.com/juicebox.
Sarah Hi, everyone. My name's Sarah, and I'm a junior in high school.
Scott Benner And somebody else is with us. Who else is here?
Matilde This is her mother. I'm Matilde Fiddler. I'm a Miami native, and I'm so grateful to be on the podcast with you today, Scott.
Scott Benner Matilde, did you make Sarah come on or did she want to?
Sarah I actually asked to come on.
Scott Benner Okay. Cool. Alright. Well, let's figure out why all this is happening. Who should we talk to first? Well, who has diabetes? I do. Sarah does. How old how old were you when you were diagnosed?
Sarah I was 13 when I was diagnosed. I was going into the summer of, I was in my summer going into eighth grade and, yeah, that's when I was diagnosed.
Scott Benner And now you're a junior? Yes. Okay. How would you say it's going when you think about your diabetes? Like, what's where do you think you're at?
Sarah I think I'm very controlled. I also put a lot of hard work to control my numbers, but I'm really lucky because I haven't had any other health complications come out of it. And overall, I'd say I'm pretty stable and I'm able to, like, live the life that I lived before being diagnosed.
The Diagnosis Story
Scott Benner Yeah. Okay. What do you remember about being diagnosed, mom? Like, how did it come on? What what what did you see first?
Matilde What happened was I took the kids because I have another daughter. So both of my daughters, I my other daughter is 14 and Sarah's 16 right now. I took them to the annual visit at the pediatrician, and it happened to be that that day, we were seeing a new pediatrician. And my daughter did the annual pee pee in the cup, and she came back, and she goes, your daughter no. She goes to me, let me do a finger stick. She did the finger stick, and she said immediately, your daughter has diabetes. And I said, what the fuck are you talking about? Like, shocked. Yeah. My daughter had never had one simp. Her blood sugar at that visit was two forty.
Scott Benner Okay.
Matilde She had had a bagel and, you know, prior to the going to the doctor. The reason I had moved that pediatric visit to that day is because both of my daughters were leaving to sleep away camp for three weeks in three days.
Scott Benner Sarah, did you go? No. I did not end up going. Okay. Wait. Do you remember that moment the way your mom remembers it?
Sarah I remember the same thing.
Scott Benner Yeah. Do you remember
Sarah being shocked? Going to the going to the hospital after and being really confused and nervous.
Scott Benner Confused and nervous. And, Matilda, are you married?
Matilde I am.
Scott Benner Okay. Did you call your husband right away?
Matilde I did. He too was super confused. He had to pick up my my other daughter, Sophie, and I took my daughter to the local. They suggested go straight to the ER, the pediatric Unfortunately, we knew the a nurse that has been at that institute for many, many years. So she immediately treated us like VIP. Mhmm. Immediately, they saw my daughter. When they checked her blood sugar, I think she was at that point let's call it, like, one sixty. Right? So they said they took us right away from there to meet the endocrinology team. And I was let me tell you a wreck. Like, I think about it, and I can't even believe. It was very emotional. But I wanted to come on today to tell you what a fabulous experience we had because I know so many of your listeners have had such rough diagnosis stories, and and they got so little support. And we didn't we did not have that experience. My daughter was taken by the endocrinologist. Immediately, they explained to us that she was in the honeymoon, you know, initially. And so and within two hours of being at that appointment, they put the Dexcom on her. Okay. You know?
Scott Benner How's it feel, Sarah, to hear your mom feel so emotional about all this? And have you seen that emotion from her before or since?
Sarah I haven't really seen that emotion from her since I was diagnosed. She always is super strong about it. Encourages me to be strong about it too. And I feel like a big part of me getting through this was because of my mom and all the help she gave me because she's, like, was kinda my she's still is my partner in managing this.
Scott Benner Yeah.
Sarah So I'm really grateful to her for that.
Scott Benner Do you have a similar feeling, like, when you think back on your diagnosis, or are you are you listening to her right now and thinking, wow. This is what it feels like to have a kid apparently.
Sarah No. When I think back at it, yeah, I got a little, like, upset because, like, in in the beginning, I was really confused on, like, on why me. Like, I've never had a health issue in my life.
Scott Benner Right.
Sarah Up until that point, I was, like, the healthiest person ever. So I was very confused why, like, this was showing up now. And I don't know. I was concerned about, like, if people were gonna, like, look at me differently. And, like, I remember, like, being concerned then, like, people were gonna think, like, I eat ate too much or, like, something like that because, like, there's a bunch of misconceptions with diabetes and stuff. Mhmm. But, obviously, there is, like, a difference between type one and type two.
Scott Benner Has that been an issue? Do you did you have friends or acquaintances that misunderstood your situation?
Sarah Yeah. Like, still honestly to this day, people ask me like, oh, like, you can't I mean, does that mean you can't eat sugar? Blah blah blah. Like and it gets it kind of annoys me. But I mean, honestly, it's not it's not really their fault because they just haven't been educated on the topic. So whenever something like that occurs, I take a moment to educate people.
Scott Benner Good. Okay. So you don't get upset, you just realize there's there's no way for them to know and you help. Yeah. Okay. That's awesome. Does it make you feel good, Matilda, to hear that she's having such a an even response when people talk to her like that?
Matilde I'm extremely grateful. I want you to understand and other parents to understand that that it's a very steep learning curve, and there was a lot of support. We had therapists involved from the get go. We had nutritionists involved from the get go to really help us with that steep learning curve and to give us that support that we needed so that our living life and enjoying life momentum didn't stop.
Insulin Management and Choosing MDI
Scott Benner Let's figure out how you figured all this out. So there's some education in the hospital, and then what happens? There's a is there an outpatient education after that? Do you go back to the hospital afterwards?
Matilde So what happened? Because she was so low like, her her a one c at that point of diagnosis was six point o. Mhmm. Her blood sugar, as we all know, two forty isn't that high. That's, like, on her you know, to get caught at that to be diagnosed and found out at know, when you have zero symptoms. Zero.
Scott Benner Yeah.
Matilde It's like a a blessing and and, like, like crazy how that happened.
Scott Benner That doctor's appointment was just well timed, really. Correct. Luckily. Yeah.
Matilde Correct. Uh-huh. And then, you know, they sent us home. They sent us home. They gave us the prescriptions for the insulin. They're like, don't use it yet until you need it. And, you know, so we got the insulin, the whatever at that time, I think of Humalog junior, and you're, like, staring at it, like, when am I supposed to use this?
Scott Benner Mhmm.
Matilde So what happened is she ended up getting, let's call it a month or so later, a tonsillitis. And they put her on prednisone. And that's when the party started. You know, the three hundred blood sugar. And so then we had to do the first time the insulin. I wish, and I think Sarah agrees with me, because they had us initially on a very carb strict diet, which in my opinion, can cause, like, eating dysfunction because she was on, let's call it, I think if I can recall, 30 carbs. Nothing.
Scott Benner A day?
Matilde Yeah. And we we we went we did that for, I don't know, let's call it, like, a month ish. It's a blur, but let's maybe max two months. And then finally, thank god, the prednisone thing happened. We had to introduce the insulin injections into start bringing that blood sugar down, and then she was super skinny. Imagine. And she's tall. My daughter right now is five nine.
Scott Benner Yeah.
Matilde And she weighs, like, less than a hundred and thirty pounds, you know?
Scott Benner Sarah, I have a couple of questions for you.
Sarah Yes.
Scott Benner This one might seem out of left field. Do you get tonsillitis a lot?
Sarah No. No? That was the only time I've ever gotten it. And also, mom, you said something about eating dysfunction. I just wanna make it clear. I've never had an eating disorder to those listening. And I think it was, like, 30 carbs per meal. I don't know about per day.
Scott Benner So it's interesting. The way you remember it, mom, is that her somebody told you to kind of restrict your carbs to go lower carb. Yes. Do you remember that time as particularly difficult?
Sarah Yeah. It was Yeah. Super annoying. Like, I had to watch everything I was putting in my mouth.
Scott Benner Right.
Sarah And honestly, like, looking back on it, like, I should have just been able to eat what I wanted and just given insulin for it.
Scott Benner Yeah. You didn't quite understand that at that point. And who gave
Sarah you that Honestly, what was what I don't I still don't see the purpose in
Scott Benner that. Right.
Sarah Like, what? I don't don't understand.
Scott Benner Who gave you that information?
Sarah An endocrinologist. The endocrinologist.
Scott Benner Okay. So let me ask you a question because you you said something earlier. A lot of people do this. They come on and they tell me how great their doctors are, and then they tell stories for an hour about how the information they got wasn't great. When you tell me that that you were lucky that you got started well, what does that mean to you?
Scott Benner When you think of a CGM and all the good that it brings in your life, is the first thing you think about, I love that I have to change it all the time. I love the warm up period every time I have to change it. I love that when I bump into a doorframe, sometimes it gets ripped off. I love that the adhesive kinda gets mushy sometimes when I sweat and falls off. No.
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Matilde It means to me that they gave her immediately the technology
Scott Benner Technology.
Matilde The true diagnosis. Like, there was no immediately, I knew my kid had type one. Like, how many times parents are like, I don't know what they had. They maybe they have this. So I knew right away her diagnosis.
Matilde She was introduced to to me. The Dexcom is life changing technology immediately on her body, plus I had the insulin. Now with what you're saying is true, the diabetic educator put her on that carb restrictive diet, which I agree. No good. That's where parents it's incumbent on the parents to educate themselves, and that's where you, Scott, are a blessing in my life.
Matilde I can't tell you the amount of what I how you changed the course of learning what you did with Arden and learning with the bowl beginning series listening to other parents and and type one people share their stories, that's how I learned.
Scott Benner Oh, I'm glad. That is lovely. I am so happy that you figured that out. But I wanna go back and just put a put a kind of a cherry on that other idea. You feel like you were treated well in the beginning because you got a firm correct answer as far as a diagnosis goes.
Scott Benner Someone showed you technology and didn't make you wait for it. That really is what you consider to be a great start.
Matilde Yes.
Scott Benner Yeah. Okay. Well, I I think that's valid by the way. I just wanted to, you know, I think sometimes people hear that and they think that, you know, they got some magical doctor who, you know, knew everything. But you're just saying, look, I just got a good firm, you know, foundation and a good start on all this.
Scott Benner Then you went off and found other information. So how long after her diagnosis did you think to yourself, I have to go find other information. I don't have enough to do what I need to do.
Matilde I would say very quickly. Initially, you feel very alone. Right? Because you're like and I was so grateful that I was introduced to other mothers in my area, in the Miami area, a group of three ladies. I could message them.
Matilde And one of the questions that I that I found so impactful that I or or realizations that I found so impactful was one day I texted a mom and I said, wait a minute. This is a disease that the goalpost is constantly moving. And she goes, bingo. Yeah. That was a hard pill to swallow.
Scott Benner Right. Right. Did not to think you couldn't just figure it out, write it down, and keep doing it. It that it was gonna keep changing. And did you pass that on to Sarah?
Scott Benner Like, as you learn things about it, how do you remember your mom bringing you back information, and were you looking for information on your own, or were you counting on her?
Sarah Honestly, I counted a lot on my mom. And I remember she started listening to your podcast, and she would tell me things about it, and we used some of your tips and whatever, etcetera. And that really started to help us. And also, I met the mothers that my mom was referring to earlier. I met, like, their daughters who were younger than me.
Sarah But it was nice to see that other people were going through the same thing I was, so that was really helpful.
Scott Benner Okay. So your mom brought you information and you found other people in a similar situation and made you feel a little more comfortable while but maybe while you were figuring it out, there was a a feeling that you could get to some sort of an answer because those girls were doing well. Is that the idea?
Sarah Yeah. Since I saw them doing well, I knew I was gonna be fine. And honestly, I was fine. So it it just brought a lot of comfort.
Scott Benner Okay. Awesome. And you use what now? You have a CGM, I heard Dexcom, but do you have a pump?
Sarah I use the Dexcom g seven and FIASP multiple injections and Tresiba at night.
Scott Benner Okay. Oh, so you're using pens?
Matilde Correct.
Scott Benner Awesome. And you've been doing that for how long?
Sarah I it was ever since I've
Scott Benner Been diagnosed.
Sarah Started using the injections Okay. After I had the prednisone.
Scott Benner Tell me why you don't have a pump.
Sarah I don't like having multiple devices on my body.
Scott Benner Okay. So just it's about real estate for you and not hanging more stuff?
Sarah Yes. Correct. And I'm doing fine with the injection. So if it ain't broke, don't fix it.
Scott Benner Yeah. Yeah. How are you doing? What's your a one c right now?
Sarah Well, actually, in my last blood work, they forgot to do my a one c.
Scott Benner How is that possible, sir? What the heck?
Sarah Yeah. I'm not really sure.
Matilde But on
Sarah the Dexcom, it says, like, about about 6.2.
Scott Benner Good for you. That's awesome. Do you have a lot of lows or protracted highs that you can't get down for hours at a time, or is that not your day usually?
Sarah Like, not really, but I want normally, when I have a high, I can get it down pretty quickly. Mhmm. It just gets more challenging when it's at night. If I've eaten something carb heavy or, like, that'll hit later in the night, that's when it gets a little tricky. Yeah.
Sarah So I have another I also have another insulin for that. What is it called?
Matilde Scott, I can't remember.
Scott Benner Is it the inhaler?
Sarah Come to I think it's something with an l. Lyonjev or something.
Scott Benner Loomjev? Yes. Okay. So you're using
Sarah It's an older insulin. Correct?
Scott Benner No. No. It's a newer one. Loomjev and Loomjev and and Fiaspora, the two faster acting insulins. Why do you have both?
Scott Benner Is it not that maybe? Lispro?
Matilde May I interject? Please. It's, the one she uses for nighttime, what and and I I have to think about the name.
Sarah Lantus? Novalin. Novolin. Alright.
Scott Benner Well, who set you up with that?
Matilde Integrated diabetes, which was also introduced to us by you, Scott Mhmm. Through the the, you know, the amazing Gary Shiner. I also use their services for when we need additional support and education and and normalizing. Yeah. We use Tavia.
Scott Benner Oh, sure. Oh, you know, I'm gonna see her in a couple of weeks.
Matilde She told me to tell you hello because we met with we talked with her yesterday.
Scott Benner Nice. Yeah. She and I are doing a private event together in, like, two weeks, maybe three weeks.
Matilde So she suggested let's say Sarah goes out to party, you know, and then she eats late at night and then goes to sleep. She suggested the Novalin because it's a slower acting insulin that doesn't have a quick onset and it takes a long it stays in the body longer. Mhmm. Am I saying is it the Novalin? Am am I right about that one?
Scott Benner I mean, you're asking me what you're doing?
Matilde No. I think I we don't do it that much. Okay. It's occasional. You know, because she doesn't go out at night all the time and eat late at night all the time.
Scott Benner So what did they give it to you for? Because it's
Matilde Because it's slower acting and it stays in the body longer. So if you eat, let's call it, like, a pizza late at night, it can help with her control. We don't do it all the time. Mhmm. But the cool thing with it is that you can get it at Walmart with no prescription.
Matilde It's super strange because it's an old
Scott Benner It's it's r insulin. Right? Novalin r? You That's what you're talking about? Regular.
Matilde Think that's what it is. Yeah. We don't use it that much, obviously. Look. We don't even remember the name.
Scott Benner But if you get a sticky hi, Sarah, you use that?
Sarah Yes.
Navigating School and Independence
Scott Benner Okay. Sarah, when your mom says going out to party, she means watching Disney princess films and eating Cheetos. Right? What does she talk to
Matilde about?
Scott Benner Yeah. Yeah. Are you in Miami?
Sarah Yes.
Scott Benner Oh, is it hard to live in Miami and be a kid?
Sarah No. It's great.
Scott Benner It's great? I was just there.
Sarah Really?
Scott Benner Last year and again this year, I'm taking a group of listeners on a cruise in June, and it goes out of the Miami Port. We're using a different cruise ship this year than we used last year, and the cruise company wanted me to see it. So I went and did a cruise with my wife right before Christmas. So we were in Miami for the night then went to the port and headed out and then came back that way. So I didn't get to see a whole lot of it but that's nice place.
Scott Benner So and I know people who have lived there. But the partying is is it's Miami. Right? Like, you're out. There's get togethers.
Scott Benner You've gotta kinda deal with things.
Matilde It's Yeah.
Sarah It's more like casual get togethers
Scott Benner Mhmm.
Sarah That sometimes go late. So if if I end up having I I probably end up getting a little hungry at the end.
Scott Benner So little meal. Yeah.
Sarah Yeah. I hear Yeah. Exactly.
Scott Benner When you're doing that. Okay. When you carry your stuff, how do you carry, like, a pen? Is it just in your purse or what do you do?
Sarah I have, like, a huge black no. It's not huge. It's this black pouch with a bunch of compartments where I keep my juice, my, Gevo hypo pen, and my main insulin
Scott Benner Mhmm.
Sarah And a little sharps box and just all my supplies, my alcohol pads, my needles, everything. So that's my pouch for school. And if I'm going somewhere nicer, I'll just put my stuff in a purse.
Scott Benner Okay. And you pre bolus your meals or no? What does the fiasse work fast enough
Matilde for you?
Sarah I can.
Scott Benner What does that mean, Sarah?
Sarah In the morning before school, it's I can pre bolus.
Scott Benner Mhmm.
Sarah At school, I cannot pre bolus. It's very difficult because I don't know what I'm gonna be eating.
Scott Benner Okay. And you don't wanna shoot twice. Like, you don't wanna give yourself a little bit, then figure out what you're eating and give yourself the rest? Or do
Sarah you Honestly, that might not be a bad idea.
Scott Benner Yeah. So what if you don't mind injecting, then I would pick an amount of carbs that you know for sure you're gonna eat, hit that as a pre bolus, and then when you settle on food, just put the rest
Matilde of it in.
Sarah That's very smart.
Scott Benner Thank you.
Sarah I'm gonna do that.
Scott Benner Alright. Try that. See how
Sarah that works. Have a lot of trouble keeping my well, not a lot of trouble, but I typically spike when I'm in school.
Scott Benner Yeah. Because you're probably bolusing while you're eating. Right? Yeah. Yeah.
Scott Benner Oh, that's a good see if that works for you.
Sarah Try it.
Scott Benner That's a tip that parents use for little kids because they never be it's similar idea. They little kids sometimes sit down and don't eat. And so people are like, well, I can't pre bolus because sometimes the kid doesn't eat anything or they take a couple bites. And I I ended up saying, like, years ago, like, there must be something, you know, they're gonna eat. And I remember mom saying, like, delete at least five carbs.
Scott Benner I'm like, well, pre bolus five carbs then. And then get the insulin on your side, get it moving, helping you, and then put the rest in later. That's all. Well, good for you. Well, I guess we're we're fixing the problem.
Scott Benner No other autoimmune in the family? Thyroid, celiac, anything?
Matilde No. Scott, my father did have diabetes. He was diagnosed in his, let's call it, late thirties, early forties. I always remember seeing needles, syringes, insulin in my home as a child, young, you know, teenager, but I never understood. I never knew anything about blood sugar.
Matilde I never knew even the range. I never even knew what insulin did. My father has passed approximately, like, five years ago, So I was you know? And he did pass from diabetic related complications that eventually resulted in congestive heart disease.
Scott Benner Mhmm.
Matilde My instinct because I would go with him to a lot of doctor's appointments, and I have, like, little memories that pop in my head. Yeah. Think my father had type one and a half. Can I confirm? No.
Matilde But it was like my father was an athlete, always exercised, always jogged, and so who knows? I will I'll never really know.
Scott Benner You're never gonna know. Yeah.
Matilde He was uncontrolled due to numerous things. The technology that it was available at the time due to his personality that he loved the wine, the cheese, you know, the meat, whatever, like, the stuff, the good life.
Scott Benner How how old was he when he passed?
Matilde 70.
Scott Benner Okay. Yeah. I mean, it's hard to know. Right? Like, if he if he was misdiagnosed or I mean, what was the management like?
Scott Benner Just insulin.
Matilde For him? Yeah. You know, I recall never did he ever in my life when we would go out to eat, never did he have insulin on his person. He would check the blood sugar at home in the morning and it at night. My father loved juice.
Matilde Imagine.
Scott Benner Like Fruit like, just fruit juices, orange juice, grapefruit, that kind of thing.
Matilde Juice. All the juices.
Scott Benner Just all the juices.
Matilde You know, which is like, hello, the worst thing ever. Yeah.
Scott Benner Okay. Hey. You talked about in your note about grief, and I was wondering, you know, was that for both of you or, mom, was it just for you? What was the what what happened? How did you work through it?
Matilde Yes. You know, as it relates to there definitely was grief for my daughter feeling because, you know, I don't want her I didn't want her to carry that responsibility and burden. Mhmm. So that is very difficult. But with that being said, I'm a person that I can be brokenhearted, super but I keep it moving, and I keep it cute.
Matilde I keep it moving, and I keep it good. And you I can be devastated, but I I get up, I do my hair, I go get dressed nice, and I'm like, that's how I am.
Scott Benner Yeah. Sarah, is that how you see your mom? Is it, like, surprising to you to know that she experienced grief after your diagnosis, or were you not even aware of that?
Sarah No. It's it's not surprising to hear now, but because it's true. I guess she was going through that kind of thing, but she did keep it moving and she kept it cute.
Scott Benner So And how about you, Sarah? Did you feel grief?
Sarah Yeah. I remember being a little sad.
Scott Benner Stuck to you for a while. What do you think helped it go away? Time or something someone said or did?
Sarah Maybe, like, time, honestly. Because when you first get diagnosed, it's just a big shock and, like, my mom spoke about earlier, it's a big learning curve. So once you learn about those things and I feel like a big part of this disease is trial and error.
Scott Benner Mhmm.
Sarah And you have to go with your gut a lot in this in this disease.
Scott Benner Yeah.
Sarah It's kind of like a number game, honestly. And maybe your doctor will tell you to stick to a specific formula, but I'm just gonna tell you right now, you can't always listen to your doctor. Like, this sounds horrible, but you have to do what's best for you as well. Like, if that means giving some extra insulin, you're gonna have to do it.
Scott Benner Yeah. You think maybe that's a starting point and they're hoping you'll figure the rest of that out? Or do you think that they don't know that there should be like, what's your experience been when you've gone back to your doctor and said, hey. Look. I gave myself more insulin here or I've changed my settings.
Scott Benner Do they generally seem supportive of that?
Sarah Yes. They do. But I'm in a different situation than some of their other patients because I think the normal how many times a year do I have to go visit their mom?
Matilde She, because of her well controlled numbers and and her responsibility, she normally only goes to the Endo now in person once a year.
Scott Benner Yeah. That's what our
Matilde We do the labs. They come to my house. I lay you know, I pay a little money, and the lady comes to my house and pulls her blood. And we do the diabetic educator appointments virtually
Scott Benner Mhmm.
Matilde For the most part. But Sarah's also a youth ambassador through breakthrough type one, so we see her endo, like, at events too. You know? Yeah. I have to tell you something, Scott.
Matilde This is the most important thing that I want you to to impart to the parents. You taught me what to do when you send your kid to school. Right?
Scott Benner Okay.
Matilde So when my daughter was diagnosed, the first thing she told me was this, mommy, I cannot be like this one girl that goes to my school that has a nurse walking behind her, carrying her book bag, and giving her snacks. She was like, I beg you. She was, like, petrified.
Scott Benner That that was her situation?
Matilde Correct. Yeah. So I was, like, scrambling. So I goo you know, I looked in your podcast, like, what to do in school. So I learned from you that when your daughter was a baby, I don't even know, second grade or third grade, you're like, forget it.
Matilde We're gonna handle this between my kid and I. We don't need the nurse. We don't need anybody else. We got it. So I said to myself, okay.
Matilde Immediately, when it was time for her to inject herself, I'm like, it. You have to do it. I'll text you. We'll text each other. You're going out?
Matilde Text me. Mhmm. Because the biggest thing that I learned from you, Scott, is that you cannot take away the kid from the classroom because they they miss instructional time.
Scott Benner Yeah. No kidding.
Matilde And the public school my kid was at at the time, the rule was if I signed up for nursing services, she would have to go to the nurse three times a day, in the morning, in lunch, and at night. I mean, you know, in the afternoon. Mhmm. Who has time for that?
Scott Benner Yeah. No. You you miss a lot of a lot of instruction that way and and it can you can easily just create a gap there. Sarah, the thing your mom's talking about is that when my daughter was in second grade, there was a prescribed time that she had to go see the nurse and it was in preparation for for eating. But what no one realized is she was leaving every day as the math lesson was being taught.
Scott Benner And it's just the the way the teacher had the day set up, she'd hand out the math lesson and just a couple of moments later, Arden would have to leave. A timer would go off on her phone. She'd stand up and leave. And Arden was missing the direction every day for the math lesson and she had fallen pretty far behind to the point where we actually we thought, like, I mean, honestly, Sarah, we thought she was just a little stupid. You know what I mean?
Scott Benner And, like, like, because it had gotten pretty far out of hand. We're like, oh, Arden's not good at math. And luckily and she lived the whole year like that, second grade. And then luckily in third grade, her her second grade teacher did that thing where she leveled up with the whole class. So the whole class had the same teacher two years in a row.
Scott Benner And then the math lesson moved to a different time in the schedule. And early on in third grade, the teacher called me and she said, oh my god, Scott. She's like, Arden's not bad at math. I figured out what happened and she told me. And it took Arden a while to catch up and she did, but it still sticks to her.
Scott Benner Like, she's 21 right now. She'll be 22 this summer. And no matter how good she is at school and she's very well and she's fine with math and everything, you can still see in the back of her head, she thinks she's not good at math. Like, it's a thing that stuck to her after all that time. So not only did it slow her down in second and third grade, but it it impacted her moving forward.
Scott Benner And, you know, you just you can't miss school. Like, you don't know what it is you're gonna miss exactly. I'm glad that that worked out for you. So you guys just texted each other and handled it that way.
Matilde Yeah. We texted each other. The school made me when I selected to be the five twenty nine where she would get extended time for tests and so forth, they said to me, well, if you waive the nursing services I opted to waive the nursing services because I didn't want my kid to go three times a day to the nurse. Yeah. And I told them they're like, well, if there's an emergency, I said, you know what?
Matilde If there's an emergency, call 911 before you call me. Treat my kid like another kid.
Scott Benner That's exactly what I told them. It didn't mean I don't want the nurse if she falls and breaks her arm or she has a seizure or something like that. I I want the nurse. I'm just saying I don't think we need her to be there on a schedule constantly. Like, we can take care of bolusing for food and stuff like that.
Scott Benner So yeah. Yeah. So you basically just did what the what I was talking about in the podcast.
Matilde Correct, Scott. That's why I love you.
Scott Benner Like And it worked.
Matilde Yes. It works. Yes.
Scott Benner Why did you wanna come on the podcast, Sarah?
Sarah Because I wanted to show other parents and even if other kids are listening that you can still be perfectly normal and have this annoying disease but still live your day to day life and enjoy life.
Scott Benner That's awesome.
Sarah And I feel like a common misconception when you have this disease is that you have to stop your life and take a moment to learn everything, which is true. You do. But as you're learning, you can keep going.
Scott Benner Yeah.
Sarah Like, keep it moving. Keep the train moving. The train doesn't stop and it doesn't it's the train is not gonna stop for diabetes. So
Scott Benner Yeah. That's awesome. I mean, you got a great attitude about it. I I'm not gonna lie to you. I think that setting you up to be you know, to have some control over yourself at school goes a long way to getting yourself, you know, your self esteem and and confidence rolling in the right direction.
Scott Benner I mean, you're obviously having good outcomes. You understand how to use your insulin. That's, I think, a big part of the whole thing. You're confident. I were you were you a confident person before this?
Sarah Yes. Yeah. I think I'm confident by nature.
Scott Benner Yeah. Being tall doesn't hurt either, Sarah?
Sarah And also, I'd like to add on to the nurse thing. That was, like, obviously one of my biggest fears because there was a girl in my school who was constantly being followed around and I was not about to be that girl. Mhmm. And also, as one of my electives at school, I would help in the office and that's where the nurse was. So I would encounter her whenever I went to my little office help and she spoke about some this other girl and was telling the other office ladies about her health situation.
Sarah She was diabetic.
Scott Benner Mhmm.
Sarah And that's just a violation of privacy. So that was even more of another like, that was that was just another reason not to use this woman's services.
Scott Benner So you're there horrified listening to her spill the tea on somebody else's life. Exactly. Yeah. And you're like, woah. If you knew me, would you be talking about me like this?
Sarah Exactly.
Scott Benner Oh, so you're trying to keep your stuff to yourself.
Matilde Mhmm.
Scott Benner Do you have other people you can talk about it with though? Do you have some close friends who understand? Like, if you were with a group of girls and and you, you know, got dizzy and you couldn't help yourself, does somebody know what to do?
Sarah Yes. My close friends know what to do in that case. Like, if they see me feeling bad, like, I feel like the fur the first instinct would be, oh, do need to eat something? Or if it's really bad, they know to use the pen, like the Gevo Kypo pen.
Scott Benner Good. Good.
Sarah But I have a good supportive group of friends who look out for me.
Scott Benner Awesome. And you sound like a reasonable young person, which I'm happy about. You would never drink or do drugs. No. Is that right, Sarah?
Scott Benner Yeah. Right? And and if if your mom wasn't here, you'd say the same thing?
Sarah No. I would definitely say the same because, honestly, with diabetes, you just have you have to be even more careful with your health.
Scott Benner You're not looking for extra problems?
Sarah Correct.
Looking Ahead: College and the Future
Scott Benner Yeah. Or to make this harder. Right?
Sarah Mhmm.
Scott Benner Yeah. Okay. Very nice. Do you plan on going away to college?
Sarah I do.
Scott Benner Where are you gonna go? That's an interesting thing. Like, when you live in a place where everybody's trying to get to it, where do you think to go when you're leaving? You know what I mean? Like, a lot of people are like, oh, I wanna go to Miami to go to college.
Scott Benner Like, you're there. So
Sarah Oh, exactly. Yeah. Honestly, I feel like that is just is one of the best universities out there. And if it wasn't two minutes away from my house, catch me there.
Scott Benner Well, can I share something with you? Sure. My daughter said to us recently when I was leaving high school, she's like, I thought the worst thing that could happen to me is that I'd be one of those people who went to school five minutes from my house. And so I went to this place and then she switched and went somewhere else and she and then eventually, she's like, I'm just gonna come home and finish up at home. And she's like, I don't know if that's the right answer for everybody.
Scott Benner She's like, but I do wish I wouldn't have felt so embarrassed by the idea of looking close to home. So, I don't know. Maybe maybe that won't be your finding. She's Well pretty happy with it now.
Sarah Oh, that's so nice to hear.
Matilde But you don't think it's
Scott Benner of here.
Matilde Yeah. Yeah. I don't
Sarah think it's an embarrassment thing. I just think like, I wanna discover something new and
Scott Benner Okay.
Sarah Get out of my comfort zone a little bit. And I feel like I'm not gonna be able to do that in my same neighborhood with the same circle of people
Scott Benner Mhmm.
Sarah With, like, the same support system around me. Like, I feel like I have to step out a little bit.
Scott Benner I hear you.
Sarah And I feel like I've I've worked so hard and, like, I don't know. I want something different.
Scott Benner You're a good student? Yeah. Yeah. What is it you're interested in?
Sarah I'm interested in possibly studying communications or journalism. I'm the editor in chief of my school newspaper.
Scott Benner Nice.
Sarah And maybe or maybe going into law someday. I'm not really sure. But that's the areas I'm interested in.
Scott Benner Where do you think you're gonna look at school? Like, far mom, how far away is okay?
Matilde Yeah. Needs to be a plane, a nonstop flight easy. Mhmm. East Coast for sure. That's it.
Scott Benner Yeah. What about the weather, Sarah? Are you gonna go somewhere cold?
Sarah I mean, maybe.
Scott Benner Oh my god. I just wanna live somewhere warm so badly. I I would
Sarah Where do you live?
Scott Benner In New Jersey.
Matilde It's We can swap.
Scott Benner Yeah. You wanna come oh, you wanna be close to the city. Maybe. I'm a fifty minute train ride from Manhattan. Okay.
Scott Benner Listen to her laughing. You can't let her out of the house. She's gonna Sarah, you're gonna be a problem when you get out of there, aren't you? Listen to her laughing, but you can't let her leave, Patoni. Well,
Sarah I'm gonna be such a problem.
Scott Benner Oh my gosh. Well, that's awesome. And what do you have? Two more years?
Sarah I'm finishing well, I'm in the third quarter of my junior year. Mhmm. And then I have my senior year and then I'll be out.
Scott Benner Okay. Very nice. That's awesome. Hey. Listen, I've been wondering this the whole time.
Scott Benner It's really not apropos of anything and has nothing to do with your story, but your mom speaks more than one language. Right?
Sarah Yes.
Scott Benner Yeah. Do you?
Sarah Yes. I do.
Scott Benner Okay. Matilda, I'm sorry. Are you first generation or second?
Matilde No. I was born here in The United States. Actually, I was born in Virginia, but I've lived in Coral Gables in my whole life since I was five years old.
Scott Benner Okay. Okay. Because I was gonna I have a a friend of my daughter's her mom's first generation from Italy, and she talks a lot about the difficulty she has, like, because her mom struggles with some things, like, you know, language sometimes or but you guys don't have that issue.
Matilde No. My my family, my mother was American from The United States and my father was Colombian from Medellin, Colombia.
Scott Benner Oh. Oh, Mhmm. He hooked that mom. Is your mom still alive? Is she okay?
Matilde No. My parents have both deceased. Both deceased. My mother predeceased my father by, like, seven months.
Scott Benner Oh, gosh. Oh, I'm so sorry.
Matilde Yeah. Thank you.
Scott Benner Yeah. Sarah, can I ask a weird question? Is it weird to hear your mother say, my dad passed away, I think, five years ago? Does it make you feel like, oh my gosh, is there gonna be a time in life when I don't remember exactly when my parents left? Is that or is that too deep or you're young?
Scott Benner I don't know if that hit you or not when she said that. I I don't want you to cry. You'll be like, no. I'm thinking about it now though. Thanks a lot.
Scott Benner But but but but, like, I my mom passed away, I told you. That's why I asked, and, like, I'm starting to lose the concept of how long it's been difficult.
Matilde Yeah. No. And I'm so sorry for your loss Thank you. Scott.
Scott Benner Thank you. But, Sarah, back to my question. Do you have, like, a feeling for, like, time? Is that something or are you just so young you do not think about that like that?
Sarah No. I I I do have a feeling of time. I feel like, obviously, I was diagnosed. It's almost gonna be four years, but I feel like it's it's crazy to think because I I can't believe time has flown by that fast.
Scott Benner That fast.
Sarah Not even diabetes related. Like, I can't believe that I'm a junior in high school and starting to look at where I'm gonna go to college. Like, it feels unreal.
Scott Benner Right. No. For sure. Do you date? No.
Scott Benner No? When you think about dating, do you think about the diabetes as well?
Sarah Not really. No. Because I don't date.
Scott Benner You feel like I don't need any of that problem. But is that because you can't find you you're just not interested in it right now? You're busy with your other stuff?
Sarah Yeah. I'm, like, busy with my my own life.
Scott Benner Okay. And you don't wanna bring somebody else into it and and then you have to give time to something or somebody else. Is that right?
Sarah Yeah. I guess I'm just protecting my peace.
Scott Benner Yeah. You're telling me there's a lot of crazy people at that school. You can't find one that you think is normal? Listen, I love it when she laughs when she doesn't wanna answer between you. That's my favorite part of Sarah.
Sarah I think everything is meant to happen for a reason. And when it's the right time, it'll be the right time.
Scott Benner And you won't have trouble when when that time comes. You won't have trouble sharing your diabetes with somebody else? No. Okay. It's not a thing you'll wanna keep private?
Sarah I don't think so.
Scott Benner Okay. So it's interesting. So you don't your problem with, an insulin pump isn't that somebody will say it. It's that it's it literally is that it's on you. Yeah.
Scott Benner So you don't mind do you inject in public? Do you do people see you inject
Matilde your insulin?
Sarah I do inject in public.
Scott Benner Okay. Yeah. Okay. That makes sense. Alright.
Scott Benner Isn't it great that she's not dating?
Matilde You know, she can my kids can they don't have a curfew. They can go out. They're they're I always know where they are. They always call me, text me. You know, the culture here is, you know, in in Miami, we to is to enjoy life, go out, be with your friends, have a good time.
Matilde She's super responsible. If she wanted to date somebody, she's more than allowed, of course. But she's very busy with working out, studying with her friends. Yeah. She's very busy.
Scott Benner Do you see what your mom's doing? It's genius. She's not holding on tight so you don't feel restricted, and therefore, you don't feel like you have to, like, push back. Exactly. Did you know she was doing that to you?
Sarah Like, not really.
Scott Benner No. No. You know, Matilda, how did you figure it out? Were you were did your parents treat you the same way or did they did they try to restrict you when you rebelled?
Matilde No. No. No. No. No. I had a boyfriend my whole life.
Matilde Always. Always. But that was just how it was. I always had a little boyfriend, and I thought it was I think it's super healthy and super nice. Yeah.
Matilde You know, you get and then you end up graduating and getting a great husband like what happened to me.
Scott Benner Very nice.
Matilde But I will tell you something. I wanna tell you this, Scott
Scott Benner Yeah.
Matilde So the parents know. My kid remember she missed the sleepaway camp when she was diagnosed because she was supposed to leave in three weeks. Right. Right. The sleepaway camp, they don't have diabetic kids.
Matilde Right?
Scott Benner Mhmm.
Matilde So the next year came and I was like, oh my god. Are we gonna send her? Because my young kid my youngest wanted to go too. I had to do a lot of mental gymnastics and we had to do a lot of conference calls. We did like conference calls with the camp.
Matilde Like, I pushed myself and I pushed Sarah. She was a mom. I don't think I wanna go. And I was like, you're going.
Scott Benner Because
Matilde a mom that I met, a type one mom that has two type one kids in in this Miami area, she told me, if you were gonna do it before diabetes, you gotta do it after. So I pushed myself, you know, pins and needles shaking, but you're going. Of course, the camp made the exception to allow her to have the cell phone, which, you know, these camps are cell phone free, but she has to keep it. So that's why, you know, in preparation for if she wanted to leave her house. Scott, I never I mean, I've when I tell I've lived in Miami.
Matilde I went to undergraduate school here and graduate school here. I didn't move out of my house until I was 28, until I bought my own little apartment. Like, I'm a, like, a home girl. Like, you know?
Scott Benner Yeah. Yeah. Yeah. Move you're moving slowly. You're doing things very specifically.
Scott Benner Yeah. Yeah.
Matilde And so I wanted to just for her to have the tools, like, okay. If you wanna go, go. But, you know, get some practice, you know.
Scott Benner So you're not in any rush to leave either? Sarah, like, you think it's possible you'll go to college then come back home?
Sarah I think so. Yeah. Definitely.
Scott Benner I mean, listen, you're gonna need to save some money. This stuff ain't cheap. Yeah. Is that a thing you think about? Like, my my daughter talks about that sometimes, like, how do I make sure I can pay for my health insurance as an adult when I'm by myself and everything?
Scott Benner Is that something that's entered into your mind yet? You're a little young. You might not have.
Sarah Not really.
Scott Benner Yeah. I wouldn't have thought about it either. Don't think at your age.
Sarah I I, like, see the price of things nowadays. It's crazy. So I I just know I'm gonna have to work really hard in general.
Scott Benner Yeah. It is true. Keep making good decisions and moving forward and stuff comes together.
Matilde Absolutely. And my daughters are have faith in God and they put, you know, put God first to make good decisions. Yes. Absolutely. She's gonna be fine Yeah.
Matilde One day at a time.
Scott Benner Sarah, if you're if you're a person, like your mom describes who, you know, has a religious belief in holding, is there a feeling you ever think about like why did I get this?
Sarah Oh, definitely.
Scott Benner What have you figured out so far when you mull that over?
Sarah So, yeah, first when I was diagnosed, I was obviously very confused and I always thought why why did why do I have this? Why why didn't why me? And honestly, even on the hard days, I still feel that way sometimes, but you go through like ups and downs. Some days are harder than others, and it's hard because sometimes when you're having a hard day you see others having like an easy day, but they probably have issues in their life that you don't know about, but this is just the issue I have to carry with me for the rest of my life. Hard to accept at first, but now I know that I I guess I know it was meant to happen to me Mhmm.
Sarah And I think it's made me into a stronger person.
Scott Benner I bet it is. What constitutes a hard day?
Sarah Probably like the censor being, like, all messed up
Scott Benner Okay.
Sarah Or, like, a hard night.
Scott Benner We have to put in more extra effort or technology doesn't work the way you expect it to. Well, you know what? I I know this is not a thing you have context for, but I've spoken to people who've been living with diabetes for all different lengths of time and I I'm I'm happy that the that what constitutes a hard day for you is that your sensor didn't act right or that you had a blood sugar, you had to fight with a lecture longer because that is such a better better situation for people with diabetes. And and it makes me excited for what, you know, what a hard day will sound like ten years from now. Do you ever think about, like, the algorithms that are available in the automated systems and how they might help you overnight?
Scott Benner Like, do you ever think, like, oh, maybe I should just get a pump?
Sarah No. Not really. Because I I have my centers get faulty a lot, I'd say. Mhmm. So it tells me I'm low a lot when I'm actually not low, and it'll just mess up my numbers.
Scott Benner Possibly. Yeah. I it it is part of it for sure. It it doesn't end up being as impactful as you think, but I just wondered if you ever thought about, like, well, maybe this thing, you know, if I'm asleep at two in the morning and my blood sugar starts to drift up, this thing will push it back down and take care of it without me having to wake up. See?
Scott Benner Or if you try to get low, it can stop you from getting low so it doesn't happen as often if it is happening. Are you getting do
Sarah you get low overnight ever? Not like, not really.
Scott Benner Okay. Are you more higher when it's an overnight issue?
Sarah Yes.
Scott Benner Okay. And how often does that happen?
Sarah How often am I high overnight?
Matilde I would say, you know, let's call it a few nights a month. Mhmm. Also, Scott, there two reasons she doesn't want to use a pump.
Scott Benner Okay.
Matilde Number one is because the amount of insulin she uses.
Scott Benner Small
Matilde enough. Uses, like, her basal is very low. Her carb ratio is, like, for 10 carbs, one unit. Yeah. Her insulin needs maybe are a little low for, let's call it, for the regular Omnipod.
Matilde Mhmm. Number two is because she doesn't want it on her body. For me, she doesn't want people to see it. Yeah. And plus, she likes to keep you know, those those things irritate the body.
Matilde They irritate the skin. We've done a lot of things. We do a a patch under the Dexcom, and we do then we put the Dexcom on. We know. We treat the skin.
Matilde We put a patch. Then we put the Dexcom. Then we put another patch. We have, like, a whole system to protect her skin. So that's, like, another thing.
Matilde You know? Yeah. And then here, you're you know, they're in the bikini in the in the small clothes. So it's like
Scott Benner Just not looking for extra listen. I don't not understand. I I'm just I was just wondering if she'd thought about, like, the idea of an algorithm being helpful to her. That's
Matilde all. Sounds fabulous.
Scott Benner Yeah.
Matilde Like, I think if her body needed it, and I think she would do it.
Scott Benner K. Yeah. I mean, you you you don't know. Like, she could also do this. You know, Sarah, you might do injections your whole life and just be like, hey.
Scott Benner I'm great at this and it works for me. That'd be awesome too, you know. I'm not saying there's a right or wrong way. I was just wondering. Have I skipped anything?
Scott Benner Missed anything at all? Is there anything we forgot to talk about or something you wanted to talk about? I wanna make sure I don't miss anything because there's two of you and it's a little more confusing for
Matilde me. Ultimately, I think the most important thing is as a parent, you're the one that has to advocate for your kid. You're the one that needs to get educated and learn how to really manage this condition because the diabetic educator that you see three to four times a year for max thirty minutes to an hour, they can help, but they can't manage the day to day. You gotta figure that stuff out on your own.
Scott Benner Yeah.
Matilde And that's where your podcast is. So what you've done for the type one community is like, congratulations. You know? Thank you. I really, really appreciate you and and and what you've done for our community.
Scott Benner Well, that's very kind of you, and it's my pleasure. I very much enjoy making the podcast. So, you don't really have to thank me for it, but but I I will accept your thanks and Yeah. And I will carry them throughout my day. I'm just very happy.
Scott Benner Like to hear you talk about, you know, some of the things you've had success with and how things are working for you guys anyway. What is my last question for Sarah? I have one last question. You're so young. I don't know if it's if it's too early, but do you ever think about having kids?
Sarah Yeah. I do.
Scott Benner You do? And is that a thing that has changed for you since you have diabetes or has it not changed for you how you think about it?
Sarah No. I actually wonder about that sometimes. Like, how's that gonna work? I'm building like, caring for a human in your body while caring for yourself.
Scott Benner Yeah. It can be a lot of work. There's a ton of information and a lot of ladies have have shared their stories in the podcast. If you ever get closer to thinking about it, you can listen to them. They'll talk about how their insulin needs change and shift throughout pregnancy and stuff like that.
Scott Benner It's pretty interesting actually. I have no more questions. I feel like you guys did such a great job of telling your story. I feel like I'm I'm I feel done.
Matilde Scott, thanks a million.
Scott Benner Thank you so No. Really. You guys are terrific. This is lovely of you to do. I appreciate you taking your time.
Scott Benner Sarah, why are you not at school? What's going on?
Sarah For this podcast.
Scott Benner Oh, nice. Got a day off?
Matilde Yeah.
Scott Benner Will you go in late or no? Forget it.
Sarah No. I'm not gonna go in late. I'm not
Matilde She's really she's super responsible. She can miss today. It's not
Scott Benner a problem. Well, that even that's very nice. I'm glad that that it seemed important enough for you to do something like that. Thank you. Seriously, hold on one second for me.
Closing & Sponsor Messages
Scott Benner I really appreciate this.
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Scott Benner People say it takes the stress out of the early days and replaces it with clarity. They tell me this should come with the diagnosis packet that I got at the hospital. And after they listen, they recommend it to everyone who's struggling. It's straightforward, practical, and easy to listen to. Bold Beginnings gives you the basics in a way that actually makes sense.
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