#1899 Lightning Doesn't Strike Twice
Lightning Doesn't Strike Twice
Three of Daphne's four kids have type one diabetes — odds of one in 6.8 million. A Maine mom on back-to-back diagnoses, looping three kids, marriage, and refusing to shrink her family's life.
Jump to a moment
- Multiple kids with type one isn’t purely random. Northern-European ancestry often travels with other autoimmune conditions — celiac, thyroid disease — and Daphne’s family fit the pattern. If T1D runs in your family, ask your care team about antibody screening (like TrialNet) for siblings.
- All three of Daphne’s kids use an automated insulin delivery system (“looping”). She notes the ADA now supports patients using automated algorithms — when her Maine endo wouldn’t, the family moved care to Boston Children’s. If your practice won’t support your setup, it’s reasonable to ask why or to seek one that will.
- Medical parenting carries a real emotional load. Daphne is candid about postpartum depression that needed serious treatment and about burnout being part of the picture. If you’re struggling, tell your doctor — support exists, and asking for it is not a failure.
- The household’s one firm rule: never blame your partner for anything diabetes-related. With the divorce rate for families of chronically ill children often cited near two-in-three, Daphne treats protecting the marriage as its own kind of management.
- Joy is a practice, not a reward you earn later. A packed “grab bag” by the door, a spare pod in the car, a pre-bolus before the meal — small, boring systems are exactly what let this family sail the Caribbean instead of staying home. Build the routine, then go live.
- US Med — Episode sponsor — CGMs, pumps, and diabetes supplies delivered. usmed.com/juicebox or (888) 721-1514.
- Eversense 365 CGM — Episode sponsor — implantable CGM with a one-year sensor. eversensecgm.com/juicebox.
- TrialNet — Free type 1 antibody screening for relatives of people with T1D — the sibling-screening question Daphne raises.
- Loop / Automated Insulin Delivery — Background on the DIY/automated looping the family runs across all three kids.
- Baqsimi (nasal glucagon) — Nasal-spray glucagon for severe lows like the one Daphne describes at camp.
- Postpartum Support International — Helpline and support for postpartum depression and anxiety. Call or text the PSI HelpLine at 1-800-944-4773.
- Juicebox Private Facebook Group — Community for anyone impacted by diabetes — type 1, type 2, gestational, and loved ones.
- Defining Diabetes series — 60+ short episodes decoding diabetes terms — bolus, basal, insulin sensitivity, and the rest.
- Bold Beginnings series — The newly-diagnosed starter series — also available in ASL.
Every word of the conversation
Welcome Back0:00
Hello, friends, and welcome back to another episode of the Juice Box podcast. My grand rounds series was designed by listeners to tell doctors what they need, and it also helps you to understand what to ask for. There's a mental wellness series that addresses the emotional side of diabetes and practical ways to stay balanced. And when we talk about GLP medications, well, we'll break down what they are, how they may help you, and if they fit into your diabetes management plan. What do these three things have in common?
They're all available at juiceboxpodcast.com up in the menu. I know it can be hard to find these things in a podcast app, so we've collected them all for you at juiceboxpodcast.com. 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. 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. Today's podcast is sponsored by US Med, usmed.com/juicebox.
You can get your diabetes supplies from the same place that we do, and I'm talking about Dexcom, Libre, Omnipod, Tandem, and so much more. Usmed.com/juicebox or call (888) 721-1514. The show you're about to listen to is sponsored by the Eversense three sixty five. The Eversense three sixty five has exceptional accuracy over one year and is the most accurate CGM in the low range that you can get. Eversensecgm.com/juicebox.
Three of Four2:09
Okay. Hi. I'm Daphne. I'm a mother of four, and three of my kids have type one diabetes.
Goddamn, Daphne. Way to start strong. Jeez.
Yeah. That's a huck.
Oh, kidding. Three of four?
What's the
what's the age breakdown?
Yeah. We've got an 11 year old who does not have type one diabetes, so we can move on. So lucky
and then the other three.
Yep. And then we've got an almost 10 year old with type one, an eight year old with type one, and a three and a half year old also with type one.
11, 10, 8, 3.
Yep.
Mormon?
Yeah. Just, there's some Irish Catholic DNA.
Oh, oh, I gotcha. Yeah.
Not practicing. Certainly lapsed.
It's in the blood. It's in the blood, you're saying.
Yeah. I'm I'm saying, you know, things get a little wild. Was And we had three kids in three years.
So Is the 10 year old what they call an Irish twin?
They are 18 apart. The first three were all born in three years. And so what's, like, pretty wild about our diabetes story is that we had a three year old, a 22 old, and a 10 old when the first kid was diagnosed. He was 22 old.
Oh my god.
“William Is Just Too Sweet”3:18
And, like, I literally had gone back to work bringing my baby with me that day, and I got home, and our nanny, who we adored, who'd been with us for a while, was like, look, he's been really thirsty. And she didn't say it, you know, she wasn't like, you need to you need to take him to the doctor, but she did kind of flag he's been really thirsty. He's been peeing a lot. I was like, oh my god. Yes.
He's been peeing through his diapers so much. This is so weird. And that night, I put this the symptoms in. This was 2018, but I remember it, like, it was a minute ago.
I put
symptoms into Google, and I was like, it wasn't like, oh, your kid has a cold or diabetes. It was like, oh, your kid has type one diabetes.
Yeah. But there was no ambivalence. It wasn't like, you know, it could possibly be this or this. It was yeah. Like Oh.
God. It was so clear. You know? It was just the Internet just told me my kid had type one. And I my husband and I were sleeping in separate rooms because I had a 10 old, and I, like, went and crawled into bed, and I was like, I think William has type one diabetes.
And he was like, I know. I think so too.
Oh, no. He you hadn't talked about it previous to that?
We had never even it had never even crossed our radar. No one in our families has type one. You know, we've got some hypothyroidism here and there, some asthma, whatever, but nothing like type one. We I had had one friend in college whose sister had it. That was the only thing.
And another, like, kind of peripheral friend who had type one since she was 17. But other than that, I had no idea what it was.
Anthony, I'm gonna be a bummer for a second because we're already having a good time. That made me cry. Oh. I it it put me right back.
Yeah. Put it
put me in a car at a traffic light, like, two miles from a hospital. Oh. Yes. Sorry. Yes.
No. Knocked me knocked me right over.
Instructions. Right? Like Yeah. We go to the doctor. We I emailed our pediatrician.
She got us in at noon the next day. This little boy, William, the first kid diagnosed as the sweetest human on the planet, and already was the sweetest human. And and he he had, like, you know, he'd been peeing so much. And then, of course, we get to the doctors. He's not peeing at all.
We put a pee bag on him because he's not potty trained. He finally pees. We're all laughing, like, oh, this is such this is so ridiculous. Like, you know, we have three kids. Why are we so anxious?
She walked out of the room with the pee. She came back in, and she looked at us, and she said, you know, William is just too sweet.
Aw.
And we all just burst into tears.
Yeah.
And that was the moment that the world just everything shifted.
No kidding.
And you know how that feels. Right?
It's when you think, I know how those ladies drive those kids into lakes. Yeah. Yeah. Kids were going for a ride. Put your seat belt on real tight.
Okay? 100%. I tried. It didn't work out. Yeah.
I'm gonna give up. You don't mind. Right?
Yeah. Sorry, guys. Okay.
How old were you at that point?
Oh my gosh. I was, like, 31. And my husband and I were both lawyers, and he was working a million hours a
week. Yeah.
And I was, like, staying afloat part time. Anyway, so so we went yeah. So so and then so what I mean about the car ride is then she was like, you put that baby in the car and you drive straight to the ER, and you don't stop and, know, like, you just get to the ER. I don't
care if you see I don't I don't care if you see, an In N Out burger on the way or something.
Right. Yes. Yeah. The police try and pull you over. Don't give a shit.
Yeah.
Get to the ER.
Drive drive. You'll let them know what happened when you
come in. Right.
And they all pull up behind you with the lights on, and they're tasing they're tasing your husband.
Yeah. Exactly.
At least you're two lawyers. You'd love to get tased.
Oh my
god. What
a joy that would be. Yeah. Yeah. We've had some lucrative moments where people have gotten tased. Actually, that's been good for our careers.
So, yeah.
Yeah. Maybe try talking another second.
Right.
It makes someone go face down on the pavement.
That's exactly right.
Although, I mean, let's be honest. Just between you, I, and everyone listening, taser videos are fantastic.
Fantastic. Could watch them for hours. That and the boats where people are trying to get out of really rough inlets. I don't know if you're a boater. That shit is wild, and it feels like my life.
And I'm just like
There's that great I don't know how if you're old enough for this part of the Internet or not, but there's this great video where these people in their thirties or forties are on a boat, and they're just going along. And it's it's bouncing along, and then the boat catches a bounce that, like, it just knocks everyone in the frame into a different direction. It's maybe my favorite thing I've ever seen on the Internet next to the lady stomping grapes and falling on the news report.
Yeah. That's a real I have seen that one. That's a really good one.
That one's my favorite because it's the noise she makes when she hits the ground. Goes, like like you like like like it just hit her in the ribs and, like, straight through to her asshole. You know what I mean? Like, she's Anyway, let's talk about three of your kids having diabetes. Now Yeah.
So this is all happening, and you think to yourself, you know what we should do? We should have another baby.
Well, so no.
Okay.
I did not think that. No. That's such a good question. So we have these three little kids, and we kind of, like, adjust to the type one. You know, we only have one type one diabetic, and things start to feel a little manageable.
So then then I get this pretty pretty big job. I got my dream job. I was a federal public defender. I got the job. I started in November 2019.
And, you know, at that point, like, we have sixty six hours of childcare. We're both working full time. Life is, like, pretty clear about what it's gonna be. Yeah. And then COVID came.
The world shuts down. Our nanny can't come. We're both trying to work from home. Our our nanny who had been with us for, like, three and a half years and was our lifeline at that point, who who had been with us from the minute that William was diagnosed says, look. My husband wants to move to Florida for a job.
Mean, I first of all, moving to pandemic. Sorry, Carrie. But moving to Florida during the pandemic was a wild choice. But anyway, they moved to Florida. We're devastated.
We loved her. And as she's telling us about these plans, my husband we just bought this old boat. We bought it for, like, $15 on Craigslist, and my husband was fixing her up, and he was like, you know what we should do? We should sail to The Caribbean. We should go to The Bahamas for the winter.
And I was like, you're fucking crazy, dude. I just got my dream job. Like, what are you even talking about? But the courts were really low. Like, there weren't a lot of arrests happening.
Everything was by Zoom. My husband had just wrapped up a big case, so he was able to take a sabbatical. So we so we made this plan, and we went on this boat trip for eight months with our three kids. Only one had type one at that point.
No kidding.
And we we lived on the boat for eight months, and it was, like, the most unbelievable magical thing you can imagine. And also, was totally bonkers because we had a five year old,
a four year old, and a two and a year old. Oh, no. No. It's just, like, argument to make the stage take your kids from you. But I hear what you're saying.
Yeah.
Yeah. Yeah. There are more moments like that as this unfolds. So we go. We have this great time.
We get back, and it's now June 2021. And we kind of slip back into life. I'm working. Ben's working. Everything is kind of status quo.
And then we were on a
trip with some friends in January 2022, and I was like, oh, I feel very I feel very pregnant. There is something very wrong here. And I was pregnant, and it was a total surprise, which is not which is, like, not a fair I mean, my
It wasn't a total surprise. Like, you know how happened.
Be honest, I had three and three years. Like, it wasn't a total surprise. It was an
Hey, Daphne. You just disappeared. Did you hit your mute button by mistake? Daphne, you are gone gone, but oh, she's she's gone. She disconnected herself.
Speaking of total surprises, let's put the ads here. I have always disliked ordering diabetes supplies. I'm guessing you have as well. It hasn't been a problem for us for the last few years though, because we began using US Med. You can too.
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That's what I'll do. The ads are gonna go right here. And then as soon as they're over, Daphne will be back. Okay? Alright.
Hey. I was getting ready to call the cops and send them to your
Oh my god.
Your location. You okay?
Man, I don't know what happened.
It's okay. Don't worry about it. It was hilarious. Actually, can I tell you it was perfect? Because it was right at the spot where we like to put the ads.
Just Thank god.
And you said and you said, well, it wasn't really a surprise. I'm gonna cut it right there and then put the ads in. Fantastic. Feels like you're producing, to be perfectly honest with you.
Oh, excellent.
So so you were not surprised because you're a the two of you were a baby making machine.
So Yeah. Right. Right. So we weren't surprised. But but Ben had long said, like, I I don't think we should have a fourth kid because what if someone else develops diabetes?
And everyone every doctor was like, that is are you still there?
I'm listening. That is good. Yeah. No. I By the way, I love your attitude.
You and I would get along great.
Yeah.
Yeah. You're like you were just like, that fucking phone shut off again? That what what a tone in your voice, and and you didn't even say a full word. I was like, oh, she and I would really get along. I love the complaint.
Oh. I can't even tell you.
Yeah. I know. I know. I kind of wanna talk about that at some point about, like, the complaints, like, just get you know, like, you just you gotta, at some point, turn the complaints off about the diabetes because holy you could just I could complain all day about it.
But so did you guys about it. Did you guys have a conversation about terminating the pregnancy?
No. No. No. Okay. Nope.
It was never and and not for, like, any reasons other than other than I had wanted a fourth baby. You know?
Mhmm.
And and Ben was kinda just like, okay, this is what we're gonna do. We're gonna have another one. We love having a lot of kids. It's fabulous. The kids are amazing, and we're just gonna do this.
And it did take me, like, six days to work up the courage to tell him, because I knew he was gonna be a little distressed. Yeah. And, like, my best friend's husbands knew before Ben did, and they would all, like, see him at pickup and, like, be avoiding making eye contact, you know, because he knew that I hadn't, like, gotten it together to tell him. So but his biggest hesitation was always when we would have the conversation about a fourth kid, but what if someone else gets diabetes? How do we give everyone what they need?
How do we pay for all of it? You know? Yeah. And more importantly, how do we give them the emotional time, energy, and love that is required?
Right. Are you about to tell me that your second gets diagnosed while you're pregnant?
I'm about to tell you that.
Oh, okay. I'm ready. Go ahead. 30 I'm ready.
Lightning Strikes Twice15:52
Six weeks pregnant, and we're on a boat trip. We're sailing just like a two week long trip, and the kid our our third child, Teddy, starts peeing the bed. Mhmm. And, you know, red flag, but okay, he's only four, like, whatever. We'll give it a little time.
And he had been having some behavioral issues, and we were sort of like, oh, and then we got home from that trip. It's August. I'm I'm either 35 or 36 pregnant, and, like, I have my baby shower on a Monday, and on a Wednesday, we put him to bed and he pees seven times in an hour. Nope. And I, you know and so I pricked his finger.
Yeah. And he was at 03:56.
Jesus. Where were you on this boat at this point?
No. At this point, we're home.
Okay.
Okay. And we just got on, like, a two week trip, and we get home. And my mother-in-law was here, and and we were sort of just having a visit with her. And I I pricked his finger at, like, 08:00 at night after he'd gone to sleep, and I let out, like, the most, you know, just like a keening wail of pain, like an animal. Right?
Like, a thirty six week pregnant, huge wail just, like, losing her shit.
And
I ran downstairs, and my husband knew before the words even came out of my mouth. And so that was that was number two.
Jeez.
And and and we had what was kind of wild about that diagnosis, and something I think is important for people who have multiple kids and one of them is type one, is that the doctors had said to us, like, five times over the past six months as we had gone in for some behavioral challenges to talk to the pediatrician, look, lightning doesn't strike twice. You know? There's no type one in your family. This is random. This is not what this is.
And and lightning does strike twice, it turns out.
Yeah. Okay.
And so so that time was, like, even more emotionally
Does this feel more targeted?
It felt like a fucking gut punch every minute of the day Yeah. For the first forty eight hours.
Like somebody was doing it to you now.
Yes. Right. But there and, and I do say this, that someone, a disgruntled client from my past in jail, must have a voodoo doll. You know? And just is like, oh, I think this year we'll just throw something else in there.
Yeah. Let's let's throw a pin in her eye in her eyeball this time. Ugh. So, anyway, Tati was diagnosed. I was thirty six weeks pregnant, and and Harry was born a month later.
Postpartum, and Finding Real Help18:24
Jeez. I did do you have postpartum by any chance with any of the kids?
I I so with Harry, I, developed it, like, three months in. And so he's the last baby. I'd never had it before. And I got so sick that I, I took a leave of absence from my job, and we ended up we couldn't find any help for postpartum depression. We live in Maine.
There was there was nothing here beyond, you know, here's a prescription for an SSRI, and we'll call and check on you in a couple days. And I was so sick that my friends had organized, like, they were sitting with me for an hour or every day. There was like a babysitting schedule for me
For you.
With my friends and my family. I was living at my parents with the baby. Ben was holding it down with the other three and his mom, and everyone was just trying to keep me between the navigational buoys until I could get some real help. And we found that help in Rhode Island, at Women and Infants, which is a a hospital down there where they have a partial hospitalization program for women with postpartum depression.
Oh, that's nice.
So I moved down there for a month, staying in various Marriott hotels, with the baby, and my dad would come down, or my parents, or my my best friend. And and then I did this, like, magical, truly magical drug where you get an infusion for sixty hours at a hospital. It's called Zulresso. And it lifted it lifted the curtain, and all of a sudden the world had color again, and I was I was myself. So was a wild experience.
A one time treatment drug?
It's a one time treatment drug. And then I was on, you know, I mean, I was on SSRIs and whatever for about a year after that. But I yeah. It was a it was a wild thing to have postpartum depression just with your fourth baby. Mhmm.
But I think a lot of it was was that now we had two kids with type one.
Yeah.
And it was so overwhelming. I was so lost in it, trying to figure out how I was gonna get everyone what they needed. And I was still trying to work, and and, you know, then I had to really call that. We had to we had to call that.
Hey. Zul ZULRESSO? Like
z ZULRESSO. Yeah. Z u l r e s s o.
Discontinued. They don't make it anymore. No
way.
IV medication for postpartum depression given as continuous sixty hour infusion is monitored. Metabolism. Important update. It's no longer commercially available in The US as of 01/01/2025. The FDA withdrew its approval effective April 14, at the company's request because the product was no longer marketed.
Oh, a newer related option is Zurzeevia, a generic Govit, an oral fourteen day treatment for postpartum depression. Wow. It's not ideal.
Well, that's probably more accessible to a lot of people. I mean, I think the only reason I could do it was that I had federal health insurance at that point.
Okay.
Because I think it it I think it was, like, a $70,000 treatment.
Oh my gosh. Mhmm. Jeez.
But I had really good health insurance, and I had saved up enough PTO that I was able to kind of still be on on the insurance.
Mhmm.
And I was hoping to go back to work. I loved what I did. It was it was truly my dream job, but it just wasn't in the cards at that point. So so that's so we're at January 2023, then it's April 2023. I'm not working.
I'm home. I'm feeling much better. And our our sweet dog who had we'd gotten during the pandemic and had gone on the trip with us and was just the cutest thing ever, was hit by a truck while our kids were outside waiting for the school bus.
Kathy, what in the hell?
So so that's the point where I really developed this theory about a voodoo doll.
God. Some guy's making toilet wine and putting a hex on me. Yeah. Yeah.
Serving forty five years. Yep. And he's like, well, my lawyer is a real shitty lawyer. And My god. Oh, it's terrible.
Hey. The dog I mean, when the dog goes, are you just like
Oh my god.
Okay. And by the way, dog didn't just die. Was hit by a car, and it was hit by a car in front of the kids
In front of the kids.
On their way
to school. Yes.
Did you still put him on the bus?
No. And no. One of them had already biked to school, and I was like, well, we'll tell Johnny when when Johnny gets home. And Ben was like, no, you fucking idiot. We'll pick the kid up.
I gotta tell you, when there's six of you and a dog, I I don't even know how you make one decent decision about anything, to be perfectly honest.
Yeah. Well, some would say we don't.
Are some of those people you and your husband?
Yeah. Yeah. No. We you know, we're fairly confident. Our parents are super skeptical of much of what we do.
The Third Time23:10
Mhmm. So anyway, so the dog dies, and then it's but like life life marches on. We've got the two diabetics. They're both in public school, and so we've got really good school nurses who are taking care of them. And and life kind of continued to, like, improve.
Like, it it felt manageable again. You you move through the the stages of grief, and you're back at, okay. Yeah. This is what life is. And then in January 2024, it was January 6, and our baby had been sick for a while.
He was 15 old. And I pricked his finger, and it was at one eighty three. And
Yeah. You don't I mean, after the second time, you don't have to mess around with waiting for him to wet through something. You're just like, oh, I see. I've seen this movie before.
Didn't like the ending then. Yeah. I like it now. Yeah.
Do you even have this I'm so interested. Is the reaction very different the third time? Like, you just throw your hands up?
Very different the third time.
Yeah.
Yep. Yeah. The third time, it was like, well, of course, you do. Of course, you have type one. And it was also like, you know, we we decided to go to the ER because our endocrinologist is sort of like, why don't you just come in even if it's just to like so that you can get a break from all the other kids for a second while you get your feet under you.
Just come in for the night to the children's hospital. And we got there, and of course, they couldn't find a vein, and there was a in the bed next to us, there was a total teenage breakdown happening with cops and Yeah. All sorts of stuff. And I'm, like, about to go over there to start representing her, you know. Like, that is, like, no.
No.
Like, this kid needs a lawyer. Hold on a second. Yeah. Yeah.
Exactly. I was like, this is the civil rights violation. Ben is like, no. You sit you sit your ass down. And and, and so we ended up not even spending the night.
We we threw a Dexcom on him, and we brought him home, and they're all looping.
Mhmm.
So we set up an iPhone, and we got him right on it. None of them honeymooned.
Right this right into it?
Right into it.
Yeah. They said I there's something somebody said to me recently I'd never considered or or heard. Like, the younger it happens, like, the fewer I guess, I don't even know how to put this guy. I don't wanna get it wrong, but I guess it's something to do with the amount of time you have to make beta cells to begin with. Or I don't even know how to put it exactly, but maybe I'm wrong.
So maybe somebody should Google it.
Well, but that kinda makes sense. Right? That, like like, if you don't have a lot of beta cells stored up, then they peter out more quickly or something.
I'm gonna have to dig into that a little bit because it just made so much sense to me when someone said it, but Yeah. I don't I don't know if I ever made sure that it was accurate or not. But I mean, neither here nor there. I mean, that's
just yeah. They have type one, and and they didn't honeymoon. And So And so yeah.
Translucent People & Family History26:02
I heard you I heard you say there's no type one in your family, but I'm gonna guess Irish, like, probably celiac and hypothyroidism.
That's exactly right.
Yeah. I mean, that's you the the very the translucent people, they don't do well with this stuff.
No. Yeah. Yeah. No. They don't.
No. They don't. And I blame my husband for that.
Well, why not? So Depression, anxiety?
Yep. Yeah. Yep. Okay. All around.
You got a couple of alcoholics?
We we we sure do.
Yeah. Yeah. Know what's going on. Hey. Any bipolar people in the extended family?
Really good question. A couple have been diagnosed.
Yeah. I'm good at this. Yeah. By the way, I've been doing this a while.
Yeah. Yeah. I know.
Yeah. No.
No. I've listened to your, clairvoyance before.
Thank you. Yeah. I mean, if an Irish person meets another Irish person, may I make a suggestion? Go meet a person with more melanin and try making a baby with them. That might help a little.
Okay? I mean and if one of you has got an autoimmune issue and the other one, like, even has allergies, that's a good reason to break up if you're gonna have kids. Yeah.
Yeah. You know what? We met when I was 23 and Ben was 25. So it was like, we didn't even know
Of course not.
What was up and what was down. Right?
Oh, I'm I'm I'm still not sure. I understand what's happening. But Yeah. Yeah. I I I I just know for sure that if you start putting those cocktails together, you end up with a with a zoomy little drink.
If you if you start putting those cocktails together, you end up with four kids under under seven. Yeah. You know? That's what you end up with.
I'll tell you what. That oldest kid must walk around like a cat in a room full of rocking chairs.
Oh my god. Yep. Yep.
There's a saying I've never used before in my entire life, but but I I am considering moving south, so I I'm trying to get ready. But but but no kidding. Like, that I mean, I I wanna ask, is your oldest did they come to you and said, hey. Is this gonna happen to me? Or
Yeah. We've talked about it. We've, we've pricked Johnny's finger a couple of times.
Mhmm.
We've all decided so far not to do trial net, or not yeah. That's what it's called. Right? Yeah. Yeah.
We've all decided so far not to do it. If if Johnny goes to, like, sleep boy camp or college, you know, and is out of my eyesight, then I will for sure do it.
Like, if that kid tries to leave here Yeah. We're gonna test his antibodies.
That's exactly right.
Wait. You know what's it I mean, though, how old is he now?
11.
I mean, I don't know. Like, I'm not saying it's more or less likely, but, I mean, for the way your family does it, it feels
Yeah. Like, the like, he's out of the the danger zone.
Yeah. I don't know. I mean, Jesus. Hey. You're not gonna have more kids.
Right?
I'm not. Okay. No. Alright. No.
I'm not. Nope. Nope. And as Ben says, if we did, it would be a diabetic boy. You know?
There's a seventy five percent chance.
That's what we do.
My gosh. We just went down. I just took the kids down to Boston Children's to start doing some genetic sequencing.
Okay. For
Well, that was sort of prompted by the two middle kids have these really large birth several really large birthmarks that are indicative of this other genetic disease called NF one. And and I don't know a lot about it. It has something to do with, like, something in your brain. There's there's a misfire where your brain doesn't tell your body not to produce benign tumors. And so if you have a certain number of these, this type of birthmark, you just get screened for it.
So that's kind of what got us in the door. But then really the genetic doctor was like, I don't think they have that, but what I think they do have is type one diabetes, and I'd really like to know why.
Oh, okay.
She's doing just a bunch of different of different tests to kind of see if there's if she can find a gene that's responsible. It's so wild to me how much doctors don't know about type one diabetes.
Not me. Not anymore. And I don't and don't blame the doctors either. I just think you know, what I what I really think is that we're only, I mean, slightly over a hundred years removed from, you know Yeah. Cowboys and and, you know Yep.
Doc Holliday being a real person. You you know what I mean? Like, I I just think I think things jump forward and we act like we know what we're doing. You know, we're like, oh, we made, we made the steam engine. Like, we're amazing.
And and and, you know, and we have a computer. We must know everything and blah blah blah. I don't boy, I think this is the infancy of humanity. And, you know, what we know fits in a thimble still. So Yeah.
You know, and not that, you know, I'm very happy about the way modern medicine is. I'm glad that I can get sick and go to a doctor or break my arm, go to somebody and they fix it. Like, trust me, I've I'd be a I'd be a shell of myself without without modern medicine. I'm I'm not even kidding. Like, if I sat here and started listing all the things I've had done over the years, like, I'd be lucky to be alive or even walking.
Yeah. You know? So it's great. You get to keep refacing the house. Like, every time the wind blows, you're like, oh, I can put up a new shutter.
I can put the roof back on, like, kind You of
know? Our kids are alive. Right? I mean, like Yeah. That's that's part of the mind fuck of type one diabetes as a parent Mhmm.
Is that, you know, you you shake yourself sometimes, and you're like, holy shit. There's so much to be grateful for because they have access to this stuff that's keeping them alive.
Oh, a 100 a hundred and some years ago, your story is you had four kids and three of them are dead. Yeah. Yeah. In in in short order. Like like
That's right.
Don't know. You you and and no IV get me off the get me out of the spiral drug.
Right.
Yeah. No. Right. Hey. There's that, there's a movie coming out on Netflix called The Last House maybe.
And Arden said, hey. Did you see this trailer for The Last House on Netflix? And I was like, no. She showed me the trailer. It's I don't know.
It's something about, like, I think there's some sort of an alien invasion, but everyone's locked in their house. They can't get out of their house. And everyone talks about, like, how you make food and blah blah blah. And my and, you know, we're all kinda standing around and Arden's boyfriend's there, and they're talking about everything. And Arden's like, well, that's not my problem.
Like, the food's not my problem. Like, how much insulin do I have is my problem. Yeah. And I was like, great. And then you and then she said she's like, but we do have, like she this actually happened at my house last night.
She goes, we do have all that GLP. And I and I said, I could I could cocktail you up with GLP and stretch that insulin out for a long time if I needed to. And I said I it was getting serious, and I said, I just want you to know that I that's how much I love you. I would get
I'll give up.
I would get fat again. Yes. But in the back of my head, I thought we won't have any food. I probably won't get that fat.
So yeah. It's not actually that big a sacrifice.
Yeah. Because it's not perfect. That's how I knew I loved her. I was like, oh, I guess I would give you my GOP. Okay.
Yeah. I hope she gave that appreciation it deserves.
Oh, I don't know that she can because she hasn't she's never she's lived
through She hasn't done it.
Yeah. Yeah. She hasn't lived through my life, but it was a it was a heavy lift for me.
Yeah. I went to go visit my my grandmother this week who's dying, and one of my aunts was there. My grandmother's blind, and she said, oh, Daphne's my most beautiful my most beautiful grandchild. You know, because I'm the first grandchild. And my aunt was like, I'm not quite sure why she said this, Judy, I love you.
But she said, well, dad told me
that she recently lost 50 pounds. I didn't know if she had 50 pounds to lose, but she did. And I was like, well, know, I had four babies. Like, I had some weight to lose. And my grandmother says, what?
You got fat? You know? She's literally she's lying there. She cannot hear. She cannot see.
And she's like, what? You've got fat? You know?
Have you ever heard the story of my, the end of my by the way, you are just a bundle of joy. You talk about death and blindness like it's joyful. Yeah. My, my wife's grandmother is in the hospital. She's in her last couple of days.
We go to visit her. She can barely see. I get through the doorway in the hospital, and she looks right up at me, and she goes, you got fat. First words. First words.
I was like, hi.
Did you get that GLP prescription the next day?
Oh, they didn't make it back then. But, if they made it when I was 10, I would have bought it now that I know what's going on. Yeah. Also, you see this, retrutatide that the Lily's gonna pump out next? Oh.
They're saying that not only do you not do you lose so you're still hungry apparently, but lose weight and don't lose muscle and something else. And I'm like, what magic is coming? You know what I mean?
That is a that is a miracle. Yeah. An actual miracle.
I I first of I think I'm gonna live forever now that GLPs have been invented. But but at the same time, like, I I can't wait to see what comes next. You'll see me. I'll pivot. I won't like, I'm a 100% I'm gonna I'm I'm not gonna stop till one of these makes me taller.
That's what I'm doing.
Well, I hope that there will be a juice box episode about that when you find that that, that hype.
Why This Show Isn’t on Video35:20
Well, I'm not I'm not giving up. Also, you gave me a lot of you said something so small to me before we started recording that you didn't know, but for me, it was just incredibly hopeful. Then we said we were gonna start talking about it, but then you went right into the hellscape that is your life. So it was it was hard to it was hard to pivot away, but let's take a break for half a second. You thanked me for the podcast not being on video.
Yeah. Yeah. Because all the podcasts are on video now, you know? And I just like, not only is that so wildly unfair to the people who are talking, but also I'm not interested in watching you speak while I'm cleaning. I just wanna hear it.
You know? I just wanna hear your voice, your dulcet tones podcast, you know, pod save America or whatever I've got going that day.
100%. I don't understand it all. And and and so if you're around it enough you know, I tried to say something to I was I was interviewing this girl the other day, and she's like, you know what I'm and she notices something about the world. Right? And I realized that she's 27.
This is the first time she's noticed it. Humanity has noticed this thing a thousand times already, like, generationally. Right? Right. It's her first time, and God bless her.
That's Yeah. But the same thing goes with podcasting. I've been doing this a long ass time. Okay? And about once every eighteen months, someone jumps up and goes, the new world of podcasting is video.
You gotta put your podcast on video. If you don't, you're gonna be left behind. Blah blah blah blah. And every lunatic runs out there and makes a a podcast, and no one watches them.
And Yeah.
And, like, and you're getting confused by the seven that people actually pay attention to. You're not gonna get hundreds of thousands of downloads on your podcast. Your YouTube you're even, like, around diabetes. Like, listen. If you're gonna make a YouTube video about diabetes and you're not leaning hard into technology and promising the future or yelling about a cure, no one's watching your damn video while you talk to somebody about their diabetes.
Okay? Right. Like, it just doesn't work that way.
Right.
Audio works great.
Right.
Yeah. It it's fantastic. And I appreciate it because I have I have persevered through that pressure probably six times, and it Yeah. And it was hard a couple of times to ignore because I really felt like, oh, if I don't do this, I'm making a, like, a a, you know, a deadly mistake for the show, but not the case.
I mean, I I think that as an audience member, it just it it also is like, you know, I I, for the ADHD brain, being able to just listen and not get distracted by what the person's wearing or what makeup shade they have on is really very helpful. Yeah. So I think it's a more effective form of communication.
I think it's more personal. It builds I mean, there's an intimacy to it. Yeah. You know, you don't you don't know what I look like. It doesn't matter.
I I'll tell you this. I don't really talk about this much, but I'm so glad not to know what the people look like who I'm interviewing because I'm not certain that I wouldn't jump to conclusions about them.
Yeah.
You know what I mean? And then just getting to talk to them, it it allows them to be, like, who they are without all the facade stuff. Yes. I think that's really.
Think so too. I I find that even so so I made this so I'm on Instagram, as many of us are, and I made this video about how our 11 year old stuck some toothpicks in a carpeted stairs this winter right after holiday season watching Home Alone 1,000,000 times, made kind of like a Home Alone style trap. And it wasn't it wasn't supposed to be for the nine year old, but the nine year old ran down the steps, got a toothpick stuck in his foot, pulled it out, and and says, okay. I got it out. It's out.
But he's in so much pain. He's not walking. Anyway, it's a whole saga that takes four months for an MRI to finally happen, and there's a two centimeter piece of toothpick stuck into the kid's cuboid bone in his foot.
Really? Ugh. Was it mint flavored? I hope not mint flavored.
Yeah. No. We would have found it sooner. Yeah. It would have smelled better.
No. Nope. It was just a regular old toothpick, but he couldn't walk, and we had been going to see a podiatrist. And she had done one surgery, thought she got the toothpick at whatever. Like, she thought maybe some fragments remained, she had pulled those out.
She was like, he's fine, and then he still wasn't walking, and it's April, Oh
my god.
There's it's a whole saga, but I made this video about it on Instagram, and it has gotten like and I thought, okay, I have 600 or 700 people who follow me. It's all friends and family. They're gonna see that. I'm gonna explain why William's been on crutches for six months, you know, whatever. Mhmm.
And then one it has, like, 1,800,000 views. So that's insane.
Yeah.
And the comments are wild. Oh, You
know, your
child's a psychopath, you're a terrible parent, all this stuff. And so I've been thinking a lot about, like, anonymity and intimacy in the age of podcasts Mhmm. Social media. And I've also been kind of like, I have some new followers, and so I've been kind of like, okay, I'll I'll I'll do some more Instagramming. And I find, and this relates back, I find that I'll just like be speaking to myself on the phone saying these like deeply intimate things, like about how isolating medical parenting is that I would never say if I were speaking to a room of 700 people.
Isn't that crazy? Yeah.
It's such a it's it changes the whole game to to be just to not be looking at the people that you're speaking to.
Yeah. No. I mean, it's it's it's helpful for you to and by the way, there's some level of craziness that allows people to do that. I've I I don't know if this is still true, but I I heard in the past when I was I was just writing a blog. It was a long time ago.
They said that I was I was trying to talk about why blogs don't get a lot of interaction, and I was told that it's, like, I guess, proven back then that only a very small percentage of society has whatever it takes in them to actually comment on something. Yeah. And it's a very small percentage of people who can bring themselves to do it even.
Yes.
You know?
Interact in any way.
Yeah. And so the people who are willing to to, like, initiate that, I think that number is even smaller. Probably doesn't seem like that, but when held up against the totality of, you know, of humanity, it not not many people Like, I have that feeling a lot when I'm making this. Like, I'm talking and there's part of me that's like, why am I saying this? Like like like, why don't I just go get a regular job?
Like, you you you know, and and but then I don't know. Like, first of all, a, I see how it helps people, and that's Yeah. Really invigorating. And then b, it makes me feel better to Yeah. To get get it off my chest sometimes.
You know what
I mean?
Or to be honest about it.
I do know what you mean. It has felt really liberating to say those things.
Yeah. Yeah. A 100%.
I do I I said this in my email to you, but, like, I do, like, the the second words out of my mouth when I get put in touch with a family who's newly diagnosed or, and then you'll and then you'll look up the juice box podcast.
Aw. Thank you.
And and it it does. It just helps so many people. And I sort of hope that we're gonna go. So we so we're leaving at the end of August, we hope, to go sailing again. And and part of part of it is to just sort of show our kids, and hopefully to show whatever small corner of the world, you know, knows our family or watches us on Instagram, that that you can do these things
Yeah.
When you're living with a life threatening chronic illness, and that you can pack enough insulin to live on your boat. And yeah, and that's sort of what the your podcast has done in so many ways for so many people. Is that you you can do this. You are going to get through this.
I hope so.
And that you're gonna find joy again.
Yeah. Right?
I mean, that
It just is that's what's gonna happen. It's it you I don't know. I I always gets I that's there's a stupid, like, country song from the seventies about, not promising somebody a rose garden. And, like and I think it the the the lyrics like, I beg your pardon, I never promised you a
rose garden. Oh, yes. Yes.
Yeah. Yeah. And and I just I think about life like that all the time. I don't maybe I just think about it like that because I heard that song. I have no idea.
Yeah. Because it certainly wasn't through good parenting. But but I but my both my parents are gone now. It's okay if I say that. Right?
But but,
I mean, your your expectations are what ruin your experience.
Yeah.
That's all. Like, go on the boat. If it goes great, awesome. If it goes less than great, just decide that that's great and keep Yeah. You you know what I mean?
Like, none of my stories involve how great everything went.
Right. Right. Well, and at this point, I've I've gotta be honest. Three of my four kids have type one diabetes. So, like, I my expectations are pretty much in the toilet.
Yeah. Like, if if a wave knocked you into the water and then a giant shark from this Comedy Central movie showed up, you'd go, oh, this is what I thought was gonna happen.
Yeah. Oh, your name is Roger. I've been waiting for you. I've been expecting it.
Yeah. I can't believe it took this long.
Yeah. Exactly. Exactly. Yeah. Yeah.
I, you know, as we as we gear up for this, people are sort of like, what are you thinking? Nah. And I'm like, what the fuck? I'm gonna stay here, you know, and and watch my sugar pixel all day and text with the nurse 750 times. I could just be in The Caribbean Yeah.
Without a sugar pixel.
Let's go do something.
Go doing something. Yeah.
I'm with you.
Brimming With Spontaneous Joy45:06
Yeah. I think it's important. And I think that that so when our when our first child was diagnosed with type one, you know, it's it's 2018. Life is crazy. I remember so vividly saying to my mother-in-law, you know, we're never gonna be spontaneously joyful again.
We're never just gonna pick up and be able to go. We're never gonna have the life that we imagined. And it certainly is not the life that we imagined, but it is absolutely chock it is brimming. It is over it is overflowing with spontaneous joy.
Jenny said to me the other day, I don't know if we were being recorded or not, if we were just talking. She's like, I think every type one should just have a bag. It should just sit by the door, and it's so that you can just leave.
Yes.
You you know? Just Yes. Grab like, okay. You're gonna have to grab insulin probably. But Yeah.
Grab the bag and go. Come back, drop the bag there. And then it allows you to be, like, mobile like that. I listen. I watched Arden go out the other night.
She went to a friend's house. They went from the friend's house to a club. They went from a club back to our house. Like, you know, they were they were all over the place. She did she have a little, like, lunchbox with her full of stuff in the back of her friend's cart?
She did. But I watched her. I wish I could I don't know how many people, like, know what my daughter looks like, but, like, she's really pretty.
She's really beautiful.
Yeah. Yeah. Yeah. And and dropped her at her friend's house. Right?
So she said, can you take me and my boyfriend and my friends? We're gonna leave from there. And I was like, yeah. Sure. And she's like, she'll bring us home.
I was like, okay. Sure. So I drop her off, and, you know, the parents are there. And so I get out of the car. You know what I mean?
You'd like, because it feels weird to, like, pull into someone's driveway and just be like, I don't know you. Goodbye. So, like, you get out to say hello, and I'm saying hi and introducing myself and everything. And Arden comes around the side of the car. She looks like a model.
Oh.
And she is holding a green lunchbox. This ridiculous thing. And she don't think the first thing about it.
Yeah.
Yeah. And she she said, I I put it in the back of the car. And, you know, and by the way, interesting story. You know, the amount of time she carries that stupid thing with her to this and that or it's in a car somewhere, you know, whatever. You put, like, insulins on ice somewhere in a car in the summertime.
For all the time she's done that, I don't think it's really been a problem ever. You more often than not bring the bag home, set it down, you never touched it.
Yeah.
But we were having dinner last night, she goes, oh, you know what happened to me last night? It hasn't happened in such a long time. I was like, you know what? She goes, I was climbing in Kat's car, and I knocked my pot off.
Yeah.
And I went, no kidding. What'd you do? She goes, I just put another one on in the car.
Right.
That was it. Right. Yeah. I mean, you can choose to see that as it getting in your way, or you can just not choose to see it Like, that
the routine way that she experiences it. Right? Like, let's zoom out. Oh, the life saving medical device that keeps you ticking fell off. And so you put another one on.
That's kind of momentous. But for all of us and for her, for the people who are living with this thing, it is just, oh, yeah. Then I put another pot on in the car.
No. No.
I mean, that's that's that's huge and routine all at the same time.
And for us and for the other people looking, I do think perspective would help you. I mean, really. Yeah. I mean, is it 1920 when they introduced it, like, they found insulin? So, you know, like, my 21, almost 22 year old daughter had that experience.
It was a moment where she had to like, she was like, oh, that thing came off. That sucked. And then filled up another one, put it on, pushed the button, back on her way again, as a as a computer inside of a computer is taking care of it for her. And she's only 120 some a hundred and some years removed from she would have been dead when she was two?
Yeah.
Like, how is this not a celebration?
Yeah. You know? It is amazing.
Yeah.
It is I mean, my kids hop on their bikes every morning and bike to school by themselves. You know? Yeah. They walk home from school. They ski.
They're gonna go live they've lived on a sailboat. They're gonna do it again. You know, like, life is so full for all of these kids. And and that is a celebration and should be a celebration every day.
Where where do you, dock in Saint you know, in The Caribbean when you go?
We'll go you know, we'll cross over probably to, Turks and Caicos. Mhmm. And then we'll kinda buzz all over. We're gonna go to Puerto Rico. My mom grew up in Puerto Rico, so we'll spend a little time there.
Nice.
We'll kinda hop around.
Can I suggest for an incredibly chill hang? Yes. Please. Saint John.
Great. My goodness.
There is a little bay called Maho Bay. If I was you, I'd find out how to anchor off of that and swim swim. It's just really
Do It All, Just in Case50:00
small. Yeah. When my husband Ben was, like, 19, he had to he did a year of college, and then he was asked to take a little break. And he did, and he fixed up a 26 foot sailboat. He named her Ruby, and he sailed her by himself.
A friend was supposed to go with him to sail to the Caribbean. It was like a ten day sail. The friend got so seasick that Ben had to turn around and drop him off. And Ben sailed down and and lived on Saint Thomas Mhmm. In this, like, decrepit old sailboat that he had fixed up.
And so that has always been there for him, that that was such a, like, truly monumental thing in his life. And we were doing couples counseling this fall, as one does, when one has three kids with type one diabetes. And and I was like, look, I'm I'm feeling ambivalent about this trip, you know, like like, we're talking about it. How's it gonna work? I don't know if I wanna do this again.
And he said, here's why I wanna do it. Because I did it when I was 19, and it changed my whole life. And our kids are gonna survive. They're gonna be fine.
Mhmm. But they do have a
chronic illness that sometimes kills people, And I want them to go out and do it all just in case. You know, I want those kids to just do everything and anything that they can. And this is gonna show them that they can do everything and anything that they wanna do.
It's thoughtful. I'll tell you, Daphne. It's thoughtful because after having close to 2,000 conversations with people, what I can tell you is that not everybody makes it, and you don't know who you are.
Right.
You have no idea which story is gonna be yours, and the best you can do is hope to try to, I mean, point it in a direction. Right? Yeah. But there's just the makeup of people, you don't you don't know what it is. Like, I don't believe that there are people in the world who are, I don't know, struggling and then somebody not struggling.
The difference is that the person not struggling is trying and the person who is struggling isn't trying. I don't think it's I don't think it's that simple. I think it comes down to a lot of things. I mean, we can list them all, but I mean, from education to intellect to opportunity and and support and and probably literally, like, a 100 other things that you could list. And and life is is so variable that you really don't know, like, which one you're you go talk to a 90 year old person who's got four kids in their forties and say, did you always know this is how they were gonna end up?
And they're gonna go, no. I had no idea. Like, I thought I did, but none of them were exactly the way I thought they were gonna be. And then they they meet outside forces in the world that that change their direction again, and you can't get in the way of that. Like, you can't you know what I mean?
Like, I can send Arden out into the world perfect. And if she meets some guy who's crappy to her, could ruin her life.
Yeah.
You know? Like, that's not a thing I planned I could plan for as a as a as a as a parent. People might make the argument, like, well, you could have made it so she didn't choose him or but I don't think you're in control of stuff like that.
No. Yeah. No. And and that is one of the the the it's not a silver lining. I hate, like, when people are like, well, the silver lining is, or, oh, well, at least the kids have each other to go through it.
Like, fuck off with that. Their pancreas like, organs don't work. You know? As a parent, something that has been a gift of is the perspective on I can't control so many things.
Mhmm.
Yeah. But what I can control is giving my kids my love and my attention and my time, and I can, you know, make it work to go do these things with them. Yeah. And that's what I can control. I can't control whether or not their pancreases work.
They're totally fucked. Yeah. But what I can control is that they're gonna live really cool lives right now.
I'm with you.
And I hope I give them the foundation to go off and and and do that for themselves.
Yeah. They should hopefully feel comfortable, believe that things are possible, and then go apply who they are to that possibility and see what happens. They Yeah. Yeah. But no.
I I listen. I there will be times that you look up and think, oh, they all have it. They're actually helping each other. Maybe.
Right. Or Right.
Like, it's a nice thing to say. Like like, if that all goes well, then you'll have three kids who are real supportive of each other with their diabetes. I also talk to a lot of people. I'm like, hey. Your brother has diabetes too.
Do ever talk to about it? No. I've never talked to him about it. Yeah. We don't talk about that at all.
Right. Yeah. Right. Actually, my my my sister has it, but she doesn't take very good care of herself. I'm like, why don't you help her with it?
Yeah. I don't know. Yeah. So you don't know how it's gonna go. No.
Stop it.
No. You have no idea. You have no idea. And and, like and that's what makes it a like, that's a universal parenting thing is you have no idea Yeah. What's gonna happen next.
So I'm with your husband even though I'm sorry. I don't mean to take sides. But yeah. I'd get I Yeah. When you say you're ambivalent, is it a little bit about been there, done that?
Like, we've done this already and it's a lot of effort. Can we do something No.
No. It was like, we have a good thing going. Our kids like their school. We've got a good community. We've got good school nurses.
They again, they walk to school. They bike to school. They have these really wonderful lives, and and it's a heavy lift to go off and do this. And it means, you know, it it it's a financial lift. It's an emotional lift.
Mhmm. And I so so I was just kinda like, how are we gonna make this all work? And why are we gonna make it all work when when life is like when life is finally feeling a little bit manageable again? I Why do we do this every fucking time?
I gotta tell you. I got I I gotta leave for Miami in two days to go on the cruise with about Oh, that's amazing. A 100 listeners. Yes. Once I get on the cruise, I'm gonna be like, this is great.
But every day this week, I'm like, why did I say yes to this? Yes. That's all I can think. I'm like, I I gotta get on a plane, and I gotta pack this damn bag, and then I gotta prep the show ahead of time so that I can go and like Yeah. I don't wanna I don't wanna I don't wanna do this.
I don't wanna do this. And I swear to God, I'm gonna step on the ship, see the first person. They're gonna smile, and I'm be like, this is such a good idea. Yeah.
I'm going to move on to that boat, and I am going to think, okay. This is what we were supposed to do. Mhmm. But you better believe that every day until then, I'm gonna complain to my husband about how much fucking time he's spending working on that boat. You know?
This is your fault. If it goes wrong, I'm definitely blaming you. But I'll tell you, if you can't handle that, don't marry a lady. I'll tell you that right Yep.
Yep. So here is and what I one of the things I wrote down that I wanted to talk about was like and I this has been mentioned on your your podcast before, but like, our number one rule, like, the only rule for us is you do not blame the other person about anything to do with diabetes.
Yeah. It's good
for you. You know, that but, like, that doesn't extend to the rest of life.
No. No. Of course not. Blame it. I don't Everything else
is Yeah. Up for Absolutely.
My wife asks me why I do things sometimes, and I'm like, I've been doing it that way for twenty five years. You've never noticed before. Like, why does it matter today?
Because we've run out of other things.
Oh, she's and she's like, I would do it like this. I was like, feel free.
Yeah. Yep.
I'm not We I'm not married to
this. Like
this. Yeah.
Yeah. Yeah.
No. No. I mean, I don't how long you've been married?
Fourteen years.
Oh, god. I got you beat by twice.
Yeah. Yeah. Yeah. Yeah. I mean, it feels like it's it feels like it's been so long and simultaneously, it's such a fucking drop in the bucket.
But we do we have been together for fourteen years and I do he is still my absolute everything. Like, he is the person for me. And I think that that's been a really beautiful part of this experience Mhmm. Is that it drives so many people apart. Yeah.
Sure. It it's so hard. It's so hard.
The Divorce Statistic57:56
The the stat that I was told when we were diagnosed, when Orden was diagnosed, one in two marriages end in divorce, but two in three marriages end in divorce when they have a chronically ill child.
Yeah. That's Did your endocrin did your endocrinology office tell you that? Yeah. Because I think ours told us that. And I was like, why are you saying that?
Yeah. I did. I was not thrilled when it was brought up. I was like, hey. My kids had diabetes for three weeks.
Like, can you hold this good news for a couple of months maybe?
Fuck the fuck, bro.
Yeah. Having said that, I've said this before, we were in the first carb counting class in the hospital. And my wife and I walked out of it. We were dizzy. And she said, is Arden gonna be able to have babies?
And I said, do you think we're gonna get divorced?
Oh, god.
Yeah. That that's what I said. Well, that's what we that's what we said to each other walking from the carb counting in class back to our daughter's hospital room. Oh, man. It's upbeat.
I'll tell you.
Yeah. Yeah. There's a lot about this that's upbeat.
Can I share this with you, Maybe this is a great place to say this? I I have not said this out loud to my wife yet, so maybe I'm feeling this way, and I'm wrong. But we'll be in August, we'll be married for thirty years.
Wow.
And, we got married early, so I'm still pretty young. I mean, young compared to young compared to 90 year olds, not compared to actual young people. And, I am starting to have a feeling well, I shouldn't put this on paper. I should probably leave me in three minutes after I say this. But I'm starting to I'm starting to feel like this is the beginning of the part where we, like, just have got so much time together that everything feels really comfortable.
Yeah. You you know, like, when old when you see old people together and they just, like, they're happy, like that. Yeah. Like Yeah. I feel like this is the infancy of that part.
Yeah. That's so beautiful.
I hope so. But she might be downstairs being like, you know, I gotta get rid of this guy.
She's she's actually writing out her list of demands Yeah. Right now.
Yeah. Yeah. Yeah. She's like, oh, you know what I'm gonna tell the lawyer? He can keep this, but I'm taking this.
Yeah. The house.
Yeah. Yeah.
The Oakland fridge. Yeah. For his GLP one pen.
He's he can keep his GLP in his pants. I think that's fair. Yeah. And I'm up here going, like, it feels like the beginning of forever.
Yeah. Yeah. That's how marriage is. At least sometimes you gotta be on the same page, but you can trade off other times.
We're just really synced up now. Like, it feels like we finally really know each other. I know I know that's a weird thing to say, but, like No.
I no. It isn't. Because how long does it take you to know yourself? You know?
Yeah. I mean, I just got to that recently. Right.
Yeah. Like, I'm just learning, and I'm almost 40. So I I I it does it takes a long time. And I do think that that having chronically ill children or a child does speed up the process, and that's why so many people get divorced, because it just takes you down to brass tacks. Right?
Yeah. Like, you are life I mean, we had a situation we were at at camps designed for, like, some respite for type one diabetics. It's a great camp, but they serve really high carb food, and it was really challenging. We don't eat low carb, but we eat lower co carb than that. Our kids' numbers were all over the place.
One of them, for the first time ever, he he crashed so hard. He was at 24, and he was passed out, and we were know, you we had to do backseemee, and and it was one of those moments that you have very rarely, but that you do sometimes have where where you just wonder if they're gonna make it. Mhmm. And and Ben and I looked at each other afterwards, and and we just had we had handled it together
Yeah.
As a team.
Yeah.
And that ages your marriage, like, four years in five minutes. Because either you're gonna handle it together as a team, and you're gonna walk out of it like, I love you so much.
Right.
Thank you for being my partner.
Yeah.
Or you're gonna hate each other.
Oh, no.
Yeah. Yeah. I think that's part of, you know, it's like a crucible.
I feel like again, I don't wanna speak for Kelly, but I feel like we're at the part now where, you know, we'll hold hands and walk into a volcano one day.
Yeah.
Yeah. Like, so but I I'm excited about this part. Extra, I I I'm happy to say this. You said you lost 50 pounds. You didn't say how.
But I I I think the GLP is really is gonna make the last part of my life a lot better.
Yeah. Yeah.
GLP, and Getting Back to Herself1:02:22
So
So I so I went on tirzepatide, and what it's done for me is it's also really helped with my just like my mental clarity. Like, and I just read a a article that people are saying this, that it helps with ADHD. It's better than any SSRI I've ever tried. It has just made it possible for me to focus on the things I wanna focus on, you know? Mhmm.
Walking every day for an hour, doing that stuff, get you know, it's been life changing in so many ways.
Yeah. I had a a a somebody close to me, started on it recently. They're just on a low dose. And I just said this in an episode the other day, but I'm gonna say it one more time because I think it was really interesting. She's got a a nervous stomach and is on a medication for that.
Right? And and she said I said, what are some of the benefits you saw this week? And she said, I haven't taken one panic shit. And I was like I was like, no kidding. She was like, haven't run to the bathroom once this week.
Wow. Was like, good for you. You should have saw how happy she was.
Yeah. Yeah.
You know? Like so Yeah. Know? Oh, that's amazing. Yeah.
Just small things. I again, I don't know what I'm talking about. I barely got through high school. But if it's not lowering people's inflammation and impacting things in all kinds of, like, interesting ways, I I I'm I'm crazy, you know.
So Yeah.
So we'll see.
No. It it is an amazing thing. And yeah. And it enables you to to, like, get through that initial really hard part where a lot of people get stuck.
Yeah. No. No.
You know? And and I think also as medical parents, sometimes you're just look like, I would get to the end of the day, and I would have just you know, it's it's it's a madhouse here. Mhmm. Like like, you can imagine. Right?
I have three little kids, 10 and under with type one diabetes, who are running around and jumping and mad and sad, happy and sad. The alarms are going off all day. I'm triaging almost every day Mhmm. With something huge. And I would get to the end of the day, and I wouldn't have really eaten, but but I then I would be by myself.
And how I was, like, giving myself love was by, like, eating a bunch of cupcakes. Mhmm. You know? Yeah. Eating bread and cheese for an hour.
Right? Like, that was the only space I had for giving myself some something nourishing Yeah. Emotionally and physically. And and this kinda and and I was really attached to that in a lot of ways. Mhmm.
And so this the experience my experience with Strengths Upside is it just kinda like it cut down that that noise and that need, and it gave me space to get back to myself.
Yeah. Also, it's probably so sad. You're probably eating cupcakes, filling the dishwasher, and then
passing out. Right? Like And like watching,
like, get oh, fuck. I'm gonna be
up all night because, you know I mean, like, because someone's high or someone's low or
you
know? And you're just kinda like yes.
Anyway That would've killed you eventually. Don't worry.
Yeah. Yep. Yep. Well, I here I am, still staying.
Well, the good news is you sound too tired to make more kids. So Well,
we did take care of that surgically.
Oh, I was gonna say. Yeah. Yeah.
Probably smart. There. Yeah. Yeah. They are great, but but it would be it would be another diabetic boy.
The world does need more, but I'm not gonna
be You you you're not gonna you're not responsible for
for filling them up. Other way. Yeah. Yeah. Yeah.
Also, I gotta think a boy who would jump on a sailboat and sail to The Caribbean seems really sexy. Right?
Yeah. Yeah. Yeah. My husband is He's tricking something.
He's tricking you. And he's
probably smart. Man I know.
Yeah. Yeah.
Yeah. Brilliant. He's a he's a an excellent lawyer. He can fix anything. He's fabulous.
And, you know, I mean, we started looping, speaking of diabetes, in 2018 with a two year old. And our endocrinology practice the the head of the endo practice called my husband and said, we're not gonna support you in that. You're gonna kill your kid.
Oh, in Maine.
In Maine
too. Right? Yes. I gotcha. Yeah.
Yeah.
So so then we called Boston Children's, and and they were like, of course, we'll take you.
You know, it's in the ADA it's in the ADA guidelines now that they should they should support people using do it yourself algorithms.
I didn't know that.
Yeah. They just put that in the the guidelines. People have been fighting to get that in for a while. It's really
cool. Wow. Yep. It is really cool. I mean, the the world of diabetes advocacy is really cool, and I I haven't had any, like, time to dip my toe in.
Though I do hope that that somehow on this trip I can kind of wrap in, like, some advocacy. But I it is amazing what people accomplish, and it's so true because because Loop has Loop made it so that we could get some sleep, some nights.
Yeah.
Right? If we had just been on the Medtronic or whatever, the Omnipod, you know, initial offering, we wouldn't have slept ever.
Right. No. It would have it would have eliminated shots, and it would have given you control of, like, temp baseling and stuff like that. But I don't know. Like, listen.
You would have to be pretty special to act as an algorithm for three different kids. You know? Like, setting temp yes.
I I don't I I
don't think I could do that either. That's that sounds mind numbing, especially because you're still also being their parent and their Yeah. Yeah. And all the things aside of diabetes.
And you're trying to run a household, you know? Yeah. You're you're doing all that. And and because we're in Maine, you know, it's a it's a pretty small there aren't a lot of people here. There aren't a lot of people who have.
I think we're the only people in the state who have more than two kids in a family with type one. So you don't have a real I I I have a great group of moms who they each have one type one. We've got a great text thread. But but that's what's a little lonely about it sometimes is that even I I found myself we were at that diabetes camp, we had that huge crash out, and we were sitting in the parent support, like, room, and I was like, oh, I'm actually jealous of everyone here because they only have one kid.
Yeah. How crazy is I was how crazy is that parents with a child with type one diabetes don't really understand your situation.
Yes. Yeah. Yeah. Yeah. Because you just can't.
So let alone, like, your average bear. You know?
No. No kidding. Oh, it it just hit me the way you said it like that. Like, even like, in the niche of a niche of a niche, you're still a niche. Yeah.
Yeah.
Yeah. I I mean, like, what are the chances? You know? What are I they're really low. They can't be good.
20,000,000 or something. Be good.
One in 6.8 Million1:08:45
Can they? Is there a way for us to figure that out? Because they I
think there's a there's a way we
can figure it. Can't be good chances. Hold on a second. What, let's see if we can do this. What's the statistical chance of having a child with type one diabetes?
How does it change if you have four kids? This is what I wanna know.
I wanna know this too.
Yeah. Let I'll ask our overlords and see what happens. By the way, this this thing's gonna ruin, like, legal assistance. Yeah.
Yeah. Claude has eliminated all lawyer needs. Yeah.
That's crazy. How are they gonna learn? Oh, isn't that how you learn by doing the lower stuff?
Yes. Yeah. No. I think it's a disaster for the legal profession. Yeah.
I think I if I were in law school I mean, if I were, like, in my first year of law school right now, I think I would pivot real fast.
Well, I mean or somebody's gonna have to nerve have the nerve to run a to run a shop where they don't use it and so that people can continue to learn. Or or Yeah. Or have the nerve to pay people to do redundant work so they can learn. No known t one d family history per child risk one in three hundred, which is point three three percent. Chance at least one of four, one point three percent, one in seventy five.
Hold on. While I'm reading this, I'll tell it. Now tell me the chances of three of four children. I'll read through the rest of these while it's doing the math on that. Also, I'm using chat GPT for this.
Yeah. I was
wondering with the clot or chat
I I don't listen. My clot is is personal between me and him. I don't I don't let other people into my Claude. Okay? And that that's that.
That's for me. Okay? Y'all can't have that. That is exactly how I feel. First
degree That's my friend.
Oh, yeah. Yeah. No kidding. Do you see Claude made my website over? Yeah.
First degree relative with type one, one in twenty, five percent. You don't even have any of this, but if you had a first degree relative, it would it goes to one in twenty from one in three hundred, basically, per child. It that would give you a eighteen point five percent chance of all, of one in four having it. A father has type one, puts you at one in seventeen. Mother has type one child born before she was 25, one in twenty five.
Mother has type one child before born after she was 25, one in a hundred. That's interesting.
Yeah. That's fascinating.
Both parents have type one, ten to twenty five percent. Now here's here's where we care about. Right? Assuming you mean exactly three out of four children using the general population estimate of one in three hundred per child with no known family history, the math is my god. The math is crazy.
Your you have a one in six point eight million chance for a family of four children to have three kids with type one diabetes.
Yeah. It's Aren't I lucky?
It's point zero zero zero zero one four eight percent. That's that's just Yeah. Yeah. Sorry.
The Toothpick Saga1:12:01
Yeah. What about if what about the chance of then one of those children having a toothpick stuck in their foot?
Okay. Hold on a second. You're making a good Yeah. What are the chances of one of those four children of getting a toothpick stuck in the bone in their foot in a home alone style attack. I don't think it's gonna have an answer for that, but since we're here, I wanna look.
Yeah.
I can tell you there's a hundred percent chance of it happening.
It's gonna happen at my house again next week. By the way, do you punish the kid who put the toothpicks in?
Yeah. Yeah. I mean, you know, the the the toothpicks weren't geared towards towards any it was it was like a this is what you know, I don't even really know what was going on in her head. It was not geared towards anyone in particular, but that child did lose, all privileges, was not allowed to go to birthday parties, and and did all of the chores of the other child, and had to stick by that child's side day and night for four months. So Wow.
There were certain I mean, because because, like, you have to learn that, you know, impact is different than intention, and the impact here was so wild. My child had the the kid who had the tickling his butt had two surgeries, a six day hospital stay. You know? It was like, it has been a nightmare.
Yeah. I think for all of you who are still not sure about AI, I I wish you could see the thoughtful answer it gave about my stupid question.
Wait. What it say? What did
it say? There is no real statistical table for a child gets a toothpick stuck in the bone of their foot during a home alone style attack. Medicine tracks things like plantar puncture wounds, retained foreign bodies, infection, and osteomyelitis.
Yes. Yeah. He had that. Okay. He had osteomyelitis.
Not not, and this is in quotes, Kevin McAllister assault by toothpick events, which by the way, I didn't mention Kevin McAllister in my question. But the math structure would be this, chances at least one of four children has an event. It shows you the math where you would use to figure that out. For rare events, that's basically four times p. So if the chance for one child were made up, so made up per child risk, one in ten thousand, chances of at least one in four children, one in twenty five hundred.
A real world anchor plantar puncture wounds themselves are not insanely rare. One emergency medicine survey found that forty four percent of survey patients reported at least one previous plantar puncture, excuse me, plantar puncture wound, though that includes normal stuff like nails, glass, thorns, splinters, etcetera. In that study, ten infections occurred among a hundred and fifty six wounds. It gives, you know, links where you can go read more about that. Foot puncture wounds infections are often cited around, around up to ten percent, and the bone infection infection or the osteomycitis, is a known but much rare complication.
You can go to a a PubMed article to learn more about that. But a toothpick penetrating deeply enough to lodge in a bone in is way, way narrower than stepped on something sharp. So the honest answer is statistically unknowable, but almost certainly far less likely than one of four kids getting type one diabetes and likely closer to a freak accident territory than normal household risk, unless, of course, one of the children lives with Kevin McAllister. Then all bets are off, it says. So you
can Thank you.
You can make fun of AI if you want to. Think that's awesome. Yeah.
That is awesome. Yeah. Thanks. That is awesome. We this this experience with the toothpick would like, was so wild that then there was this dark turn where they finally found the toothpick lodged in the foot.
You can't see wood on x-ray and ultrasound, but those were the only imaging that they did. Mhmm. So finally, he still can't walk. It's April. They do this the MRI.
They find a piece of wood. The the doctor goes in to get the piece of wood, and next to the piece of wood, there's very clearly on the MRI a spot of osteomyelitis, which is a bone infection. And the poor doctor biopsies the wrong part of the bone. So she doesn't get a sample of the bone infection. So then we don't know what bacteria caused the bone infection.
So then we're in the hospital on IV antibiotics for my poor, know, nine year old trying to figure out what antibiotics we should even be giving the kid because they biopsied the wrong part of this teeny tiny bone in this teeny
tiny type one diabetic foot. She's probably in there. She's like, I don't see this damn toothpick. I'm like Oh
my god. Yeah.
She's got a life too. I think about that all the time. You started talking about doctors and what they don't know. I think about it a different way. I think she's in there.
She's looking in that kid's foot, and in the back of her head, her her dog just got hit by a car, and her husband wants to go for a thing. Like, she got a whole life too. Totally. Yeah. Yeah.
Yeah. Then and she's trying she's digging around in there, and she got it's the week before her period. She feels bloated.
Oh my god.
Yeah. Yeah. She's like, oh god. Like, I just I don't know how anything's getting done. That's that's all.
You know, we we have we do, like, a concierge doc through our insurance now, and and she came into our lives and has become, like, a dear friend. And and that has been, like, so helpful in giving grace to doctors because she has her whole life going on that I now have a little peek into. You know? Yeah. And then at the same time, she has my texts.
Okay. Now we're at 2.1 ketones, and he's still throwing up. I've given him the Zofran. What do you think? Should I head to the ER?
You know? And then her kid's screaming in the background because he also has so I I agree. They're only human.
It's just a it's a it's a tough situation. It it it genuinely is. I, you know, I go back and forth on it, and I don't I certainly want people to work. I think I could tell you that I think that people are inherently better when they have tasks and things they're proud of and things to get up to do and all that stuff. But some of this stuff is gonna be better when, you know, when a computer Yeah.
When a
computer is
making yeah. When the robots take over. Yeah. Yeah. Because Yeah.
Because, again, I I don't know how many times I can say it. You can't hold all that information in your head and and this thing can.
No. And that Right.
That's that's the difference.
So Right. Well, and that's and and I've I've actually relistened to your your interview with doctor Beach Gem, the other day.
Yeah.
I don't know. Was that December or something? And I was thinking about what you guys were talking about and how, you know, you were saying you come out of med school and you you can only ever have, like, pieces of something, and yet we walk into the ER expecting them to know everything about everything.
That's insane. Yeah. It's But it would be like if I said to you, you need to understand all the code and law
that Right.
Yeah. It off the top of your head. And not not just off the top of your head, but by the way, I want I wanna be able to send a crying child who's bleeding from his leg into a room while the mother's standing over his shoulder. And I'm gonna yell at you about different passages of law, and you need to, like, get them right the first time, and it has to apply to the thing I asked you. Can't you can't
be Yeah.
That's insane. I mean, it's it's great, and I'm happy people do it. But if you don't think that that can be judged up a little bit, you're not paying attention to how all this works. Yeah. So Yeah.
You know what I Go ahead. Go ahead. I'm sorry.
I I mean, I just think that AI should just exclusively be for medical purposes. That's I think we should just regulate it so that it's just because it has so many fascinating, fabulous medical applications. What's not so fabulous about it is, you know, people, only communicating with their husbands via text that Claude wrote for them.
I Well, that stuff is freaking me out. Like like, I'm I'm like, I don't think anybody's even talking to each other Like Yeah. Your your AI is talking to their AI. Like Right. We we don't do we need you?
Or, you know, like like, what and and that's a a disturbing consideration. I also if it's gonna pick bombing targets, I'd like a person to look over it. Stuff like stuff like that.
Yeah. Yeah. Fair.
But but if it's just if it's just parsing through a ton of static information and say and delivering back what is, like, appropriate, then let's put all the money into figuring out how to do that well. Like, Right. That I think is a great idea. I just don't know that I just don't know that top down that's how we think about health. No.
Like, like, it's easy to say you know, it used to be all the time people would talk about, like, I gotta let you go. This has been forever. But, like, people talk all the time about, like, you know, we don't do preventative enough.
Yeah.
Humans don't do preventative. Like, it's Right. It's it's not a failing of the health care system. It's how people think. Like, people think like your husband.
Like, it's gonna be okay. Let's go.
Like
like, go go go go. No one thinks I should probably eat well today so that I don't get colon cancer forty years from now. Yeah. No one's thinking like that.
Yeah. No. Yeah. No. Because we're just humans.
We're all just humans.
Yeah. Nothing wrong with it. But, like, you know, like, it's just I I'm stunned by how many people I interview where I'm like, did you not like like, what because I'm a parent of a child with type one. When when her blood sugar goes up, I think about twenty five years from now.
Right.
But if if but I always try to put myself in the if it was me, I don't think I would think that way. And Yeah. And yet and yet when you interview somebody and you say, like, hey. When you had an a one c of 11 for four years, were you ever thinking, like, I'm doing damage to myself? And they they often go, no.
Not really. And it's not and I don't think it's because they don't care or they weren't trying like, I don't think it's any of that real. I just think it's how people's brains are wired. Like, let's go. I can do it.
I think that's where that phrase, I don't let diabetes stops me, comes from. Right. Yeah. Yeah. Yeah.
There are some people who mean, don't let diabetes stop me, so I take the bag with me. I'm ready in case something goes wrong. I pre bolus my meals, and that that's me not letting diabetes stop me. I think there are other people who say, well, I just ignore it cause I don't let diabetes stop me.
Yeah.
And, you know, again, all very human stuff. So alright. Yeah. I think it's fair to say that if my wife and your husband go, we should probably get together. I mean, this Yeah.
Yeah. We obviously, we get along very well.
Lot in common.
Yeah. Yeah. Yeah. I I mean, the rest of it, I'm not I'm not paying for kids. I just wanna I just want you to know that upfront, especially yours.
Mine are really expensive.
Yours sound extra expensive.
Yeah. Yeah. The cost per child is high here. So I wouldn't blame you. But he'll have life insurance.
You might wanna go more north and try to find even, a cheaper place to live if you possibly. But you seriously do you ever think of moving somewhere that
We we think about it a lot. Yeah. Yeah.
I mean Yeah.
I think especially as they get older, if we don't have a functional health care system in this in this country before it's you know, before they kind of age out of of our insurance and whatever else, we'll need to bring them somewhere where they can survive.
Where do you think of that as being?
Canada seems very appealing if they'll take us.
Where?
Canada.
Okay.
Ireland, you know, we we've got some we've got some Irish roots.
You got a stake there? Yeah. Yeah.
Yeah. So we've got some we've we keep trying to get our our we have one parent in particular who could get citizenship, and we're really leaning on that hard. My sister's in Spain, and once she gets her citizenship, because she married a Spaniard, I think we could kind of do a chain migration thing at some point down the line to get us over there.
Do you really think this could happen?
I do. Yeah. Or we can water world it and just
Just live on the live on the boat.
Live on Grace Hill Valley Pull
out of boat. Pull into the port.
That's right. Yeah. Yep. Just go buy that insulin over the counter and, eat low carb, and we'll be fine.
It's okay. Everything will be fine. Everything will be fine. Everything's fine. Thank you.
It's fine. Yeah. Yeah.
Oh my god. Alright. You're awesome. I really appreciate you doing this. Thank you.
Much. That was really fun.
Awesome. I'm glad you have a good time. Hold on one second. Okay?
Yes. Yeah.
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