#1287 Best of Juicebox: Do Hard Things

August 23, 2024Scott Benner

Anne speaks to Scott about her sons Adam and Alec, living with tragedy, type 1 diabetes and so much more. First aired on Feb 6, 2020.

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Scott Benner 0:00
Hello friends and welcome back to the juicebox Podcast. Today is a best of episode. This is, let's see Episode 303 it was called do hard things. It first aired on February 6, 2020 and it's with an this is a sad story. So ready yourself. This show is sponsored today by the glucagon that my daughter carries, gvoke hypo pen. Find out more at gvoke glucagon.com, forward slash juicebox. Today's episode is sponsored by Medtronic diabetes, a company that's bringing people together to redefine what it means to live with diabetes. Later in this episode, I'll be speaking with Jalen. He was diagnosed with type one diabetes at 14. He's 29 now he's going to tell you a little bit about his story, and then later, at the end of this episode, you can hear my entire conversation with Jalen. To hear more stories with Medtronic champions. Go to Medtronic diabetes.com/juicebox or search the hashtag Medtronic champion on your favorite social media platform. US med is sponsoring this episode of The juicebox podcast, and we've been getting our diabetes supplies from us med for years. You can as well us med.com/juice box, or call 888-721-1514, use the link or the number. Get your free benefits. Check and get started today with us. Med, hello everyone. Welcome to episode 303 of the juicebox podcast. Today's episode is titled, do hard things, and it's with Anne. You're gonna get to know Ann in a second. But today's episode is a little little different than some of the other ones, in that it will handle the idea of tragedy, and we'll be having conversations about loss. Maybe don't listen with your kids. Maybe you want to. You should probably make that decision. You

I'm not sure how long this is gonna go before you make me cry, but let's find out together. But I'm hoping, I'm hoping, no

Anne 2:12
or if I can get through it without crying.

Scott Benner 2:15
100% think we're both crying, but so just you can so that you can be aware of what I'm waiting for. I'm really I don't even know what to say about how amazed I am that you are doing this. I usually start the shows by having people just introduce themselves. Okay?

Anne 2:33
My name is Anne.

Scott Benner 2:37
Okay. Anne, listen. So and I received an email from you, probably going back to the summer of 2019, I think. And I'm, you know, your email started off so much like everyone else's. And, you know, I'm sitting somewhere, you know, doing something. I'm like, Oh, I get a note, I look at it, and I start reading it. I'm like, Oh, this is a nice note. It's going to be about a nice thing. And it was about a really nice thing right up until it sort of wasn't. And then my wife looked over at me and said, Are you okay? And I said, I just got an email. I don't know how to respond to it, so I guess let's start like this. You're married, I am okay. You have children,

Anne 3:31
three amazing boys, okay, the youngest of which was diagnosed with type one diabetes in 2013 and

Scott Benner 3:39
that's Adam. Adam, yes. So Adam was diagnosed in 2013 How old was he? Then

Anne 3:44
he was eight years old.

Scott Benner 3:47
Okay, so why don't we just talk about his diagnosis? How did it go?

Anne 3:54
Sure. Well, we looking back on it, we think that it had maybe been going on for a while. There were many, I mean, as is very commonly the story. There were signs that, in hindsight, we thought, Huh. Wonder how long this had been going on the weekend that we took him, the Monday that we took him to the doctor, followed a weekend in which he had run in a parade. The there's a community parade that we have. The Run was kind of a kick off to the parade. And we would always have the boys run. It's about a mile run. And so all the boys did it. We met them at the finish line, and when Adam got to the finish line, he did the run, bless his heart, but he couldn't. He kind of, he didn't collapse. He just sat down, and he had a really hard time getting

Scott Benner 4:49
up. More so, more so than your other two sons,

Anne 4:52
oh yes. Well, the others too were just, you know, excited. They want to go see the parade. And Adam was just, he couldn't. Get up. So my husband and I looked at each other. My husband actually hoisted him onto his shoulders and ended up carrying him to our next point. But Adam was yeah, we just it didn't we knew that it, something didn't seem right. And so that was a Saturday, Monday. My husband and I had decided that we were going to take him in just for a checkup. And our amazing pediatrician, I think, listened to some of the things that had been going on, and immediately had him did I did a urine test, detected sugar in the urine, and at that very moment, diagnosed him with type one diabetes. Prior

Scott Benner 5:42
to that, how long do you think you were seeing symptoms?

Anne 5:47
Well, it's really funny, because so this was Adam second grade year, and earlier in the year, I want to say the fall the his teacher had asked me, he said, Is Adam getting enough sleep? He seems really tired. And, you know, I thought, wow. And apparently the teacher at one point had a conversation with Adam, and Adam said, at the time, all three boys were sharing a room, or we had four bedrooms in the house. The boys shared one of the downstairs bedrooms. We had one of the downstairs bedrooms, and the upstairs we were using for a guest room in an office. And Adam told the teacher, he said, Yeah, my brothers keep me up talking at night. And as soon as So, the teacher relayed this to me, and I immediately, I mean, within a very short time following that conversation, we ended up doing away with the guest room in the office. Moved both of those things to another location, and had each of the boys had their own rooms. So, which I just thought was interesting. There was there were also a few instances of Adam having, that year, some unexplained stomach pain. And I don't know whether that was related to the type one or not, but we took him in a few times. It's the point where he was literally crying and doubling over and vomiting. He was diagnosed when we took him to the ER at one point with constipation. And I don't know whether that was a sign or not way whether that was, I don't so hard to look back and figure it out, is it, it, is it, is, but it was early on in his second grade year that, I think, you know, as far as our look back, it's when we kind of realized that huh probably was happening for a while longer.

Scott Benner 7:35
Wow, that's, that's crazy. So how did the the first couple of, you know, days and weeks ago, after you were diagnosed, how did you find the transition?

Anne 7:48
We were in shock. His diagnosis day, of course, was what we used to think of as the worst day of our lives. It was towards he was diagnosed in May, and it was towards the end of his second grade year, and so in my mind, I thought, Okay, I'm I thought I would go to his school every day, because the school wasn't going to do any of his shots. So I thought I'll go to school every day and at lunch or, you know, just be on call. I didn't live very far away, and it was, would have been easy for me to just pop up and do all the shots and so. And I, you know, we thought, okay, over the summer, we'll kind of transition him into doing this on his own. Well, we had an amazing school nurse who, at one point had bribed Adam to do his shots on his own, unbeknownst to me, he ended up actually within, I want to say, the first week back to school following the diagnosis. He ended up giving himself his own shots and learning how to do it much more quickly than I had anticipated. And you know, bless his heart, he just he stepped up and and did what he needed to do. And so you know that obviously it was a time of shock, I guess, to a little bit, but we transitioned very, fairly well, as far as you know, getting him to do the basics on its own right. It's

Scott Benner 9:21
interesting, isn't it, that a person who's a little disassociated from the whole thing is he, it's a much easier path for them to say, look, just give yourself the shot. And you're probably trying to protect him from whatever it is you're scared of in your mind, or, you know, like making him grow up too fast, or blah, blah, whatever it is we try to protect our kids from I guess it's very cool that the nurse was able to just say, Look, you know, you're probably gonna have to do this, so let's do it.

Anne 9:47
Yeah, yeah, yeah. We greatly appreciated that support, right?

Scott Benner 9:51
Did you guys have? Did you transition to a pump at any point, or glucose monitoring or anything like that? Yeah?

Anne 10:01
The glucose monitor and pump actually did not happen until after I started listening to your podcast in 2016 we had ordered a Dexcom in following the highest A, 1c that I'd ever we'd ever had with him in I want to say it was December of 2015 and we we didn't have great support from his provider. The provider's office is actually two hours away, where it was two hours away from the community that we were living in at the time, and so there wasn't a really, there wasn't great support there. They had briefly. They had mentioned to it following the the one visit that we got into where they told us that Adams a 1c December of 2015 ish, was, I think, 9.5 and I remember feeling shocked when I heard that.

Scott Benner 10:59
Was that a jump up? Had it been lower and it jumped on you? It had

Anne 11:02
jumped. It had jumped. And there were, I think, a few things that had led up to the jump, but, yeah, it had jumped. It was higher than it had ever been, and it was kind of an afterthought. It wasn't even the provider herself. It was a one of the dinners that was kind of checking us out of that appointment. She mentioned, kind of as an afterthought. She's like, well, you know, there is, you know, this continuous glucose monitor that you could try. And I just said, you know, I'm willing to do anything at this point. And so we ordered the Dexcom. They shipped it to us. And I remember thinking at the time, I wish I had read so much more. I mean, again, hindsight, but I remember thinking at the time, gosh, this is going to be something that actually sticks on him. It goes into his body. I don't want to. I didn't feel comfortable going through the process of putting it on him myself. And so I we received it in December of 2015 I waited until April of 2016 when I knew I could get an appointment and drive across the mountains without, you know, worrying about snow and bad roads. I waited until I could get an appointment at the Children's Hospital to be able to do a class to learn how to do it with someone else right there holding my hand so I had gold sitting on a shelf for five months.

Scott Benner 12:28
You know, there's been a number of people on here who have talked about their insulin pumps being in drawers or their CGM still in the boxes. I don't think that's incredibly uncommon. Yeah, but you look back and you think, Well, geez, you know, I'm interested. I'm interested in through those first number of years where you feel like you're doing it's a very common thing for people. They feel like they're doing well, right? Because people are taking their shots, they're counting their carbs and but they're not having the results they're looking for. But they don't feel like I can't. I always have trouble making sense of that feeling of, oh, we were doing great. And like, I was talking to somebody the other day who said, you know, my a one sees nine, but my doctor always tells me I'm doing great. And I wonder, like, there's a disconnect there for me. But I do think they're doing great in one respect. I don't know why the sentence isn't usually, hey, you're doing great. You're doing the things you were asking you to do, and everything. But here's what we could try to do, blah, blah, blah, to move forward. Like, I don't know why that part never comes, you know.

Anne 13:32
Yeah, the parts that always seem to come up in the visits with the Arn P would be, you know, meeting with her, looking back, okay, six weeks ago from today, at 415 Why do you think we had this spike? And I, you know, I just

Scott Benner 13:48
like, I don't know.

Anne 13:51
Yeah, yeah, I It's

Scott Benner 13:54
too retrospective. Maybe, maybe it's they just don't have enough, I don't know. They're not able to make that, that moment to moment decision, right, right. All right, all right. And have we? Have we gotten to the part where we're gonna start talking about why you're on the podcast? I think, I think we have, I think we are. So you find the you find the podcast. You I'm assuming that gives you kind of the courage to put the Dexcom on them. Can you tell me a little bit about that?

Anne 14:23
Yes. So I had taken the boys during our spring break to visit my brother in Nebraska, and my sister in law kept kept saying I heard on this podcast, and she would go in and tell me something kind of fun, and she kept saying that over and over and over. And over and over. And I was kind of like, okay, Jessica, what's the deal with your podcasts? And she showed me how to look at podcasts on my phone. And so it was that spring break trip where I'm like, hi, I wonder if there's any podcasts on type one diabetes. And I immediately found yours. Yours is the first podcast that I set up on my phone. I listened to dozens. Of hours, and this was beginning to mid April, and I knew I had the Dexcom sitting on our home. I knew that we had an appointment at the end of April to go to the Children's Hospital to take a class and help get that set up. We, yeah, I mean, we got it set up. I got him set up with the Dexcom, it continued to listen to your podcast. I guess. Sorry, I'm getting Terry already thinking about,

Scott Benner 15:32
I feel like I'm gonna vomit if it makes you feel any better. So I've never been nervous making this podcast one time. So I'll help you a little bit. So you you Adams a 1c was like, up in the nines there, and you got some you listen to podcasts for a while. You started getting his a 1c coming down. And it was really a turnaround for him. His health was was moving in the right direction. And you felt excited about it. And and and how long did did you have that feeling like, How long were you able to live in that that space

Anne 16:09
so late April of 2016 we got him set up with the Dexcom, and for the next several months we had the most success that we had ever had since the time of his diagnosis, I came to be able to figure out things that you would talk about on your podcast, like, oh, when he's playing competitive sports, his adrenaline is skyrocketing, and hence, his blood sugars would tend to go up to I'd start identifying things like that. I started playing with his basal insulin, you know, being able to just make tweaks to give him the best shot for success. We actually ordered an OmniPod as well that came in late October, and so he had been using both the Dexcom and the OmniPod for about two months, and we had his next follow up endo appointment on December 19, which was the first day of Christmas break, we lived 30 minutes away from the office where we were going to be seen by the doctor. It was actually a telemed appointment, because the doctor was in a children's hospital in Seattle. So on December 19, we got in the car. It was supposed to just be Adam and myself, but I worked in the community that the appointment was in, and so the plan was Adam was going to spend the day with his cousins. And my middle son, Alec, had begged and begged and begged to come with us. He the cousin dame. The cousins are very close. I relented. I let Adam, or let Alec, come with us as well. So I had Alec and Adam in the car with me. We were en route to his endo appointment. I was very excited. I knew that his a 1c we had had it checked in September. It had dropped. I was looking forward to seeing yet another job. Now that he was on both the Dexcom and the OmniPod, we were having great success. We did not make it to the appointment. The last thing that I remember is we were driving, and my car all of a sudden was not going straight. One of the boys asked me something. I have no memory of anything until I woke up in the hospital. I don't even know what day of the week it was, and I remember somebody telling me that we'd been in an accident and the boys had not made it,

Scott Benner 19:03
I'm sorry. How long was it between the accident when you woke

Anne 19:10
up? The accident took place on a Monday, and I don't I have no memory of being in the accident. I have no memory of being picked up by an ambulance and being taken to the hospital. I think that my family said that they had tried to tell me several times. I you know, obviously they had me pretty well medicated. I think it was the next day. I honestly don't know. I honestly don't know how long it was. That's just the first memory that I have after the boys weren't with me anymore. What

Scott Benner 19:46
were your injuries like?

Anne 19:54
The I had fractures, basically from head to toe, but they were all able to heal on. Their own. I didn't have to have surgery or anything like that. I had a brain bleed, just very sore. I was in the hospital for about a week, a little over a week, but everything, you know, everything healed up. There was some nerve damage to my face. I still, the left side of my face is still a little bit numb, but nothing in compared to, you know, I,

Scott Benner 20:32
I don't know how to talk about it with you. I, I feel like, what, what happened to you is probably, I mean, it's got to be one of the worst things that could happen to a person, right? Person, right? I don't, I can't as a person who has children, I I'm hard pressed to imagine something worse. I don't know how you sent me that email or or how you found the courage to come on and want to talk about this. I thought that it was a beautiful idea to talk about Adam and Alec a little bit. And, you know, try to try to remember and give perspective to to that sort of thing. So I'd like to do as much of that as you're comfortable with. And if you can't answer a question, just say, pass and we'll keep going. I guess it's been, it's been over three years now. Is that right?

Anne 21:27
Yes, it was three years this past December. Does

Scott Benner 21:30
it has it so far lessened in, in, in, I'm assuming, how painful it is. Does that get better.

Anne 21:43
You know, grief, I think, is just a very interesting thing. I cry just about every day, still not to the point where I can't function. I, you know, I, I'm fortunate I have a job that I really love. It's good to be able to throw my mental energies into something that I'm passionate about and that I enjoy doing. But, you know, has it lessened? In a way, it seems like it was still just yesterday that this happened. There are moments where I just feel overcome. And I think the day that I sent you that email, I just was having a moment and I but I just was overwhelmingly grateful as I was thinking about it. I thought, you know, Adam, we struggled with managing his diabetes. You know, up until April of 2016 I guess. But I was just so so, so grateful for the information that I was able to get through your podcast that I felt helped us give him the best chance at living in the best way possible for what we had no idea at the time would be his last few months of life. So does it get easier? No, has it lessened? I feel like I'm moving forward without as much shock, maybe not as much in a fog. But there are still moments where, you know, I think, and I think any parent who's lost a child would say, you know, and I anticipate this is going to be on, going on for the rest of my life, where you just you're overcome. You're overcome. How could this happen? You

Scott Benner 23:32
know, my son leaves for college, and for weeks and weeks after he leaves, my wife and I will kind of comment to each other. It's hard to put into words, right? But the The house feels different, I guess, is the way people put it. But there's, there's a palatable sometimes it feels like air pressure to me, or I don't know how to describe how being in a space where he is or has been recently feels different than being in a space where he hasn't been recently and and it's, I'm assuming, that's as close as I can come to understanding what you're saying. You know, can I ask your you have a son, a third son who's with you still?

Anne 24:23
Yes, Andy was not in the car at the time, and I think the only reason that he didn't come too is because he had basketball practice that day. He is now. He was 15 when our accident happened. He's now 18, and he's a senior in high school, and so he will be going off to college in a number of months with you tied to his belt, I'm

Scott Benner 24:44
assuming a three foot rope, right? Is that lady behind you? Andy, oh, it's my mom, and she'll be in class today. How? I guess, you know. How did it impact? Impact him.

Anne 25:03
Andy is the most even keeled child I think that exists. He obviously, you know, going from a crazy fun house full of energy to being the only one difficult for him, obviously, but he is. I used to

Scott Benner 25:29
hate ordering my daughter's diabetes supplies. I never had a good experience, and it was frustrating. But it hasn't been that way for a while, actually, for about three years now, because that's how long we've been using us Med, us, med.com/juicebox, or call 888-721-1514, us, med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor for OmniPod, the number one fastest growing tandem distributor nationwide, the number one rated distributor in Dexcom customer satisfaction surveys. They have served over 1 million people with diabetes since 1996 and they always provide 90 days worth of supplies and fast and free shipping us. Med carries everything from insulin pumps and diabetes testing supplies to the latest CGM like the libre three and Dexcom g7 they accept Medicare nationwide and over 800 private insurers find out why us med has an A plus rating with a better business bureau at US med.com/juicebox, or just call them at 888-721-1514, get started right now, and you'll be getting your supplies the same way we do. This episode is sponsored by Medtronic diabetes. Medtronic diabetes com slash juice box, and now we're going to hear from Medtronic champion Jalen.

Speaker 1 27:01
I was going straight into high school. So it was a summer heading into high school.

Scott Benner 27:05
Was that particularly difficult?

Speaker 1 27:07
Unimaginable. You know, I missed my entire summer. So I went to I was going to a brand new school. I was around a bunch of new people that I had not been going to school with. So it was hard trying to balance that while also explaining to people what type one diabetes was. My hometown did not have an endocrinologist, so I was traveling over an hour to the nearest endocrinologist for children. So you know, outside of that, I didn't have any type of support in my hometown. Did

Scott Benner 27:35
you try to explain to people, or did you find it easier just to stay private? I honestly,

Speaker 1 27:40
I just held back. I didn't really like talking about it. It was just, it felt like it was just a repeating record where I was saying things and people weren't understanding it, and I also was still in the process of learning it, so I just kept it to myself. Didn't really talk about

Scott Benner 27:55
it. Did you eventually find people in real life that you could confide in? I

Speaker 1 27:59
never really got the experience until after getting to college, and then once I graduated college, it's all I see. You know, you can easily search Medtronic champions. You see people that pop up and you're like, wow, look at all this content. And I think that's something that motivates me started embracing more. You know, how I live with type one diabetes,

Scott Benner 28:19
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Anne 29:32
the one that I feel like gives us strength, in A way, gives me strength. You know it he's and I think I look back on it too, and I think, gosh, you know, the first couple years, especially, I was so wrapped up in my own grief. It took me a while to realize I've I need to be more present for him. I didn't. Only know how to do that. He has been nothing but gracious in dealing with my shortcomings through that whole process. But he is continuing on, and he knows that both of his brothers have left a legacy, and he is very intentional about wanting to live to honor those legacies. And so I just, I couldn't be prouder of who he is and who he's become. It's, you know, something that has happened to him, but he's written, you know, in some of his personal statements for college essays and things like that, that it's not something that defines him. It's, it's always going to be a part of his story, but it's not he's he's not victimized. He obviously is going to be living with a big gaping hole for the rest of his life, but it's not anything that defines him.

Scott Benner 30:55
So the three of you are supporting each other, because each of you has a different tragedy. Really, it's, it's as I'm sitting here thinking about it, he lost his brothers, and then contact with you for a while, probably there's just an overall change in what his life is. But then at the same time, you're dealing with losing Adam and Alec, and you're dealing with, I'm assuming surviving an accident that they were lost in, like, that's got to be has to weigh on you as well, does it not?

Anne 31:29
Yeah, yeah, it absolutely does.

Scott Benner 31:33
Yeah. I don't know if there's more to that question. It just, it's occurring to me, as you're talking that, you know, that's got to be the next thought, which is, you know? I mean, it's survivor's guilt, right? Like it's why me? Why them, not me, you know, etc, like that. Probably, yes,

Anne 31:47
that's a question that plagues me. Has plagued me every day for the last three plus years.

Scott Benner 31:52
It's just random. Do you seek, um, have you in the past, or are you now? Do you talk to somebody, or do you kind of go back to your family for that support. How do you handle that?

Anne 32:01
Yeah, I did do some counseling for the first two years. You know? I think that that kind of ran its course. I have some amazing friends who continue to be just a wonderful support.

Scott Benner 32:26
Can I interject and ask you, before you tell me about your journaling, is it just, honestly, something that no one else can really understand except someone who's been through it? Yes, is that what you found through the counseling? That's kind of what I got in your pause, like, what am I gonna talk to a therapist about that? You know what I mean? You know, because I find myself in the same situation right now. I'm like, I have nothing contextually to compare to what you're talking about, nothing. And so I would think that trying to have that conversation with people who don't have that context must feel frustrating and fruitless. And you know, it's lovely to think that everything in world, in the world can be, can be explained away or gotten through or coped with. But, I mean, I don't know, like I I follow, don't know if you've ever heard the episode with a woman named Lynda Haller, who came on years ago, and yes and her her son passed away at school from you know, and I follow her on Facebook still, and she's very proactive about remembering her son. And at the same time, I just feel like this is, this is something that fundamentally changes your perspective on life, and I don't see anything else that could bend you back to where you were before. I don't and I can't tell that that's a bad thing or not. I don't actually think it is. I think it's maybe sad right from the outside, but for you, I'm assuming you're not looking to forget your kids. And isn't that what feeling better feels like?

Anne 34:14
Yeah, and that's funny, because I I have always thought, I mean, since this happened, I don't want to feel better, you know? And it's not even anything that I can really say. I need to make I need to be able to make sense of this. There's, there's nothing to be made sense of. I, you know that that was part of what I kind of thought as I was going through the counseling is, you know what? What is the point? I mean, I just need to be able to put one foot in front of the other. I want to live well. I want to live in such a way that honors their memories, that would honor them, that would make them proud. I. But really, they're, you're absolutely right. It's impossible to for, I think, for to understand this. I mean, you think somebody that this has never happened to, you know, you think, Oh, this is the worst thing imaginable. And it is, you know, I think that sometimes, you know, people will look at me and they'll be like, Oh, you're so strong or so courageous. And I don't have a choice. I mean, I but I think it's I have come to know more parents than I would like to know who have experienced this type of thing. And I think there's just an instant bond that you have with people who have also lost a child or lost children. There's just you relate to them on a just a level that you know people other people are not going to be able to understand. So people can sympathize. Go ahead. Does it feel

Scott Benner 35:58
like you're parenting their memories?

Anne 36:03
That's a great question.

Scott Benner 36:04
You know what I mean? Like? I guess from my perspective, I feel like a really connected parent. I really enjoy having children, and so when they're with me or they're not with me, I'm always in some sort of a fluctuation of helping them or watching them for what they need next, and trying to figure out how to help that or, you know, and no matter what that means, if it's just listening or being there, saying something or actually interjecting, like whatever it ends up being, I feel like that keeps happening. And when Cole went to college. I thought maybe that would happen less, but it doesn't, and I can't imagine I'm gonna feel any differently when he moves out, or that I would feel any differently if he passed away. I can't imagine that I would feel any differently about that. And it just feels like that's what you should be doing, right, like shepherding their their legacy and and still being parents to them. I don't know what else My life is for at this point, it's a very strange thing. I enjoy the things that I enjoy very much, but I don't know how I would feel if you could somehow flip a switch, take me, take me being my kids parents away from me, but leave me the memory of my kids. I'm not sure what I would do with that. So I think that whatever gets your one foot in front of the next one is valuable. I think that you should, 100% live a really long life with as much happiness in it as you can find, and be a terrific parent to Andy and and I'm assuming you and her husband are together. Yes, we are. And be, you know, be in that love and that relationship and all that other stuff. But I mean, I would think that there'd be a way to live well even, but I don't think there'd be a way to live like, forgetting, you know what I mean, like, I I've had a lot of terrible things happen to me that I don't think about anymore, but I don't think this one could be one of them. I'm, by the way, not for nothing, but how much better this am I than your therapist was

Unknown Speaker 38:21
right? I was gonna say you should go into grief counseling or something. Swear to God, I

Scott Benner 38:25
was like, I should at least get 40 bucks for this. I just found myself thinking, and I've, by the way, and found a way to put a laugh in the middle of this episode, which really is a bigger skill.

Anne 38:36
That was, that was, and that was amazing. I'm gonna

Scott Benner 38:39
blow my nose. Now, there you go. Okay, so, so I'm gonna go back to your note for a second. I'm assuming that as the days and the weeks pass and and people feel like they want to help you, I want to ask first, before we get into what actually happened to you, you know, and how community and friends and family got around you. But for anybody in this situation, on the other side of it, what do people say that they think is helpful? That really isn't gotta be a couple sentences and stick in your crawl, right? Sure. Can I guess one everything happens for a reason, is that one of them

Anne 39:27
that would be one, God must have needed them.

Scott Benner 39:32
They're in a better place.

Anne 39:34
They're in a better place. Yeah, yeah, those, yeah, I, you know, and I that's the other thing, is that, you I probably said stupid stuff like that. I don't know other people, yeah, to other people. Before this happened to me, I don't know what I would have said or what came out of my mouth, or, you know, I think you, i. Least

Scott Benner 40:00
it's not cancer. We all say that about diabetes. So, right, right? And what is that? That's people in a moment, uncertain of what to do with really well intended, people trying to very well intended,

Anne 40:13
yeah, and that's what you just have to give grace, because people are they're trying to make you feel better. They're trying to say something as inappropriate as it might be, they don't recognize that, and that's not their intent. And you know, this has taught me to give a lot of grace throughout the last three years, but you know, I truly am appreciative of the way that our friends and our community family have just rallied around us and continue to rally around us, you know. So, yeah, there are definitely some things that you don't want to say too, grieving person.

Scott Benner 40:54
So what is the right thing to do if I were to have met you in the weeks and months after that, what would have the right thing to do have been, do you think, what's the best thing you could imagine, what what happened to you that, at least didn't make you think, Oh, don't say that, because I'm assuming nothing makes you feel better, right?

Anne 41:14
No, right now, no, there's no, nothing could be said to ease any of the pain.

Scott Benner 41:20
So it's a, it's, it's just probably the quiet, right? A hug, like a hand on a shoulder, a glance, like those kinds of things are probably the only thing people should even be and, and who are they doing it for? Are they doing it for themselves, or are they doing it for you? Right? Exactly.

Anne 41:39
You know, it was even hard to have we had so many people around us in the beginning. And I just, you know, at the very beginning, when this happened, I was just in a lot of physical pain. It was sometimes hard to have too many people around just I just, I have my memories are so foggy of those first few weeks. And I think in part because I had a bad concussion, I was on some medication. I think it was making me a little loopy. I just the whole first month was just, I have very little memory of it. Honestly, I do remember a lot of people. We had a lot of meals, we had a lot of visitors, and I I just, I was on autopilot during that time. I think that probably the most helpful thing is I, as I look back on it, the most helpful thing was hearing memories of the boys, hearing what people remembered about them. And we had a number of, you know, cards and letters and that I've saved to this day and will probably never get rid of. I think one of the most meaningful things was Alex, fourth grade teacher sent us a, I don't know, two or three pages of just memories she was she was a first year teacher, the year that she had him, and she had journaled very consistently throughout that first school year, and she sent us Two or three pages of just memories of ALEC. And, you know, I think, more than anything, you know, somebody asked me, What, what's the most helpful? Tell me what you remember about my boys? Yeah, because

Scott Benner 43:32
there's this, like, right now you're, you know, right now, everyone we know is right now, somewhere else living a different life, like, even if it's for an hour or while they're at work or while they're at school, they're having these different interactions. They're making memories with other people. And if you stop and think about it, there's probably an infinite number of those memories out in the world that you're not aware of, and so and so, for people to come tell them to you a story is, is? It sounds wonderful, like, I It's no different than when you haven't seen someone in a while, and you're like, hey, what have you been up to? You're asking, like, you know, what have you been doing? Well, I haven't been in your physical space, you know, exactly, right? I'm interested, you know. And so, so when all those people come in and offer those things, that's the comfort, but not in the beginning, right? Like, we're not looking for a heartfelt Alex story in the first week or something like that. We're looking for people need to realize that this is, if they're going to be involved in your life still, which you hope they would be, that this is a this is a long haul situation. It's not, you know, do you find that people just wanted you to feel better. And like, did you have that feeling, or could you not even feel that from other people?

Anne 44:47
Oh, no. We felt the grief and the shock and the prayers and the love and, I mean, we we felt, yeah, we felt everything, and we continue to feel that, I think sometimes, now that we're so. Removed. I think some people think, Oh, I shouldn't mention it. I'll make her sad. I'll make her cry. And that's really the complete opposite. I want to hear their names spoken. I want to hear what people remember about them. I want to hear the stories. I don't want them to go unmentioned at Christmas dinners and Thanksgiving dinners. And because

Scott Benner 45:21
even if you do cry that those tears come from like it's a happy memory, then, right? You're not thinking, you're not in that moment, thinking they're not here. You're thinking, this is a happy memory. Exactly

Anne 45:31
nobody's making me more sad.

Scott Benner 45:36
Is it fair to say? No one could do that to you. But like, add to your sadness, like it is what it is, right?

Anne 45:43
It is fair to say that yes.

Scott Benner 45:45
So I have a couple of difficult questions. Not that every one of these hasn't been difficult, but I have two difficult questions. I don't know if I'll even before we kind of move on. I want to hear about how how Adam's family at school spoke about him, but it feels to me like I don't I'm not really interested in digging into this, because I don't think it's what we're talking about. But I feel like if I don't bring it up, people listening are going to wonder, but how did this has this or how has this affected your married relationship?

Anne 46:16
Yeah, well, I there's, there's no greater trial that I think a marriage can go through. And that said, you know, my husband has been amazingly supportive. He is the rock, as has always been the rock of our family. We both it's hugely interesting to see how differently we process grief. I am very much always wanting to see pictures and videos, and it's too painful for him to see them. As far as our relationship goes, you know, it's still, I think we, we understand each other in a way that nobody else can it. You know, we're not, we have not been without our have without our trials, but we're, still hanging on. Will have been married for 20 years this March. You know, there are days when wonder how much longer it's going to be, but I

Scott Benner 47:34
will. The reason I asked is because it was happened to me early on, when, when I became a stay at home dad and I had this little baby in front of me, and I just I recognized in my wife's eyes that, you know, like I never really thought of it prior to the baby, right before the baby, like we were these two people who met each other and fell in love. We were like the most important things to each other. And then as soon as the baby came, I realized that I was a guy she met. That was her son. You know what I mean? Like, it's, you know, I'm saying and, and you see that? Like, if it I always felt like, if I really screwed something up, I don't know how she would, you know, forgive me. Now your thing was an accident, obviously, but it still takes a large amount of intellectual maturity to remember that I would think that that's that's just how it occurs to me. I think it's very it's very cool and and, and it makes me feel good that you guys are together and that you're working and that you're realizing that, like, this whole thing is just a, you know, it's another process, and you can't rush through it, just like you can't rush through grief or, you know, you can't, you know, not to be ham fisted about it. But there are people who, sometimes I get notes from all the time. They're like, I just started listening to the podcast last week, and my blood sugars aren't exactly where I want them yet. And I was like, yeah, we've only been out of only been at it for a week, you know, like, it's gonna take more time, like you have to live in it to see where it goes. I would think that that would be, you know, worth doing,

Anne 49:14
I guess. Yeah, yeah. We've people ask us that a lot, actually, because, you know, they I don't know what. You know, how many marriages survive after a tragedy like this? I don't know what the statistics are, but you know they you know people will ask say, hey, you know they don't have much of a chance now.

Scott Benner 49:36
Hey, listen, some of them do, right? You could be those people. We all live like that. Like, you know, it's so funny when, isn't it great when you watch people get married and they're all just like, so happy, and they're young, and I'm like, one and two, one and two, one in every two marriages ends in divorce. Like, yeah, you know, and so, and that's from stuff like, he wants. To watch Netflix, and I want to go dancing. A lesser, a lesser conversation, but, but it would be, it would be, um, it'd be silly to ignore it in this conversation, like you're not unaware of your life, and, you know, I'm not unaware of being married. So I was, I was interested to know, and I wish you a ton of success. I hope it, I hope it goes the right way. You know what I mean? Yeah, of course. So your note, which, with your permission, after you're not with me anymore, after you're off the recording, I'm gonna, if it's okay with you, I'm gonna read your letter. Is that all right? Sure, okay, but I can't do it while you're here, just so you know, and I don't think you'd want me to, and I just it's not, it'll be less ugly if I do it while you're not on the recording. So, but I wanted to get your, I wanted to get your, your Okay, before I did that. So a number of months ago, when this letter came, some people might remember that I sort of very cryptically mentioned that we should try to do hard things, and that came from your letter. So I'd like you to tell me about that a little bit.

Anne 51:10
Yeah, so Adam was in sixth grade when the accident happened, and he had an amazing math teacher that year, their class in November, December, had been studying, I guess, learning how to plot x and y coordinates. And the teacher had given them, I think it was intended to be kind of a fun, light hearted assignment. It was in the month of December, he asked them to plot a cartoon character on a graph with the information that they had learned from this assignment or from the from the lesson. So Adam, there were a number of choices, and the students had to go to the teacher and then get the information to plot based on the cartoon character that they wanted. So Adam was he wanted Mario. He wanted to plot Mario. And the teacher initially was reluctant to give into that. He I don't think he thought that Adam couldn't do it, but he wanted it to be kind of something fun and quick and you know, that wasn't going to be very time consuming. This one involved like quarter points or half points on the grid. So it wasn't just it wasn't a straightforward character. So Adam asked. The teacher initially, said no. He asked again. The teacher said, No. He asked a third time, and the teacher was like, wow, Adam, okay, here do Mario? So? Adam did Mario. A few months after the accident, the teacher had been reflecting on that interaction, what had happened, and he put together. They framed Adam's drawing, or the the final product that Adam had done, the Mario they framed that. They framed the instructions that were very, very detailed, much more detailed compared to the other cartoon characters that the other students had done, and they had everybody sign it. They presented an amazing wall week. It's now hanging on our front and center in our living room wall. It basically says, do hard things. That's the lesson, as the teacher reflected on all of this that, you know, he thought, Adam didn't just settle for a super easy cartoon character. He wanted the hard one. He did the hard one, and he did it well. And the teacher knew, of course, of Adam's challenges, extra challenges with type one diabetes, what that presented. And, you know, he, when he presented this to Arturo and to Andy and I, he basically said, you know, we're learning from Adam. This is going to be his legacy for our class. He didn't shy away from doing hard things, neither with his diabetes, nor with this Mario drawing. He knew what he wanted. He was determined. And the teacher just said, you know, remember that as you go through your high school years, as you go through life, don't back away from doing what's hard.

Scott Benner 54:37
It's rewarding. I'm looking at it while you're talking, and the message is rewarding. And I mean, I to take it a little farther. I feel like you have to, you have to know somewhere in the back of your mind that you know none of your time is guaranteed. Like we all sit around talking about, like, Oh, I'll make it till I'm 80. Or, you know, like, Baba, you know that every. Has that feeling. But the truth is that not everyone does, and you're not going to know who you are in that scenario ever, right? So, whether it's, you know, Adam's years that he got, even at the end, where maybe was just a few months of him feeling better because his blood sugars were were better off, right? Like, maybe that was, that was lovely, you know it, and it would have been terrific if that went on for 100 years, but it was terrific that it went on for as long as it did. And you know, with all of us either living as the parents of children with type one or or people living with type one themselves, I think you have to want for yourself for however many days between one and a and a bazillion that you get, you know you should want better for yourself, and it's not going to be easy, right? Like it's, it's not going to be easy you have, you have an extra challenge every day, and some days, they're a lot worse than others. But I mean, I mean, unless you're not paying attention and told you already one foot in front of the other one, right like you, just every day is not great. Every day is not what you want it to be. Doesn't make it not incredibly valuable. Doesn't make it not beautiful or worth doing or worth living or sharing with someone else, even if it's for your memories or for what you might accomplish today. But you have to honor people like Adam that don't have the chance anymore, right? So do it for them. Yeah, that's just how it occurs to me. It's how it occurred to me when I read your note and I didn't know what you were gonna say, like, I didn't know what I was gonna be able to say to you, I got incredibly nervous about 15 minutes before we were supposed to start talking. And I mean, you I don't, I haven't been nervous doing this podcast once, and you know, I just didn't want to. I didn't want to. I just felt like there's so much here. I wanted to make sure we unpacked it correctly, you know, because at the end of your note the I mean, not that all of it isn't absolutely uplifting and soul crushing to read on the on the other side, like, you know what I mean, like as I'm sitting and reading it, but when you got to the end, and I don't know if you still do this or not, but you still listen to the podcast

Anne 57:16
I do, all right,

Scott Benner 57:19
now I'm going To cry. Hold on a second, god damn it,

Anne 57:24
well and go ahead, you know, well, this, you know, this is very interesting. And you know, obviously, when you know, in the three and a half years that we were working with Adam and helping him to manage his type one diabetes, you know that, I mean, it's, it's undoubtable. It's, of course, hard. It's very, very difficult, you know. And there were a number of sleepless nights I can recall when I would be sitting down right outside his room when we got the pump, and I was playing with the the basal rates and trying to figure out, okay, from two to three o'clock, his sugar is going high, or from, you know, four to five, it's going low, and trying to, trying to make those adjustments and those tweaks to just to make it just perfect. And, you know, it obviously is hard. It's something you wish that was not a part of your life. But strangely enough, you know, I think after everything, i i I grieved the diabetes. I grieved not having that. And I, I, I don't know that we're completely done with it. And I, you know, we've, I've thought about, you know, maybe fostering a child with with type one diabetes. I just, I feel like I have this knowledge. I I have some tools. I obviously not perfect, but I know what to do. And, yeah, and listen,

Scott Benner 59:00
I gotta tell you something. You're killing me, okay, ripping my heart out here. I, I, I'm just gonna for a second, because I don't know another way to couch the conversation. I'm gonna, I'm gonna make it about me for a second, please. The people who think that I do that already, just shut up. We're doing something here. Okay. I thought maybe the podcast would help somebody right like I thought maybe it could. I was hopeful that it would. It started proving itself out that way. It does every day. I never thought it was going to help you with that. You know what? I mean, like, like, it just, I could not have planned for that. It just would have been no way. Do you know, try to imagine, you know, five years ago, me thinking I'm going to try to take my blog and, you know, expand it into a podcast. Because, you know, next year, some person's gonna find it, and then their son's gonna pass away, and then she's still gonna find connection to him through a podcast about diabetes. Like, like, there's no, there's no way to imagine that. And so when I was reading your note, like, that's the part that really, really got me, like, I just was like, This is how are you still listening? And then when you explained it, just now, I'm like, oh, that's how, you know, like, I couldn't, I couldn't quite understand it in the note, but I 100% understand it while you're saying it. Diabetes sucks, but it was a thing you were doing with Adam, right, like you had this connection to him through this thing. It was different than with your other two sons and with anybody else in the world. It's a it's an it's so easy to bemoan it, I guess, and for 1000 good reasons. But you have a different perspective than most of us, and I am, obviously, we don't wish that perspective on someone else, but it's still a viable perspective, and I've the closest I've ever come to it. I think I wrote about it years ago was that as much as I hate sneaking into Arden's room and testing her blood sugar when she's asleep, you know prior to CGM, for sure, I realized one day that I get to hold her hand every day, and I'm watching it get bigger and and older, and it was a very small experience that most people don't have with their kids. And so I tried to find some sort of trade off in, you know, from beauty to annoyance, right? And, and I did, I think it's one of the things I'm really grateful for. I lift her hand up. I know what it feels like, and how heavy it is and and how it's different from the day before. And you have all those connections too. I just, I couldn't imagine that. It's, it's, it's lovely, actually, wow, damn it. Hold on an I'm blowing my nose again. All right, yeah, listen, we're up against an hour. One of us is gonna have a stroke. So um, let's, let's, let's make sure. Let's make sure that, nothing's left unsaid. There's nothing that you really wanted to say, you know, before, before we start saying goodbye,

Anne 1:02:32
yeah, you know I, I just My encouragement. I mean, I, I love meeting people who have connections with type one. My biggest encouragement to everybody in the type one community is, you know, keep doing the hard things and be grateful that you still get to do them. You know, like I said, I don't, I don't know that type one. I don't know that we're completely done with it, and I don't know how, or, you know in what way we might continue to be involved. But I'm just I'm grateful, extremely grateful for the time that we had. I'm really grateful for what I learned through listening to hours and hours and hours of your podcast and how to help Adam live well and in his last few months of life, I would give anything to be able to Go through and have sleepless nights again, every night. I give anything, but I think, you know, Adam was definitely a like his teacher pointed out, you know, he had left a legacy of doing hard things. And I hold on to that, and I continue to go through as a grieving parent, and get up every day and do the hardest thing of going through life without them.

Scott Benner 1:04:11
That is the strongest thing that I've ever heard anyone say or can't imagine. So I think that, I think that's wonderful. I hope everybody heard that, and it leaves them with a meaningful feeling that they don't escape. And you know, if you want to see, you know the impact that how diabetes is always around while you're saying this beautiful thing. Arden sex team, hey, it's lunchtime. Oh, she's like, and I'm listening to you and and she's like, I'm not that hungry, so what should we do? And I was like, just like, I think maybe we should do this and this. And she's like, Okay. And then she and then I asked you to have some juice earlier, and she didn't. And so. Her blood sugar hasn't gone up the way I wanted it to, but it hasn't gone down. So she's admonishing me in the text messages while you were saying these beautiful things. She says, she says, I never had the juice, by the way, I knew I didn't need it. You should listen to me more often. And I'm gonna tell you, by the way, she did need the juice. What she just means is her blood sugar didn't get any lower than it was. And so now she's just look at her. She just, she won't stop, like I'm about to text her, just go eat and leave me alone.

Anne 1:05:38
Oh my goodness, yes, this is remind me quite a bit of my text exchanges with Adam.

Scott Benner 1:05:45
I got one from her this morning. I'm just like, like, Arden set this. You know, I'm trying to get her to set, like, a decrease in her basal, and she's just doesn't answer me for 20 minutes. Then finally I get the what back, just what. And I was like, if I didn't need to say it to her so badly. I would just say, What do you mean? What? Like, I'm always like, just scroll up a little bit. Like, couldn't you just scroll and go, Oh, look, he just said it right before I said, What? She won't do it. She makes me say it again. I think it's my punishment. Somehow. I want you to, if you see fit. First of all, please accept my my love and admiration and my good wishes and share them with Artur and Andy if you feel like that's appropriate, and don't if you don't, but I just really, I can't imagine that you said yes to this I and I want to want you to know why I asked it was because I thought maybe it would be helpful for you to just be able to tell other people about Adam, and you're going to tell a lot of people this way. So it just, it just, I thought you'll say, I think I even said my email, like, please say no, if you don't want to do this, don't feel any pressure to do it any time frame. It could be years from now, like whenever you want or don't want, and I you weren't going to do it at first, but can you tell me, as we're kind of saying goodbye, what changed your mind?

Anne 1:07:07
You know, I just thought, what a way to honor Adam. And I think, you know, any parent who has lost a child will jump at the chance to honor their child's legacy, to talk about their memories, to hear their names. And I, you know, I, I guess I came into this phone call not really knowing,

you know how it would go, or what could be said, or you know what of value that, that I would have, but, you know, I, and I don't know that there has been too much value, but I, you know, I guess I keep going back to what I wouldn't give to go through the hard times all over again, of

Scott Benner 1:07:58
I believe there is value in it, and and I, we're gonna find out very quickly, because I'm just putting this out. I can't stare at this in my folder. It'll just, I can't, I'm not going to so I just, I'm gonna, it's going out right away so that I can, I can, sort of, you know, just let it move on to somebody else and see what, you know, what they can take from it? I mean, I would, I would bet that, that there's a lot of good that comes from you sharing this in not just for you, and any cathartic feeling you might have experienced over the hour, but, um, but for people who are going to hear it, I just, I think the message is there, like, right? Like, what wouldn't you do to to have those experiences? Still, even though five minutes earlier, they weren't the best experiences of your life, you described the day you was diagnosed as the worst day of your life, right up until something else proved out to be more impactful on you. So yeah, that's really something else. Okay, you're good. You want to tell a story? Or I'm not trying to make you say anything. I just want to make sure you're good, right? How? Yes, I am. All right. Excellent. I genuinely appreciate you doing this. Thank you very, very much. Sure.

Anne 1:09:14
Thanks, Scott. You

Scott Benner 1:09:25
a huge thank you to one of today's sponsors, gevok glucagon. Find out more about G VOK hypo pen at gevok glucagon.com, forward slash, juicebox. You spell that, G, V, O, k, e, g, l, U, C, A, G, o, n.com, forward slash juicebox. Jalen is an incredible example of what so many experience living with diabetes. You show up for yourself and others every day, never letting diabetes define you, and that is what the Medtronic champion community is the. About each of us is strong, and together, we're even stronger. To hear more stories from the Medtronic champion community, or to share your own story, visit Medtronic diabetes.com/juicebox and look out online for the hashtag Medtronic champion. This episode of The juicebox podcast was sponsored by us med usmed.com/juice box, or call, 888-721-1514, get started today with us. Med, links in the show notes. Links at juicebox. Podcast, com,

hey, thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of The juicebox podcast.