#303 Do Hard Things
Scott Benner
For Adam and Alec
Anne speaks to Scott about her sons Adam and Alec, living with tragedy, type 1 diabetes and so much more.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello, everyone, welcome to Episode 303 of the Juicebox Podcast. Today's episode is titled do hard things. And it's with an you're gonna get to know and in a second. Today's episode is a little, a 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 you don't listen with your kids, maybe you want to, you should probably make that decision.
I don't even know how to talk about this. So let me do this. There's not going to be ads the way you think about it in this episode, I just can't i can't bring myself to put them in. But I do need to mention the sponsor. So this episode of The Juicebox Podcast is sponsored by Omni pod makers of the only tubeless insulin pump in the world. It is the insulin pump that my daughter has been using since she was four years old. And she is 15. It is wonderful. And on the pod would be thrilled to send you a free no obligation demo of the Omni pod right now, all you have to do is go to my Omni pod.com forward slash juice box and get that going, they'll ship it right to your house, you can try it on and wear it and see what you think. The show is also sponsored by the dexcom g six continuous glucose monitor Arden has been wearing the dexcom forever and ever. And we use the data that comes back from Dexcom for so many things. Just a few of them are insulin dosing, understanding when to eat how to eat seeing the speed and direction of your blood sugar. Knowing if you're falling it has predictive low alerts, it'll tell you that in the future, I expect your blood sugar to be under 55. It also has a share feature. So that the people who love you can see your blood sugar when you're not with them. So whether that's your child, or your sister, or somebody else that you care about, the user can share their data with up to 10 people. It's amazing. podcast is also sponsored by the Contour Next One blood glucose meter, this is ardens glucose meter, which is absolutely spectacular top of the world for accuracy. very portable without being too small. test strips allow you to take a second shot just in case you you know you go in for blood and don't quite get it the first time without ruining the test strips, you save money there. And there's a wonderful app you can get for your Android or iPhone, that pairs to the meter with Bluetooth to give you even more information to help you make good decisions. You can take a look at that at Contour Next one.com. And of course the podcast is sponsored by touched by type one. I'll tell you more about all the sponsors next week. But for now, check them out at touched by type one.org. It's dancing for diabetes, they changed their name, and you really should go check them out. I want to take one brief second to thank the good people who sponsor this podcast. Because without them, you wouldn't get stories like this.
Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. And to always consult a physician before becoming bold with insulin or making any changes to your health care plan.
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, hoping No.
Unknown Speaker 3:47
Well, if I can get through it without crying.
Scott Benner 3:49
Hundred percent think we're both crying. But so just so 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 how amazed I am that you are doing this. I usually start the shows by having people just introduce themselves.
Anne 4:07
Okay, my name is Anne.
Scott Benner 4:11
Okay, 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 and like, Oh, I get a note, I look at it, I start reading it. I'm like, Oh, this is a nice note. It's gonna 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.
Unknown Speaker 4:59
You're mad
Unknown Speaker 5:01
I am okay.
Scott Benner 5:03
You have children,
Anne 5:05
three amazing boys, the youngest of which was diagnosed with Type One Diabetes in 2013.
Scott Benner 5:13
And that's Adam. Adam. Yes. So Adam was diagnosed in 2013. How old was he then?
Anne 5:19
He was eight years old.
Scott Benner 5:21
Okay. So why don't we just talk about his diagnosis? How did it go?
Anne 5:28
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 that were signs that in hindsight, we thought, Hmm, I 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 prayed that we have the run was kind of a kickoff 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 one 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 up.
Scott Benner 6:24
So then your other two sons?
Anne 6:26
Oh, yes. Well, the others two 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 a did a urine test to detected sugar in the urine, and at that very moment diagnosed him with Type One Diabetes.
Scott Benner 7:16
Prior to that, how long do you think you were seeing symptoms?
Anne 7:20
Well, it's really funny, because so at 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 brother's kicked 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 at Adam having that year, some unexplained stomach pain. And I don't know whether that was related to the 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 and we took him to the ER at one point with constipation. And I don't know whether that was a sign or whether that was, I
Scott Benner 8:57
don't know, hard to look back and figure it out as it.
Anne 8:59
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, when we kind of realized that probably was happening for a while longer. Wow,
Scott Benner 9:09
that's a that's crazy. So how did the the first couple of you know days and weeks go every year diagnosed? How did you find the transition?
Anne 9:21
Ah, 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 have transitioned him into doing this on his own. 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 he did what he needed to do. And so, you know, that that, obviously, it was a time of shock, I guess, to a little bit, but we transitioned fairly, fairly well, as far as you know, getting him to do the basics on his own.
Scott Benner 10:55
It's 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, make 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 a nurse was able to just say, look, you know, you're probably gonna have to do this. So let's do it.
Anne 11:21
Yeah, yeah. Yeah, we greatly appreciate it that support right? Did you
Unknown Speaker 11:25
guys have
Scott Benner 11:28
Did you transition to a pump at any point, or glucose monitoring or anything like that.
Anne 11:34
Um, the glucose monitor and pump actually did not happen until after I started listening to your podcast in 2016. We had ordered a dex calm in following the highest agency 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 providers 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 gone into where they told us the Adams agency, December of 2015, ish was, I think, 9.5. And I remember feeling shocked when I heard that
Scott Benner 12:33
was that a jump up had been lower, and it jumped on you.
Anne 12:36
It had 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 ever been. And it was kind of an afterthought. It wasn't even the provider herself. It was a one of the the nurse 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, We 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 gonna be something that actually sticks up, I'm 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. I 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 that roads. I waited until I could get an appointment at 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 14:01
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, get out. I'm interested. I'm interested in through this 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 eight 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 the What we could try to do blah, blah, blah to move forward? Like, wonder why that part never comes, you know?
Anne 15:06
Yeah, the parts that always seem to come up in the visits with Aaron p would be, you know, meeting with her looking back, okay, six weeks ago from today at 415. Why do you think we have this spike? And I, you know, I just
Unknown Speaker 15:22
I don't know.
Anne 15:24
Yeah, um, yeah, I
Scott Benner 15:27
think it's 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.
Unknown Speaker 15:35
Right. Right.
Scott Benner 15:36
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 give? I'm assuming that gives you kind of the courage to put the Dexcom on him. Can you tell me a little bit about that?
Anne 15:56
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 I was fine. 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 just as 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.
Take a class and help get that set up.
Unknown Speaker 16:49
We
Anne 16:52
Yeah, I mean, we got it set up. I got him set up with the Dexcom
continued to listen to your podcast.
I guess. Sorry. I'm getting teary already thinking about
Scott Benner 17:06
I'm, 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 at once. He was like up in the nines there. And you got some you listen to podcasts for a while you started getting as a one t 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?
Unknown Speaker 17:43
so
Anne 17:45
late April of 2016, we got him set up with the decks calm. And for the next several months, we had the most success that we had ever had. Since the time of its 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 sugar's would tend to go up too, 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 omni pod 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 into appointment on December 19th, 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 is 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 Adams 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 Dave, the cousins are very close. I relented, I let Adam or Alec come with us as well. So I had Alec and Adam in the car with me. We were in route to his endo appointment. I was very excited. I knew that his a Wednesday 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 Omni pod, we are 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 20:36
Sorry. Um, how long? Was it between the accident when you woke up?
Anne 20:44
And 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 mark with me
Scott Benner 21:19
anymore. What were your injuries, like?
Anne 21:28
The I had fractures basically from head to toe, but they were all able to heal on their own, they didn't have to have surgery or anything like that I had a brain bleed, and
just very sore.
I was in the hospital for about a week, a little over a week. But everything, you know, everything healed up. And 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,
Scott Benner 22:04
I? 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? 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 and it will keep going. I guess it's been it's been over three years now. Is that right?
Anne 23:01
Yes. It was three years this past December?
Scott Benner 23:04
Does it has it so far lessened in? In in? I'm assuming how painful it is? Does that get better?
Anne 23:16
Um, do you know grief, I think is just a very interesting thing.
Unknown Speaker 23:23
Um,
Anne 23:25
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 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 going on for the rest of my life. Where you just, you're overcome, you're overcome. How could this happen?
Scott Benner 25:06
You 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 it's 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 25:56
Yes, Andy, was not in the car at the time. And I think the only reason that he didn't come today 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,
Scott Benner 26:16
with you tied to his belt, I'm assuming
Unknown Speaker 26:19
a three foot rope, right?
Unknown Speaker 26:22
That lady behind you, Andy? Oh, it's my mom. And
Scott Benner 26:26
she'll be in class today. Yeah, how? I guess, you know, how did it impact him?
Anne 26:37
Andy is the most even keeled child, I think that exists. He obviously it, you know, going from a crazy, fun house full of energy to being the only one. It difficult, difficult for him, obviously. But he is the one that I feel like it's a strength, in a way it 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 really 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 28:25
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. But that's got to be has to weigh on you as well. Does it not?
Anne 28:59
Yeah, yeah, absolutely does.
Scott Benner 29:03
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. That's a question that plagues me has plagued me every day for the last three plus years. It's just random. Do you seek 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?
Unknown Speaker 29:32
Yeah, I
Anne 29:36
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 29:56
Can I ask you, before you tell me about your journal. 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 paws, like, what am I talk to a therapist about? You know, you know, because I find myself in the same situation right now, 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. I don't know if you've ever heard the episode with a woman named Linda hopper 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 31:44
Yeah, and that's funny, because I, I've always thought, I mean, since this happened, I don't want to feel better. You know, 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 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 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. But really there? You're absolutely right. It's possible to for I think, to understand this, I mean, you 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 I think that sometimes, you know, people will look at me, and they'll be like, Oh, you're so strong are 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. Other people can sympathize.
Scott Benner 33:27
Go ahead. Does it feel like you're parenting their memories?
Anne 33:33
That's a great question.
Scott Benner 33:35
You know, you mean, like, I guess, from my perspective, I feel like I'm 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 going to 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, get 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 as you can find. And be a terrific parent to Andy and, and I'm assuming your husband's together.
Unknown Speaker 35:23
Yeah, and
Scott Benner 35:24
and be, you know, be in that love in 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 then your therapist was right.
Unknown Speaker 35:52
I was gonna say you should go into grief counseling or something.
Scott Benner 35:55
Like, I should at least get 40 bucks for this. I just found myself thinking. And I, by the way, and found a way to put a laugh in the middle of this episode, which really is a bigger skill.
Unknown Speaker 36:06
That was that was
Unknown Speaker 36:08
that was amazing. I'm gonna blow my nose now. There you go.
Scott Benner 36:13
Holy Christ. Um, okay, so. So I'm going to go back to your note for a second. I'm assuming that as the days and the weeks passed, 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 the situation on the other side of it, what do people say that they think is helpful? That really isn't? That'd be a couple sentences and stick in your craw. Right? Sure. So I guess everything happens for a reason. Is that one of them?
Unknown Speaker 36:58
That would be one.
Unknown Speaker 37:00
God must have needed them.
Scott Benner 37:02
They're in a better place.
Anne 37:04
They're in a better place. Yeah, 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. 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? Um, you know, I think you
Scott Benner 37:29
at least 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
Anne 37:42
well intended. Yeah, and that's what you just have to give grace. Because people are there, they're trying to make you feel better. They're trying to say something is inappropriate as it might be, they don't
recognize that and that's not their intent. And,
you know, this is taught me to give a lot of grace throughout the last three years, but, you know, I, 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 to
a grieving person.
Scott Benner 38:24
So what is the right thing to do? If I were to have met you in the weeks and months after that, what what is the right thing? To do have been do you think? It What? 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? Now, right
Anne 38:45
now, there's no nothing could be said to ease any of the pain.
Scott Benner 38:50
So it's a it's it's just probably the quiet right? A hug, like a my hand on the shoulder like 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?
Anne 39:06
Exactly.
Um, 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. But during that time, I think that probably the most helpful thing as 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 we'll 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 I, you know, I think more than anything, you know, somebody asked me what, what, what's the most helpful? Tell me what you remember about my boys?
Scott Benner 41:01
Yeah. Because 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 either at work, or Walter 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, 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? While I haven't been in your physical space? You know, 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 the people need to realize that this is if they're going to be involved in your life still, which you hoped they would be. 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 42:17
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 far 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
Scott Benner 42:50
birthdays and 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.
Anne 43:02
Exactly. There nobody's making me more sad.
Scott Benner 43:06
Is it fair to say no one could do that to like, add to your sadness, like it is what it is right?
Anne 43:13
It is fair to say that yes. So I
Scott Benner 43:16
have a couple of difficult questions before not that every one of these hasn't been a 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 Adams 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 marriage relationship?
Unknown Speaker 43:46
Yeah. Um
Anne 43:51
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 is has always been the rock of our family. We both it's 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 art of without our trials. But we're, we're still hanging on will
have been married for 20 years this March.
You know, there are days when
I wonder how much longer it's going to be. But
Scott Benner 45:04
I 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 a, 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 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 the podcast last week. And my blood sugar's aren't exactly where I want them. Yeah. And I was like, yeah, we've 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.
Unknown Speaker 46:44
I guess.
Anne 46:45
Yeah, yeah. We've found people ask us that a lot, actually. Because, you know, they. I, I don't know what, we 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. Thanks. Yeah.
Scott Benner 47:07
Hey, listen, some of them do. Right? You could be those people. I, 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 into one into one. 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. Yeah. Oh, that's a lesser a lesser conversation. But but it would be it would be, it'd be silly to ignore it. And 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 going to read your letter. Is that all right?
Unknown Speaker 48:07
Sure.
Scott Benner 48:08
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 48:40
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, he 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 that 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 get 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 as easy 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 at the other students had done. And they had everybody sign it.
They presented
an amazing
while we it's now hanging on our front and center in our living room wall. It basically says do hard things. That's the the lesson is the teacher reflected on all of this that, you know, he saw 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 Adams challenges extra challenges with Type One Diabetes. What that presented and, you know, he, when he presented this to Arturo, and Andy and I, he basically said, you know, we're learning from Adams is going to be his legacy for our class. He didn't shy away from doing hard things, either with his diabetes and or 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 52:07
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 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, Baba, you know, that everyone 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, atoms years that he got, even at the end, where it maybe was just a few months of him feeling better, because his blood sugar's were, we're 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 have an extra challenge every day. And yeah, some days, they're a lot worse than others. But I mean, I mean, unless you're not paying attention and pulled 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, they don't have the chance anymore, right? So do it for them.
Unknown Speaker 53:59
Yeah,
Scott Benner 54:00
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, though, I mean not that all of it isn't absolutely uplifting and soul crushing to read on the on the other side like you don't mean like as I'm sitting and reading it, but when you got to the end, I don't know if you still do this or not. But you still listen to the podcast.
Anne 54:47
I do.
Unknown Speaker 54:49
Alright, right now I'm gonna hold on a second god dammit.
Unknown Speaker 54:54
I just well and you know,
Anne 54:56
it will this you know, this is very interesting and you know 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 adaptable it 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 in 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 grieved the diabetes, I grieved, not having that.
Unknown Speaker 56:00
And
Anne 56:03
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
Scott Benner 56:30
listen, I gotta tell you something. You're killing me. Okay. Aye. Aye. Aye. I'm just gonna for a second, because I don't know one other way to couch the conversation. I'm gonna, I'm gonna make it about me for a second, please. People who think that I do that already. Just shut up. We're doing something here. Okay. Um, I thought maybe the podcasts 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, 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. Well, while you're saying it. Diabetes sucks. But it was the thing you were doing with Adam, right? Like you had this connection to him through this thing that 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 mean, 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 I don't know 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 to I just couldn't imagine that. It's, it's, it's lovely, actually. Well, no, dammit, hold on, and I'm rolling my nose again. All right, yeah, Muslim, we're up against an hour one of us is gonna have a stroke. So let's, but let's make sure. Let's make sure that um, nothing's left unsaid. There's nothing that you really wanted to say. You know, before before we start saying goodbye Right.
Anne 1:00:02
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, the we're completely done with it. And I don't know how we're, you know, in what way we might continue to be involved. But I'm just 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 this he 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 is going through life without them.
Scott Benner 1:01:41
Oh, is the strongest thing I've ever heard anyone say we can 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's texted me. 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, 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 monitoring 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.
Unknown Speaker 1:02:51
And I'm going to tell you by the way, she didn't need the juice.
Scott Benner 1:02:55
But she just means is her blood sugar didn't get any lower than it was and so now she's just looking at her. She's just she won't stop like I'm about the texture just go eat Leave me alone.
Unknown Speaker 1:03:08
Oh my goodness. Yes. This remind me quite a bit of my text exchanges with Adam.
Scott Benner 1:03:15
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 bazel and she's just doesn't answer me for 20 minutes then finally I get the what back just what? And, 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 say what she makes me say it again. I think it's my punishment somehow. Oh, I want you to if you see fit, first of all, please accept my my love and admiration and and my good wishes and share them with Arturo. And 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 wouldn't 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 gonna 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 in any timeframe. It could be years from now, like whenever you want or don't. And 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 1:04:38
You know, I just thought what a way to honor Adam. And I think you know, any parent who has lost a child will we'll 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 I came into this phone call not really knowing what was gonna be said, Yeah, how it would go or what could be said, or you know what 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 1:05:29
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 describe the day he was diagnosis, the worst day of your life, right up until, you know, something else proved out to be more impactful on you. So yeah, that's really something else. Okay. And you're good. You want to tell a story, or I'm not trying to make you want to make sure you're good, right? How Yes, yeah. All right. Excellent. Um, I genuinely appreciate you doing this. Thank you very, very much,
Unknown Speaker 1:06:44
Stuart. Thanks, Scott. No, thank you.
Scott Benner 1:06:48
Okay, I just hung up with and I want to thank him for coming on the podcast and sharing her story. And of course, her memories of Adam and Alec and how her family has been impacted by it's hard to know what to say right? tragedy feels small, like not even like that's not enough. All right, ready? I'm going to going to read you the email that brought you this episode. All right, hold on. It's dated August 9 2019. It says hi, Scott. This is just the thank you email from a deeply grateful mom. No response is needed or expected. I started listening to your podcast in early 2016. My youngest son Adam was diagnosed with Type One Diabetes in 2013 at the age of eight. On the first day of Christmas break, in December of 2016. We had an endo appointment 30 miles away from my home. My middle son Alec 13 years old, had asked the night before to come with us and route the atoms into appointment that morning. Our color, our car lost control on an icy highway and neither of the boys made it. I miss them every single day. And I would give anything to be able to go back to sleepless nights Dexcom alarms, pod insertions, playing with temp basals toting juice boxes everywhere. And being a student of how to make the arrows stay straight. Listening to so many hours of your thoughts on type one management gave me a new surge of energy and hope for successfully managing type one with Adam. As I know you hear from so many. Putting your strategies into practice led to a two point drop in is a one see from my pre podcast days to his September into appointment. I remember feeling so excited to have as a one c rechecked again in December, I'm certain it would have been even lower. While we didn't get to do that, I'm so grateful for all I learned by listening to you being bold with insulin, manipulating basals. Finally figuring out that Adam's glucose would skyrocket due to adrenaline surges when he played club soccer and learning to make the right adjustments during those times. Your message fueled me with a new level of intentionally and determined
Unknown Speaker 1:09:20
Excuse me.
Scott Benner 1:09:23
Your message fueled me with a new level of intentionality and determination that helped me help Adam manage in the best possible way during his short time on Earth. Adams sixth grade class recognize that he left them with a legacy to do hard things. In every single podcast you offer hope and inspiration for people to be able to do hard things and to do them well. Thank you from the bottom of my heart for utilizing your gift of conversation to share such valuable and battle tested insights. I still listen because it helps me feel close to Adam
Unknown Speaker 1:10:03
and Adam Smith
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