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Episode 67- A T1D Dad's Perspective on Sharing The Load
204 Plays1 month ago
Welcome Ethan! Ethan is a dad of a type 1 diabetic 10 year old and has so many amazing things to offer. In this episode, Amanda and Raquel ask Ethan to share his experience of dealing with the emotional aspects of a diabetes diagnosis and how he showed up for his family. He discusses how easy it is to "let" your partner take over all things diabetes and what can be done to break that cycle, plus so much more! Join us for this incredibly insightful episode.
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Transcript
Intro
Introduction of Ethan and Family's Story
00:00:23
amanda
Okay everyone, we are, I mean, we've got like the coolest guest ever today because we have another T1D dad, although your handle is not T1D.dad. So we've got Ethan here. He has made a couple of videos for us over on Instagram. You guys are really resonating with him and his content. um So Ethan, welcome to the show. How are you?
00:00:50
Ethan Ax
Thank you very much. I'm glad to be here.
00:00:52
amanda
We are so excited to have you. Um, let's like just dive right into the story because you're so easy to talk to and you have amazing things to say. So can you first of all, just start with like a little intro about yourself, your family, your child who lives with diabetes and whatever else you're comfortable sharing in terms of like your, your entrance into the world with diabetes.
00:01:17
Ethan Ax
Oh, wow. That's always such a big question, right?
00:01:20
amanda
Yeah.
00:01:20
Ethan Ax
ah So my wife and I, we live in central Illinois, kind of in a more rural community. um My wife works in pharmaceutical sales for veterinarians.
00:01:30
Ethan Ax
So she has like this little bit of healthcare background that is super helpful, I have found in terms of managing our daughter's diabetes. And that'll kind of come into the picture more later.
00:01:41
Ethan Ax
I work in training and development for an agriculture company here, and that's just kind of us.
00:01:43
amandacberg
Thank you.
00:01:48
Ethan Ax
and Then our daughter, she was diagnosed with type 1 diabetes not quite a year ago. ah She was actually diagnosed on World Diabetes Day, November 14.
00:02:01
Ethan Ax
How crazy is that?
00:02:02
amandacberg
Whoa.
00:02:04
Ethan Ax
We didn't even realize it.
00:02:05
amandacberg
I have another friend diagnosed that day. That's crazy. So crazy.
00:02:08
amanda
is crazy.
00:02:09
Ethan Ax
Wow, that's incredible. um But it just like, I don't know, it just makes the story all the more rich, I think. But um so she it she was nine when she was diagnosed, she's 10 now. And as I've been really just learning more about the diabetes community and listening to parents who are going through this. um I just have all sorts of feelings about the fact that she was a little bit older than people that have younger kids that were diagnosed.
Recognizing and Reacting to Diabetes Symptoms
00:02:36
Ethan Ax
And I feel like that has just changed our experience with it. And so, you know, that's super interesting. But ah so she was nine when she was diagnosed.
00:02:45
Ethan Ax
And she was showing a lot of the signs that, in retrospect now, I see that people experience you know the frequent urination, just constantly thirsty.
00:02:56
Ethan Ax
and And honestly, all of that was lost on me. I was like, I don't know. She's our first and only child. I was like, maybe this is a growth spurt. you know I have no idea what this what's going on.
00:03:07
amanda
Yeah.
00:03:09
Ethan Ax
I really didn't think much about it. ah My wife, who works again with veterinarians and is familiar with like the signs of diabetes in pets.
00:03:20
Ethan Ax
And it was like the same symptoms.
00:03:20
amanda
Mm hmm.
00:03:22
Ethan Ax
And so she's like, I think she's got diabetes. I'm like, oh, you're worried. You're worried too much about it. And she's like, I think we need to get into the doctor like right now. And I'm like, and I was I was not even going to go.
00:03:34
Ethan Ax
I'm like, all right, I will go because you know it's clearly important to you. You think that this is serious. It's probably nothing. um in And so we go into the doctor's office and you know they run the the test, the blood sugar test or whatever, and the doctor comes back in. It's like not even five minutes. It's like three minutes or you know whatever. And she's like, okay,
00:03:59
Ethan Ax
So ah you know it was off the charts. Your daughter has type 1 diabetes. And I'm like hit by a truck. like I can't even believe what I'm hearing because I was just going into it with the perspective like, this is nothing. This is just natural part of the growth process, something.
00:04:16
Ethan Ax
that the the pediatrician would tell us and I think it was so jarring for me because I feel like with most diagnoses they tell you like okay we gotta run more tests to make sure that we're sure that that's what this is and we're gonna send you to a specialist and they're gonna see what they can do and there was like none of that it was like three minutes later your life has changed forever you're really just gonna have to learn to live with it
00:04:16
amanda
Yep.
Living with a Diagnosis: Adaptation and Challenges
00:04:41
Ethan Ax
And so I think that that that sense of having no agency or control over your situation and you know there's no amount of like, all right, what are my options? There are no options. Your options are learn to live with it.
00:04:58
Ethan Ax
Right? um and And so that was tough. So I think i I peppered the pediatrician with like a dozen questions right off the bat because I'm like, I got to get my head around this.
00:05:09
Ethan Ax
She even stopped and she's like, dad, are are you doing OK? Because my wife, who had been preparing for this moment because she recognized all the symptoms, like she was like, all right, we're there.
00:05:12
amanda
Yeah.
00:05:20
Ethan Ax
Like this is I saw this coming. And I was just like not prepared for that. So we rushed to the Children's Hospital and of course her her numbers are in like the 400s, 500s, whatever. um you know They they you know put her on all the equipment and get her on insulin to try to to get her blood sugar down. And we're there for a few days. um And through that time, it's just seeing everybody, like you know the social worker and the and the the various nurses and all the dietitians that try to help you through that. um And so through it all, our daughter's been amazing. She's been fantastic. And it's just been a wild ride ever since, but it's also been, I think, a really
00:06:06
Ethan Ax
ro boarding right um I've just developed such ah an immense pride for our daughter and how she's handled this and and how we've come together as a family to tackle it.
00:06:19
amandacberg
Wow.
00:06:19
amanda
Well, shit.
00:06:22
amanda
so I'm just like, as you're talking through this, I'm like, oh, oh, that opened up an old wind. Oh my gosh, yes. Like everything you are saying is so right. It's interesting. Do you find this even in YouTube, Raquel, like where if somebody says something just a little differently than how you would phrase it or explain your situation, it hits you in a whole new way.
00:06:48
amanda
and you're suddenly like, oh my gosh, I've been feeling that way for however long and I didn't even know it because I would never express it in that way.
00:06:48
amandacberg
Yeah.
00:06:56
amanda
So even you explaining the whole like immediate onslaught of there are no options, there is no other potential things.
00:07:07
amanda
So there's no space in time for you to like potentially
00:07:15
amanda
just wrap your head around something around this or something else, you know, and it's just like this immediate dive right into this diagnosis that changes your life forever. And that that's one of the hardest parts. And I think something that contributes immensely to like the intense grief that we all end up feeling.
00:07:40
Ethan Ax
Yeah, I think you know a lot of my questions involved right after the diagnosis, ah what's the worst possible scenario? I don't know. Somehow the logic in my head was like, if I can prepare myself for the worst possible scenario here, then I can handle anything.
00:07:57
Ethan Ax
and so i I think at one point, I even peppered one of the nurses at the hospital with the questions about, like all right, like what if there's like a zombie apocalypse? if We can't get insulin anymore. like like What can I do to manage the diabetes? that She like had to think about it. I don't think anybody had ever asked that question before. and She's like, well, I guess you would just eat proteins and maybe try to avoid carbs as much as possible. Then I'm like,
00:08:27
Ethan Ax
OK, all right, I'm ready for zombie apocalypse. I've got it. Right. And of course, that would never happen. But I just I remember for it was helpful to me to frame things up in extremes. And at that time when I didn't know anything, like what's the worst that could happen if she goes low or what's the worst that can happen if she goes high or if we get the insulin dose off? Because, you know, in that moment, they're always like, OK, here's the equation.
00:08:55
Ethan Ax
You take the number of cards and you subtract this and you divide it by this and here's how you get the insulin and and and then you they want you to start with the finger pricks and you know giving the injections before they put you on. At least you know this Diabetes Resource Center did before they put you on the pumps and that sort of thing.
00:09:13
Ethan Ax
and And so you had to learn how to do all of that manually. And of course, at that moment, it was like, all right, what's the worst that can happen if I screw up this equation by, you know, half a percentage point or whatever. and And then so just kind of understanding like, what are my what are my guidelines that I need to operate within? And what is it that I have to be super concerned about versus like, okay, that's no big deal, we can manage through that.
00:09:41
amandacberg
Yeah.
00:09:41
amanda
Yeah, that's a yeah that's that's an interesting approach. um And I think that will resonate with a lot of people, like the immediate worst case scenario. So did you does that mean that you like understood what type 1 diabetes meant from the get-go if you were already asking these worst case scenario questions?
00:10:02
Ethan Ax
Ooh, I think understood as a strong word. I mean, you know, I think we were just trying to be a sponge and absorb as much information as quickly as possible.
00:10:12
Ethan Ax
And so with each answer that you get, that just leads to another question. And so, and and still to this day, I mean, almost a year later, we're asking questions and, you know, you've been living with type 1 diabetes for a long time and you're asking questions, right?
00:10:17
amanda
Yeah.
00:10:29
Ethan Ax
You're just, you never stop. And um I think that, um We were just able to very quickly get a sense of, yeah again, just broad strokes of what it means to have a child with type 1 diabetes and just this feeling, this immense pressure to get it right.
00:10:52
Ethan Ax
in this really tight timeframe before you leave the children's hospital. I think that was the biggest thing, like, okay, right now we're surrounded by resources, and in 48 hours, we won't be, and then it's going to be all on us to keep our child alive, which seemed like a wild concept. Right now, I've got an endocrinologist, multiple nurses, ah you know a dietician, a social worker, all keeping my daughter alive and now is just going to be you two yahoos.
00:11:22
amanda
Hmm. Hmm.
00:11:25
Ethan Ax
We're going to send you home. We'll give you a book. and We'll give you a phone number to call, but you'll be able to manage, right?
00:11:28
amandacberg
ah
00:11:31
Ethan Ax
And it's like, well, no, that's not sufficient. Like that doesn't feel sufficient. So it sort of compels you to find a way.
00:11:39
amandacberg
and
00:11:39
amanda
Yeah, that's true. It's definitely like having a newborn all over again. here's Here's this fresh baby. You'll be okay.
00:11:49
amanda
It's like, okay, I know I'll be okay because the human race still exists, but like, oh are you sure? No one's testing me. No one's coming to check. I didn't like, I didn't pass a test.
00:11:58
Ethan Ax
Yeah.
00:12:00
amandacberg
Mm
00:12:01
Ethan Ax
Right, right.
00:12:01
amanda
um
00:12:02
Ethan Ax
It is sort of like a rebirth, right? Yeah.
00:12:04
amandacberg
hmm.
00:12:04
Ethan Ax
Yeah.
00:12:04
amanda
Yeah. ah but's So to me, as you're explaining all of this, I feel like your education was pretty high quality in the hospital. And the reason why I say that is maybe I was just like in ah the postpartum haze way too much. Maybe I had one hour of sleep and had just held down my two-year-old every 30 minutes for more pokes than I remember.
00:12:34
amanda
And like I couldn't actually process what was being said, but what I do remember is one, no one talked about a Dexcom or continuous monitoring to begin with. And so I literally just remember them being like,
00:12:48
amanda
you poke her finger and measure the blood right before she eats. If it is high, you give a little extra insulin and this random amount of insulin, and then she has to eat anywhere between 45 and 60 carbs or 30 and 45 carbs depending on the time of day. It was very like very old school, very strict, very regimented, and no one ever explained like why she might be high and if she is super high what that means for her and they when they said like basically they avoided lows in the hospital so I never got to see a low in the hospital that then required a treatment.
00:13:31
amanda
And so when they sent us home, it was sort of like, if she goes under 70, that is Mayday, Mayday, it's not okay. She needs 15 grams of carbs, recheck 15 minutes later and give another 15, she's still under 70. And that was just it, you know? And so like even with my nursing background and a very, very minute general understanding of type one, there was still this sudden revelation of like,
00:13:59
amanda
One, this is forever. That's crazy. Two, Insulin is actually required for every single thing that goes in her mouth. And three, she's stuck eating this super regimented like diet at specific times and being force fed and being force poked. And it was just like, I don't know. I didn't even have the ability to ask more specific questions because it just felt so foreign. So it kind of seems like maybe our education was super different. I'm hoping.
00:14:31
Ethan Ax
Yeah, the hospital staff was fantastic and we are so grateful to them for everything that they did and just really continue to do because that's still where we go back for our regular checkups. um
Maintaining Relationship Balance Post-Diagnosis
00:14:47
Ethan Ax
I think it is important though the parents ask a lot of questions. like Every little thing that is on your mind, ask the question. like That's what they're there for. You have to be an advocate for your child who has T1D. And if you're the one with T1D, you've got to be an advocate for yourself.
00:15:08
Ethan Ax
and I just sort of got over the notion that any question was too dumb, right, or too simplistic, or I shouldn't be asking that yet. They had to, I think on several occasions, kind of like slow us down, like that will come with time, like, you know, you're thinking the right way, but you know, you're you're not quite there yet.
00:15:29
Ethan Ax
um like with the devices like with the CGM and the pod and things like that. and And then I was like, okay, when will be we be there? We're not there yet, but what what is it, three weeks or three months or three years? I don't know. Like I have no frame of reference for when that comes into the conversation.
00:15:46
Ethan Ax
And then they would be like, OK, well, we can talk about it in like 60 to 90 days. We can kind of reassess and see if she's ready for that. I'm like, OK, good. All right. And um and then just always following that up with whatever comes next. So I would say that our education was good. I don't know if we had been less aggressive with just really pressing with more questions and seeking more information, if that would have just organically come up.
00:16:15
amanda
Yeah, okay, that makes sense, that's interesting.
00:16:19
amandacberg
Well, I would love to chat about a topic that you brought up in a recent Instagram post. I feel like it kind of got some controversy going in the comments a little bit.
00:16:28
amandacberg
Not really, but just the idea of ah sharing the load, sharing management with your partner. This is a huge thing that I think needs to be talked about more.
00:16:39
amandacberg
And I'd love to hear your perspective of how you all manage it and just your thoughts around the whole thing.
00:16:42
Ethan Ax
Mm hmm.
00:16:46
Ethan Ax
yeah Yeah. Well, I'm really glad that you brought this up because it's sort of, it is bringing flashbacks to those first few months after the diagnosis. And, you know, as you know, it's kind of just like survival mode, like all your attention goes to, okay, what do we need to do to take care of our child?
00:17:03
Ethan Ax
ah What does that look like? You're learning all of the equipment. You're learning the um ah the right dosages and what they can and can't eat and the trends. and What do you need to do with the school to make sure that they're good? ah All the things, right? And I think, so she was diagnosed in November and I think it was somewhere late December where ah we were lying in bed getting ready to go to sleep and i think i turned to my wife and i was like. Are you good i'm not good.
00:17:37
Ethan Ax
And she's like, what do you mean? We're fine. yeah And I'm like, no, no, we're not fine. like We've paid no attention to each other. We haven't had a moment to ourselves. you know we We really enjoy a and take advantage of opportunities to go out and do the date nights.
00:17:57
Ethan Ax
and spend time with each other and focus on our relationship and our daughter had got into an age you know at nine years old at that time where she was more independent. We had a whole bank of babysitters. And so I don't want to say every week, but every couple of weeks, maybe once or twice a month, we would try to get out and just spend time and focus on each other. And that had just gone away. And then all the babysitters that we had trusted, even family members that we trust, you know, at that stage, you're skeptical of everything. You're like, well, i can I'm barely hanging on, so I can't trust this babysitter who knows nothing about diabetes to come in and assist. And, you know, the grandparents are wonderful, but, you know, they're always, you know, pushing cookies on the kids. and so like Like, I don't know, can I trust that either? um And of course we can, but you know as a parent with a newly diagnosed child, you're just not sure. You're not sure what to expect. And so and so I think I said, like we we have not focused on each other. We're barely hanging on. We we are one like straw away from a total breakdown. And we've got to do something about that.
00:19:08
Ethan Ax
um And, you know, I think that she saw my point and agreed in. So we've worked really hard since then to just find a way, however small, to make more time for each other. ah We still don't get it right a lot of the times, but just carving out time to have more conversation and and maybe just forget about it even for a couple of hours.
00:19:33
Ethan Ax
ah going out and it we we made it a priority to just to find people we trust and educate the people in our circle and try to educate them quickly so that we felt like we could have that freedom and flexibility because honestly, if you are not if you are not making time for yourself,
00:19:50
Ethan Ax
I believe personally you're doing a disservice to your T1D child because, you know, the kids notice, they notice the vibe that their parents are giving off. They notice when they're under pressure, they feel it even if they can't articulate it. And I feel like just having a healthy mindset and coming at it from a healthy relationship or whatever your relationship status is, making sure that that situation is as healthy as it can be so that you're there for your child is so important.
00:20:19
amanda
Yeah, I completely agree with all of this. So once once you like had that conversation with your wife and she agreed, what what were the steps you guys took took to make that happen? You know, because I feel like all partnerships after children get diagnosed probably have a conversation like that at some point of like I we are two ships passing in a night we are roommates I like who are you who am I what comes first kid comes first but then but then what comes next like me pouring into myself so I can actually pour into the relationship us pouring into the relationship so the
00:21:02
amanda
we are secure enough to go pour into ourselves. Like, I I don't know. Can you take us through that? Like how you guys managed to get there?
00:21:10
Ethan Ax
Yeah, I think that there's there's so many things. The first, I kind of touched on this earlier, was that childcare piece. like We have to find out who in our network can help and give us a break, even if it's just time to go out, like have dinner together, and come back. And what is it that they really need to know?
00:21:31
Ethan Ax
Like it and honestly, my perspective is like blood sugars don't have to be perfect. Just keep our kid alive till we get back home, right? Like and that like that has to be enough at some point, right? You know, for two hours, what's the worst that can happen if you are giving your caregiver the resources that they need and the understanding that they need somebody that you trust, right?
00:21:54
Ethan Ax
So so but you're just allowing ourselves to get to that point. So really, I think the next day or that weekend or whatever it was, we kind of thought through, okay, you know who do we have in our circle that could do this? and um And then trying to give them the education. And there's so many resources out there right now um to help prepare people.
00:22:14
Ethan Ax
ah So I think that was part of it, certainly. And then I think the other thing is, is I think that, and I'm finding this in the comments that have been on some of the Instagram posts, you have parents that maybe have different standards of what's acceptable.
00:22:31
Ethan Ax
right? And so you know what what are your risk tolerances or your you know what are you willing to accept in terms of fluctuations in blood sugar or how tightly that this has to be monitored? and And so I think that there has to be a meeting of the minds of you know what what is the you know What's the bare minimum standard of care that is gonna be required that we have to be comfortable with in order to make time for each other and um you know what are the things that um but you know I want her to trust me that if if I'm the one
00:23:11
Ethan Ax
that is at home with our daughter, that I am giving her a level of care that meets my wife's standards. And and of course, ah my wife, who just happens to be the one that's more like, you know, on top of managing all the details of diabetes, right? So so she obviously has a high standard of care. So I have tremendous trust when when she's at home with our daughter. But, you know, I i think that the Each spouse has to be kind of on the same page on those things.
00:23:44
amanda
Yeah, that's it that's an amazing point. And I feel like you just listed ah sort of like a small checklist of action items for for couples, which is so helpful. This this list of like, why what is my expectation when I am solely in charge? What is my expectation of my spouse and my partner when they are solely in charge? Can we if If my expectation is 90% in range or whatever, can we be lenient with the spouse who naturally has less time with diabetic management because they are working out of the home or whatever? you know And like what what number does that look like where the spouse feels like I'm comfortable and I can work hard to make that happen. And then the the primary caregiver is like, I am also comfortable with with that level of care. um Yeah, man, those are some fantastic points. It's interesting, one of the i I think one of the turning points for my husband was when I finally like had a girls night or like a two night trip or whatever,
00:25:01
amanda
he put, we didn't have this conversation beforehand. I more so was like, I am going to explode if I press start on one more bolus right now. So I have to get out of here. And so I really had like nothing in my head about expectations other than keep her alive and do a decent enough job, please, that she doesn't feel horrible the entire time. And I knew he knew how to do that. And I didn't even say that I did not verbalize that at all.
00:25:26
amanda
But what I did do was like, or what he did was when I was gone, he apparently made it his mission to get to 100% time and range. And I was like, yes, I know Raquel's laughing because Raquel knows Danny intimately and like his personality. And so it makes sense that that was what he did. Like,
00:25:47
amanda
I don't want her to think about it. i don't want her He literally was thinking, I don't want my wife to get a single alert because I want her to have 48 full hours, diabetes free.
00:25:58
amanda
And when I got home, he was like, I tried so hard. He got to 98% in range, but he killed
Partnership and Sharing Responsibilities
00:26:06
amandacberg
incredible Yeah.
00:26:06
amanda
himself over it.
00:26:09
amanda
And I was like, Babe, I love you so much and I'm so grateful that that is what you wanted to do for me. But one, that is so much pressure on yourself.
00:26:20
amanda
Two, diabetes doesn't play fair. So even if you did everything right, it still would potentially not have ended up as beautiful as it was. Three, I was so far gone and like diabetes was not on my mind that I wasn't going to pay attention to alerts and alarms anyway because of how deeply I trust your management and you as a father. And I was like, four.
00:26:45
amanda
When have you ever expected that that is my level of care that needs to be given to Hattie when you are at work, you know, Monday through Friday, eight to five, like you don't have that expectation. Sometimes if you come home and I say like, God, I'm sorry, I really was trying to get that 300 blood sugar down. It was so stubborn for four hours. Like he's like, Oh, why why would you say sorry? You know, um, and so it was,
00:27:14
amanda
That was a major turning point in our relationship and our partnership with diabetes was like, we finally got to this place of being like, do your best with where you are at mentally and with the data that that is being given back to you. And also making sure that you live your life and you put the kids first and you are mom or dad first, not pancreas first, you know?
00:27:40
amandacberg
And that is so Danny. And I also think Ethan, Danny, both that's natural. It seems in your personality to want. to aim for that high percent in range, if possible, and also to help your own partner so that they can take a break. But I'm curious, Ethan, if you have any tips for those listening who are dealing with a partner that they just don't, I don't want to say care as much, but they don't have that same investment in it. Cause I think that's where a lot of parents are really struggling. Like, is it even possible? And you know, for both of you, do you have any thoughts on this too?
00:28:12
amandacberg
Get them to try harder. How do you do that? What's the appropriate way to go about that? I don't even know.
00:28:18
amanda
Yeah, I want to hear it used in sauce.
00:28:18
Ethan Ax
Well, yeah, thanks.
00:28:22
Ethan Ax
I've thought a lot about this because I think it's super important to try to have empathy for the other spouse and try to understand like why is it that maybe they are not engaging as much in this process as I want them to.
00:28:40
Ethan Ax
because yeah it started to happen to us and you talked about turning points, Amanda. you know There was a point where, okay, in the first, I would say 60 days of our daughter's diagnosis, we were like both there. We're both there for every appointment, like wanting to absorb as much information as we can. But then after that, okay, we start to settle into our road routine. And I had a ah work trip come up So, I missed an appointment at the diabetes resource center. And so, it was like what a three-hour appointment. And of course, my wife's there getting all of this information, hearing from all these people, asking all of her questions. And you know she gets home and I ask her, how did it go? And she
00:29:26
Ethan Ax
downloads all this information to me, but of course she's going to miss details. right And then I think that there was another meeting, maybe a meeting with the school or um you know something else like that. And of course she was there meeting with the nurse and working out the plan. And okay, so now it was just two things.
00:29:48
Ethan Ax
But it was two things that I missed that are like super critical to the future care plan of our daughter. And so now I feel out of the loop. like How did the equation change? um you know what What exactly did we agree to with the school? And you know she tries to communicate that to me, but there's little nuances that are missed. So now when something comes up, you know she was like, oh, yeah, we decided we were going to do this.
00:30:14
Ethan Ax
And I'm like, well, that's a so that's a surprise to me. That's news to me. And I felt myself starting to drift away. Like, well, of course I'm not going to step in to respond, or of course I'm not going to, you know, bolus our daughter, however much because I wasn't there. I'm not quite sure what you agreed to, or I'm not sure what we're doing now in terms of like how we're going to manage this thing. And so, um, you,
00:30:41
Ethan Ax
you start to disengage because you're like why don't have all the information i'm not the one that's been a part of these conversations so it's easy to feel like i'm no longer qualified to be involved and and so then it just chips away and with each thing it kind of whittles away about your kind
00:30:52
amandacberg
One more.
00:30:58
Ethan Ax
ah Your control and the authority that you feel like you have and then the other spouse sort of takes over and it just is a natural progression and I had to like stop and say like No, like I need to know like I want to figure it out Like I don't want you to go into the PDM and and do whatever like i I want you to let me do it I want you to let me figure it out. I want you to let me do the math and um And so there is again for my wife she had to let go of a little bit of control to let me do that and be comfortable that i may not do it exactly like she would or i may not get it right or it may not be perfect so she had to give a little bit and then i had to assert myself a little bit um but i think just.
00:31:35
amanda
ah
00:31:48
Ethan Ax
Again, having that empathy, like in my wife's case, she had to have empathy for the fact that like I wasn't there, I didn't have all the things, and maybe that's the reason why I wasn't contributing as much. It wasn't because I didn't want to, but I didn't feel qualified to. But then on my hand, I had the responsibility to kind of assert myself and say, I want to be better. um So if you could kind of diagnose Like, you know, why is my spouse not as engaging as much as I used to? Is it a knowledge gap or a confidence gap or whatever? Maybe something else that's unsaid, then then you can work backward from there to get them more involved.
00:32:23
amanda
That is such a great point and so beautifully and eloquently explained. My question for you as a father and a male and husband is, is there any part of you that ever has felt like I don't want to. I just don't want to. Like it seems hard, it's scary, I didn't sign up for it and I'm sort of just gonna like fade into the background because I can and I can kind of like hide behind
00:32:58
amanda
I'm providing for the family outside of the home, or I've got all these like hobbies, I'm busy, you know what I mean? Because I think that there are some probably wonderful, and I hate to say men, but like that that's the common thread like when we get these DMs and get messages and get into conversations with families, it's always um the husband.
00:33:22
amanda
So just know that I'm speaking from like the the people who have like talked to me and please don't please don't feel offended if this is you know not you and I'm absolutely not generalizing.
00:33:29
amandacberg
Yeah.
00:33:34
amanda
I'm just saying for those specific relationships, those dynamics where the husband is sort of like, I don't want to. Can you speak to that in any way? Can you shed light on that? um And how, if if you ever felt that, how you would want to be talked to about coming out of that place.
00:33:57
Ethan Ax
e um can i Can I share sort of like my raw unfiltered response first?
00:34:04
amandacberg
Please.
00:34:04
amanda
Yeah, yeah.
00:34:06
Ethan Ax
My raw unfiltered response, and I know this is a family podcast, but that's bullshit. Man up and get over it.
00:34:12
amanda
Yeah.
00:34:13
amandacberg
Yes.
00:34:13
Ethan Ax
like
00:34:15
amanda
Yep.
00:34:17
Ethan Ax
Get over it. If not for your spouse, for your kid. They need you now. So suck it up and get involved and figure it out in whatever little way that you can.
00:34:23
amanda
Yeah.
00:34:30
Ethan Ax
And and I mean in whatever little way. ah About a month ago, my wife made the comment. She's like, I am always making our daughter's lunch, which is such a process, right? It's like one of those things that as having a T1D kid that you know they just can't go and eat the school lunch. It's it's just not that easy, right? like So we we make lunch for our daughter because she's kind of picky about what she eats and we want to make sure we're getting the exact number of carbs down. And it hit me. like no i like i don't i'm never involved in that stuff like i like she i do all these other things but i never help with this and it's always a chore so i'm gonna suck it up and ah like i don't wanna do that like that's not my favorite thing to do is fight with a kid about what she wants for lunch but i get in there and i figure it out and even if i can help make lunch like one time a week.
00:35:20
Ethan Ax
then I feel like I have unburdened my wife from that just one time. And so if you're a dad that's not even engaged at all in any of it, like volunteer to help make your kids lunch. like Just start there and your spouse will probably be so flabbergasted that you even volunteered to do that much. right Think of it as a gateway drug to doing more things and helping out with your dog. Just whatever small thing. you don't have to I think it can feel like a mountain. It is so overwhelming, the amount of things that you think you need to know to manage your child's diabetes, that it's almost easier to say, I'm not going to engage because the mountain is so huge. Make the mountain smaller.
00:36:09
Ethan Ax
for your spouse i guess i'm kind of getting there to a piece of advice so so if you're the spouse of of somebody that is not engaged i would say give them just a sliver of something that they can feel responsible for and and then you have to be okay with that
00:36:10
amanda
Yeah.
00:36:27
Ethan Ax
Like you have to see that as progress and give some sort of positive recognition as silly as that may sound because you're doing 95% of this stuff and they just made lunch one day.
00:36:29
amandacberg
Thank you.
00:36:37
Ethan Ax
Wow, thanks a lot. But no, like give some positive recognition. Like thank you so much.
00:36:44
amanda
Yeah.
00:36:44
Ethan Ax
That was really helpful to me. Like you don't even understand how much like that just takes off my shoulders to do that one thing. um You shouldn't have to treat it that way, but in the in the mind of the other person, like it helps to feel valued and like, okay, you know I got some positive encouragement for doing that one thing, maybe I can make lunch two days in a row, or maybe that leads to a conversation, well, tell me more about how you do this. right um I think just any little thing like that can help bring people along.
00:37:17
amandacberg
I agree so much. Also, you're making me think about like the ways that Kevin, my boyfriend, helps me so much because he's not in the weeds of the settings and all of that, even though he did recently ask me, like I want to understand what basil is and bolus and all of these terms you're always using. And he probably could do a great job, but it's the little things, like even picking up low snacks for me. Like, okay, I have to deal with all these settings and I need to go to the store just to get more juice. like That's an annoying thing, right? Or getting me juice in the moment when I'm low. or like doing the dishes because I'm low and not feeling up to doing it. You know, like those things don't have to be so diabetes related for them to make a difference because just like I'm dealing with all these extra things on top of life, that's also what you as parents are doing. So I think even if you don't feel like you understand the nitty gritty of settings, that doesn't mean you can't help.
00:38:08
amanda
Yeah, that's such a good point. i um You made me realize that like Danny started picking up a lot more than I even like realized because now we're so settled into our routine and it was massively helpful. The the main thing a while ago was he started um He started doing all the ordering and stuff through insurance.
00:38:34
amanda
So he deals with the insurance.
00:38:35
amandacberg
Egg one.
00:38:36
amanda
He calls, he places the order, he notices that supplies are low. That is his job. It was my job for a while. And that on top of everything else felt super overwhelming because I would just get caught up in it. you know It's like i I work for Type 1 Together, I stay at home with the kids, my brain is like at 11am, oh my gosh, call call Optum so we have enough pumps. And then I forget by the end of the day and then it's the next day and then I'm kicking myself and whatever. So he does all that. That's amazing and so hopeful.
00:39:10
amanda
um We do have to still go to the pharmacy on occasion. I can manage that pretty easily, but if it's ever too much, that is as simple as a call or a text, hey, on your way home, can you swing by? And that's a no brainer, no problem. Not even a lick of, there's traffic, I don't want to, I'm too tired, I'm starving. No, he's just like, yep, got it. um And then with all the school stuff that had been happening for a while,
00:39:36
amanda
I started to get really worn down with calling into the school because it was just like, I could just feel, it it was so uncomfortable, you know, just so uncomfortable. And he was like, as long as I am not in a meeting that I cannot get out of,
00:39:54
amanda
I will take on every single call. So if she's going low, if there's something going awry, if he just needs clarification, he is calling and that has been so helpful because I'm doing mostly everything else all email correspondence and all um you know, like spearheading of making these changes across the district. And so just like even calling the school where that, okay, that's not my responsibility. She's going low. He's got it. And the thing that like helps even more is when he knows that there is an important meeting that he wouldn't be able to get out of coming up. And he tells me the day before or a few hours before,
00:40:33
amanda
I am in a very important meeting from one to two this day. If she goes low, I'm sorry, love, but it's on you. And it's like, it's okay. I can handle that one. know So just some examples.
00:40:44
Ethan Ax
What I like about what you said there, Amanda, is like, you're kind of telling him what you need. And I do feel like that's an important part of it, because I think, and this it really isn't just about T1D, it's about, I think, just relationships in general.
Communication and Support in Diabetes Management
00:40:58
Ethan Ax
But a lot of times, you know, if a person's pulling more of the workload, then they feel like it's obvious, like, isn't it obvious that I'm the one calling the school all the time, that I'm the one picking up the supplies, that I'm the one handling all the bills, that I'm the one et cetera, et cetera, et cetera. Like, how could my spouse not know? How could my significant other not know? Because like clearly, I'm running around like a chicken with its head cut off trying to make all of this work. And and and truly, and ah to all the moms out there, I know this is hard to believe. like Truly, guys can be oblivious. We just don't realize.
00:41:37
Ethan Ax
Oh, I thought you didn't want me to do that stuff. I thought you were going by the pharmacy anyway, right? And so a lot of times it it is it is truly like, if you want me to do something, I will do whatever you want, but you need to tell me what it is because I feel like I'm going to do it wrong.
00:41:57
Ethan Ax
or I'm doing it wrong. And so and so i'm I'm hesitant to do it. ah It's almost like I'm seeking permission from my wife to be able to take charge for this thing. And her saying, this is what I need from you like gives me a purpose. It gives me you know a task that I can accomplish that I know is helpful to her. And as crazy as that sounds, it just wasn't always obvious to me. So you've really got to vocalize those things, even the ones that seem totally obvious.
00:42:26
amanda
Yeah, no, I agree with that. There's, it's interesting because there was definitely a point in our relationship and I think that this is um kind of a talking point for our generation anyway of like, like we need the mental load to be relieved and part of the mental load includes like, okay, we have to tell you what we want. Like, can't you just figure it out and see it for yourself? But once I got to this point of like,
00:42:54
amanda
Okay, we're going to have this conversation. And I am going to say, please start opening your eyes and figuring some things out and taking an initiative on your own. Once we had that conversation, and I gave it some time, I realized what he was seeing versus what he wasn't. And instead of just being pissed about what he wasn't, then it was like, okay, now you're truly not seeing that because you tried your best, you put your best foot forward.
00:43:21
amanda
Initially and then there's still some stuff and you're just clearly not seeing it and that's okay so now i'm gonna help you and that is where the the hey can you do this for me hey this is something i do often would you mind taking over and Not him taking it on and being like oh this is mine now until further notice kind of a thing instead of like yeah I've got it this one time babe no worries you know is very like oh I can totally do that I'll make this part of my routine and that has been so helpful but
00:43:54
amanda
Yeah that's a it's a good point because yeah you're right like I do think that guys can be oblivious and then it gets into this if it's never discussed it gets into this just like never ending spiral of you're not doing enough well you're not telling me what to do when really like we're on the same team and we're trying to get the same things done.
00:44:14
amanda
and just yeah having empathy for your spouse and recognizing the limitations and stepping in the one time to request help, but then the spouse meeting you where you're at saying, oh, you've requested my help, now this is mine.
00:44:27
amanda
you know
00:44:29
Ethan Ax
Absolutely. and i just want I want to give a shout out because I think about this often.
00:44:31
amanda
Oh my gosh, yeah.
00:44:33
Ethan Ax
I want to give a shout out to the single parents out there and the people. like i think you know I'm making an assumption that three three of us probably come from a place of like you know a lot of support and stability.
00:44:48
Ethan Ax
and There's tons of people out there that don't have those things, don't have the network. They're trying to figure it out on their own.
Acknowledging Single Parent Challenges and Conclusion
00:44:57
Ethan Ax
I just can't even imagine because i'm so grateful for the situation that that's put us in so if you're out there trying to navigate this on your own man more power to you you're doing a great job.
00:45:09
amanda
I mean, yeah, mic drop. That is so, so, so true. If anyone is listening who is doing this solo, um I hope that you weren't sitting through that entire episode going screw you guys. And just know that, yeah, you are some true superheroes. That's spot on, Ethan. Thank you.
00:45:32
Ethan Ax
We see you, we feel for you.
00:45:34
amandacberg
Yes. All right. Well, Ethan, we have to have you on again. You're not going anywhere. You're going to keep making content for us, hopefully. And if anyone has specific topics you want to hear from Ethan on, please let us know and we can pass those along. And yeah, I just can't thank you enough. This was a really needed conversation. I know I'm not in that position at all of like, you know, being a type one parent, but I can, like Amanda said, I see all the DMs coming in and it's such a,
00:46:01
amandacberg
issue that needs to be addressed. So thank you for being so open about it.
00:46:03
amanda
Absolutely.
00:46:05
Ethan Ax
Hey, thanks for having me and allowing me to share the dad's perspective.
00:46:05
amanda
ah
00:46:09
Ethan Ax
I'm so glad to be here.
00:46:11
amanda
It's the best we need. We need the dad's perspective for sure. Should we do a blood sugar roll call before we hop off?
00:46:17
amandacberg
Let's do it. Oh my gosh, I'm 108.
00:46:21
amanda
ah Heck yeah. Nice.
00:46:22
amandacberg
Yay. That's a good sign about this episode.
00:46:26
amanda
Go ahead, Ethan.
00:46:28
amandacberg
susan
00:46:28
Ethan Ax
All right, I see our daughter is, ooh, I'm not so sure I'm proud of sharing this number publicly. She's a 161 slide arrow up. ah So maybe there was a birthday at school that cupcakes were brought in, something, I don't know.
00:46:38
amandacberg
That's fine.
00:46:40
amanda
No, that's freaking beautifully in range. I've been like, oh yeah, 258, whatever. It is what it is.
00:46:47
amandacberg
Yeah.
00:46:47
Ethan Ax
But yeah, it is.
00:46:48
amanda
It's diabetes, man. Hattie's 132. We're having um a really beautiful blood sugar day at school. I'm so grateful um and we'll never take those days for granted.
00:46:59
amanda
So yay. Okay. Well, thank you everyone for tuning in and we'll catch you all next time.
00:47:07
amanda
Bye.