Sustainable Parenting

62. Empathy and Resilience in Parenting with Chronic Illness

• Flora McCormick, LCPC, Parenting Coach • Episode 62

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In this episode, we hear insights about empathy and resilience, in parenting through health challenges.  Jonathan Stewart, a community leader and amazing dad, shares his journey of raising 3 kids while dealing with chronic illness.

After listening to this episode, you will:

  • Learn how chronic illnesses affect parenting and mental health.
  • Discover ways to connect with your kids even during busy times.
  • Understand the importance of open talks about tough topics like death and loss.

Jonathan's story highlights the power of empathy, understanding, and strong family bonds. If you are in a similar situation, feel free to reach out to EverGreen Adventures, a nonprofit founded by Jonathan that supports people with chronic illnesses and their caregivers.

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Speaker 1:

you're listening to episode 62 of the sustainable parenting podcast, and today is a little bit of a side note from our usual tips and tricks to a deeper, really emotionally connected conversation with an amazing dad that I know, who's both a good friend and an inspiring local community leader here in our Bozeman area, who is fighting chronic illness and talks to us today about parenting with chronic illness and what it's taught him and ways that it has helped him enjoy parenting even more and the ways that it presents unique strengths and challenges. Welcome to the Sustainable Parenting Podcast. I'm Flora McCormick and I'm here with my special guest, jonathan Stewart, and we are talking about living and parenting with chronic medical challenges.

Speaker 2:

Let's say yeah, just after my 11th birthday I was diagnosed with type 1 diabetes. It was pretty overwhelming, especially at that age and that time in medicine. From a medical professional perspective, it was care by I would say care by scare. At 11, I had a doctor tell me if you don't listen to me, you'll be dead by 20. If you don't listen to me, you'll be dead by 20. If you don't listen to me, you'll lose your vision and your legs. That was their motivation.

Speaker 1:

Which I could imagine, like I talk about, is scare with discipline. It's like that could maybe get you to comply, but also maybe cause you to just be rebellious or sneaky.

Speaker 2:

Oh, totally.

Speaker 1:

Like what? How did it affect you?

Speaker 2:

Yeah, so it took me until my late 30s. I'm 41 now and I associated blood sugar with me as a human. Bad blood sugar, bad person.

Speaker 1:

You failed somehow.

Speaker 2:

I did it to myself. Yeah, I made a poor choice, you know, as a kid, you know there's obviously hormone and there's just so many different stressors that impact your blood sugar and I was just taking cues from the doctors of that scare, those scare tactics, and so I really associated blood sugar control with how good of a person I was, and it took me a really long time to to work through that. After my diabetes diagnosis I was like, well, that's, that's it Right. Like I've I hit my minimum.

Speaker 1:

Yeah, I've got my quota. I'm good here.

Speaker 2:

I've paid my dues and, um, I'm good to go. So I, in my early 20s I started having a lot of GI distress. So I I was an avid and an avid runner and cyclist, and so I was. I was running a fair amount and running marathons, doing you know half half Ironman distance, triathlons, hiking, camping, doing anything I could activity-wise, and loved it, and started having stomach problems, just constantly having to run to the bathroom, just GI distress. And so every doctor said, oh, you're too wound up, you got to relax, you're too stressed. And all the years kind of blend together now. But it was about three years ago that we found lymphocytic colitis. I was referred to Mayo Clinic because the GI doctor was not sure of sort of next steps. I went on multiple infusion treatments to suppress my immune system. None of those worked and eventually led to the diagnosis of sarcoidosis as well as colitis.

Speaker 1:

Okay, so I want to do the math here because if you're saying, these sorts of challenges started around your late twenties. You also have like a 13-year-old currently and a 10-year-old and a 2-year-old.

Speaker 2:

Yes.

Speaker 1:

So how did this impact you choosing to have kids yeah, and having them, and doing early parenthood, while having all these challenges?

Speaker 2:

Yeah, so it's. I did not want kids, it was not. Uh, and some of that was the scare tactic. I was told by doctors don't have kids. I was told by one doctor let this. And now this is when we just, you know, diabetes is a lot of work, and so to have diabetes on top of all these other things is a tremendous strain. But I had a doctor tell me don't have kids.

Speaker 1:

For that reason you won't let the work.

Speaker 2:

Let diabetes stop with you.

Speaker 1:

Oh, because it's genetic. Yes, there's all sorts of different.

Speaker 2:

You know, for the most part, yes, that is the conventional wisdom, but they told me, let this end with you, don't pass this on.

Speaker 2:

So I fall in love with this amazing woman, and how and as we talked about it, tara's vision for a family was too too good to me. Uh, to just sounded too good and I and thankfully we met, uh, an endocrinologist at Georgetown University that changed my life for the best. He's the one that got me into running long distance. He's the one that basically told me he said, take everything that you've been taught from your previous experiences and forget about it, because it's garbage and it's not accurate. You want to have kids, have a basketball team Like the. You know the he. He walked us through the percentages and the chances of the kids getting it, uh, but it. What struck me was Tara, and what she said to me was, if one of our children, ever, you know, got, was diagnosed with diabetes, we would know how to handle it better than most.

Speaker 1:

Yeah.

Speaker 2:

And that completely shifted my view. But I think being sick for now, most of my I mean not to be dramatic, but really for most of my life I think it certainly adds perspective and it has helped inform my approach to parenthood and how I engage with the kids on a consistent basis, and so in a way I kind of see it as a gift because I didn't have to wait maybe until old age to get some type of maybe life perspective that I maybe wouldn't have had without being sick. But it's certainly influenced how we talk with the kids about difficult subjects and support them through different scenarios.

Speaker 1:

Yeah, I want to talk more about that. So, a, how did you approach, or how you approach, talking to your kids about your medical status, yeah, and how has it impacted, like you say, just how you talk to them about different subjects and things.

Speaker 2:

we. We keep it factual, uh, but, and we keep it consistent and we always I kind of hurry up and listen like I'll set the table in a sense. Gosh, I'm just using all these analogies, but the hurry up and listen is something that I've thought about. I just feel like we're always doing something, like so many families, and I'll just take a time and zip it and just hear what they have to say.

Speaker 1:

I think every single parent could stand to do a lot more of that, myself included.

Speaker 2:

you know it is we're such doers, yeah, yeah.

Speaker 1:

And even when we want to connect to our kids, sometimes we think that's what am I going to say to my kid?

Speaker 2:

or what are we?

Speaker 1:

going to do A game, an activity and, I think, leaving space for just listening in the little moments and the big moments and being uh silence leaving space? Yeah, cause I imagine just quiet.

Speaker 1:

So let's say you set the table You're like so I'm getting my colon out and here's the facts. Do you guys have any questions about that? Or, you know, tell me your thoughts and then I imagine what you're saying is like. In those moments there may be questions right away, there may be some silence for a bit while they're thinking they're absorbing and like leaving space for that.

Speaker 2:

Absolutely and just making yourself, as we all do I mean I, you know make yourself available for whatever question. It may be the most random time and I think that's also a challenge. Again, as we're doers, we're getting the table set for dinner, we're making dinner, we're cleaning up, we're chasing whatever Finishing guards, all the stuff, yeah.

Speaker 2:

Yes, yes, exactly. We're going to sports, we're going to school, and so it's just a matter of just stopping and you know whether it be, you know, in a car ride someplace, or maybe just not saying anything and just waiting to see if maybe you know they have a question that, um, that does come up and we're able to talk about it.

Speaker 1:

You were, you're just you, not just you focus on being attuned like read the vibe, and I think the hardest part of that is like it doesn't always come in the most convenient time right. Of course it'd be lovely if it's like the middle of a Saturday afternoon Nothing's going on. Sometimes, that moment that we sense the tension and our kids might want to say something is like bedtime and you're like I'm done.

Speaker 1:

I'm tapped out for the day I bedtime and you're like I'm done, I'm tapped out for the day. I just really, really don't want this to be the moment that you're going to share a meaningful thing with me but then it is, and so like to tune in and then be like I'm gonna, I'm gonna make space for this right, I'm learning a lot.

Speaker 1:

It's it's a lot of fun, but it's a lot so this makes me wonder when you think of like behavior. Often kids, if they're struggling with something, they don't say I'm struggling with something.

Speaker 2:

Right.

Speaker 1:

They roll their eyes at you, they ignore you, they snap at you.

Speaker 2:

Yeah.

Speaker 1:

And then we have to be the detectives to maybe see under that and say, like you know, it seems like you're a little off. What's going on. Yeah, is that been true?

Speaker 2:

in your relationship with your kids. Yeah, yeah, and it's difficult for me because it's so. It's just, it's tough, it's hard not to. It's hard to like take a step back and say, okay, like, let's you know, get curious, not furious.

Speaker 2:

Yes, yes, because yeah, inevitably when it's hard to like take a step back and say, okay, like let's get curious, not furious. Yes, yes, because yeah, and I believe when it's at the end of the night or the Sunday night or just inopportune time, and yeah, I feel like I've, I've, I'm still have a lot of work to do, but I've gotten better at sort of kind of asking internally like, okay, what's, what's this really about? What's going?

Speaker 1:

on Is everything okay.

Speaker 2:

Is there something that she's dealing with, that she's going to want to talk to me about, or the boys talking about? I mean, you throw in our two-year-old into the mix, right, and so what's that like for them? You know a teenager and now a 10-year-old and how they're. You know getting along with this two year old and why the two year old gets to. You know do any quote anything.

Speaker 1:

He wants things like that Because he's getting picked up or carried.

Speaker 2:

Yes, why does he get to you know X? And so originally getting really frustrated with that and then realizing, okay, well, one, maybe they're right in certain instances.

Speaker 1:

That's very good to be humble to reflect on that.

Speaker 2:

And then two. How can we have a conversation about it and how can I hear what you have to say, rather than just because he's two and you know it's?

Speaker 1:

everything, it's everything. It's the listening first, because people are always more willing to listen when they first feel heard.

Speaker 2:

Sure, right. Yeah, that makes sense.

Speaker 1:

In our back to the busy pace of life. I think we just want them to hear us and do what we're saying and I mean myself included it takes pause. So yeah, and then you said it affects how you approach certain topics with your kids. Is there anything we haven't covered about what you meant there?

Speaker 2:

well, I mean uh, death is one like you've been, oh yeah, yeah, really open, talking about what that would look like and what that means what your beliefs are spiritually yes, yeah, all things well, and that talk about kale.

Speaker 2:

I mean, that was uh, I can't remember if I told you this, but uh, we were and we're careful, right, we don't it's. It's not like we say, well, dad's getting ready to have a major, major surgery and we're going to talk about death now, like we're very, we are strategic and when, when we are able and willing to talk about these things, uh, but we were, we, we were talking about death one night and I mean, the reality is, my aging is, is not going to be graceful, and we know that. And death has never truly been a topic that I'm afraid to discuss. And maybe, again, it's because I'm so connected health wise, I don't know Um, but we talked about um, just our beliefs, again, like you, you, you perfectly summarized and I said, well, you know, I just I'm going to be cremated, that's they. They asked me what are you going to be buried in?

Speaker 2:

Where I said well, well, I'm just going to be cremated, I don't know. And caleb said that's good, I'm glad, because then I'm going to get some of your ashes and I'll go skiing with you and I'll be able to ski with you even after you die oh my goodness yeah, that one was, that was that was tough, precious.

Speaker 1:

Yeah, I mean that's tough to hear, oh beautiful no, but just tough in the most. Oh gosh, yeah it was just beautiful. Yeah, um, wow it, and I think that's actually amazing. I think death is one of those things we do not talk enough about.

Speaker 1:

I mean I would say birth and death just for a little plug towards, like moms and childbirth and all those things. There is so much that's not really talked about in that whole process and the transition of becoming a mom and how it affects your body and your sense of self and death. I just can't believe how much we don't talk about either one of those topics.

Speaker 2:

Yeah.

Speaker 1:

And I would imagine well, I don't know. Kids can be funny too around death, though.

Speaker 2:

Oh yeah.

Speaker 1:

My two year old, I'm sure like one of our kids, would just regularly say things we do talk about death, just the various topics in our family too, and I think and she's very flippant Like yeah, well, someday you'll die, mom, oh, totally and someday, you know, and it's great it's not an emotional topic I think, sometimes that's hard for parents.

Speaker 1:

They want to think it's going to be some sort of dramatic like yeah, but there can be anywhere between super, just very concrete and or so good, really emotional and confused, or like very sentimental and special, like Caleb.

Speaker 2:

Yeah, no, it was just. It made me so happy. It was such a comforting thought and it also I was. I am grateful for him and his sort of social acumen and his sort of social acumen. He's just, he's 10, and I feel like he's a little bit beyond those years, but we talk, obviously, with Alex being two. We talked a ton about birth prior. Well, in the middle of all of our health challenges, as you know, we had three pregnancy losses, two that were incredibly late, um, you know, plus 20, 22 weeks ish in that range. Um, so that was the kids were old enough to know what was going on and know that a baby wasn't coming home. Uh, so having those conversations as well kind of helped, I think. Um across the board.

Speaker 1:

Yeah, so so you've had a lot of very open, honest conversations with them about life and death and challenges in between.

Speaker 2:

Yes, Just about everything. And then I'm always amazed and I just wonder do we just don't give them enough credit as far as what they can handle? Because it's always amazing to me how resilient and astute they are.

Speaker 1:

Amen.

Speaker 2:

Maybe it's too idealistic, but we try our best to be open and listen and accept conversations, accept topics that we may not love, but we're happy to talk through in hopes that when a very important conversation or topic comes up, they are okay coming to us. Yes, so we listen to the talks about some blogger video blogger that does you know, jumps off, you know, just random things that you're like oh, my gosh, yeah, I don't, I don't want to hear about the person that you know eight, 30 saltines in a couple of seconds. Whatever it is, whatever the challenge is, yeah. But then in the back of my mind it's like, okay, well, if we let's stay present, this is the attunement.

Speaker 1:

again, yes, thank you, I'm just gonna tune in to what this moment is for them yes the chance again.

Speaker 1:

Yeah, to me I call this like redefining the golden moment I used to think the golden moment of parenting was always going to be like when I'm sitting on the edge of their bed and I say this wise, you know thing, and we're just snuggled up and they're like mom, you answered my question perfectly, but it's not the golden moment actually. Is this little teeny moment, right Like that, that time where she's telling you about the crackers and you listen, listen, listen, and then maybe you drop that one little wise seed, that's like. You know, maybe we don't know all of the things that that person's really got going on, positive or negative, in their life, you know, or something, and then you just leave it at that, Just let it be.

Speaker 2:

Yeah.

Speaker 1:

I feel like those are the golden moments.

Speaker 2:

In closing, I know you have a nonprofit that supports other people that are dealing with challenges. Tell us about it. Uh, yeah, so Tara and I uh started, um, evergreen adventures 18 months ago. Uh, so our, our goal is to just provide a support structure, uh, for folks with chronic illnesses and provide, you know a. Tara always says and I and I love it. You know we're, we're a facilitator. You know, I'm not a, I'm not trained in being, you know, a support group organizer or manager, but I am trained in being sick. So we serve as a facilitator to connect folks within the chronic illness community with each other. And again, as I said earlier, caregivers it's providing support, information to caregivers because they are lost. You all are lost in the shuffle at times. Being a caregiver or provider in some format, some fashion, we also get outside. So any way we can reduce the barriers of entry to get in the outdoors for people with chronic illnesses.

Speaker 1:

Amazing. Yeah, and you are. I love your tagline of being chronically outdoors. It's like the perfect connection.

Speaker 2:

There's fun to be had, even even when you are sick. Um, there are, whether it be a parenting moment that you're capturing and kind of storing that away for a time when you really need it because you're very frustrated. Getting out on a hike or just going for a walk around the neighborhood. You know, the last few weeks my health has gotten to the point where literally a walk is really all I can muster. But a walk is, for me, is better than not moving at all, and that movement provides mental health benefits, it provides physical health benefits, so something as simple as that. So that's really our goal is just to kind of shine a light on it, provide support for folks with illnesses, caregivers, and also have some fun. I have a some say dark sense of humor. I just see it as I've been gifted something that helps me get through all of the doctor's appointments and very heavy topics by having a sense of humor that just has fun with it all.

Speaker 1:

I think it's like yeah, what I keep thinking in our last couple minutes of talking is like you are the epitome of like dialectical thinking. Have you done dbt in?

Speaker 2:

your therapy a little bit, not as much as I I would like, but yes it's the essence of like.

Speaker 1:

One of the main ways I present it in the parenting world is I love you and the answer is no right. You've heard that.

Speaker 2:

I've gotten better I'm getting the sticker I I and it's, and it had an impact on me and I'm not just saying that because I'm here and we are friends. It had an impact on me and really had me kind of revisit some of those lessons that I think I had forgotten.

Speaker 1:

So yeah. I'm getting there you're living, but your whole life perspective, I think, is very much this like that's what dialectical thinking is all about is the and that you can both be struggling with a really heavy day and want to go outside and enjoy the sunshine or make a like dark, funny joke about death or something. You can both, um, be you know, noticing the challenges financially into your career and say as a family, like, well, we're paying a lot for this life. Let's like do something you know, let's like have fun.

Speaker 2:

Um, so that is what I see here, so much in you, that dialect of the both sides well, and I think, true, think yeah well, and I, and I think a challenge for me at least, and I don't know what you see from others, but um, so I, I found when I would. If somebody saw me out running a neighbor, a friend, somebody in town, yeah well, you must be feeling great, I saw you running.

Speaker 1:

Well, you look good. I hear that a lot.

Speaker 2:

And it, I, it used to really bug me because I thought well, no, I, I, in all honesty, this is how I've started, because I've had a hard time how to describe how I feel. So I've now told people and not to be rude, but I say I feel bad. Like every day, I feel bad. Other days I just feel worse and it's not again, for pity. It's just hard to explain that. Yes, you saw me out running.

Speaker 1:

Yes, you saw me out laughing with the kids or doing whatever it doesn't automatically transfer to I feel wonderful it's just a way to, and I'm having a really bad day and I got to go watch my my kid do whatever yeah, I mean, I feel that if we're like really honest, I feel that in you, even in this moment, moment, I feel like you're like my bag is like you can see it is like about to overflow. It's very we're good, we're safe.

Speaker 2:

Don't worry, I won't. I won't ruin your chair.

Speaker 1:

No, and you've been present in this conversation and you're giving us this information. Like you, have lived this life since you were 11. It sounds like you've had a lot of practice with this. I can either choose to go the route of like I feel yucky and I'm going to this behavior, or I can feel yucky and choose this beat.

Speaker 2:

Yeah, and there's days I will say that I need the, the, the and isn't very strong and I feel I feel like I've gotten better at articulating that to Tara because I feel so much, I feel a ton of guilt, I feel guilty that I'm not making money. I feel guilty that, you know, I'm not able to fold as much laundry as I would like to. I am, you know, whatever. There's days where I feel I do feel terrible about it and I feel like I am a burden to Tara, that I'm a burden to my kids because I don't feel well. And so there are days where I previously I didn't articulate that very well to Tara, I kind of just festered on it and got really ticked off at myself.

Speaker 1:

Like you wanted to sweep it into their head.

Speaker 2:

Yeah, completely and just say you know what's your problem, get up Like you need to keep moving. And now I've I think I've I've learned enough from people like you, uh, to say, hey, tara, today's, today's really bad, yeah, and she knows. And then she goes with it and I'm working hard at trying to reduce some of that guilt. Or or saying, uh, last week to to Caleb hey, I'm not, I coach hockey. I said, caleb, I can't be on the ice tonight. I just I, tonight's not my night. And before that would bury me, I would get on the ice no matter what. And it would be I wouldn't feel great. The kids would be like, what's wrong with Caleb's dad? He's not, you know, he either sounds off or he just doesn't seem himself. So now I've done a better job of I feel like I've improved in communicating with Tara, communicating with the kids. Today's just not it.

Speaker 2:

Or yeah, and today is it Like?

Speaker 1:

I'm feeling bad and Well, yeah, I think a lot of that too is about authenticity and like and the stories we tell ourselves you know, we face challenges in our life. That's one thing. Then the stories we tell ourselves on top of it can create bigger challenges right.

Speaker 1:

So it's hard enough that you don't feel well enough to do the hockey. If you also put on top of that judging yourself for having that physiological truth, then it's even bigger. And so I mean I think, yeah, this is important distinction, like the, and doesn't mean that you're constantly supposed to ignore what you really feel. I think it's really important to also be leaving room that I'm authentically not able to do this physically and I'm going to try to not add that story on top of it. That makes it even worse.

Speaker 2:

That's yeah, that's incredible and spot on, because that's what I would do. I would just beat myself and just say you know you're, you are a bad parent because of this.

Speaker 1:

You're not going out there, yeah.

Speaker 2:

Because you didn't coach the other night and you missed out on this event with with Madeline, when I again didn't give Madeline enough credit to realize that she knows she knows that I would crawl down the street to get to her event, but she also knows what kind of what good is dad if he's, if he's in such bad shape like why himself so over the edge?

Speaker 1:

you might need a full day afterwards to recover.

Speaker 2:

Exactly so I think yeah, I think it's. It's been a monumental effort for me to realize like and to my, my, my negative. I think it's good right At times, like I have a motivation to excel in, even, you know, in the face of this, but at times it was a detriment because because of that, because I wouldn't give myself any leeway whatsoever, it would be right back to like, oh geez.

Speaker 1:

So Well, I think this brings it all back to us underestimating our kids and what they're capable of, and it's okay for them to have a moment of empathy and support of you, even though we always, as the parents, want to be the one giving the support.

Speaker 2:

Yes.

Speaker 1:

So, yeah, thank you for all of that. I think I'm just so glad we got to talk today same and remember friends. If you get value from today's episode, please share it with a friend and leave a review at the bottom of the main podcast home page. By scrolling to the bottom of all episodes, leaving a comment about why you enjoyed the podcast and you could be featured as our listener of the week, winning a special free course in an upcoming episode.