Parent Guilt, Gene Therapy, & Healthcare as a Human Right (with Sam Mackenzie)

Sam: 00:00:45

Parenting is about minimizing guilt. There's going to be some inherent guilt because nobody's perfect. And if you think you're perfect, you're probably doing more damage to your kid that you don't know about.

It's just living with your imperfections, being a human being and realizing you're maybe not always right and admitting when you're wrong and apologizing. Those are important things.

Emily: 00:01:07

Hello and welcome to It's A Lot, a podcast about things that are a lot. On this show, we have honest conversations about the highs and lows of social media, parenthood, and much more. When to comes it when it comes to complex topics, online discourse can lack nuance and empathy. That's why we're leaning into deep conversations, making space for conflicting, messy feelings and keeping it real about how we feel. We could all use a little more of that sometimes.

I'm your host, Emily Hessney Lynch, and today I'm excited to be chatting with Sam Mackenzie. Sam is a child neurologist specializing in neuromuscular medicine. He's a researcher in that he runs an actual lab where people use pipettes and stuff. He's also a runner, old house lover, husband and dad. Finally, Dr. Mackenzie also happens to be my son's neurologist. Why does my kid have a neurologist? That's because he got diagnosed with a rare genetic disease when he was five days old. I haven't really talked about that on the show yet, so we're going to get into that today and lots more.

If this conversation really piques your interest in child neurology, you should check out Sam's podcast, Immature Brains, which I will link to in the show notes.

Really excited to talk today! Welcome to the show, Sam.

Sam: 00:02:07

Thank you, Emily. And thank you for plugging my podcast. I'll probably double our number of listeners from single digits to double digits.

Emily: 00:02:15

They'll learn so much! Yeah. So just starting with child neurology, how did you end up a child neurologist? Were you like a high school senior dying to go into neurology?

Sam: 00:02:24

I absolutely was not. So I had a meandering course that took me to child neurology.

Honestly, I was kind of, you know, I did well in school, I was thinking science, and in college I ran track and I was more of a track and field major than anything else. But then thinking about, okay, what am I going to do as a career? I did a master's degree after college where it was going to be an exercise science.

I thought that might be a nice transition to medical school. But I ended up working with kids who had cerebral palsy as my master's thesis.

And that was just a really eye opening experience to see these kids who had this motor impairment, maybe couldn't use one of their hands, maybe couldn't walk, and trying to figure out how we can improve their lives and then also thinking about, wow, these kids are really resilient, you know, just. Just watching somebody not be able to do things that you and I do and not really thinking anything of it because that's their normal.

So that was, that was the impetus, was that experience.

Emily: 00:03:28

So what made you do both the masters, the MD, the PhD? That's like so much school.

Sam: 00:03:33

Yeah, it was a lot of school. Right. So. So after my master's degree, I applied. I really like the research part of it, so we can talk about research if you like, but for me, research is about making an impact.

Not that, you know, patient care isn't impactful too, but I think if you look at the status quo for a lot of what we are doing in medicine, maybe SMA aside, where it's like one of the shining examples of something that really works, I think we could do better. And that's where I was excited about research. So there are programs in medicine where you can not just do four years of medical school, but do a PhD.

And the nice thing is they pay for your medical school, so that doesn't hurt. So I applied to some of those programs and got into one. And so that was the impetus for the PhD.

And now it's a big part of what I do is trying to figure out how we can make better therapies for mostly kids, but really everybody with genetic neuromuscular disorders.

Emily: 00:04:27

What are some of the things you're researching right now in very like very non medical people terms?

Sam: 00:04:33

Sure. So we do, we have a few disease programs. So one is in Duchenne muscular dystrophy.

I'm going to mention that you and I were on another podcast and we had another mother with a child who had Duchenne muscular dystrophy. And that was Connections, Evan Dawson's podcast. And we have a research program around that.

We have a research program around myotonic dystrophy, which is another condition, and then another, a third is in tango 2 deficiency, which is another gene.

So these are all kind of genetic things that have different flavors of how they present and different symptoms, but they all have a big impact on quality of life.

Emily: 00:05:11

Do you have like a pet project of those? Or are you not allowed to say?

Sam: 00:05:13

No, I mean, I. I really love them all. And part of the risk, I think, you know, I'm still pretty junior in my career, and you hear it a lot, like, "don't spread yourself too thin."

I'm sure you get this in your career. That's just the way my brain works is to have kind of lots of different offshoots. And in my mind, if everything is kind of moving forward, I'm happy.

If. If something weren't moving forward or I thought there was a dead end, I would probably cut it in a second. But that hasn't been the case, so. Yeah.

Emily: 00:05:43

Cool. I think I remember you saying you did humanities in your undergrad days. Do you think that has helped you as a doctor at all?

Sam: 00:05:50

Oof. Yeah, I. I mean, maybe. It's hard to say. I. I wish I could live at, like, multiple universe timelines, but I think so, you know, maybe, you know, when. If I was a comparative literature major, it definitely helped with my writing.

And I know you're a writer, and I feel like communication, it really can't be undervalued. And so things like academic papers or grants have a pretty good batting average with grants. And I really do attribute that to kind of writing, clearly.

Emily: 00:06:21

Yeah, I'm sure that's a huge piece of it. I know with, like, the big AI push lately, I feel like it. It drives me crazy.

Sam: 00:06:28

But let's not take a tangent into AI. we were talking about tangents before we started.

Emily: 00:06:32

But getting rid of the humanities, like any doctor that doesn't have some human background, like, I don't know, it can't be good.

Sam: 00:06:39

It can't be good. I actually wrote a short story about AI.

Emily: 00:06:43

Oh, really?

Sam: 00:06:43

in medicine. Just kind of picture like, a stark waiting room with nobody to check you in and a keypad where you, you know, get taken back and there's a voice and, you know, you pay extra to get 10 minutes with a real person. I think that's where health care is going. Yeah.

Emily: 00:06:59

Yeah. That's alarming. I wrote a story once about a combination Taco Bell/urgent care, and I think that is a real thing now.

Sam: 00:07:05

Okay, yeah, that sounds plausible.

Emily: 00:07:07

We're just heading in that unhinged direction. What are some of the things that you didn't really learn in med school that they don't teach that you had to pick up along the way?

Sam: 00:07:16

Hmm. I. It's hard to say. You know, we learn a lot in medical school, and most of it, you don't end up using, you know, the book knowledge of, you know, I'm not a nephrologist, I couldn't tell you how to manage sodium levels anymore. But I think they actually do a decent job as best they can. So medical school is kind of structured. The first two years are a lot of book learning.

The second two years are patient care. And so certainly when you move into your third year of medicine in medical school, you're thrown into it and you're actually interacting with real people. And it's funny to see the different skill sets sort of play out.

So some people really crush it on tests the first two years and then can't hold a conversation. And there's, you know, that rare group that's good at both, but I think they do a decent job just because you are exposed to the actual patients.

And there's been a lot of restructuring of medical education, some push to make it shorter.

I don't know if that's, you know, at the expense of some of that person contact time, but I think not to get into more electronics, but you know, medical records and documentation and things, they're all pulling people away from spending time with, with individual people. So I, I hope that isn't something that gets cut on the education side.

Emily: 00:08:34

So are you actually trained on like the bedside manner aspect and how to like empathize with families or you're kind of learning that when you get to practice it on the ground?

Sam: 00:08:42

it's a little both. So they actually have standardized patients. If you guys are looking for part time jobs, this is, I think would be really fun.

So you basically go in and you pretend that you have some ailment, right? And some hapless medical student has to figure out what that ailment is and write up your treatment plan.

But you're actually graded more on your interaction with patients. And so it's kind of an improv session. And I actually have a funny story when I was taking the test, which they've now eliminated.

They used to make you fly to like three cities and do these standardized assessments all day. Thing costs like a thousand dollars. And you're not supposed to touch the patients because they're actors and they get prodded all day.

And I kind of forgot that at one point and overdid it on, on this one maneuver where you have to jab something into somebody's foot and like scrape upwards. It's called Babinski reflex.

And this guy got really mad at me and I had to actually do a separate, an additional session at the end because they weren't able to score it.

Emily: 00:09:41

Oh, wow.

Sam: 00:09:42

It was...it got very awkward. He just shut down. So. So the key is, you know, never break character. That's a good message for life in general.

Emily: 00:09:52

File that away for future.

Sam: 00:09:53

Yeah.

Emily: 00:09:53

So when I think back to actually getting my son's diagnosis, I, I remember lots of parts of it very vividly. And I kind of remember even in the moment thinking, "man, this has to be a really hard job."

And it seems like you have to adjust a lot to the family in real time. And Tim and I probably had more knowledge than some families. Like, how do you learn how to adapt to each diagnosis and situation?

Sam: 00:10:16

When you're going into that, it's helpful at least if you can kind of walk in and first thing is figure out where the family's at. So, you know, in your case, you had. Had a. You have a brand new baby, which is disorienting. You're, you know, you haven't had sleep.

You just went through a big medical procedure yourself and figuring out, like, what information had been presented and getting a little bit of a sense of where people's knowledge base is, because you don't want to make things overly academic for people who might not remember much beyond high school biology. And you don't want to under, you know, describe the clinical aspect of things with people who might be at a higher understanding of those things.

So level setting, I think that's the, that's the one word answer, is figuring out where, where parents are coming from.

Emily: 00:11:05

And in situations like ours, we got to talk to you in person and get the news. Are you usually doing those diagnoses over the phone a lot of the time? Like, how does it typically play out?

Sam: 00:11:15

So again, I guess for context, for anybody listening, in your case, you know, this was something that was detected on newborn screening. So by kind of default, you've never met that person before.

So we're a center here where we have a lot of referrals from around the state for positive newborn screens. Most of the time. If we can have the patient here in person, that will happen in person a lot of the time.

If they're outside of our kind of catchment area or our reach, so to speak, we'll lean on our pediatricians in the community to at least facilitate that conversation and get that. Get that conversation started before they're referred here and we can have those conversations in person.

Emily: 00:11:58

That makes sense. We were just so blown away that, like, the news was so fresh and we were already there at the hospital, and then you were there, like moments later, seemingly. But I know that isn't super typical, it sounds like.

Sam: 00:12:09

I mean, I think it is. When we can. That's always the goal, is to be fast and.

Emily: 00:12:13

Yeah, well, we were there for the phototherapy already, so that was weird. Let's backtrack that and give some of the context of my son's story.

Sam: 00:12:20

Yeah, go ahead.

Emily: 00:12:21

Yeah, so my son was diagnosed with spinal muscular atrophy at five days old. Would you give us like a high level overview of what SMA is for listeners who aren't familiar with it?

Sam: 00:12:31

Yeah, so this is a little of a grizzly interpretation, but I kind of describe it as ALS for babies, which sounds absolutely horrible. So when we think about how we move, you know, we have muscle, we have nerves, and we have the cells, cell bodies that are attached to those nerves, and we call those things motor neurons. The motor neurons basically die off.

They're little cell bodies that live in the spinal cord and they die off at different rates, kind of varies by individual. The reason they die off is because they are missing a key protein called SMN and stands for survival motor neuron.

There's a gene that makes SMN, and people with SMA are missing or have kind of a chunk missing out of that gene most of the time, and they have two copies. So both copies have a misspelling or a chunk missing. So they're not able to make this special protein.

Now, the nuance here, not to get too academic about it, but there's a backup copy. And we talked about this at, you know, when the first time we met. There's a backup copy of this gene. It doesn't work quite as well as the main gene. And there are some treatments that we can do to kind of rev that backup gene up.

And then some people have one copy of that backup gene, some people have two copies of that backup gene, some people have five copies of that backup gene. And generally speaking, the more backup copies you have, the more you're going to make a little bit of this protein, which is going to be obviously helpful.

Emily: 00:14:05

And then the treatment options are somewhat abundant by muscular disease standards, right? So can you talk a little bit about how SMA can be treated now?

Sam: 00:14:16

Absolutely. So, you know, and it's important that we treat it, obviously. So I mentioned this is ALS for babies, but I didn't say when your motor neurons die off, obviously you get weakness in your limbs, your arms and your legs, but the breathing muscles can get affected. Right. So the main thing that used to honestly kill a lot of these patients was the respiratory issues.

So we try to get on it right away because, you know, time is muscle, that's what we say. And there are, there are now three FDA approved treatments, technically four. But two of them work on this backup copy to try to make that gene a little bit more functional. So you make a little bit more protein and then the other is a gene therapy.

So that basically involves taking the main gene that makes SMN protein, putting it into a little viral envelope and inserting trillions of these viral particles into the bloodstream in your newborn baby and hoping that it gets to where it needs to go. And that virus then spits that gene into the motor neurons that need it and now they can make that protein. It almost sounds like science fiction.

And I say there's a fourth now because they just did an FDA approval for the intrathecal or an injection into the spinal fluid for patients who are two years and older. So that the first gene therapy that your son received is approved for children under the age of two, ideally as soon as we can get it in. And then this new one is for older patients.

Emily: 00:15:45

And with that newer one, I haven't been able to wrap my head fully around it yet. How effective is it if the disease is relatively far progressed? Are you restoring any abilities or it's helping you maintain long term or...?

Sam: 00:15:58

mostly the latter. Right. So once these cells die, they are gone, there's no bringing them back.

But that being said, some of the patients in the trials have seen improvement, which is really cool. So about half or so seem more or less stable, a quarter actually improve and then a quarter get a little bit worse over time.

Emily: 00:16:19

That's gotta be rough to be in that last quarter.

Sam: 00:16:22

And I actually might have that flipped. It might be that half improve. after half improve, half stable or quarter stable. I'll look it up.

Emily: 00:16:30

Pretty amazing that like these sci fi, magical-seeming treatments are available now and it seems pretty rare that a lot of these diseases are able to be treated so effectively. Like is there anything in particular about SMA or advocacy groups that helped get this to come to fruition? Or is it like the disease itself and the research was...?

Sam: 00:16:47

Yeah, I think it's sort of a confluence of things. One, one, you have this obviously horrible disease. Two, it's rare, but it's not super rare. Right. It's not like there's 10 patients, there are several. Right. That we treat here and you know, some other patients at this point.

So it's rare, but it's not an ultra-rare disease, which is important from a, unfortunately from a business standpoint, when you're a pharmaceutical company trying to make a new therapy.

And then I think it was, it's bad, bad enough that they could get a trial done under this sort of compassionate use umbrella, which does speed up the process towards getting, getting drugs approved. And I agree, it is very science fiction. One thing that also made the gene therapy possible is that they used a very SMN gene. SMN1 is a very small gene.

And so we have a limit, limited number of base pairs or basically the size of our viral envelope is only so big, so we can't fit super big genes in there. And SMN1 was on the teenier side. So it was a really nice kind of proof of concept for gene therapy.

It was the first FDA approved gene therapy for kind of systemic use.

Emily: 00:18:00

I feel so lucky that my kid was able to get it. And it's not looming as large in our lives as it did when he was first diagnosed. But still, at least a few times a week, I'm like, wow, I can't believe that, you know, if he's dancing around the kitchen, I'm like, this is so incredible that he can do this.

Sam: 00:18:14

It is. And I appreciate the videos.

Emily: 00:18:17

He's the best dancer I've ever seen.

Sam: 00:18:19

Yeah.

Emily: 00:18:21

So thinking about giving a diagnosis, when you find out you have to go give someone a diagnosis, what is your reaction? Are you like, "oh God, I have to..." Do you have to like brace yourself? Do you do anything to mentally gear up for it?

Sam: 00:18:33

So I guess it depends on my comfort level with the diagnosis. And I'll be quite honest, some of the things we talked about. Ultra rare, right? Sometimes you're learning from families about diseases that you have not seen that much.

So sometimes, honestly there is a little bit of prep work that goes into, okay, what's the current, you know, state of treatment landscape for this, this condition that most neurologists might see five times or one time in their career, but something like sma, I think you kind of lean into the intellectualization a little bit and maybe that's a defense mechanism. Right. Certainly parents do that too. Some patient, some parents have different defense mechanisms.

But you'll kind of see that a lot in the conversation. And so that's kind of my go to defense mechanism is, you know, this is a really hard thing.

We can talk about the specifics, the genetics, the treatments, but then you kind of have to pause and say, I dumped a ton of information on you and check in regularly and does that make sense? So I do a lot of that through that conversation. And then kind of, like I said with the Level setting. There's something called teach back. Right.

So you kind of at points, you don't want to quiz them and make them feel uncomfortable, but say, can you give me your understanding of where things are at or what we're going to do next? Or what are your thoughts on our plan going forward? And can you give me your take on that?

And sometimes you hear that and you're like, whoa, that is not what we talked. Or not what I intended to talk about. So there's a lot of those little tools, and it's. It's different for every individual.

I think it's remaining a little bit nimble and humble, too. Right.

Emily: 00:20:14

That all makes sense. I think it's funny you mentioned intellectualizing, because it did feel like a very intellectual conversation, but I think you also did a good job empathizing, like, right up front. I think you mentioned having a newborn is really hard.

You just went through this huge experience, and I think you mentioned that you were a parent, and definitely later in the conversation you did, and it just felt like, oh, you understood how enormous becoming a parent is to begin with, and that felt good. I think I told you that we had a really bad experience with a pediatrician the day before.

So coming in off of that, where we had been yelled at and shamed and told we were bad parents when our kid was two days old, was, like, horrific. And then getting this rare disease diagnosis, and you were like, "hey, it's a lot to have a newborn." I was like, "I know it is."

Sam: 00:20:57

It really is. You guys are. I remember you being very stoic, at least in the moment, you know, so you held it together.

Emily: 00:21:05

I think I was a little, like. Twitchy, jittery? but, like...

Sam: 00:21:06

that's understandable.

Emily: 00:21:09

Yeah. And I. I had read a novel with a character with SMA that I think I mentioned in the moment. I just was only thinking, like, "is my whole life going to be caregiving now?"

And I don't think Tim had a good understanding of what SMA was actually like, but he broke down more after you left, so definitely a lot to process in the moment.

Sam: 00:21:27

Right. You also had. Your son had more of these backup copies. Right. So I think that does help, right. When you can go in there and say, "look, there's lots of different flavors of this condition, and the flavor that your son has is on the less severe side." So, you know, finding those little silver linings, I think is, is nice when you're delivering bad news, but then you also don't want to sugarcoat things too much and say you know, "this is a serious thing. We need to be on it. And if you're ready, we can talk about treatment options."

Emily: 00:21:57

So when you have, like, a really rough, intense workday, is there anything you do to take care of your mental health when you get home?

Sam: 00:22:04

This is gonna sound horrible. I feel like work for me is restorative and, like, it's a break from my home. Not that my home is bad, but, like, I definitely get more stressed out by, like, a messy house and, you know, so going to work and, like, leaning into my job is actually kind of a restorative thing for me. That's not to say that I don't like my family and I don't like exercising, but I don't tend to get that stressed out by work stuff, which is weird.

I don't know if that says anything about me or not, but sometimes, if there's a...if there's an awkward social situation or that stuff sometimes, maybe, or, you know, other professional things that have nothing to do with patient care, but patient care is great. I really do like it.

Emily: 00:22:49

That's awesome.

Sam: 00:22:50

Yeah.

Emily: 00:22:50

I have only been off of work for a few days at the end of the year now, but I already am. Like, I'm so bored and lost. I need to, like, do a little bit of work to ground myself at least. So I get that to some extent.

If you could change just three things about our health care system, what would you want to change?

Sam: 00:23:05

Not to betray any communist tendencies, but I think healthcare right now, you know, the fact that it's an industry is problematic by itself. I kind of look at it as a human right, that people deserve care, and I think it's just not that.

And there's a lot of different reasons why it's not that. It's not a Democrat, Republican thing. It's a money thing. And it's between insurance and pharmacy and pharmaceutical companies and these PBMs and the hospital systems and consolidation of doctors and doctors themselves, certainly. So it's a mix of things, and I would love it if we could rip it apart and start over. So I don't know if there's three things, but there's, there's a litany of things that I think we could do a better job at.

Emily: 00:23:51

ll have to tell you about our: 2026

Sam: 00:23:58

Oh, good.

Emily: 00:23:58

Yeah. Yeah. So we're happy right now, but who knows come June?

Sam: 00:24:02

But I think. I think those would be on my list, you know, changing the incentive structure a little bit to, you know, get us away from the stuff that maybe isn't delivering for people and more into things that do.

Emily: 00:24:15

And with a lot of the patients you work with who have different muscular diseases, disabilities, is there anything that folks can do to help advocate for disabled people in our current landscape?

Sam: 00:24:26

I think paying attention. Right. So policy decisions matter. When we're talking about things like cutting the Department of Education, a lot of that is impacting school resources for kids with disabilities. It's really all aspects of life. It's not just, you know, the medical side.

It's thinking about access to buildings, thinking about access to medications, and then we're in a US centric healthcare system. Right. But there's a lot of people around the world that have these same exact conditions that don't have gene therapy available to them. So it depends on how wide of a net you want to cast. But I think there's always room for advocacy.

Emily: 00:25:06

I remember searching gene therapy on TikTok for SMA and finding people across the world who couldn't afford it. And we're doing GoFundMes to try to get access to it. It's just heartbreaking.

Sam: 00:25:15

Yep.

Emily: 00:25:16

Well, I wish we were ending on a slightly happier note, but let's take a quick break and we'll talk about being a dad after that.

Sam: 00:25:23

Okay.

Emily: 00:26:14

So in the realm of other things that are a lot, you are a parent of three kids. So how old are they? What kind of stuff are they into lately?

Sam: 00:26:23

So lately, over winter break, it's been video games, but normally different activities, thankfully. So my son is 13, and then I have a younger son who's 7, and then a daughter in the middle who is 10.

Emily: 00:26:36

13! That's like a whole ass person!

Sam: 00:26:38

I know. He started middle school.

Emily: 00:26:40

Wow! What video games are they playing?

Sam: 00:26:42

Oh, gosh. Good question. So my daughter's playing Fabledom, My youngest is playing Kirby, and my oldest is playing Assassin's Creed. Questionable parenting decision.

Emily: 00:26:55

Isn't it, like, historical?

Sam: 00:26:56

It is. I didn't know that. It's actually kind of cool that they, like.

Emily: 00:26:59

I think they use 3D mapping from one of them for some, like, real world application. I don't remember the specifics.

Sam: 00:27:04

It looks actually pretty cool.

Emily: 00:27:06

Yeah.

Sam: 00:27:06

Like, this one is going around ancient Greece and there's historical characters, and

Emily: 00:27:11

Tim played that recently. Yeah.

Sam: 00:27:12

Okay. So I'm less of a terrible parent.

Emily: 00:27:14

Not terrible at all!

Sam: 00:27:15

As long as there's history in there.

Emily: 00:27:17

So your oldest, were you still in, like, residency? Fellowship? Where were you in your med school journey when he was born?

Sam: 00:27:23

I was in my PhD.

Emily: 00:27:24

Okay.

Sam: 00:27:25

Which is a good time to. It's better than med school or residency. So had my oldest in my PhD, finished medical school, moved from Syracuse to Ann Arbor, Michigan.

My wife was pregnant. We didn't know anybody in Ann Arbor, Michigan, and I was working 80 hours a week. And we had our second, and we didn't get divorced.

And then we had our third when I was still in residency and things had settled out a little bit. We had a, you know, social net and everything, but. Yeah. And now they're real people, like you said.

Emily: 00:27:55

That had to be rough, though, at the beginning, not knowing anyone to have a local support system.

Sam: 00:28:00

Yeah, it was rough. It's true.

Emily: 00:28:02

What do you remember about that?

Sam: 00:28:03

I was working a lot, and I remember my wife was like, "why did we move here?" And then. Because we were, we were in Syracuse, I think, for eight years, and, you know, you have friends and a community, and then you up and leave and don't know anybody. So it was tough.

And then, you know, when we left Ann Arbor, it was kind of the same thing all over again, because you make those connections with people.

Emily: 00:28:22

What were you expecting parenthood to be like before you had kids?

Sam: 00:28:27

I don't think I have a good answer for that. Right. Like, I. I can tell you after having a kid, and you can probably attest to this.

It's like all of your priorities sort of reset, and it sounds hokey, but, like, the stuff you were really focused on, you know, it's still important, but it's not as important.

You're thinking, I have this person, they're gonna let me take this person home, and, like, I don't have to, like, return it, you know, So I remember first kid. It's totally a big transformation. Right. And I think it's a good, good thing to have your priorities kind of restacked.

But I don't know if I had a good expectation. I think you just kind of wing it.

Emily: 00:29:06

Yeah. It's so hard to know what it's actually gonna be like.

Sam: 00:29:08

And you think, what were you expecting?

Emily: 00:29:11

Just some vague notion of, like, "oh, we have a kid now, we're a family, we're gonna take them to do fun things" or what. Like, you don't, you know, it's gonna be hard.

And everyone tells you it's like the hardest thing you'll ever do and that kind of thing, but you don't know how all consuming it is, especially at the beginning. Until you're in it. People tell you you're not gonna sleep. And you don't know what that feels like.

Sam: 00:29:31

It's a lot.

Emily: 00:29:32

It is indeed. Oh! Being a doctor, does that help at all? Or do you think. Do you get more anxious because, you know, all the medical things that could go wrong?

Sam: 00:29:42

I think I get a little less anxious some. In some ways, like, a lot of viral things. My wife and I have a joke. It's like, I'm always the one that says, "it's a virus. We're not going to do anything." You know, should we take him to the pediatrician? It's like it's a virus. No, I think maybe I do know some things about, like, oh, that's serious.

We should watch that. Or now it's time to go to the hospital. We haven't actually gone to the hospital, but I'm always ready. I'm ready.

Emily: 00:30:09

At least you know how to navigate it very well.

Sam: 00:30:11

Yeah, I think they're out of that, like, early age, where, like, they have respiratory things that can, you know, go south pretty quick.

Emily: 00:30:17

But I heard a baby at the library today with the worst cough ever, and I was like, oh, my God.

Sam: 00:30:22

Yeah.

Emily: 00:30:22

Stay away.

Sam: 00:30:23

Tis the season.

Emily: 00:30:24

How would you describe your parenting approach? Do you have, like, a particular parenting style?

Sam: 00:30:29

Bribes and threats. I think we talked about this in one of your clinic visits. I can't say I'm a better parent for being a doctor.

I wish I could be, especially as a pediatric neurologist. Yeah, every kid is their own person and try to be kind of cognizant of. Of that. And, you know, my youngest, hopefully he doesn't listen to this.

He's a different flavor from the, the other two. Right. And like, I'll give you an example. He has a hard time apologizing. Like, a very hard time apologizing. So even if it's an innocuous, like, he hits you accidentally walking by and, you know, like, "ow. That. That hurt." He'll be like, "Well, why were you in my way?" Right. It's a little sociopathic.

And so this is the first time I'm like, I need to read some books about how to deal with this. Right. Maybe we should get this kid to talk to a professional about feeling.

So we're doing a lot of role play now, like a fake kind of going back to our standardized patients. I'm like, the standardized person who is wronged, and. And I kind of have him, like, act out an apology. I will tell you if it works in a year.

Um, so far. So far not.

Emily: 00:31:36

But maybe he's just really argumentative, and he'll be like, a lawyer someday.

Sam: 00:31:40

I think he's going to be something a little esoteric or a little outside of the box. Certainly my box. We'll see.

Emily: 00:31:46

How are their personalities all different?

Sam: 00:31:48

I have the first, the oldest is very aloof. They're all pretty intelligent, but he is definitely, like, the most book smart and always kind of has been like, read really early, got his number, stuff done, and school is not that challenging. But he will be the one that, like, forgets his water bottle like, once a week or twice a week and just in his own head a lot, which is cool.

The middle kid is very empathetic, and we go to a Rochester city school where the classroom is integrated. So talking about, you know, special needs. Kids with special needs are in the same class as kids with, you know, kind of mainstream needs in terms of an educational context. And she's always been in that kind of merged classroom. So one classroom is all mainstream and one is this kind of merged model.

And yes, it's been really cool watching her just sort of grow up with that as the norm and really thrive in that environment. But she's also super smart and artistic and. Yeah. And then the younger one is. Has. Has feelings deep down inside.

And that's what we're working on right now. But super funny.

Emily: 00:32:57

So it does seem like they come out with these, like, preformed personalities.

Sam: 00:33:01

They really

Emily: 00:33:01

Their own little weird selves.

Sam: 00:33:03

They really do. And you're starting to see your son's personality.

Emily: 00:33:07

He's, like, very goofy. Like, he makes us laugh all the time. And he'll, like. He'll hide behind the shower curtain and pop out and go, boo. And he just likes to stick his tongue out when, like, we have a little Toothless figurine.

Sam: 00:33:19

Yeah.

Emily: 00:33:19

That's only available for diaper changes. And Toothless, his tongue is out. And he'll be like, every time he sees toothless, he just cracks us up.

Sam: 00:33:27

How old is he exactly now? You're still counting in months?

Emily: 00:33:29

Yeah, he's almost 19 months.

Sam: 00:33:30

19 months.

Emily: 00:33:31

I think we're gonna be like "one and a half, almost two," you know.

Sam: 00:33:34

Yeah.

Emily: 00:33:34

Give up on the months at this point.

Sam: 00:33:36

Yeah. I think two is when you. When you cut it off.

Emily: 00:33:38

Yeah. No, I know some people that are like, "he's 33 months." And it's like, "what?"

Sam: 00:33:42

Yeah, it's really fun when they start to turn into people.

Emily: 00:33:45

He does not have many words yet, but I'm sure they're all, like, brewing because he can understand so much and.

Sam: 00:33:50

Yeah.

Emily: 00:33:50

Yeah. I'll just start saying stuff to us soon.

Sam: 00:33:53

So I periodically quiz my kids what they want to be when they're grownups, and nobody said doctor. I feel like I don't work that much. But they say that I work too much, which makes me kind of sad.

I wonder if I had a different job that I was, like, out of the house because my wife works from home. Maybe that would be the same case. I don't know.

Emily: 00:34:13

What do they want to be right now?

Sam: 00:34:15

Engineer. And then what is my daughter's latest thing? I'd have to get back to you. She's talked about artists before in some capacity.

I wouldn't be surprised if she lands somewhere there. And honestly, with AI, I feel like return to the humanities is like, our, our best bet. And then the youngest wants to be an archaeologist.

Emily: 00:34:35

Oh, very cool.

Sam: 00:34:36

Yeah. So I approve of all those careers. Not that I have. You don't need my approval. Kids do what you want to do.

Emily: 00:34:41

Bothers me when people, like, project a career onto, like, a literal toddler. Like, my kid's really into trains right now, and people are like, oh, he's a future engineer.

And I'm like, no, he just likes to, like, push it down the little hill.

Sam: 00:34:52

Yeah, it's fun. Cause and effect. Yeah, right. Don't overthink it. There's a lot of time. Right. And I think most of us end up in weird. Never planned to be a child neurologist.

Emily: 00:35:02

Yeah, right.

Sam: 00:35:03

Weird little niches in life. Do you ever see these people with jobs and you're like, "that's a job? Huh?"

Emily: 00:35:09

There was one I learned about recently, but I already forgot what it was, but I was kind of shook. There are a lot of weird jobs out there.

Sam: 00:35:14

There really are.

Emily: 00:35:15

My friend is a birdkeeper at the Dallas Zoo, which, you know, wouldn't really think of that being a real job, but it is.

So do you have a lot of dad friends?

Sam: 00:35:24

Do I have a lot of dad friends? Yeah, I think I do have a lot of dad...I would say I have a modest amount of dad friends. There's a lot of neighborhood dad friends.

Emily: 00:35:34

Yeah. How do you make dad friends? Asking for a friend, AKA my husband.

Sam: 00:35:39

Yeah. It's not easy. Right. So sometimes, like, your kid will hit it off with another kid, and then you meet their parents and they're perfectly nice individuals, but there's no vibe at all. Like, is this what Tim is running into?

Emily: 00:35:55

I think he's pretty, like, insulated a lot of the time. So he doesn't have the energy to meet a lot of new dad friends. Or he does, and then they're both, like, really bad at texting.

Sam: 00:36:03

What is the child care situation?

Emily: 00:36:05

Very, very, very part time nanny. And then like splitting the child between us.

Sam: 00:36:10

Okay. So that's, that's one thing like getting the kid out of the house into a place with other kids. There's just more. Yeah, entropy. Right. And you're gonna collide with other parents more. And then there's the birthday parties, which those are in your future.

So I would say when I was that at that stage with like still in under two, I don't know that I had a lot of dad friends. So I don't think you should worry. I think his time is coming.

Emily: 00:36:34

That is encouraging.

Sam: 00:36:36

Yeah.

Emily: 00:36:36

How did you guys make friends when you got to Rochester?

Sam: 00:36:39

Guess just kind of stopping people in the street that have same age kids? I don't know.

Emily: 00:36:44

We do have a ton of friends in our neighborhood. Like we love our neighborhood. But then in the winter everyone's inside and we never see them. Just like, okay, now we're sad.

Sam: 00:36:51

I know. I hear that. I would say that of my kids friends, like I'm only close friends with a couple of dads. And it goes back to the vibes thing again.

Very nice people. Maybe I'm the problem. I'm the problem. Don't know. But winter's tough. I think the birthday parties, that's a phase. And then the school, you know, once they start doing hangouts and like overnights and stuff, that's a whole other thing.

Emily: 00:37:15

Yeah. Just gotta find the people you vibe with.

Sam: 00:37:18

Right.

Emily: 00:37:18

I have a story for you that is not for the podcast.

Sam: 00:37:21

Okay, I'm excited to hear it.

Emily: 00:37:22

So I know on your podcast I think you mentioned at one point that there are so many things to feel guilty about as a parent. What makes you feel guilty as a dad?

Sam: 00:37:30

I think there's like not a specific thing. It's more like, am I screwing this person up? That's, that's the real answer.

Emily: 00:37:37

I have a whole episode called "Trying not to traumatize our kids."

Sam: 00:37:41

Right? No. Well, I think the phrase I used probably because this is my one, one of my go to expressions is parenting is about minimizing guilt.

And I think there's going to be some inherent guilt because nobody's perfect. And if you're, if you think you're perfect, you're probably doing more damage to your kid that you don't know about. It's just living with your imperfections, trying to not be perfect.

But like I think being a human being and realizing you're maybe not always right and admitting when you're wrong and apologizing, you know, those are important things that it's hard to do as like the. What's the term? Like the superior of that relationship. Right. In the parent child relationship.

Emily: 00:38:22

We go to, like, a lot of libraries with him and some of the other parents I see are like, clearly trying to practice, like, every single gentle parenting tip they've seen on Instagram. And I'm like, that just seems exhausting. Like, I don't have it in me to do that all that.

Sam: 00:38:36

Are you familiar with the term? This was in the New York Times a few years ago. POOPCUP.

Emily: 00:38:41

No!

Sam: 00:38:41

Okay, so this is Parent of One Perfect Child Under Preschool age.

Emily: 00:38:45

Oh, gotcha. That sounds.

Sam: 00:38:47

So that's what those people are.

Emily: 00:38:48

Accurate.

Sam: 00:38:48

Yeah, yeah. And then when you have like another kid or, you know, you're like, "oh, okay, I don't have to do those kinds of things."

Emily: 00:38:55

Yeah. My kid was having a meltdown in the library because we had to leave, and another mom was like, trying to talk him down and I was like, you don't need to gentle parent someone else's kid, please. Let us just scream while I try to evacuate you.

Sam: 00:39:09

Yeah, different strokes.

Emily: 00:39:11

Yeah, yeah. To each their own, right?

What are some of the more stressful parts of being a parent for you with kids at this age, if work is so much less stressful?

Sam: 00:39:20

I, you know, we, we touched on AI. I do, like, it's like an existential dread that I have about how that's going to impact their lives and their careers and their happiness. I think it's already. This is. I don't want to be trite and like, get into this intergenerational, like when I was kid, you know, But I think there's something to it.

Like the way we're just digesting information feels problematic to me. I think the formula for a lot of our interactions, certainly digitally, has just gotten so refined that we're just like, dopamine hit, dopamine hit, dopamine hit. Click, click, click. And that's. That bothers me. So when I see them online too much, you know, we've limited social media. We haven't done any. No social media. My son doesn't have a phone still. He's in seventh grade. That's coming. Right. That's where I'm mostly nervous about. I think we've, we've had them pretty sheltered from the online world thus far. And then ironically, I think we're very open to them. Just like going out, exploring the neighborhood, riding your bike, and we're not. We don't find a lot of families that are cool with that. And so it's, again, it goes back to, like, different strokes. But for me, the risk isn't like riding your bike outside. It's what you're gonna find online.

Emily: 00:40:39

And, yeah, the chatbot that's gonna tell you to do something terrible to yourself.

Sam: 00:40:42

Yeah. Or just. Just suck you out from actual social interaction.

Emily: 00:40:47

We've got three kids down the street from us who play outside together all the time. And it's so cute. Like, they can run all the way around the block, and they're just always out with no parental supervision. And I'm like, "yeah, I like that. Good job!"

Sam: 00:40:58

You know, the risk aversion is definitely something that has come up with millennials having kids. I think I don't know what's behind that, but we're like, you know, when our son was six, I think we were like, "yeah, you can go to the playground. It's across the street. Two street crossings, and just be careful."

Emily: 00:41:14

But I think that's makes me nervous to think about. But he's way too little to have to worry about that.

Sam: 00:41:19

Yeah, you'll get there, too, but I think. I think we have to do those things. Risk is good.

Emily: 00:41:23

He likes to walk to the library now, and it's like his favorite thing. He has taken off for the library, and we've gotten there and they've been closed, and then he's very distressed.

Sam: 00:41:31

Yeah, I would be distressed, too.

Emily: 00:41:33

What are some of the parts of parenthood that bring you a lot of joy?

Sam: 00:41:36

It's kind of a constant. It's like you. You see your kid and you're like, "oh, that's a really cool kid." And I think the love of just being a parent. Right? Is if you can come back to that and whatever happened in your day, you know, I told you my work is restorative. But, like, if you have a tough day and you come home and you, like, tuck your kids in or, you know, do dinner with them, I think that's awesome.

I think it's been really fun to just watch them turn into good people. That's been our focus, too, is not. Not the academics or, like, the activities or the sports or whatever, but, like, the focus is, what.

What did you do? That was nice. Glad you're having a podcast about empathy, because to me, that was, you know, what we've really valued as parents. And to see our kids pull that off. Not always, but, you know, sometimes that makes me really proud.

Emily: 00:42:24

That's awesome. I have been a little worried about that. When I watch my son hit other children with a train when they try to take it from him at the library. But he is only one and a half, so hopefully that's coming a little later.

Sam: 00:42:34

Yeah, it is coming.

Emily: 00:42:35

Or now he's hitting the dogs with all of his toys.

Sam: 00:42:38

You guys just haven't peaked yet. Tim's going to make his dad friends. The train hitting is going to stop, sharing the train.

Emily: 00:42:43

I mean, it is a very fun era. It's just a very intense era with all those big toddler feelings. Yeah, yeah, right.

Sam: 00:42:50

And three is not that much better. I hate to say it.

Emily: 00:42:52

I hear three-nager is like worse than the terrible twos or whatever.

Sam: 00:42:56

Okay. Yeah, yeah, I think.

Emily: 00:42:57

Do you have a favorite age so far?

Sam: 00:42:59

I like 10. I've always liked 10. I think you're old enough. You're definitely still a kid and you're old enough to kind of get it.

So, like you can do cool stuff, you can read cool books, you can understand what they're about, but you haven't been really turned on to like the stuff that adulterates childhood, for lack of a better term. But like all that stuff is sort of not in your psyche yet. So I think 10 is cool. What do you hope, favorite age? Final answer.

Emily: 00:43:28

What do you hope your kids relationships are like with you when you're, when they're grown up?

Sam: 00:43:35

I mean, I hope they're okay. So this is gonna sound a little weird, Emily. I consider myself like everybody has an age, right? Like you're innate age. I feel like I'm a grandfather.

I feel like I'm like 75. Okay. Like not an old grandfather, but old enough.

So part of the reason we had three kids and not two was I want my kids to come back to my house with their kids. And I think that is going to be my peak.

Emily: 00:44:04

What if they don't have kids?!

Sam: 00:44:05

If they don't have kids, that's, that's cool. But like we're setting ourselves up mathematically.

Emily: 00:44:09

At least one of them.

Sam: 00:44:10

At least one. Yeah. Just bring a kid back. Adopt a kid, that's cool. Bring a kid, you know, bring a neighbor kid, that's fine. No, but I hope that they all. I kind of have that like hokey, like all come back and gather. Like that's my...

Emily: 00:44:23

gearing up for your grandpa era.

Sam: 00:44:25

Grandpa era. But yeah, obviously I hope I, you know, remain close with all of them.

Emily: 00:44:30

What was harder? Going from one to two kids or two to three?

Sam: 00:44:33

One to two.

Emily: 00:44:34

Yeah.

Sam: 00:44:35

A hundred percent. What am I telling you about that...I don't know if you're taking this information in as, like? what's different about 1 to 2 or 2 to 3 or?

Emily: 00:44:44

Or, like, those two things. Yeah.

Sam: 00:44:46

I think your mindset changes a lot from one to two. So we talked about the POOPCUP. So you're no longer a POOPCUP. Now you have a second kid, and your first kid is in the threes or twos or whatever, fours. And you're focused on your dynamic with your oldest kid and your dynamic with the youngest kid.

But now there's, like, this new dynamic between the two kids that you're kind of overseeing, and you also want to let that kind of be its own thing. And then I think there's like, the work, the physical work.

Emily: 00:45:15

Right.

Sam: 00:45:15

Like the diapers, and maybe you're out of the diaper phase and it comes back and, like, your sleep still isn't good. I don't know. I don't know how people have twins.

Emily: 00:45:25

Yeah.

Sam: 00:45:26

No, but I. I think that was definitely hard or harder. And then, you know, three. I don't know. Maybe it's just the margin, the mar. It's still harder, but, like, marginally, it's not as hard as adding that. I think that's the prevailing sentiment for most people.

Emily: 00:45:41

You're just a seasoned pro and whatever.

Sam: 00:45:43

Not a seasoned pro, but, like, you're, you're fine with your imperfections.

Emily: 00:45:46

Yeah. I met a mom at the library who had her 21 month old with her, and she was like, "oh, yeah, I just had twins two weeks ago." How are you here?!

Sam: 00:45:56

She looked good?

Emily: 00:45:57

She's...standing there.

Sam: 00:45:58

She didn't have big bags under her eyes?

There's no right number of kids to have, but we were like a two to three. And then turns out if you don't stop at two, you're gonna have three. So that's also sage advice.

Emily: 00:46:12

Well, do you have any more wisdom or even parenting hot takes you want to share before we wrap up?

Sam: 00:46:16

No. I'm, I'm, like, flattered that you asked me so many parenting questions because I don't consider myself, like, the prototype for fatherhood, but my kids are doing pretty well, so I guess maybe I should be, like, I should own it, you know.

Emily: 00:46:29

We're just telling stories of normal parents, too. I'm not trying to give anyone like, parenting

Sam: 00:46:34

I know.

Emily: 00:46:34

guidance on this podcast.

Sam: 00:46:35

I know. I know. I think just let your kids be their own people and let them be good people. I think. I think make them listen to this podcast. That would be my advice.

Emily: 00:46:46

Start in utero, and then they'll be really empathetic.

Sam: 00:46:48

We just need more good people. You don't need more like, shitheads in this country. Right.

Emily: 00:46:53

We'll fix it with podcasting, for sure.

Sam: 00:46:54

Yeah. Right.

Emily: 00:46:55

Well, thank you so much for coming on the show today, Sam.

Sam: 00:46:57

Yeah. This was so much fun. Thank you.

Narrator: 00:47:01

This has been a presentation of the Lunchador Podcast Network.