Ep 5: Surviving Thanksgiving (literally), Holiday Hot Takes, and an Idea-versary

[00:00:01] Alyssa Nutile Be honest. Do you want me to start? 

[00:00:03] Erica Stearns Sure. Yeah. 

[00:00:04] Alyssa Nutile I mean, I could do it since your. Your voice is a little scratchy today. 

[00:00:08] Erica Stearns Yeah, that’s what happens. 

[00:00:10] Alyssa Nutile I’m drinking Cambogia. And too much soup. Can’t drink. Can’t have soup that fast. Okay. 

[00:00:19] Erica Stearns This is this part state. And by the way. Welcome to Caffeinated Caregivers, where we show up rain or shine stuff here. Not stuffy, caffeinated. And sometimes I’m caffeinated to have coffee dates in conversations about all things related to drum roll, please. Caregiving that love. 

[00:00:50] Alyssa Nutile And no snow days here when I get snowed out. Erica, I hear you’re alive. 

[00:01:00] Erica Stearns I survived. Hello, everybody. For those of you who follow me on my personal Instagram page, it definitely dramatically let the world know that I was dying from the flu over Thanksgiving break. But I didn’t die. I miraculously survived. Just me and my husband got hit hard with flu A and B and took all measures possible to keep the kids from getting it. And we are just so grateful that somehow, thanks to Tamiflu, maybe I don’t know, it was just us that were affected. 

[00:01:33] Alyssa Nutile So for the record, when you say flu A and flu B, we’re not talking about back to back flus. We’re talking about concurrent flus. Two types of flu at the same time. 

[00:01:46] Erica Stearns Yeah, it was brutal. So brutal. And I’m so incredibly grateful for the fact that we had nursing support for the majority of the time that we were sick, except for two days. And it just so happened that the two days I was at the beginning of the week when Randy was sick, but I was fine. And then towards the middle of the week when Randy had started to feel a little bit better and I fell downhill and the illness pit. So it worked out well. And goodness, I just kept thinking through that entire time how how difficult it’s been in the past when we’ve been sick and trying to care for our kids and how like, you know, preventing cross-contamination is just like virtually impossible. So just cannot say it enough how much it helped, Mike just how grateful I am for nurses. 

[00:02:48] Alyssa Nutile So shout out to Nurse Kim again. 

[00:02:51] Erica Stearns Yes, Nurse Kent. 

[00:02:52] Alyssa Nutile I don’t know what the other one’s names are, but I know Nurse Kim. 

[00:02:55] Erica Stearns It would. Nurse Kim is a winner. We have Nurse Amelia, we have Nurse Carolyn. And they massed up and they Tamiflu up as well. And they entered our home and they picked up where we could not carry anymore. And it just made a big difference. So I rested. And I’m not going to lie. That’s hard to do for me. So by the end of it, I was definitely like getting jittery and ready to get out of bed and do stuff. But just so what, what a difference. 

[00:03:25] Alyssa Nutile The like, the thing about like parenting, the kind of parenting and caregiving we do is that like, we don’t get breaks a lot of times, right? Even though, like both you and I have nursing care, it’s not like we get nursing care and then we just like hang out and do whatever we want all day. We have to work and we have to, like, do all the other things. We have to do the stuff outside of the house. That’s really hard to do with our kids. And then the only time we get a break is when we’re dying, basically. And you don’t even it’s like I didn’t even get to read or like play video games or like eat candy, you know, like any of that stuff. Like, I didn’t get to relax. I had to, like, sleep to fight off this horrific illness. I didn’t even get to enjoy my resting time. 

[00:04:06] Erica Stearns Yeah, I mean, that is such a valid point. And I think that’s made such a huge difference, though, is that like I have experienced caregiving while ill and not being able to rest because you don’t have support, your kids might be get sick as well. I mean, there’s many times the illness has started with our kids and then we get it and we we recover faster than our kids. So we’re still having to do caregiving, waking up constantly throughout the night and just not getting that. RA So it does make such a big difference to be able to rest. It’s probably one of the few times that I have like actually rested and not felt guilty about it. Like didn’t have any sense of mom guilt. But I will tell you, I also want to give a special shout out to my husband because he saw me getting really restless towards the end of it and I was like, I just need something to do that doesn’t make I didn’t want to do research. I didn’t want to like I didn’t want to like, really use a lot of brain juices. But I. I was bored. Yeah. So he actually, he brought up the TV. We don’t typically. Have a TV in our room, but he brought up a big TV and set up the gaming console because I do enjoy gaming everybody. I’m a gamer when I have the time. And so I spent like six hours when I couldn’t sleep playing Assassin’s Creed and just feeling really good about traveling through Egypt and like feeling like I was accomplishing something well, literally stayed in bed and in the grossest version of myself possible. It was really glorious, honestly. 

[00:05:41] Alyssa Nutile Okay, we’re going to wrap back around to this conversation. The illness and holiday and all of that. 

[00:05:46] Erica Stearns We’re well, but Alissa, I have to say, you traveled last week and I don’t know. I mean, what I experienced was brutal and exhausting. But thinking about traveling during the holidays also sounds really exhausting. So you’re here and you survived and you guys are all healthy afterwards. Everyone’s good. 

[00:06:09] Alyssa Nutile And it sounds like a knock on. 

[00:06:11] Erica Stearns Right? 

[00:06:12] Alyssa Nutile Because we are, as far as I can tell, all healthy and whole and whatever. 

[00:06:19] Erica Stearns Mental health is good after travel. 

[00:06:21] Alyssa Nutile Too. I mean, we’re so used to it. Yeah, we just do it. And both of the kids, even Gemma, like Gemma loves car rides. I don’t kind of like the sensory thing, like she’s got her brother back there who, like, sings to her. Like, half the time the car is, like, vibrating the whole time, which she absolutely loves. There’s stuff to look at her well, like CVI brain, like doesn’t see all of it, but there’s a lot of like, color and light changes and she loves that. 

[00:06:45] Erica Stearns So that’s awesome. 

[00:06:47] Alyssa Nutile Yeah. So I don’t know, like she’s a really good traveler. And again, if you have a tube fed kid, that is also really easy when you’re traveling in a car because you just like hook them up. That is around all day and like they’re good to go. So, you know, they don’t get hungry like she wears a diaper. We don’t have to stop for her to go to the bathroom and stuff a ton of times. Yeah, it’s really it’s not super hard to travel with her, you know, because we’re comfortable doing it. We’ve done it for a long time. And also the family that we travel to, I definitely know that it’s not the norm, but we were very lucky to have when we travel. My mother in law can help. My sister in law helps out with drama. My other sister in law was so sick when we were there and she’s usually like, she’s always like, involved and like helpful too. But, you know, obviously this time we were like, Stay away. 

[00:07:39] Erica Stearns Yeah, yeah. 

[00:07:40] Alyssa Nutile But she was sick. Nobody else got sick as far as I know. So again, like I said, we’ll see. But as of right now, it’s good. And I mean, yesterday, trying to get back into the swing of things was rough. But like we have such a system now that it helps the kids are older and the actual like holidays there are relatively stressful because like we do have help. My daughter is really well accommodated like where we are, so it just makes a huge difference. And I think again, when we wrap around this holiday talk here in a few minutes, some of this can help to like make a really good holiday. You know, we go places where I like it is a little bit more stressful just because of like the hustle and bustle for us. Like Thanksgiving isn’t like that. Like we go to my in-laws house for a week. We pretty much don’t leave their house for a week. The boys go hunting. The rest of us like just stay in the house and do whatever we want with the kids and. 

[00:08:39] Erica Stearns Your park. 

[00:08:39] Alyssa Nutile It. It’s nice. It’s actually like the one time that I get to rest. That’s kind of required resting just because, like, there’s not a ton to do or a ton of places to go in rural Michigan. And I wasn’t sick this year, so I got to actually enjoy it, which was really nice. 

[00:08:56] Erica Stearns Oh, I’m so happy about you. That’s great. You look great. Yet following you, I think you really work like if maybe fold your cup a little bit. 

[00:09:05] Alyssa Nutile You know what really happened is that I got eight hours of sleep every night that I was there. And do you know when the last time was that? I got eight hours of sleep every night. 

[00:09:15] Erica Stearns Girl. 

[00:09:16] Alyssa Nutile Probably the last time I was there last Thanksgiving. Okay. Wow. And that’s just like. I know that. Like, I’m lucky. Yeah, I wouldn’t be able to do that if I didn’t have family that was so good and helpful, like with my daughter and like, they’ll just get her out of bed in the morning, like, before I’m even out because I usually stay up late. Like, I’m just not a person who can fall asleep early. 

[00:09:38] Erica Stearns Yeah. 

[00:09:39] Alyssa Nutile So before I’m even awake, like, they’ll get her out of bed and, like, do her meds and, like, start her feeding and, like, change her diapers off. Right? Like, I don’t have to worry about, like, anything and that. And that’s, I think, really rare, even like, grandparents, aunts and uncles and stuff like that. 

[00:09:54] Erica Stearns So that is not the case in my situation and that that is definitely something to be cherished. That’s awesome. 

[00:10:02] Alyssa Nutile For sure. Yeah. Like we don’t live near any family, but we do get a lot of help from them when we do get to see them. And that’s that’s huge. Okay. But Erica. Before we get into the holidays. What are you drinking today? 

[00:10:16] Erica Stearns Okay. I’ve already had two cups of coffee and I’m working on a cup of tea because I need all the help I can get right now. I’m still pushing through the tail end of this grossness. So for those of you listening. My voice is a little rough today, but it’s here. And I’m here. I want to give a special shout out to our friend Katie from a very rare adventure who gently gave me some strong arming over my tea preferences and how I drink my tea. For those of you who don’t know, I Katie resides in Switzerland and she is just a classy gal, so she was somewhat appalled that I drink English breakfasts with all women. And she corrected me. She informed me I need to do it with a cream. And I want to report that that is definitely a better way of enjoying English Breakfast or Earl Gray. But today I’m drinking one of my favorites. It is called turmeric bliss. And it is. It’s a passionfruit, turmeric tea. And I’m personally sour. I can tell she is like she’s tuning part of this out right now at this point. 

[00:11:32] Alyssa Nutile I am a little bit yeah. I just the tea I came out with the tea but everybody who listens to this is enjoying tea is going to really appreciate it. 

[00:11:40] Erica Stearns We have to have one here. In this conversation. You can connect with the tea drinkers. There’s the dog is joining us today too. I was a what are you drinking? What’s fueling you today? 

[00:11:54] Alyssa Nutile Well, right now I am drinking Cambogia again. It’s the same kind last time. It’s the kind that they sell it all day, so. 

[00:12:00] Erica Stearns Oh yeah. 

[00:12:01] Alyssa Nutile And then this morning I had my cold brew that I made in the fridge with all the French vanilla, but. 

[00:12:09] Erica Stearns Hmm. 

[00:12:09] Alyssa Nutile I haven’t been using, like, creamer so much, like I’ve been using like blends and things like that, but I haven’t been using like, actual, like creamer. And I got coffee made frosted gingerbread creamer. 

[00:12:22] Erica Stearns Oh, nice. 

[00:12:23] Alyssa Nutile And I have been putting two spoonfuls of that in my cup of cold brew French vanilla. And let me tell you, it’s very festive. 

[00:12:31] Erica Stearns Nice. 

[00:12:32] Alyssa Nutile I don’t love the, like, peppermint and coffee like I used to like it. Now it’s just like, I don’t know if I want a peppermint or eat a peppermint. I don’t need it to be like in my coffee. 

[00:12:40] Erica Stearns Like a mocha latte, like a peppermint loco. That’s what I mean to say. 

[00:12:45] Alyssa Nutile I mean, sometimes. But I have to, like, be in the mood for it. It’s kind of like that. I like mint chocolate chip ice cream personally. But you know how some people are like, I don’t know why you want your ice cream to taste like toothpaste. It’s like sort of that vibe a little bit. I got it. Yeah. So I like the, the like, gingerbread mix has been really good and it’s frosted, so it’s got like, just like a little bit of sweetness in there is really nice. 

[00:13:07] Erica Stearns Mm. Yeah. Hey, over. Just like to gracefully pivot to the other subject. That’s really important. Happy one year idea versus three happy adversaries. I’m so grateful for you and thank you to our listeners, to our social media friends. One year ago, Alyssa and I began texting about the lack of nursing and how frustrating that can be and how challenging that is for caregivers. And we wanted to make a podcast. And fast forward to now here we are actually recording. We’ve got this amazing caregiver community that we’ve had the incredible opportunity to connect with, and I’m just like this episode right now that we’re about to record would not be happening if like a year ago we did not start venting to each other about this stuff as well. It’s just wild. 

[00:14:09] Alyssa Nutile It is wild. I was trying to find the original posts that we connected over like reconnected again, but it was too much scrolling, so I gave up after a while. But it was it definitely started with like nursing and I remember it starting like I had posted something about how like without nursing, I wouldn’t have any semblance of a career anymore. And like, that’s one of those, like kind of overlooked things when it comes to like whether or not people feel like they, quote unquote, deserve to like, have nursing care or like needed or like whatever. And it’s like, well, how much did you have to give up to be able to take care of like your medically complex kid, basically. And like, why is that not reason enough to need more support? And obviously that concept has grown quite a bit since we started, but that was like the conversation I think that got this ball rolling a year ago. 

[00:15:07] Erica Stearns Yeah, I mean, it resonates with a lot of people and especially resonated. With me at the time because we we had just come off of a long battle of not having any nursing support. And the long term impact of that, I think the message I sent to you is something along the lines of I am still playing catch up. Even though we’ve had a nurse for about four months, I’m still playing catch up on all the things that I but just like piled up that I didn’t get to address for those long period, that we didn’t have nursing support and I was trying to continue working. And yeah, I mean, it’s come a long way. This thing grew legs that we, we didn’t even imagine at the time. I’ll never forget there was a lot of brainstorming. I remember at the beginning we were like comparing the experience to like an onion theory. Remember that like all. 

[00:16:01] Alyssa Nutile The layers of. 

[00:16:02] Erica Stearns Like being a medically complex caregiver. And there was a whole Onion concept for a long time that I was reminded of while I was sick and played on my iPad because I had done like a drawing of an onion. 

[00:16:15] Alyssa Nutile So yeah, it was that idea that like every time you dig into one topic, you find yourself peeling back a layer into like, one more thing, one more thing underneath this. 

[00:16:25] Erica Stearns All of it that encompasses the thing which is being a caregiver. So yeah, it’s exciting. I’m just really happy to be here. And a lot of times what people don’t see is that this is a lot of work behind the scenes to maintain, to dedicate ourselves to. But every time we get interaction, every time we get a message, every time someone lets us know that they feel seen, supported or validated, it’s really reassuring. And it really does remind me that, like, this is what I wanted to do with some of my spare time was like, connect and build a community. And I’m just excited that we are in a position where we’re able to do that. We may not always be so just grateful for that right now. Okay, I’m done gushing. Sorry. 

[00:17:15] Alyssa Nutile Okay. Well, on the kind of like behind the scenes stuff, we do need to take a second to do a little bit of housekeeping. 

[00:17:24] Erica Stearns We’ve been busy. 

[00:17:26] Alyssa Nutile We’ve been so busy. We’ve been doing all the things. Part of me feels bad sometimes because, like, I feel like three times a week I’m sending you a whole bunch of voice messages in a row and I’m like, Erica, I have had a revelation just constantly. I’m regularly. 

[00:17:41] Erica Stearns You’re getting the same thing from me too. 

[00:17:44] Alyssa Nutile Yeah, that’s true. That’s true. Yeah. So there’s a lot of ideas, but only so much time that both of us have. But we’re trying to implement as much as we can. We’re also trying to make a place that’s just like a little bit more permanent for all of this. Really interesting topics and content and stuff that’s coming up and the conversations that we’re having with you. And even just like with the stuff that we’re creating from your ideas and mix them with our ideas and all that. So all of that to say that we do have a website, the website does have a blog, the blog is being added to regularly. Right now we’ve got two stories from you and me and like our caregiver origin stories, which are pretty fun, I think, and this is separate from the podcast, I should say. And then we also have a couple of sort of educational posts. We have a post about why we like the word caregiver and like why we use that all the time. We have a post about what it means to be disability informed. We also, as of yesterday, have a collection of tube feeding memes that I just put up last night because we were trying to find a permanent home for our memes instead of them just disappearing forever into Instagram. We are always going to be posting them on Instagram. Guys like, don’t worry about that going away. But we also want to put them on our website here and there. So like they actually have a place to be found by people who are not on Instagram because both of us are there. I’m pretty much exclusively there. I’m not really anywhere else on the Internet, but lots of caregivers are lots of other places. So we’re just trying to have another hub that people who aren’t just in our little social media circles can find the stuff that we’re doing. And related to that, especially this time of year when it’s very busy on the Internet and on social media and Walmart’s putting out ads rehashing mean girls and bringing back the whole cast Decades later, you may possibly miss some of the content that we put out on Instagram and other places. And if you would like to not do that, you can sign up for our email list. We do not send out many emails. We send maybe 1 or 2 a week because we don’t have that much time again. But they are interesting. They all first of all have a meme in them. Whether or not that emails about memes, it will have a meme in it because that’s what we’re about. But it’ll just be like a little roundup of the stuff that we’ve been working on lately, stuff that we have been talking a. Out on Instagram stuff that’s been published on our website. If we have a new podcast episode out. So hopefully things that will just bring a little levity and joy to your inbox. In the midst of all of this craziness. 

[00:20:26] Erica Stearns It’s a little bit like insider access, too. I also liked, you know, the thing about our blog with having a placeholder for the means, you had said something about creating a buzz feed for caregivers. 

[00:20:38] Alyssa Nutile BuzzFeed for Caregivers. 

[00:20:40] Erica Stearns I had Heart for my Eyes when I read that because that is something that’s missing. I feel like last night we did a little dive into Reddit and couldn’t really even find a lot of stuff about pediatric caregivers there. It was interesting to see where we are not showing up as a community when we talk about having content on our website. Not only do we want to create the space for you guys who are listening, who are caregivers, who are part of our community, but we also want to make a presence in the world so people know about our community. Bring attention to the fact that we exist. We’re just like everybody else, and that anybody can become a caregiver at any point in time or may even be someone who is a recipient of care themselves at some point, temporarily or permanently. So just reminding society that we exist, we’re here and we like to have fun, too. Okay. 

[00:21:33] Alyssa Nutile On the Having Fun topic. So last week on Instagram, I told you guys that we weren’t going to record a podcast episode about surviving the holidays and I am a liar because I don’t know, things happened. But we did gather a bunch of responses about how you guys are surviving the holidays, what your ideas are for surviving the holidays, and we’re working on a blog post. We did some polling for you guys about how you feel about the holidays. We’re going to share that in the blog post and we’re going to share all of the best survival tips a lot from this community and then also some just out of our little brains. 

[00:22:15] Erica Stearns Well, you didn’t lie. You didn’t lie to them because today we’re not talking about our survival tips to the community. We’re sharing the survival tips that people gave us for the holidays. 

[00:22:28] Alyssa Nutile So that’s true. And we have to start with one that may be fun, maybe isn’t fun, but didn’t show up more than once in our responses. And that is when I asked you folks how you survive the holidays. Your best tip for surviving the holidays. More than one person responded with one word. What was that one word? 

[00:22:53] Erica Stearns Alcohol. Dull by with booze. 

[00:22:58] Alyssa Nutile Presumably like wine, beer, stronger spirits and a flask that you’re, like, sneaking under the holiday table or going in a bathroom when you’re overwhelmed? I don’t know. I don’t know what all the contacts are. But more than one person responded with that, which I just had to laugh out loud. Not because you’re wrong. It’s just like. 

[00:23:19] Erica Stearns We’re not laughing at you. We are. 

[00:23:21] Alyssa Nutile Laughing. No, we’re not laughing at you. Better. We’re going to cope. Similarly this holiday. It’s just I think it does speak to the state of affairs for caregivers that like this is one of the best tools that we have to get through. 

[00:23:33] Erica Stearns The holidays deeply resonated with that. And it was great to actually see that multiple people were not afraid to share that. That’s like something that they look forward to, that they enjoy about this or that helps them get through it. We’re not making any recommendations, the community to do any one thing. But hey, what soothes you? 

[00:23:54] Alyssa Nutile Yeah, I mean, please drink responsibly. 

[00:23:57] Erica Stearns In moderation, right? 

[00:23:59] Alyssa Nutile Yes, absolutely. Moderation, all of that. Like I am not advocating or condoning excessive drinking during the holidays. But listen, if a little bit of wine or a cocktail or two is what’s going to make the holidays bearable and bring your stress level down even temporarily, I will not begrudge all of that for even a second. So if that’s what helps, go for it. 

[00:24:25] Erica Stearns Do you have an adult beverage of choice during this time of year? 

[00:24:29] Alyssa Nutile My thing is just like a really good sour beer like any time of year, basically that’s my favorite thing to drink. So sometimes they get it for the holidays, sometimes they don’t. But if I had to pick something like that would be the thing that I picked. 

[00:24:43] Erica Stearns Yeah, I’d have to agree with that. Although I will say there’s something this time of year about a good quality hot toddy with like all the clove and the fresh lemon and the honey or however you like to dress it up. I know some people do a cinnamon stick. Gosh, maybe I should have a hot toddy later today. That might help my throat. 

[00:25:07] Alyssa Nutile My poor sister in law who was sick all Thanksgiving break, had a terrible. Terrible sore throat and she doesn’t tend to like drink a lot anyway. But she was having a hot toddy like every night because it was the only thing that was making her throat feel better after all kinds of Tylenol and ibuprofen and whatever. Like that was the thing that worked. So yeah, maybe try it as you’re recovering from the flu. Speaking of family, we did have some other responses and I should say our holiday survival tips. I think most of them are like emotional and mental survival tips. Right? Because like I, I think we can just only do so much about like the physical reality that we live in. Like, our kids have certain needs. Our families have certain limitations because of that. Like, there’s some tangible realities that we can’t really get around, right? But we can try to protect our mental health and emotional wellbeing as best as we can. So I would say that that’s like pretty much the premise of our holiday survival Guide. And on that note, this was just like we also had a couple of different comments about when it comes to the holidays, particularly when you’re seeing family or sometimes like those random weird old family friends that like your grandma brings, you know, to the night before Thanksgiving and is like, Do you remember Uncle Gerald? He used to hang around where you were still in diapers, Whatever. I don’t know why I did that voice, but I. I get people that show up like that. 

[00:26:38] Erica Stearns Or maybe the judgy, upper crust outlier in-laws. There’s a lot of types and a family. I’m just saying. 

[00:26:46] Alyssa Nutile People who may or may not be super close to you, who may or may not be very sensitive or aware of the realities of your life and the things that they say to you and about you and about your children. Highlight that very, very clearly. And when that happens, you have a couple of options. You have the one that I often pick, and this is why I picked this comment to discuss today, because this is the thing I’m bad at where you can choose to like look them in the eye and argue with them about the stupid thing that I just said. And I want to be clear that like, if you choose that route, you’re not wrong per se. Like you’re within your rights to do that. Mm hmm. Is it an emotionally exhausting conversation to get into during the Christmas holiday, though? It is. It really is. So if you’re a person who has, like, self-control and self composure and can do this much better than I can, I do think that there is some validity in just giving them a funny look. Keeping your mouth shut and like walking away. And not because they’re right and not because they don’t deserve to be called out, but just because you are protecting your emotional peace in this moment. Because sometimes it’s just not worth the engagement. 

[00:28:07] Erica Stearns Self-preservation, baby. I honestly have not experienced that. So reading some of those comments from people, it really kind of broke my heart For families who are out there dealing with unfortunate encounters with people that they like gather with on the holidays. I think that we have traditionally kept our experiences and our outings so small and really just like with a media family that know our situation pretty well. So we’ve never experienced that. So my heart goes out to those of you who are experiencing that, and that would really put a damper on the experience if that’s what’s happening out there. So for those of you who have to like go into the holidays preparing emotionally for those encounters, good gravy, I am sorry. That is the experience you have. 

[00:28:59] Alyssa Nutile I think too, it’s just one of those things where, like you do have permission to not engage, like you’re not required to educate everyone around you during the holiday season. And I’ll say, like, usually that’s not an experience that I have with our close family either. But it has come up like here and there with, again, like family acquaintances kind of just sort of like old friends that you run into during the holidays. And I don’t know, you can take that on if you want to and if you feel like you have the bandwidth for that. But you don’t have to. Are you going to see these people again if you do see them again? Are they going to remember this conversation? Is this the thing that they’re going to like, take forward into their life? Maybe. But it doesn’t have to be your job to educate them on that kind of stuff. 

[00:29:42] Erica Stearns I agree. What’s another one that you liked? 

[00:29:45] Alyssa Nutile Also the other one I liked that really stuck out to me because we do this sometimes till again, not so much for my family, but Jamila sometimes enjoys her space a little bit. So we had a couple of different people from the community also mention that during the holidays, particularly gatherings where you might not be home or you’re at someone else’s house, just both. For you. Go see if you can ask if they have an extra bedroom or like a quiet space in their house. Or honestly, you could probably even escape to your car if you’re really desperate. But just a space that you could go that if either you or your kid or both of you together are getting very overwhelmed. Maybe you have like a more sensitive medical need that you don’t want to deal with in front of a whole bunch of people. Just ask them if there’s a space that you can go that would be like quieter in kind of a way that you could escape to finding out where those spaces are and if you can access them ahead of time, can like take a lot of pressure off. If you find yourself in one of those really overwhelming moments where like, you just cannot be around a dozen people who are trying to figure out what’s happening when your kids due to fill out or whatever. 

[00:30:59] Erica Stearns Yeah, when you’re overstimulated, I mean, because the holidays can be so overstimulating. What excited me the most about the holidays as a kid was how overstimulated it is. But I recognize that my kids, that doesn’t excite them, that overwhelms them. So having a plan for situations like those is really helpful. That’s a good one. 

[00:31:21] Alyssa Nutile What was one of your favorites? 

[00:31:25] Erica Stearns Well, between the two of us, as well as I am the lazier parent and listen, I wear that badge with honor because there was a time when I’ll just, like, put it out there. The first time we were approaching the holidays with our daughter Margo, when it was just her before we had crashed, I guess we were in the hospital. I mean, we didn’t even know if we’d get out of the hospital by Christmas. And fortunately we did. But, you know, medically speaking, she was still so very fragile getting over an illness. And so we we’ve just kind of learned that, like staying home and like doing things our own way so that we can just like, avoid the hospital is the main prerogative for us. And the reason I say I sometimes feel lazy is like I see a lot of people in our community who go above and beyond to create these, like, super memorable experiences for their kids. And I’m going to be honest, I felt obligated to do that in the first year of this journey as a caregiver. One because I thought based on what the doctors told us, we would not have our daughter past a year old. So we wanted to like make memories when we could. But then it always and inevitably led to her becoming ill and in the hospital. And after seeing a pattern of that. Finally, I just was like, That’s not worth it. So staying home, we saw that brought up by multiple people. And what I actually appreciated about the way people submitted staying home is that was it like overly sad or like, Oh, no, we stay home. It was like, now we stay home. Like we host. People can come to us. They want to see us. If they want us to be a part of it, they got to come here. But we are staying home and like, they were really proud of it and I. I feel proud of it too. Another thing I saw just overall, like a mass submission we had was adjusting expectations for the holidays. You’ve done it. I’ve done it. It doesn’t matter if you’re staying home, you’re traveling, you’re out there making all the memories. In all of those situations. As a caregiver, we have to learn to adjust our expectations however it is that we’re choosing to celebrate. We prepare for the worst, but we hope for the best. That’s like my life motto as a caregiver. So even when you’re at home, you have to do that too. If you’re going to have people over like we have places in our own home where the kids can just be alone and not around a bunch of people. We have masks, we have hand sanitizers, we do all the things. But I will tell you, I’m nervous because we are going to travel for Christmas to see my family in Kansas. And I I’m looking forward to creating some memories. But this this is not how we’ve traditionally done things. So I’m a little I’m a little nervous. 

[00:34:24] Alyssa Nutile Okay. I would like to point out that I don’t think it’s laziness and I do not think that, you know, the lazier parents out of the two of us. 

[00:34:32] Erica Stearns I know. I be very self-deprecating right out. Sorry about that. 

[00:34:36] Alyssa Nutile Yeah. Lazier when? Like lazier because, like, you don’t want to travel. But I also feel like I definitely. So I have one non-disabled child and one disabled child, and I absolutely use my non-disabled child as like, Oh, Gemma needs those. Can you go get her stuff for her? Can you go get a refreshing neighbor from the other room? My legs are tired, so all I’ll say about that is laziness is in the eye of the beholder because I definitely feel lazy all the time. 

[00:35:07] Erica Stearns That’s a good point. I’m sorry. I should not have. Suddenly the I just. 

[00:35:12] Alyssa Nutile Well, and Gemma likes to travel. And that’s a thing, too. Like, if she didn’t like to travel, we would not travel the way that we do because it would just be really hard. It would be hard for her. She wouldn’t be happy. Like we wouldn’t be happy because like, she would be miserable, all of us. So kind of on that, like changing and adjusting expectations thing. Like a lot of it’s just going to be like, What does your kid like and what does your family like and why it feels feasible for you. It doesn’t have to look like any particular thing. And now, Erica, your next point. I think that’s like it goes right in, right? 

[00:35:44] Erica Stearns Yeah. I mean, I’m just going to go out and say it. This was obviously a theme that kept showing up in the responses that we got. But someone just said at point blank, which is keep it simple. Focus on what brings you and your child joy. And I’ve learned that like we we do like to laugh it up. We like to be home. We like things to move slow in our house. I imagined waking up early and, like, ripping open Christmas presents like I did as a kid. My kids don’t particularly enjoy that. We have a totally different routine Christmas morning and that that’s fine. It has taken us a few attempts to figure that out, and I think that’s just what I want to remind those of you who are at the beginning of this experience, this journey. As a caregiver, you’re going to like adjust and evolve and how you approach these holidays this time of the year and what may work for you now might not work in five years. So, you know, just kind of always going back to what brings you and your child or children. Joy, That looks different for every family for me. What do children with disabilities that means we do stay home. They are very different personalities. So Margo does not like to travel. She does not like to be around people. Craddick is loves it. We do a little bit of both. We make it so that we’re able to see some people that they’re familiar with and crowd, I guess, gets the socialization and Margo, who gets to be in her safe space. But for you, I mean, you mentioned earlier that you have a disabled and a non-disabled child. And I think about that a lot, like how would this look different if we had a non-disabled child? And I think I think you’d be hard to find a balance. Let’s just say that. 

[00:37:29] Alyssa Nutile It is interesting, too, because you have two disabled children who have the exact same medical condition with very, very different personalities. Right? Yeah. And I have to enter abled siblings with in a lot of ways they are very, very similar in like strength of personality and things that they enjoy and very dramatic means in which they express themselves. So on one hand, like that is helpful because like a lot of the stuff that my son likes, my daughter also enjoys, particularly from like a socialization aspect, like they both really like to be around other kids. They both really like to be around their extended family and stuff like that. They’re both good travelers. They’re both so in the right circumstances, as long as you’re not making them do anything that they don’t want to do, like brush their teeth or put shoes on, you know, kid stuff. So that helps. There is a certain aspect of like if they weren’t so interested in it and my son in particular, Harry, if he wasn’t so interested in certain things like would we put as much? I don’t want to say pressure, but would we make it such a priority to do some of the things that we do? And I don’t know, truthfully, maybe not, or maybe not as often just because it is hard. I did an episode with Madeleine from The Rare Wife. I think it’s episode 125. We’ll get in the outs. But I did an episode with her about traveling and basically like how you can travel with disabled children and things like that. And there are a lot of ways to do it and we do it all the time, but it doesn’t mean it’s easy. And even if you are well-versed in it, it doesn’t mean it’s easy every time. Right. And even when it goes well, like you worry because there are things that like, could go wrong. There’s all these little facets, right? So I don’t know that we would prioritize it quite the same way without him. Like I think we would still do it because again, she enjoys it, but it is different. 

[00:39:39] Erica Stearns Yeah. And I mean, travel for us is a lot of work. I mean the amount of equipment you talked about the feeding, but I just think about like all the respiratory stuff that we have to take there just to like maintain their routine and like that’s the are they maintaining The routine we’ve learned is just like such a key element of keeping our kids healthy and happy. So doing that away from the. Home is just so much more challenging. And quite frankly, it is not a challenge. I’m up for more than like once a year. That brings me joy, that brings my kids joy. So, you know, figuring that out as a caregiver is just really vital to overall quality of life and your happiness and like also your mental health when the holidays approach. Because the more confident you become in your decision and your approach to the holidays, the less I feel I can say personally, the less sad I feel about like my traditions not looking like I had imagined. Because like, I just feel really confident and in what we do and happy with it. So not to say there is it like a moment, there’s always a moment for me when it’s like, Oh, but I can’t help but to wonder, like if that would be there regardless. Caregiving on the table or off. Like, I think as parents, we just tend to imagine doing things a certain way and then when it doesn’t unfold exactly like that, you always wonder what it would have looked like had it. So as we wrap this conversation up, because as you mentioned, we were not going to talk about the holidays, but then I literally did have to survive this holiday. I had to survive the flu A and B, and our plans for what we had to required went out the window. We adjusted, our expectations flickered. I was laughing myself a little bit right out there is that they we thought we would do also. What is your leg hot take on this combo with holidays. Wrap it up for us. Bring us home baby. 

[00:41:53] Alyssa Nutile I think my hot take is that you do not have to feel guilty for whatever the holidays look like for you. Not only do you not have to feel guilty about whatever the holidays look like for you, you also do not have to explain yourself to anyone about what the holidays look like for you. And if people invite you to things or would like you to come to things and you ask for the most basic accommodations and even like very nicely, if they can’t do anything to help you, you know, they’re like apologetic about it. You can also very kindly be like, okay, yeah, we’re not coming because you don’t have room for us really there. And that can just be the end of it and you get to protect your peace that way. 

[00:42:43] Erica Stearns I love that. 

[00:42:44] Alyssa Nutile You don’t have to be bullied into going outside during a snowstorm or going to somewhere where you’re going to have to lift your kid up two flights of stairs to like get them to the train display or whatever. Like you can do whatever works for you and you don’t have to explain yourself. 

[00:42:59] Erica Stearns Love it. 

[00:43:00] Alyssa Nutile What’s your hot take, Erica? 

[00:43:02] Erica Stearns I’m going to borrow what you actually wrote. So my take is that it’s okay to survive and not thrive through the holidays. I’m a good example of that today. I’ve been in this very same place before where maybe it was our child who was sick over the holidays or hospitalized definitely felt like survival. But in hindsight I see that we were thriving through that. So I may not feel like you’re thriving in the moment, but these are all memories. These are just a part of it. And I’m I’m proud of what we have survived. I really am. I’m proud of how we’ve made these experiences our own. And we’ve found ways to, like, find joy and happiness in it. So I hope that others can find that and, you know, kind of bask in those feelings as well. 

[00:43:55] Alyssa Nutile And there’s totally an aspect to like, there are parts of this life that like, you just kind of have to get through at points. And it’s not fair that sometimes the holidays like can feel like that time, but sometimes it is just easier to let go of expectations and then get through it and make your family memories and stuff in the parts of your life that like are a little quieter and a little chillier and fewer outside expectations or whatever. Whatever you do, you can celebrate the holidays and march if you want to. I mean. 

[00:44:34] Erica Stearns I was just going to say that no one said you can’t rain check these things. We totally go hard. And the summer with family gatherings and seeing people and getting the kids out, that is such a better time for us. So we’ve learned that and now we just know winter is coming. We stay and and you know, our socialization decreases, we hibernate. And that’s that’s just our reality. We’ve adjusted to it and we’re fine with that. Come summertime, we’re ready to try Christmas all over again. Christmas in July. There you go. 

[00:45:10] Alyssa Nutile I love. 

[00:45:10] Erica Stearns Blessed are the Hawaiian shirts put on a beard. 

[00:45:13] Alyssa Nutile We can all celebrate Christmas in July next summer. 

[00:45:16] Erica Stearns Oh, we should do that. We should have a little. 

[00:45:18] Alyssa Nutile Caregiver Christmas in July. Put it in your calendars. We’re doing it. All right. I think we covered it. A bunch of thoughts about holiday survival. 

[00:45:28] Erica Stearns We said we didn’t have a lot to say about this. 

[00:45:31] Alyssa Nutile Well, on that note of the website again and the newsletter, we’re going to have more details for you. More thoughts? A much longer list that doesn’t involve us, like rambling selection in a blog post. It’ll be like a 10 or 15 minute read on the website and you can get it there. And it’s linked in the show notes right now. Also linked in the show notes, because Erica mentioned that while we had plans to talk about today, got derailed a little bit due to illness and a variety of other things. Our original conversation, I think, had some intentions to go over the last article we wrote, which is our why we call ourselves Caregivers article. So we’re not going to rehash all that right now, but I thought it was a really good, really thoughtful article. A lot of people. 

[00:46:20] Erica Stearns So good. 

[00:46:21] Alyssa Nutile Seemed to find value in it, especially when it comes to like having language to talk to your family about what’s going on in your life, why your life looks different maybe than the typical parenting journey, what you need that’s different perhaps from a typical parent. I know that a lot of our original like first 2 or 3 episodes of this podcast covered that topic. But the article we wrote is like really concise, is going to have a lot of really helpful examples for you. I think just to give you some language, when you do have family members like kind of digging in and like asking and maybe they’re trying to be helpful, you know, but sometimes you get that like deer in the headlights, like, oh, I don’t know, we just do medical stuff and whatever. Like, this article is going to help you out with that. And we also have that linked in the show notes, I believe. 

[00:47:16] Erica Stearns We’ll talk about that in the future. Mm hmm. Because, I mean, what we just covered regarding the holidays touches on, you know, just like the caregiver continuum that we’ve mentioned in the past and how we evolve as parents, as people to accommodate and adjust to our children’s needs and our changing needs. So much of that actually does center around how we interact with our family and the way that we socialize and maintain or create new traditions. So just really, really great read. So yeah, check out the website, check out the blogs, see us on Instagram and, you know, May the force of caffeinated caregiving be with you to have with is lafrieda but operate out I’m. 

[00:48:03] Alyssa Nutile Never not going to laugh at that. 

[00:48:06] Erica Stearns All right. Oh oh. Is that until next time. Take care of yourself. Get your flu shot. You won’t regret it. 

[00:48:16] Alyssa Nutile Until next time. Bye, guys.