Ep 3: Disability-Informed Caregiving and a couple of really good moms (and no, we’re not talking about ourselves)

[00:00:00] Erica Stearns Don’t think it’s that huge of a leap to maybe say the most caregivers. I’ve had that moment where they have snapped and the loved one hat stays on. But that caregiver advocacy hat takes precedence. I mean, it’s like going into beast mode, honestly. Welcome to Caffeinated Caregivers, where we have coffee dates and conversations about all things related to caregiving. Hello. Hello, Melissa. 

[00:00:42] Alyssa Nutile Hi, Erica. Well, should we just jump right in? What’s fueling you today? 

[00:00:48] Erica Stearns That seems appropriate. Mm hmm. Well, to be completely honest, two cups of coffee have already fueled me. I feel like I’m going to let a lot of people down today because I am now on to decaffeinated tea with woman. She’s had a lot of coffee already, so I could not go into this jittery. I decided Decaffeinated was a safe route to take. How about you? So what are you sipping on over there? 

[00:01:12] Alyssa Nutile So I just want to, like, reiterate. You’re just drinking, like, hot flavored water right now. That’s what it’s doing for you. I know. Not even caffeinated. Just hot water. 

[00:01:25] Erica Stearns Hey, you got to do what we got to do, right? I mean. 

[00:01:27] Alyssa Nutile I know, I know. And my husband is the same way, and I make fun of him, too. So I’m sorry for all of your un caffeinated friends out there. One, I think your life is probably, like, a lot easier because I get the jitters. I get nauseous if I don’t have caffeine. I have all these problems related to caffeine, and yet I still drink it. I don’t know what’s wrong with us. 

[00:01:50] Erica Stearns For the record, I am definitely caffeinated right now. Like, probably overly so. Right. New. I cannot do a third cup of caffeine, folks. It’s like 1130 my time here, which means since 7 a.m., I’ve had two large cups of coffee. I feel like I’m at my peak. Yeah, I’m at my peak. Sleep. 

[00:02:14] Alyssa Nutile Okay, well, I. It’s 1230 here, so I actually did already drink my coffee for the day. It’s the same thing. Just cold brew in a cup. But I did bring one of my big flower vase Water glasses for you was cold water right out of my fridge. No ice cubes. So it doesn’t like clink clink around during this episode. 

[00:02:34] Erica Stearns It’s smart. 

[00:02:36] Alyssa Nutile But that’s feeling me. The egg sandwich that I just ate is feeling me. And you know what? I wore flannel yesterday for the first time this fall because it was 90 degrees here. And I live in northwest Pennsylvania. Guys like this isn’t like coming from Georgia. And it was 90 degrees in September. No, it was 90 degrees in Erie, Pennsylvania. And it is not supposed to be 90 degrees here in September. So that was two weeks ago. And then yesterday, finally, I got to wear flannel and boots, which was super basic. But I am basically like, I am I don’t know, I’m in my thirties now. I don’t care about any of that stuff anymore. So that was fun. That was nice. Oh, that sounds nice. 

[00:03:18] Erica Stearns I have a caffeinated confessional for you today. 

[00:03:22] Alyssa Nutile Can’t wait to hear this. 

[00:03:23] Erica Stearns Are you ready? 

[00:03:24] Alyssa Nutile Oh, yeah, I’m ready. 

[00:03:26] Erica Stearns Full disclosure, this morning was the first time I’ve showered since Thursday night. 

[00:03:31] Alyssa Nutile Oh, been there. 

[00:03:32] Erica Stearns This is the most clean, put together version of me that you’re going to have for a while. This is not going to happen all the time, Melissa. My confession is that I got really excited today when I discovered that I have a full white gray hair growing towards the front. And I just have to say, I have frickin earned this gray hair. I’ve named her. Her name is Agnes. I’m so excited. She better not fall out. I’m going to keep an eye on her every single day from here on out. This probably sounds super silly or trivial to people who grade early, but I’ve been through some stuff in my life and I kind of wanted some gray hair to show for it. And this girl showed up and I’m just like, Yes, it is about time. Where have you been? Yes, that’s me. Caffeinated Confessionals. I was really excited to get here and tell you that I have a gray hair. Like for white, not even gray. She is white. You know, I have one thing go right in life. It’s that I will have a full white streak in front of my hair because let’s face it, that Cruella de Vil look is smoke, and I’m here for it. 

[00:04:43] Alyssa Nutile Okay. Did you watch TLC’s What Not to Wear it with Stacy and Clinton. 

[00:04:47] Erica Stearns Are you going to judge me if I say no? 

[00:04:50] Alyssa Nutile A little bit, yeah. 

[00:04:51] Erica Stearns You know Jay-Z on there. 

[00:04:53] Alyssa Nutile She’s fabulous. But she also has this, like, white streak right in the front of her hair. And that was my, like, middle school come home from school and, like, sit in front of the TV and watch my anime shows on network and then watch TLC is what not to wear. And they were so fabulous. And I was like, They’re in my ear like, Well, rise Bellbottom jeans and like, stringy camisole because that’s what we were all wearing early 2000 and it was terrible. But they looked fabulous on that show and. Stacey’s hair was always so good. She had that big white stripe in her, like nice black hair behind it. It wasn’t like a graying white hair. She had one of those things where, like, you just have that white patch in the front, but it looked so good on her. So anyway, you’re going to look fabulous once it comes in. 

[00:05:39] Erica Stearns I mean, let’s hope that’s what happens, right? That’s what I’m holding out for. I’ve earned it. I feel like I’ve definitely earned it. I do want to say in regards to fall and you being able to wear flannels and boots, I think it’s important for me to say that I’m also fueled today by allergy medicine that is finally working. These last few days. Of the first few days, I’ve woken up and I’m like, Oh, I’m not dying all morning long. I can breathe. This is what breathing feels like. This is amazing. Very proud to say that for those of you who are suffering along with us, I think we’re almost through the end of this. Maybe we’ll see. Now for you, you have the leaves that are going to fall. 

[00:06:20] Alyssa Nutile We have the leaves, and then I’ll be suffering until the snow comes, which again, no one knows when that’s going to be here. I live on the shore of Lake Erie, so we get a lot of lake effect snow. But when it first pops up, like it could be like the second weekend of November, it could be like not until January. No one knows, especially this last year. No one knows. It’s a mystery. 

[00:06:46] Erica Stearns Right? Aliza, last week we talked about ourselves. Oh, that was hard. We both came away from that conversation sweating, I’m pretty sure. How about you? Where you studied? Is that just me? 

[00:07:02] Alyssa Nutile Oh, my God. Yeah, We talk about it in that episode, but for a lot of reasons. Like, that’s an uncomfortable episode just because, like, I think it’s still very weird for both of us to talk about it. And also this will be relevant for today, but like the caregiver side of it, like you’re not used to talking about yourself in this context. Brie’s talking about like our kids and our kids medical stuff. Maybe not to the general public, right? But like with their doctors and like maybe with family members and stuff like that, like you sort of have a script written out for the way that you talk to other medical professionals or people at large. And I don’t have that for myself. So it was a lot of like just making it up on the fly and it’s just not comfortable, you know? But necessary. But not comfortable. 

[00:07:48] Erica Stearns I agree. I could tell that today we were kind of prepared for maybe some more discomfort because what the people listening to us right now do not know is that we were definitely signing each other memes this morning, just like pumper selves up for the upcoming conversation. I think like last week we both came away from it like, Oh, that was rough. We didn’t do that last time. I thought it was a great way to pregame for today, so I really appreciated that. 

[00:08:16] Alyssa Nutile And to be clear, guys, not just caregiver related memes, like just the weirdest meme that you can find on the internet, just random stuff. There is stuff about books, there is stuff about personality. There was just. 

[00:08:31] Erica Stearns Like topic is one. 

[00:08:32] Alyssa Nutile That I think I found about. Oh, I sent you the one about the song. Yeah. 

[00:08:37] Erica Stearns Who’s good? It was just what I needed though. It was really great. So with that said, they were coming here to talk about how having grown up with disabilities informed our experience as caregivers, and there’s really no other way to start the conversation than honestly praising our parents. Right? Like this is the most appropriate starting point. We both got to see examples of people who played the role of a caregiver and a parent as well. So do you want to share about the example that your parents set as caregivers in your life? 

[00:09:16] Alyssa Nutile Yeah. So first, I just want to put out there. If you haven’t listened to the last episode where we talk about like our own experience with disability, I would go do that first because we have some good examples in there just because like obviously that’s a really big part of our story, how our parents impacted our life growing up and the ways that they advocated for us. But to build out on that a little bit more. My mom, she was a nurse for her entire career, and so growing up with her was really interesting because she was both a caregiver to me at certain points, as well as a medical professional who does that for people for a living. And so it was really interesting to see her navigate those two parts of her life, the caregiving that she got paid for, and then the caregiving that she did at home. In our family, most of our issues were orthopedic. And I do mean like not just me. My dad at one point both tore his ACL and broke the ankle so bad. On his opposite leg from the ACL tear that he had to have like screws and stuff put in. So my poor mom did a lot of caretaking for a variety of orthopedic injuries at points in her life. 

[00:10:36] Erica Stearns I’d say so, yeah. 

[00:10:39] Alyssa Nutile But yeah, she was always really good at taking me seriously. And I had a lot of pain related to my disabilities and I got very good, like most people do with chronic pain. Like, it’s not that you don’t notice it, but you don’t talk about it really, unless it reaches a certain level, right? Because it’s like, Well, it hurts every day and every day. I’m not going to wake up and go tell my mom it hurts for six years in a row. But you can you know, it’s the thing that I would bring up if it was getting better, if it was getting worse or whatever. And she was always really responsive to that. Her first thing would be like, okay, do you want me to call the physical therapist or We need a doctor’s appointment? Like you tell me, like, what do we need? Do you just feel like you need extra Motrin today? Like, what’s the thing? But it was never like, Oh, maybe you just feel that way because you’re tired or whatever. It was never anything like that. And that helps, right? Because I do think this is the thing. Well, not I think I know this is the thing that comes up a lot for people of all types of disability is you get a lot of people who are like, they just don’t quite take you seriously. Either they think it’s in your head or they’re a lot of times just like tired of hearing you talk about it. I think I did never feel that way from my mom. She was very good about that. She was a really good advocate both for me and I also touched on this in the last episode, but my daughter Gemma, when she was first born, we had an eight week nick stay and it was a whole ordeal. And having her there to make friends with all the nurses when I was not capable of really like responding to external stimuli from people really at all in the middle of all of that and then being able to use those relationships she made with our Nikki nurses to like make sure that we got to stay in the room that we were really comfortable in with the nurse that we had since Gemma was born. Right. And not get like moved across the hall and just like all these little things that you don’t really think about. But looking back, they’re such game changers for the experience that you had. Right? And so, you know, like, I’m not going to say that she’s a perfect mom, Like there’s no perfect moms. But she was really good about that. And just having her in our corner to, like, deal with the medical things, with a person who already sort of understood how to navigate in the medical system was hugely beneficial. So what about you, Erica? What’s your experience with your parents? 

[00:13:03] Erica Stearns Well, I think I need to just say from the top that I did not fully appreciate all of the caregiver related tasks and responsibilities that my parents took on until I became a caregiver. I have a huge amount of respect for my mother because she ended up doing the majority of my most critical care and parenting on her own. She was a single mom. This kind of feels like TMI, but I think it needs to be said because there may be people listening who have experienced this. My biological father was really scared by all the care that I required, and he wasn’t really around to support my mom at all through that. So my mother’s main support system became her own mother, and then that gradually expanded to her siblings. She had seven siblings, so my aunts and my uncles became really involved in my care, more so than most people I know. I mean, my my sister and my two brother in law’s, they’re not as involved in my children’s care as my aunts and uncles were. So I feel really lucky to have had many examples of that that were both like my immediate parents, but also my extended family. Looking back on it, my mother was clearly very resilient, very strong. I can’t imagine going through everything she went through without a partner in this. And so I just have an immense amount of respect for her. When I was about four or five, she met my stepdad, and my stepdad immediately fell in love with me and I pretty quickly adored him. He is a phenomenal person and he came into our lives and just swept us both off our feet. Loved me like his own child. He was not afraid of the trick, the suctioning, the equipment, the oxygen. He was there for it all. And he also treated me like every other child. It set him apart from other people coming into our lives who were maybe a little bit more afraid to play with me. Maybe they perceive me as being more fragile than I was. So again, I just feel really lucky that not only did I have an amazing parent and caregiver, but I got to see and experience caregiving from people who didn’t really have to show up. They were not obligated to, but they did. And honestly, I think that made me feel so loved. I know I grew up feeling like I could conquer anything because I had this huge support system behind me. However, there was a lot of medical trauma occurring throughout my childhood, things that I experienced in the hospital studying and in the medical starting that have had a lasting impact on me. So while I had really great examples of caregivers in my life, that doesn’t negate the fact that I did come into this role with some trauma, with some things that I really still hadn’t processed, and in some ways I was forced to process. I would say that started immediately for me. How about you? 

[00:16:36] Alyssa Nutile Yeah, I did bring a lot of medical baggage into this experience. I think that’s the one thing about having experience with disability before caregiving is that you do learn a lot of things that are really helpful, but you also develop a lot of coping mechanisms that I’m sure they are helpful for some people. But some of mine made it really difficult to navigate Gemma’s care for a while. Like, for example, when you have chronic pain, especially as a kid, one of the coping mechanisms that I developed was just being very good at dissociating because there’s nothing that you can do that makes the pain better except to just ignore it and try to like be out of yourself a little bit. So I got really good at that. To the point though, where that just became my nervous systems like default to really stressful situations, including being in the you with Gemma and having to make spur of the moment sometimes really important decisions. And you know, we’d have like doctors and medical professionals and nurses trying to get answers and trying to like have conversations with me and I could respond to them like it wasn’t like I couldn’t talk back to them, but like there was no, like emotional response that they would get. And so sometimes that was very hard for them to like determine like, okay, do you actually want this? Do you feel pressure? Like it was just a lot of confusion on both parts. And I’m like, no, you’re just going to have to like, take my word for it. And like, I’m probably not going to respond to you in any sort of emotional capacity at this point. And I know that sounds like a little thing, but I have discovered that me not having a really big emotional response to things that, like most people have big emotional responses towards. It’s very unnerving for people, especially people who don’t know me well and they don’t know my history and that sort of thing. And that was the thing that was directly related to growing up with just a lot of pain. And even now I’ve done therapy and I take medicine and that sort of thing, and it’s helped with that reaction. But it’s still a thing that to this day I bring that. Along with me. What about you, Erica? 

[00:18:45] Erica Stearns I agree with a lot of that. I stole I think we talked about this a little bit in our first episode. I’m still learning the dissociation and how that shows up in my own life. This entire experience for me has brought up some personality traits that I’m still trying to figure out, and that is being a people pleaser and the need for control. And I realize this started in my childhood wanting to be a people pleaser for the nurses and the doctors. The idea of feeling like I needed to control things. So the activities I did when I was in the hospital to just dissociate. There’s that word and feel like I had control of something. So for me that was coloring, I was obsessive about coloring within the lines and making sure everything was like very realistic and as close to accurate as possible. And that was a way that I had control of the situation. The people pleasing. I noticed showing up pretty instantly. There was definitely a period of time after Margot was born when I ignored my gut instincts to just kind of people please the doctors. I had to learn to stop that. I had to learn the appropriate use for it too. I’m sure this will come up later, but it’s really important for me to have a good partnership with my children’s care team. But there’s obviously like a threshold. There’s obviously boundaries with them. And I was letting some of my own boundaries be worked over. I was allowing myself to be pushed on being that maybe I didn’t have the confidence to advocate against or to advocate for something different. If anything, caregiving has just like really magnified that these personality traits that I’ve always had are were maybe coping mechanisms from when I was younger and having had therapy now and support and really navigating that. It’s been tremendously helpful to just learn how to not necessarily remove those parts of myself, because those are very deeply ingrained aspects of who I am. But therapy has helped me to recognize when these personality traits become amplified or triggered in response to crisis and chronic stress. Because another part of this is that I become kind of like a machine. I become super hyper vigilant when there’s a crisis and there are a lot of crises in our lives. So I just can’t help but to think that my kids don’t want a machine. They want a mom in those situations. But I go into kind of overdrive and I immediately begin operating in these predictable patterns of like, you know, step one, Step two, Step three. And sometimes I forget in all of those steps, the most important thing in that moment is to sit down and comfort my child. So that’s where medical drama has come up in my life. And my mom always stopped to hug me. But I do recognize now moments when things were really scary. I was definitely getting the expert in my care who became activated and went into caregiver mode instead of just mom mode. And so, like you said, dissociating, figuring out the words that all of that’s been really helpful. 

[00:22:27] Alyssa Nutile I totally relate to all of that. Especially, you know, like figuring out what’s happening in your nervous system and that sort of thing in the way that it’s that you’re responding to stress and stress triggers. It’s not all negative, though. Right. Because I think having had to be like, so aware of my body and like, what’s going to affect my body and what’s going to, like, make it hurt more or less or whatever, made me very self aware of like what is happening in my body a lot of times. Oh, yeah. And so I was able to recognize. Not necessarily like, stop or immediately, like change the things that behaviors that were having a negative impact, but definitely like recognize what was going on. And that was beneficial when it came to getting help for myself. And on that note of getting help or not for myself, we I think, touched on this a little bit in the last episode, too. But I think it’s fair to say that neither one of us were maybe the best at advocating for ourselves through our experience as kids or even as adults. A lot of times, I should say, it wasn’t a super smooth transition to learning how to be a good advocate for Gemma in the very first moments. Right, Because I was having like so many of those dissociative episodes, like when she was in the NICU. But I did eventually, before she came home, figure out like what we needed to do advocacy wise. We had a couple really big moments when she was in the NICU, so it was kind of like something snapped at a certain point. Like you can just sort of see all the ways in which, like you haven’t advocated for yourself or your kid up to this point. And then you’re just like, No, I’m not doing it anymore. So for us, that meant getting Gemma a NICU transfer that our hospital really did not want to give us, even though we had certain professionals recommending that that was going to be the best option for us. Got this. 

[00:24:24] Erica Stearns Thing happened to. 

[00:24:25] Alyssa Nutile Us? Yes. I had to pay an ambulance fee because they were like, All right, well, we’re not going to deem this medically necessary. So it was the whole thing. It was awful. So that and then also my daughter had several surgeries. She had one surgery and then she had several revisions for that surgery because it wouldn’t heal. And so there was a certain point in time when she was in the nick at the second hospital, and I was watching like the stitches come undone every day, hour by hour for my daughter. And they’re like, We’ll see. We’ll see. And I’m like, No, we’ve already done this before. And so what I ended up doing is calling the surgeon back at our old hospital and be like, I don’t know what to do, but this is not right. That surgeon called the surgeon at the current hospital we were at. And like 15 minutes later, that surgeon comes like waltzing in the room with her whole neuro team and was like, Get out of the way. I hear this baby’s stitches in her scalp are coming undone. And that was basically it. And so I was like, Huh, I guess advocacy does work now. 

[00:25:27] Erica Stearns This is a reality TV show I would watch when medical moms snap. Yeah. Why is that out there? Come on. 

[00:25:34] Alyssa Nutile Oh, my God. Seriously, though, I don’t think I’ve ever been so forceful in my life as in, like, that moment. 

[00:25:40] Erica Stearns I agree. 

[00:25:41] Alyssa Nutile My kids stitches are not healing. We’re not doing another surgery. We actually did do another surgery, but that was the last one. So it’s like someone fix it. Did you have a moment like that? 

[00:25:50] Erica Stearns Your God, did I snap? Yes. Hey, Dad, I had a snap. Very similar. I mean, it’s wild to me that you had almost an identical situation as my own. I just can’t help to think of how many other caregivers have experienced that, whether it be because you had to advocate for them to go to a more advanced hospital or for a procedure to finally be done or not be done. And don’t think it’s that huge of a leap to maybe say the most caregivers. I’ve had that moment where they have snapped and the loved one hat stays on, but that caregiver advocacy hat takes precedence. I mean, it’s like going into beast mode. 

[00:26:35] Alyssa Nutile Honestly, it was. And I thought it was interesting, too, because I don’t think I ever really had a moment like that managing like my own chronic pain and disability. I remember my last surgery before my hip replacement. I was in my mid-teens and I had a doctor tell me like, okay, well, you don’t really have any bone or cartilage left here, but, you know, the longer you can wait to have a hip replacement, the fewer hip replacements you’ll have to have throughout your life. So he’s like, maybe I’ll make it to 30. Like, we’re just going to see how long you can deal with it. And when you can’t stand it anymore, come back and we’ll do a hip replacement. So a year and a half later I was back because I was like, I can’t walk and I can’t sit and I can’t sleep. So what additional suffering do I have to go through before I’m allowed to finally do this? But I wouldn’t even call that a snap, right? Because like we talked about it and then they’re like, okay, we’ll schedule it. And then if you still want to do it in the summer, we’ll do it. And we did. But even that going into it, I still was like, Oh, am I making the right decision then or no? And I did. I’m really glad I made that decision, but I did not have that moment of like anger and certainty like I did with drama. 

[00:27:46] Erica Stearns Yeah, No, same. I mean, I did advocate for my trach to come out, but it wasn’t a snapped situation as more just like me proving they carried team that I could and I was eligible candidate for the cancellation. I could sustain my oxygen saturation and all that. So definitely wasn’t a snapped moment like it was when I became an advocate for my child. And I want to make a very clear point and that the type of advocacy that I do for my children is very different from the type of advocacy I’ve ever done for myself, too. And to this day, all the advocacy that I do for myself is actually related to my kids. Like now I’m taking better care of myself. I’m being more proactive with like my wellness care, seen my specialists more so than I ever did because I had kids. And I know that I want to be around as long as possible to take care of them. So I have to take care of myself. 

[00:28:51] Alyssa Nutile Totally. I have that moment, too, where it’s like if I become less mobile again, like who is going to take care of Gemma? Who’s going to carry Gemma up and down the stairs? Like, who’s going to pick her up and put her in her chair or move her from her chair to like her kid card and stuff like that. When you’re younger, you’re like, Oh, I don’t want to hurt. I want to be able to do like, stuff that’s fun that like my friends are doing. And that’s sort of the perspective that you come at, from wanting to like manager disabilities and whatever better. And then you get into this role and you’re like, Oh my God, if something happens to me, who’s going to take care of my kid? And it’s just a whole different level of, yeah, like learning how to advocate for yourself. Like if I feel something’s wrong, like I’m going to have to make an appointment for the ortho and I can’t put it off right, because, like, I need to get this fixed before it gets bad because I have someone else counting on my head being in good shape for a long time now. 

[00:29:42] Erica Stearns Yeah. And you know, I’m sure that all parents have that kind of transformation. 

[00:29:47] Alyssa Nutile Where totally. 

[00:29:48] Erica Stearns You know, you don’t have to be a caregiver of a disabled child or medically complex child to have that reality of taking care of yourself so you can take care of your family come to fruition. You know, I think you can probably speak from having hearing that something changed when you had him when you left the hospital and suddenly started driving your car slower than you ever have. Right. It’s a transformative experience. And, you know, parenting, parenting, stressful. It’s busy. It’s all consuming. All the parents I saw while growing up seemed incredibly stressed out, super tired and just mildly grouchy all the time. So my parents, like I didn’t perceive them as being any more or less of those things than other parents. And the complaints they had were kind of on par with the things I saw other parents complaining about. So I never really felt like a burden growing up. And now as a mom, I think about how when, you know, we have friends or family around, they’re all kind of commiserating and complaining about life. And I hope that my kids are having the same kind of experience where they’re like, Oh, all moms are stressed. All moms seem pretty tired. All moms are just kind of. A little on edge at times. So I’m just hoping that is the perception they have of parenting in general so that I don’t stick out like a sore thumb, right? 

[00:31:27] Alyssa Nutile Totally. So my first foray into parenting was not in the like, medically complex from my oldest son is not disabled. Who. And yeah, like having kids at all is just hugely transformational. It changes your whole life and by necessity. Right. And broadly, I think in society, we have decided that it’s not really okay for very good reasons. It’s not really okay to treat your children like a burden of any kind, right? Like, that’s just language that I think most of us are like, pretty uncomfortable with. And the same for having, like, medically complex children. And I certainly didn’t feel that way with my mom. And again, she a nurse too. So sometimes I would feel bad because I’m like, Mom, you go and you take care of people all day. Like your whole career is taking care of people and then you have to come home and like, take care of me, take care of my dad when he broke his ankle and all that stuff. And I never once saw her complain about that. And that was a really good example for me. And I think I like to think that I’ve done a good job of trying to embody that with my own children. And if I’m not doing a good job, it’s definitely the end goal. That’s the example that I would like to hold out for them eventually is that, you know, life is hard sometimes, but everybody’s got something to complain about some way or another. And I’m not saying that like we don’t have it worse or we don’t have a different but just the idea that like. Life can be hard, but your existence in it doesn’t have to, you know, you don’t have to put that on the other people in your orbit. Right. Particularly your children. 

[00:33:12] Erica Stearns Yeah, I agree. And my mom never outright made me feel like a burden. But I like looking back. My mom also spent several hours on weekday evenings on the phone in the garage away from me, like out of earshot with her decaf coffee, which I just love like that. There are some similarities here. She had support. She had friends who were either in the medical field or family who had just like kind of been in the trenches of this life with her from the beginning. She had a community of support. While it wasn’t necessarily other caregivers, she did have people that she turned to. And I am like 99% certain that she complained she had words about this experience and how hard it is, and rightfully so. And I’m so glad she had that. And I think that’s kind of what this is for us, right? Like, we’re not here to complain, but there are hardships that we experience and just getting on the phone or signing a text message or a meme and be like, Dang, this is hard. Are you experiencing this too? That is huge. It’s so validating. 

[00:34:29] Alyssa Nutile I do remember on that note, at one point maybe my mom told me this later, or maybe somebody at one of her friends told me about like, especially, like towards the end when I was like, dealing with, like, really intense pain, like, every day, kind of like in between my last two surgeries, my mom seemed like she, like, had things like, under control, right? Like, she seemed like she knew what she was doing. She was talking to like, the orthopedic doctors. She was finding me appointments to go to with the best surgeons that we could find around because hip replacements are an 18 year old is a pretty big deal. So she was doing all of that and I was like, Wow, this must be easy. She’s so cool, like going about doing this or whatever. And then she told me later that she like, would just call people crying about it because she understood to some degree. She also had hip issues. She understood like the kind of pain that I was going through and like having to watch your kid struggle through something is really, really hard. And even if you keep it together for them, it’s still going to be hard and you still need an outlet to like give that to if nothing else, just so that like you don’t have to put that on their kids, right? Like you can go and like that and like cry to your friends and get the support you need so that like when you show up for your kid, they’re like, Oh my God, my mom is amazing and she’s got this under control and whatever, even though that’s like a total ruse and you definitely don’t. 

[00:35:49] Erica Stearns Oh, yes, I agree with that completely. I love that both of our moms had that ability to to be good advocates, to be good caregivers, but also to allow themselves in those difficult times to really set in and release their emotions. I don’t know that I remember seeing my mom do that, but I think that I really spent a lot of time thinking about it. I feel like I could conjure up some memories of just seeing some noticeable differences in her overall like behavior, but I don’t think it was ever enough to make me feel like I was the cause of it. And I really hope my children are having the same experience. And I would say that I definitely strive for that. You know, my interactions with them are moments that I really cherish because I don’t really know how long I’m going to have those moments to celebrate. So we do try to make the best of it. 

[00:36:47] Alyssa Nutile Well, I think it’s interesting that we both have noticed that our parents were able to find a community. And I think with my mom, it was not as hard for her because it didn’t have a lot of like medical complexity per se. And I didn’t have any other like kind of disability. And I think orthopedic diseases make sense to people on some level, right? They’re like, Oh, like broken bones. I broke my ankle once. Like, I know what that, you know, So like, she sort of had that to rely on to find a group of people. Whereas when I was the kid going through that, I really didn’t have a community that was easy to find and that was very isolating and very alienating. And I do know that once we had Gemma, I did sort of have a moment where I was like, I’m not doing this by myself again. And it doesn’t necessarily have to be people like right around me, although we have some really close, like local friends who have been like really understanding and really helpful, but finding people broadly now, you know, like we’re able to connect over the Internet. And I was like, I’m doing that because I don’t want to have to go through this experience again because nobody I know in real life, quote unquote. Knows what we’re going through. But I know that other people have had that experience, and I don’t have to be the only one who just tries to figure this out on my own. 

[00:38:10] Erica Stearns Absolutely. Yes. Say it louder for the people in the back. No, I’m not. 

[00:38:17] Alyssa Nutile By yourself exactly that By yourself. I was clapping. 

[00:38:21] Erica Stearns I love that. And, you know, that’s why we’re here. That’s why we’re doing this. I want to break the stigma pretty early on for people that they don’t have to experience this alone. While my mom had good friends and good support, I know for a fact that some parts of this journey would have been a lot easier if she had had other caregiver friends, and even she has told me that so. I think there’s just something to be said for having peers in your space who have that foundational understanding of your life and your experiences. When I tell you that I’m a caregiver and we have a lot of appointments coming up, you inherently know what that means and the stress that it encompasses and all the feelings that are surrounded by those exchanges and interactions. I don’t have to explain that to you. That’s huge. You know, we’ve talked a lot about our parents, specifically our mothers, which, I mean, not everyone’s going to love this statement. So you can take this or leave us motherless. But there’s a lot of women predominantly in our community. I mean, there are men out there doing this, and we love you and we need you. But I think the majority of the people we have following us and interacting with us are women. So I love where this conversation has gone and the special ode to our mothers that they rightfully deserve. 

[00:39:52] Alyssa Nutile Yes. 

[00:39:53] Erica Stearns But I also think, you know, having two children born with disabilities helped me heal as a disabled person and as a disabled child. 

[00:40:05] Alyssa Nutile On that note of this experience, allowing you to understand your own a little better, I totally feel that. And having a child that’s disabled has put my own childhood in a lot of perspective, right? Like just the way that disability reaches into every aspect of your life and sort of informs every aspect of your life. And I think for us, since it is so all encompassing, that’s the thing that we have focused on in these first few conversations. But this sort of like understanding yourself and reevaluating the way that you look at all aspects of your life is not unique to disabled caregivers. Every person is going to have those moments of sort of understanding. Like once you have a disabled child, it puts your whole life and all of your experiences into perspective. So I just sort of want to say that, like we’ve spent a lot of this time being vulnerable and sharing our experiences because that’s what we know, and I think we’ve had similar experiences. But everybody is going to have moments that they’ll be able to look back to. And I encourage you to do that, like sort of take a look at your caregiving experience and think about now, like how you think about the rest of your life and like your previous experiences and how those are sort of intertwined, because we all have those areas and those moments that all of a sudden they make sense to us in a different way. 

[00:41:29] Erica Stearns Mm hmm. And for caregivers who are new to this journey, there’s going to be a lot of transformative moments if you’re at the beginning of this. I can tell you I’m not the same caregiver I was five, seven years ago. I hope that growth and evolution continues for me. I hope that in another ten years I’m able to recognize the way that this has impacted me in a positive way that has led to growth and the ability to thrive and themes like resilience. Well, I understand that neither you or I are able to go back in time and see our own mothers at the beginning, our own caregivers, when they first learned about our diagnoses. I think we can safely say that we’ve seen that evolution and growth in them. So I feel pretty confident it’s going to continue to happen for us. And here on this podcast, we just want everyone to know that no matter where they’re coming to this conversation, if they’re coming at the beginning of their coming 20 years and your experiences and where you are right now matters, we want to hear about it. We certainly can relate to it most likely. And if we can’t relate to it yet, we want that information to kind of prepare ourselves still. 

[00:42:51] Alyssa Nutile So just to wrap this up then on the journey aspect and healing and healing our inner child and hopefully making better decisions, maybe not better decisions. Maybe just like broadly a better experience for our own kids. I just I remember growing up with disabilities, and I think you’ve expressed similar similarly, like you just want to be so, quote unquote, like normal and typical and fit in because at the time, like that seemed like the only way to go about it was to try and hide your disabilities or your differences as much as possible and sort of push them under the rug. And now it’s clear to me that even just at the YMCA yesterday, I take my kids there a lot because I teach them lessons there occasionally at our local Y, and I make everyone, for better or worse, treat drama the same way as Carrie. Like when we go to like, Child Watch if we’re going to go. In there with kids or whatever, people would be like, Oh, does she need anything special? Like, what should I do? Can I take care of her? And here I’m like, You don’t have to do anything for her in here. Her brother knows how to play with her. She’ll set in her chair if you sing to her, if you talk to her, if you like, keep her near where the kids are, like she is going to be happy. You don’t have to do anything. And if you’re uncomfortable and you’re freaked out or something like, Just come get me like you would any other parent, she’s going to be fine. And like I said, if she’s not, you just come get me. She is going to have a normal experience and you’re and you’re not going to make it weird. And I could never do that for myself because I always, you know, like, not expressly thought it was a bad thing, but I was just always aware of, like, how different my experience was. And I’m very at this point now dedicated to making that as untrue as possible for Gemma and for Harry. Right. Because he does experience certain parts of this with her. And I guess that’s the thing that we haven’t touched on. But since I have a disabled and non disabled child, he does occasionally also get asked like really intrusive questions about her. And we’ve had our narratives too, where I’m like, You know what, Harry? She is perfectly fine. Like you don’t have to explain her to people. You can just tell her like she has a chair that helps her walk and that she doesn’t communicate the same way as everyone else. But she still likes to talk to people. And I was like, And that’s all you have to say. You don’t have to explain your sister to anyone. You don’t have to explain her to me. This is just that this is our experience and we’re going to make it as quote unquote, like I said, normal as possible. And it’s just not going to be a thing. My kids are good the way they are and your kids are good the way they are. And that’s it. 

[00:45:28] Erica Stearns Girl, You’re rocking this motherhood caregiver thing. I love that hot take here. Our experiences raising our children are intertwined, right? I mean, we’ve just spent this whole episode talking about how growing up with disabilities and receiving care shaped the way that we became caregivers to our own children. I’m able to recognize now that I actually was protected from a lot of scary events. I sought the comfort and protection of my mother in those moments. You know, like helps me to recognize that our caregivers took on a lot of that pain, fear, stress. I’d go so far as to say my mom probably didn’t disclose much, maybe hid some things, maybe didn’t fully convey just how scary certain procedures were because she didn’t want to terrify me and recognizing that we as caregivers do take on a lot of that heavy emotional labor of kind of navigating the medical system, navigating unknown procedures or complicated interventions. And for the parents and caregivers out there, I think this is just a good reminder that the work we’re doing, it shapes us. It’s meaningful. You are being impacted by it, too, and you know your reaction, the way that you navigate that is going to shape the people who you’re providing care for. It is certainly shaped both you and I. That being said, every conversation we have moving forward, it’s hard to separate that and we probably won’t ever be able to separate it with these conversations. 

[00:47:12] Alyssa Nutile I doubt it. Well, I think that’s a really good note to end on. 

[00:47:17] Erica Stearns The next few episodes may have a different feel because, you know, we just spent three sessions with you all telling you about ourselves. We’re here to tell you about what’s happening in our community, and we’ve kind of set the framework before, but we’re going to come with some research. We’re going to come with some facts, maybe some stuff you haven’t heard or, you know, knew about before. So I’m really excited. Do you think it’s going to sound that different also? 

[00:47:44] Alyssa Nutile I don’t think it’ll sound that different, but we are going to have, like you said, a little bit more research and probably a little bit more focused episodes going for ward. 

[00:47:52] Erica Stearns and guests. 

[00:47:53] Alyssa Nutile And some guests, some very fun guests. 

[00:47:56] Erica Stearns We’re keeping those secret for right now. But if you follow us on Instagram @caffeinated_caregivers, you might get some hints and sneak peeks of who’s going to join us. 

[00:48:09] Alyssa Nutile Erika I cannot wait. I cannot wait for our next episode. 

[00:48:12] Erica Stearns I am so excited to. I hope those of you who are listening are excited. If so, do you want to tell us about it? 

[00:48:18] Alyssa Nutile Yeah, if you are excited, if you like this just happen to your podcast app, whatever you’re listening to us on right now, it’s probably Apple or Spotify, but if you’ve got like one of the weird smaller ones out there, you do, Yo man, whatever app you’re in, just go leave us a review in me. Like it doesn’t have to be a long one. It doesn’t even have to be words. You can just give us five stars, hopefully five stars again if you’re like, This sucks. I hate the show. 

[00:48:47] Erica Stearns Well, take a time. 

[00:48:49] Alyssa Nutile Yeah, you’re. Welcome to send me an Instagram message, but pretty please don’t put it on the app. But you know you do. I can’t tell you what’s new anyway. We are really excited about this. But yeah, having a review from you guys would help. Just like let other people know that this is a show worth listening to. Yeah. And help us reach a few more people and make our caregiving community just that much bigger, which is awesome. All we want.

[00:49:15] Erica Stearns We want to grow. We want to just have everyone inside this little community. I love it. All right. Well, on that note, may the force of caffeinated caregiving be with y’all? I did it. I’m doing. 

[00:49:29] Alyssa Nutile A laugh at that every. 

[00:49:30] Erica Stearns Time they can with that. Who are keeping that in?