Episode 11 - More Than a Caregiver

speaker-0: Welcome to Even If the Special Needs Parenting Podcast. I'm Michaela and I'm Mariah. Howdy. Howdy. Are you from Texas? Howdy duty. I guess I am. How are you? ⁓ man. It's been a week. We've had an exciting week at our house this week. Yes. Explain. Yes. Homecoming it.

speaker-1: Yes.

speaker-0: Dar no, well yes, homecoming. But Darby's orchestra was chosen out of over a thousand applicants to play at the Christmas open house at the White House in December. So excited. I'm excited for her. All the kids are just, and I'm like, I don't think they realize just how big of it is big of a deal it is to like get chosen to play at an event like that. So that's a once in a lifetime thing they're gonna get to do. They're all gonna remember.

speaker-1: So ⁓

speaker-0: Yes. It's gonna be super pretty. It's gonna be Christmas. It's not gonna be hot. I wanna go so bad just because I want to actually enjoy cold weather somewhere. Yeah. So today we have a guest on. We have spent the last month basically talking about mental health, self-care, burnout, ⁓ basically recognizing when we need more than just basic self-care and support. So ⁓ our last episode we had a mental health professional on and she basically kind of helped understand ⁓ the professional and the mental health side of things. But today we're kind of bringing it back to everyday life where we're gonna have a parent on, just like everyone that's listening, ⁓ you know, that kind of gets it and has been there ⁓ to talk to her about her experiences and kind of what she deals with on a regular basis with her kids and her family and her life. So Welcome Emily. We're so excited that you're here to join us.

speaker-1: Thank you, I'm excited to be here.

speaker-0: Good. Tell us a little about you and you know, your life, your your family and your your kiddos.

speaker-1: Well, that's a lot. so I have two children with disabilities and totally, completely different disabilities. My daughter ⁓ is twenty four years old and she has spinal muscular atrophy type one. ⁓ so whenever she was diagnosed, at seven months old they told us like we were lucky if she saw her first birthday. And at that time when she first got diagnosed, that was like a long time ago when we had like guest book pages and, you know, not as much of the support system, you know. And so it was a it was really difficult at that time to find other people that had SMA to kind of find out how do I care for her, how do I navigate this. I ended up just a short version of the story is I just like search on guest books and I found like where are the children that are alive and what are they doing? And how how do they do in that? And We found Dr. Bach in at Rugder Rug I can never say that right. But Rugders Rutgers, whatever, I can't say it right. In New Jersey. I never can say that for some reason. But But we found him and he was seeing other people with deshens, but he was applying non-invasive ventilation, which was like not heard of at the time for individuals with nervuscular disease. And so we I found him two weeks later. I got a on a plane and flew me and Josh and Aubrey flew on a plane ⁓ into JFK and he showed us how to use a you know a BIPAP and a coffasis machine because everybody said just take her home and you know, you know, palliative care. ⁓ and he said there's no reason she can't be twelve years old and be driving a power chair. And he also taught us like the ⁓ a special diet for her to be on. And then at that time I basically devoted my life and time to caring for her. And then when she was six and a half, I ⁓ got pregnant with ⁓ my son Aiden. And I did the amniocetesis testing because they started having some treatments at that time that you could take like right there were still they were still in ⁓ experimental phase at that time, but there were some. So I was like, well, if he has it, I want to start him right when he's born. But we were told like he doesn't have it. He's just a carrier. So, you know, we were excited about that until he was 20 months old. He had a severe regression where he just stopped talking. He stopped looking at people. He stopped eating and was losing weight. And then he got diagnosed at 20 one or twenty two months with autism. So we kind of threw out the developmental book at that too, you know. So I was like, okay, you know, and I can remember at that time I was kinda like, okay, Lord, what are you what are you doing with this? You know, what am I how am I gonna navigate this? How am I gonna move forward in this? And ⁓ so at that time I was bringing like Aubrey to therapy every day and, you know, Aiden to therapy every day. And any anyway, we eventually navigated it. And now Aiden is 17 and a half. So now we're going through guardianship with him. And he's on the more higher support need side of of autism. And Aubrey's twenty-four. So I feel like that's pretty miraculous. She graduated high school and she's twenty-four. And so I feel like that's pretty miraculous that you know she's still here with us and have so much life to give. And I don't know, I guess that's the short version of my story.

speaker-0: But And you are you are married, correct? Have y'all been married?

speaker-1: Yes, yes. I'm there.

speaker-2: Thanks

speaker-1: ⁓ we got married when ⁓ Aubrey was five. And a lot of that was just navigating because at that time Josh went back to school and and we made too much money at that time, basically. So it was just for her to get Medicaid and but anyways. ⁓ so I married Josh and he is ⁓ petroleum engineer and he is, you know, has to do just as much care well not just as much, but he has to do a lot of caregiving too. between the two of my kids. So I'm grateful for that for sure. 'Cause that's that's hard.

speaker-0: Thanks for letting us know all about your kiddos. I personally know them and I think they are amazing and I love being around them and seeing pictures and videos and all the things that they're doing.

speaker-1: Aubrey is definitely yeah, Aubrey's definitely the spitfire one out of the out of the two. You know, she's definitely very headstrong. I think that helped her. Well, I feel like that helped her that helped her to navigate so much of what she's had to navigate, you know. And and Aiden is much more go in the flow. And I think he kind of didn't get get to have a choice in that. Having Aubrey as know his sister, 'cause she's just like, This is what you're gonna do, you know? So he's just such a good kid too that he's like, Okay, you know, he listens to her better than he listens to me. Like if I say, Hey Aiden, go like turn the light off and she's like, No, don't do that. He'll he'll go with what makes it hard on me. You know, she's like a laundry listener. That's how ⁓

speaker-0: That's how Lucy and Lincoln are like she'll tell him to do something and then it'll come to me and he'll be throwing a fit. And she, I have to do this because she told me to do it. I'm like, you don't have to do everything she tells you to do. She's not in charge of you. Like an older sibling. It's so funny. So one thing that we do, Emily, every podcast is we do a why did you cry?

speaker-1: This week.

speaker-0: Where we're like, okay, you know, we all cry things sometimes are ridiculous, sometimes, you know, they're legitimate, but it you know, it kinda just it's something fun to talk about to kinda commiserate over the crazy reasons that we cry during the week. It's fun to talk about why we cry.

speaker-1: Why have I so many ravens that I cry? But

speaker-0: I cried last night, lying in bed, 'cause it was like three AM and Dawson wouldn't go to sleep and I was exhausted and I was just like emotional and I was like, I just wanna go to sleep.

speaker-1: Totally feel that. I totally feel that. Yeah. I mean I cry I cry a lot, but I cry a few times. I'm just an emotional person. But like this this ⁓ I mean Aiden was looking at me like, What are you doing? I was yesterday I was driving to ⁓ his Miracle League game and they had that Zach Williams song that was like a long way home. Or is that what it no wait for me?

speaker-0: Yeah.

speaker-1: And it's ⁓ basically says like I took the long way home, but you know, and ⁓ like I took the long road. I took the long way home, but like you still wait for me. And it just kind of made me think about ⁓ you know, just my life and all the things that I had to navigate through, and you know, all the things that I had to come to, you know, just you know, and I had Aubrey young. I had Aubrey at 20. I was in college and I her and had to navigate all the things and just who I became who I am now and who I am still becoming. I was just thinking like, Lord, you must have thought, you know, I'm taking the long way home. You know, he's like, ⁓ this this chick is stubborn. You know? But whenever I heard that and he was like, But you but you know, you still wait for me. And it just made me feel overwhelmed, feeling like God's love, like

speaker-0: Ha ha ha.

speaker-1: You know, all the things that I've done and gone through and you know, mistakes I made and things that I, you know, you know, had to navigate through and you know, might have not I took the long way. They didn't take the easy way, I didn't take the best route, but that God still waited for me and I'm sitting here crying like

speaker-0: You know It's the worst when you're crying and driving. ⁓

speaker-1: And and Aiden's looking at me like, Mama sad? And I was like, I'm like, I can't see. I can't see. Like, what color is this light? You know, when I'm driving. I'm like, this is I'm gonna have to pull over if I don't stop. and then of course today in church I'm like, Emily, get it together. Because ⁓ I pastor's like, whenever you pass the piece, you know, he's like, Pass the piece, but he's like, But today I want you to tell instead of saying, you know, good morning or whatever, I want you to tell everyone you were beloved. Because that's how God sees you. So whoever you shake hands with, you have to say you are beloved like you're beloved, you're beloved. So by after the fur fifth person told me you were beloved, I'm I'm like weeping. You know, I'm weeping. And then, you know, ⁓ and then the th like the fifth person I was like I couldn't even tell them back that they're beloved him. You know, and I was like, ⁓ my gosh, you gotta get it together. You know. But anyway, that that's those are the two reasons that I cried. Just that, you know, how much God sees us and ⁓ how we should see each other and how He sees us and just kind of embodying and feeling that no matter what we've gone through or what we do or that, you know, we're beloved and so is everybody else and we've just got emotional about that in church. But anyway.

speaker-0: Sympathize. It does not take much to to get me to cry too. So yeah. So why did you cry this week? so we had a wedding yesterday, and I ⁓ just weddings just always get me anymore. I just because one, I see the bride walking down with her dad, and it just that point sets me off. ⁓ yeah. I mean, I know I have a I know I have a daughter that can walk and hopefully will, you know, walk with. her daddy down the aisle. But then I think of Lucy and I think of, you know, I want her to find somebody one day that'll love her and take care of her. And, you know, she may not be able to walk down the aisle, but she can still, you know, just those things pop into my mind whenever I see that. And then I look at the groom and then he's crying and he's wiping his tears because he sees his bride coming down. And then that sets me off too. Yeah. It was Yeah. Weddings

speaker-1: So yeah.

speaker-0: ⁓ weddings.

speaker-1: You see too like the very beginning. It's like the beginning of their life. It's so fresh. You know, you see them like this is the beginning. It's so fresh and they're walking down the aisle and you know, you you just start seeing from like our vantage point that we're on now, like all the things that they're gonna go through, but it's still so fresh in in love and like what I don't know. It just gets to me. Like here they were at the beginning, you know.

speaker-0: So transitioning out of that and all the things that we deal with on a regular basis, what we're gonna do is talk about kind of whatever day looks like for you moving forward. ⁓ so basically, what does a typical day look like for you, you know, in your family and your kids right now? ⁓

speaker-1: So I am so, you know, a typical day for us now looks like, you know, I'm I'm the primary caregiver for Aubrey. you know, so I have to do like all her respiratory treatments and all of that kind of stuff. ⁓ you know, all her transfers. she can only use like, you know, one finger, so sometimes she likes to do everything. So I have to hand over hand any any kind of activity that we do. ⁓ unless I use some like switches or things that she uses. I do home school Aiden. He was in like ABA therapy for a long time and we did in clinic and in home, but now since he's older, I kinda transitioned him to a more like apprenticeship type in home school kinda base it on what I feel like he needs now to growing into adulthood. So I'm home schooling him. ⁓ and he's really learning how like follow a schedule and becoming more independent as as he can. So ⁓ work like work really hard with him every day on becoming as independent as he can. So he is learning how to follow a schedule and you know, go through that, make his lunch by himself and all those kind of things. and it's still ⁓ in the afternoons we usually have like of activities. They both go to like they have a adaptive dance class or What else? Aiden is in ⁓ Special Olympics basketball. So we do all kind of activities also in the you know, afternoon. You know, and it's just you know, day to day, going different places, going to the grocery store, going like they go every everywhere with me. So that's kinda where we are we're at now. nothing is specially, you know, out of the ordinary, I guess, other than just the caregiving that I have to do and It's not just going to a a quick run to the grocery store with us. I'm like like one of those people ⁓ lugging all the machines with us 'cause, you know, Aubrey has to have her Bipap and her coffes machine everywhere she goes and she's on a feeding pump. So she's on twenty four hour ⁓ you know, feeding. So a lot of it though now Aiden knows, so he helps me. So if we're going to the grocery store or Starbucks or restaurant or anything, like he's like, ⁓ I need to get Aubrey's BiPap, he'll go get he knows. He gets all the stuff and helps me strap her in to the car. He knows, you know, how to do all that. And ⁓ so that's kind of where we're navigating. Also, like right now, I just started a nonprofit for individuals with disabilities. So we're also, you know, doing that during the week several times. ⁓ where we're creating like artisan made goods and, you know, learning how to make candles and, you know, soap and different type of things so they can eventually have a job. Cause that's what I'm working toward of how can we adapt. How can we adapt environments to where you know individuals with higher support needs can be successful and have a job and have a meaningful life? So I'm just trying to navigate now that we're older, you know, what does that look like? How do we do it? And you know, and how do they build community with other people? So we're, you know, excited that we do have a community, like we do Sunday school on Sundays that ⁓ started adaptive ministry. at our church and like I said, basketball and he does base we do baseball on Saturday. So every day we have some type of activity. That way it's really about building community and I feel like that's kind of our focus is building community around them and building a meaningful life so they're not isolated and alone and 'cause it's been hard transitioning into adulthood. Can I just say that? ⁓ that is super hard and something that I did not want to think about for a long time. And so that's kind of that's kind of on the forefront of my mind almost all the time now. So I don't know.

speaker-0: So you're not busy at all. Like not even.

speaker-1: Not no, I'm not at all. But I'm yeah, we're always doing something. Yeah. Like they they can't just need me, they need other people. ⁓ now that we're not with in the school system anymore, we're not in a lot of the typical therapies anymore because they're so much older. You know. So 'Cause our days used to be filled with OTPT speech, you know, music therapy and swim therapy, and now that they're turning into adulthood, a lot of those things don't transition with you. So that's what we're trying, we're trying to navigate that.

speaker-0: Right. ⁓ So in in the area of you know that we've been focusing on this these last few weeks of mental health, ⁓ after hearing all the things that you do and have to take care of on a regular basis, which is, you know, not much at all, was there a time that you realized that you weren't just tired? ⁓ that the weight of everything was affecting your mental health?

speaker-1: yeah. I mean, I feel like that happened at different periods. You know, in different ways and different periods of like things that ⁓ we've gone through. So like I think in there like for instance, when Aubrey was five, so all the parents I kinda talked about before that helped us navigate, you know, how do you how do you care for somebody with SMA type one? So we had like a group and they were from all over the country, you know, because there was very few of us at that time that, you know, knew each other and we're doing this, you know, protocol, which is now a standard of a care for SMA, which is, you know, the diet and the coffee machine and all that. And so there was a point when Aubrey was five and a lot of the people that helped me navigate their children were seven, but within like six months, four of them had passed away. And at that same time, Aubrey had just gotten her first real pneumonia where we had to, you know, call 911 and she was hospitalized for a while. And I think it was not long after that that four of them had passed away. And that is when like a reality really, really hit me that I didn't want to face and I didn't want to look at. And that that hit me in a way that it was really hard for me to navigate. You know, 'cause sometimes you don't wanna really face that reality and that made reality hit me in the face. Like that could have been me. That could be me. That you know, and that was really hard for me to navigate. ⁓ and of course I sought counseling during that time because it was I needed somebody to talk to ⁓ to how to handle that. And then again when Aiden was you know, ⁓ again when Aiden was diagnosed, that was another moment that I said, This is this is this is too much, you know. Cause I was like, how am I gonna hold the weight of my my daughter's diagnosis and, you know, my son who also has all these needs. Cause at that time when he was young and he ⁓ you know, first regressed, I mean he was he was like banging his head on the wall and not speaking and Not eating and just screaming most of the day. I mean I can't tell ya. I remember my husband was like, if we could just get him to stop screaming all day, that would that would be an improvement. You know. and I could remember he was like two and my neighbor would be like, ⁓ Emily, ⁓ Aiden is naked, hands in in the in the window, in the front window of the house, like like a starfish, you know, behind the blind, so everybody can see him. I'm like, Okay, yeah, thanks. You know, I mean I'm laughing about it now, but I was like, ⁓ like we couldn't keep his clothes on, you know. And so I said, How am I gonna handle this? You know, and I remember I went to a counselor and at that time too to help me navigate it, and she was just like, Why not? She told me something and I was like, Okay. And it took me a while to hit it to get it, but she was like, Why not? You have to ask yourself, Why not me? You know, why not me? So it's just kind of ⁓ you know, a different way of looking at life of like life is never gonna be I had to kind of hold this piece of like life is never gonna be easy and it's never gonna not have pain. But you just have to learn how to navigate it, right? Like the waves are gonna come, the storms are gonna come. And to think otherwise is, you know, you're just that's not reality. And so to really Think about that and and accept that took me a long time, right? To accept that that is the truth is that life is always gonna be hard in some way. You know, of course there are gonna be s calm times between storms, right? But it's kinda like I always looked at it and heard I don't remember where I heard it from, but a metaphor like you just have to learn to surf, right? Like the waves are gonna come and sometimes it's gonna be like, you know, you're just you know, on a you know a a smaller wave or you know, sometimes you're just paddling out or sometimes you're just, you know, laying on top of your board or whatever and just be in there. But then other times you're gonna have to surf a huge wave and you're gonna have to learn how to surf it or if it's gonna overwhelm you. And I just think it took me ⁓ and still I'm not saying it doesn't still overtake me sometimes, but I have to remind myself and accept that that is the truth. And I think that that helped me navigate so much more moving forward of that I have to accept that that's true. You know, and also that, you know, I I can handle it. Like I somebody once said, like, just think about a hundred percent of the things that you've you've lived through, you've survived. Like you made it, you did it. You're still here. And I was like, Well, that's kinda true, you know. I was like, I didn't think about that. Okay, cool. So think of it from that perspective. It's just kind of like when you take that perspective sh shift, then I feel like that that helped me grow in capacity of that like there's more that I can I can navigate and more that I can hold. Really accept in that perspective, I guess. I don't know. That's just what I kinda take.

speaker-0: Back to you talking about, you know, taking the step to, you know, getting therapy and getting a little bit of help. Yeah. Was it a hard process and figuring out that you were at that point where you needing it, or was it kind of like a no brainer at that point?

speaker-2: Well...

speaker-1: I mean, I think it's always I've I always think that it's good to have somebody to talk to. You know, I I have a therapist right now because right now, like another hard time of me having to navigate that transition with my kids. You know, but it did take several going through several therapists to do that. Because ⁓ and actually I'm really lucky that my therapist now that I have she has a child with a disability. So she can really it's it's and I'm not saying you have to have one like that, but at least one that will listen and be open to ⁓ you know, understanding that that you have a different perspective than maybe something that they've navigated. But, you know, it it's just something that I feel like everybody can benefit from, you know, therapy when you find the right therapist that just works with you and You feel like can hear you well. And you know, I you know, a few times, and I think when Aurelie was younger, I was also younger, of course, I kind of felt ⁓ embarrassed about it at first, saying that you need help. Yeah. To accept like I need help. You know, and that's kind of hard sometimes. But after I did it, then I was I was more like, okay, like there's nothing wrong with talking to somebody. There's nothing wrong with Having somebody with you helping you navigate hard times, you know? And then they can always bring a different perspective to you that can help you, ⁓ you know, can can lessen some of the the the difficulty. Just talking out to somebody, so helpful. Yeah. Just saying like this is what is in somebody nearing to you. Even sometimes you say, ⁓ this is so hard or or whatever it is, but somebody nearing to you, sometimes your goodness. You know, or mirroring to you that, you know, it's okay to not be okay. And helping you remind yourself and see who you are in times that maybe you get so overwhelmed that you forget that you matter and that you're you know, you need you need care too, you know, and not make you feel guilty or shame or ⁓ that you need that you need to be cared for too 'cause you you know, it's hard to care for other people when you're not caring for yourself.

speaker-0: Yeah. I think that's something a lot of parents like the main struggle is is just taking that first step, you know, like you said, of just admitting that it's okay to not be okay and to realize that you do need help because I think guilt and you know, just standing tied to therapy is something that so many of us are like, No, I'm okay. I don't I don't need to do that because it's a big deal when you do finally take that step.

speaker-1: Yeah. But I mean I think it's it's vital that, you know that we get the support that we need. And it's okay.

speaker-0: One of the things that we talked about on social media was ⁓ self-care. There's a lot of people that answered questions about ⁓ things that they do just in general for self-care that helps. ⁓ so in that regard, when people say, you know, to you or, you know, any of us as parents, you to make time for self-care. I mean, like how does that make you feel? Like what do you wish people that don't, you know, live the life that we live actually realized, you know, that statement, what it what it does to us whenever we hear it.

speaker-1: Feel like it makes you feel so un misunderstood. You know, because people don't realize you can't just to me, it makes me feel a little bit unseen, you know, that they haven't looked into how difficult it is for us to carve out time for ourselves to do some of the things you like. I mean, I I remember at the beginning with Aubrey, ⁓ when she was younger, I had you know thrown myself so much into her, I forgot. I had forgotten who I was. Like I'm like, I don't even know what I would want to do. If somebody said, ⁓ I'll come watch Aubrey for a while or whatever. I wouldn't even know what I wanted to do because I didn't even take the time to do that. And plus, people don't realize how much weight. I mean, it almost like when you say that, it puts more weight on us of like, this is something that you should be doing. And it kind of gets to the shoulds, like, ⁓ you should be doing that. But it also makes me feel so unseen. They don't understand all that goes into. For me to leave to go do something to have self-care. You know, and it just makes it feel like I'm so you know, our lives are so misunderstood of what it takes to do that and just the mom guilt that we feel too when we're like, ⁓ we're gonna take time for ourselves to do that. It takes a lot of effort. It took me a lot of years to say, tell myself it's okay to do that. Like years, years and years. ⁓ So I I think that people mean well when they say that, but I don't feel like they understand our lives of what goes through 'cause we can't just leave at a drop of a hat. We have to navigate so many things that we have to do in order to make that happen.

speaker-0: What does self care right now look like for you?

speaker-1: I ⁓ I mean I like to exercise. So I just joined Orange Theory. So that's something I'm just Yeah. So I'm like, okay, I'm getting out with other people and, you know, exercising and doing that whole thing. I do like to go for walks 'cause I'm just by myself and sometimes I do bring Aiden with me. But I like to go out, you know, for walks and ⁓ You know, I do some typical things like I'll get my nails done sometimes and I I told my husband this is like it sounds so silly, but I don't you know, whenever you get your nails done and they're like massaging your arms and massaging your feet. I'm like, somebody's caring for me. You know, 'cause they have you in that, you know, big seat and they're mess like you have the massage thing and they're, you know, people massaging your hands and your feet and you're like, Somebody is caring for me and so I feel like that, I also love to read and just take time to read a good book. ⁓ some kind of different thing that I started doing. As I started taking a hip hop class.

speaker-0: Nice.

speaker-1: Yeah, and I and I ⁓ maybe it sounds weird, but I used to dance throughout my life when I was younger, and then I was like, I think I'm gonna take this hip hop class. I haven't danced in 25 years, but let's still see if I got it, you know? But ⁓ it's it's mainly just fun and kind of reminding me of part of the parts of myself that I feel like I lost. Like, ⁓ I used to be this like kind of spunky, bun, I don't know, just that other part of me that I don't get to be a lot or haven't been able to and and it's just fun exercise too and being with other people and I don't know it's just I don't know. That's what it that's what I'm kinda doing right now. But and I love running too.

speaker-0: I'm imagining save the last dance. That's where my brain automatically goes.

speaker-1: Well not that good, but it's fun. I wish, but it's just fun. It's just more fun for me. But I do like to run too. ⁓ because that just kind of gives me like a goal. And I'm like I usually sign myself up for a race because I'm like, you have to like it makes me have to carve out time. I'm well, Emily, if you're gonna do a half marathon, like you have to do this training thing. So it gives me days that I have to run. So then I'm like, well, you have to do it. So then makes me have to plan having to plan something to do for myself.

speaker-0: Was there a time when you realized a break or a fun activity wasn't enough? You just you needed more support.

speaker-1: You know, there were just times that I was just stuck in overwhelm, you know, where I could only see like the difficulty. It's kind of like when everything just became so much of a task, you know, and I noticed that my kids even like the it was moments when I no longer was seeing myself And I just was started seeing everything and everybody as a task. You know, I would feel guilty about that, that I felt that everything was the task. And I just stopped seeing myself and my kids. And there was just too much heaviness that how I was showing up every day that was affecting other people, I guess. Like how I was showing up. How how you show up whenever you feel like somebody else is a task is a is a lot different way than you show up whenever you you know, I noticed I was just doing the things. I wasn't there. It's like I wasn't there. There's moments when I'm not there. Yeah. It's just a job. I'm not there in the moment. You know, here I am, like giving Aubrey a shower and I'm like, ⁓ You know, I'm not like here is, you know And I'm putting her lotion on or, you know, dressing her or whatever. And I'm not like, ⁓ here's the sacred body that I get to care for. Yeah. It's just like I'm just doing it. I'm just doing the motions. I'm doing the motions of everything. You know, ⁓ doing it if I'm playing a game with my kids, I'm just there. And I'm not saying that doesn't happen day to day. I'm not saying it doesn't. Some days it still happens that way. But it's whenever my overall outlook became that way. And I couldn't get myself out of it. Like going getting my nails done and going for a run wasn't gonna

speaker-0: Motions.

speaker-1: wasn't gonna get me out of that feeling. Or just so much in the gloom. Like I would think too much of gloom, you know, or I would be overwhelmed of, you know, worry of what was gonna happen. I was so overwhelmed with worry, I was ruminating. Like just sitting here ruminating and just kind of soaking in the negativity of of what could happen. What if I was too much in futuristic thinking and all of this that I just wasn't in where I was. right now, you know, and that's when I was like, okay, this is you know, this is too much. This is too much. ⁓ 'cause it's affecting other people. It's affecting me and it's affecting other people. And ⁓ you know, that's whenever I was like, Okay, this is this is more than just you need a little time off or or one night in a hotel, which I would try. I would always try that. I would try all the tricks. I would try all the things, you know, like, okay, let me do this or Like prayer or ⁓ you know, be more mindful and and and I just was overwhelmed in it.

speaker-0: Sounds like having good self awareness is also one of those things that is almost key to like just realizing, I'm in I'm in a situation that I am not gonna be able to get out of and a lot of times it's hard for us to have that self awareness because of everything that we have going on. Yeah. We're just, you know, in survival mode at that point.

speaker-1: That's true. I mean, yeah, there's a lot of lot of survival mode. Like ex not to say I'm not having survival mode now, but in the beginning, there was so much survival mode. You know, and I feel like that's something that you know moms that have been doing this a longer time really need to help moms that are in the beginning to help them navigate that you know, of this is what survival mode looks like, and this is how we can help. navigate you through this.

speaker-0: It's her program.

speaker-1: 'Cause that's so hard. Yeah, for sure. 'Cause it it's that's so hard. And it and it also is so hard because there's so much mom guilt guilt is real, you know, and you feel so guilty to admit that. You know and so that's that's so hard. And that's definitely whenever I said, Okay, I need I need to get counseling. I need to but it took it took me a while to admit that to myself.

speaker-0: Yeah. Yeah.

speaker-1: That it's har it's hard to admit to yourself. It's hard to it's hard to name it sometimes. And it and it takes a while to even be aware of it and then you know, naming it. Okay, I'm this is survival mode for too long. This is past a week. This is not a day.

speaker-0: Yeah. Yeah. So take away like the therapy aspect of asking for help. ⁓ has there been times in your life that it was hard to ask like others for help for anything and then to accept it when it was actually offered?

speaker-1: I'm yeah. Yeah. I can be controlling. So I don't sometimes I don't I don't like asking for help. I've always been that kind of person that wants to help everybody else. And that you know, I'm that helper type. I like to help other people, but admitting that I need help. You know, I remember I had a a a really awesome neighbor and she was like, I can come clean your house for you and she kept telling me that over and over. I like, I'm we're good. You know, I didn't want to accept that. She's like, Emily, you deal with so much. Like, I want to do this for you. So that's something else off your plate. And I just kept saying, No, I don't need it. But finally she's like she came to ⁓ like to my house and she's like, I got two buckets and I'm coming, you know. You know, and I've had other friends that, you know, come bring me dinner, especially when we had like harder times and

speaker-0: Yeah.

speaker-1: I was like, No, we're fine, we're fine and and they would have to they would have to come and force themselves on me a lot of times because Yeah no, really they I got a meatloaf and I have it at your door and you're gonna accept it.

speaker-0: It's gonna go in the trash. Yeah.

speaker-1: Right. And so, yeah. And then, ⁓ you know, recently, not long ago, Aubrey w was sick and one of my ⁓ family members I don't I guess you can do this now, but she sent like a whole bunch of food that she ⁓ shipped to my house. And it said like a spoonful of something. It has like a note on it that she wrote, And this is for you and Karen and all this and ⁓ I was I started of course I started crying because I was like, somebody thought of me and you know, wanted that. But sometimes it's just really hard to do that. Or have a friend that came over and was like, I'm gonna read to Aubrey for like an hour and come do art with her, and you just need to go, like, even if you just want to go take a nap and take a break and just take the mental load off and do that. But oftentimes it it is hard. Just personality wise and just it's it's hard for me to do that. I don't know about y'all, but

speaker-0: I feel like it's lip service. ⁓ can I help you? Or what can I do? Or let me do this for you. I feel like it's, you know, it's like polite society. We're like, ⁓ is there anything we can do to help? No. Okay. Then you know what I mean? It's almost like they did their due diligence. So that's that's where I get wrapped up because I'm like, how do I differentiate between those that I feel like truly, truly, truly mean it and will do something, and those who were saying it because it's it's how we're socially supposed to. to act. That's one of my stalemates with it is I just I'm like then I just say no to everyone just because I'm like because I've I've said no to you when you offered to bring me food.

speaker-1: So But I mean it 'cause I'm like I'm gonna

speaker-0: No you mean it. But that's the stubborn side of me. You know you know what I mean? So that's my struggle is

speaker-1: Well that's me too. And that's the same thing. I feel like it makes it harder for everything whenever you don't know either. Sometimes I just want somebody to ask me, Are you okay? And them actually want to know if I'm okay. Right. And the same thing about I want to help you, but they actually want to like I can take them up on it. And that's why usually they have to knock down my door and say, Here's my food or whatever. and then when Aurri just recently had pneumonia. the same thing happened. Like I'm like, ⁓ we're fine, we're fine. But then, you know, I have some people from my church is like, no, we're bringing you a book, we're bringing you some flowers. Here's some food or you know, and and accepting that and knowing that they went through the extra effort of even though I said no, they can't do it anyway. You know? But ⁓ that's really hard to accept 'cause like you said, it is I feel guilt of like, well, what if they don't mean it? And they don't they're just like you said, asking politely. Yeah. And I don't take ⁓ up on it. I don't know.

speaker-0: And then they're like, Dang it, now I have to do something

speaker-1: I wanna go cook her some food. Yeah. You know, so I don't know.

speaker-0: I do think most people really have just if they're wanting to help and everything, their intentions are so just good and that not that not that you offend them when you when you deny them, but when when they actually come to you with the spirit of wanting to help out with and is pure ⁓ genuine, you know, whenever you're like, ⁓ I don't I don't I don't need that, you know, I'm fine. ⁓ I don't know. I do think that that tha they were trying to give that to you as a gift, you know, and you're denying them to serve you whenever you say no. We spat in their face that they're gifts. Yeah.

speaker-1: That is so true though. But that is that is such a good point. That is such a good point. Because I feel like that that's so true.

speaker-0: When you are offering to do anything for somebody else, I mean you're you're going to them with with yeah, you mean it and you're going to them with this spirit of really wanting to serve because if you know, s that's that's how you are. That's how you're wired. You want to serve people. And yeah, whenever they say no, you're just kinda like, ⁓ but I was really looking forward to that.

speaker-1: That's the

speaker-0: Like another this is like another question, like just for both of y'all. Like for y'all, like what kind of support do y'all feel like will really would really make a difference? Like just in general, you know, for all of us parents out there. Like is it the the bringing the food? Is it the coming and you know, providing respite? Like in what areas do y'all feel like provides the most help or do you feel like it's different based on where you're at that week or you know, in that season with your kids? 'Cause there's a lot of people that wanna know. I have friends that have asked me, I want to help y'all, but we don't know what to do. Yeah. Then I'm like, I don't know what you can do either. I'm I you know, I'm a lost cause. So, you know, but like, what do y'all feel like for those that really want to help or some basic things that they could do that would provide help? I know just whenever all my kids were younger, I think the respite part of it was really the big thing, just having that time where I could go be with my husband, go on a date. Or, you know, do something like that and not have to worry with the kids and just where we live and everything. Sometimes that was hard to find somebody to watch the kids so that we could go do that. But it's not quite as it's not quite as hard now to because I can leave Lucy at the house for a little bit and she's fine. so and I do have a sixteen year old that can watch them as well. So Whether she she decides to. Whether she wants to or not, she can.

speaker-1: gonna say I think the respite too and somebody that would come in even beforehand and say, Okay, let me get the time to get to know your kids so that they could provide the respite. You know what I mean? Yeah. ⁓ that they could navigate and do the respite and just get to know them enough to to be able to do that. 'Cause like that's the most difficult part.

speaker-0: Some of our kiddos, some of the dynamics of some of the families and lives out there. I mean, some kiddos it is harder to, you know, to take care of than others. So that's I mean it's different. I like I like what you said about taking the time to come and actually get to know ⁓ you know. So then they feel a little bit more comfortable because, you know, I feel like a lot of people are terrified to watch, you know, a certain dynamic of special needs kid.

speaker-1: Just to get to know their personality more ⁓ and kind of what they're like and what what you know what do they need to do to navigate being able to do if they have to do a ⁓ some, you know, care or whatever care for them, but also being able to navigate what do they like to do, you know, what are some things they need to learn about Aiden or what are some things they need to learn Aubrey in or in order to give me like an hour or me and my husband an hour to go to a restaurant or something like that. So But like taking that time to get to know them is important to be able to to do that.

speaker-0: ⁓ definitely. So we d you talked a little bit earlier about, you know, how early on caregiving kinda consumed you and it changes the way you saw yourself and you, you know, kind of lost yourself into it. ⁓ have you do you feel like you've kind of come back from a l a little or do you feel like you've completely changed how you see yourself because of all you've had to do with caregiving?

speaker-1: I feel like whenever you're in a survival mode, and I saw this the other day, it's ⁓ it's like ⁓ did you survive all that you did? And it's like, no, I didn't because I completely transformed into somebody else. So and I and I feel like that's so true. I saw a quote that said that and it really stopped me. I was like, you know, that is so true. ⁓ just because you're not gonna be the same person after that. You're just not. And I think realizing that there were certain points, I think let me think. ⁓ I don't remember how old my kids were at the time, but there came a point that I realized how much I threw into caregiving and totally lost and I lost who I was so much that I felt like I had to rebuild myself because I didn't know who I was anymore. So ⁓ you know, I even went I went back to school. I got a degree in psychology after that. And I said, okay, Aiden's gonna be navigating this for the rest of his life. I'm gonna go back to psychology and go into behavior analysis and do all these things. Cause I kind of forgot who I was and that I matter. That yeah that I I can I didn't left myself I didn't let myself even have any dreams about anything. Cause it was just like this is I just need to to give to them. And then I realized like, but I matter too and I'm not doing my best job at caring for them if I'm not caring well for me. And if I don't know who I am and I lost myself in that, then the way that I'm showing up every day is affected by that. I kind of rebuilt who I was. You know, I went back to school for psychology. I started taking all kind of different courses just to navigate ⁓ what that looks like and started saying, Okay, what's some other things that I like? And I started, ⁓ I used to paint and I was, you know Did that for a long time. I started out in design and a long time ago. And I'm like, I haven't painted in like 20 years. You know? So rediscovering different parts of myself, but redeveloping it in a way that who I am now and learning that it's okay to also have dreams and goals and and that I matter too. But that took me a long time to get there. Long time. And I'm still doing it. Don't think that I got it figured out. I don't that I matter too and that I still fight myself for that. So don't think that I don't. I still have mom guilt and I still fight myself for it. But I know that I have to continue to do that and and develop that part of myself.

speaker-0: So random question, Emily, but if you could have one completely responsibility free day, what would you do with it? No kids.

speaker-1: I would do whatever I wanted for sure. I think I would I'm like, is this even an option? Can I do this?

speaker-0: It's like we don't even know how to answer this question because we know it's not gonna ever happen.

speaker-1: ⁓ Is this gonna actually happen that I could do that would be great. Okay, I am. I'm like, my birthday's coming up, so I'm like, let's make this happen. But I think I like to go to like a fancy hotel and like just go swimming and walk around. I think I would just walk around the city and just people watch and

speaker-0: Speaking into existence.

speaker-1: Let my mind wander and not have anything to do and nowhere to go and just be totally fine with that. Just I wouldn't fill my time up with a whole bunch of things. Cause I already have a whole bunch of things all the time. I think I would just like to walk and people watch and just if I see it like a exist Yeah, it just exists.

speaker-0: Like Juniper, you don't have responsibilities.

speaker-1: Exactly. Just look at the sky and look what's going on. And if I just wanna turn into this shop or this restaurant and have some coffee, I would just do it. And just walk and meander and figure out wherever it takes me and just not have a

speaker-0: that there are people out there that actually do that. I don't understand how they're capable of being able to do that. But the thing is is you removed yourself from your home because like when I think about it, I'm like, what would I do? Like at home. And you can't you can't have a time at home where you don't because they're you're gonna do laundry, you're gonna clean the dish you so like you literally have to Well yeah, I didn't say at home. That wasn't I know, but that's where my brain goes. My brain goes to if I didn't have any responsibilities

speaker-1: And I just

speaker-0: I I was not even thinking of like I'm going to another town and I'm getting away from everything and for a day doing sounds wonderful. I would get a eight-hour massage. As in your sleep. I would sleep and just have someone rub me for eight hours. That is an expensive You have a husband. He can massage you for eight hours. He does not massage that good. And I don't care if he hears this. Okay. The professional one. Does he like like when Byron would give me massages, he would just like say it in one spot. He's getting better. But like when we were first married, I'm like, can you move your move? Well, but then he tries to turn it into something else. ⁓ yes, and I'm like he does not what I need in this moment. So then it gets rushed and it's not enjoyable. Yeah. No. Not by my husband. I will spend Five hundred dollars on an eight hour massage if I have to. Yeah. So if you could give, you know, parents, maybe some that are listening, a little bit of advice who look like what they're managing is getting to be a little too much and they feel like they can't keep carrying it. What what is a word of advice or some piece of wisdom that you would say to them?

speaker-1: Finding a group of other people that are navigating something similar to you is so helpful. You know, even if you have friends, having friends that are a group that you can you know, a support group or anything that you can find that has other people that have children with disability is is so different because they can get it in a way that other people just can't get it. I feel like that's so important. Having a community around you. Even if it's just one or two people, having someone else that can listen to you on days that it's too hard and understand is so important. Yeah. So that you're not alone. So if anybody needs a friend, they can call me, you know. For real. Like I am willing to listen. ⁓ just because I know what loneliness feels like and loneliness is loneliness is just, you know, heartbreaking.

speaker-0: I'm definitely a good friend.

speaker-1: to feel have so much weight on you and feel so lonely. So I I never want any other person to feel like that. And then also just take one moment at a time, one step at a time, one moment at a time. Try to take things in bites. You know, don't look at can't look at everything at once. It's just like what's the next step you can take? What's the ne next moment? And realize that you can handle it. Yeah. Like you are enough. Even if you don't feel like it right now, even if you feel like, you know, I heard a saying of like always do your best. But doing your best doesn't mean doing your best one day means might mean I ran a marathon. I but another day might mean I got out of bed. And that was your best for that day. And realizing that doing your best day to day looks different. Basically accepting that, that you're always doing your best, that's okay.

speaker-0: Emily, thank you so much for coming on with us today. I know it might have longer than whatever. I feel like you have some amazing wisdom and there's a lot of parents that would be able to just see a little bit of themselves in you since you've, you know, kind of navigated things having, you know, a kid that might be a little bit older than some of ours. So I really appreciate you taking the time to talk. Even if I'm caring more than anyone sees, I deserve to be cared for too. We'll see you next time.

speaker-1: I like what