How to Handle More Than You Can Handle with Amanda Griffith Atkins

In this episode, we talk to Amanda Griffith Atkins about her new book How to Handle More Than You Can Handle.  

We talk about:

• how to get out of survival mode,
• what trauma does to your brain,
• how to handle the grief associated with disability,
• how to practice radical acceptance,
• and how to make meaning in your own life.

Follow Amanda on Instagram @amanda.griffith.atkins and buy her book HERE!

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Transcript

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Deonna: [00:00:00] Hey y'all. Welcome back to Raising Disabled podcast. So today we have Amanda Griffith Atkins back. We're so excited and we've talked to you in the past, but we're so excited because since we've talked to you, you have said you were gonna write a book and then you did it. And so we're super pumped. Your book is called How to Handle More Than You Can Handle, and me and Rhandyl have actually both thought about this concept a lot, just this idea and a lot of people will say like, oh, you'll never get more than you can handle.

Or God never gives you more than you can handle. But I don't really believe that to be true. I think that a lot of times we do get a lot of stuff put on us that's really hard, like way harder than we ever thought we were gonna have to face in this lifetime. And I. You cannot do it by yourself. There are things that just we try, me and Rhandyl both tried.

I'm sure you tried and Yeah. It's impossible. And [00:01:00] so this book is to me at what I took away from it, there's gonna be things thrown at you and there are systems and communities and things that can be put in place to help you handle that. And just tell us a little bit about what inspired you to start riding this and where your inspiration came from.

Amanda: Yeah, I think just to start with, when I was trying to come up with the title, I kept thinking of all those cliches that we always hear as parents. Exactly. God won't give you more than you can handle, or, kids are so resilient, they can handle anything. Just all of these cliche ideas that we get over and over as parents of kids with disabilities.

And I landed on this because it's it really, if we're being honest, all three of us and so many other people too, have reached points where it feels like this is so much more than I can handle. I cannot do this. I feel like I'm at a breaking point. And I wanted to write a book that speaks to that hopelessness and that speaks to [00:02:00] that just all of the familiar feelings that we feel as parents.

And normalizes them. But more than that, I didn't want the book to be. A hundred percent sad, right? Like I wanted there to be actual tools Yeah. That parents can walk away with tools that people can say, okay, maybe my child we're having a really hard time dealing with, the hospital right now. Or my child's getting ready for a surgery. Okay, you can turn to that actual chapter, navigating the medical system. And get a little bit of a pep talk.

And so I've been telling a lot of people, this might not be a book that you read cover to cover the first time you sit down, you might be a point in your life where you're like, I'm not ready to think about. My child in puberty or I'm not ready to think about my child as an adult. Okay, skip that chapter. Yeah, put the book away. Maybe you pull it out in a few years when you're feeling, ready for that. My hope is that this book can companion people throughout their parenting journey.

And I've said this , multiple times, but I'll say it again 'cause I love it so much. The publisher of my book [00:03:00] is the same publisher of what to Expect When You're Expecting, which I think is so cool because 

Rhandyl: Oh, I love it. What? And I heard you say that, or I read that somewhere. I was like, oh my gosh. Yeah. How ironic. That's what I think it feels like.

Deonna: Because that is the same idea.

Amanda: Exactly. It's this is, and how many of us had what to expect when you're expecting the toddler years. And I know for me with Asher, none of that applied to me. I got that book at once, somebody gave it to me when I was pregnant. And I just remember I kept looking at this book nothing in this book, my life.

That's so and so really this book is the answer to that for parents of Disabled Children, that's you know what you weren't expecting, right? How to handle more than you can handle , pull this book out at different stages throughout life. , And it's not a parenting book, right? It's not the book that's gonna teach you, , hacks for Parenting your Disabled child.

It's the book that's going to be speaking to you from wisdom about your experience as a parent, right? There's lots of books on how to attend an [00:04:00] IEP meeting or how to handle a child with medical needs, something like that. There's not a lot of books on how to navigate your emotional experience. So that you can be a healthy version of yourself as you're going through this experience. 

Deonna: Yeah. That is so cool. I love that you are comparing it to the what to expect when you're expecting 'cause Yeah, that is true. There are chapters where I was like, I'm not really ready to go into this mentally yet. I read through 'em, but it was like, oh man, I can, I can't think of this yet.

Rhandyl: Yeah. Yeah. It's funny that you said, you might not recommend re reading this book cover to cover. Because I decided to download your book on Audible, back in June. I. Took my daughter Remi. We, she had a weeks' long doctor's visits in Houston. And for me it's about a nine hour drive, from Lubbock. 

Amanda: And this was the book you chose for the road trip. Okay. 

Rhandyl: Yeah. Just so [00:05:00] I, so okay, so you, so that you know. So my mental state, I decided, so I listened to just random podcasts on the way there and had downloaded your book, while I was there. And then we had all these appointments, , some fun things in between. And then I was like, okay, I am gonna listen to. The book all the way home. And so of course I'm driving. , My husband wasn't able to go. It was just me and Remi and the nurse. And so I have my AirPods in Remi's watching movies the whole way. Like she's a great road tripper. So me being able to, , listen to an audio book , is easy on a, in theory. Yeah. In theory. Yeah. So as I'm getting into it, it highlights basically every stage from, initially. Yep. 

And so then I could relate a lot to. , The trauma and the initial [00:06:00] trauma and the feelings and all the things., And then as it goes into, like you mentioned, the puberty thing, I was like, I, it, I was not, prepared. And then, like with the relationships and then planning for the future all of that. It definitely had me in my feels for a while after listening to it, cover to cover.

But I think it was honestly, even though my emotions and just trying to take it all in it was a little overwhelming. But I also feel like now, , a month or so later, I feel like it helped me to look a little more in the future because for me, I personally, really since Remi's been born, I. Consciously live my life and my thinking process to be in the present. And , think I subconsciously don't look into the future. And, I think those, uncomfortable chapters of it helped me realize, okay, I need [00:07:00] to start planning more. , Or at least thinking about that and having those conversations with my family and my husband.

And it's, yeah. So it was definitely, I told Deonna after listening to, I was like, it was like really hard. , But it was also. Really good to, there were so many things that I hadn't thought about that you brought up. So anyway, yeah, I listen to it cover to cover, but I would recommend, , so, my plan is to, when something comes up, say probably our next phase is going to be, puberty or hospitalization. You said, I've listened to it all, but I know where to go back to help process my feelings through, those specific situations. , Yeah, so yes, I came from this week long of like bringing back, , triggers and all the things. And then I listen to your book, but I don't know, I think maybe. It sounds like it wasn't a great time, but [00:08:00] looking back now, a month after, I'm like, I think it was not a bad thing. Therapy session. It was a thing. Yeah. Something that I needed to hear.

Amanda: Yeah, it sounds like it, planted the seed. It did. And you're aware now that in the future, you know those seeds are planted, the book talks about. If your daughter starts her period, what do you do? How do you manage that? And now , it's like you have just enough information right now to be like, okay, that's happening. I have some thoughts. I have some, yeah. Some feelings about that. You don't need to have it mastered now when it happens. Sure. There's a little resource for you to go back to, at least you. Your brain is thinking about the future, which can be helpful,

Deonna: and it's like what you were talking about, , there's times where I kind of deal with things by avoiding them. Like even my brother's death I'm like, I don't like to look at pictures of him. I get very like avoiding things and that's how I am with thinking about stuff like that.

But recently we had to face the thought of her. We had to add like a child, gynecologist into the mix and things like that. And I told my husband, I was [00:09:00] like, I don't want to face this stuff right now. And Dane's like, what are you gonna do? It's coming. You have to face it. But I think with kids like ours who are medically fragile, sometimes it's tough for us to think about the future because they either will be with us and it's gonna be really hard. Or they won't be with us, and it's gonna be really hard.

So I think that Yeah, exactly. The tough, no matter what, our lives are gonna be hard. Yeah. And I think that's why me and Rhandyl avoid stuff sometimes is we're just like, oh, I don't, I can't think about this right now. Yeah. But, 

Amanda: and I hope, like the book, even when you say that, the subtext of the book all along is self-compassion. The subtext is just even what you just said there, Deonna I find myself avoiding it to just offer yourself compassion and be like of course you're avoiding it. Yeah. Yeah. That is so scary. And, you never imagine you're, finding a gynecologist for your daughter under these circumstances. This is not how any of us pictured this being, and no, just knowing that at any given time you can offer yourself compassion.

It's not okay, I [00:10:00] notice myself avoiding it. I just have to face it right now. I have no choice. It's of course I feel that way. I can take a beat. Yeah. And figure out I avoiding this? Why do I not wanna look at pictures of my brother who passed away? It's incredibly upsetting for me to do that. Yeah. And instead, and face it. Then with self-compassion, like that is sprinkled in every chapter. Everything that we're dealing with is acknowledge what you're feeling, offer yourself some self-compassion and come on, you can do it. You can do it with support, you can do it with community and you're capable of doing this. So even in the way you're explaining that, we can look back and offer self-compassion for you, yeah. Oh, for sure. For sure. 

Rhandyl: And I liked, , to quote some things that you said. In the book, it's not if parenting a disabled child will change you, it's how, and that's, a hundred percent anyone that has been through this knows, for me, I think my personality., And myself in general, it's changed a lot differently [00:11:00] over these last nine years. Like originally, after her birth and the long, 15 months hospitalization, I was so bitter. You had mentioned seeing other kiddos or friends that had children at the same time you did and getting to watch those kids, live these normal lives. And, just going to the grocery store and I'm just like, people are just buying milk and don't have a care in the world. And my. Kids on an oscillator ventilator and I don't know. Yep. If I'll be able to see her hold her ever again. I remember just being, and anytime I saw a baby,, or a pregnant person. 'Cause that's such a traumatic Yeah. Delivery. I was just like there was so much feeling of like bitterness and I don't know. So then I think I eventually, gave myself compassion for, that's why I'm feeling this way. , And then as things got better and normalized to our normal life, home, , which then, that whole situation , was very traumatic and isolating and Yeah. But , I think [00:12:00] now years into it, how it's changed me is I. I just care less about meaningless stuff. My priorities are, oh my gosh, they've dramatically changed. I definitely have a smaller circle. I had a huge circle of friends. I was extremely social, wanted to be doing stuff all the time.

And now , I'm good if I am home and my family is healthy. And, like I mentioned earlier, I live in the present. That's really how my life has definitely changed since Remi being born, is that I am consciously just living in the present and today. Yeah. Which is such a, and so it is. Also know that I should be a little more proactive on. Some things, but , like Deonna said, avoiding it, but the future, but at least I know that I'm doing that. A little scary. 

Yeah. Yeah. But what about you? , You talked about it, in your book, but how did it [00:13:00] change your personality?

Amanda: I think totally what you're saying. I can relate to where in the beginning there was such a phase of like bitterness and anger. , And I think as life has went on, I've definitely been able to move away from that a little bit. And, , just general empathy. No. Nobody's life is perfect., Everybody has struggles. Ours just look really different in a lot of ways. Yeah, I think it has definitely changed my personality. It's made me realize that bad things can happen. At the drop of the dime. And to you. Yeah, exactly. Not just everyone else in the world, but literally in my life.

Yeah, and as much as we get annoyed by people saying, oh, you're so strong, or whatever, it has taught me I am resilient,, and I can pivot and I can, handle this in a way that I think when Asher was a baby, I felt really defeated at first and felt like my life is over.

We're never gonna be okay [00:14:00] again. So yeah. All sorts of things. And like you were saying, I feel like it's just a hundred percent made me care less about, like my, I have two non-disabled kids and I'm like grades . Okay, great. They're whatever like, are you okay? Are you doing fine? Are you passing, are you living to your potential? Okay. You know what I mean? Yeah. Which I don't know if that's a good thing or a bad thing, but for the most part, there's not a lot of stuff that's gonna get me too riled up,

Rhandyl: yeah, I agree. It's funny 'cause my son's four and people are like, are you gonna put him in, this little league, in that little league? Are you gonna, oh gosh. I'm just like, I, he is living his best life riding his bike at the house playing. In the pool being a kid, I feel like those external pressures for typical kids, like if I wasn't a parent of a disabled kid, I would really probably take on those pressures and feel I need to do all these things and. In reality., It's really not that important as long as unless he cares about it. Yeah. That's the [00:15:00] thing. Yeah he's happy and so I totally, 

Deonna: I feel like it's made me care less about all the dumb stuff, like you guys are saying, oh yeah. But then care more and have my eyes more open to things like, I was so selfish. I look back and now when I notice things or see things, I care way more about people, especially in the disability community oh yeah. It's just been a huge shift.

I feel like my personality has changed the most because I used to be like. This little Disney princess. Nice girl. And it just my family always jokes around that. I used to be chef YRD, and now I'm Chef Gordon Ramsey. And it's like the truth though. It's so sad to see, it's funny, but like I look at old photos of myself and I'm like, oh my gosh. Like I used to be so nice and just friendly and non naive. Oh, totally. Naive to realities of life, yeah. And now I'm just like no. Like [00:16:00] about everything. But I I don't know. I, it is funny how it changes all of us, like in huge ways. And it's never the same. Like me and Rhandyl and you, we all change in totally different ways, I feel like, but yeah.

Rhandyl: Yeah. So you also talked about the pressure, , to be a disability warrior and the need to appease society's expectations. So give us your definition of what Disability Warrior means to you.

Amanda: Yeah. I feel like for me, early on when I first, became part of the disability parenting world, my interpretation of it was that everyone seemed really happy to be there. And everyone seemed really now that I'm in it, I'm like, I clearly I don't think that was the case, but it felt like everyone felt an identity of being like, yeah, okay, my one mission in life is to fight for my child's cause or to, be really, this is my identity. This is who I [00:17:00] am now. And I'm gonna show up at every single, fundraiser and I'm gonna be the loudest one there. . And I just early on felt so much conflict about having a disabled child that I couldn't, in good conscience be , thrilled about it, I was angry. I didn't wanna be there. I didn't want my child to have Prader Willie Syndrome. So it felt like, be such an advocate for this when it's something that I feel so conflicted about? Does that make sense? Yeah, totally. Oh, and I felt wrong saying that because it was like I should be yeah.

Rhandyl: It sounds taboo.

Amanda: That's the thing. I felt like I'm such bad mom. Yeah. I felt like how come all the other moms are, showing up with their, like I say, the orange ribbon or like, how come they're all wearing the t-shirts and stuff, and I'm just like, I don't want anything to do with this. It felt like there was something wrong with me,

but I. I was able over time to be like, this is my reaction to my process of accepting Asher's diagnosis. In the beginning, I wasn't [00:18:00] there. I still, when it comes to things like involvement in his syndrome or something like that, I do it, but I always feel a twinge of something. I never feel like I'm happy to be here. I'm happy to be there because I love the people and I love the kids and I wanna, invest in science and technology related to his diagnosis. But it's still something that to me, I'm just like, I have feelings about this, this cannot be my soul identity.

Deonna: I felt the same way 'cause I got, thrown into it. 'cause she got hurt. Yeah. So it was like, I thought, oh, this is cute. I'm gonna be in this little world for a few months. She's going to get better and I'm gonna get to leave this community. I really thought that. And I was talking to other parents whose kids were born disabled, and I, and they were all like, oh, I just celebrate my kid. I love, how they were born. And I just thought, I can't relate to this. I and this sounds so, so messed up, but it really felt that way to me. Like I couldn't get on board with it. I didn't [00:19:00] feel a part of the disability community because everybody was so happy. Their kids were disabled. That's what it felt like. Yes.

And then I realized they actually had grieved it, were sad, had accepted it. I, it was not the simple. Yes. Thing that I had in my head, but I, when I realized I was in it for the long haul, it was just like, oh my gosh, what am I gonna do? I felt huge pressure to become this person that other paralyzed, kids, parents could look up to. Right away, within less than six months. It felt that way to me because I just always put a lot of pressure on myself in every aspect of my life.

But, yeah. And it's funny that we're saying like, yeah, we don't feel pressure, but then you've written a book about it. We have a podcast about it, y'all. It's like we're all doing the opposite of what we're saying 

Amanda: but the thing is, I know I we're paid for it though. Yeah. The thing is though, we're doing it authentically, like we're not on here saying. This is the best life. And yeah. This is exactly what I would've [00:20:00] chosen. Literally in my book I say if there was a button where I could take away his disability, I would like, I know that's stigmatized and probably not what I'm supposed to be saying. But the reality is I think just in saying the hard things, we're giving people space to be like, oh yeah, I feel that too. Which then ironically, actually moves them towards acceptance and celebration, right? But it's like without this important step that we're all making space for, I don't think people can really, truly get to the happy part. Happy ish. 

Rhandyl: Yeah. I agree. And for me, with Remi, she's still undiagnosed. We have diagnosis for her airway problems, but we don't have answers for why she was born this way.. We're still working with genetics to do more testing to figure out, was this a syndrome? Did this just randomly happen in utero? And so for so long she was, and she still is this mystery to , her medical team.

And so after the, probably [00:21:00] the four year mark, , it was getting pretty obvious 'cause we'd been told so many times as she was an infant and then even early to toddler years, like, she'll eventually catch up to her peers. And I think they were looking at the known facts about her airway now, after four or five we're like, no, this is not going to happen. And it was just a accepting that she was quote unquote disabled,

For a while I was in denial. I'm like, she's just medically fragile. She's going to grow out of this. , All the groups that I was on at the time were like the trach mom groups. And it was constantly we got Decannulated and everything's good. Oh yes. And so then that was what I was looking forward to. It was just like when she wasn't going to need all this medical support. 

And then it was like when I finally came to the realization that this is our life. This is her life. We just have to make it the best we can for her, the best quality of life we can for her. [00:22:00] And that shifted my whole perspective on even the role I took as a caregiver. 'cause I felt like I was more of. Her medical team. Yeah, like a nurse and Yeah. Versus her mom. And she was my first child, so, I've, been thrown into this parenting in all medical.

And so once I finally had that mind shift to , step back, be mom, this is who she is. , We don't know what the future holds. She is disabled. And whenever I finally got that acceptance , it's not that I was happy about it and I still have those feelings of grief. I wish, the magic button, like , if she could be a typical kid, she wouldn't be who she has always been. There's always that, hope but I definitely felt the pressure in those years it just took a long time for me to get there.

But here we are, we talk about the real truth here on the podcast. And then we love your social media and everything you put out [00:23:00] there is how I feel like we feel. And then this book even highlights more. The dis something you 

Amanda: said that stuck out to me was, when you are struggling with acceptance and you're feeling like, okay, both of you guys have said it and I had a little period like at two, where it was like, okay, maybe this is just temporary. Like maybe if we do X, Y, and Z, everything will be okay. And he'll be like more on a normal trajectory. And I think during that time, so much of our focus is we gotta get him in all the therapies and I need to be doing exercises with him 24 7. He's all about doing to get your child to this other place where they're no longer disabled. Yeah. To figure.

And I think once we're able to reach a point of okay, yes, there's things that we can do in therapy that can help them, thrive and live their best life. But like at the end of the day, we will never be able to, cure brain injury or I'll never be able to fix a chromosome. You'll never be able to fix an unknown thing that's going on. Yeah. Getting to that point of acceptance can shift us out of therapist, [00:24:00] nurse, case manager, and actually shift us into mother.

Which I think there were points in all of our stories where we probably really didn't feel like a mom because we were so focused on caretaking and pushing and therapies and, doing learning exercises to try and help you be this person that you will never get to be right. Yeah, and I think that, there's so much grief in that, but also it leads us to acceptance, which actually then helps us step into our role as mom. 

Deonna: Yeah, I had a lot of people telling me, this is gonna pass, Deonna, this is gonna pass. And it is really funny because yeah, the horribly traumatic part did pass but it could come back at any moment for me or for Rhandyl or for you, so that's exactly, that's a tricky thing.

But I think when people are listening about the whole becoming a warrior thing, I think people think they have to all start foundations and they have to do this, and they have to do that. But to me, you are a disability warrior, if you love your kid and you try to do [00:25:00] what's the best for them, that's all. That's all we're doing. We are doing other things too, but, and a lot of parents are, but at the end of the day, there's days where me and Rhandyl can't do this other stuff. And you're the same. Oh yeah. You just, you and we will talk about survival mode in a minute.

But yeah, I think that you just have to release yourself from that expectation that other people are putting on you to do all these big things, because a lot of love is in the small things and things like that. Oh yeah. Yeah, for sure. You talk about grief and guilt a lot, which we've, in our episode we did with you back in the day, we talked a lot about the guilt that we go through.

And how grief and love can coexist, , they're always gonna be there together. You're not gonna get rid of grief. Probably ever. Mm-hmm. If, If you are like me, I don't think I'll ever wake up a day in my life and not feel sad about something that has happened with my daughter. It just, it's all, every [00:26:00] little thing that happens every day, I'm just like, man, this isn't supposed to be this way, but it is. Let's, I just wanted to talk about what that looks in our lives, having those two coexist together. 

Amanda: Oh, it's just constantly there. Both of them. Like you said, every day. I think we had friends over this weekend and Asher was talking to them, and I noticed myself translating he would say something and I would repeat it because he's hard to understand. And even in a little moment like that, I was like, oh, it's so sweet that he's interacting with people. And he's coming up with complete thoughts and saying things, but also , I'm sitting here translating for my 16-year-old, like

I hate this, but like sometimes people will look to me and be like, what is he saying? Even in such a small example like that, I'm so grateful that he's cognitively able to have a discussion. Yeah. But then it sucks that I have to, translate truly even just in a conversation, I feel duality of grief and love and gratitude. Oh yeah. Oh 

Rhandyl: yeah. So just one daily example that I [00:27:00] feel is bedtime routine. So bedtime routine with my son and my daughter are completely different. Remi's bedtime routine is breathing treatments, meds, you name it. All it's like hours, all these things. And then with my son, it's like we read books, we sing songs, we, do your typical kid things. And so there's this whole , love, because in both ways, for Remi, like those things have to happen.

And for her, , her good night from me as long as we have a nurse, they're doing her cares and then I crawl in the bed and tell her goodnight. Say a little prayer, maybe sing a little song, but she's usually half asleep by then. And it's just I don't know, like those kind of things tear me up. , Yep. But it's just how it is. Unfortunately, but that's just one example of. On a daily basis how 

Amanda: that's huge. Like love and you get to be a [00:28:00] comforting sweet mom with one and with the other one you, yeah, you're comforting sweet mom, but there's other people involved and there's way more needs, it sounds like different kind of needs, yeah. 

Deonna: Yeah. That's how it was. Even I went to camp with my daughter and I get to see these people loving on her and all this stuff, and it's like what you were saying. I was like, oh, this is so nice. And then at the end of every thought, I would think. I wish I wasn't here. I wish she was here alone. That's how it's supposed to be. I'm not supposed to be here. And so it was just like this back and forth all, I'm so like all over the place, rollercoaster with my thoughts every day, like I'm it's just part of it.

But yeah, the guilt, if you wanna listen to more about what we were talking about with the guilt, we'll have to link that, but we really go into that. But I don't know if dad's feel this as much as mom's probably, but oh my gosh. There's things I feel guilty about all the time, and my husband's like, why? I'm like, I don't, I just feel guilty. 

Rhandyl: Mom, guilt is real no matter what. Oh, this is, [00:29:00] oh 

Deonna: god. It's awful. It's horrible. But yeah, we did a whole episode talking about that, so yeah, we did. Yeah. And then we were talking about the, if you could push the magic button, and I forgot that I talked to you about this, and then our excerpts from our conversation ended up in the book and I totally forgot about that. And then I was reading through it and I was like, wait, there's my name. What the heck? But I forgot. I totally forgot. And then Rhandyl had told me, and then I, because I'm a dummy, I forgot again. And I was like, oh my gosh. Yeah.

Rhandyl: She was like, what did I say? 

Amanda: You were, you, did you I was excited to talk to today. 'Cause I was like, how did it feel? Seeing your story, 

Deonna: it was cool. Yeah. But it was funny. I said, what did I even say? I don't even remember. But we did talk about, if you could push the magic button, and we mentioned this a second ago, but I. I, it is really funny 'cause when we talked, when I read that back, I thought I would push the magic button and make Allie completely a normal running around kid. I, I definitely would just for her sake.[00:30:00] 

But now I have really complicated feelings about it because like for her, I want her to be able to be normal and every just do whatever she wants. But then for me, and like for my husband and for my son, we've gone through this transformation that would be really hard for me to give up now.

So it's and I'm really traumatized. I would definitely get rid of the trauma and we'll talk about that here in a second. Yeah. But it's such a conflicting feeling. I would've never known this community or, you know what I'm saying? It's just, yeah, it's a complicated feeling now, but how do y'all feel about some of that stuff?

Rhandyl: Obviously Deonna and you knew Allie before. Yeah. the injury You got to see her as a normal, typical kiddo. And for me I haven't,, but I've always dreamt of what her life would be and what kind of would've been like a child she would be , if she [00:31:00] was typical. And of course there's times where I'm like, man, I would push the magic button.

But then there's other times where it's she would not be Remi. Like she wouldn't be, wouldn't exist. Wouldn't exist either. You wouldn't. Yeah. And, I would totally different. Yeah, I would want to still have my perspective, of life, , that I have now, because I think that is so much better. Yeah. And I've learned so much through it, but, of course, I feel like , we all wish that our kids wouldn't have to go through the things that they go through. Yeah. No. On a daily basis.. 

Deonna: Yeah, my friend told me one time, I wish I could know what, you know, without going through what you've been through. And it was like this really interesting thing because you can't you cannot know what we know. Yeah, no. Without going through what we've been through.

You, we can tell you all day long. But even our nurses, me and Rhandyl talked about this, they are with us more than anyone. [00:32:00] They still don't know what it's like. Like they go home. This is not their kid at the end of the day. Yeah. It's very different. So yeah. I I know what you're saying.

Rhandyl: Rhandyl here I am a pediatric physical therapist assistant, working with this population over five years. I have treated dozens of children with cerebral palsy. Something I've always been passionate about is early intervention, standing protocols, and the importance of hip abduction. One in three children with CP will develop progressive hip dysplasia. Hip dysplasia can lead to hip dislocation, which can affect their ability to sit, stand, or walk, as well as cause pain.

Early detection and intervention with a hip surveillance program and standing in abduction may minimize the need for later procedures and improve quality of life. Zing Standers feature automatically correct hip abduction pivot points located directly in line with the pelvis. Proper offset on the leg. Supports allow for the entire leg to abduct. And with Zing Standers, [00:33:00] abduction can be used throughout its full positioning range while standing can be a positive intervention. For those at risk of hip dysplasia, it is only one part of a larger intervention plan.

Learn more at Zingstanders.com 

Yeah. To kind of transition to the trauma and what Deonna just mentioned, so when we were fun stuff in, yeah. So when we were in Houston, back in June, there's always. Triggering things while I'm there. Yeah. Yep. 'cause it, we were in that hospital for over a year. Oh God. I was there every single day. And a lot of nights and it's hard to go back. 

Oh, yeah. Yeah. And you had mentioned in the book, , the smell of the soap. Yeah. For me, one of the big triggering things at Texas Children's is the sound of the paper towel dispensers. Oh, wow. Because in the nicu, I was pumping nonstop. And you [00:34:00] sterilize the bottles and you're constantly scrubbing in, and you're constantly using those, the sound and then everyone else in the nicu. It's just constantly that sound of the paper towel holder and it's a specific brand and every once in a while, somewhere else random, that same paper towel dispenser will go off.

And I'm like and so while we're there, I made a comment, the nurse was with me, it was her first time to go to Houston with me and whenever we were washing our hands and I was like, Ugh. So triggering. And she was like, what? And I was like, the sound of this. And she was like, what do you mean, and I was like, don't really know how to explain it to you. But yeah, , there's a lot of things, even walking into this cafeteria is. Very triggering, oh, yeah. , But yeah, no one's going to understand unless they've been through it.

Deonna: The sound that triggers me at Texas Children's is I get put on hold sometimes. They play the exact same music. Every morning when we would order her [00:35:00] food or whatever, you would get put on hold for probably 10 minutes or something, and it would play that song. I got put on hold the other day. I wasn't even in Houston, I was in my house. But I heard that same track and I seriously felt like I was gonna have a panic attack just hearing this stupid music. It's like me and you and Rhandyl have thousands of triggers, probably. Exactly. Not just one or two. It's a lot. Yeah.

Rhandyl: That's just a few examples. 

Amanda: Yeah. And that was like such a fun part to write in the book, honestly, because, I did some research on trauma and like how trauma impacts our brain why is it that even though you're not at the hospital, you're in the safety of your home, everything's okay. Why is it that as soon as you hear that song, your body thinks that you're back in that, and there that there's some very real reasons why that happens and it's pretty interesting to study trauma and learn that. 

Rhandyl: Yeah. And I was gonna bring that up because because you're a licensed therapist, so your insight to trauma and why we have these trauma responses was so awesome [00:36:00] to listen to you talk through that. 'Cause a lot of us are like, , we have this, but we don't understand the why. And , you. Said trauma is not what happens to you, it was what happens inside of you. Exactly. So do, if you wanna explain that a little bit. 

Amanda: Yeah. So the interesting thing about the way that our brain holds traumatic memories and, , traumatic memory can mean anything, right? We, in the therapy world, we talk about capital T traumas versus lower T traumas, right?

And an example of a capital T trauma would be like, , getting in a really bad car accident or something like that, something that's obvious. A lowercase t trauma might be like feeling like your parents neglected you, and maybe there wasn't like actual abuse or neglect, but this experience of it and these kind of like narratives that you shape around it.

, And so the way that our brain holds traumatic memories is in the part of the brain that is actually here and now. Old memories are held in a different part of our brain. And so when we have a trigger come up that [00:37:00] makes us think of a traumatic memory, let's say Deonna, like maybe the moment the Allie fell off the couch and it's held Yeah. So vividly in your head, , when your brain is provoked and that memory is brought up, your body feels like you're in the present moment, not in the past. Yeah. Yeah. And the book kind of goes into like details around that. It does. Yeah. And so that's why, again, to go back to our theme of self-compassion, when you notice your heart rate speeding up, or you're like, why am I feeling so out of control? I'm sitting in my house, I'm on hold, I know this is happening. You can remind yourself, oh my gosh, my brain in this moment feels like I'm sitting in the hospital again that many years ago let me reorient myself to the here and now. I'm safe. My child is safe right now. Let me just get my brain, my kind of like lizard brain into the here and now and remind myself that I'm safe. So our brains really store traumatic memories in a different way than we store non-traumatic memories. 

Deonna: Yeah. That's so interesting. I believe it. [00:38:00] 

Rhandyl: Yeah. It makes sense. I think our brains try to push them away, so compared to obviously our positive memories, . That we want to think about. Yeah. I like the way that you explain it. , It helps at least for me to , understand and comprehend, why we have these, all of the sudden triggers that bring these things up and it feels like they come out of nowhere, but. They're coming from a different area in our brain that's hidden and then boom.

Amanda: It's also a survival skill, yeah. Your brain is like, Hey, this really freaked us out last time it happened, so we're gonna make sure that you're safe this time. So we're on overdrive. As soon as I hear that song, I remember where we were. I remember what was going on with my daughter. , I'm gonna kick it into gear and nothing bad's gonna happen 'cause I'm all over this. You like our silly brains are just trying to protect us from feeling bad. 

Deonna: They're the worst. Yeah.

Amanda: They're truly the worst. They haven't quite caught up.

Deonna: And it's really interesting 'cause we've talked to so many parents and when you talk to [00:39:00] them about when they found out that their kid was going to be disabled forever, for the most part they all have these, I always feel bad 'cause we're basically forcing them to revisit what I know to be, I. A really traumatic memory that could ruin their whole day. There's times where I'll go back and think about stuff and it's hard for me to even continue on for a few hours. Like I really am, like, I'm okay right now. I'm okay right now. I'll say the same mantras over and stuff like that.

But it's, I used to think PTSD and trauma were reserved for people on the battlefield, but it's really not like that. There's a lot You're on the battlefield. We're, yeah. It's a little different, but . It is interesting 'cause I used to think people were being like dramatic and stuff, and now I'm realizing it's, that's not the case. This stuff is really hard to work through

Rhandyl: yeah. Yeah. And you talked a lot about radical acceptance and I liked this theory. And it's making a conscious decision [00:40:00] to accept the parts of our lives that. We are not in control of. And if you wanna go into your definition of radical acceptance, 'cause I don't wanna mess it up, but whenever you explained it, it was an aha moment for me's so I definitely encourage all of the listeners , if you take anything out of the book for sure. Is this radical acceptance theory. 

Amanda: Yeah. So basically the example that I give in the book is if you're going to a doctor's appointment or anything and you're late, right? We've all been in that situation. You're, you're supposed to be there at 10. It's now. 9 58 and you're at least 20 minutes away. That's like such a panic feeling where you're like, traffic's bad. Oh my gosh, what do I do? So ever since I wrote the book, I've really been trying to embrace concept of radical acceptance.

So we think of radical acceptance. When you first hear of it, you think of it being, okay, I accept I'm gonna be late for my appointment and everything's okay, and I just need to feel good about it. Yeah. That is not radical [00:41:00] acceptance. Radical acceptance is being like, shit, I'm gonna be late for this appointment. I've, I've been waiting for this appointment for six months. Why did I leave the house so late? I should know better than this. But you just say, alright, I'm a little panicky right now and I'm gonna be late to this appointment. Yeah. There's nothing I can do about it right now. I'm going to just calm my body down. Yes, I'm feeling upset. Yes, I'm feeling a little bit panicky. I'm gonna put on some calming music and I'm gonna be late to the appointment. So what can I do? What's within my control? I can call the front desk and let them know and see if they can accommodate.

And if they can't accommodate, yeah, I'm gonna turn around and go home and I'm gonna reschedule the appointment and I'm gonna be really annoyed about it, but it's okay. This is out of my control, so it's like, yeah. It's basically accepting your reality and all of the feelings that come with it and understanding what's within your control. This sounds like such a simple concept. It is so challenging. It is. It is. Because all of our protective parts kick in and all of our emotions kick in the moment [00:42:00] and all of our shame oh my gosh, I'm such an idiot. Why did I stop to get that coffee? I knew I was gonna be like, I should have never done this. I do this every single time. That is not helpful, just being like. Okay. Yes. I shouldn't have stopped and got the coffee Next time. I'm gonna try and do better, right? Yeah. Because the way that we talk to ourselves really does matter. And it's crazy. Like when we're in a stressful situation, our brains are like rapid firing, self-judgment. Anxiety, stress, none of this stuff. That is really helpful. And if we can just be like, okay, , I have to cancel this appointment. Yes, this was a big deal. I'm gonna get on a wait list. It is what it's what it is. Yeah. What more can I do, yeah. 

Deonna: , You talked about this back in the day with us about how when we are trying to control things, that's when we start to get guilty because we like to feel guilty. 'Cause it makes us feel like we're in control of the whole world. Yes. But really there's no need for the guilt because, honestly, for us. 90% of the things that happened with Allie and stuff, like we couldn't [00:43:00] control it. Yeah. It happened. Like she got sick. This happened whatever, like last night I messed up and we didn't have nursing, but I messed up and just got the water that was supposed to go in her tummy everywhere. And then I woke up and was like, oh no, now she's behind on fluids, and was like freaking out.

And then I just thought, she'll catch up. It's fine. Move on. I just have a big old mess to clean up now, but yeah. Yeah. It's, I always get really anxious with myself because I think I'm oldest daughter, I think I'm in control of everything and yeah. That's all one for me because of birth order. I'm like, oh my gosh, I know I'm not in control of anything. 

Rhandyl: I feel the same way. I'm the oldest too and I want everything to go my way, the way that I like it. Yeah. And I had to learn to let go a lot with nursing. Like. Day-to-day things that just had to think, okay, this is what it is and we fixed it now and we'll just deal with the consequences as they [00:44:00] come. Yeah. But it's hard to do. But it's gotten easier for sure. The radical acceptance, but

Deonna: I like that concept. Yeah, me too. I'm gonna start trying to be that way hard. I know we need to get tattoos of it or something, because otherwise I'm not gonna be able. Yeah. 

Amanda: And the goal is not to avoid hard feelings. That's not the goal. The goal is to just, no. Let go of what's outta your control and cope with what comes your way,

Deonna: Yeah. No, that's so true. Okay. So now we're gonna talk about survival mode because we've all been in that. That mode at some point in our life. Some live in it forever. Some choose to move out of that. And I feel like it is a choice because I could still be in that 2020 trauma survival mode. I lived in it for about a year just because there was no other option it felt like at the time.

But we have chosen to go out of it and work really hard. It's a lot of work to get out of [00:45:00] that mode, I feel like. But you said something, and I've seen this before on some other things about how . Our brain just has one goal and that's survival. Like our brain doesn't care if we're calm or peaceful or happy or anything. It does not care. It's like a super primal thing. Like we just are supposed to stay alive. It's a caveman type thing, I feel like. Mm-hmm. and how do you think that understanding that helps us cope better as parents of disabled kids? 

Amanda: I think, survival mode, it is necessary. That's the thing. Yeah, there are points where it's like my number one goal right now needs to be to keep myself alive and do what I can to keep my child alive. But I think the thing is when we're stuck in that like hypervigilant state, which it does become a stuckness. You become used to lack of sleep and lack of taking care of yourself and just constantly feeling frantic. I know for me, there were years where. I would feel like if I was sitting down in a quiet moment, I [00:46:00] would be like, what am I missing right now? Something's going on. I need to be paying attention to something I know. Yes.

And eventually I realized that I was feeling that way. I was like, why is it that every time I have a minute to myself, my brain is like, what could go wrong? And it was like of course i'm feeling that way. I've had to live this way for a couple of years here. But when life actually settled down enough for me to be like, okay, I don't have to exist in this state anymore. It took some self understanding to be like, okay, I need to physiologically work on calming my body down. And try to recognize what it is that I'm feeling and try to be more self-aware that in this moment I'm feeling frantic and there's no real reason for me to be feeling frantic, it takes a long time to get to that point, because like I said, so many of us are , in literal crisis survival mode. For a long time that is the reality for many people.

Deonna: I remember Rhandyl telling me we talked at the very beginning, and I said something to her, I can't remember what it was, but I basically said when am I gonna feel okay or [00:47:00] something? And I remember Rhandyl's like, it can take years to feel okay. And I just was like, oh my gosh. What? But it was very true. Like 2020 was horrible. 2021 was horrible in 2022, I thought, Hey, we're gonna be all right. And then my brother died and it became horrible. So it's just it was such a long. Journey out of that, but and we're still hypervigilant, I feel one of us will sit down and we'll be like, oh wait, I forgot to do this, and you'll jump up. And it's so annoying. We both absolutely hate that about ourselves, yeah. But it's also that much work for our kids, especially. 

Amanda: Yeah. Obviously I think that's, in the ways that we change too, is like we do become hypervigilant in a way that is a necessary skill, unfortunately, yeah. 

Rhandyl: Yeah. It has to be. Yeah. We have to be. But I feel like after a while, the survival mode, it comes and goes. You're not just stuck in it anymore. Yeah. Hopefully, like for me, I was in survival mode for, , oh my [00:48:00] goodness. The first year after Remi was discharged from the hospital. I feel like that was definitely the hardest time.

I was, 'cause I was alone. We had Yeah, nursing, but like I was the one teaching them everything and I didn't leave the house for three months. I was in such survival mode. I was not showering, I was not taking care of myself. Zombie legitimate 

Amanda: survival mode. You really needed to, you needed to be in it, it sounds yeah. 

Rhandyl: Yeah. And then, it got better. We got a good team, a good village. , Years later whenever my son was born. All of the sudden this survival mode kicked back in. And I don't know what it was, but then I went through this whole thing again where I was in like crazy insomnia, for the first year of his life and just total survival mode anxiety.

And at that point and you had mentioned this in, the book, but at that point is [00:49:00] when I finally talked to my doctor and was able to get on, some medications to help me, oh yeah. With that. And that helped a lot. But I still have moments especially with a really bad health issue or an emergency situation, you just get right back. It's just so easy to just get right back into survival mode. , But it is very important to. Find ways to help climb out of that mode because yes, physically, obviously, emotionally, but it takes such a huge toll on our bodies. And so 

Deonna: yeah. You talk about, you talk about deserving to function out of survival modes, so what would you say are the first steps to realizing you're in that and trying to come out of that?

Amanda: Yeah. One thing I was thinking about Rhandyl as you were talking is like, how do we identify when we're in survival mode? Because I think the thing is so much of us don't know when we're in it because it just becomes like our state of e existence. [00:50:00] Yeah. It's like you said, am I showering enough? Am I am truly like, am I doing my, am I brushing my teeth? Am I getting dressed or am I just staying in my yoga pants? I'm literally in yoga pants right now. Yeah. You know what I mean? Me too. Am I, Am I changing my clothes? Giving the normal attention to my appearance that I normally do? Am I eating like a vegetable once in a while? Am I eating, going outside at all? Yeah. Am I going outside? Am I going for walks? Am I tending to myself the way that I would want to tend for my child? Am I caring for myself? And if the answer to those things is consistently no. For like days on end Yeah. You're probably in survival mode. And so then it's okay, what's your capacity for self-care right now? Can you make yourself a meal? If not, can you ask someone to make yourself a meal? Can you go for a walk outside? , Realistically, can you do that and things be okay? Probably yes. Probably yes. Yeah. If you have a single support person, so just really thinking about what is the bare minimum that I need to be doing? Can I access that?

If I can access that, can I [00:51:00] take it one step further? Can I move my body today? Can I do something that maybe actually , brings me joy and is a little frivolous and not required? Can I get a manicure? Can I, schedule an appoint with a therapist? Does that feel totally overwhelming? Or is that something that I can access today? Can I pick up the phone and call an old friend? Can I read a book? Like one step further? What can I do to. Rediscover myself as not just a caretaker in crisis, but as a human being. That's like actually allowed to live a life and go after my own passions and joys.

And I say this in the book, but it's shocking how many moms I meet with and I say, what brings you joy? And they say, I have no idea. Yeah, I haven't thought about that question in years. It brings me joy when I see my child happy. Okay, let's go one step further. What's something not related to your child? Yeah. Or the caretaking that brings you joy. And it is really shocking. Really shocking how many moms are like, I honestly don't know how to answer that question anymore. We should have the [00:52:00] answer to that question. 

Deonna: Yeah, you should. 

Amanda: Yeah. Those some things that bring us joy. 

Deonna: And it's tough ' i'm really into a lot of hobbies. While when Allie got hurt, I didn't wanna do any of those things. That made me happy because I didn't wanna associate anything I liked with the worst time of my life. And then when we got out of that, it made me feel stupid. 'cause I'm like, that could have maybe helped me get through it, but I was just avoiding it. Yeah.

But now I, even the other day I was doing something, I can't remember what I was doing and my son was like mom, and I said, Cole, I am doing this. Right now for me, and y I don't care if you understand it, but like I have to do stuff for myself. If I don't, I'm not gonna be a good mom. Like I'm just not because 

Amanda: such, such a good model for him to see. 

Deonna: But it was, but he was just like, what? Like you're doing something like why aren't you making me lunch? And it was, oh my gosh. But it is, I think that's true with any mom really. Yes, definitely. I think a lot of us lose [00:53:00] ourselves and our kids, but I know a lot of moms who've completely lost their entire identity into their disabled kid. And then what if something happens, you have nothing left. Yes. Like you're, that's it. You only had your kid and that's it. So yeah. It's super important.

But I do think I feel like when I'm in survival mode, like it's like I've dug a hole and I'm down in there I. You don't just hop out it does take, okay, I'm gonna go get a coffee for 20 minutes. I'm gonna do this. It's small little stair steps up to back to the light, but it's, it doesn't happen in one day. That's right. That's for sure. It's baby steps. That's right. You talk about regulating your nervous system, which I didn't really even know what that was until I got into somatic exercises.

And realized that my nervous system was just totally on high alert. Oh yeah. In, freak out mode all the time. And then I started doing these things and it started to take the edge [00:54:00] off a little bit. But what is something that you recommend, like one thing you recommend that you do or that you've noticed your patients having success with? Because there's so many. Different ways to reset your nervous system. Like I've started icing my face. I do all these random, that actually hurts, but I do it. But because I read where, I mean we take this knowledge from like Pinterest and places,

Like I read that it can help reset if you're freaking out and Yeah, I don't know. I, the, I just started it, so I'll report back on whether that works or not, but it's good to understand, right? So I feel like there's nothing else. Yes, it's, it is.

But what's something you recommend do for parents who just feel very on high alert all the time? I. 

Amanda: For me, it's like such a generic answer, but I would say any form of exercise, like literally getting outside, like the sun is shining today. I was outside a little bit this morning and like for me, nature is such a calming forest in my life and just being outside in the sun [00:55:00] with the trees and just even like seeing people out and about and reminding myself that , life is bigger than just me and my problems. Like sometimes that is such a helpful reset.

Oh, to just see people and be like, oh wow. Their lives are complex too, and they're struggling. I'm not the only person struggling. Something about that brings me comfort, but exercise, getting outside. 'cause for me, if I'm like on a treadmill or if I'm like, in an exercise class or something that is like mindfulness for me, that forces me to be in the here and now. Which for me can be really hard when I'm like, when. Feeling anxiety or feeling heightened stress. So I think that kind of thing is a huge nervous system. System reset for me for sure. Because it's like finding safety in the present moment. Reminding myself that I am here in the present moment. I don't have to be totally obsessing about everything at home. I'm able to take a minute to care for myself.

So for me, exercise is the biggest way I feel like I can calm my nervous system. Which is interesting because I'm always with clients that are like into high cardio stuff. I'm like, is [00:56:00] that what's best for your nervous system? Yeah. Maybe just isn't working for us. Yeah. So I do think that we need coping skills that also center us and bring our heart rates down, our blood pressure down. I think that's really important too. So I'm also a big fan of just sitting in bed. 

Deonna: Yeah. Yeah. 

Amanda: That's the best coping skill. But I do love it, spending time, you're like with the lights off. No, like dim quiet room for me is like the place to be. That's funny, I don't know. What do you guys, is there anything that you do like intentionally for that? 

Deonna: I go stand outside with my shoes off and yes, sit there for a bit. And the part you said too, I just wanna bring up , when Rhandyl was talking about this earlier, like in the grocery store, when you were saying, Rhandyl, you wish people knew what was going on with you. I remember being in HEB with Cole back in the day, and I do think this is really good for me sometimes, like what you were saying with people watching and seeing other people, because I think sometimes I'm the only person in the world who [00:57:00] has any problems.

And I remember being in HEB, which is a grocery store here with Cole when we were in Houston. And I said, I just wish I had this big sign over my head that says my whole life is falling apart. Because I just wanted everyone to know. It was like, I. It was a weird feeling back then. I don't know why I felt that way. I said, I wish everyone had a sign. He said, yeah, but what would their say? You don't know.

He was only seven at the time. It's like mm-hmm. he said so many crazy things. It is true. I think it's even grounding sometimes just to talk to someone else. And even within our little friend group or something and be like, okay, I am having a hard week. But so are they, like it's not just all about me, I think that helps me a lot too. What about you, Rhandyl? 

Rhandyl: Yeah. Similar to your work, Amanda, you talked to families? In similar situations to ours and I work with mostly my patient clientele is, chronically disabled kiddos. And yeah. I'm [00:58:00] reminded, on a daily basis that I am not alone. And , my work definitely helps ground me and keep me in that realistic mindset.

But I'm all about the vitamin D and trying to be outside, , and have my kids outside as much we can. , And I definitely notice, like in the winter months that my, oh, that anxiety, depression increases just because , there's less sunlight during the day. And, very conscious of that. And I've never thought about that before. The last nine years, I never really thought about the seasonal changes, but it is so true and so true. Exercise used to be like my go-to. I was like just avid and that was what really helped me, self-regulate and my sanity

but it's funny, there's a couple of factors where my intense workout programs stopped, for example when we [00:59:00] started this podcast, it's therapeutic, , for me plus, , also my, medications that I take for my mental health. Yeah. I feel like I'm not as motivated for my high intensity exercise programs as I used to be. I wish that I was because I don't always feel as great physically as I did then, but I don't know, they've just shifted, like the things that I do shift throughout the years.

Amanda: That high intensity also might not be as good for you anymore. Just like when we're living in high stress, high intensity workouts sometimes are not, like when you're doing a workout that boosts your cortisol, your heart rate, your blood pressure, and you have a really high stress life, that probably isn't the best exercise for you. Truly. Yeah. 

Deonna: Low, more low impact stuff. Exactly. 

Rhandyl: So to transition in the book, there's a really good chunk about relationships and that's, from friends to marriage to the siblings of the disabled children. I really loved all of those things. Yeah, me too. [01:00:00] I loved the examples you gave of the different roles that we as caregivers take in our marriages.

And Amanda also had this research, , that disproves the things that we've heard so often about divorce rates and couples with disabled kids and long hospitalizations, which I thought was really neat. So definitely, if you're interested in that totally, go to that chapter and then the sibling thing.

Oh man. , We've talked to a sibling and it was one of our best episodes. I loved that episode and you wanna talk to more? It was hard, but we would love to talk to more. Yeah. And I love that perspective and my son's young and I'm consciously Oh yeah. Trying to make sure that there's not the whole Glass Child syndrome, which you talk about. But one of the big things for me, , like I said in the beginning of this episode, was how I live in the present and like thinking about future things. So for me, , Remi is almost nine, [01:01:00] and to be honest, I didn't think she would live this long. If I'm being completely honest. Yeah. And so I didn't really prioritize the whole future planning. . For a long time. And now it's okay, like we need to figure this out. Yeah.

And so that whole part of the book was really helpful for me to try to get my ducks in a row and start planning for that. And figuring out, , if something does happen, to myself and my husband, what's going to happen with Remi? , Because, and that's so scary for all of us to think about. It's something that we avoid a lot of caregivers avoid, but, and I have avoided forever. And now I'm processing that in a way that I really hadn't before the older she gets. Okay, she's outliving, all expectations that we ever had. Expectations. Yeah. And that was a great,. Thing to listen to. A hard thing for me to listen to. Yeah. But something that made me more aware

Amanda: I love that. And honestly, when I was writing the book, I never even imagined that being a possibility. Someone reading the book and being like, [01:02:00] oh, I haven't thought about the future. I should do it. That was totally not my intent in writing that. And there you go. I love that. I love hearing that. That makes me so happy. 

Deonna: Yeah. There's a lot of good relationship advice from a million different angles, yeah. Yeah. I appreciated that you went there. 'cause it's hard. As we close up today you talk about how you need to make meaning and you were talking about David Kessler, which me and my mom and dad are obsessed with David Kessler after I. After my brother died, my mom sent me a lot of his videos and I was like, who is this guy?

I didn't know who he was, but he basically is a grief expert because he's lost several people but he has great insights. If you ever wanna look into his stuff um, amazing. You can follow him on Instagram. He has great videos. But making meaning after Loss, and I appreciate that idea because like we were saying, you feel like you have to become this disability warrior like in our circle, you have to start the Christopher Reese [01:03:00] Foundation or something. You don't all have to go down that path and do that but you can make some meaning. And I feel like we all three have done that in different ways. But when did you start to feel like meaning was happening with Asher?

Amanda: For me, it took me a really long time. Like , when I started my Instagram and I realized, oh, I can find meaning. Through connecting, , using what I'm good at, which is like identifying emotions and working through them. Yeah. Oh, I can't, I don't have to be, for some reason I keep going back to going to fundraisers and Yeah. Marching know what the streets and stuff. That's what advocacy looked like to me in my head. And I'm like, it totally. Yeah.

But for me it's been connecting to other parents about their experience and helping them find some sense of peace and acceptance in their journey. Form of like denial and avoidance, but like through facing it head on and Yeah. Processing it to become like more whole people.

And so when I started my Instagram and I realized , okay, I could just post what I'm feeling and [01:04:00] other people would be like, oh my gosh, I'm feeling that too. It's whoa, I don't have to become somebody else. I can find meaning in this journey by embracing who I am and my own strengths. And so yeah, once I started doing that I was like, I love this. This is just what I'm good at, and it comes really natural. 

Deonna: Yeah, I think God gives us all different gifts and it, none of us are gonna handle this the same way, and we're all gonna make meaning in our own unique way. And you don't have to become somebody else. You can do it your way. And it's, yeah, but I do like that idea as opposed to becoming, like we were saying, the disability warrior.

Like you can just, even if you encourage one other parent, your whole experience, it was worth something because you helped somebody else go through what you might have needed back in the day . I like the quote to finish up where you just said, take care of yourself. You owe it to yourself. And it's so true. And we are all trying to do that. And I think you [01:05:00] give people permission to take care of theirselves because sometimes we feel like we only, I. Need to take care of our kids, and that's our entire worth.

But yes, if you can't take care of yourself, you can't take care of anybody else. And exactly. Yeah. Yeah we really appreciate everything you said in the book, and I think it's gonna be, a lifelong, step-by-step guide through some of these hard things. And yeah I'm excited for people to read this and to get, I. A little insight from a therapist because it's just, it's great advice. 

Rhandyl: Yeah. A therapist that's lived it and I guess that I listened on Audible and I thought it was really cool that you did , your own audio. 

Amanda: Thank you. That was such a crazy experience. It was so cool. But yeah. Did you 

Deonna: thought you could read, but now I would have so much of a hard time reading my own stuff.

Amanda: Yeah. I had to audition for it. They told me that No, you did not. Yeah. That , my agent was like, just so you know, they usually don't give it to first time, [01:06:00] authors, but you should go ahead. What? Obviously if Oprah Winfrey writes a book, she's doing her audiobook guaranteed me different story, so I was, I had to like audition and read a chapter and I thought for sure I didn't hear back. I didn't hear back. I'm like, okay, obviously I didn't get it. And then my agent like, you got the audio book. I'm like, what? So I flew to New York and . Recorded the audio book. It was such a fun, what bizarre experience to just sit there for three days and read your books, start to finish. 

Deonna: It would've been so weird hearing somebody else's voice. Read your word. 

Amanda: That was weird. I say there was like a little thing with anything else that you want, them to know. And I was like, I really love my followers. And I think that they would like, my community is my community and I think it'd be cool like if I was reading the book, so I don't know. Something. I love it. 

Deonna: Yeah. You're the Oprah of this community, so you got to read your own book. Whether 

Amanda: the Oprah of the disability parenting community. 

Deonna: Yeah. That's your new tagline. Oh my gosh. Thank you so much for talking to us today. Thank you. Those are the [01:07:00] best. Always. So refreshing. We're very excited for you. 

Rhandyl: Yes, thank you. Definitely put all the links and how to buy, purchase. Listen to Amanda's book, How to Handle More Than You Can Handle. Thanks Amanda. 

Amanda: Thank you.

**Disclaimer

Before we go, I wanna remind our listeners that this podcast is for the purpose of education and entertainment only, and is not a replacement for seeing a doctor. We suggest you seek out the help of a trained professional for help with your child's specific situation.