Ep. 79: Debilitating Guilt + the ‘You Break It, You Fix It’ Mentality w/ Wendy Hair

Episode Transcript

Wendy Hair  0:00 

I just remember the intensity of, I've got to fix this. I've got to fix him. This can't be happening. I've got to fix Ammon, my body broke him, so I need to fix them.

 

Madeline Cheney  0:18 

Hey, you're listening to The Rare Life. I'm your host Madeline Cheney. Today I am thrilled to give you Wendy Hair's special topic episode all about guilt, and shame regarding our disabled children. I feel like there are so many angles on this topic because it is so important and multifaceted. So way back, Episode 22, was a solo episode, all about the guilt and shame I was experiencing. After finding out I gave Kimball his faulty gene that caused his genic syndrome. And my brain was yelling at me ruthlessly that I caused his suffering. More specifically, that one hit home for a lot of other carrier parents, which makes sense. But also hit home for several of you that didn't necessarily pass the gene on to your child, but for whom you feel responsible in other ways. And Wendy was one of those parents. One night she sent me a text because I know her personally after she listened to it, and she described the impact it had on her. And honestly, it was one of the most powerful messages I've gotten from a listener about the podcast, it was a really cool experience for me. So it would only be appropriate for us to dig into the guilt and shame she has experienced and grappled with while raising her 15 year old son Ammon for today's episode. In this episode, she shares the debilitating guilt and shame that she experienced as a young mom, and how she's been able to navigate those really tough emotions and actually change that into a really healthy relationship with her guilt and shame, which I think is really cool. I'm just so excited for you to listen to this and to feel seen and validated for whatever difficult emotions you feel in those dark, protected places of your heart. Every experience any emotion is so valid.

 

Madeline Cheney  2:34 

 Alright, let's dive in. Hi, Wendy, welcome to the show.

 

Wendy Hair  2:38 

Oh, hi, thank you. I'm such a fan of this podcast. It has tremendously blessed my life. So, thank you.

 

Madeline Cheney  2:47 

Aw I'm so happy to hear that, it makes me really happy. So I'm really excited to dig into your special topic episode all about guilt and shame. Because those are definitely things I think that everyone in this community has felt in different degrees. And so, you know, I just think it'll really resonate with a lot of people and I'm excited to dig in. So when we were chatting beforehand, we kind of like, I don't know, I guess homed in on two different like sources of the guilt that you have felt. And one was feeling like you caused Ammon's disabilities, and also feeling the pressure to do it all. Because, you know, as we all know, between therapies and appointments of all kinds, and just everything, like we just have so much asked of us. And I don't think we really can do it all. And so I think everyone feels that guilt for not doing it out, because we can't. So I also think these are really intertwined. Because I think, you know, as you mentioned previously, that feeling like you caused the disability can intensify this need that you feel to like, fix it or to do it all. And so I just think that they play off of each other a lot, too. I would love to hear your first memory of experiencing this guilt or the shame.

 

Wendy Hair  4:16 

Yes, I just remember especially his first year when I noticed that he wasn't developing, like typical babies do. And I just had this flood of during the day, especially I would just think about my pregnancy where I may have messed up, you know, I painted a room or I, you know, wear myself out or, you know, there was just so many things that I was trying to like, it was like I was trying to figure out how this could have gone wrong. How could I have let this happen or just trying to figure out where I misstepped and blaming myself for anything that I even thought of a memory that would come up, we moved during my pregnancy and we were remodeling a home. And why would we do that? You know, I mean, it was just so many things. It was like a burning guilt. I mean, it was so intense. That's the only way I can describe it, like a intense burning guilt, because, you know, just waking up to him every day, and then seeing every single day, just the lack of progression and the startling realizations of what we were facing and becoming more and more apparent every day. And so it just kept intensifying. You know, as he wasn't progressing, my guilt was progressing, if that makes sense.

 

Madeline Cheney  5:58 

Yeah. If you're like owning everything, if you're owning all the things that are, are happening, then like, that totally makes sense that that guilt is gonna be accompanying every new diagnosis or new discovery like, oh, and I caused this and oh, and I caused this.

 

Wendy Hair  6:14 

Exactly. And then with guilt, it's inferred we've done something wrong and that there's restitution that needs to be made to make up for what we did wrong. And so I just remember just, of course, wanting to help my child and of course, wanting to find out answers, but also the intensity of, I've got to fix this. I've got to fix him. This can't be happening. You know, I've got to fix Ammon, my body broke him. So I need to fix him. Which sounds completely irrational.

 

Madeline Cheney  6:58 

No, but I totally get what you're saying. And I again, I think most people have felt this before. I do think that there's like a lot of like, like, when looking back at these emotions, a lot of people will talk about how they feel guilty talking about, you know, feeling guilty, like whatever I feeling guilty, like talking about our children's disabilities and stuff in that way of like the in the way that we experienced it in the early days. Because you know, then, like you talked about in the first episode, like you evolved to like, recognize, like, oh, no, this is just Ammon, and you know, he's doing things at his own pace. But it's really important to emphasize that all of these feelings are so valid, like feeling like he was broken and feeling like you broke him. Just because you've evolved from that now, does it make how you felt then invalid or bad or make you a bad mom? Or you know, any of that?

 

Wendy Hair  7:50 

Yeah, I agree. I mean, I look at it like that is such a huge part of our story. And that's what makes the part of our story now even more beautiful. That's where we were.

 

Madeline Cheney  8:11 

Yeah, I totally agree with that. But yeah, like, I think, when people try to logical way, you know, those emotions, like guilt, because they're really illogical most times. I don't know. Like, I've often felt protective of my guilt, which sounds strange. But just to be like, it feels so real. I think it just feels so real in that moment. And so it's like, no, you can't disqualify what I'm feeling like, this is my reality right now. And I need to process through this. Like, there's no other way you can't logic it away, you have to process through it.

 

Wendy Hair  8:47 

I absolutely agree. I think about myself during those years, and just think, how many people of my loved ones would say, "oh, you know, this is God's plan. And he, you know, was meant to be like this" and just trying to make me feel better. And I had to work through that on my own. That was something that I needed to work through and process on my own in my own time. And you can't just pat someone on the back and try and talk them out of feelings and experiences. It's, it's not helpful.

 

Madeline Cheney  9:27 

Yeah. And in fact, I think it's almost, I think it's a little unhelpful, because like, kind of like the beginning episode, also, like with the doctors that didn't really listen to you, or the family members or friends that were, you're trying to give you reassurance. It's like, well, you're like, I want this to be validated. Like, I don't want you to write it off. Like I want you to listen to me because this is a big deal. So I don't know I think, being reassured and it always comes from a good place, right? Like people reassure us because they don't like see us feeling this terrible feeling of guilt. Blake, I don't know, validation is always a good, safe way to go.

 

Wendy Hair  10:06 

I agree. And I don't know what your experience is, and I'm just speaking to my own experience but mothering Ammon, he is the most authentic, honest human being that's ever come into my life, the way he lives is there's no pretense. I mean, he just has a way of all the peripheral fluffies, you know, falling away, because there's no manipulation or agenda. You know, he is just Ammon. And I'm just here and I just, you know, love intensely and love, honestly. And so, you know, experiencing someone like that, and mothering him, in an emotional side of that has helped me to see that it doesn't do any good not to be completely honest with your emotions, and it's okay. And it's good and courageous, to be honest with your feelings, and take the time that you need. And to be okay with saying, I feel this and, and it's gonna take me some time to move through it. And I'm okay with that.

 

Madeline Cheney  11:24 

Yeah. Oh, yeah, I've, I've been trying to learn that recently. It's hard, because like, you know, those, those emotions are like, the worst, you know, like, they just, they're not pleasant, you know, stating the obvious, they are not pleasant, and they're not fun to feel so like, I think it's very natural to try to, like, shy away from it, or to shove it under the rug or to power through but like, that's just not, that's not a healthy way. And it doesn't really work either.

 

Wendy Hair  11:54 

Yeah, and I think about and I don't want to say that I live somebody years with, you know, sadness and grief. But you know, when you, you don't have the option of shoving things under the rug, and pretending they're not there. You need to wake up and face in an honest way, your circumstances and your situation. And, you know, there are elements of we're going to make the best of this. And, and there is joy to be found, and happiness. Acknowledging that this is the honest truth of my circumstance, and what I'm feeling, then there's information in that there's information of how to make shifts and changes and, and there's guidance, and that, I can probably give some examples of that.

 

Madeline Cheney  12:44 

 Yeah, I would love examples of that, that's really profound.

 

Wendy Hair  12:48 

When Ammon was about five years old, and started having seizures, and there was so much going on, you know, you have those, those times in your family where you just feel like can everything just happened at all at the same time. And I had a child who needed extra help at school. And then Ammon was having seizures, and that I had these sweet little one year old twins, who, you know, are very, very busy. And then my oldest daughter was 16, at the time. And she started having just intense mental health issues. And so, I mean, it kind of came to a head and just this big realization, like, things are not working the way they're going right now. And we need to change. And I did have a tremendous amount of guilt of, you know, a lot of my energy was going towards Ammon still and what was going on with him, and just that realization, and the information that was given in the guilt was that we need to make a shift in a change, and that my daughter needed help. So I think that with guilt, those feelings come up. And then there's information given in that, and then we have decisions to make to change and to shift and to create, you know, a circumstances that are more in line with our, our situation that are true to our situation.

 

Madeline Cheney  14:25 

So in that moment, you felt guilt because you weren't able to do it. All right, like, you realized, like, "man, everyone else needs me to and I can't do it all." And so you re evaluated the division of your attention or what you were taking onto yourself, is that right?

 

Wendy Hair  14:43 

Yeah. And just the realization that Ammon was going to progress in his own rate and yes, we were still going to do therapy, but I could do therapy with him during school, I could change times that he was doing therapy, not after school, when I was needed to be with my other children. And I needed to have deeper connections with my other children. And, you know, as hard as that was, I've had to go back and apologize to Natalie, for, you know, not being as present as I needed to be during that time for her. That time helped me as a mother shift to be very present for my other teenagers and for my teenagers, even to this day, that that is a very important thing for me to know that, yes, Ammon needs me, but my children need their mom to be present and emotionally present for them.

 

Madeline Cheney  15:46 

That's really cool. I haven't really thought of the way that this kind of guilt can like, teach you and improve your, your situation, if you choose to, like really inspect it and act on it. I think that's, that's really profound that you're able to do that.

 

Wendy Hair  16:02 

Well, I think that that's the beauty of experience, too, you know, as we learn and grow. And, you know, we are, I think we don't take into account that we're so like, well, I am, I should just speak for me, I became so hyper focused on Ammon's development, and his milestones, and his, you know, triumphs and all these things. And I also need to take into account that I'm developing to, I'm developing skills and these experiences are aiding my own development. And hopefully, I'll take those experiences and the emotions that come up, you know, that are signals of, "hey, you need to course correct."

 

Madeline Cheney  16:48 

Yeah, I think, I don't know, I've had experiences to my life for like, specifically with therapies and Kimball, because that brought that memory up, but like, of being like, I can no longer do what I've been doing, like, Nope, no more can't do it. And I think those feelings are really helpful too, even though they feel a little scary, but just to be like, no, like, no more like something needs to go. And a lot of times, especially with our kids, like where they you know, all the therapies and, you know, everything going on all the appointments are touted as required and non negotiable. But like the required a non negotiable sometimes need to be adapted and negotiated. Like, you just simply cannot do everything that professionals tell you they need. And so I think using that, I don't know, Mama get or parental instinct to make those changes, like switching as therapy to be during school instead of after school, things like that, I think are really, really empowering, and can improve our quality of life. And you know, the rest of the families and the child with a disability, like, you know, everyone can benefit from kind of scaling back and listening to that, to those feelings.

 

Wendy Hair  18:05 

Yes, and I think you made a really good point and just trusting your, you know, speaking for myself, just trusting my internal voice and having the confidence in my decision making skills. That, to me helps with the guilt. Because, you know, when you think about things that you feel really confident about, do you have guilt about that? You know, you're just like, No, I'm we're doing this, and I know, this is the right decision, and it doesn't creep up as much. And so having that confidence in your decision making just has helped me so much. But yeah, I just have one experience with that. To illustrate that a little bit. When Ammon was in kindergarten, his kindergarten teacher said, you know, I really believe that Ammon should be in this autism special class at this school that was a little bit farther away from us. And so I said, okay, and the more I thought about it, after we had had our conversation, the more it just wasn't settling with me. And I just knew it wasn't the right thing. And my children had started a new charter school a few years prior to this. And I just felt like he needed to go to the school with my other children. And so I went to the school and went to the principal and we had a really great conversation. I made a plan and, and as soon as we made a plan for him to go to school there, I knew that that was the right decision. I knew that that was the right place for him. And it was, it was the right decision and he started there in first grade, and he had a full time aide from the time he started till I graduated in sixth grade and It was one of the most amazing experiences having am and at this school, they at the school had created this culture of belonging and inclusion that I still have never seen. I mean, it was the best place for Ammon to thrive and to grow and progress. I mean, by the time he was in fifth grade, as much as he could be in class, they wanted him in class. He needed, you know, a lot of one on one instruction, but the class loved him and he, he would sit there and be a part of things. And sixth grade he had this friend to her name was Bailey, and she just watched out for him and followed him all around, I always told all the girls I'm like Ammon's the best listener, because he won't interrupt you. They would follow him around this little girl Bailey, she just, she told him all about life all the time, and just watched out for him. And this turned out to be one of the best experiences not just for me, but for our whole family to be brought in like that. And so just trusting in our decisions. When we feel something's right, and, you know, guilt can raise its head, and we can say, we've talked about this, I know I'm doing the right thing.

 

Madeline Cheney  21:30 

Yeah. While you were saying that I was thinking about how, like, guilt is such a passive feeling like, at least for me, like, when I feel those, like, "Oh, you're not doing enough", or you know, "you caused this" or you know, whatever. It's usually when I'm like sitting and kind of stewing. But if like, I didn't mean to rhyme, but if I get up and I'm doing, like being proactive, like the way you were able to make that decision of like, no, he needs to go to this charter school and to move forward with your gut instinct, or your inner voice, I'm sure is a good like antidote to tendencies towards guilt, because you're actively, you know, doing what you feel is best for him. And the evidence of that it's best for him, like watching the outcome of that decision you made on his behalf like to be like, wow, like, that was a good call. And I think experiences like that are gonna keep happening. And there may be some mistakes too, in there also, but like to continually be like, Wow, I acted on my gut. And that worked out really well. And, wow, I advocated in this way, and that worked out really well. And like, each time that happens, I just imagine, like, us as parents, like becoming more and more and more empowered in that role, and less and less questioning ourselves with like that guilt or the shame. And I think that's, I don't know, I just think that's really cool.

 

Wendy Hair  22:56 

Yeah, as long as we'll feel emotion, I think guilt will try and get in there. And, you know, it does serve a purpose, it can serve a purpose, it can be productive. You know, I think life experience can get us to a place where we can see it for what it is where, when it bubbles up, and we are feeling guilt we can I think at this point in my life, I think, Why am I feeling guilty about this? You know, what's the truth of that? Is that because I need to course correct? Or is there something I need to change, you know, it can be useful to, you know, move to more productive places, but, you know, the thought of not doing enough and not being enough, you know, I think that just goes hand in hand with being a mom being a mother and, and trying to do to do the best that we can but like summers are really, really tricky, because we don't have respite care and Utah, you have to be on a waiting list for respite care. And those waiting lists can be, you know, eight 910 years to just receive respite care for help that we need so desperately in Ammon is a runner. And so I have to know where he is every moment of the day. Because he doesn't know danger. He doesn't know cars are dangerous as much as we worked on that in AB therapy and he doesn't know he can drown he's not afraid of water and i'm scared he might. He doesn't understand those concepts of danger. And so by the end of the summer, I am I am just completely worn out and running out of steam as every week progresses. And so, you know, and every summer I've just felt so much guilt because I think Man, I just I just am a loser because I just feel by the end of the summer I just like ah i'm just ready for school to start and you know, just needing help and but if I were to take that, why do I feel this way? Why do I feel so guilty about I'm not being enough to do all the things I'm supposed to be doing. And I think the truth of it is that I can't afford a nanny, and I don't have respite care, and I don't have the supports in place. And so, you know, that's kind of the truth of it. And so using that information to then say, well, okay, what can I then put in place for next summer, but when we kind of are able to dissect that a little bit more, which isn't always the reality in a moment, but I think that can be helpful.

 

Madeline Cheney  25:38 

Yeah, yeah. Cuz to me, that sounds like it's transforming. Like guilt and shame and those kind of feelings into self compassion, because then you're like, "yeah, makes sense. I feel this way." Like, I have no help. And I need help. And I think giving yourself that self compassion, even just in and of itself, even if you can't think of solutions or whatever, which is extra awesome. But just being able to validate yourself. Like, "Yeah, makes sense. Like, this is really hard," I think is really helpful.

 

Wendy Hair  26:09 

Yeah, I think the level of grace that we give ourselves should match the difficulty.

 

Madeline Cheney  26:15 

Yeah. So, you know, obviously, at this point, you have a much healthier view of, you know, guilt and shameful emotions and things like that. And you've talked about how, in the beginning, you felt steeped in that burning guilt? Was there like a moment of clarity? Or was that like more of a transition? Like, how did you get from from that point to this?

 

Wendy Hair  26:40 

Yeah, I? That's a really great question, because it is such a process of processing those really heavy, heavy emotions. And I remember this experience that I had, where I was running into Target, and just to grab a few things, just kind of in a hurry, running through Target and I rounded a corner, and there was a mom standing there, and she was standing in front of her cart, and she had a little baby in the friend. And then beside her, was this little girl, and she had one of those little child harnesses on that her mum was holding the end of and, and I looked in that little girl's eyes, and it was like, looking at Ammon, because there was something about her that reminded me so much of Ammon, and she was making noise. And she was probably about four, probably about the same age, he was actually. And then I looked at the mom and I recognized her face, not as then she, I knew her, but I recognized the emotion in her face. Because I, I knew what she was feeling. Just looking at her face, it was like me looking at myself. It was like, I was standing there looking at myself. And here I am watching her trying to, you know, shop and keep the baby happy. And hold on to this sweet little girl. And I I turned to my left and put everything down that was in my arms, that I was, you know, piling up to go check out I just put it on the shelf. And I walked out of the store and I went in my car and I sat and I just start crying. And it was because I had so much compassion for her. I hear I was so enraptured and like, all of the guilt and the grief that I'd never considered giving myself compassion. It wasn't even something that I had felt for myself during that time. You know, seeing her and seeing all that she was doing and the gravity of her, you know, her circumstances and it was like looking at myself and, and that compassion helps replace that guilt and that grief, which seems like such a small thing, but it actually helped me move and be unstuck from the the guilt. Because, you know, I remember thinking, this is big, this is a lot. This is heavy, and I'm doing it and we're doing it and every day we're facing it and every day we're, you know, we're, we show up and do it and so it's interesting how the, you know, we have to process through and then allow that time To process so that we can move to a better place and give that self compassion.

 

Madeline Cheney  30:06 

Yeah, yeah, I love that story so much. I think it is, it's easier to see, you know, from a distance like to see someone else and then to have compassion for them. And to recognize ourselves in them and be like, well, that's, you know, that's really similar to my situation, and really see yourself almost as like, from a distance from that perspective, I think is really, really helpful. And, you know, those feelings of like, wow, this is hard. This is heavy, this is big, and we're doing it, like those kind of feelings. Like, I think a lot of times they're perceived as like complaining, or like whining, like, No, I just need to, like, push through it or whatever. I think like, it's actually really key because we're not complaining. Well, I don't know, maybe it's a form of complaining. But it's, I think it's a healthy one where like, you are validating your struggle, and you're like, "yeah, that's why I'm hurting so much. And that's why it's so hard. Because like, look at that that's really that's really big, and that's heavy. And that's hard." I think that's really, really key in that process. And I think it's counterintuitive, because it's like, oh, I want to get better, and I want to feel better. So I'm going to go feel sad about my life. Like, it doesn't really make sense. But I do think it's key.

 

Wendy Hair  31:23 

Yeah, absolutely. And just honoring that it's, you know, I had a therapist one time teach me that phrase, and it has just stuck with me, because she asked me that she said, Are you honoring your experiences? And I thought, "No, I don't I just am soldiering on, you just kind of you know, I'm giving myself a hard time and why am I beating myself up and feeling like I'm falling short and coming up short." And I'm sitting across from my therapist, and she's saying to me, you need to honor these experiences, the gravity of them and the heaviness of them so that you can experience that self compassion?

 

Madeline Cheney  32:11 

Yeah. Yeah, totally. That really resonates. And like, honestly, like, that's one of the main, like, goals with the podcast itself is like, that, as we listen to each other's stories, we can see ourselves kind of like that moment in target. Like, it's setting up like a target moment, of like, whoa, like, I really resonate what she's talking about, that's been my experience, too. And then, you know, when we're interacting with other people, it's easier and comes more naturally, to be compassionate and to kind of process through things. And so I think, you know, that's definitely something I believe in that power.

 

Wendy Hair  32:49 

You know, and I think, you know, guilt is one thing and shame feels even heavier. Because, you know, shame. From what I've learned it just Rives kind of isolated, in the dark. It's kind of the darker side of the guilt. And so I feel like bringing it to light, like your podcasts where people can talk and share those experiences. I mean, me feeling like my body broke Ammons body. I hadn't told anyone that. And then to hear someone else say that. You know, it kind of washes that shame away. Having those connections and listening to people's stories, and being vulnerable enough to say those things is what helps bring us out of it.

 

Madeline Cheney  33:47 

Yeah, I guess it's not as scary anymore. Yeah. Totally. Well, thank you so much, Wendy. I really, really enjoyed this, this conversation. And I think it's really important and I, I just really appreciate your vulnerability and talking about, you know, these experiences you've had and the evolution that you've experienced.

 

Wendy Hair  34:09 

Thank you, Maddy.

 

Madeline Cheney  34:12 

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