The Special Needs Mom Podcast

Grief that Overwhelms Compassion with Kristin Herzberg Purdy

• Kara Ryska • Episode 251

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This week, I sat down with Kristin Herzberg Purdy—psychologist, rare disease advocate, and mom of two children with disabilities. KristIn shares her deeply personal story of parenting through autism, epilepsy, and a rare neurodegenerative condition. We talked about the emotional toll of constant caregiving, the push to find answers when the medical system leaves you hanging, and how self-compassion gets complicated when you're stuck in survival mode.

Kristin was so open about what it means to love fiercely while grieving at the same time. We touched on everything from her professional lens as a trauma psychologist to the messy feelings of comparison and guilt that creep in, especially when you’re watching other families do “typical” things.

She's also raising funds for a gene therapy treatment for her son, Paxton, and currently in the quarterfinals of a Supermom contest that could bring in $20,000 toward that effort. She's a powerhouse, and I know you'll be as moved by her.


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Website: https://www.kararyska.com/

Kara:

Hi, I am Kara, life coach, wife and mom to four incredible and unique children. It wasn't all that long ago that my son received a diagnosis that had my world come crashing down. I lacked the ability to see past the circumstances, which felt impossible and the dreams I once had for my life and family felt destroyed. Fast forward, past many years of surviving and not at all thriving, and you'll see a mom who trusts that she can handle anything that comes her way and has access to the power and confidence that once felt so lacking. I created the Special Needs Mom podcast to create connection and community with moms who find themselves feeling trapped and with no one who really understands. My intention is to spark the flare of possibility in your own life and rekindle your ability to dream. This isn't a podcast about your special needs child. This is a podcast about you. If you are a mom who feels anxious, alone or stuck, then you are in the right place. Welcome. Hello and welcome to the Special Needs Mom podcast. Hopefully my voice is still holding strong. For those of you following along the podcast in real time, last weekend we had the trip to Indian Wells, which is in the deserts of California for Levi, my son's 16th birthday. The trip was amazing, and I'll tell you more about it in a future episode, but the reason I'm bringing it up is I got home. Then I promptly got sick. It was such a bummer. But don't you worry. I rallied and we have an interview style episode ready for you today. I'm excited for you to meet our guest, Kristen Herzberg Purdy. Now in the episode, I think what I particularly admire about Kristen is that she allows herself to just kind of be real. She. Is transparent about the experience she's actually having. And I think it's just really refreshing. I mean, actually, I think most of the guests that come on the show do that. But today just the impact of being with her for me was, I think just, uh, recognizing the beauty and being with people exactly where they are and how they are. She shared with us about her experience with grief and how it's often. Overwhelming to her ability to have compassion in those moments. And it, I think that's the part where just this is the, the real day in the life of a special needs mom. Lemme tell you a little bit more about her before we get into the conversation. She's a proud mother of two special needs children, a five-year-old daughter and an 8-year-old son. She was born in Southern California and moved to New York in 2006 for graduate school. Where she met her loving and supportive husband. She now lives back in Murrieta, California, where she's a psychologist in private practice specializing in trauma and anxiety. Her husband and her recently started a 5 0 1 C3 nonprofit organization called Cure, CLCN six, and this focuses on raising awareness about the mutations on this particular gene of which her son was diagnosed. Their focus is fundraising and developing a first in the world gene therapy for this particular mutation. Now we'll leave it there. We'll let you get to know her on the episode. Kristen, welcome to the Special Needs Mom podcast.

Kristen:

Thank you. I'm so honored to be here today.

Kara:

Yeah, it's fun that we've actually met in person. Yeah, that was really fun. you're my favorite type of guest, the one that's like. I wanna be on it, but also I don't wanna be on it. Yeah. On the podcast. And so that's, my sweet spot. so in terms of, yes, you know, there's a lot of people that have pr people that reach out to me and their stories are extraordinary and little bit jaw dropping and. I think the stories that we really deeply connect with are the everyday stories. The moms that like haven't written 3000 books and are kind of just, in the day to day, the thick of it like most of us are. Yeah. So let's give our listeners a snapshot, a little of your becoming story. So tell us a little bit about you and your life as it is right now.

Kristen:

Okay. Yeah. Thank you. yeah, so I actually have two stories because I have two, special needs kids. I have a eight-year-old son, Paxton, and a five-year-old daughter Aria. And, I'm mostly gonna be focusing on Paxton though because, we've been going through so much with him in particular. so in terms of Paxton and my becoming story with him, we were so excited, when we found out that, we were gonna have him, you know, in terms of my pregnancy and his birth, they were both fine. it was so interesting'cause he seemed like a, a healthy baby. but when we reached his first year autism screening, he failed. So, between the ages of one and two. was diagnosed with autism. he was also diagnosed with, some global developmental delays. so he had some, challenges with feeding, walking, running, although, he could walk and run on his own at that time. So when he was younger, he was able to walk and run on his own. he's always had speech difficulties. so he was eventually given a diagnosis of apraxia of speech. No matter what we tried, we, we put him in all kinds of therapies. he seemed to. kind of, progressed pretty slowly, especially with speech. So, and he still doesn't really speak much. so at five years old, he started having seizures. at first they were subtle, but they eventually progressed to, the tonic-clonic seizures, so the really bad ones. and, it was really scary because all of a sudden, you know, our, our sweet little boy was having, these seizures, and at one point he was having them. Multiple times an hour, had to be hospitalized. So it was, a crazy time. We, we didn't know what to do and all just kind of came on suddenly. We never expected it. I mean, no parent does, right? Mm-hmm. No,

Kara:

especially, but, you know, you've been going along five years kind of thought, oh, we got this handled. You got the autism. No big deal. I mean, big deal. But like, okay, we know what this is, and then a whole nother, wave. Can you short?

Kristen:

Exactly, exactly. Yeah. it was so scary, especially because some of the first, anti-seizure medications we gave him had really negative side effects. he was on, some like Onfi, which like, he couldn't even like set up. He was, he couldn't

Kara:

Oh, wow.

Kristen:

He couldn't swallow. Yeah. It was so scary. We were like, well, if these medications aren't gonna work, what are we gonna do? so, so eventually, because we had tried a lot of meds and, his seizures were, still not adequately controlled. He was referred to an epileptologist, by his neurologist. and the epileptologist had ordered a whole exome sequencing. We had no idea what that was. We had never heard of it before. even though, Paxton had, previously, undergone a lot of. Different kinds of genetic testing before. So even when I was pregnant, after I was pregnant, you know, he had done genetic testing multiple times in the past. Hmm. so, you know, of course we didn't think anything of it, right. Because, we had, you're like, oh, we already did this, like Yeah, exactly. We're in the clear, right? Yeah. Right. so when Paul told me, my husband told me, you know, we had received this email, from his genetic counselor, that said he had a rare. Genetic mutation. and so rare, I mean, it's only been found in a few children, and that it was neurodegenerative, so it's progressive. and in these other children it was pretty severe. there's no treatment available and basically his genetics team told us, you know, there's nothing we can do. We'll see, we'll, talk about it in a. Few years, so, so, oh

Kara:

yeah, I see. A couple years. Right. That's one way of handling it.

Kristen:

Right. Right. So, so yeah, so we are like, what do we do? Right? Yeah. I mean, we had never been in this position before. You're, you know, you trust your medical team, right. and that, you know, the. So far, you know, they had been with us. They were helping us, right? I mean, epileptologist, we even did a vagal nerve, surgery for Paxton. So he has the, vagal nerve too, along with the medications, because the medications, you know, weren't adequately controlling the seizures on their own. so we were just in shock. I mean, we were devastated. our whole world was kind of turned upside down in that moment because what do you do? Right? You just feel so stuck, like, and, and just, it, it feels so surreal. You know, you, I mean, you never think that this is gonna happen to your child. So,

Kara:

Give us, let's go back a little bit and to kind of get a snapshot. So your son is eight Paxton's. Eight. Your daughter's five Uhhuh. And your daughter's diagnosed with autism as well? Yes, she is. Uhhuh. Where? Did that fit in in terms of, receiving that diagnosis?

Kristen:

Yeah, so, I'm trying to think of how old she was when she was diagnosed. Maybe around like the age of two or three, or between the age of two or three. and, yeah, we started to notice some things, that were. Kind of similar to what we knew with Paxton, and we, we just, you know, figured maybe we would have to get her tested for that as well. Since, Paxton, also had that diagnosis. and then, she was doing things like, lining up objects. people would say that she was in her own little world, you know? Mm-hmm. she had a hard time, especially and emotionally, she, would have a hard time like with boundaries with other kids, like, or even with adults. Like she would, force, she like aggressively forces people to take things from her, like she likes to share, but in like, almost like an aggressive way. Like if you don't take, she's an aggressive chair like that Yeah. Could be

Kara:

worse. Right? But I mean, not to minimize it at all. I can understand how gets. To be very, challenging out there in the world. Like, so I, I definitely don't mean to minimize it.

Kristen:

Yeah.

Kara:

But it's just kind of a funny, funny thing when a good thing goes too far.

Kristen:

Exactly right. Right. Yeah. So, we had, some idea that, she also had a diagnosis. She also had some global, developmental delays like, speech difficulties at first. And, she has got her speech, really improved recently. Mm-hmm. She, she is very verbal. She loves to talk. Yeah. But, when we, when she first got the diagnosis, she wasn't speaking as much, so that was also hard. Yeah. Yeah. So, yeah. So

Kara:

if you can take us back to like, what was it like to then get your second, so at that time you had Paxton who was diagnosed autistic.

Kristen:

Mm-hmm.

Kara:

not yet displaying the seizures. And you now have a daughter who is receiving the same diagnosis, at least you know that's where you're headed. What was that like for you to kind of be facing a second diagnosis at that time?

Kristen:

Yeah, I mean, again, it's, it's so hard, you know, because, you love your kids so much and, you almost feel guilty, right? Like saying, you know, I. I don't want another diagnosis for another child, but at the same time, you know, it is really hard. Yeah. Yeah. This is not what you picture, you know, when you become a parent that you're gonna have two special needs children. That there are so many unknowns. You don't know what kinds of struggles they're gonna have or what their life is gonna be like, you know? Yeah. Even though we love their personalities and they're both beautiful in their own way, it's hard not knowing, you know, how this is gonna impact them for the rest of their lives.

Kara:

Yeah. Yeah. And impact you and your husband.

Kristen:

Yeah. Right.

Kara:

Yeah. So. We've heard about your kids, which is lovely. I'd love to hear a little bit more about you. What do you do with your time and your energy and kind of, tell us a little bit more about you.

Kristen:

Well, it's hard right now. Yeah. So, for, my job, I, I am a psychologist, so I really enjoy it. It's hard sometimes it can be stressful at times, especially'cause I work with, mostly trauma and anxiety. but I do really enjoy it. in some ways, you know, I feel guilty that I can't be home more, but in other ways, it's kind of like, it kind of helps, you know? You know, it's hard to say, but like I sometimes it's like a break, you know, doing my work. So, yeah,

Kara:

yeah, yeah. I identify with that, like when I'm, completely focused on, on somebody else and the work that I do, it's a nice reprieve from being in the life that, that I live, so I can relate to that. Okay, so, and you live in Murrieta, California?

Kristen:

Uhhuh? Yeah, I live in Murrieta. Yeah. yeah, so to to better answer your question. Yeah. I mean, it's hard right now. I, you know, it's either working, you know, I work a lot of hours, especially because, we are, developing a treatment right now for Paxton, with U Mass Chan Medical School, and, So we've been spending a lot of time, fundraising for that. We have to raise all the money ourselves. so I feel like right now, most of my time is spent either, working or fundraising or, spending, a precious time. I, I can with my family, so, yeah. Yeah, understandably so. By yourself. Yeah. I mean, at night I like to, I like to read. I reading is a big for me and I like to walk, so I do find some time, but it can be hard. Yeah.

Kara:

Yes. yeah, I don't ask that question to insinuate that you should be like, having 25 hobbies and like, you know, riding show horses on the weekend. But I ask that question because for so many of us, part of this process. Strips us of the life experience that we knew. And a lot of times our identities follow. And so then we find ourselves kind of collapsing, inside of our, our children's identities, experiences, diagnoses. And it leads to part of the devastation and the grief. we've not only lost the life we had, we've also lost ourself. Before we started recording, you had shared with me a little bit like, yeah, I think I'm still in survival.'cause you had listened to a previous episode where I've talked about the evolution of a special news mom where. After talking to mom, after mom, and of course my own experience, I recognized that there's kind of this pattern or, or stages that we find ourselves in, and I'll briefly go over them to kind of give the listener context. First one is that stunts Revival, it's that first diagnosis or the, I should say, the, newness of a diagnosis. In terms of the impact and you know, a lot of times in the stage you're quite literally fighting for their life and keeping them alive. So it really truly is a survival state. You're learning the language, it, it's all new. And it's interesting'cause you have kind of a you, it's very clear, right? You have a different phases, I should say. Different chapters of a stunned survival, right? You had the initial autism and then you had another autism, and now you have a whole new level of that stunned survival with the onset of the seizures. So, you know, we stay here in this stage as long as we need to, as long as we we're in that survival state. But eventually, we'll normal, like kind of get our new normal and move on to what I call stable, yet self-sacrificing. This is where I notice moms particularly, not always moms, just moms I should say, but most of the time it's the mother that is that like mama bear protector and will do anything for her child. Which includes most of the time sacrificing herself. And I'm not saying this to say this is good or this is bad. This is just an observation of what I notice in, how we're operating. So this is part of the process and a lot of times there's a desperation or a fixation and finding that fix or cure, for our children, and understandably so, right? Especially when you know your child's life is on the line. We eventually, move from that self-sacrificing usually out of desperation, usually out of exasperation, as in like, I can't continue going on like this. It's actually not sustainable. Two, a phase that I have two different names for one, I call it alone and afraid because we find ourselves alone and afraid. But I also call it the rebellion. Because it's the phase in which we essentially have to reinvent how we're operating because we wanna hold onto that, which we're fighting for. We wanna keep fighting, but we recognize how we got here won't get us there, as in if we keep fighting in this way, like we will burn out and then not be able to help our child at all. And also, we have to find other avenues. For ourselves in terms of experiencing joy, kind of balancing out some of the aspects of our life. The next two phases are kind of, eh, kind of collapsed together. I, I've been thinking about like, how do I change these to, to. More summarized, but essentially from the rebellion we move into calm the chaos where we learn and manage. We learn how to kind of be in both spaces of both. fighting for a child, advocating for a child, loving our child, and doing all the same for ourself. Mm-hmm. And kind of learn to navigate this uncertainty and learn how to live in this unpredictable, uncertain. Then we move into what I call power, peace, and possibility, which sounds so lofty. I know it does. But don't let that lose us. But it's where we, have developed a way to land to find peace. We connect to the part of us that is kind of our purpose. That's a power and the possibility piece. it doesn't mean that our stories are wrapped up in a bow. It doesn't mean that my son gets healed. You know, it doesn't necessarily mean that your son gets healed, but it is part of the process and evolution that I see. So when we were chatting casually before we started recording, you had said, I think I'm in the stunned survival. And with your permission, I. kind of counter proposed that I think you're actually in the stable yet self-sacrificing. And the reason that I shared that is because, part of, you know, getting ready to come on the podcast, I asked people to fill out a couple forms. So I have an opportunity to get to know you a little bit before we talk. And I could tell that you're running a million miles an hour. To do all the things that you can to help your son.

Kristen:

Yeah.

Kara:

and sounded like you, you know, confirm that. Yeah, that's probably true. So I'd love to hear a little bit more about your experience in this stage, or your stable yet self-sacrificing.

Kristen:

Yeah, that's, yeah. No, that, that resonates with me and, yeah, I mean. it makes sense and it's, it's hard to hear, but also it resonates with me at the same time. Yeah. I definitely feel like we're running a million miles a minute. I definitely feel like, I am sacrificing my time right now that my husband and I sacrifice our time together. Yeah. Mm-hmm. I mean, most of our weekends are spent, you know, fundraising. and if not, I'm trying to, you know, work all that I can to try to make enough money so that we can, be able to develop this treatment for Paxton.'cause the only thing that's on our mind right now, or the, the main thing that's on our mind is, saving him. So, and

Kara:

yeah.

Kristen:

So it's really hard. It feels sometimes like I'm in panic mode. Right. Like, it's hard to, really focus on anything else right now. Yeah. I mean, yeah.

Kara:

And I just, yeah. Well, what I'd like to do is just acknowledge that's so understandable. Mm-hmm. And. The thing that's coming to my mind, it's been on my mind and my own personal journey, is meeting ourselves exactly where we're at with compassion. Mm-hmm. So when I say that. Are you able to, to meet yourself with compassion right where you're at, given that you're in this? This particular stage?

Kristen:

Yeah. it depends on the day. Some days are easier than others. You know, it's really interesting because, and I mentioned this earlier too, I am a psychologist and, so that is often what I'm telling my clients to do. self-compassion is, a really important part of my practice. In fact, in my, grad school training, I, My dissertation, my research was about acceptance commitment therapy, which talks a lot about acceptance, uhhuh and mindfulness and self-compassion. but, yeah, it's hard to stop and do that to yourself sometimes or give that to yourself sometimes. Yeah. So, it's, I think we can be the worst offenders.

Kara:

I say this to my clients all the time too. Yeah. And it doesn't mean if e even just because we know it in our heads, right? Yeah. It doesn't mean that we're then practicing it out in real life every day, all the time. And that's why we're talking about it.'cause I think it's important to, one, first, bring ourselves compassion for not using some of the tools that we are telling other people.

Kristen:

Yeah.

Kara:

but to normalize the experience of the struggle of like, yeah, we can know that we are supposed to. Bring ourselves compassion, but sometimes we don't. Yeah, and that's okay.

Kristen:

Right?

Kara:

So.

Kristen:

I feel like sometimes, the grief overwhelms the compassion. Like, you know, I feel sometimes like, I'm just trying to get through and I'm just trying to make things work so it can be hard to even go there with myself, you know? And there are days when I do feel better and I do feel like. I am gonna get through this and I'm feeling more hopeful. And I know that's different than compassion because compassion is kind of meeting yourself where you're at and understanding yourself. but sometimes that's hard when it's overshadowed by everything else that you're going through.

Kara:

Yeah. Well, thank you for sharing that. I would love to hear a little bit more about what you're experiencing when you say that the grief is sometimes overshadowing the compassion.

Kristen:

Yeah. You know, sometimes, there are times, for instance, when, I mean even just with the autism, I mean, but with both kids, you know, there are times when you see stories of other, parents and, on social media especially, right? And they're taking their kids to sports games or doing other things with their kids, and. You know, I ask myself is Paxton ever gonna be able to do anything like that? I mean, probably not. And I have to just kind of accept that. But at the same time, it's really hard. It's, it's hard to. As much as I love him and as much as I, you know, he's the happiest and sweetest boy, you know, it's hard to, know that there are certain things that he's probably not gonna be able to do. You know, he may never have a relationship. He may never, I, I don't even know if he, he's able to walk again, you know, because he has been losing his ability, even just to walk. So, you know, it's, it's hard. it's, sometimes, you know, you feel. That grief or that jealousy, you know, that all these other kids can do these things and, and, my kids can't at least, you know, particularly with Paxton. So

Kara:

thank you again for sharing that, that actually makes so much sense, especially when you kind of dive in deeper to, to acknowledge that the stings of grief. Mm-hmm. that are. Your experience when you're seeing the comparison of the experience you're having with other children. Even other children with diagnosis. Right. I think those are the ones that really get us, right? Mm-hmm. Where it's like, yes, they have autism, but it looks like they have the happy kind, right? Where,

Kristen:

right.

Kara:

I mean, in my experience where it's like, you know. Or I'll say cancer, right? It looks like they have the happy kind of cancer where they're not still living the travesty every day. They're not having water bottles thrown at their head. you know, in terms of like the impacts of, of what the disability experiences in some of our homes. Yeah. So. It sounds like those moments where it's reflected back to you on those screens of what you don't have mm-hmm. That, that's probably where you. shift into, to a judgment or assessment or a jealousy. Yeah. Rather than that lean of compassion.

Kristen:

Right. Exactly. Yeah. That's a good way to put it. Yeah. Yeah.

Kara:

And that's so understandable. I think that's actually what all of us are experiencing, so thank you for putting. Words to it. because again, I think when we talk about it, then each of us can notice that when we're having the same experience, we can recognize, oh, I'm doing the same thing where I'm not just maybe having a feeling about like, I feel jealous of that person or a family or child or whoever. But I'm actually now judging myself because of how I feel. I'm saying, how dare I feel that way? Mm-hmm. Or whatever that might be. So that's judgment and the opportunity we have is to, to shift toward compassion. Mm-hmm. And meeting ourselves there with kindness and warmth and, whatever we need at that time. Right.

Kristen:

Yeah. Yeah. Sometimes we find ourselves bargaining, you know, it's like when he was diagnosed with autism, that was a shock and we were grieving that. But then he was diagnosed with epilepsy and he started having seizures and we're like, why can't it just be the autism? Right? And then, yeah. Then you're like, oh, I didn't know how good I had it. Genetic disorder. And then we're like, or the genetic mutation we're like, we just don't want him to die. Right. It's interesting how also that grief changes over time too, because. you know, you, you have one diagnosis, but then you get this much worse diagnosis and then it's like, you know, you wish you could go back right. To what you had. Yeah.

Kara:

Yeah. Yeah. No, that's, definitely true. How has your training as a psychologist who specializes in trauma and anxiety, how has that helped you personally or maybe even hindered you as you are navigating all of this?

Kristen:

Yeah, that's a good question. You're asking really good questions and again, because we're so busy, these are good reflections. So, yeah, I mean, I think, you know, I know about self-compassion, so I do try to practice that. When I do think of it, I, do think about my thoughts and try to reflect on things that, you know, I, I do think that I often have this thought that being a psychologist does help me, think about things in different ways and do things in different ways. Now, again, because we're kind of in that, Stage where we're going a hundred miles a minute, it's hard. Yeah. Mm-hmm. So there are times when I also can maybe beat up on myself for not doing more of that work. Yeah. So in some ways, I guess that's hindering because, I feel like I know all this. Yeah. I'm not doing it. You know, Uhhuh.

Kara:

huh. Yeah, it's like you're using the knowledge against yourself rather than using it for yourself.

Kristen:

Right?

Kara:

Yeah. I could see that with even myself, with like working out and being like, I know exactly how I, I know what to do, right? Like, there's no question. Yeah. and I'm not doing it. And so it's easy to kind of go down that lane. so I think, what I would put in is just to notice that, notice that, and notice anytime we notice something, that's when we have a choice or an opportunity that we can continue doing going down that road. Or we can simply just. Stop and literally do anything different. Mm-hmm. We can stop and do 10 jumping jacks and be like, look, I interrupted that pattern of going to that kind of judgment or the self-critique or, or guilt.

Kristen:

Yeah. I mean, I have learned over time, I, I've gotten a lot better at, doing self-care. I mean, like I said, I, I do, try to get my mind off of things by when the kids go to bed. I, I'll read at night or, I love walking. I, have to get at least my 10,000 steps a day. So I do that. but, you know, it's, it, it's hard because it's. It's hard to get your mind off the situation and not be consumed by it. Yeah. And always be kind of one step ahead of yourself thinking, you know, what is my next step? What am I gonna do next? How are we gonna approach this? What do we need to do? So, so I could hear, I could like literally hear my mind and feel myself doing that, you know, constantly. Mm-hmm. Mm-hmm. And so it's, it's this, it feels like this constant battle with yourself, you know? Mm-hmm. Where you're trying to ground and trying to slow down, but you're. Anxiety tells you that's not okay because you have to keep going. You have to do whatever you can to make sure that everything's gonna be okay. So,

Kara:

yeah. Yeah. I was curious. So your training or your specialty is in trauma and anxiety. I was curious if you personally had dealt with anxiety before or, or currently would say that you have anxiety. Absolutely. Yeah.

Kristen:

Yeah. Yeah. I do. I, I've always had anxiety. Yeah. I, I, I am a catastrophizer. I, yeah, I, I worry a lot. I ruminate. Yes. It's hard to turn my mind off. So that combined with what we're going through is a lot. Yeah. Yeah.

Kara:

for, it's a recipe for solid anxiety. Yes. So I'm curious if you walked into your office mm-hmm. And you told yourself your story, the snapshot, you said, if you shared your story Yeah. Where would you start with yourself in terms of supporting yourself with the anxiety specifically?

Kristen:

Yeah. I mean, I think at first I would just be there for myself, right? I mean, I would just, I think I would just wanna be heard, you know, Uhhuh, I would just want someone to, show me empathy and just be there for me. Yeah, I think that's where it would start. I don't know that. there's anything that I could do for myself that would make me feel better if I was trying to fix it. Right. Or solve it. Mm,

Kara:

good one. Yeah. I

Kristen:

think I would

Kara:

just be, that I think is the worst feeling ever. Right. When, when somebody, particularly somebody that's in a helping role such as you tries to fix Yeah. it feels particularly bad. So that's a great point. Mm-hmm. So you would bring yourself compassionate listening ears.

Kristen:

Yes. Yeah, exactly. Yeah.

Kara:

Nice, nice. Anything else come to your mind

Kristen:

in terms of what I would do? Uhhuh, I mean, yeah. I, I think, you know, just the, the noticing, the being with the grounding. Yeah. being patient with yourself, you know, anything that helps to kind of, I, you know, I think about what you said about going the 50 miles a minute, right? And, and I think that helps to kind of slow things down,

Kara:

I gave Kristen an analogy before we got on the call where it's like, when we were talking about kind of being in that stable, yet self-sacrificing stage where it's like she's. Running a marathon, but through her desperation has started by sprinting. Mm-hmm. And I think that this is the dance that you're in is like, okay, how can I still run the marathon? That matters more than anything, but also not. Burnout. You know, not like check myself out of the race because I've pulled a muscle or run outta steam or whatever that might be.

Kristen:

Yeah, it's, important to step back and reflect on that. Yeah. I find myself getting, you know, more irritable at times. Right. I find you know that you have all these little signs that, you know, this the way that I'm doing it. Isn't maybe the best way or it's not working, or I'm still trying to figure all that out, you know? Mm-hmm. And so it's getting to that place where, how do I do what I need to do for my kids? Right? And especially for, making sure paxton's okay, and still, like you said, take care of myself and

Kara:

yeah, that's the essential question. How do I do everything I need to do for my son and my children, and. For myself.

Kristen:

Yeah.

Kara:

And I think a lot of us would stop right there and be like, well, it's impossible, so I'm just gonna take care of Paxton. Mm-hmm. And I will suffer through as long as I need to.

Kristen:

Mm-hmm.

Kara:

And this is the part where I think I would say, okay, that is an option. You can do that. No one's gonna stop you. No one can stop you.'cause you're a force to be reckoned with. But consider. Struggling with the question and actually recognize the fraction of a splinter of possibility that exists. And then that's the game actually is to like stay in the possibility of the both of, yes, I can both run this marathon on, but do it in a way that I actually can get to the finish line, not just for Paxton, but for myself.

Kristen:

Mm-hmm. Mm-hmm. Yeah.

Kara:

Yeah. Right. So that's your homework. Okay. What other things have helped you along the way? So, and at any point, right, or even this could be back to the initial diagnosis of autism for either of your children. What have been the things that have been glimmers of hope or giving you peace along the way?

Kristen:

Yeah. You know, I think, doing everything we're doing is a double-edged sword because, you know, like you said, sometimes it can be a lot and it feels like we're just going, going, going, but at the same time. focusing on what we can control and being productive in this process, can also help us through it. You know, when we feel like there are things that can be done, you know, especially when you're told by your medical team that, we'll get back to you in two years, right? You, you just bring into action, right? You're not gonna take no for an answer, right? You wanna figure out what you can do. So I think, you know, in some ways, doing what we're doing is also helping in the sense that it, it makes us feel like we're, doing something, that there is an option, there's something that can be done. So,

Kara:

yeah. Especially since it sounds like you. when you raise enough money, have treatment options Yeah. Or treatment, hopes, I guess maybe that would be a better way of saying it, which is pretty incredible. A lot of people don't have that right.

Kristen:

Yeah. Yeah. I mean, the hard part is raising the money, but yeah. Uhhuh know that there are options and we are, going to stop at nothing to do it. I mean, yeah, we've already started this process and we're gonna make sure that it happens. So, and it feels pretty cool actually to be part of this. we've talked to a lot of other special needs families, a lot of rare disease families, and, you know, it makes you feel like you're, you're part of a community, you know, and, and yeah, we're all kind of contributing to the world in some way. So Uhhuh, even though you don't wanna be doing it for your own child, you still feel like you're making some kind of contribution.

Kara:

So, yeah, wouldn't it be great to be a scientist, that's unrelated to any of it, that's just doing all the great work, but you're not, you're a mom coming alongside and, and kind of becoming, I don't know if a scientist, but like becoming a. An advocate.

Kristen:

Right.

Kara:

along the way.

Kristen:

Yeah. Yeah. Now it's all happening really fast, which, you know, is the hard part. But, but yeah, it helps you feel more in control knowing that there is something that can be done. So, yeah. And then other than that, I mean, I, you know, just my family's really important. You know, having those supports is important. it can be hard sometimes because not everybody, you know, can understand what you're going through. And, I have found, some other special needs moms, for instance, in my community, that they're amazing. I mean, they barely know you and they're there for you.

Kara:

Mm-hmm.

Kristen:

Yes, but you know, people, especially my family, I mean, they're there for us and, you know, they, they help as much as they can. I mean, it's hard sometimes, you know, you don't wanna feel like a burden. Paxton has to have his medications in the morning and at night, and, you know, and he has seizures at night, so it's hard for Paul and I to leave, right? Because it's like, you don't wanna like burden anybody else, With, his care, you know, with taking care of the kids. My, my daughter's a ball of energy. She just runs around the house and so mm-hmm. and she, you know, has, she's at risk of eloping. We actually have like a, a lock on the top of our door so she doesn't run out of the house. So, so, you know, that's part of it too. It's, it's hard because, you know, as much as we appreciate our supports, it's still hard. Hard because, It's harder to watch special needs kids.

Kara:

Yeah. Yeah. Yeah. Definitely. very understandable.

Kristen:

Yeah.

Kara:

Well, I'm glad that you have a supportive family That's incredible. And other aspects that are offering you hope and, and kind of, those glimmers for yourself. Is there anything else that is on your heart or mind to share as we start to wrap up?

Kristen:

I saw something the other day where it's like, Love and grief, like, you know, sit side by side. And I think that's so true. I mean, it's just, I was telling my friend the other day, like, it's such a weird feeling because it's like I. You just love your children so much, you know, and you like everything they do is so cute. especially like, they both have their own unique qualities, right? you know, Arian makes us laugh all the time'cause she just does the, the funniest things that Paxton, everyone loves Paxton'cause he just loves everybody. mm-hmm. He loves grandparents and every time they come over he's so happy and. How can you feel so much love for your kids, but also, you know, be so scared and have so much grief at the same time. It's just such an interesting, Duality, I guess. So

Kara:

it really is an interesting, I think duality is a great word to put in there because that's where we're talking about this duality of like, everything you do for your son and everything you do for yourself and the love and the grief, and that is a lot to hold. Mm-hmm. So, thank you for sharing your story, your life with us in the Special Needs Mom community and I. I look forward to hearing how things go and wish you all the success in the world as you go. Raise that money.

Kristen:

Thank you. We really appreciate that.

Kara:

If people wanna reach out to you and connect with you, what's the best way for them to get ahold of you?

Kristen:

you can, get ahold of us at, contact us at Cure CLC on six.org. I think I gave that to you. That's our email, so,

Kara:

yeah. Okay, good.

Kristen:

okay. Okay. so this is a, a silly thing, but I am running for, a contest called Supermom, and you can do one. free vote every day for this. and it should be going until like middle of June. I'm actually in the quarterfinals right now. so I'm hoping Then I'll go to the semifinals and then the finals. okay, what is super

Kara:

Mom? You gotta tell, tell us more about that. And please, ladies help, help a mama out and go give her at least a vote. Okay.

Kristen:

Okay. So yeah, I think it's being, this run is this, I, it's being run through a certain magazine. I think it's being run through like Women's World or something. Uhhuh and it's all these thousands of moms competing, for, the top spot, a supermom in the country. So, so yeah, so you can, go on and vote and, what do you

Kara:

get if you win?

Kristen:

Oh. so, you get$20,000, which is

Kara:

okay,

Kristen:

a big reason why I wanted to do this. plus you get a trip to Napa and you get, I think, a story in, the magazine. So,

Kara:

okay. I think this is great. And I can't think of a more super mom than you, so that's an easy boat. Oh,

Kristen:

thank you. Thank you. Yeah.

Kara:

Okay, well the link for that will be on the show notes. So ladies, I know you're busy, you're doing your dishes, you're like pushing meds, you're doing all the things, but. It'll take, it's called a minute and a half. Yeah. To go push couple buttons and go vote for Supermom. So thank you so much for being on the Special Needs Mom podcast.

Kristen:

Thank you so much. That was wonderful. Thank you. Yeah, you're welcome. All right. We'll see

Kara:

you all in the next episode.