Ep. 22 - When Love Isn’t Enough: Parenting Through Chronic Illness

How do you keep going when, despite your best efforts, your child’s health isn’t improving? In this deeply personal episode of webe Pärents, Dr. Alona Pulde and Dr. Matthew Lederman open up about the emotional and mental toll of parenting a child with chronic illness.

They share their own journey with their daughter’s Crohn’s disease, the challenges of balancing medical decisions with emotional connection, and the guilt, frustration, and helplessness that come with it. More importantly, they offer a roadmap to navigating these moments with resilience, presence, and compassion—both for your child and yourself.

Tune in to hear how embracing uncertainty, regulating emotions, and shifting from “fixer” to “connector” can transform your parenting experience. Plus, learn the powerful RAIN tool to help you manage the stress, anxiety, and overwhelm that come with the unknown.

💙 Whether you’re facing a similar journey or supporting a loved one, this episode is a must-listen.

To learn more about what Alona & Matt are up to check us out at webeparents.com, or follow us on our socials at Instagram, Facebook, TikTok, or YouTube. Be sure to subscribe to webe Pärents wherever you listen to your favorite podcasts.

Transcript

Chronic Illness Topic Tools-esv2-62p-bg-10p
===

[00:00:00] 

[00:00:00] Alona Pulde: Hello and welcome to We the Parents, the podcast where we explore the joys and challenges of parenting and help families grow closer together. Hi, I'm Dr. Ilona Polday. 

[00:00:17] Matthew Lederman: And hi, I'm Dr. Matthew Letterman. 

[00:00:18] Alona Pulde: And before we dive in today to our topic, we just want to remind you to please, please, please help us by subscribing, um, and staying a part of our communities, helping us spread the word to other parents.

Um, And we would really appreciate that, so thank you. So, today, we're addressing something that has, has, uh, hit home for us, uh, very recently. And I imagine for so many other parents who are caring for children with chronic health issues. And the question is, how do you keep going when despite your best efforts, your child's health isn't improving or isn't improving fast enough.

[00:01:05] Matthew Lederman: Yeah, that's a tough one. That's, that, this has tested me more than a lot of things. Seeing one of our children suffer and struggle despite her best effort working so hard. And still struggling and notice that that's this, this one, you know, it's, it's hard to talk about. 

[00:01:27] Alona Pulde: Yeah, it's been, uh, just to share with our audience.

So we have a daughter who has Crohn's disease and has managed it pretty well. Um, with medical guidance and on a, uh, pretty restricted medical diet. But over the last Month and a half or so, she has just been flaring and [00:02:00] we're. really trying to uncover what is going on. And it has been, to say the least, a very frustrating, um, and worrisome couple of months.

[00:02:19] Matthew Lederman: If, it's, it's tough because there's a lot of, there's this lack of clarity around exactly what to do. If someone gives me a, hey hit this target or achieve this goal, I'll go after it, I'll attack it. But I really want to move and take action and I'm not always sure what action to take. And then there's times where I'm just feeling a little beat up and you gotta wait it out.

Things don't change as quickly as I'd like. And that impatience that I have makes me want to do something when sometimes doing something is actually not what I need or what my body even needs. But it's hard to not do something. And I notice that then I'll, I can easily shut down, go quiet, try and get lost in mindless work.

And I have all of these coping strategies that really don't serve me in the long run. 

[00:03:17] Alona Pulde: Yeah, and I might not share those strategies, but I definitely Have my own. And ultimately what I find is that it is so draining. It drains your heart. It drains your soul. Um, when you are so invested. And we are, we're naturally invested in our children's well being.

And you're seeing either slow or no progress. You're seeing their frustration and their fear, and you're feeling helpless. Um. And it's an emotional rollercoaster. It's an emotional rollercoaster of [00:04:00] hope and fear and frustration and worry. Um, and that's kind of what we're going to continue to explore today.

[00:04:10] Matthew Lederman: And how do we, how do we process what's going on, support our daughter, support each other, own our own coping strategies? Like, I know that you might go more to fear and sadness. And I might go to frustration, irritability, anger, and numbness. And knowing that is half the battle, and then the other half is when we go there.

You know, and, you know, even when you came and checked in with me at times, and I'll be in my sort of shut down, intense, like I'll go to an intense, place where I'm just focused on work or researching the problem or researching the solution and then You might want to connect and it's like, well, how do we stay connected despite our different ways of navigating these situations?

[00:05:05] Alona Pulde: yes, and how do we connect to our daughter and there's an additional layer for me that Played a role and I didn't even realize the intense burden of it Until, until, you know, in talking to trusted providers who are actually managing her health, I noticed the sense of relief because I was playing both doctor and mother and fixer and caretaker and, you know, all these different roles and expectations that I put on myself and where I landed at the end, what felt.

Best was not to be naive about it. I mean, obviously we're doing our own research and our own [00:06:00] investigation so that we're informed, but to be her mother above all else and connect to her in that dynamic. Um, and 

[00:06:16] Matthew Lederman: yeah, I dropped, I dropped the ball there. I specifically remember one night. When there was a sort of a turn in the opposite direction that we wanted to go as far as how she was doing.

And I was on my computer and she was at my, in my bed. And she was like, Hey dad, you know, do you want to cuddle before bed? And she wanted to cuddle. I said, yeah, I'll be there in a second. Meanwhile, I'm working, I'm research, I'm reading, I'm typing some emails to some experts. And I look up and she fell asleep and it was like an hour later.

So I got completely lost in my work and she just wanted somebody to cuddle with and hug her. And I was, because I couldn't go to that, I think it was partially at least, because I couldn't even go to that vulnerable place. But I was in an effort to try and help her. I actually didn't provide the help that she needed in that moment.

[00:07:20] Alona Pulde: Yeah, that was interesting. You know, as you were speaking of that, I had the vision that I think connected me to wanting, first and foremost, to be her mom, which was Uh, about a week ago, you actually weren't here and I was, um, helping the girls get ready for bed and, and, uh, our little one fell asleep pretty quickly and our older one was up for a while and, um, and we cuddled and I was singing to her and rubbing her head and I noticed just how [00:08:00] great that felt to connect to her on, in such a heart space, you know?

And how much I just, I needed that as much as maybe she needs that too. Um, so that was a real eye opener for me as far as where do I want to be in all of this right now? Um, but it is, it's so hard, it's so hard because We love our children so much and we would do anything for them and leaving things unknown, settling into the uncertainty is absolutely, it's, it's not even uncomfortable, it's unacceptable on some level.

You know, your body just can't accept leaning into that and, and being in acceptance in that. 

[00:09:00] Matthew Lederman: Yeah. And on top of that, I have a loud inner critic that's going all the time saying, you know, you missed this, you should have done this. If you had done this differently, this wouldn't have happened. So I have this monster inner critic that's attacking me and trying to do Well, and prevent me from making, you know, misses in the future that could be helpful.

So good intention, but quite painful strategy. You know, it's, uh, it's tough to hold all that. 

[00:09:29] Alona Pulde: And I think ultimately it's harmful. Not a criticism of you because I do it as well. But when we get so immersed in Our head space, there's tension and that tension is felt throughout the family and that's something that she feels to, you know, I remember.

Telling her a couple of days ago, Hey, honey, you know, because she [00:10:00] would come like two or three days after symptoms started getting worse to let us know that, oh, now they're quite bad. And I was sharing with her, you know, it would be really helpful if every time you feel uncomfortable, you come let us know.

And her response was, yeah, but I don't want to. I don't want to be a burden. I thought to myself, Oh, goodness, you know, that, what other message would she be getting from that level of tension and impact? You know, the story that she's telling herself is she's the reason for all of this. Um, and that was another.

Uh, very humbling eye opener for me as far as I think I'm doing good with all this research and all this time that I'm spending in my headspace, but really not only is it not neutral, but it could be harmful.

[00:11:03] Matthew Lederman: And that's the balance is how do you, how do you figure all that out? There's a time where research is helpful. There's a time where it's not. There's also this idea that it's almost like this idea of retirement. And if you get to retirement, then all of a sudden, you'll be happy. It's similar here, where if I just figure out the problem and fix it, then everything will be fine.

And it's really a bit of a facade because even if she gets better, she's still, you know, it's a roller coaster. This is a lifelong thing. She'll be balancing. So, excuse me, show she. It's like when we have a plan and we feel optimistic and hopeful, even if nothing has changed in her, our energy changes. So there's this, if we have trust that things are going to work out and that we'll have our ups and downs in the moment, but long term, everything's going to be okay.

If we can get to that [00:12:00] faith, even, you know, even if in the end, God forbid, things aren't okay. What's best for her right now is the belief that everything's going to be okay, and that we'll handle whatever comes in the future. Because that's when our energy is most supportive. And caring and nurturing. 

[00:12:16] Alona Pulde: I think that second piece that you've said is something that really resonates with me.

You know, I used to believe when I was, probably until like last year, but I used to believe that what I really wanted to hear from somebody was, I promise you everything is going to be okay. You know, I remember actually you and I looking at movies and you would get annoyed because how can they promise that?

They can't prom that's not. of a viable promise and I would say, what are you talking about? That's exactly what people need to hear. That's what I need to hear as I, as I think about it more, what resonates best is, Hey, I, my plan is to work as hard as I can to make everything okay. And we're going to work together to do everything that we can to make this.

Okay, and I'm going to be with you every step of the way. And I think, you know, in that acknowledgment of, I don't know that everything is going to be okay, but I'm not going to stop putting in the effort as we're working together to take care of you in the best way that we can. Does that make sense? 

[00:13:38] Matthew Lederman: Yeah, it makes sense.

And I, and it depends on what people mean by everything is going to be okay, too. I guess it depends how you define okay, but the energy of, I got to. Fix it now and I'll relax later right versus I'm gonna relax now Even in the unknown is That's gonna be healing. 

[00:13:59] Alona Pulde: Yes, [00:14:00] 

[00:14:00] Matthew Lederman: and the trust that Whatever happens, we're going to handle it the best we can.

[00:14:04] Alona Pulde: Yes. 

[00:14:05] Matthew Lederman: That, that trust, that creates a sense of inner peace that is healing and connecting. 

[00:14:12] Alona Pulde: And I think that inner peace is such an important component. You know, I heard a quote the other day, and it's so simple that it almost sounds silly, but at the same time, I thought it was pretty profound, and it was, um, If things are not balanced, they fall down.

And it's so true, and at the surface it's just like, duh. But when you really think about it, without that balance, foundations crumble. Connections crumble. Family dynamics crumble. And so I think here is another example of an opportunity to, we want so much to do something. It's inherent in our being. Do something, do something.

Forward progress, right? Forward movement. And you mistake that for progress. Um, but sometimes what's needed most is a step back, is a pause, is a sitting with your feelings, is a reflection, is a connection internally. 

[00:15:14] Matthew Lederman: And that, this is, gets us towards our tool for today, but it's very hard for me. This idea that sitting with your feelings is what's serving you best versus doing something, researching something.

We have, it's been rewarded all my life to do something, to think about something. It hasn't, it hasn't been rewarded as far, well, feel something. So it hasn't been modeled, it hasn't been rewarded, it hasn't been encouraged. So this idea that feeling something is what's going to serve you and your family best in that moment.

It is really hard to swallow sometimes, and it's taken a lot of work to start to not only believe it, but really feel it and trust it. 

[00:15:59] Alona Pulde: Yeah. [00:16:00] You know, the image that I get is Because the feeling into is the pause. It's that emotional, it's the moment of emotional regulation that really allows for expansion and clarity.

I think of, you know, the, the airplane, um, analogy where, um, put your oxygen mask on first, right? And, but our instinct, if the oxygen masks come down, save our children, save our children, but if we take that minute for clarity, of course, it makes sense. I put mine on. First so that I don't pass out doing the first child and the second child doesn't get one, you know, so So I think it is a really important thing to remember how this Moment in time to connect and reflect to your own feelings actually really serves a positive purpose.

[00:16:59] Matthew Lederman: Yes, this idea of pausing and sitting with your feelings is putting on your own oxygen mask. And it's not about wallowing or avoiding taking action, but to understand and connect with yourself. more fully. It's, it creates like this foundation, clarity and resilience and thoughtful action. And with that, then all of a sudden you can navigate challenges without being overwhelmed or reactive.

And when we make decisions in reactivity, we often make decisions that don't serve us as well. 

[00:17:35] Alona Pulde: This is actually not foo foo. This is based on evidence from emotional neuroscience and trauma informed care. And it really shows that our going to that numb place where we have all these repressed, suppressed, unprocessed emotions, they can truly block effective problem solving.

They [00:18:00] can even worsen, and often worsen, physical symptoms, and they lead to impulsive decisions that are not always helpful.

[00:18:09] Matthew Lederman: What I've Try doing was cultivating that skill set of just sitting with feelings. And there's a time and a place for everything. There's times, uh, someone once shared with me when I asked, is it the mind or the, is it the heart or is the mind or the phelps, which is better? And it's not that one is better than the other.

And depending on what you're doing, you might lead with one over the other, but you sort of want to run by both of them. So if you have something in the thought brain, you bring it down and check out how that feels. You have something, you're feeling something you might want to check about. You know, what, what do you think about that, acting on that?

So I think it's the ability to do both. And depending on where you're at, you might start with, if you're trying to program a wireless router, you might not need to get in the heart space. You can start, you know, in the head space. But there's a lot of times in these situations, dealing with a sick child, that starting in the feeling space serves you more.

And doesn't mean, like I said, I want to really emphasize, doesn't mean you don't go into the headspace or sometimes start with the headspace. But what I think is lacking from a lot of people's Uh, toolbox is this, is going to this felt space and what to do when you're there. Because once I agreed to go into the felt space, I was like, Oh yeah, what do I do?

What does it mean to feel your feelings? What does it mean to go? So there's this, there's a practical way to walk through that, that I find very helpful. 

[00:19:38] Alona Pulde: Yeah. And I think again, basked in, in scientific evidence, which shows that that ability to process and regulate your emotions can really enhance.

physical well being and help you with decision making. 

[00:19:57] Matthew Lederman: And maybe that's, that's the [00:20:00] point to hit home is that sitting with feelings doesn't replace action. It just makes the actions you take more effective by reducing, you know, emotional reactivity. And allowing for these thoughtful responses that otherwise couldn't happen very effectively.


[00:20:19] Commercial Break
---

[00:20:19] Matthew Lederman: So you have the, the skeptics, I myself was one, and sometimes still am one. Depending on if, if that, if that reactive part of my brain is online, and I'm in my old coping mechanisms. And someone says, Hey Matt, why don't you feel your feelings? I might. You know, tell them to go take a hike or use even more colorful language.

But I might, you know, I might be like, I'm in it. And I think that that's nice, too. Sometimes, hey, I'm just in my intense sort of shut down space. And we've created a good shorthand to say, hey, if you need to connect, I need to physically pick myself up. And instead of having the thinking chair, we have the feeling couch.

And I'll say, I need to go to the, I need to go to the feeling couch. I'm going to unplug from my intensity from doing and trying to fix. Sit down, we'll connect, we'll feel, and then I can get back up and go back into my intensity if I want. And that's been really helpful, but there's this physical separation as well as sort of a mental emotional one.

Is there anything else you'd want to tell the skeptics or myself when I'm feeling skeptical? 

[00:21:36] Alona Pulde: I think I want to make clear that feelings are data, you know, they're, they're. Um, important signaling messages to kind of help guide and direct us to help us avoid repeating mistakes and help us again mistake, uh, forward motion for progress.

[00:22:00] Um,

and it can prevent things like over testing or rushing into treatments when you don't even know the underlying root cause, but you're treating because knowing that you're treating something has that, that sense of, well, I'm doing something, 

[00:22:18] Matthew Lederman: but 

[00:22:19] Alona Pulde: you may not be doing anything. Um, and also the important piece that emotional regulation really boosts problem solving, but it also physically helps us heal.

And I think those are really important and that avoiding emotional processing has real costs. 

[00:22:41] Matthew Lederman: Yeah, you know, the neuroscience shows that high stress shuts down the prefrontal cortex, which is the part of the brain responsible for rational thinking. And by sitting with feelings and processing them, you activate your parasympathetic nervous system, sort of that rest and digest part of the autonomic nervous system.

And that allows your brain to function more optimally. So there's the benefit of being able to be more effective. There's also suppressing your emotion can start to manifest physically so that you don't even feel good. You can get headaches, digestive issues, fatigue. And I definitely, when I'm worked up, I can definitely feel it in my stomach.

I don't sleep as well. I actually almost never get headaches and I was, I told you, I think a couple of weeks ago, I was getting headaches once in a while. So, and, and, you know, you can get angry outbursts. And then there's the op, you know, decision fatigue or decision paralysis where that's showed up for me where you would ask me, what do I want to watch?

And I'm like, I can't even make a decision about what I want to watch as far as a movie, just pick something. So I get all these signals that, and as I'm talking, I'm starting to feel embarrassed almost, you know, like, Oh, you know, I get all these signals. And I should know better, like, hey, I, you know, you're, you need to tend to yourself a little bit.

And the worst thing that you could do [00:24:00] is to tell me to tend to myself. I get even more defensive, like, what do you mean, don't tell you? So it's like, how do we figure all this out? It's a challenge. Because I want, if I'm thinking that being intense and working like that and running, you know, my engine on empty is what I need.

The last thing I want is someone telling me to stop doing that too. What's your reaction to that? 

[00:24:25] Alona Pulde: I agree. I do not tell you that. Now, yeah, I, I get it. But I think it's also important what you notice that your body is telling you, hey, this is, this course is not working. This direction is not working, you know, crash course, crash course.

And sometimes we just, we head right for that crash. Yeah, we talked about it being a metaphor to your car, for example, the warning lights on a car dashboard, and you can ignore them for a while, but Eventually, the car breaks down and you don't just disable the lights and pretend they're not there in the same way that we can't just pretend those feelings aren't there.

The way to fix that car is to take a minute to pause to investigate why is this light blinking for me here to figure out the root cause and then to fix that. And sometimes connecting with your feelings is just that it's taking that pause to take a deeper to be able to take a deeper look into what are you actually dealing with?

[00:25:37] Matthew Lederman: So it's, it's trying to figure out ways to work that in and still not pull away these old familiar coping strategies. But maybe it's to say, would it be worth, is it, am I willing to try and do it a little differently? Or am I willing to add this in a little bit later? So even if I want to work real hard, shut down, be intense, maybe I can take a couple of minutes and then go back to my [00:26:00] intensity.

I find that when I tell myself, I don't have to stop being intense. I can just come back to it a little bit. It seems like a little bit of an easier pill to swallow. But if I can remember that sitting with feelings isn't a luxury or a nice to do, but it's actually a way to build internal stability, that makes thing, you know, action more effective and sustainable.

That to me, if I can really start to believe that, and, and my body trusts that. You know, it's helping to manage stress and connect with deeper values and avoid emotional burnout. Those are all really important. And I know that. So it's like, in the heat of the moment, can I reconnect to that awareness? And I think by practicing the tools, like the one we're going to talk about in a little bit here, You ultimately become more resilient and capable in life's most challenging moment.

[00:26:57] Alona Pulde: And just to name again, the, the challenges that come up for parents, we recognize them, we felt them, we experienced them, and, you know, we talked about them. Um, Throughout this podcast, but it's falling into that trap where you think you're you're responsible for finding answers and for fixing it But over time that just leads to emotional burnout feeling drained and disconnected There's sometimes there's either hypervigilance or, or decision paralysis with do I do too much?

Do I do too little? How do I intervene? What do I do? Um, there's the guilt, the grief, the fear, frustration, they, the worry, it all coexists. And it's really hard to stay hopeful when things aren't moving in the right direction, despite efforts. Um,[00:28:00] 

That whole mishmash is a personal debt, a personal cost that's happening for you. Your mental health, your physical health is also at risk and at cost. There, there, there's a cost to that and neglecting your own needs in the process. makes you less available for your Children, not to mention that it really strains any adult relationships in in the household and those strained adult relationships.

Also have impact on the children. So it's really, I think you nailed it. It's essential to recognize that part of the healing process is not just all of the fixing, but that emotional state, you know, balancing and regulating that emotional state so you're available for all of the other things. I think I'm going 

[00:28:58] Matthew Lederman: to have to listen to this podcast again, myself.

[00:29:01] Alona Pulde: Yes, yes. So what is our tool today, Matt? 

[00:29:05] Matthew Lederman: So our tool is RAIN, R A I N, Recognize, Allow, Investigate, and Nurture. It's a mindfulness based tool that helps parents process the overwhelming, overwhelming emotions come with sort of slow or uncertain progress in children's challenging health journeys. So when you're not sure what's going on, when there's ups, when there's downs, this has been helpful when I can access.

the bandwidth, the wherewithal to engage. So, step one would be recognize, and that's about identifying what you're feeling in the moment. Are you feeling anxious? Are you feeling frustrated? Are you feeling exhausted? Angry? And just name that. Well, you could, and you can write this down. You [00:30:00] can name it in your head.

You can do it with your partner and talk about it. But it's simple. Hey, I'm feeling helpless because I can't seem to control this situation. I'm really wanting to control. And that gets you the feeling and the need, and you can then go into, I'm needing a little more predictability, I'm really needing this sense of security that everything is going to be okay.

And I'm feeling helpless and scared. So it's recognizing what's going on, and this is some of the work that we do when I have to sit on the feeling couch. And we have to go through this. And then step two would be allow. So allow yourself to feel those emotions without judgment. It's normal to feel overwhelmed.

But feel it, and you'll help me feel it when we're sitting. Where do you feel that in your body? Where does it show up? What does it feel like? So I'm feeling helpless, I'm feeling hopeless, and it's just this heavy weight on my shoulders and it's just pulling my shoulders down, I can barely lift them up.

And there's also like this sadness and I feel it in my eyes, there's this almost like some water behind the eyes. So I'm really connecting to how it's showing up in my body. And, and then name, you know, it's okay to feel this way. Allow it. It doesn't mean that I'm failing. It doesn't mean there's a problem.

It doesn't mean I have to fix anything. Allow those feelings. Step three is investigate. So generally ask yourself, where are these feelings are coming from? What story or fear is driving the feeling? For example, anxiety or guilt or fear. I am afraid, here's an example, I'm afraid that if I can't find a solution, my child will keep suffering.

And I'll be looked to blame. And that one I definitely get, where if I don't fix this or figure out what's going on, it's my fault. I should know better as a doctor, as a healer, with all of my training. Why am I not getting this right? Why is it not happening easier? So just connecting to that [00:32:00] story and giving space for that story, not to make it go away.

Just think about a little space around the edges so it has a little room to hang out. And then nurture is the fourth step, the end. Offer yourself compassion. And you're very good at helping me with this. You'll give me compassion. Again, the feeling couch. Remind yourself that you're doing the best you can and that you deserve care too.

And sometimes that's hard to acknowledge that. As parents, it's very easy to put your own needs or neglect your own needs. Your child needs care. Your family needs care, but you know, I'll care for myself later. It's almost like when I get to retirement, I'll care for myself. So offer yourself compassion and then consent could sound like I'm doing everything I can and I need to take care of myself so I can stay present for my child.

And it's helpful if caring for yourself isn't valuable enough to you care for yourself so that you can show up for your children and family and by. Framing the reason to care for yourself as a way to show up with more, uh, robustness or with resilience and higher quality for your family. That's sort of a way around if you can't connect to the care for yourself and the value intrinsic in that.

[00:33:24] Alona Pulde: Yeah, I like that reminder and I think it's really important, um, that, that there is value beyond for yourself, but for your family and your children as well when you can nurture and take care of yourself to be present, available, and expansive to those that you love. I like that a lot. 


[00:33:51] No Skills to Pro Skills
---

[00:33:51] Matthew Lederman: So you want to give an example of the going from no skills to pro skills?

[00:33:55] Alona Pulde: I think there's so many ways that. We do no skills, you know, and, [00:34:00] and we're so good at the no skills. We're so good at the no skills and you do it differently. So you can share your perspective. I know for me, my no skills look like I become so hyper vigilant, not only in what I could do differently, but in what.

She can do differently. So I'm hawking her, watching, thinking, Oh, you know, don't sit like that. It might hurt and, and don't eat that or eat a little faster, eat a little slower, or, you know, all of that stuff that just drives her nuts. At the end. Don't use this product. Use this product. Wait, don't use that product.

Now use this product. I mean at some point I am I can see her face and I think to myself just Stop, but I'm so in it. It's like inertia has taken over, you know, and I I am so locked in the headspace, so disconnected from that heart space. And, um, it's only when she mirrors. When I get from her, the impact that I'm having, that's the, the stop gap, you know, like, wait a minute, what am I actually doing here?

And it's not what I think. 

[00:35:19] Matthew Lederman: It's not as helpful as you think. No. And sometimes she'll speak up and see it's not about getting it right. It's about recovering and reconnecting. So, I remember you telling me a story that she basically looked at you and said enough. Yes. And rather than take it personally or double down and get defensive or criticize, well, what she was doing or not doing, you were able to hear the heart message behind that, the feelings and needs that she was saying.

[00:35:48] Alona Pulde: Oh my gosh, that was such a beautiful moment because I was, she, take, she, if left up to her own decision making, would probably be sitting by the [00:36:00] table eating. A meal for three or four hours and it just doesn't work because in order to she's on such a restricted diet in order to get her everything she needs in the course of the day, she can't finish a meal and then have space for her next meal.

She's full, so then she misses meals and then that's not a good thing. So I was hawking her to finish her food and at one point she looked and she's like, Enough! And I did pause and I did connect her and what was beautiful about that was in that connection, she later sent me a text and it said, uh, something to the effect of, you know, mom, even though I'm still mad at you, I know that what you're doing is out of care for me, but this is the way that it makes me feel.

And I thought it was just such a beautiful opportunity for her to share with me what that impact was and for me to receive that. And it, it's humbling, right? Because we so want to help, but our help can actually be really harmful. And so that was me with absolutely no skills. 

[00:37:18] Matthew Lederman: And if you could do it with pro skills, what would that look like?

[00:37:21] Alona Pulde: Yeah. So that, that rain tool comes. Um, really handy then, you know, where I recognize when I noticed that anxiety or frustration, I check in with myself and it's exactly that I'm feeling helpless. Because I want so badly to control the situation and I cannot control it without causing harm and to allow myself to feel that it's okay, I, you know, to, to, to really step into those feelings.

It's okay to feel this way. It doesn't mean that I'm failing [00:38:00] and it doesn't mean that I have to take action in this moment. And. Really understanding where the feelings are coming from. Um, you know, a lot of times it's this intense anxiety around, I'm afraid that she'll keep suffering if we don't do it this way.

Um, and then really nurturing myself, offering myself compassion. I think also reminding myself of, you know, taking that gap, not just for me, but for her too. Um, but I think when I am able to emotionally regulate and really nurture myself and that anxiety is tempered, then that expansiveness of, OK, I can give her a little bit more time, I can work with her to try and get the meal plans successful, versus working against her, thinking that I'm working for her.


[00:38:59] Bringing it Home
---

[00:38:59] Matthew Lederman: I like that. I like that. So, for people that want to try and bring this home with the skills. It's about the same, the same things, explaining it, inviting it, modeling it, and practicing it. So explain it around sharing emotions like fear and sadness are natural, especially when someone's struggling with health issues.

So just share with the family, this is, this is something that can happen when there's health challenges, and it affects not only the kid with the challenges, it affects the other children, it affects mom and dad. How do mom and dad show up? I found it very helpful when I'm getting super intense to have the kids check in.

So they notice the tension and they'll say, Hey dad, do you want to check in? They'll ask if we want a heart hug. And then I, you know, ask them to help me in just doing the RAIN [00:40:00] tool. So explaining it and then inviting them to come and support you. And then you can support them. And say, hey, when you have tough times, how do you navigate?

How do you feel? And we go through the rain steps with them as well. 

[00:40:15] Alona Pulde: And I think that's really important because that invitation is, um, you know, unpleasant feelings are welcome. They're not something that we have to shy away from or fear or repress. And the more that we can invite those and process through them, the less scary and big they are.

[00:40:35] Matthew Lederman: Exactly. And that's the more you can model it. When you model it, that's how kids learn it's okay. You can tell them it's okay until you're blue in the face. Right. But until you show them, hey, I'm feeling anxiety, I'm feeling stressed. Let's do the RAIN tool together. I'm feeling overwhelmed. Anybody else feeling overwhelmed?

Would anybody else want to go through the RAIN tool together? And then practicing it. Family routine where you check in with each other, it can be over dinner time or bedtime. I noticed with Kylie at bedtime, we do these brain dumps where, Hey, just tell me what's going on. I'm not going to ask any questions.

Just tell me what you're feeling, thinking, whatever, just a place for someone else to hold it. And then you can also get specific. What's one thing that felt really hard today and how'd you handle it? So there's different ways, but it's all about bringing in space and time to connect around how you're feeling either in your, in yourself or sharing it with other people.

[00:41:34] Alona Pulde: I love that. And we often end, we always end our podcast with one last thing. Today's one last thing I think is it's really important to remember that parenting in general, but especially through a child's illness, is a marathon. It's not a [00:42:00] sprint. And so sometimes the greatest strength is in learning to rest and care for yourself along the way.

And that's, I think, what I want to leave myself with, and our audience with today. I 

[00:42:16] Matthew Lederman: need to remember that. I'm running sprints for weeks and months. You can't do it. Well, great. Well, we'd love to hear from our listeners. Please rate and review and subscribe. Share your story with us. You can email us at parents at webetogether.

com. Your experience might help another family feel less alone. So, we'd love to hear from you with any questions, thoughts, or comments. Any, uh, experience that you just feel moved to share. Thank you for listening. 

[00:42:48] Alona Pulde: Thank you.